So I talked to a lady in Aizona that was so sick she could not leave her house for 5 years. At a point of no hope she tried a mild hyperbaric chamber for 1 hour per day. She felt no difference first 60 days and was ready to quit but persisted. 8 months later she was back to the health before lyme. Anybody try this with this level of committment. I wonder if you could combine this with photon therapy?
Posted by birdie67 (Member # 35994) on :
The newest success story here is from this. He did it 1 hour a day and bought his own chamber. Very interesting.
Not sure about combining it with photon's. I just started photon treatment.
Posted by Phoiph (Member # 41238) on :
Hello, all...
I was just about to start a new thread on mild hyperbaric, then found this one...
I believe you both are referring to my story:
I had severe neurological Lyme w/Babesia & Bartonella for 8 years...considered an antibiotic failure, and so ill I was homebound for 5 years straight.
My symptoms were extreme and relentless; too many to list here. I was told, even by LLMD's, that I needed a miracle, and there was nothing more they could do for me (I tried many, many protocols with never any improvement, just a continual spiral downward).
I eventually became so toxic and environmentally sensitive that I could do no formal treatments (except homeopathy) for 5 years before starting MILD hyperbaric treatment w/supplemental oxygen (I bought my own chamber and self-treated 1 hour daily).
I now have my life back...working again, running (I had been a runner for 17 years, pre-Lyme), traveling, etc. It has been a miraculous recovery, and it is 100% due to mHBOT (along with meticulous diet, and gradual exercise).
I believe success depends on the frequency and consistency of use...many people say they "tried hyperbaric, but it didn't work"...but if you query them, inevitably they didn't do it consistently or frequently enough...or for a long enough duration. You must be committed to this treatment to have success.
I almost made the fatal mistake of returning my chamber after 40 consecutive "dives", not feeling any improvement at that point. Fortunately, I was talked into continuing treatment, and felt the first "change" (not necessarily "improvement") after about 2 months.
It was a rocky, 2-step-forward, 1-step back road, but after several months, although I was not completely well, I was functional again, and after 1-1/2 years, I was "back"...
Now, 2 years from the beginning of treatment, I am still noticing benefits from the chamber...and truly have my life back...very active again...no medications...no restrictions...
Low (pressure) and slow WORKS...I'm living proof...
P.S...Birdie...I am a "she"
[ 10-05-2015, 04:53 PM: Message edited by: Phoiph ]
Posted by nitsuj1225 (Member # 39866) on :
May I ask what chamber you purchased? There are so many out there, what are the "best" ones?
Posted by Catgirl (Member # 31149) on :
Phoiph, awesome!
Do you or did you have babs too? I vaguely remember reading that oxygen was bad for babs (not really sure about this)?
Posted by Pam08 (Member # 19203) on :
For those of us that don't know much about HBOT can someone please elaborate on what mild hyperbaric treatments would be as opposed to regular HBOT?
Thanks! Pam :-)
Posted by JCarlhelp (Member # 15957) on :
Mild hyperbaric chambers are soft shelled like a big bag to climb into. They have lower effective dives called ATA of 1.3 versus hard chambers going much higher. People who use oxygen uses through an oxygen concentrator with a 92% purity versus hard that can be pure chamber oxygen or mask breathing pure oxygen. Big difference is ATA which can be thought of how deep under water. Mild as I understand can be used daily while chambers usually are 30 days on 30 day break. Oxyhealth is probably the largest distributor of mild hyperbaric chambers. Try searching You Tube for Mild Hyperbaric Treatment.
Posted by Pam08 (Member # 19203) on :
So mild hyperbaric uses less pressure and less than 100% oxygen? Is that correct?
Posted by oxygenbabe (Member # 5831) on :
I use it.
Posted by Phoiph (Member # 41238) on :
Mild hyperbaric technically refers to the use of pressures at or under 1.5 ATA.
FDA approved "mild" or "soft" chambers reach 1.3 ATA (4.2PSI). The chambers can be equipped with an oxygen concentrator, which, although not sold together with a new chamber, can be purchased separately with a MD's prescription (as an off-label use). The chamber also requires a prescription.
The oxygen concentrator must be of a specific power to be used effectively with a hyperbaric chamber, but has the advantage of not needing refills of oxygen cylinders, etc.
Unlike some commercial chambers, these "mild" chambers have a continual circulation of room air going through them (via compressor), and oxygen (approximately 90%, depending on the concentrator) is fed through a tube via a port on the chamber, and is breathed through a mask. This has the advantage of keeping the internal percentage of circulating oxygen lower, which is much safer (less fire hazard) than the units which are flooded and pressurized with pure oxygen.
Studies are showing that the lower pressures are more beneficial for neurological and other conditions...which is explained in this article by Dr. Harch, who has been researching HBOT for 20+ years, and written a book called "The Oxygen Revolution":
Commerical chambers can reach higher pressures, which is necessary for other applications, (e.g., wound healing, etc.).
Posted by poppy (Member # 5355) on :
Does this cause a herxheimer reaction?
Posted by Phoiph (Member # 41238) on :
Yes, it can...I experienced flares and changes before improvements...2 steps forward, 1 step back, as I mentioned in my first post...but it is easier on the body than higher pressures for this application.
Hyperbaric raises the level of oxygen not just in your bloodstream (which can only carry so much oxygen), but throughout your tissues, lymph, plasma, etc., and is forced into places where your circulation can't reach.
Many non-beneficial organisms cannot thrive in an oxygen rich environment, and are killed off by the oxidative process. The body then has to not only clean up the resulting debris/toxins (which is helped by hyperbaric, as it supports the organs of detoxification), but it also has to ramp up its production of natural anti-oxidants as a protective measure from the oxidative process (which studies show it does).
This process is crucial and might feel like ups and downs, but the general trajectory is upward.
I also didn't (and don't) do other therapies that might interfere with this process...just consistent, ongoing, daily treatments, with scrupulous, gut and nerve healing diet, and mild, increasing exercise to move lymph and energy...
Posted by Pam08 (Member # 19203) on :
Thank you for the explanations. This sounds a bit complex...is it really safe for people to do this on their own?
Phoiph...if you don't mind me asking what chamber did you purchase?
Thanks! Pam
Posted by Phoiph (Member # 41238) on :
I have 2 chambers; one purchased new, one used (for my cabin). They are both "Rispiros" manufactured by Oxyhealth ...you can view them at Oxyhealth.com.
The chambers are very easy to use. I have done over 750 dives without assistance.
Oxyhealth claims a perfect safety record. Oxygen concentrators (purchases separately) are designed for home use. You will need a prescription written by an MD to purchase both.
Like anything else, there are a few things to know if you're thinking about purchasing/using one...which I'll be happy to share if you are seriously looking into it...
Posted by JCarlhelp (Member # 15957) on :
Well no pun intented, I took the dive today and got a used one. I think it was a great price as I got the Oxyhealth Vitaris 320 with an oxygen concentrator and cooler for $7K, not cheap but either is the 17 years our family of 5 has been fighting this disease. Also getting a PEA1 next week. These are my research $ for everybody. It will take several months to know how things go.
Posted by Pam08 (Member # 19203) on :
Phoiph...Thank you so much for the information. It is good to know that you have used it for so long without any problems.
It looks like purchasing a hyperbaric chamber is pretty expensive. Unfortunately I can't afford to do it but I will keep the info for future reference.
It looks like OxyHealth has a rental program where they allow people to rent them for a monthly fee and if you decide to purchase it they will put all of your rental payments towards the purchase price which is awesome. That could be a great option for those that can afford the monthly rental fee.
Posted by Pam08 (Member # 19203) on :
Wow that is great JCarlhelp! Definitely keep us posted on how your family does with both of those purchases.
Posted by Stubman1 (Member # 41135) on :
I wonder how much the monthly rental program is..Anybody looked into that and would care to share?
Also can you do the hyperbaric chamber and still be on meds? I just started Mepron etc for Babesia..
Posted by Phoiph (Member # 41238) on :
It has been helpful for some people who can't afford their own chamber to team up with another person or two in their area and share costs...
I have also discovered a company that specializes in loans for medical equipment...
Using both options together can bring the cost down to about $5.00/day for people
(No, I'm not a sales-rep for any company :)
Posted by Phoiph (Member # 41238) on :
Hyperbaric treatment increases the metabolic rate, and so can "potentiate" the effects of some medications, so this has to be taken into consideration.
Posted by Pam08 (Member # 19203) on :
Stubman1...I am not sure what the monthly rental cost is but I did just e-mail them and asked for that information. I will pass the info along if they reply back to me.
Hopefully it will be a good price for those that might be able to afford a monthly payment.
Posted by Phoiph (Member # 41238) on :
Last time I checked, the Rent-to-Own option for a new chamber offered by Oxyhealth consists of a down payment (can be put on a credit card), then interest-free rental payments are divided by 10 months, charged to your card monthly, and go toward the purchase of the chamber if you decide to buy. This can make the monthly payments pretty steep for many people, however, since the charges are being put on a credit card, they could technically be paid off over time.
The other option, as I mentioned, is to buy a used chamber and/or team up with someone in your area for cooperative use and shared expenses...may be less convenient, but more economical...
Posted by oxygenbabe (Member # 5831) on :
$7k for a vitaeris is great. Can add sauna if you like.
Posted by WPinVA (Member # 33581) on :
Phoiph - You mentioned you have/had babesia as well. Do you mind if I ask if you had babesia duncani and if you're "cured" of that now as well as the Lyme?
When I looked into HBOT, I read that it is not recommended for people with babesia, as the babesia is supposed to thrive in an oxygen-rich environment. Not sure if that is true, and would love to hear your take. thank you!
Posted by cottonbrain (Member # 13769) on :
phoiph, are you affiliated in any way with the company whose name you provided?
Posted by JCarlhelp (Member # 15957) on :
There is one like I bought with an oxygen concentrator on Ebay right now with a starting bid of $6.500. I think that phoiph has said a number of times she is not affiliated in any way with Oxyhealth but I guess she should answer that.
Posted by oxygenbabe (Member # 5831) on :
Only get oxyhealth. It is FDA approved. There have been accidents with others.
I had babesia and no problem with deep dive and mhbot. I am not sure if that is urban legend or valid.
Posted by JCarlhelp (Member # 15957) on :
The one on Ebay is an Oxyhealth
Posted by Haley (Member # 22008) on :
WPinVA. I have a friend that did Oxygen and her Babs came back like crazy!!!
Posted by JCarlhelp (Member # 15957) on :
Hsley, was it mild or deep dive
Posted by Phoiph (Member # 41238) on :
As I mentioned, I am not a salesperson, nor do I represent any company.
I am simply trying to inform people of how I got well, and assist them in obtaining affordable and accessible mHBOT. In my opinion, this is a very powerful treatment that is totally misused, misunderstood, and underutilized.
Helping other people discover hyperbaric makes me feel like my 8 years in hell had some purpose...
In answer to the question about babesia, I have yet to find research that supports that mHBOT is contraindicated if you have babesia. I had a full blown case (as well as bartonella), and it was the ONLY thing that worked. I have no babesia symptoms, and I am on no medications.
Even if babesia were to "like" oxygen in vitro (which I have yet to find research on this), consider that things are very different within the body. Hyperbaric is unprecedented in helping the immune system to recover and function properly...which allows it to fight other infections effectively.
It is more than just chasing "bugs"...it is about putting the body/immune system back in charge...
By the way, please be careful when buying a used chamber online. There are ways to protect yourself...as in using an escrow company to hold funds until you can inspect the equipment and are satisfied. Also, there are some dishonest brokers out there who advertise as private party sellers...but there are ways to check things out. If anyone is seriously interested, they can PM me and I can help them with this.
Posted by birdie67 (Member # 35994) on :
Just wanted to thank you so much for taking the time to share and explain your healing with mHBOT. It is very interesting and something I am hoping to look into further.
It is always so encouraging to hear of ways that people have healed from this horrid disease. Unfortunately, not everyone get's well from the same protocol and sharing what has worked for others gives me hope.
P.S. Sorry I called you a he Posted by Phoiph (Member # 41238) on :
Birdie...
You're more than welcome...:)
Posted by Pam08 (Member # 19203) on :
Well the OxyHealth company e-mailed me back and the rental rates are extremely expensive so I doubt that would be an option for a lot of people.
Here are the rental rates that they sent to me.
Solace 210: Rent with Purchase Option (includes frame and mattress) $750 per month $250 home delivery $300 return shipping and cleaning/sanitizing fee $1000 security deposit (we cannot accept credit cards for security deposits) Example: Cost to ship out a chamber is $2300 ($750 + $250 + $300 + $1000) Security deposit will be returned 30 days after the receipt of all equipment. All rental monies and return shipping cost may be applied towards the purchase of your chamber.
Respiro 270: Rent with Purchase Option (includes frame and mattress) $1250 per month $325 home delivery $375 return shipping and cleaning/sanitizing fee $2000 security Deposit (we cannot accept credit cards for security deposits) Example: Cost to ship out a chamber is $3950 ($1250 + $325 + $375 + $2000) Security deposit will be returned 30 days after the receipt of all equipment. All rental monies and security deposit may be applied towards the purchase of your chamber.
Vitaeris 320: Rental Chamber Rent with Purchase Option $2150 per Month $400 home Delivery $450 return shipping and cleaning/sanitizing fee $3000 security deposit (we cannot accept credit cards for security deposits) Example: Cost to ship out a rental is $6000 ($2150 + $400 + $450 + $3000) Security deposit will be returned 30 days after the receipt of all equipment. All rental monies and security deposit may be applied towards the purchase of your chamber. Used chambers are typically between $15-16K.
Vitaeris 320: New Chamber Rent with Purchase Option $3000 per month $400 home delivery $6000 security deposit (we cannot accept credit cards for security deposits) Example: Cost to ship out a new chamber is $9400 ($3000 + $400 + $6000) Security deposit (minus return shipping cost and cleaning/sanitizing fee of $450) will be returned 30 days after the receipt of all equipment. All rental monies and security deposit may be applied towards the purchase of your chamber.
* Please note that used chambers are rented/sold based on availability.
Posted by C.P. (Member # 38378) on :
I'm hearing a lot of great stories about HBOT, but when I asked my LLMD about HBOT treatment, he said, "although it can be helpful, it doesn't work well for Babesia."
I would love to know if this is true. Has anyone researched HBOT for Babesia treatment?
If so, please let me know what you've found.
I'm glad some people are finding relief! C.P.
Posted by Phoiph (Member # 41238) on :
Pam...
Thanks for this information.
When I became well through hyperbaric, I started attending the local Lyme support group to spread the word and let people know of this option.
I thought it would be an easy process, but the reality is, as I mentioned in my previous post, rental costs are too steep for most people (even if the payments are interest-free, and go toward the purchase price).
I then started networking with people to help them access more affordable hyperbaric treatment. I've had luck assisting people in finding used chambers (many from private party sales), and people can either get financing (there are companies that provide loans for medical equipment), and/or share the cost/use cooperatively with someone that lives in their area.
This may not be the most convenient way of doing things, but I'm finding that people actually appreciate the support of having someone else to share costs & discuss their treatment with. And, if it is the only way someone can access treatment, I believe it is worth it if it means a chance to get their lives back.
Another thing to keep in mind, is that these chambers are an investment...they have a resale value, so much of the cost can be recouped if one decides to sell.
C.P...Please read my previous post regarding Babesia (5 messages up)...
Posted by soccermama (Member # 35101) on :
Phioph,
Have you heard of this site? If you haven't, can you look into it and see if it is legit?
I am seriously considering a chamber because I would like to see some progress in my treatment but more importantly, just want to get some relief from my symptoms.
I don't understand much about what is needed etc. Can you suggest some sites where I could get educated?
Thanks for help.
Posted by Phoiph (Member # 41238) on :
Hi Soccermama...
I have looked on this site, but have no experience with this vendor.
Since you are at the point where you're seriously considering this, just private message me, and we can go into more detail about what might suit you best, as there are several factors to consider, and it is a decision based on individual needs/circumstances...
I'm more than happy to help you!
Posted by Phoiph (Member # 41238) on :
Soccermama...
I just tried to respond to your private email, but your mailbox is full and I can't send it...
Posted by CD57 (Member # 11749) on :
quote:Originally posted by CD57: Up. Phoiph I just PMed you.....I did 40 dives at 2.4 ATA at a clinic, it helped me to feel better during that time and a few weeks after, but did not help at all with my disease it seems. I?wonder if mHBOT may be different>
My LLMD also said it was contra-indicated with babesia, but also bartonella loves oxygen, or we should say, these two infections use oxygen. It's borrelia that hates it, and in theory that means oxygenating the body would make it unhospitable for borrelia. However.....what does it do for the other two pathogens, who hang out in the RBCs and endothelial tissue where the oxygen is?
Maybe mHBOT is different?
Posted by Phoiph (Member # 41238) on :
CD57...
I replied to your PM on 8/12...did you get it?
In answer to this question...I am repeating what I stated in a previous post above:
Regarding babesia, I have yet to find actual research that supports that mHBOT is contraindicated if you have babesia. I had a full blown case (as well as bartonella), and it was the ONLY thing that worked. I have no babesia symptoms, and I am on no medications.
Even if babesia were to "like" oxygen in vitro, consider that things are very different within the body. Hyperbaric is unprecedented in helping the immune system to recover and function properly...which allows it to fight other infections effectively.
Babesia alone, without the immune suppressing influences of Lyme disease, is rarely an issue (as long as one has a spleen)...it only becomes a problem when the immune system is compromised.
It is more than just chasing "bugs"...it is about putting the body/immune system back in charge...
Posted by dbpei (Member # 33574) on :
Phoiph, thank you for sharing this info to help others. So it sounds like the oxygen, by getting into your tissues and blood stream, helps to strengthen and modulate the immune system.
Before getting well, do you know if you had any of the problems that often go along with lyme, such as heavy metal toxicity, parasites, chronic viruses, and other infections? I would be curious to know the effect of the oxygen treatment on any of these things.
Posted by Phoiph (Member # 41238) on :
dbpei...
I had the litany of chronic viruses/conditions that rear their ugly heads when one's immune system is compromised, including high EB, HHV6, mycoplasma titers, etc.
I also had severe dysbiosis and inflammation of the gut...and gastritis, with lots of undesirable microbes showing up in samples. Some tests suggested parasites, but I'm not sure how accurate they were. It is probably safe to assume that in the condition my immune system was in, I was a "host" to just about anything that cared to take up residence.
Although I didn't have specific testing on heavy metals, I suspect I have high mercury levels because I have had many fillings since childhood.
At some point, I stopped testing for things, as it was always bad news, and there was really nothing I could do about the worsening results, as I couldn't tolerate treatments, supplements, medications, or procedures anymore...(none of which had helped me previously anyway).
My opinion is that many of these viruses, parasites, and toxic conditions are coexisting in our bodies all the time...and when we are "well", our functioning immune system is able to keep things in balance. However, since we live in a very toxic environment...our toxic load may be high to begin with, putting stress on the system just by our everyday living habits. Then, when something, like Lyme, tips the scales over the edge, the immune system can't keep up, and then, like a dam breaking loose, all of the other undesirables have a chance to flourish...
So...what do we do? We usually keep trying to kill the bugs and relieve symptoms...by ingesting MORE toxic substances, ignoring the fact that our immune and other body systems need nourishment, support and repair and a reduction of toxins to be able to gain the upper hand again...or how could any state of health be attained or maintained?
The beauty of hyperbaric is that it does both...it creates an environment that is toxic to the undesirables, but restorative to the system...
It is also just as important, in my opinion, to combine consistent hyperbaric with a gut/nerve healing/rebuilding diet, and to start gentle movement/exercise and increasing as able, to help help move energy through the body. In other words, bringing the good stuff in, and helping the undesirable stuff to come out gently but effectively, as the body can handle it. These 3 things take commitment and patience...as results may not be felt immediately, even if the process is improving things below the surface...
Posted by dbpei (Member # 33574) on :
It's a good thing you didn't give up on this! Thanks again for this valuable information. I wish it was more affordable. If I decide to try this at some point, I will PM you - as you seem to be very knowledgeable about this...
Posted by Phoiph (Member # 41238) on :
Sounds good, dbpei...
I have helped people find creative ways of financing chambers, new or used, and/or pairing up with other people who want to co-own or share costs...so there are options...(again, even though I may sound like it, I'm not a salesperson, nor do I represent any company...just glad to be alive and well and pass on what I've learned...it makes me feel as if my ordeal may have had some "purpose" after all...:)
Posted by Stubman1 (Member # 41135) on :
I was thinking about getting or trying a hyperbaric chamber and stumbled on to this website..
"www.hyperbarics.info"
Now I am somewhat apprehensive.. I really don't need my ear drums blown up. Plus my LLMD said his chamber could go up to 1.5 which seems like a no no if you believe what the aforementioned web site says..
Posted by Phoiph (Member # 41238) on :
Stubman1...
As I mentioned above in this thread, there are caveats about buying and using a chamber and oxygen, just like any other drug or medical device.
There are proper ways to use the equipment, and ways to protect yourself when buying a chamber from a private party, etc.
I don't know what kind of chamber your LLMD has, but it may be designed for clinical use that is approved to go up to 1.5 ATA (and possibly beyond). Although 1.5 ATA is still considered to be "mild" hyperbaric, soft chambers designed for home use are only approved to only go up to 1.3 ATA.
I am more than happy to help you with your questions/concerns/options if you are seriously considering hyperbaric...you can PM me if you like...
Posted by VV (Member # 38828) on :
I have a dear friend of about 20 years who sells the soft shell Oxyhealth chambers. Lance is also like a clearing house of Lyme info. He lives in the Southeast and gave me a good deal. and being a lady, I lucked out that a friend of his came out with an oxygen concentrator & set the whole thing up for me! Honestly I cannot comment on results as I am recommitting cuz I terribly procrastinate on using it.
Here is my friend's contact info. I'm not a selleer, get no referral $, etc.
I have a Respiro, as the Vaetaris seemed a lot more to me, the Respiro is smaller on the inside, but big enough to bring my laptop into and watch online stuff. BTW the ear pressure thing is easy- you just sawllow like you're going underwater. the relative pressure with the softshell "Pods" is like going as deep as the deep end of a pool.
Posted by CD57 (Member # 11749) on :
I wanted to bring something up here.....I was at high altitude again this past week with my family (I live at sea level and went to 6500 ft). I instantly felt better at altitude, almost well in fact. This is VERY bizarre and is the opposite of what my doc said to expect.
I'm hoping Phoiph will drop by here to comment but I had to wonder....since bartonella is my biggest issue, and it is aerobic/oxygen loving....could it have been starved out with lower oxygen in the air last week?
It is enough to make me want to try moving to altitude and seeing what happens. But this reaction would seem that oxygen is CONTRAINDICATED in my situation,
Posted by Phoiph (Member # 41238) on :
CD57...
I don't believe that your feeling an instant improvement at altitude has anything to do with "bartonella being starved out" due to less oxygen.
It is more likely, in my opinion, that other factors might be at play...
1. The barometric pressure changes (lowers) as you increase altitude...some people feel better at different barometric pressures, at least initially.
2. I have read that altitude can have an effect on thyroid function...possibly increasing T-4 levels, and some report even having to adjust thyroid medication at altitude.
***Remember though, if you're considering doing hyperbaric treatment for Lyme, you MUST take your altitude into consideration...
The higher in elevation you go, the more pressure is required in the hyperbaric chamber (to compensate for the lower atmospheric pressure) to achieve the same result...and depending on the elevation, this could put a mild chamber in the "useless" range for treating Lyme, as it will not take you to a high enough pressure to be therapeutic...
Posted by CD57 (Member # 11749) on :
Sorry about the mutiple weird posts, I tried to delete and couldn't.
yes, I have read that too...but have also heard that it takes several weeks for your body to start making extra T3 and the extra pint of blood at altitude...so that couldn't be it...maybe barometric pressure for sure.
So, Phoiph, the 1.3 ATA that you used....was that when you were living in AZ (low elevation)?
Posted by Phoiph (Member # 41238) on :
The air is generally drier at higher altitudes also; some people report more energy when there's less humidity.
My elevation is about 3500ft.
I know of someone who treated at about 6,000 ft. at 1.3ATA with supplemental 02 without success; and by doing the math, this would make sense. He plans to try again when moving to near sea level in CA.
Posted by CD57 (Member # 11749) on :
Sorry about the mutiple weird posts, I tried to delete and couldn't.
yes, I have read that too...but have also heard that it takes several weeks for your body to start making extra T3 and the extra pint of blood at altitude...so that couldn't be it...maybe barometric pressure for sure.
So, Phoiph, the 1.3 ATA that you used....was that when you were living in AZ (low elevation)?
Posted by Phoiph (Member # 41238) on :
The air is generally drier at higher altitudes also; some people report more energy when there's less humidity.
My elevation is about 3500ft.
I know of someone who treated at about 6,000 ft. at 1.3ATA with supplemental 02 without success; and by doing the math, this would make sense. He plans to try again when moving to near sea level in CA.
Posted by lemongirl (Member # 42208) on :
Phioph,
Wow! I am so incredibly impressed by your recovery! So I believe you had depersonalization and derealization (I think I had read in one of your other posts?) I believe I have the same thing currently-things look strange, cars move too quickly, I cannot follow movement or it almost leaves a trail or something behind, I feel out of body, my visual focus is strange-almost like it is zooming in and out of the background and object closest to me if that makes sense). Did you have these things? They are 24/7 for me -though these symptoms have gotten better slowlyyyy (they are very troublesome and still scary today). I always worry they will not continue to get better and my improvements have actually been staggered for quite awhile. That is when I thought I actually may have mold toxicity poisoning (I first became sick in an extremely moldy building I had been living in for a month. I fainted and then all of my symptoms appeared). Do you think it is possible you also have mold toxicity? I wonder...
Also can I ask you what your diet looked like? Do you still keep this diet today? No caffeine, alcohol, sugar (do you eat fruit sugar?), gluten? My diet is very good (in my opinion) though I think it can be better. Are you able to tolerate some of the foods you took out of your diet while you were recovering currently?
Would to hear more about you....
And I cannot thank you enough for coming back to report on your success. You didn't have to do it. And yet you are here, giving us hope.
I am so thankful~
Posted by Phoiph (Member # 41238) on :
Thank YOU, for the feedback, lemongirl...knowing that I might be helping somebody keeps me checking the forums...
I don't believe I went through 8 years of hell and was given my life back to just go on my merry way (although it has crossed my mind to run and never look back :) ...I believe I was granted wellness for a reason, and with that gift goes a responsibility to share my experience in hopes it will be of benefit (it is actually very rewarding)...
Yes, I had severe depersonalization and derealization also...nothing was familiar anymore, everything was distorted perceptually, and it felt like I was perpetually trapped between panes of foggy glass. It was an extremely disturbing way to try to exist, and was only a fraction of what I was experiencing at the time.
All of those symptoms have disappeared completely.
I believe that ultimately, whether or not I had mold toxicity in addition to Lyme and co-infections is a moot point, as hyperbaric treats the common denominators of many illnesses, including "toxic encephalopathies". That is the beauty of it...
In other words, hyperbaric treats hypoperfusion, inflammation, immune dysfunction, supports detoxification, improves mitochondrial function, destroys pathogens, heals neural tissue, promotes angiogenesis, releases stem cells (shall I go on?)...issues common to many diseases...this is why it is so effective for complex conditions involving multiple systems.
Regarding diet...I feel it is a crucial part of recovery and lifestyle...(along with hyperbaric and gradually increasing movement/exercise). When I was really ill, I had so many sensitivities, and my gut was so compromised, I was only able to tolerate about 5 foods for several years. I believe that bone broths were crucial in keeping me alive, and I continue to make and freeze soup made with bone broth and eat it frequently...almost daily. I do not eat gluten, and avoid most grains, but will eat quinoa, for example, on occasion. I eat lots of good protein and fats, grass fed beef, oily fish, eggs avocados, leafy vegetables, fruits, goat's milk dairy in moderation, etc. I recommend whole foods, nothing pre-prepared, NO microwave (destroys enzymes and nutrients)...
I can send you more on diet(or anything else that would be helpful)if you would like to PM me...
Posted by CD57 (Member # 11749) on :
I notice that LymeMD is using mHBOT and reporting good results. He says that patients may have to buy their own chambers.
Would the 1.3 ATA not work at altitude then? Would you have to go deeper?
Posted by CD57 (Member # 11749) on :
I notice that LymeMD is using mHBOT and reporting good results. He says that patients may have to buy their own chambers.
Would the 1.3 ATA not work at altitude then? Would you have to go deeper?
Posted by CD57 (Member # 11749) on :
I notice that LymeMD is using mHBOT and reporting good results. He says that patients may have to buy their own chambers.
Would the 1.3 ATA not work at altitude then? Would you have to go deeper?
Posted by Phoiph (Member # 41238) on :
Hi CD57...
I'm not completely sure I understand the question...so if I don't answer it, please clarify...
I believe LymeMD's blog comment about patients possibly needing to buy their own chambers is in response to my previous post in his blog that emphasizes the need for frequent and consistent treatments over time (which isn't always practical in a clinical setting due to cost and/or logistics).
So, if you're asking if the 1.3 ATA pressure that is provided by a home chamber is sufficient pressure to treat Lyme, the answer, in my opinion and experience is yes, as long as you don't live at high altitudes. At high altitudes, you would have to increase pressure to achieve the same result, and at this time, home chambers are only approved by the FDA to reach a pressure of 1.3 ATA.
In other words, in my opinion, at high altitudes, you would have to seek treatment in a chamber that reaches higher pressures to treat Lyme...
Posted by Tanya R (Member # 41817) on :
Hi all. I've been a lurker for a long time. I am in the process of getting a Mild chamber. I am actually a patient of LymeMD and he suggested I purchase one. I've been in treatment for Lyme and Babesia since 2008. I've suffered from pain, fatigue and chronic daily headaches for over 20 years. I recently switched to LymdMD after 4 years of failed antibiotic, herbal therapies. I felt like I needed a change and what I was currently doing wasn't working. I did complete 20 dives in a hard chamber and felt a bit better, but due to costs I didn't continue. For the $3500 I paid, I could have almost purchased a mild unit. Anyways... I just wanted to say hi and I'm hoping to post my own story of hope from doing mild dives.
Posted by JCarlhelp (Member # 15957) on :
Tanya, Can you give us any information as to what LymeMD is experiencing with his patients using mild HBOT.
Posted by Tanya R (Member # 41817) on :
I have an appointment on Thursday, the 10th. I'll ask him then. Last time I was there he said many of his patients felt much better.
Posted by TNT (Member # 42349) on :
Phoiph, do/did you have PR? Or, do you know if HBOT works for those with PR?
Posted by Phoiph (Member # 41238) on :
Hello TNT...
I have not been tested for PR; I stopped testing for things a couple years ago when I started to improve with hyperbaric, and testing for that parasite was not common at the time.
I do have theories about PR and hyperbaric, however.
PR is reportedly a Babesia/malaria-like protozoan organism that thrives in oxygen-rich blood cells, which may intuitively cause one to suspect that oxygen therapy would promote growth (as many people suspect is the case with Babesia). I do not agree, however, and this is why:
***Hyperbaric oxygen therapy promotes free radicals (i.e., oxidative stress, reactive oxygen species [ROS], etc.) which are damaging to protozoa (fortunately, studies show the body protects itself from this damage through increased production of natural antioxidants).
Here is a quote from a study of the effects of ROS on Babesia in dogs from a veterinarian journal:
"...Many parasites including protozoa are sensitive to oxidative stress. Sensitivity to oxidative stress has been reported in malaria (Rockett et al., 1991), hepatozoonosis (Kiral et al., 2005), tropical theileriosis (Visser et al., 1995), and babesiosis (Stich et al., 1998). Reactive oxygen species (ROS) and Reactive Nitrogen Species (RNS) are powerful oxidants and nitrating species that can inactivate enzymes and initiate the process of lipid peroxidation and nitration, which leads to radical chain reactions that further damage membranes, nucleic acids and proteins (Muller et al., 2003). These processes may ultimately lead to the killing of parasitic organisms (Rockett et al., 1991; Kiral et al., 2005.)..."
***PR reportedly requires iron to thrive, and ROS disrupts the availability of iron to pathogenic organisms
***PR reportedly decreases blood flow and causes hypoperfusion; hyperbaric reduces hypoperfusion, inflammation, and promotes angiogenesis (growth of new blood vessels)
***PR reportedly competes with the body for oxygen, causing fatigue and impaired metabolic activity; hyperbaric improves oxygenation within cells, tissues, fluids, etc.
***PR reportedly creates biofilm; hyperbaric is known to destroy biofilm (this is one of the ways it assists in wound healing)
***Hyperbaric increases efficiency of immune function and detoxification, as well as promoting the release of stem cells, allowing the body to deal with pathogenic organisms as it was meant to do...
I believe that one needs to get out of the mind set of "chasing bugs"...(because there are ALWAYS bugs!)...and instead focus on what will assist the immune system in gaining the upper hand...once the immune system is in charge again, many of these pathogens become a "non-issue"...
Posted by mlg (Member # 35383) on :
Hi Phoiph, I want to thank you for sharing your experience. My homeopathic doctor took classes with Dr K. He told me we can't chase around killing all of the bugs. We need to build the immune system. He uses PEMF, homeopathic, and acupuncture. On my own also done infrared and colonics which really helped for me. So last year I was with s top notch LLMD. Heavy duty protoco. Mepron, zithromax, bacrtim, rotated art and crypto. Then suddenly started to get chronic kidney infections. I did not have time for that. Somebody in one of my support groups referred to homeopathic doc, which turned things around for me
Posted by TNT (Member # 42349) on :
Thanks, Phoiph, I really appreciate your input.
Tanya R, I would be very interested in what your doc has to share concerning HBOT and PR.
Posted by spinning122 (Member # 42223) on :
Phoiph, I REALLY want to thank you for sticking around here to share your experience with mhbot. It really helps those of us who are struggling to read about what has helped others in this terrible journey. I have to admit that on my worst days I log on just to read and re-read what you write as a way to stay positive and keep fighting.
I was bitten by a tick at the age of 4 (nurse sent me away saying it was a spider bite)...and I am now 26 and have been pretty much bedridden for the past six years. I didn't even get to complete college =(
I have been treating for the past two years (Lyme, Babesia, Bartonella, etc.) with oral and IV meds but have yet to see much improvement.
I have started regular HBOT sessions 5 days a week for 90 minutes at 2.4 ATA and will continue for at least a total of 120 dives. Then I plan on purchasing a mild hyperbaric chamber to continue daily treatment.
It is still much too early in my treatment to really notice much improvement (and I am currently herxing so I can't think very clearly right now..sorry if this message is all over the place)but to anyone out there wondering if I have experienced any benefit in this short amount of time (I am going to my 13th dive later today) I want to let you know that I experienced almost immediate relief in pain (I have had severe daily muscle, joint, bone pain especially in the hips and spine for years). From a scale of 1-10 (10 being the worst pain) I would rate my pain at a 2-3 now.
Hope to update in the future with more improvements... and once again, thank you to Phoiph and everyone else in this community for being so encouraging.
Posted by CD57 (Member # 11749) on :
Phoiph I would also be interested in anything you might have to say about bartonella, as it also likes oxygen.
Posted by CD57 (Member # 11749) on :
Phoiph I would also be interested in anything you might have to say about bartonella, as it also likes oxygen.
Posted by Phoiph (Member # 41238) on :
Hi spinning122...
Thank you very much for the comments. I promised myself that if I got well, I would do whatever I could to help people get out of this hell-hole...and am now on a mission...
I know exactly what you mean about needing daily reassurance...I was the same way, but it was almost impossible to find. This is why I keep posting...people need to know there IS a way out of this nightmare.
I am really glad you are doing hyperbaric...good for you!
I do have a concern about the high pressure you are using, however. Please read this article by Dr. Paul Harch (who has been studying hyperbaric for over 20 years), discussing how studies show that more pressure is not necessarily better for neurological and many chronic conditions. It may give you another perspective:
The hyperbaric practitioners I know are also using this mild pressure (1.5 ATA) protocol. (Dr. Harch also has a website: HBOT.com, and a book entitled "The Oxygen Revolution", which includes compelling SPECT scan results...).
I would really like to discuss this more with you...I tried to private message you, but I think you may have that option turned off...
Posted by Phoiph (Member # 41238) on :
CD-57...
As you know from our conversations, I had severe bartonella (and Babesia) for 8 years, and was unable to treat with any mediations or nutriceuticals for over 5 years prior to mHBOT. I am now well and on no medications.
As I have mentioned in previous posts, in my opinion, it is not about "chasing bugs", it is about allowing the immune system to come back "online" so it can handle these infections.
Hyperbaric not only provides an inhospitable environment for these organisms, it supports the immune system so it can start doing its job again, releases stem cells, rebuilds neural tissue, detoxifies...I could go on...
When oxygen is administered under pressure, it reacts differently in the body than you may think. It generates "free radicals", or "reactive oxygen species (ROS)", which fight infections. Our bodies also do this naturally in response to infection, if the immune system is working properly. The body also produces natural "antioxidants" to prevent damage to our own cells from this process.
So, with hyperbaric, even if Bartonella were to "like" oxygen in vitro, the hyperbaric oxygenation process works very differently...it does not provide more oxygen (fuel) to these organisms, it actually creates an inhospitable environment for them, while supporting the immune system and helping the body to heal in the process...
Posted by CD57 (Member # 11749) on :
Phoiph, here is something I wonder.
As you know I did 40 HBOT dives at 2.4 ATA, what the llmds were ordering per Dr B trials. I felt pretty good whilst doing them but gains were lost when stopped.
Do you think you could quit doing them daily now and be fine? I am wondering if it's a long term/life thing or if people stop.
Or maybe just thinking too much. I am still strongly considering this therapy but as you know it's a huge commitment requiring family members to be on board. Posted by CD57 (Member # 11749) on :
Phoiph, here is something I wonder.
As you know I did 40 HBOT dives at 2.4 ATA, what the llmds were ordering per Dr B trials. I felt pretty good whilst doing them but gains were lost when stopped.
Do you think you could quit doing them daily now and be fine? I am wondering if it's a long term/life thing or if people stop.
Or maybe just thinking too much. I am still strongly considering this therapy but as you know it's a huge commitment requiring family members to be on board. Posted by Phoiph (Member # 41238) on :
CD57...
As we discussed, if I had stopped at 40 sessions as you did (and I almost did), I would not have recovered...
It took about 60 consecutive sessions to notice a change (not necessarily an improvement), and it was 2 steps forward, 1 back from there, but always moving in the right direction.
I thought I was well after the 1st year...but I have continued to make improvements since. I am now up to just over 2 years; about 750 dives.
I recently was without my chamber for 5 weeks due to a repair issue with the compressor (the repair didn't take that long; the shipping company dropped it on the return trip and it had to be re-repaired). The good news is that I had no feelings of regression whatsoever. I was actually traveling at the time and felt totally fine.
That said, would I voluntarily quit the chamber? The answer is "no"...because of the incredible health benefits above and beyond what it does for Lyme. Knowing what I know now about hyperbaric, I would own an use a chamber regularly regardless of whether I had Lyme or not...
Posted by 2roads (Member # 4409) on :
What about for an adolescent?
Any thoughts on this?
Thanks-
Posted by Phoiph (Member # 41238) on :
2roads...
Mild hyperbaric is used with younger people and children all the time. It is also frequently used for children with autism.
My observation is that younger people tend to respond more quickly, but, of course, this depends on many variables and circumstances...
You will need a doctor's prescription for purchase/use of the oxygen concentrator and chamber.
Also, since hyperbaric increases metabolic function, it may change how one responds to medication, so this needs to be monitored...
Posted by 2roads (Member # 4409) on :
I wouldn't want him more hyper than what he is.
Is that what you mean when u say it increases metabolism?
Posted by Phoiph (Member # 41238) on :
2roads...
When I stated that hyperbaric "increases metabolic function", I didn't mean that it would make one more "hyper", although many people report an improvement in energy and stamina.
Hyperbaric improves metabolic function at the cellular level, allowing the body systems to work more efficiently overall.
Posted by TNT (Member # 42349) on :
Phoiph, you mention an oxygen concentrator. I see from the information I have looked at that in a clinic setting an oxygen mask is often used inside the chamber.
But you can use the chamber (like the ones for in-home use) without one. Is this a significant difference?
Is the added oxygen (mask) a big improvement over just the mild hyperbaric chamber? Or is this addition unnecessary? I hope this question makes sense.
Posted by Phoiph (Member # 41238) on :
TNT...
Yes, there is a big difference between using a mild chamber with and without supplemental oxygen.
It is important to reach high enough oxygen saturation in the tissues to disable/kill the Lyme spirochetes, and for other healing reactions to occur. One needs the combination of supplemental oxygen (i.e., from an oxygen concentrator) PLUS increased pressure to achieve this.
The mild hyperbaric chamber is used without supplemental oxygen for other applications (e.g., altitude sickness), but for Lyme, in my opinion, supplemental oxygen is a necessity.
It is also important to invest in a concentrator that will work properly with a hyperbaric chamber...I have more information/resources for this (and chambers options, etc.) if you'd like.
Oxygen concentrators are sold separately from chambers, and you will need a doctor's prescription for purchasing both.
Please feel free to PM me about this...
Posted by Carmen (Member # 42391) on :
I have found ways to purchase oxyen in tanks to be refilled without perscription if anyone wants to know that.
One thing for sure, if the oxyen is administered in a hot sauna it will penetrate the skin. One cannot get too much oxyen. EWOT therapy is aother adjunctive approach. None of this may cure but it may help.
Posted by Phoiph (Member # 41238) on :
Carmen...
The good news is that you don't need oxygen tanks with mild hyperbaric...you use an oxygen concentrator instead.
As far as hyperbaric is concerned, I have to disagree...one CAN get too much oxygen.
Because hyperbaric treatment produces free radicals (necessary for destruction of pathogens), our bodies must increase production of natural antioxidants to prevent damage to our cells (which the body does, as research shows).
If we upset that balance with too much oxygen, the body may not be able to keep up its antioxidant production to counteract the free radicals, and oxidative stress can occur.
Oxygen is considered a drug, and hyperbaric treatment is a VERY powerful treatment that is commonly misunderstood and underestimated...
Posted by TNT (Member # 42349) on :
Phoiph,
I PM-ed you. Now that I see your recent post, I have another question.
If oxygen produces free radicals, I wonder if this could be a problem for patients with methylation troubles?
The body may not be able to keep up with the production of natural antioxidants. (ie : like methyl donors for tissue repair)
I don't know very much about this, but I'm learning, so maybe it wouldn't be an issue if one has their specific defects covered and are taking plenty of antioxidants. ???
Maybe it would be safest to just use a chamber without the concentrator, at least at first.
Posted by Carmen (Member # 42391) on :
I guess I would have to look into this more. Oxyen when delivered in though just the lungs as in normal breathing, there seems to be no upper limit for most people for measured periods of time
But when oxygen is artifically forced into the body as with pressure that may be different I guess.
When people us ozone therapy the ozone pushes up the capacity for detoxification. There is little hope for me to ever use this hyperbaric method anyway so I should probably not post on this thread.
Posted by Phoiph (Member # 41238) on :
Hi TNT...
I answered your PM...
I am also very interested in methylation. I have not been tested, but suspect I have some form of the mutation...I may get tested to possibly shed some light on the hyperbaric/methylation relationship.
The thing about hyperbaric, is that it is hugely supportive of detoxification...which I suspect greatly assists those with methylation issues.
I am in contact with a 21 year old woman who has had Lyme most of her life. She also has a double methylation defect, and is working with a naturopath who specializes in this, and is treating her with supplementation/diet.
She recently started mild hyperbaric...and has had a remarkable shift...she went through an intense symptom flare, and is now seeing huge improvements. Of course, it is early in her treatment, and I suspect she will have many more ups and downs, but she is feeling very hopeful for the first time...
You could consider using the chamber without additional oxygen at first to get used to the pressure, then add oxygen in steps until you reach treatment level. In my opinion, you will ultimately need the additional oxygen to treat Lyme...
Posted by TNT (Member # 42349) on :
It will be helpful to hear of your friends progress, Phoiph. I hope it continues to help her.
Maybe she would be able to post to lymenet herself, even.
Those of us who deal with methylation troubles need all the help we can get with these diseases! So, yes, let us know if you have some of the snps if you get tested.
Posted by Phoiph (Member # 41238) on :
Yes, I will let you know if I decide to get tested, and what the results are...
Posted by CD57 (Member # 11749) on :
Up....spinning, how are you doing?
Posted by TNT (Member # 42349) on :
ChelseaSmile...
How, how are you feeling at this point?
Posted by spinning122 (Member # 42223) on :
CD57, I PM'd you a long response to my progress Posted by spinning122 (Member # 42223) on :
Wow Lyme brain, I meant "about my progress"
Posted by CD57 (Member # 11749) on :
Thanks can't wait to read it!
I have another question about ATA....my doc and I discussed the other day and he said I would need 1.8 ATA...I have also seen 1.5 ATA mentioned here by Phoiph. I don't think the home chambers can go up this high, does anyone know? I am researching this now.
Posted by spinning122 (Member # 42223) on :
CD57, home chambers are not designed to go up to such pressures. I believe 1.3 ATA is the max... LymeMD (the doc who blogs) said that he had supplemental valves that bring it up to 1.5 ATA but I wouldn't alter my home chamber...it's not worth the risk to me.
I have just started doing mHBOT with a concentrator and would like to know more about your progress as well, as this may help me stay positive about it and would be helpful to see any symptom similarities.
thanks, TNT
Posted by spinning122 (Member # 42223) on :
TNT... PM'd you :-)
Posted by Phoiph (Member # 41238) on :
CD-57...
You know from our conversations that I recovered using mild hyperbaric (home chamber) at 1.3 ATA (with supplemental oxygen via oxygen concentrator).
1.5 ATA and under is considered "mild" hyperbaric. This is the pressure that much research has been done on neurological issues, and found to be safer and more effective for many neurological and chronic conditions (See Dr. Harch's research/book/website: hbot.com ).
The neurologist that I am familiar with who runs a hyperbaric clinic says the difference between 1.5 ATA that is typically used in clinics, and 1.3 ATA reached by home chambers is negligible.
Can you enlighten me as to what your doctor's rationale is for saying you would need a higher level of 1.8 ATA? Maybe you have some sort of other condition that you haven't mentioned, as it is not a commonly recommended treatment level...(?)
Posted by CD57 (Member # 11749) on :
Hi, No he just said "studies" when I asked him and did not elaborate. he believes that some of my chronic symptoms, possibly the depersonalization and ever increasing neuropathies and fasciculations and memory/cognitive issues, may be due to treatment / drug toxicity and not the infections, as I have gotten much worse in these areas since starting treatment. Some of the meds like Tindamax and Flagyl he suspects as neurotoxic in my case (although I personally thought Rifampin was the worst in that regard).
So in addition to infection, which is definitely still there, I am dealing with healing the CNS. I suspect that is what he meant by my needing higher pressure.
Posted by TNT (Member # 42349) on :
CD57...
Sorry to diverge from the topic, but your case sounds very similar to mine. So I have a question. Do you have a lot of subcutaneous nodules-ones that would normally be considered Bartonella?
I have them in my muscles and along my bones, and are getting worse. I believe they are infection related, but sometimes wonder if connected with toxicity.
If you have these, did your earlier 40 dives make any difference with them?
Posted by Phoiph (Member # 41238) on :
CD57...
If your doctor believes that your chronic symptoms are more "due to treatment/drug toxicity and not the infections", then that is all the more reason to go "low and slow" (i.e., mild hyperbaric) and avoid the higher pressures.
Higher pressures can be toxic for some people, and can actually result in regression in some conditions. Research has shown that lower pressures are safer and more effective for many chronic neurological conditions, and more is not always better in these circumstances.
Please read this article by Dr. Paul Harch, which illustrates this point:
Hi TNT, no I do not have nodules. My symptoms are primarily CNS and heart related.
I felt great during my 40 dives, but as with most who post about this, the gains, if that is what they were, did not last. I know several folks who did 100 dives at 2.4 and it did not help them conquer the infection although it did seem to help with symptoms while they were doing the dives. I suspect that like Phoiph, people who are quite ill will need to do this for a long time to see any kind of turnaround, and then keep going past that point to hope that the gains hold.
Posted by TNT (Member # 42349) on :
Thanks CD57,
I hope you can successfully get at your Bartonella infection. Maybe long term mHBOT would be helpful for this? It sure gets depressing when the typical treatment for most people doesn't work with yourself. I feel for you.
Posted by spinning122 (Member # 42223) on :
I believe some were wondering if/how HBOT helps with detox...
From an interview with the President of the International Hyperbaric Medical Association (although it is not specific to Lyme treatment I still found it enlightening):
"Does hyperbaric have any therapeutic benefit in so far as helping with detoxification?
Well, it certainly seems to. By opening up the circulation into damaged tissues that alone helps with the detoxification process and certainly by normalizing various enzyme systems it helps with the detoxification process because a metabolically healthy cell will be able to participate in the required chemical steps to detoxify."
Just a question for those of you with your own chamber at home...
Is the air compressor just as loud as any air compressor?
I'm asking because I live in an apartment and I'm pretty sure my neighbours would be bothered by a regular air compressor.
Thank you.
Posted by Phoiph (Member # 41238) on :
It is a relatively small compressor, and if working properly, not as loud as the larger ones you may be used to hearing.
If necessary, you could place it in a room without walls that are shared with neighboring tenants, close doors, and/or place sound-dampeners (like pillows, blankets, etc. around the compressor (but definitely far enough away so they wouldn't impede air flow)...
The Oxygen concentrator also makes noise, but it is quieter than the compressor.
Posted by JCarlhelp (Member # 15957) on :
If any help, we have in 1 upstairs room and cant hear in anothet
Posted by GretaM (Member # 40917) on :
Thank you. Both those responses are very helpful.
Posted by Toni L (Member # 42785) on :
I spoke to a rep at Oxyhealth concerning the altitude question. He said the only time anyone had a problem was someplace in Colorado at 9,500 feet. I live at 5,000 feet so I was concerned because I just bought a used Respiro with concentrator for my very ill daughter and son.
Posted by JCarlhelp (Member # 15957) on :
Some years ago he was totally against my posts about glutathione IV and mild hbot. Sheesh.
Posted by CD57 (Member # 11749) on :
Sounds like things have c hanged Oxygenbabe. Could you go to that thread and post your experience (what is it, by the way? Did you improve entirely with mHBOT like Phioph?)
Posted by oxygenbabe (Member # 5831) on :
They help me--I have a whole protocol. It's not a cure and I do it about twice a month. Although occasionally more often if something is bothering me (injury or muscle strain)
Posted by TNT (Member # 42349) on :
oxygenbabe,
Are you referring to the IV glutathione or hyperbaric sessions when you say twice a month?
If you are by chance referring to hyperbarics, have you done it regularly in the past for an extended period of time and found it not any more helpful than doing it twice monthly?
Posted by lymeboy (Member # 24769) on :
How much does it cost to treat every day for 60 days?
Posted by oxygenbabe (Member # 5831) on :
TNT, both. I originally, six months into lyme did a month of deep dive. Unfortunately this was in a multichamber with hood without any protection to my eyes and I had irreversible eye changes because of the oxygen toxicity across the cornea at 2.4 ata. I advise anybody to consider this--some will be vulnerable, some won't. Consider closing eyes, using a mask, or using lower pressures than 2.4 ata which puts a lot of 02 into the system.
I did nothing more for 18 months and completely relapsed, so I did 2 more months at 2.4 ata but I did it with eyes closed, which seemed to make a big difference to the eyes.
After that I realized that deep dive was only temporary, and I found out about mild hbot and got one. At first I used it more often. Over time I created a self designed protocol by experimenting. It's far from perfect. But it makes a huge difference.
In an ideal world i'd do a deep dive chamber at 1.5-1.75 for 1-2 months with eyes closed followed by a mild chamber at home for maintenance. Or rather, had that all been available and I'd known about it then.
I think its a highly underutilized therapy, probably because it's expensive. It's adjunctive, though. It doesn't kill borrelia, just suppress. It also helps undo damage to endethlium, blood vessels, hypoxia, free radicals etc.
Posted by oxygenbabe (Member # 5831) on :
I should add, I don't see it as generally curative. It's more like a support. It allows one to function (my particular protocol is low dose and geared to me, including dietary and significant lifestyle changes). I have all the Buhner herbs, which I need to try.
Posted by CD57 (Member # 11749) on :
Interesting that you say it is not curative, oxygenbabe. Why would you think it is not?
Did you have co-infections by chance Oxygenbabe? How did you do with those?
Posted by GretaM (Member # 40917) on :
I priced out 40 dives at an HBOT clinic.
They just do HBOT; the clinic is solely HBOT therapy.
$8500 for 40 dives.
Seems like an awful lot for only 40 dives.
It seems it would be more cost effective to buy a unit so one could dive as much as required for some relief.
Posted by Phoiph (Member # 41238) on :
Oxygenbabe...
I respectfully disagree completely.
Hyperbaric is extremely powerful, and is most definitely curative; my case in point.
It has to be used consistently, frequently, and for an extended period of time, and this is where I have observed treatment failures can occur...people give up too soon, or are not consistent in their treatment.
Please refer to this study on how reactive oxygen species (ROS), produced by hyperbaric treatment, affect Borrelia:
A quote at the end of the study reads, "...This indicated that Borrelia membranes can be damaged simply by exposure to physiologically relevant concentrations of dissolved oxygen..."
Hyperbaric is not just an "adjunctive", or "supportive" treatment, or "suppressive" by any means...on the contrary!!!
If you read this entire thread, you know that I had one of the most severe cases of neurolyme that LLMD's had seen...and was deemed an "antibiotic failure" and left for dead...but I have my life back completely...with NO adjunctive therapies (other than homeopathy prior to starting mHBOT), restrictions, or medications...I consider myself "cured" thanks to mHBOT...
[ 10-05-2015, 05:03 PM: Message edited by: Phoiph ]
Posted by CD57 (Member # 11749) on :
yeah it really is inspiring Phoiph. Do you know anyone else who was as severe a case, multiply coinfected, who has stuck with mHBOT like you and is better?
I am determined to get a chamber, as I just read the 2013 ILADs notes today which say "bartonella is antibiotic resistant and immune evasive". Great, so if it is going to kill you, like it will me, I have nothing to lose by trying this!
Posted by spinning122 (Member # 42223) on :
Thanks for the link to that study, Phoiph...that was exactly what I was looking for.
Planning to print it out and bring it to my LLMD...and hopefully convince others that pharmaceutical drugs are not the only way to attack this disease.
Posted by Phoiph (Member # 41238) on :
Hi CD57...
Yes, I do...particularly the person who convinced me to continue with mHBOT after 40+ dives, when I thought it wasn't working. He not only saved his own life with HBOT, but I credit him with saving mine as well...
There are also a number of people who have started mHBOT more recently, and are experiencing promising changes thus far...
On the flip side, do you know of anyone who was as severe a case, multiply coinfected, and who has stuck with the protocols that you (and others) are discussing/practicing/promoting on this forum and have become completely well?
Just wondering where they all are...and why they're not on this forum coaching others?
Posted by CD57 (Member # 11749) on :
yes, good point Phoiph....the answer to your question is "NO" !
How is the young woman doing that you have been in touch with?
Posted by Phoiph (Member # 41238) on :
I spoke to the young woman's mother a few days ago...her daughter has recently enrolled in college (after being homebound for years)...
She still may have a rocky road ahead (2 steps forward, one back), as she hasn't been doing mHBOT for an extended period yet...but she finally feels hopeful that she is getting her life back...
Posted by CD57 (Member # 11749) on :
WOW! that is spectacular!
Posted by Phoiph (Member # 41238) on :
Agreed...I took a video of her before she started mHBOT, then another more recently...the change is beyond amazing...
Posted by TNT (Member # 42349) on :
If this is ChelseaSmile, would she be able to post some more specifics on how she feels she is being hit by it (what symptoms became more problematic at first).
Are some symptoms flaring, some symptoms improving. How long has she been doing the dives to date? A few specifics on what has been par for the course.
I know that I get an episode almost every dive where I feel like I can't breathe and get a little lightheaded, even though I am breathing oxygen from a concentrator.
There are some other interesting things that would be worth mentioning, but I would really like to hear other's experience so I may compare notes, and not feel like this or that was mentioned because I mentioned it.
I guess I'm looking for these specifics at this point since I am analyzing my responses (good or bad) and hoping it will begin to take the shape of a turn around. Though, I'm not giving up - I'm sticking to it on a daily basis.
thanks for your replies
Posted by Phoiph (Member # 41238) on :
Hi TNT...
As far as I know, she doesn't regularly follow this forum...but I will send her the link so she can respond if she chooses.
Just a comment on your post...I believe documenting your symptoms briefly on a daily basis when doing mHBOT is VERY important, but I discovered that trying to "analyze" what is changing on a daily basis is not a very accurate way to interpret progress. It is better to compare the changes that occur in, say, 2 month intervals. These are the more lasting patterns that show an overall "trajectory", rather than the day-to-day ups and downs...
Posted by CD57 (Member # 11749) on :
TNT, great! you are diving? what ATA? did you decide to go to clinic or purchase/rent?
Sorry if you posted this elsewhere, I took a quick look and couldnt find it. Yay!
Posted by TNT (Member # 42349) on :
Hi CD57,
I am using a home chamber (1.3 ATA). Some may consider what I am using contraband, but I have been doing hour sessions daily for 3+ weeks now, with a concentrator.
I am currently dealing with a "slide" that is related to increasing my daily dosage of Plaquenil. It seems every time I try treating protozoas more it backfires with increasing neuropathies, coordination troubles (especially with walking), joint deterioration, more nerviness, mind fog, twitching, vibration sensitivites, etc. It's just terrible!! My nervous system gets so flared up I cannot relax or barely sleep.
I don't know what is happening, but feel it is related to bart. or lyme coming to the surface. I don't think it is related to mHBOT given the circumstances with the meds. If anyone has a clue, or had a similar experience, please reply or PM me!
I plan on continuing the hbot as long as I am physically able to climb in and out. I just hope this is helpful for me.
Posted by CD57 (Member # 11749) on :
TNT, I had a similar (minus the walking and joint stuff) flare happen with Plaquenil. I had to quit. My doc told me later that he has found that Plaquenil is really hard for some people to take - ie; neurotoxic. I know that when I was on it, I had terrible dreams, crying, extreme nervous agitation. Come to think of it, I have had a similar exp on most if not all abx.
So my point is is may be the plaqueinil itself that is bothering your system, rather than a kill off etc. Maybe go back to the smaller dose rather than increasing? I assume your doc wrote for 400mg/day?
Posted by CD57 (Member # 11749) on :
Also of course depending on what you are taking it with, it could be as Dr H book says, alkalinizing the intracellular compartment so your other meds can work better. I get the impression that is why he uses it, less so for a killing aspect.
Posted by mbdq (Member # 26277) on :
I just brought this thread back up so we can report on our progress with mHBOT
I am at 50 hours. Huge flare in symptoms with some nice progress in some areas.
Looking forward to hearing more about others experiences.
Posted by S13 (Member # 42830) on :
I find this a very interesting topic. I am also battling with "MSIDS" (lyme, babs, bart, etc.) and feel that antibiotics do not provide enough improvement. mHBOT seems like a promising add-on to my therapy.
Im very new at mHBOT, never used it before, so i am trying to figure out some of the details.
quote:Originally posted by Phoiph: The oxygen concentrator must be of a specific power to be used effectively with a hyperbaric chamber, but has the advantage of not needing refills of oxygen cylinders, etc.
So, how do you know that an oxygen concentrator will be powerful enough to be used with mHBOT? Do you need a certain amount of airflow to compensate for the additional air pressure?
Posted by oxygenbabe (Member # 5831) on :
Phoiph, have you stopped all sessions for six months or more? If it's ongoing you're simply suppressing. There was a study in guinea pigs where they infected them with borrelia then built them mini hbot and did sessions at 2.4 ata. TOtal suppression, but after 3 months of no hbot, total recrudescence.
Posted by oxygenbabe (Member # 5831) on :
In addition, 1.3 ata in a mild chamber with a mask at about 50-60% 02 (that's what you get with that type of plastic leaky mask and a flow of about 8 lpm because of pushback from the chamber on a 10 lpm concentrator, you won't get enough into deep tissues or ligaments to necessarily damage--only suppress, and you won't do bupkiss to cysts and "seeds" (that syphilis and borrelia throw off).
It's a very useful therapy, but I am think you will need it ongoing.
Posted by CD57 (Member # 11749) on :
well, I'll take suppression too, as long as with the co's it works also!
Posted by TNT (Member # 42349) on :
Amen to that!!
Posted by oxygenbabe (Member # 5831) on :
Yes, nothing wrong with suppression that's quite right. And much more benevolent than longterm antibiotics.
Posted by Phoiph (Member # 41238) on :
Oxygenbabe...
You mentioned the guinea pig study before on another thread, and I asked you if you had a resource...but didn't get a reply. Do you have a link? I have been researching hyperbaric intensely for over 2 years and haven't come across it, but would love to read it...
In terms of "recrudescence" or "suppression"...consider the study done by Texas A&M on 91 subjects with CDC positive Lyme treated with HBOT. 84.8% showed "significant improvement", and after discontinuation of treatment, "many subjects continued to show improvement for up to 8 months. Follow up, from 6 years to 6 weeks, showed that the benefit was sustained in approximately 70% of patients..." (from the Textbook of Hyperbaric Medicine, K.K. Jain).
Remember also, that it's not just about killing spirochetes (which oxygen does...see "Fife" study, for example), of equal importance is that strengthens and normalizes the immune response, which is 100% necessary to become well and stay well...
Posted by Phoiph (Member # 41238) on :
S13...
You need an oxygen concentrator that has enough PSI that can handle the backpressure from the chamber.
The unit that I prefer has 20 PSI (pounds per square inch), and 10 LPM (liters per minute) oxygen flow. The oxygen purity is +-93%.
20 PSI is a little higher PSI than you actually need for use with a home chamber (which is pressurized to 1.3 ATA, 4.2 PSI), but there will be less stress on the concentrator over time and it will last longer...
Posted by JCarlhelp (Member # 15957) on :
A little bit on ATA. All of Oxyhealth current soft shell models are 1.3 ATA unless tampered with which would be a stupid thing to do. Oxyhealth does make a hard chamber that goes higher but $70K. I think they are coming out with a soft chamber that can go a little higher. The lyme doctor that can go higher uses a http://www.newtownehyperbarics.com/. Best bet in my mind is a used Oxyhealth with guidance from Phoiph who makes no money off helping people. I bought a used Vitareus with compressor for $7,000. It is a 2006 but is working find. I am about 20 dives in. Definately helps inflamation and muscle pain. I will keep this board updated but as I have said before I am not as sick as most of you. I am also doing photon treatment alongside. We will all know more in next few months. I have 5 family members including my children that have fought this awful disease on and off for 17 years. I don't really care so much if there is a cure or not, just an equilibrium of immune system and pathogens just like chicken pox. And of course I would like to have healthy grandchildren some day but no need to get into the sexual transmission issue as I have read all the different opinions.
Posted by S13 (Member # 42830) on :
I agree. If it requires ongoing therapy, but it is able to give you your life back, then it is worth every penny!
I wish all here good luck with this and hope there will be more success stories like Phoiph's.
I have been looking around for oxygen concentrators and was hoping to get away with one of the cheaper ones, but i guess because of the hbot backpressure that will not be possible. I see I can get something like an Airsep Intensity 10L here. I suppose this will do then? 10L, with 20psig outlet pressure.
Also what kind of headpiece do you all use? I see one could use a nose tube, or full oxygen mask. What would be more sufficient in terms of oxygen concentration?
Posted by JCarlhelp (Member # 15957) on :
I use full mask made by Salter labs. Very inexpensive.
Posted by Phoiph (Member # 41238) on :
Hi S13...
I have a resource for the Airsep 20LPM 10PSI that is $1350 new, which is the best price I have found.
I also can get a discount on new/used chambers from the manufacturer...part of which I pass on to the buyer, the other part is kept on account toward chambers to be placed in the community for qualifying people that can't afford treatment (I take no personal "cut")...
Full masks deliver more oxygen than the nose prongs.
Posted by Phoiph (Member # 41238) on :
Correction, 20PSI, 10LPM...
Posted by CD57 (Member # 11749) on :
Anyone want to address the Dr J.S. study on patients doing HBOT with babs and bart? Neff had brought that up on another thread.
Posted by S13 (Member # 42830) on :
Sure, if you have a link for that study?
Phoiph, ive send you a PM!
Posted by CD57 (Member # 11749) on :
I don't....it was mentioned on another thread, I think it was an informal observation noted in Dr JS's books....
Posted by oxygenbabe (Member # 5831) on :
I'm not on lymenet often so not seeing some of your posts, Poiph. Since it's nearly 2014 and my first hbot was in 2001 (January), I researched it very intensively. I was speaking with a researcher. I spoke with every major researcher in the country (not clinic owners) and did thorough investigation. I am not going to argue with you. After all my research, it's clear to me it is suppressive, even at 2.4 ata, and not borrelecidal (sp?). That doesn't mean it's not really useful. It's great adjunctive therapy. And in fact I think 2.4 ata is just too high, for the benefits. I'd do under 2.0 ata anyway.
Posted by oxygenbabe (Member # 5831) on :
A nonrebreather mask supposedly facilitates oxygen uptake but I don't like them. A typical plastic mask used in the Oxyhealth and other similar chambers leaks, so it provides about 50-60% oxygen. A cannula might work a little better, who knows, but probably similar.
You must contrast that with a professional chamber at 50 lpm with 100% oxygen from tanks.
Posted by oxygenbabe (Member # 5831) on :
Fife did one small study and later admitted it was not definitive. I don't put much truck in Fife's small study.
Posted by oxygenbabe (Member # 5831) on :
Fife did one small study and later admitted it was not definitive. I don't put much truck in Fife's small study. As to the other study, were they on antibiotics at the time? Most people doing hyperbaric in clinics use it adjuntively, added on to antibiotics, both IV and oral. I didn't because I can't tolerate antibiotics.
Anyway, no point in arguing. Have said my view after 13 years. I like the mild chambers. I think they need to be used longterm and almost always are adjunctive. Of course everybody is individual in their immune system strength and in the strain(s) of borrelia. Some are mild. Some are self limiting. Some are really virulent. Miramatoi is known to be more virulent for instance. Etc.
Posted by Phoiph (Member # 41238) on :
Oxygenbabe...
I'm not interested in arguing either...we are all here to learn from each other.
For that reason, I was just wondering if you had a reference for the study you mentioned (twice) or other research resources related to your viewpoint that hyperbaric is suppressive, only an adjunct, and does not kill Borrelia.
I am already well, and don't need any convincing about hyperbaric, but others might...and my goal for volunteering my time here is to provide as accurate a picture as possible so that people can make informed decisions...which I believe means backing up strong statements with resources whenever possible...
Posted by S13 (Member # 42830) on :
If so, im not sure this study applies to mHBOT. The study uses greater pressure (2.0-2.85ATA) which is not necessarily beneficial for lyme treatment as Phoiph previously mentioned: http://www.netnet.net/mums/Harch2.htm Posted by CD57 (Member # 11749) on :
yeah I think that's it. Thanks!
Wait a second....question....if you buy a mHBOT chamber and O2 concentrator....do you still have to wear a mask inside the chamber???
Posted by JCarlhelp (Member # 15957) on :
Yes
Posted by CD57 (Member # 11749) on :
OMG, so you are lying inside the chamber with a mask on? wow. Any way out of this? I did not have to wear a mask when I dove at a clinic at 2.4 ATA but they had a hard shelled chamber so perhaps that is why?
Posted by JCarlhelp (Member # 15957) on :
You need to wear a mask to breath a higher level of oxygen. It really isnt bad at all. Watch a football game and you will see players doing this on the sidelines after a long run. You are using an oygen concentrator. The air inside the chamber is not 100% oxygen.
Posted by CD57 (Member # 11749) on :
oh i see. then how do you know you are getting up to 1.3 ATA inside the chamber? I thought that was the whole point, to have your whole body bathed in 1.3 ATA, not just breathing in the equivalent?
Posted by JCarlhelp (Member # 15957) on :
1.3 is the equivalent atmospheric pressure provided by the pressure equivalent to 11 feet under water. Even without the supplimental o2 provided by oxygen compressor the normal oxygen of ambient air is purported to increase. The compressor provides more o2 to chamber both through mask and by definition of supply. This is why it is important to get a compressor that delivers enough psi and lpm. At least 8 lpm. There are a number of them that are only at 5 lpm. Important spec if you buy a used unit albeit you can get a new concentrator meeting specs for around $1300.
Posted by oxygenbabe (Member # 5831) on :
Phoiph, it's not a viewpoint, it's informed by research--and it's simply a fact imho. As to you're well, I assume you are doing ongoing treatments. If you stop for six months entirely and feel just as good, please report it here, that will be a novel report and interesting.
Borrelia are microaerophilic, not anaerobic. They also exist in several forms and some are pretty much inert metabolically. Those would be cysts and what seem to be granules/seeds (like syphilis, ketes have been seen throwing off these granules/seeds which might be comparable I suppose to eggs). In those forms they are more resistant to any killing or suppressing mechanism. Active borrelia can be slowed or suppressed by hbot, but there is no evidence they can be killed especially in the tissue reservoirs where they often nest, which even with hbot are low oxygen (bone, ligament, tendon, etc). Just as refractory osteomyletis usually requires hbot at 2.4 ata plus antibiotic therapy (and *those* bacteria are anaerobic generally, not microaerophilic), chronic lyme may be viewed in the same way.
You might say that you are in remission with continued treatment, and that you were one of the lucky ones, since a mild chamber alone with no other treatments doesn't generally lead to remission. However, your immune system might be strong and you might have a milder strain than some. There are a variety of strains and some are far more disabling than others--even though they all might make someone sick.
You need to do your own research, I don't have time and don't have references at the ready from 10 years ago, when I was in NY. You need to do your own research at hyperbaric medicine centers. You could call some, at universities with research facilities and doctors that specialize, to get a sense of what 1.3 ata with about 50% oxygen at about 8-10 lpm per minute would do in terms of saturation of which tissues to what extent.
'Nuff said. I've always said hbot is underutilized although because it's only suppressive, I don't like the higher pressures that only one small study by Fife set out. I think a month or two of 5-7 days at 1.5-2.0 ata is sufficient, with antibiotics if you can, and then maintenance with a mild hbot. I can't address this again I just don't have time.
Posted by oxygenbabe (Member # 5831) on :
I should add, the cysts will degrade over several years. Nobody knows how many but at some point they won't be viable. Cysts can give birth to multiple daughter spirochetes. And of course those spirochetes can encyst (by wrapping around themselves essentially) and those will be viable for several years etc. The granules have really not been studied in lyme, and not in depth in syphilis, but they are likely sources of spirochetes, too. Whether they stay latent and dormant really depends on a lot of factors including life stresses, immune system, reinfection, any kind of infection, surgery, anesthesia, stress etc
Posted by oxygenbabe (Member # 5831) on :
The mask is no big deal. It's a soft leaky plastic mask and not unpleasant. Rebreathers are kind of unpleasant. Cannulas tickle and may not be as effective, not sure. In a Vitaeris you can sit up, play with your ipad, or one guy I know rigged up a tv so he could watch movies while lying down with head on pillows.
Posted by mbdq (Member # 26277) on :
To me, people are trying to debate "science and research" regarding hyperbaric that does not exist yet. There are no well-designed, properly controlled studies on the effects of hyperbaric oxygen on borrelia, co-infections etc. We do not know correct depths, time of treatment, mechanism of action, etc.
We can piece together ideas, look at work in other species and organisms, read blogs, listen to patient reports, etc but none will give us a definitive answer on how to cure this thing we call lyme.
This is an extremely complex illness, and especially when undiagnosed and given the opportunity to wreak havoc on multiple body systems with many forms of virulence, it can seem insurmountable.
To some degree, we are all taking risks and experimenting with and without Dr's. support with this illness. Whether its long-term antibiotics, herbs, rife, parasites, chelation, hyperbaric, you name it.
Every person and every person's illness is different. Unfortunately with long-term, chronic illness we must take our health into our own hands and CHOOSE what we feel is best for US.
Hyperbaric may help some or a lot of lyme patients, for others its strictly antibiotics, or rife or photons or ....
In the end, we each need to make our own decisions about our health, take a risk based on what we know to date and how we feel, and hope it helps in the end.
Posted by JCarlhelp (Member # 15957) on :
Amen mbdq
Posted by Phoiph (Member # 41238) on :
Agreed mdbq!
Oxygenbabe...I have also done extensive research, and understand everything you are saying regarding cysts forms, and the tenacity of Borellia in general (by the way, far from a "mild" strain, I had the European, neurological Garinii strain, implicated in ALS, Alzheimers, Schizophrenia, etc.).
This is why I maintain that mHBOT must be done frequently, consistently, and long-term to be effective. I have been doing mHBOT for over 2-1/2 years, (800+ dives) and don't plan on quitting any time soon...that would be insane. I will likely use my chamber at some level indefinitely, as I believe it offers benefits above and beyond treating Lyme Disease.
(For the record, I was without my chamber recently for 5 weeks straight due to a repair issue...and felt fine...no symptoms of relapse whatsoever.)
I believe that eventually, cyst (and other) forms will periodically morph into forms that are vulnerable to mHBOT and a now-healthy immune system, or they will degrade over time.
My concern is that mHBOT is not always used this way (people often think of it as an "adjunct", and to be used infrequently and/or for a limited number of treatments), and I believe this results in treatment failures.
Meanwhile, I am happy to say that relaxing in a chamber for 1 hour per day is a small price to pay to have a full, active, med-free life back...even if it were to be a life-long commitment...
Posted by oxygenbabe (Member # 5831) on :
Phoiph, you're an N of 1. I do know a Lymie who sells them and has done it daily for years. He has lots of health issues and thinks some are Lyme related and some are not.
It's definitely individual. Mostly hbot deep and mild are adjunctive for any condition whether stroke, osteomyelitis, Lyme, cerebral palsy, diabetic wounds, surgical recovery etc. it just is not seen as a curative therapy in the literature. And it makes sense your treatments are ongoing. The guinea pigs relapsed after three months. I agree an hour a day to have a life back is a small commitment.
Virulent strains-- I was thinking of the strains Luft wrote about and of b. mitamatoi
Posted by oxygenbabe (Member # 5831) on :
By the way, phoiph, why don't you go public with your real name and story? If you honestly are in this to pay it forward and not to earn commissions. If you think it's curative used daily long term. I admit to wondering why you are ardent bit anonymous.
Posted by JCarlhelp (Member # 15957) on :
This thread has become very disparaging. This is not a contest to see who is right and who is wrong. I think it has been said numerous times that everybody reacts differently and chooses their treatment. I for one appreciate both Phoiph and Oxyenbabe observations and advice. Both of you have been gracious to answer direct PM's for me as well as direct emails. Maybe we all need to come up for a little oxygen Posted by Phoiph (Member # 41238) on :
quote:Originally posted by oxygenbabe: By the way, phoiph, why don't you go public with your real name and story? If you honestly are in this to pay it forward and not to earn commissions. If you think it's curative used daily long term. I admit to wondering why you are ardent bit anonymous.
Oxygenbabe...
It is inappropriate to attack someone's integrity because they disagree with you.
I am not sure what you mean by my being "anonymous"...aren't we all anonymous on Lymenet...or is your real name "Oxygenbabe"?
And yes, your right...maybe I should go public...write a book or something...I might make more than the imaginary "commissions" you suspect I am taking...
I think it would be best for us to agree to disagree, and refrain from any more contact...
Posted by S13 (Member # 42830) on :
Since i am now orienting on the mHBOT market, what is your opinion on "Summit to Sea" chambers?
They are a bit cheaper than OxyHealth, and ive heard you can get an upgrade to 1.5bar for something like 1K$.
I believe some of their components are actually manufactured in Europe which means less import taxes if you live in a european country.
Posted by TNT (Member # 42349) on :
I know opinions can get pretty strong about issues related to Lyme disease/treatment, but we cannot attack one another... because we need the valuable input from one another.
Everyone's experience is valid, and just because one person found this or that helpful and another didn't, doesn't mean it's not true.
I want to say that I really appreciate Phoiph coming to lymenet to share her amazing recovery and how that happened!
I also appreciate what Oxygenbabe has contributed on the subject, especially the input on some of the practical/technical details concerning mHBOT and her experience with higher pressures.
If we are going to get a good understanding of this treatment modality, we need everyone's respectful collaboration-otherwise we all will suffer!
I think mHBOT holds promise for each one, and hopefully in a few months we will have more feedback concerning this. Until then, please keep your friendly comments coming--personal updates, new info, studies, etc. And continue to lend that personal support.
Posted by S13 (Member # 42830) on :
Im curious TNT, how is your treatment coming along? Still a rough ride?
Posted by Phoiph (Member # 41238) on :
Hi S13...
Posted by Phoiph (Member # 41238) on :
Hi S13...
It is illegal to sell a pressure upgrade kit along with a chamber...FDA only approves soft chambers to 1.3 ATA.
Chamber dealers are also not allowed to sell oxygen concentrators along with chambers...as this puts them into a different medical class which is not FDA approved.
Oxyhealth voids their warranties on any chamber that is upgraded to a higher pressure.
The company you mentioned has had safety issues that you can research before you make a decision...
Posted by S13 (Member # 42830) on :
Ok, perhaps the upgrade kit is non-FDA country only option then?
I will research the safety issues. This is an important consideration for sure!
Posted by TNT (Member # 42349) on :
I am doing daily dives with a concentrator (20 psi, 10 lpm) in a soft chamber (1.3 ATA) for an hour each day. Today will be my 29th dive (consecutive days).
Yes, still a very tough time. But I don't think because of the hbot. I have been on low dose ABX for a few months now, and don't feel like we are getting the right combination.
Everytime I increase my protozoa treatment, or add something (even extremely low dose) for this, I get a major flare. And then I waste away a little more, and feel less and less human. More bone and joint deterioration and pain, more coordination deterioration, more muscle pain, twitching, and muscle wasting. And this is a weekly pattern.
I have lost 20 lbs. and an inch of height with a very gradual wasting and worsening of physical and mental condition since a "reaction" to Flagyl 2 years ago. I now face a weekly cycle flare, and a resulting deterioration each week.
I am not able to properly transcribe what has and is happening to me. My brain gets overloaded every time I try to describe this to someone. Suffice it to say that I am wasting fast for someone who is in their mid thirties.
I have suspected all along that treating my protozoan infections has allowed the bartonella to come out and that my symptoms for years have mainly been bartonella (looking back). My opinion is that it has gotten out of hand, and ripping me to shreds. It could be the lyme as well. But my feeling is mostly bartonella.
I have been taking low dose amoxicillin and bactrim for a few months now. I have also been taking low dose plaquenil for a couple months with that. The week before Thanksgiving, I upped my Plaquenil to 100mg daily, and have deteriorated quickly again. So, I stopped that and have added low dose Cipro to the mix, and honestly, for the first time in 2 years I feel like maybe this is helping.
(I have tried treating bart. with monotherapy zithromax, bactrim, and even a week of Rifampin-each one helped some, but didn't stop the slide. I also have not been able to come down off 20 drops 2x daily of A-Bart for many months).
With methylation issues, MCS, food sensitivies (now), and the lack of real help from any adjunct, and etc, etc, etc, my case is very difficult and extremely complex. But I feel like the main issue has probably been an out of control bartonella infection that we can't get on top of.
I'm sorry for the muddled, long post. Like I said, to try to understand all this and to put it into words is really beyond me at this point. And, I have been pretty much at the end of my rope for a couple years and the doctors have not known what to do, and I have all but given up, and friends and family don't know what's going on, don't understand me, and don't know how to help. That said, family and friends have been willing to carry me financially. But they honestly don't know how to relate--they think I'm some psychiatric case to a certain extent.
The mHBOT has been somewhat of a last ditch effort, but I honestly don't feel it has helped yet. But (and I hate to say this because of a let down, and for getting other's hopes up) I think that this Cipro may be helping. And I feel strongly enough about the potential of mHBOT (from what I have researched myself) that this will be a very synergistic adjunct to my healing and restoration if things start to turn around. If things do turn around at this point, I will have a hard rehabilitation and may not ever be able to get back to a normal life.
So, to answer your question more directly. I do not feel hyperbarics are helping at this point. But I will continue until I cannot get in and out any more. Time will tell....
Posted by S13 (Member # 42830) on :
I can relate with you TNT. I think my case is not as far advanced as yours, but i see the same pattern. For me too it was bartonella that has been causing me most problems, but it wasnt until i started treating babesia that bartonella really flared up. Before babs treatment i was still able to work and drive in my car a bit. Now im at home and cannot even get my own groceries.
Bartonella sucks! Or is it BLO? No one knows. Good thing you are still tolerating cipro. I got tendon issues after 1 dose. Now im on rifampin for 4 weeks and it is very slow going. I hope the hbot can give the additional push i need to get the infections under control.
Posted by TNT (Member # 42349) on :
I want to add that if mHBOT does help, I will attribute trying this treatment mainly to Phoiph coming back to lymenet and making this modality more visible to others because of her own experience.
Posted by TNT (Member # 42349) on :
Hi S13,
I know some people can't handle the fluoroquinolones because of the tendon toxicity. I was previously on Levaquin (a few years ago) and didn't have any trouble then.
I probably would have some issues now if I would start out with a full dose like I did with the Levaquin, but I start everything at really minute doses now. I took 125mg of Cipro once a day for the first two days to begin with.
It's extremely weird, but my tendons really feel better since starting the Cipro. For months, the nodules were getting worse and worse (and WORSE!) until they became strings of little painful nodules tied together. I could (and still can) feel the nodules on the tendons move across the bones when I move my feet. But the pain is less!
Yea, Bartonella is a horror! I believe like Dr. S that it is a world epidemic. I have analyzed this to a fault, but I see a strong correlation of Parkinson's to bartonella infection.
And why else is road rage and psychiatric cases on an alarming increase? I don't say these things to very many people because they think I'm off my rocker saying things like this.
Well, I'm getting a little off the subject now....but hopefully mHBOT will prove to help with my bartonella and my healing.
Posted by oxygenbabe (Member # 5831) on :
My question was valid. If someone claims to be cured (actually in remission with ongoing sessions, and repeatedly questions input that borrelia is not killed in vivo even at 2.4 ata in a chronic Lyme patient, claims to receive no commissions and set aside half in a pay it forward fund (I received a commission two years ago for recommending the mhbot to a doctor who then bought it btw so I know commissions are routine) I'd like to know their real name. Generally even then I take cure stories with a grain of proverbial salt even if true because of how different we are.
I want to emphasize its an excellent underutilized therapy generally and I'm glad if it helps anybody here.
Posted by CD57 (Member # 11749) on :
TNT, possibly your bartonella is a problem because you have done mostly monotherapy for it. You really need to do double intracellulars for bart, Buhner says it, and all the LLMDs. I think Dr H in NY discovered this several yrs ago. So perhaps you should consider one of the Dr H combos for it: Cipro/mino/Plaquenil Cipro/doxy/Plaqenil Bactrim/Rifampin/Zithromax
there are several listed in his new book. Please check it out. It could be very beneficial.
Posted by TNT (Member # 42349) on :
Thanks, CD57, I have done triple ABX treatment for short periods, but had to stop because of all the gut issues.
But I now wish I had stayed the course somewhat longer the times I was treating more aggressively.
And... if I had not used Flagyl, I believe I would definitely be in better shape to hit things more aggressively.
According to some labs, it does appear that my fungal load is minimized at this point, so that is in my favor hopefully.
A local friend has a copy of his book, and I should be able to read through it soon. I will definitely check that out.
Posted by CD57 (Member # 11749) on :
Perhaps you can do low doses of triple combos?
Posted by CD57 (Member # 11749) on :
Perhaps you can do low doses of triple combos? I wonder what it was about the Flagyl that set things off, that is interesting.
And you notice a flare every time to try to do antiparasitics, which is also interesting. Maybe it's not bartonella?
Posted by S13 (Member # 42830) on :
So would a combo of Mino and Rifampin be considered double intracellular? Or should i add bactrim/septra ds for example?
Posted by CD57 (Member # 11749) on :
mino and Rifampin is a double intracellular. Some docs add a third, or Plaquenil to alkalinize the intracellular compartment.
Posted by JCarlhelp (Member # 15957) on :
Ive decided also to take the "dive". It will take a couple of weeks to get everything shipped here, but after that i should be good to go! Fingers crossed Posted by CD57 (Member # 11749) on :
allright! keep us posted.
Posted by BBinme (Member # 34131) on :
Phioph, I cannot seem to send you a pm until you respond to my last pm...not sure why it works that way and I cannot figure out another way. Can you pm me please? Thanksd
Posted by Phoiph (Member # 41238) on :
Okay...sent!
Posted by S13 (Member # 42830) on :
So, i already got the air concentrator, an intensity 10L model. Was just playing around with it since i have no mhbot chamber yet.
Wat an awful sound it makes! I thought it would be quiet since it is intended for home use, but no way... My ears are oversensitive because of neurological bart, so looking for ways to make it less noisy. Any ideas?
Posted by Phoiph (Member # 41238) on :
S13...
The AirSep makes a "test alarm" sound for about 5 seconds when you start it up, then should just make a repetitive "whooshing" sound, with a low motor hum in the background.
Remember that you will not hear this as clearly when you are inside the chamber, and you can always wear headphones (after you are up to full pressure and have cleared your ears).
You can also move the concentrator farther from the chamber and use a longer hose, but the longer the hose, the harder the unit has to work, and you may lose a little flow/purity.
I had huge sound sensitivity issues as well, and was able to tolerate this (and the sound of the compressor) once I got inside the chamber. Just don't turn it on until you're ready to use it...
Also, a precaution...don't ever turn your concentrator off before the chamber is depressurized completely; the backflow from the chamber can damage it...
I wrote up some basic step-by step instructions/precautions on how to take a "dive", and care for your equipment that I can send you if you like...
Posted by S13 (Member # 42830) on :
quote:Originally posted by Phoiph: Also, a precaution...don't ever turn your concentrator off before the chamber is depressurized completely; the backflow from the chamber can damage it...
Ah yes that is good advice indeed! Guess ill see how it goes when the chamber arrives, perhaps the sound isnt as annoying then.
And yes please send me the instructions! That would come in handy for sure.
Posted by Phoiph (Member # 41238) on :
Okay...sent!
Posted by S13 (Member # 42830) on :
Thank you very much Phoiph!
Posted by Toni L (Member # 42785) on :
Phoiph, Will you please send me the instructions too? My daughter starts mHbot next week and FIR Sauna to help detox. Thank you.
Posted by Phoiph (Member # 41238) on :
Toni...
I just PM'd you...
Posted by kgg (Member # 5867) on :
Even though I am not using it at present, I would appreciate a copy of your instructions. I have someone who may be start using out chamber.
Thanks in advance
Posted by kgg (Member # 5867) on :
Even though I am not using it at present, I would appreciate a copy of your instructions. I have someone who may be start using our chamber.
Thanks in advance
Posted by kgg (Member # 5867) on :
Even though I am not using it at present, I would appreciate a copy of your instructions. I have someone who may start using our chamber.
Thanks in advance
Posted by Phoiph (Member # 41238) on :
kgg...
I just PM'd you...
Posted by S13 (Member # 42830) on :
My chamber arrived today! I will start tonight, slowly for 30mins. Im very excited!
Posted by S13 (Member # 42830) on :
I found some research regarding mhbot and brain oxygen delivery:
Ah yes, good find too Phoiph!
Posted by soccermama (Member # 35101) on :
Phoiph, great site. I will enjoy reading it. I saw My LLMD yesterday. She is not convinced in its effectiveness. She thinks hard shell and benefits are temporary.
I said so are the benefits of antibiotics for alot of people. When I can afford it, I am getting a chamber. I don't care if I have to do it every day. If it gets rid of my symptoms, it is a small price to pay.
Maybe it requires long term maintenance but if you can have two to three weeks before symptoms start back, that is enough time for a vaction etc.
Last year I maxed out both my in-network and out of network expenses to the tune of $10,000 that is what my insurance covered. Most of that money was spent on symptom relief and a hospital stay after an ER visit.
I had an additional, $1600 out of pocket for IV rocephin that did nothing for me which my insurance did not cover.
I haven't added up my other nonreimbursable expenses for supplements, medicines etc. that I paid. I have a pile of papers in a folder.
I am sick of spending money and not seeing any benefit.
My PCP thinks my infection is now gone and that most of what is left is damage to my system.
I have a new mhbot clinic 30 minutes from my house. They charge $100 dollars a treatment.
After I save some money, I am going to set up some treatments. If I experience symptom relief, then I have my answer. Not too much else is working.
All who are doing mHBOT, please keep us posted on your progress. Even in stops and starts, if progress is made, it is helpful to know.
Posted by Phoiph (Member # 41238) on :
Soccermomma...
In my opinion benefits are often only temporary as your doctor said...but this is often because people quit treating too soon with mHBOT, or don't treat consistently enough.
I may sound like a broken record, but this is not a sprint, it is a marathon. I treated daily for one whole year without taking a day off...and then it was a short vacation, and I resumed immediately when I returned.
I thought I was well at that point (I was actually traveling again, etc., after not having left the house for 5 years), but now that I have been using my chamber for 2-1/2 years, I realize how much further I have come since then. Healing takes time.
If I had quit treatments after the usual 40-day protocol (which I almost did, as I didn't notice benefit yet at that point), I am 100% positive I would have not become well.
So, although I'm very happy when I hear that people are considering mHBOT, my concern is that they will buy 40-60 treatments a clinic, and spend thousands, and regardless of whether or not they receive benefit in this short time, it is most likely not going to be enough time for the treatment to "stick"...and they are left with no ongoing treatment.
This is why I encourage people to consider a home chamber...which is an investment that can always be re-sold...
Posted by soccermama (Member # 35101) on :
I share your opinion. My plan is to get a chamber for home. What I was trying to say is that last year alone I spent the money that could have been used on a chamber and did not see any improvement.
I am not going to make that mistake this year. However, I will try some sessions at this clinic so that I will now what to do etc.
mHBOT works for alot of things. I think it will truly help with my remaining symptoms at the very least. If it provides a "cure, then I am blessed all the more.
Posted by Phoiph (Member # 41238) on :
Soccermama...
Great. I know I keep belaboring that point...but I just want to be clear and don't want to mislead anyone!
I agree about the money...I try not to think about how much I spent over 8 years trying to get well...I could have bought a fleet of chambers...:)
Posted by Ruwondering2 (Member # 43108) on :
Hi all, I've had my own chamber for a few months now. It's a used chamber and came with a 10L oxygen generator is that adequate. Thanks
Posted by JCarlhelp (Member # 15957) on :
If you mean 10 liters per minute, it should be. What is the maker? Has it helped?
Posted by S13 (Member # 42830) on :
Make sure the oxygen concentrator provides enough pressure to compensate for the mhbot chamber. Otherwise you will have no flow.
If your concentrator has an airflow indicator you can verify this easily.
Posted by Phoiph (Member # 41238) on :
Yes, as S13 said...
There are 2 main things to consider when buying an oxygen concentrator to be used with a mHBOT chamber...
1. The PSI (pounds per square inch) must be high enough to compensate for the backpressure of the chamber. If it is too low, it will not only produce less 02 flow, but will damage the concentrator. The oxygen concentrator that I recommend is 20 PSI (well above the 4.2 PSI backpressure of the chamber).
2. The LPM (liters per minute) must be adequate. This is important, because when breathing 02 through a mask, the flow must be high enough to push the exhaled carbon dioxide out of the mask vents. The oxygen concentrator I recommend is 10 LPM.
A respiratory therapist I have spoken to recommends using a mask that covers both your nose and mouth, as both the nasal cannula and nose mask deliver less oxygen...
Posted by oxygenbabe (Member # 5831) on :
Please remember, Phoiph's experience is rather unique. Many have done far more than 40 treatments, and not gotten seemingly completely well. Just because hbot both hardchamber and mild is a very helpful adjunct treatment, please don't take an N of 1 and Phoiph's "opinion" which can be stated in such a way it seems to be fact, that buying a chamber and using it daily will get you well over time. It is helpful, but it is extremely rare that on its own, it brings people to full functionality.
Posted by Phoiph (Member # 41238) on :
I appreciate Oxygenbabe's point.
Again, I believe my success (and what makes me a "N of 1") was/is due to the length of time I have done mHBOT daily consistently (along with the diet and increasing activity).
As I have said, I have not found any mHBOT users yet who have also used mHBOT in this same way, as many have given up after 40 or so treatments (as I almost did), or have used it longer but only inconsistently over time.
All I can do is post my observation and "N of 1" experience, which I believe I am obligated to do.
In my opinion, what would be really helpful information for all, would be for someone who already has a chamber and is very knowledgeable (i.e., Oxygenbabe) to commit to a consistent, 1 hour daily protocol for at least 6 months, and give us a progress report at that time...
Posted by oxygenbabe (Member # 5831) on :
You're incorrect. I personally know someone who has done it daily for about 10 years. Is helpful--but hasn't stopped all kinds of health problems, surgeries, etc, due to lyme sequalae as well as other problems.
"I believe" is belief. I think you are very lucky--and more power to you--and most people are not going to have your response just doing mild hbot. It's a great adjunctive therapy, as I always say.
Posted by oxygenbabe (Member # 5831) on :
As to me, Phoiph, I got sicker and could not function when I tried to do it even 3-4 times a week. I cannot do a lot. I have a feeling it starts stimulating yeast, but I can't say that for sure. But it felt like yeast symptoms, including low grade fevers, itchy, foggy, etc. Very yeasty. No, not like a lyme herx which I know very well from doing deep dive. Deep dive was highly effective but it's prohibitively expensive and I do not think it's healthy to do longterm even though I know a few who have.
Whatever the reason, I was able to tolerate about twice a week mhbot without losing function--and that twice a week was very helpful. I had to find the happy medium. Then eventually I went to twice a month. I would never do it every day, I'd end up losing all my gains.
Posted by oxygenbabe (Member # 5831) on :
Oh, and I should add, unlike you--I had an immediate (same day) response to both deep dive and mild hbot. Different--deep dive killed off a lot, caused herxes, and gave much more energy, and started healing some other problems (but after stopping slowly lost most of those gains tho I always credit deep dive for saving my life initially).
Mild...when I finally got to do it after 18 months of no doing any hbot, one hour, and my buzzing toxicity was gone. I felt much better. So I always had an immediate response. I'm very sensitive, though.
As I said, it's a nice and powerful adjunctive therapy. And it's good that chambers are fairly reaosnable now--with leasing programs, and craigslist--BUT it's very YMMV (your mileage may vary). So dont hold out too much hope for that single-approach magic cure, folks. Mostly, chronic tbd is not that way.
Posted by Phoiph (Member # 41238) on :
Oxygenbabe...
Thanks for sharing your information; it is really valuable. I believe the more we post details about our experience with mHBOT, the more realistic and accurate picture we can get about how it works across personal conditions, protocols, etc.
So, to recap:
-You felt better (less toxic "buzzy" feeling) with your first mHBOT dive after an 18 month break from HBOT, and felt benefit by doing dives twice a week, but couldn't tolerate more frequent sessions, or you would feel more ill.
-In my case, I felt no positive effect for over 50 daily mHBOT dives, but then with continual daily dives, experienced a gradual 2 step forward, one step back pattern that resulted in return of wellness over time.
-Variations in our experience/background include the fact that you had previously done HBOT but stopped 18 months before starting mHBOT, and I had previously done antibiotics, but stopped 5 years before starting mHBOT. Another variable, of course, is the different protocol we used (daily vs.twice/week).
-You also mention knowing someone who has done daily dives for 10 years, for whom it has been "helpful", but they still experience health issues.
-I am currently in contact with several people who have recently started regular mHBOT, and, although their early responses are up and down, they are reporting some very positive changes.
The truth is, nobody knows how many people will reach the level of wellness that I have with mHBOT, and I appreciate that you don't want people to believe that everyone will have the same results, or that this is a "magic cure" for everyone. I have never claimed that, or wanted to raise false hopes, either.
That said, I also don't believe I was just "very lucky", nor do I believe I am completely unique. I believe there is potential here for other people to get well also, and that potential needs to be explored.
We simply don't have enough data to draw conclusions, and unfortunately, with oxygen being un-patentable, we can't hold our collective breath waiting for more research from "Big Pharma". So, like everything else with Lyme, we're left to figure it out ourselves.
I trust that with more people committing to regular mHBOT treatments and reporting their results, a clearer picture will begin to emerge over time...
Posted by JCarlhelp (Member # 15957) on :
I would add that another strategy of HBOT first then MBOT immediately after has not been fully vented, at least know one has mentioned that. I know that Phoiph advocates slow and steady for detox, building immune system etc. My wife is in the process of HBOT for 20-40 treatments and then will immediately switch to MBOT. She is seeing both improvements (joint pain especially) and rough days of what is assumed to be a herxheimer. I will continue to post. It has been my reading experience that HBOT was a very hot topic after the Fife study and lots of people started doing it. I have talked to at least 4 chamber operators in the last few days and some have claimed great results and even said lasting remission. I am a little suspicious of this because HBOT seemed to wane a little attention in the the last 10 years but seems to be popping back up again.
Posted by JCarlhelp (Member # 15957) on :
Here is another interesting piece of information. Byron White of Byron White formulas that are well recognized on this site wrote an article many years ago on MBOT. I contacted his office with the following responses:
1. Am not at liberty to speak for Byron's personal life and what he used but know he advocates for mild hyperbaric.
2. Yes our formulas can be utilized at the same time as using hyperbaric. In fact some people take the formulas 30 min prior to using their MBOT.
Seems that some people use these two in combination. Lots of unanswered questions that only time and further experiences will tell.
I am not a doctor so none of my posts should be taken as any kind of medical advice.
Posted by oxygenbabe (Member # 5831) on :
Phoiph, I am really glad you're better but I take issue with your stating beliefs in a persuasive way, when they really are not based on good evidence. "That said, I also don't believe I was just "very lucky", nor do I believe I am completely unique. I believe there is potential here for other people to get well also, and that potential needs to be explored."
That's why I keep pushing back, while keeping in mind I think it's an underutilized and valuable therapy so in that way, it's good you're highlighting it.
JCarl, yes, doing deep dive followed by mhbot, that would have been ideal had both been available to me way back then.
Oh, I forgot to add that I was having debilitating migraines, and mhbot helped. I have had to do a lot of things, though, to handle the lyme induced migraines. I've had to give up beans, drink lots of fermented beverages, get lots of fresh air, avoid too much sugar, and the mhbot--and all those things together have helped the crushing SLYME migraines.
Posted by Phoiph (Member # 41238) on :
Oxygenbabe...
This is a "forum".
Beliefs, theories, opinions, observations, and experiences are encouraged here, even those that may be contrary.
My "beliefs" are based on my experience/observations, just like yours are based on your experience/observations. They just happen to be different. This doesn't make either of our positions less valid or less worthy of expression.
The truth is, neither of our positions are "based on good evidence"...because there is really not enough data at this point to draw conclusions...
Posted by CD57 (Member # 11749) on :
Phoiph is right on there being no data. I have spent hours scouring and looking for data; there is none. WE are the data. I for one am so glad that she has posted her experiences and offered to spent much of her own time offering information offline. Thank you Phoiph!
Posted by oxygenbabe (Member # 5831) on :
But Phoiph, what are your beliefs based on?
There are people such as James Johnson a long time ago who did 150 deep dives in a row, and went into remission for quite a while.
Wild Condor on these forums, only believes in monochamber deep dive, and did hundreds of them along with many antibiotis, to recover.
It's not like you're the only one. WHen I did deep dive in Great Barrington for 2 months, there was another gal who did it for probably five or six months, without antibiotics.
But those were all deep dive.
I know of one other person when I first posted about a chamber, noodly doo, bought an mhbot, who got a very good response. I don't think he was nearly as sick as you. This was about ten years ago now. If he stopped for a few weeks, he'd stat to relapse.
Your belief isn't reflected in the experiences out there, where in your case, there is no response for months, and then steady improvement JUST doing a home chamber for these complex tickborne diseases.
YMMV, folks, but I doubt you'll get any reports back as extraordinary as yours--and unusual in that there was no response for so long, and then a response. The issue is, people are spending many thousands of dollars based on hope they'll have a similar response to yours. That's why I'm leavening it with all I've seen heard and experienced myself. HBOT and mHBOT are not new treatments. OTOH, will people be helped? I think so.
Posted by soccermama (Member # 35101) on :
I don't think people are blind or being manipulated. Of course, we are all looking for something that will take us across the finish line.
I have spent thousands and thousands of dollars and owe many, many thousands of dollars still on various treatments. I am now having to think outside the box.
No one knows for sure, what is working because so little research is being done. However, one FACT is known based on the placebo and nocebo effect and that is a person's belief in a treatment is crucial to its success.
Therefore, when someone continually posts a dissenting opinion it can undermine a treatment that may be beneficial.
I think we have the point that mhbot may not cure and that we should not base our opinion on one testimonial. Enough said already.
Posted by Chipster (Member # 43143) on :
I second soccermama in supporting Phoipfs posts.
Hyperbaric and its son MBOT is a mainstream, widely used modality with many conditions that are reimbursable.
As someone new to the site, it is helpful for me personally to read what has really worked for some patients, especially if the treatments are mainstream and relatively safe.
Chipster
Posted by oxygenbabe (Member # 5831) on :
Cautionary opinions from me who has long experience with both forms and knows numerous people who used hbot and mhbot short and longterm is useful when $10,000 or more is at stake.
Posted by Phoiph (Member # 41238) on :
The expense is certainly an issue for most people, so I often help them find alternative ways of accessing a chamber...including:
-Finding quality used equipment that is usually 1/2 to 2/3 of the cost of new equipment
-Passing on a portion of the discount (on new and used equipment) granted to me by the manufacturer (no, I am not a sales rep, nor do I take a cut...the other portion goes into a fund held by the manufacturer to purchase chambers to be used by the community on a donation basis)
-Finding cooperative partners in their vicinity to share costs/use
-Passing on information about creative financing possibilities, through benefactors, the manufacturer, and lenders that provide loans for medical equipment
Also, it must be kept in mind that a quality chamber is an investment that can be resold...
Posted by oxygenbabe (Member # 5831) on :
Why has the manufacturer granted you, a patient, a discount on purchase of all chambers? You mean that you buy the chamber and sell it to a patient, apparently at the same discount? Who can even verify the numbers, then? Even stranger yet, you've obviously talked to them at length, and created this unusual agreement--but you're doing this all anonymously on lymenet?
In fact, I think you would have to have set yourself up as a distributor--though I'm not sure what the legalities are? I can see why they'd benefit (the discount doesn't mean they aren't profiting. If you're selling chambers for them, they're happy).
Can you tell us where the fund is? Who at oxyhealth can verify this, and how do they decide to whom to donate chambers? What is the discount on a new solaris, a new respiro, and a new vitaeris? How large is the fund now, and are they donating it for lyme patients?
Posted by oxygenbabe (Member # 5831) on :
Cooperative partners rarely works out. Someone has to keep the chamber at their place--while others visit--I've not seen that work out very well.
Even used, chambers are expensive.
Selling them is not simple--though it can be done.
I'm trying to sell my oxygen concentrator now and though it has a 3 year warranty, and is very well priced, I've had absolutely no interest in it at all so far, nationwide.
Posted by Phoiph (Member # 41238) on :
The manufacturer has granted me a discount because I have developed a rapport with one of the reps that I coordinate with, and I asked for the discount (to be passed on to the buyer) based on how many people I had referred to them. The rep knows that I became well with one of their chambers, and of my mission to spread the word on mHBOT. It is a win-win for both sides.
I do not buy chambers from them and re-sell to buyers. The transaction is done through the rep, and I handle/receive no money whatsoever. The accounting/fund is also held by the manufacturer through the rep.
The donation of the first chamber will likely be to a clinic that can provide space and supervision; these details have not been completely worked out yet.
I have set up many cooperative partner situations that are working out surprisingly well. The most challenging part is proximity...but when you are working with a Lyme support group, for example, there are usually enough people in need that live close enough to each other.
I have helped a number of people find chambers to buy/sell (no fee); finding a quality used chamber can be more of a challenge than selling one, in my experience.
I know of several people that may be interested in your concentrator, depending on the model, price, etc. Why don't you PM me, with the details?
Also, since I don't post people's personal information, if you PM me, I can give you the rep's contact information that I am coordinating with if you would like to verify my story...
Posted by oxygenbabe (Member # 5831) on :
I am going to leave off posting about oxygen on lymenet for a while.
My final comment is: an anonymous poster, an anonymous rep, a fund nobody on the outside is monitoring, I suggest you get your chamber directly from oxyhealth, or via craigslist. But I don't really care what Phoiph and her rep are doing, or what the money situation is. I can just say, that nobody else has come on here yet to say they are getting *well* too just by mhbot. Some have some improvements. As to be expected, it's often a useful intervention along with all the other stuff people can and must do.
My concentrator is an Integra Sequal analog (little ball goes up and down), reconditioned with a 3 year warranty. Sequal has been bought out by AirSep, but this used to be the preferred one for OxyHealth. I don't want to do this secretly--you can have anybody interested post here or PM me. I only want my costs back, which was $550 to recondition, plus $75 ground shipping anywhere. Thanks. (Why do I have the sneaking suspicion Phoiph won't be forwarding people to me to PM directly? Just a hunch.)
[ 01-29-2014, 09:24 AM: Message edited by: oxygenbabe ]
Posted by CD57 (Member # 11749) on :
Phoiph has recently worked with me to find an affordable chamber, it was very creative, I am greatly indebted to her.
Posted by oxygenbabe (Member # 5831) on :
Who knows, CD57, what the real financial arrangements are. We never will. Let's see if *anybody* else who uses Phoiph's protocol reports remission.
Posted by oxygenbabe (Member # 5831) on :
Oh, and those who don't, should post. Nobody should be shy about mixed or negative results. We should know who has bought an mhbot since Phoiph has posted, what their protocol is, and their results. There should be a thread where people can assess. No?
Posted by Phoiph (Member # 41238) on :
We haven't heard from TNT in a while. I wonder how the mHBOT treatments are going. Are you out there TNT?
Posted by lemongirl (Member # 42208) on :
I LOVE my mHBOT!
Posted by S13 (Member # 42830) on :
Is it normal to have an irregular heartbeat during and after decompression? Ive never experienced a symptom like this before. I do have a pounding heart which comes and goes for the last 6 months now.
But just today i noticed the irregularity on decompression. My heart seems to stall for a second or so, and it feels a bit funny inside my chest (hard to explain). After this it continues normally.
It kept repeating a few times, and now 15mins after decompression i dont notice it any more. Any thoughts?
Note; in the last few days ive started to focus more on a possible systemic candida. Perhaps that could be related? Oil of Oregano, gluten free diet, lowered carb intake.
Posted by S13 (Member # 42830) on :
Strange, just now it happened again a few times. Seems to be triggered when im moving. While im sitting still my heart is ok. So perhaps it is not related to the mhbot decompression?
So could it be the candida then? Oh yeah, also started taking SF722 3 days a go.
Another sidenote; in the last days ive also experienced more joint crackling/pain and dizziness.
Posted by S13 (Member # 42830) on :
I did take a sauna earlier today, about 2 hours before the mHBOT session. Could that together with the altered diet result in shortage of electrolytes?
Posted by Phoiph (Member # 41238) on :
Hi S13...
I'm not sure if it is the same in the Netherlands where you live, but here a doctors prescription is required to buy a new or used chamber/oxygen concentrator from a vendor...so I'm assuming you were medically cleared for mHBOT...
That said, I doubt it is related to hyperbaric itself. I think it is more likely related to the sauna...as it can definitely deplete minerals and electrolytes.
I also don't recommend doing both the chamber and sauna therapies concurrently, especially when just starting treatment. It is a lot for the body to handle, even for a person who is well.
At the very least, consider lengthening the intervals between the 2 treatments as much as possible (without cutting back on your daily mHBOT ...
[ 01-31-2014, 01:08 AM: Message edited by: Phoiph ]
Posted by S13 (Member # 42830) on :
Hi phoiph,
no, we dont need a doctors prescription for mhbot here. There is no regulation for it because it is not used that much. But then again, i should be medically fine, since all doctors in the last year couldnt find anything wrong with me. So medically speaking im "healty".
Yeah i also doubt it was the mHBOT. I have read that candida can mess with your heart, which may be why i have had a pounding heart for almost 6 months now.
What is your opinion on mHBOT and candida? Some say the oxygen can cause candida to thrive?
Posted by oxygenbabe (Member # 5831) on :
S13 I felt the deep dive was fairly suppressive to candida which rebounded badly when I stopped; while the mhbot promoted the candida if I did it daily. Just fyi.
Also--you really should ask a doctor to check the heart and do a holter monitor. Asking someone online in another country if they think the mhbot is responsible for heart issues, isn't the best idea--not for you or for the person answering. They have no idea.
Best of luck.
Posted by Phoiph (Member # 41238) on :
S13...
I agree that if you haven't been checked out or cleared for mHBOT, you should be...
My experience with candida was like all the other opportunistic infections I harbored; it faded over time as my immune system strengthened, and eventually became a non issue...
Posted by S13 (Member # 42830) on :
So what kind of checks would they need to do? What is the criteria your doc uses to grant mhbot prescriptions?
Im in a difficult part of my treatment i guess. Treating for bartonella is clearly showing improvement in neurological functions, so i wish very much to continue with the rifampin. But that also means yeast is allowed to endure...
Posted by JCarlhelp (Member # 15957) on :
For regular HBOT the doctor required a chest X-ray, don't know if necessary for MBOT or not.
Posted by oxygenbabe (Member # 5831) on :
There are absolute contraindications and relative contraindications. The chest x-ray is to be sure you don't have pneumothorax I'm pretty sure--you can't pressurize the lungs then. You shouldn't do either one when you have a bad cold or sinus infection as you won't be able to equalize the ears. If you already have cataracts they can ripen faster with hbot, so that would be a relative contraindication (patient and doctor would decide). It would be wise to be seeing a doc knowledgeable in hbot to at least consult with over this, although mhbot is a relatively safe "treatment".
Posted by oxygenbabe (Member # 5831) on :
Oh, and you shouldn't do it right after a tooth filling, you're supposed to wait at least some days, I can't remember how many (that would be deep dive. Not sure if it matters with mhbot). The filling has to settle properly I think.
Posted by S13 (Member # 42830) on :
Ok i should be good to go then. No probs with lungs, and my eyes are examined each 6 months.
Today i didnt notice the heart irregularity, but i also didnt took the sauna. So it could be electrolyte shortage due to the sauna / candida diet and an already stressed heart from the infections.
Posted by BBinme (Member # 34131) on :
S13 and lemongirl, I wonder if you could tell us details about your journey so far with mhbot? How long you've been doing it? How you have felt while doing it? Hers reactions. And how you are now? Has it helped? Thank you for elaborating
Posted by S13 (Member # 42830) on :
Im only up to 25 dives, so i have just started. While i generally feel im moving in the right direction, ive also started to attack candida with some natural supplements a little over 10 days back. That is giving me a worsening of symptoms now.
Posted by Catgirl (Member # 31149) on :
I used to have horrible vertigo--would HBOT bring that back?
Do people do HBOT while still on meds, or do you have to be off of meds first?
Posted by JCarlhelp (Member # 15957) on :
I believe that HBOT is more effective when done with antibiotics if you have decided to be on antibiotics. Just an opinion.
Posted by BBinme (Member # 34131) on :
S13, are you also on antibiotics or any other treatment for Lyme/confections??
Posted by S13 (Member # 42830) on :
Yeah im still on antibiotics for Bartonella. Mino and Rifampin. I know that doesnt help the candida at all, but im making progress. Some bartonella symptoms are close to resolving, and my Giemsa bloodstain show less and less bacteria adhering to my RBC's. So im going to continue with bart treatment for at least 3 more months, and then see if i can quit abx all together.
Posted by Phoiph (Member # 41238) on :
I had to quit all antibiotics (pulled my pic line) and formal treatment (except homeopathy) 5 years prior to starting mHBOT due to increasing toxicity, chemical/environmental sensitivity, gut issues, etc. (in essence, I became too ill to continue treatments).
In my case, even though I didn't have a choice, I believe doing mHBOT without antibiotics ended up working to my advantage, as I wasn't continually taking in more substances that required detox.
This is my experience only...others may differ...
[ 10-05-2015, 05:28 PM: Message edited by: Phoiph ]
Posted by BBinme (Member # 34131) on :
S13, how long have you been on mino and rifampin? I believe I also have bartonella, I'm taking septra and zithro currently, I was unable to tolerate rifampin. Also what supplements are you taking for yeast? Think I have issues with it also..
Posted by S13 (Member # 42830) on :
Im doing rifampin for 3 months now. The Septra and zithro never worked that great for my Bart (but at that time i also had babs). Rifampin and Levo were the only ones to touch it.
My yeast protocol now consists of: - Diet (Phoiph has also been very helpful with this and provided some good tips and recipes!) - Lots of coconut oil - SF722, 15 caps/day divided in 3 doses - Lufenuron - Phellostatin (berberine containing supp) - Tinospora cordifolia (berberine containing supp) - Probiotics, VSL3 and Theralac - Kefir - Oregano oil - Now Candida Support
In a few days i will start fluconazole. I will then stop with the berberine herbs, and possibly start with a pure form of berberine. (perhaps the tinospora will be left in, because it has liver regenerative properties, which will be very helpful with the fluconazole and rifampin) The lufenuron was a bit of a gamble, but did point me in the right direction of candida. I dont think it can cure a systemic candida infection however.
I think when i started doing mHBOT i already had small increase in candida symptoms. Perhaps it is able to deteriorate the candida biofilm? I dont think mHBOT kills the candida though.
[ 02-04-2014, 06:41 AM: Message edited by: S13 ]
Posted by oxygenbabe (Member # 5831) on :
I doubt mhbot "deteriorates" biofilms... Can you tell me how you did with the lufeneron? I've heard very few reports from actual users. Thanks a lot.
Posted by S13 (Member # 42830) on :
Well, at least I didnt die, so thats nice
I did get more fatigue and a bit of an emotional/depression kind of herx. After the first dose my leg muscles which normally feel "toxic" fatigued, all of a sudden felt calm and relaxed. I hadnt had that feeling for a long time. But after the 2nd dose (and especially now that im throwing everything i can at it) the toxic/fatigued feeling became worse than ever before.
I find vitamin C to help a lot with the emotional/depression part.
Posted by oxygenbabe (Member # 5831) on :
Hmmm. I had read it stays in your system for weeks, though. Well at least you didn't have a weeks long horrible reaction. I'd try it but am afraid of the length of time it sticks around.
Posted by S13 (Member # 42830) on :
Yes it is supposed to stay in your system for a few weeks. But even Sarah Vaughter states: "More serious semi-systemic Candidiases may need multiple treatments and are at least temporarily improved"
Temporary improvement is not a cure. But in my opinion it is always good to attack from different angles at the same time.
Posted by Phoiph (Member # 41238) on :
S13...you asked, "...What is your opinion on mHBOT and candida? Some say the oxygen can cause candida to thrive?..."
Here's a quote from "The Textbook of Hyperbaric Medicine"; K.K.Jain regarding Candida Albicans and HBO:
"...Effect of HBO treatment and antifungal agents on Candida albicans has been examined in vitro. There was no response to increased atmospheric pressure alone, but addition of 100% oxygen under pressure led to growth inhibition of p02 of 900mmHG and killing of organisms at a pO2 value of 1800 mmHg. Clinical use of HBO for this infection and a study of the interaction of HBO with antifungal agents has been suggested by but not tested clinically..."
So...even though the oxygen saturation levels shown to inhibit or kill candida in this study are higher than those reached by use of ordinary mHBOT or HBOT therapy in vivo, the study at least suggests that candida is not promoted by these therapies either...
The text also mentions that HBO improves the immune mechanism of the body, including phagocytosis (which is necessary for the body to manage candida and other infections)...
It also assists in detoxing the byproducts...
Posted by S13 (Member # 42830) on :
So how many ATA does a pO2 of 900mmHG correspond to?
Posted by S13 (Member # 42830) on :
Ah wait I found this:
So 1.3ATA = 840mmHg paO2
So to get to 1800mmHg killing levels, you need at least 2.5ATA. For 900mmHg inhibition levels you need 1.375ATA. That is actually not that far from 1.3ATA mHBOT. I would assume that even if it is not inhibiting candida at 1.3ATA, it would at least slow down the growth.
Posted by Phoiph (Member # 41238) on :
Actually, there are a couple of other factors that affect amount of 02 that ultimately dissolves into the tissues...
To use a quote from the Austin study:
"...if the patient were placed in a hyperbaric chamber and the pressure increased to 2.36 atmospheres, absolute (ata), the total barometric pressure would be 1794 mm Hg. If the patient were then to breathe pure oxygen the inspired partial pressure of oxygen would be 1794 mm Hg. Inspired oxygen is diluted by carbon dioxide and water vapor in the alveoli, so that the arterial blood would be exposed to an oxygen partial pressure of approximately 1700-mm Hg, and the tissue oxygen would be between 200 and 300 mm Hg...
Also, with mHBOT using a 10LPM 20PSI 02 concentrator, you will be breathing approximately +60% oxygen, rather than 100% as in the above reference...
That said, at least it wouldn't be likely increase growth, and the increased efficiency of the immune system would have a positive effect...
As I mentioned, in my case, candida became a non-issue as I became well with mHBOT...
Posted by soccermama (Member # 35101) on :
I have not done any other research but the Lyme MD posted this on July 22, 2013. He was talking about biofilms and hyperbaric.
"Hyperbaric therapy, in addition to producing reactive oxygen species, also produces reactive nitrogen species. One of these products is nitric oxide.
The effects of this compound are complex and protean with literature that goes on forever. But one demonstrated effect is the dispersal of biofilms. This may be of additional benefit."
So, maybe it has an effect on biofilms. If it truly does, then hbot may dissolve the biofilm and allow the medicine to get to it. Wouldn't that be awesome.
Another thought is that mhbot works on many, many levels. Maybe its mechanism isn't killing like antibiotics or antimicrobials.
Maybe, its mechanism is supporting and healing the body. Keeping the detox pathways open etc.
As a result, the body does not have to work on repairing etc. and has the resources to actually attack.
Just a thought.
Posted by Phoiph (Member # 41238) on :
Agreed, Soccermama!
Although mHBOT is also antimicrobial, healing is about so much more than just "killing bugs"...
In my opinion/experience, doing consistent mHBOT over time is what allows these multi-level healing/repair processes to take place...
Posted by oxygenbabe (Member # 5831) on :
It may promote candida simply the way antibiotics do, by killing off competitors. In this case, all the anaerobes, and possibly at higher pressures in clinics, some of the microaerophilic ones.
Posted by Phoiph (Member # 41238) on :
The difference being that antibiotics and hypoxia suppress the immune system, whereas HBO improves it, and good immune function is necessary to keep opportunistic organisms in check.
Probiotic supplements and a diet that includes probiotic-rich fermented foods are also important...
Posted by oxygenbabe (Member # 5831) on :
Phoiph, after I finished doing two months of deep dive I had a terrible candida flare, with frequent diarrhea on eating any carbs. It was very unpleasant.
During the deep dive, I didn't have it.
I found that if I tried to do mild hbot daily, I got what felt like yeast symptoms--chills, itchy, fluey and did not feel good. Can't prove it was yeast though because I quickly dropped it to twice a week. Wasn't going to continue with whatever flare it was causing, which did not feel like lyme herxes at all.
That's my experience, and I always did probiotics. If people are experiencing candida flares during hbot, then that's what they are experiencing. There are always side effects to every treatment.
My point was not that they are one and the same (antibiotics). My point was that you are doing something artificial, especially with deep dive (which is what you cited from hyperbaric medicine in regards to candida growth) that will alter your flora. Deep dive definitely kills off anaerobes. Mild, maybe, who knows.
Posted by oxygenbabe (Member # 5831) on :
Hyperbaric is very useful. It is a great adjunctive therapy. It is not for everybody. It is not a panacea. It is not an unalloyed good. It is not without side effects.
Posted by levity101 (Member # 1528) on :
This has been a very informative thread--and am watching the "Calling all Mild Hyperbaric users" thread as well.
Am considering this treatment. (Phoiph, if you are around, I just sent you a PM.)
Posted by Phoiph (Member # 41238) on :
quote:Originally posted by soccermama: I have not done any other research but the Lyme MD posted this on July 22, 2013. He was talking about biofilms and hyperbaric.
"Hyperbaric therapy, in addition to producing reactive oxygen species, also produces reactive nitrogen species. One of these products is nitric oxide.
The effects of this compound are complex and protean with literature that goes on forever. But one demonstrated effect is the dispersal of biofilms. This may be of additional benefit."
So, maybe it has an effect on biofilms. If it truly does, then hbot may dissolve the biofilm and allow the medicine to get to it. Wouldn't that be awesome.
Another thought is that mhbot works on many, many levels. Maybe its mechanism isn't killing like antibiotics or antimicrobials.
Maybe, its mechanism is supporting and healing the body. Keeping the detox pathways open etc.
As a result, the body does not have to work on repairing etc. and has the resources to actually attack.
Just a thought.
Soccermama...
Will W. (the cytologist who has recently started posting) shared a technical article with me on how LOW oxygen keeps antibiotics (and possibly the immune system) from penetrating biofilms:
Great link. I had to read it several times but I think it validates what Lyme MD has said.
That is great because biofilms are a huge problem.
Posted by Marnie (Member # 773) on :
I wonder if HBOT primarily hits the CWD form of Bb which maybe actually the hardest form to rid.
I also suspect barometric *pressure changes* (the aches and pains many of us old folks experience when a storm is approaching) may also impact some pathogens...setting up a "herx"/ inflammatory response as a *result of* the die-off.
It might not be a good idea to go scuba diving if you have lyme.
Persons who live at higher altitudes (less oxygen) sometimes have a tougher time if they have lyme, others do not.
Then there is a "flip side" i.e., healing warm mineral springs.
One of the best in the world is near me, but is closed because the city and county both own it and they can't agree on what to do with it. For shame on them!!!
It is called Warm Mineral Springs in Venice, Florida. It is on YouTube (videos when it was open a year ago).
All I can say is after a few hours floating in that mineral rich sink hole = feel FANTASTIC and you don't want to wash off your skin, it feels like a baby's skin.
Our guests (all ages) LOVED to go there!
Back to HBOT! Sorry...I have a tendency to go off track ;-)
HBOT is normally only "approved" (insurance covered) for treating "the bends" (scuba divers coming up too fast) and for gas gangrene (skin dying).
HBOT is also a treatment for clostridial myositis.
Clostridia ***lack superoxide dismutase***, making them incapable of surviving in the oxygen-rich environment created within a hyperbaric chamber. This inhibits clostridial growth, exotoxin production, and exotoxin binding to host tissues.
In horses, that infection can follow *IM injections* of...Ivermectin ( antiparasitic) and it is fatal.
That same drug is "Heartguard" for our dogs to prevent heartworms.
Which makes me wonder...is HBOT clearing some of Bb's foot soldiers...compatriots? Making it easier to rid #1?
Bottom line: HBOT maybe working on multiple levels from different aspects than we are currently aware of.
Posted by JCarlhelp (Member # 15957) on :
Did/does anyone use a cyst buster like Flagyl or Tindamax while doing any form of oxygen treatment. Any thoughts on this?
Posted by S13 (Member # 42830) on :
Ouch, again having problems with my heart. It skips and i get that butterfly feeling in my stomach for just a second or so.
Last time i got it after i had taken a sauna and was doing mHBOT decompression. But this time it had nothing to do with that at all! I havent taken a sauna since, i make sure i stay hydrated, and my electrolytes should be fine too. I still need to do mhbot in a few hours.
3 days a go I started diflucan which gave me a worsening of some symptoms (especially today i feel like cr*p). So having this heart problem now also, makes me think it is caused by a candida (die-off) toxin.
Posted by soccermama (Member # 35101) on :
Marnie, interesting thoughts. We could use your research techniques in this area.
Any help would be greatly appreciated.
Posted by spinning122 (Member # 42223) on :
quote:Originally posted by JCarlhelp: Did/does anyone use a cyst buster like Flagyl or Tindamax while doing any form of oxygen treatment. Any thoughts on this?
I'm currently using Tindamax with mHBOT. I'd love to try out Will's protocol with mHBOT though I don't know how I'll be able to convince my doc to prescribe so many antibiotics at once.
Posted by soccermama (Member # 35101) on :
Here is a testimonial from Sara's Garden near Toledo, Ohio. The clinic is non-profit. I am not sure how much treatments cost but the mission is to provide HBOT affordably.
Anyone in the northern Ohio area should check out this clinic.
Posted by oxygenbabe (Member # 5831) on :
I sold my Integra Sequal (to a guy who needs it for his Cpap). I am hearing that they are out of business, and that the quality of the build of the Sequal is way better than the AirSep Intensity 10, which is what is available now. I was told by one guy that you should set it at 8, not 10, as it can't handle the chamber pressure. I was told by another guy that if you set it less than 10 you won't get a therapeutic session. Phoiph and others what do you hear. They arent making Sequal anymore, because AirSep bought them out and does not want to make two. I was also told the way the Sequal was built is too expensive for this day and age, not enough profit.
Posted by Phoiph (Member # 41238) on :
I am aware that Sequal was bought out by Air Sep, and the Sequal Integra 10 has been discontinued.
I have both an Air Sep 10 New Life Intensity and a Sequal 10 Integra.
I greatly prefer the the Air Sep New Life Intensity to the Sequal Integra, because although they both offer 10 LPM air flow (liters per minute), the Air Sep has a PSI (pounds per square inch) of 20, whereas the Sequal has a PSI of 7.5.
I was advised that the Sequal should be set at 10 LPM oxygen flow prior to inflating the chamber, and then left at this setting even if the LPM drops due to the backpressure of the chamber as it fills. If the oxygen flow is set too high on this unit when using it with a hyperbaric chamber, it has to work too hard to compensate for the backflow, and the oxygen purity will decrease as a result.
An Airsep should be set no higher than 8.5 LPM when using a chamber, otherwise the backpressure will cause it to go into an oxygen "on demand" mode.
I recently had a Sequal serviced, and asked the opinion of a respiratory therapist there who owns the shop...he agreed that the Air Sep is a superior unit.
I have a source for the Airsep 10 New Life Intensity ...$1350 new, free shipping...this is the best price I have come across.
[ 05-02-2014, 03:09 AM: Message edited by: Phoiph ]
Posted by oxygenbabe (Member # 5831) on :
Vitality Medical offers the AirSep Intensity 10 with digital oxygen monitor for $1335 plus $15 shipping in USA. They are in Utah. No need to be secretive about the source, Phoiph.
I heard just the opposite. Sequal is better built and doesn't heat up nearly as much. But it's too expensive to do those quality builds these days.
Posted by oxygenbabe (Member # 5831) on :
Phoiph, you had "a" Sequal serviced, or "your" Sequal serviced. Are you stocking up on used concentrator to sell with your discount package?
Posted by Phoiph (Member # 41238) on :
Oxygenbabe,
FYI, I had "a" Sequal (not mine) serviced as a favor for someone who was too ill to lift and transport it themselves...
Your ongoing accusations are unfounded. As I have explained to you, I do not sell chambers, concentrators, or "packages". I OFFERED YOU THE OPPORTUNITY TO VERIFY THIS, BUT YOU REFUSED...
These negative exchanges are inappropriate and not helpful for anyone on the forum...
Posted by JCarlhelp (Member # 15957) on :
Agree, I believe a moderator stated earlier that their is no indication that anyone is attempting to profit from this thread. I am more interested in getting my family better and we need data from users attempting MBOT as enough time is given.
Posted by jarjar (Member # 8847) on :
I have a friend from many years ago that recovered from lyme with a home hyperbaric unit. At that time the idea of paying well over 10,000.00 just to see if I could replicate his results seemed unrealistic.
I should say I participated in one of Fife's studies at TAMU and felt an oxygen buzz for a few hours after each treatment and my bloodwork came back better. It was a CFS study and not a lyme study as I was misdiagnosed at the time. So the whole idea of having access to a more affordable used unit to use every day has my interest.
With that being said it's geting very tiring to see Oxy constantly attacking Phoiph at every twist and turn. I was glad you made your point Oxy at first that your results were not the same as Phoiph as we need to hear both sides of the story. At this point you have taken it way beyond that.
Posted by oxygenbabe (Member # 5831) on :
Maybe I'll turn out to be right. At this point, I guess I'll have to go investigate, which is not hard for me to do. I've let sleeping dogs lie until now. Engaging with Phoiph directly will prove nothing to me (she wanted me to contact her by PM because she said some folks might buy my concentrator, and I said she could have them contact me directly, not surprising that nobody did.)
My original point here is that the Sequal is a better machine, it's sad that it isn't being made anymore.
I also have given everybody, rather than saying "I have a source" which requires them to contact me privately!! for the best price (which makes me wonder, and this should not be an attack, but it makes me wonder about comissions from this source, or otherwise, just list the source!) the best price in USA, and any of you can just buy it directly from Vitality Medical. I have no problem being transparent, rather than an unnamed "source". I also know where you can get reconditioned Sequal for $650 and a two year warranty with free shipping both ways if it needs repairs (according to a doctor friend of mine). If anybody is interested, I'll post the source HERE, openly.
How is that not helpful, and open, and transparent? Why claim a source, but you have to contact me by PM!?!?!
Posted by jarjar (Member # 8847) on :
I can honestly say I talked with a seller yesterday and he said go with Air Sep over Sequal. So it's okay if you prefer Sequal there is no need for anyone to be "right" or "wrong".
As far as Phoiph asking to pm you over a business transaction, I would have done the same thing. I don't want to read all the details of someone selling something on lymenet nor do most. I would have been grateful if someone offered to help me out and would have happily used pm to discuss things nobody is interested in reading on a public board.
I inquired with Phoip about a used chamber and the only thing she has access to at the moment are small chambers so she offered to help me look at the private market such as craigslist if I was too sick to research it on my own. I as well as most of the other posters on this thread don't consider her to be the shady person you imply she is.
Posted by Robin123 (Member # 9197) on :
My understanding, from having communicated with Phoiph, is that she is not selling anything. Everyone knows that rule here and needs to abide by it on this site.
Posted by CD57 (Member # 11749) on :
Yikes, O2 babe! what is the deal with your posts re Phoiph??
Forgive me, but you sound a bit paranoid. Phoiph has freely provided her time and guidance to any of us who are interested. We have said this several times on this thread. You act as though she is hawking suspicious snake oil, when in fact she is not hawking anything....as I understand it, she was very ill and wants to share her story in the spirit of paying it forward. Oy!
Don't mean to attack *you* but I am getting tired of this....some of us need to gather all the info we can when we are ill, to make our own treatment decisions. The LLMDs just dont have all the answers. This is the frontier of mHBOT home use chambers, there really isn't data out there about anyone else having done it ... consistently and for a long time.
Posted by Toni L (Member # 42785) on :
Yikes is right! Enough O2 babe. You are not protecting me by asking Phoiph those deep, inquiring questions, you are just being accusatory and annoying. We are all grown ups here and capable of coming to our own conclusions. I'm looking for useful information and I don't give two sh!#ts whether Phoiph is selling chambers or not. It's not yours or anyone's business what she does. I have found Phoiph to be nothing but helpful, resourceful and caring. I would appreciate it if you would stop this nonsense, it is very unproductive.
Posted by Catgirl (Member # 31149) on :
I'm so bummed. I wanted to try this but my lyme specialist shot it down. He said that oxygen is bad for babesia (makes it grow). He also said that HBOT works for people who just have lyme, but not so well for people who have co infections.
But he did tell me that it does other things that are beneficial. So maybe it boosts the immune system into gear so people can fight what's making them sick. Clearly Phioph has had success with it.
He also told me that he has seen people who tried it and were told to ride the herx (keep going), but it just made them worse (maybe they did it too high--not sure?). He also didn't recommend doing mild HBOT. :(
Posted by Phoiph (Member # 41238) on :
Hi Catgirl...
I had severe babesia and bartonella.
Here is a quote from LymeMD in response to a question posted on his blog about Babesia and hyperbaric:
"Jeera" said... "...Great to know mild hyper chambers work too, but I am concerned about co infection, are not they will thrive in oxygen rich body?...like babesia, bart?
Couple of patients report of babesia , bart symptoms increased, pre hyperchamber babesia negative, but post hbot babesia positive and severe fatigue and pain in legs...
I am anxious to know your views on these..."
October 29, 2013 at 4:32 PM
Lyme report: Montgomery County, MD said... "...I know this answer is a bit long-winded. This question keeps coming up over and over again. I do not know here this myth came from. But is absolutely false. I fear it may be keeping a lot of patients away from a treatment which might be very helpful.
If this were true nobody would get better since virtually every Lyme patient has co-infections. People do Herx with HBOT so getting worse for a while is part of the process.
Oxygen does not act like a fertilizer to promote the growth of various aerobic pathogens/parasites.
What is important to hear is that HBOT creates a milieu of: a natural antibiotic, decreased swelling, improved immune function overall, healing of diseased tissues, increased glutathione and improved mitochondrial function.
HBOT is used to heal severe non-healing wounds in diabetics, patients with gangrene and other non-healing surgical wounds. All of these infections have a combination of anaerobic and aerobic bacteria. The treatment kills both. And very importantly, HBOT helps break down biofilms..."
[ 02-16-2014, 04:35 PM: Message edited by: Robin123 ]
Posted by Robin123 (Member # 9197) on :
Oxygenbabe, I deleted your most recent post for the following reason: you can post what you know here, but you are not allowed to harass another poster here, namely Phoiph.
Lymenet is a place where everyone discusses care options and we need to keep that conversation civil and considerate. Please help us keep it that way.
You're welcome to pm me if you want to discuss further.
Posted by Phoiph (Member # 41238) on :
Just to clarify...
I do post models, brands, and manufacturers names, but I don't usually name specific vendors on the public forum unless someone PM's me...in which case I give them all the resources/contact information I currently have access to.
There are several reasons for this...First of all, sometimes that would involve posting names of private sellers, reps, etc., and I don't post personal information.
Second, some of that information changes over time, and I don't want people referring to a post that is obsolete later on...in other words, I may currently have found a better resource.
I also try to make any connections I can with vendors, NOT for commissions or personal gain, but because the greater the number of people I refer to them, the better the chances that they will work with me to offer a better discount to the people I refer, and ultimately, this furthers the mission of the hyperbaric project...which is to help people access mHBOT more affordably...
Posted by Toni L (Member # 42785) on :
I have a friend with lyme who also has chemical sensitivity to a lot of things. She wants to use my chamber but the overwhelming smell of plastic makes her ill. Any suggestions?
Posted by Phoiph (Member # 41238) on :
Hi Toni...
I was also chemically sensitive when starting mHBOT, and "off gassed" my chamber and mask for a time period before using it, by letting it sit in a well ventilated room for a several days.
It is less of an issue for most people when you are actually using the chamber, as you are breathing 02 through the mask, and fresh air is being circulated through the chamber.
However, I have heard of people with severe MCS using custom masks made of alternative materials such as stainless steel.
Although I haven't needed to try this, a solution was recommended to me by the manufacturer that can be used on a chamber to reduce the smell:
1. Sponge wash bladder (vinyl portion) of chamber with a diluted detergent like "Mean Green" or "Simple Green"
2. Sponge rinse THOROUGHLY with water
3. Let dry
4. Sponge wash with white vinegar
5. Sponge rinse THOUROUGHLY with water
6. Dry w/lint free cloth
As I began to get well with mHBOT, the chemical sensitivity symptoms faded away and became a non issue. I don't have it anymore.
Of course, as always, your friend should be cleared for mHBOT and 02 by a physician, and have a prescription for both before starting mHBOT...
Posted by MichaelTampa (Member # 24868) on :
There is an environmental health clinic in Texas (can't remember the name off-hand) that sells ceramic masks for use with oxygen concentrators, and also tubes that, while plastic, are better than some other plastics, designed for those with MCS.
Posted by Toni L (Member # 42785) on :
Does anyone use their O2 concentrator for O2 therapy other than using it while in the chamber? I wonder if it would help my daughter's fatigue. I'm not asking for medical advice, just if anyone has found O2 therapy helpful.
Posted by MichaelTampa (Member # 24868) on :
Before I knew I had lyme, I used one for 2 hrs/day at 5-6 liters/minute for 4 months or so, and it was indeed helpful. Not absolutely amazing zowee, but helpful. It did improve energy. It improved oxygenation in the blood, and that is a good thing. Perhaps it was contributing to bug killing on a very low level. It did reach the limit where it was no longer helpful.
Posted by Phoiph (Member # 41238) on :
MichaelTampa...
Just to clarify...you were using an oxygen concentrator alone, without a hyperbaric chamber, is that correct?
Posted by CD57 (Member # 11749) on :
up
Posted by MichaelTampa (Member # 24868) on :
quote:Originally posted by Phoiph: MichaelTampa...
Just to clarify...you were using an oxygen concentrator alone, without a hyperbaric chamber, is that correct?
That's correct.
Posted by CD57 (Member # 11749) on :
Good to know Michael, thanks.
Posted by BBinme (Member # 34131) on :
Up
Posted by Phoiph (Member # 41238) on :
Here's the latest post on Babesia and mHBOT by LymeMD:
How is everyone doing? Please keep us posted. I am grateful that the LymeMD keeps posting about his use of mHBOT.
I want to see if Phoiph's results can be replicated.
Posted by CD57 (Member # 11749) on :
"this is not true" as regards babesia...how about that!
Posted by Toni L (Member # 42785) on :
Update: My 19 year old daughter just completed her 30th dive in our Respiro 270. She dives 5 days a week with 2 days off. She is in college 25 minutes away so this schedule is the best we can do for now.
She is also taking ASEA. I just got a text from her and she is herxing big time. Lots of very bad symptoms. Back spasms, nausea, worse fatigue than usual, headache, painful sensitive skin...
She is very toxic and won't agree to colonics so after talking online to my support group, I will be starting her on Sonne's #7 and organic psyllium husks to help detoxify her. This combo is suppose to be the next best thing to a colonic.
Many of them mentioned that Welchol has helped them detox but that is a prescription item and I'm not sure her doc will write it. Since moving to Colorado we do not have a LLMD, just a primary care doc who is lyme illiterate.
Mon and Tue are her days off from hyperbaric so hopefully she'll get through this and dive on Wed.
I'll keep you all updated. Toni L.
Posted by JCarlhelp (Member # 15957) on :
What about alkaseltzer gold or finding complimentary doc for glutathione or oral redi-sorb glutathione
Posted by Toni L (Member # 42785) on :
I'm not familiar with alkaseltzer gold or what it does. Please explain.
She does take glutathione and the ASEA she takes increases your own glutathione by 500%.
Posted by CD57 (Member # 11749) on :
would she agree to do a coffee enema? this would help big time as well. kind of a pain to do, but worth it.
is she taking abx?
Posted by JCarlhelp (Member # 15957) on :
Dr. H. gave his treatment for a herxheimer reaction at the 2010 lyme conference.
I thought it might come in handy for those of you who have never heard of it.
Here it is:
Herxheimer reaction (from 2010 Lyme Conference):
Take-home message: DETOXIFY YOUR LYME PATIENTS!
It does NOT matter what antibiotic you give people, they will NOT get better without detoxification
For Herxheimer reactions:
2 Alka-Selzer Gold (no aluminum) in 8 ounces of water with lemon or lime followed by 6-8 capsules of glutathione or 1500 mg or oral liposomal glutathione.
70% will feel better in hours
On the topic of water: Dilution is the solution to pollution. This suggests that in order to help our bodies detoxify, we must drink more water
Thank you for your input. We'll try the alka seltzer and glutathione. Coffee enemas are a no go. Does anyone else get fevers while herxing?
Posted by Toni L (Member # 42785) on :
Tried the alka seltzer and glutathione. She is on her third day of 103 fever and is absolutely miserable. Fever has never been one of her herxing symptoms. ?
Posted by levity101 (Member # 1528) on :
Hi, just want to chime in and let you know that we are beginning mild HBOT today at home with a rented chamber. My 24yr old son and I will be using it.
He has been sick since age six, dx at 10 with Lyme, and later with Bart and Babs and has been in treatment since. We've been seeing one of the top LLMDs for several years with some improvements but then relapses. We've tried many modalities except the oxidative therapies.
He has had a continual headache for 12 years which has been resistant to any treatment. Lately, his herxes are so intense that we're giving abx a break.
I also have Lyme and Babs and Lyme-induced RA, and am doing fair on mino and herbals but will be treating myself as well.
I will check in frequently and am hopeful about this modality but know it will take time and commitment. Thanks to everyone who is participating here.
Posted by levity101 (Member # 1528) on :
Hi Toni, Sorry to hear that your daughter is having such a rough time! I would think that having that high a fever for three days might indicate a viral infection, although it is possible to have some fever with herxing, I think--but that sounds unusual to me.
You didn't mention if she has co-infections? My son has experienced fevers immediately after treating aggressively for Babs--don't know if it's been documented much, but it seems to have happened with him.
Whether viral, bacterial or a herx, I would take it easy for a few days and if the detox remedies aren't working she may just need to rest and get plenty of liquids. Hope this passes soon--keep us posted.
Posted by Phoiph (Member # 41238) on :
Toni...
I just emailed you...
I don't believe this is a "herx", and think she should go to urgent care to be checked out just as a precaution.
With the high fever, headache, and the fact that she's in college, they may screen her for spinal meningitis, just to be on the safe side.
I know that as my immune system came back "on line" from mHBOT, I had a few flu/colds from hell...which is actually a good sign, but think in this case it should be checked out regardless...
Posted by levity101 (Member # 1528) on :
good idea...best to be safe!
Posted by Toni L (Member # 42785) on :
Her fever has not stayed at 103 but it fluctuates up and down. Today it has not gone above 100, BUT her normal temp is 97.4 so it's still up there. She took some advil and tylenol and it's at 98.1 now. I'm waiting for a call from her dr.'s office, which will most definitely be a nurse. They know nothing about lyme, herxing, detoxing or anything concerning chronic illness.
She had the meningitis vaccine when she moved into the dorm but that is still a concern.
I did some research into "herx and fevers" and some people to get fevers when they herx. It's all a bit disconcerting and I'm a wreck waiting for the nurse to call.
Thank you for your input and support. My hope is she comes out of this a little better than when it started (Monday morning).
Posted by Toni L (Member # 42785) on :
Went to the doc yesterday and he doesn't know why she has a fever other than it's viral or an infection. They are doing CBC and urine and a mono test.
Today she hasn't had a fever but she is sweating a lot. I don't understand that. She drinks lots of good water. Everyday I give her some detox supplements but she's always queasy so it's hard to take sometimes.
I haven't seen her this sick in a while and this kid has been through hell. I really hope she doesn't have mono on top of lyme.
Posted by 2roads (Member # 4409) on :
Toni,
I think it's could she's sweating.
I do so when I'm really sick, and my body is finally kicking in to fight.
It's killing microbes, taking toxins, and kicking butt.
Keep her hydrated.
Hang on, it should be over soon-
Posted by 2roads (Member # 4409) on :
"good" not could........ugh
Posted by Toni L (Member # 42785) on :
Thank you so much for your support through this rough patch. Olivia's blood work is back and she has Mono. Fatigue on top of fatigue. This kid can't catch a break.
We had to stop mHBOT until she feels better. I suppose you lose progress you made when you stop. This is the second time she's had to take a break from it due to illness.
Posted by CD57 (Member # 11749) on :
Oh my gosh Toni! that is just awful. Mono is EBV I think.
On the bright side, perhaps it is a good sign that she is getting the mono, as it means her system may have been buoyed by the mHBOT enough to mount a response to this virus? Kind of like IRIS in AIDS patients when they are on road to recovery?
Please keep us posted. Phoiph will hopefully stop by with some good info.
Posted by Phoiph (Member # 41238) on :
Toni and I have been in touch...
Toni's daughter will continue using mHBOT, as it has antiviral properties and increases white blood cell production to assist the immune system in fighting the virus.
I had a raised EBV titer (activated EBV) when I started mHBOT also...many people who are very ill with Lyme do.
Up to 95% of the general population carries EBV, which usually lies dormant, but can become activated when the immune system becomes compromised by Lyme or other chronic illness.
There is also some suggestion that EBV might work synergistically with Borellia...
Posted by Brian (Member # 43432) on :
Hello all,
Thank you to everyone here for posting their experiences with mHBOT. I am considering one for the home and was brought here via a google search for answers. This thread has been enlightening to say the least.
I noticed that the Vitaeris is popular with folks... I was wondering if anyone has used one of the Healing Dives versions or worked with the company before.
I favor Oxyhealth, because although they may be more expensive, they have been around the longest and have a perfect safety record. Their chambers are also easier to use, as they don't involve buckles.
The Vitaeris is popular because it is the largest chamber, and is often used with children with autism, because an adult can "dive" with the child.
I use the Respiro, which is the middle size. It is a personal choice based on comfort level and cost.
I have also worked out an arrangement with Oxyhealth where I am granted a discount on new and used chambers. I pass a portion on to the buyer, and the rest goes into a fund held by Oxyhealth to be used toward a chamber(s) to be placed in the community (for qualifying persons who can't afford treatment to be used on a donation basis...donations to go toward rental of space and repairs). It is a win-win situation.
I am not a sales rep, nor do I sell chambers or concentrators, and I do not take commissions. I do, however, help people find creative ways to access chambers through cooperative use and/or financing. The above is only one option, there are others to consider.
I do this because I became well via mHBOT, and feel it is a underutilized and misunderstood treatment option.
You can PM me for more info if you like...
Posted by CD57 (Member # 11749) on :
that is great re Toni's daughter Phoiph, thanks for the info! I hope she gets it under control very soon.
Posted by oxygenbabe (Member # 5831) on :
I am going to confirm this in writing, but I spoke with Oxyhealth twice in the last month. Nobody there knows anything about this. Those who would know said there is no such thing.
In regards to: "I have also worked out an arrangement with Oxyhealth where I am granted a discount on new and used chambers. I pass a portion on to the buyer, and the rest goes into a fund held by Oxyhealth to be used toward a chamber(s) to be placed in the community (for qualifying persons who can't afford treatment to be used on a donation basis...donations to go toward rental of space and repairs). It is a win-win situation."
They said they don't have such a fund, and that it would not be legal anyway (to grant one person a discount, and use half the discount for a fund--for whom? and how do they "qualify"). But I will follow up on this in writing.
Posted by CD57 (Member # 11749) on :
O2 babe.....PUH-LEASE don't start again......
Posted by Phoiph (Member # 41238) on :
Oxygenbabe...
Earlier in this thread, I offered you a chance to PM me, so I could give you the rep's name at Oxyhealth that I have the agreement with, so you could confirm the arrangement and put your suspicions to rest.
You refused.
Posted by mbdq (Member # 26277) on :
This discount arrangement with Oxyhealth is true and I personally utilized it.
I received a discount on my chamber of which a portion was set aside in a fund for future use to put a chamber in a needy community.
I have a respiro. And I make my final payment on it tomorrow.
I think it is one of the best things I have done to help me recover from chronic lyme. You could not get me to return that chamber at this point.
I am extremely grateful for the opportunity to purchase it at a discount with the help of Phoiph.
Posted by levity101 (Member # 1528) on :
mbdq, glad to hear that you are happy with your chamber. I saw your post from February on your progress in another thread. If you feel like it, I (and I'm sure others) would love to hear your update. So glad that you are seeing progress!
I, also, want to say that Phoiph has been instrumental in helping us get set up with a chamber. Even though we didn't end up getting it through her, she is continually supportive in helping us figure out logistics--I appreciate her ongoing help very much.
Posted by oxygenbabe (Member # 5831) on :
Sorry, but I will have to confirm it in writing from Oxyhealth. That's fair.
Posted by Looking4hope (Member # 43181) on :
I too received a substantial discount from Oxyhealth as a direct result of Phoiph. Mbdq, can you please tell me where I can read more about your story here on Lymenet?
I just received both my Chamber from Oxyhealth, and my concentrator via another company a little over a week ago. Phoiph, has also helped me every step of the way (IE), everytime I have a question or concern(-: I will try to keep you guys updated on my progress every couple weeks.
After completing "Seven Dives", varying in duration from 1 hour, to 30 minutes I have experienced some "Flares or Herxeimer", like reactions which are to be expected.
I have decided to cut my dives back to 30 minutes @ five days a week until I can tolerate the "Flares or Herxeimer" reactions.
I purchased a Solace 220 directly from Oxyhealth, and an Airsep concentrator from another party. I'm following for the most part a "Paleo" based diet and drinking lots of water. At present time I am for the most part homebound, only leaving the house when it's absolutely necessary.
[ 03-20-2014, 12:43 AM: Message edited by: Robin123 ]
Posted by Looking4hope (Member # 43181) on :
I think it should also be noted that everytime, I have a question or concern Oxyhealth has been very supportive as well.
I really looked around with the help of Phoiph, before ultimately going with the "Solace 220" as previously stated from Oxyhealth.
I learned very fast much like all commerce (IE) prices change regularly, Not all chambers are created equally, and last but not least you get what you pay for just like anything else!
It was really nice to have someone like Phoiph, helping me out on an item which is fairly expensive.
On the days I felt well enough I called various companies, middlemen, etc for information pertaining to chambers. With a little research anyone...even those of us with Lyme induced Encephalitis can see this is a fairly "Large Business".
With the aforementioned being said, I'm not saying someone couldn't possibly be helped using another companies line of chambers...as I'm sure some have.
I just knew for me personally I felt comfortable knowing the chambers history, warranty info, and how I would ultimately pay for the chamber when the time came.
I also know that each and everytime I have had a question "Post Sale" in regard to my chambers performance Oxyhealth has been more then helpful.
I'm learning as much as about hbot on the days I feel like my "Brain Fogg Engulfed", brain will allow me to. On the days I can't figure things out on my own it's nice to know that I have both Phoiph, and Oxyhealh as resources....oh and Lymenet as well!
[ 03-20-2014, 12:45 AM: Message edited by: Robin123 ]
Posted by spinning122 (Member # 42223) on :
O2babe, I appreciate that you continue to share your knowledge and resources with us, but I'm not quite sure why you are so hellbent on vilifying Phoiph. She is not the fraud you are making her out to be.
I am incredibly grateful to Phoiph for all that she has and continues to help me with, and yes that includes a discount on my Oxyhealth Respiro.
We are so lucky here on Lymenet to have people like Phoiph who have recovered and continue to reach out with the goal of helping others.
I know that with my Lyme brain and exhaustion...I'm in horrible condition, I would not have been able to put together the chamber/concentrator if it weren't for Phoiph's support and extremely useful set of directions.
---- Back on topic, I have completed 38 dives and continue to enjoy little to no muscle/joint/bone pain. No improvements elsewhere, but I am only starting on this journey.
Thank you to everyone who continues to update us on your/your loved one's progress!
Posted by JCarlhelp (Member # 15957) on :
spinning122,
How intense was you muscle/joint/ bone pain before MBOT.
Posted by BBinme (Member # 34131) on :
Those of you diving, can we have a update?
Posted by spinning122 (Member # 42223) on :
JCarlhelp,
My pain was constant, extreme, horrible. On a scale of 1-10 it was always around a 9 or a 10. I had the "fibromyalgia"-like pains, everything ached, felt swollen, my joints, spine, hip pain was extreme. Every time I moved my joints would crack and pop. I started limping because my left hip started giving out on me. It was pain that painkillers and muscle relaxants couldn't touch.
Around 15 dives in (regular HBOT) I realized I had no more pain in these areas. The pain has not returned, as I continue to dive daily with mHBOT.
Posted by levity101 (Member # 1528) on :
spinning,
Another question, if you don't mind, were you taking antibiotics or herbs while doing the regular HBOT, and now with the mHBOT?
Glad to hear of your improvements!
Posted by spinning122 (Member # 42223) on :
levity, yes, on oral antibiotics. I have been on Biaxin + Tindamax the whole time with HBOT and mHBOT.
I would love to be able to get to remission with purely mHBOT treatments like Phoiph did... that way we wouldn't have to play the guessing game ...with so many variables affecting the outcome. Who knows which drugs are helping/hindering progress? But I'm not courageous to drop everything just yet.
An update for you guys. Saw my LLMD yesterday. Babesia is back, tested positive for B. Duncani again. I had previously treated for 9 months on Mepron and Biaxin. Did not have any babesia symptoms for the whole duration of HBOT. After a bout with the flu in January, (what I consider to be) coinfection symptoms flared up again. Air hunger, night sweats, fatigue, headaches, swollen lymph nodes, sore throat, spleen pain, liver pain.
Posted by levity101 (Member # 1528) on :
spinning,
oh no...sorry to hear that the Babesia is rearing its head again. My son and I have both relapsed several times with Babs...very tough to get rid of.
We used Cryptolepis and Sida Acuta after months of Malarone. Hang in there and hope you get it under control soon.
Posted by spinning122 (Member # 42223) on :
Thanks levity!
Posted by JCarlhelp (Member # 15957) on :
Spinning, are you taking any for of glutathione or glutimate or precursor supliments. I think Beau Seiberts article sheds some real important concerns on this.
Posted by spinning122 (Member # 42223) on :
Right on JCarl... I read through whole thread about glut/glutathione and babesia a few days ago.
Unfortunately, too late... I had been getting IV Glutathione 3x a week for months during HBOT treatment. Have been getting it once a week since
I'm curious if others had any Babs flare up after glutathione supplementation. Input?
Posted by Phoiph (Member # 41238) on :
HBOT/mHBOT has historically suffered a "bad rap" when it comes to Babesia...(unfounded, based on my research/experience).
Maybe the actual connect is too much concurrent IV glutathione (which could possibly protect Babesia from HBO)...?
Posted by JCarlhelp (Member # 15957) on :
First of all I am not a doctor and this question and the interpretation of the article should be addressed to your doctor. My son did HBOT last month beginning with improvement but crashed right around the time I.V. Glutathione was introduced. This needs further exploration by lyme literate doctors.
Posted by JCarlhelp (Member # 15957) on :
Spinning, were you on babesia treatment during HBOT or MBOT?
Posted by spinning122 (Member # 42223) on :
I was done with my babesia treatment (Mepron+Biaxin) about three months before I started HBOT, so no I was not on any babesia treatment during.
Funny thing, I brought up IV Glut to my doc when I first started it, and he was not in support of it. I'm fuzzy about why he objected... something about how supplementing it naturally protected the bugs, decreased the immune system's own strength to fight off these infections (don't quote me! Lyme brain!) Anyhow, I decided to go ahead with it because so many people were saying that it helped with herxes detox yada yada.
JCarl, so interesting that your son crashed around the time IV Glutathione was introduced. Has he discontinued it? I didn't "Babs-relapse" until after I stopped regular HBOT.
Phoiph, good point regarding hbot+babesia, concurrent IV glut. The question you bring up about it protecting babs is not to far off from what my doc trying to tell me...
Posted by levity101 (Member # 1528) on :
JCarl, could you please point me to 'Beau Seiberts article', that you mention? thanks
Posted by JCarlhelp (Member # 15957) on :
OK, this is what happens when you try to reply on an Iphone, wasn't trying to make a triple point. I think this is a complex question with the possibility of a number of different conclusions but well worth being aware of.
Posted by Phoiph (Member # 41238) on :
One of the ways HBO works to kill pathogens is by "Reactive Oxygen Species" (ROS), also known as "Free Radicals". Our own bodies also produce these free radicals naturally in a defensive response to infection.
Fortunately, it has been shown that our natural antioxidant production also increases when using HBO to protect our cells, thus keeping a balance.
It makes sense in theory that too many supplemental antioxidants (e.g., I.V. Glutathione) may thwart the HBO process by upsetting that balance...causing an abundance of antioxidants that inadvertently protect certain pathogens...
Posted by levity101 (Member # 1528) on :
yes, very complex..thanks for the link.
Posted by CD57 (Member # 11749) on :
Phoiph et al....one thing I don't get about HBOT...if we are experiencing an abundance of free radicals with this treatment, shouldnt we in theory be taking anti oxidants exactly like glutathione to protect us? At the very least Vitamin E?
We don't hear too much about this. Does Harch or anyone else in the know recommend antioxidants when undergoing HBOT treatment?
Posted by Phoiph (Member # 41238) on :
CD-57...
The effects of mHBOT on oxidative stress and antioxidant status has been studied by Dr. Rossignol with children with Autism:
"...This prospective open-label pilot study in children with autism indicates, as measured by changes in plasma GSSG, that HBOT ranging from 1.3 to 1.5 atm and 24% to 100% oxygen was not significantly associated with increased intracellular oxidative stress..."
"...A review of the literature indicates that oxidative stress can occur with HBOT but appears to be less of a concern at hyperbaric pressures under 2.0 atm [58]. In fact, with long-term and repeated administration, HBOT below 2.0 atm can actually decrease oxidative stress [59-61] by reducing lipid peroxidation [62], and by up-regulating the activity of antioxidant enzymes including SOD [60,63], glutathione peroxidase [64], catalase [65], and paraoxonase [62,66]. Furthermore, at the pressures examined in this current study (1.3 to 1.5 atm), a search of the literature failed to identify any studies indicating that oxidative stress worsened with HBOT..."
I think it is very important to eat a diet rich in antioxidants, and possibly basic supplements, but am concerned that over-supplementation might counteract the mechanism that HBO uses to kill pathogens...which is, in part, via reactive oxygen species (ROS)/oxidative stress/free radicals. Apparently our bodies are able to compensate by raising natural production of antioxidants to protect our own cells...
Posted by mbdq (Member # 26277) on :
Great discussion. I put an update of my progress on the other mild hyperbaric thread.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by JCarlhelp: OK, this is what happens when you try to reply on an Iphone, wasn't trying to make a triple point.
-
**** I just deleted NUMEROUS "duplicate posts" .. If you accidentally make a duplicate post, please edit it out.
Click on the "pencil/pad" icon and click "delete" then "edit post."
Thanks.. I think everyone on the thread will appreciate it! ****
(JCarl.. sorry to "single you out".. many here are having the same experience)
Posted by soccermama (Member # 35101) on :
Interesting article on how ten days of mHBOT helped improve brain function for people exposed to mold
Not sure if the results are lasting but it is encouraging. Also, just mHBOT no supplemental oxygen.
Posted by CD57 (Member # 11749) on :
Moderators what happened to Lookingforhope's post?
Posted by Looking4hope (Member # 43181) on :
CD57, The Powers to be here deleted it! I'm not going to repost here as it simply isn't worth the frustration. I thought this was an open forum conducive to helping one another for altruistic reasons? A simple reply from the moderators here explaining why my post which I was in the process of posting "Part 2", was rejected by the mods here?
Posted by soccermama (Member # 35101) on :
Looking4hope, PLEASE continue your posting on if and how you are improving from mhbot. Many of us (including myself) are watching this thread to see if mhbot is worth the investment.
Posted by Phoiph (Member # 41238) on :
I had a great visit yesterday from someone from Canada who I had helped get started with mHBOT via phone 1-1/2 years ago. We had not met previously.
She had been very ill with a long history of Lyme and Babesia...homebound...and needed 24 hour supervision at that time.
She has used her chamber daily since then, and considers herself well now.
She brought a friend with her who had been with her throughout her ordeal and subsequent recovery. Fortunately, they both allowed me to do a video recorded interview...
Posted by Lymetoo (Member # 743) on :
The moderators only removed DUPLICATE POSTS. When I posted the above, LN was experiencing problems and things got crazy. That is probably why there were so many duplicates that night.
Feel free to post whatever it was again.
Thank you for eliminnating any duplicates that might occur.
Posted by jarjar (Member # 8847) on :
I purchased a used Respiro a month ago so I have about 30 dives to give you feedback from. I do thank Phoiph for guiding me thru the purchase even though I did not purchase it from her connections.
As I told Phoiph in an email earlier I remember her saying after she did about 40 dives she considered returning the chamber.
In my case after 20 dives I would have said "over my dead body does this chamber leave this house"! Phoiph was more ill then me when she started out and I have my gb4000 with MOPA to thank for that. I still was not well enough to return to work though.
I was able to find a used 08 Respiro for 5,750.00 with oxygen concentrator. My only regret is that I wish I had purchased one years ago when I had a friend from a support group recover with a chamber. I thought he was just one of lucky ones as there no data for home chambers with lyme.
Since I'm only 30 days into this deal all I can say is that I'm pleasantly surprised at the direction my health is going in such a short period.
I continue to use IFR suana, supplements, collodial silver and rife which seems to be more effective combined with MHBOT.
Will post another update in a month or so.
[ 08-05-2016, 06:22 PM: Message edited by: jarjar ]
Posted by levity101 (Member # 1528) on :
Phoiph,it's great to hear another success story.
JarJar, please keep us posted--really glad to hear of the direction that your health seems to be going.
It's too early to report much on our end. Took us a while to find a mask to fit my son, and now he's been up to 60 min/day with oxygen for the past week.
Editing with a question, Phoiph, was the Canadian woman doing MHBOT alone or did she combine with abx or other treatment?
[ 04-02-2014, 11:12 PM: Message edited by: levity101 ]
Posted by jarjar (Member # 8847) on :
Not sure if this has been posted, thought it belonged in this thread. Notes from 2013 ILADS meeting,
Dr S** spoke on "Hyperbaric Oxygen Therapy in the Management of Lyme Disease".
There are soft shell and hard shell units available, but soft shell units cannot go to the depths of the hard shell units.
1 ATA is sea level. 3 ATA is 66 feet below sea level; a hard shell unit can go to this level where soft shell units can only go to about 1.3 ATA.
HBOT therapy can provide the body with 22 times more oxygen.
Stimulates over 5,000 genes. Increases growth factors, reduces swelling, promotes the growth of neural pathways, activates sleeping neurons, increases ATP, and downregulates inflammation.
Dormant mitochondria produce 2 ATP; whereas after HBOT, 36 ATP may be produced. VEGF increases which is associated with improved blood flow. Stem cells may be stimulated.
HBOT may have an antimicrobial impact being both bacteriostatic and in some cases bacteriocidal for anaerobic infections and even some aerobic. HBOT may create a toxic environment for Borrelia.
Interleukins, TNF-alpha, and others improve. If one has a genetic predisposition to biotoxin-associated illness, HBOT may improve outcomes.
1.5-2.0 ATA may support detoxification. 2.4 ATA may have antimicrobial effects and support reducing inflammation. HBOT may help minimize Herxheimer reactions.
.................................................. Breaking this up for easier reading for many here - Robin
[ 04-05-2014, 12:11 AM: Message edited by: Robin123 ]
Posted by Looking4hope (Member # 43181) on :
Below is what I originally posted here on Lymenet close to two weeks ago or March, 23 2014....hope this helps(-:
I'm relatively new to these forms so before I proceed I would like to give a brief history. I'm a 37 year old male who went from being a very busy Personal Trainer, working ridiculously long hours to near collapse over 2.5 years ago!
Like many hear my body was giving signs my "System", was breaking down (IE) frequent colds, headaches, and intermittent nausea. I attributed the above symptoms at the time to a very nasty divorce, coupled with work related stress, and poor sleeping patterns.
Around June of 2011, I became really ill with all the typical Lyme "Trimming And Fixings". I had a really stiff neck, excruciating headaches, intense nausea, relentless fatigue, dizziness, and an overall feeling of not feeling well.
I took a leave of absence from my job at the time....not exactly easy when you have anywhere from 26-32 clients and averaging anywhere from 120-140 sessions a month as a trainer.
Nonetheless, I left then came back only to leave for good in December of 2011, as I was now sicker then ever!
It should be noted during this time I voluntarily went to the ER, saw numerous Doctors, who all stated they couldn't find anything wrong with me. I became so sick, I had to move back home with my parents in another state.
2012 was filled with a series of "Ups And Downs". After doing a great deal of research I suspected based on my symtomology I was a fairly good candidate for having contracted Lyme Disease. I decided to consult with an LLMD or Lyme Literate Medical Doctor in July of 2012.
During the appointment I was given an Igenix testing kit. Feeling I was already getting better doing my own treatments at the time...I elected not to go through with the testing.
Looking back...part of me didn't want to face the grim prospect I had this "Big Green Monster", called Lyme Disease to possibly deal with!
So I packed up my bags, and headed back to where I was living before I fell ill.. where both my son and girlfriend were residing.
Within a couple months of moving back, I started getting sick again. The following year was in which I would get sick, then "Kind Of Rebound", then get sick again.
It wasn't until around April of 2013 that I awoke one morning to what can best be described as a "Living Purgatory". Everything was "Off",
I had trouble speaking at times, couldn't tolerate loud noises, couldn't think clearly, had intense head pressure, and had to force myself to keep my eyes open. I truly thought I had endured some sort of stroke during the night time hours.
These symptoms became progressively worse over the next month ultimately forcing me to move back home to another state once again.
Upon arriving home I had an MRI performed with and without contrast. The MRI showed small whitespots on my frontal lobes. My neurologist stated I had nothing to worry about, and there was no need to test for Lyme Disease.
I proceeded to tell her, I still wanted to go through with the test. Shrugging her shoulders and shaking her head she reluctantly agreed.
Two weeks later my test results come back "Inconclusive". She then states via the phone I don't have Lyme Disease and I'm simply wasting my time. I told her I respectfully disagreed with her and hung up the phone.
I then went back to the LLMD, I originally saw in my hometown and had my blood work sent to Igenix. Not to my surprise my test came back "Positive", for Lyme Disease meeting both CDC criteria as well as Ig Igenix criteria for diagnosing such.
I didn't test positive for either "Bart", or "Bab", however that doesn't necessarily mean I don't have either one or possibly other "CO-INFECTION"?
The last year has been filled with a very wide and dizzying assortment of "Lyme Disease" treatments.
The only thing that "Kind Of Worked", was various forms of Ozone Theraphy. With that being said I still intuitively knew after roughly six months of Ozone Therapy it wasn't going to do everything I was hoping it would do.
I continued to lose weight going from 5 "9" weighing 170lbs with 7% bodyfat in early 2012 to 140lbs.
My encephalitis also continued to spiral out of control! It was roughly 60 days ago....I won't go into all of the "Gory Details", however I really was losing all capacity to continue living on this great big old "Spinng Rock" also referred to as planet earth.
So at this point I'm basically homebound, spending a ton of time in bed. So there I was lying in bed with my Kindle Fire, which has a couple tabs opened one of which was "Lymenet".
I somehow stumbled upon this thread and just started reading. I had heard of HBOT in the treatment of Lyme Disease, yet I had never heard of "Mhbot".
The more I read the more interested I became. Let me rephrase that....I became as interested as someone with Lyme Encephalopathy might be able to become? I was still miserable, both Physically and Mentally yet I continued to read.
I saw these posts from someone in Arizona who goes by the username "Phoiph", here on Lymenet. After reading all of the posts I very reluctantly reached out to Phoiph via private messaging here telling Phoiph just how sick I was.
It was only after hearing about Phoiphs experience first-hand which BTW gave me the chills as they were earaily similar to mine!
I truley thought I was the only one on earth who felt the way I did. It didn't matter how many testimonials I read from others on various "Lyme Boards"....I truley thought my case was unique and different before hearing Phoips story!
Let me further state that no one can make this "Stuff Up"! It's one of those things where it "Takes One To Know One"!
I believe even the brightest of minds filled with compassion can't begin to grasp on the most elementary of levels just how painful this disease can become!
So after working with Phoiph for a couple weeks intermittently via email and such, and seeing my Dr I place an order for my chamber through Oxyhealth.
However before placing the order I went to a naturopathic clinic here in town and tried out "Mhbot" first hand.
Now remember at this point I had been basically homebound for months, and was extremely nervous even being around people.
After the treatment I wouldn't say I felt any different, with the exception of one little caveat. I drove myself to the store when I was done with the treatment....something I hadn't done in close to two months.
Four days later my chamber arrives, and I do my first official dive by myself with supplemental O2. Again when the session is over I get out and don't feel any different.
The next day however I'm herxing like crazy, yet I dive again for another hour with supplemental O2.
I reach my fith dive and I'm now looking at the chamber which lays on my bed next to me with "Great Despise"..LOL! I'm herxing like crazy, and decide to cut my dives back to 30 minutes.
It was after my "Ninth Dive", which I did without Oxygen for thirty minutes that I began to start feeling "Different".
I Can't put my finger on it...the only thing I can tell you guys is that it felt like something was working on a "Really Deep Level".
I can tell you without question that when the chamber was deflating it felt like my brain was "Waking Up", as I just lied there motionless in the chamber.
The last four days has been filled with energy, and my Brain fog has decreased by at least 50%. I know it's still to soon to tell what's going to happen as I continue Mhbot,
however these changes are near unbelievable for those who have seen me at my worst over the last couple years.
"Update" 4/3/2014...I continue to do Mhbot, for 30-40 minutes five times a week. I continue to make progress each and every day...with some herxing here and there.
I missed Four days due to travel...my first time on an airplane in three years followed by rigorous walking while away!
For now I'm SOLEY using just the chamber without supplemental oxygen or the oxygen concentrator. I Just couldn't handle the Herxs when using 02..again everyone is different.
Eventually I will resume with supplemental oxygen, which ultimately I feel intuitively heals me personally on a deeper level. I simply need to work up to it as this is a progressive processes.
I'm not a doctor, so please don't take what I'm doing as any type of medical advice etc. Everyone is different, in regard to how they handle dieoff.
I don't subscribe to the "More You Herx", the better camp. Most here have already been sick for far to long and don't need to feel even worse. As Phoiph, says here on these boards "Slow And Steady"!
I'm not using Antibiotics, just Mhbot and I'm following a Paleo diet 80% of the time. I should be Paleo 100% off the time, as it's not only condusive to treating LD, and Co-infections but also helps in my experience with my Herxs.
I also drink as much purified water as possible, which helps my Herxs.
If anyone has any questions feel free to "Fire Away", that's how we learn...good luck to all of you.
................................................
Breaking up the text for easier reading for any here -
[ 04-27-2014, 11:29 PM: Message edited by: Robin123 ]
Posted by jarjar (Member # 8847) on :
Hope, are you using anything to clear out the toxins when you herx? I have to keep chlorella, liquid bentonite clay and charcoal around.
You should be able to accelerate your healing when you are able to get the toxins cleared out of your body faster.
I will send a pm showing what I use and where I order.
Posted by CD57 (Member # 11749) on :
Hope, I am so glad you came back to post! yay. I have also been working with Phoiph and she is a godsend and a savior. She was also very sick and abx did not work for her, nor have they for me (although they sort of seem to keep stuff getting worse).
What forms do your herxes or flares take? What kinds of symptoms do you have.....brain fog, psych, nerve pain, gut pain, muscle, etc?
So interesting that you are not using the O2 also....I think Phoiph has posted about another woman doing that as well.
You are very lucky that you have seen results so quickly, that is pretty amazing.
Posted by Looking4hope (Member # 43181) on :
My herxs are mainly deep throbbing headaches, with an occasional "Retracing", of old symptoms.
The old symptoms coming back are back pain, and nausea at times. When the body heals or begins to heal for that matter this phenomenon often occurs.
As far as my symptoms pre Mhbot go....I was pretty much as "Bad", as Phoiph at times. Horrible burning pain all throughout my body which literally felt like acid was being poured all over my body!
This coupled with intense nausea, chills, flulike symptoms, pain, numbness in both hands and feet, horrible fatigue, insomnia, sleeping to much, agoraphobia, depression, OCD, Anxiety, and Encephalopathy!
Out of all of these symptoms... I would have to say the encephalopathy was the worse hands down! I really have a tough time talking about it as it was the most traumatizing thing I have ever been through.
I would be willing to expand on this for you guys...however it's pretty frightening to say the least.
As far as detox goes Mhbot, will eventually do just that...especially when I add 02 again.
I have tried everything from IV L Glutathione, to my own Infrared Sauna, bentonite clay with Pyhsillium Husk, and to many other things to mention.
In my opinion the less variables the better. How can one truly know what's working, and what's not working if they add to many variables to the equation?
On top of that I believe you have to ask yourself the question....are all of these variables I'm adding even sustainable long term?
Mhbot is incredibly simple, even when following a Paleo Diet. With the aforementioned being said sometimes the simplest of things are the most difficult for many to execute.
As a formal competitive natural bodybuilder, and personal trainer....I had witnessed this for years observing clients who couldn't follow a very simple "Meal Plan", or regular training schedule.
[ 04-27-2014, 11:32 PM: Message edited by: Robin123 ]
Posted by Looking4hope (Member # 43181) on :
I also wanted to add that my "Brain Fog", is just about completely gone! Also worth mentioning is the inital surge of energy I get from Mhbot right after I get out of the chamber.
This burst in energy usually lasts for roughly 12 hours or so now, before a herx comes on. I then get complete wiped out..
largely attributed to all of the things I'm trying to do that I haven't been able to do both physically and mentally in three years.
I have a long way to go, however for now I will take "Colors Seeming Brighter", "No Sound Sensitivity", "A more relaxed disposition", and a more physically capable body.
I'm not benching 365LBS, Deadlifting 450LBS, and Squatting 315LBS as I used to before getting Sick.
For now my exercise simply consists of walking...often times barefoot to attract the energy from the earth. I also try and get moderate amounts of sunlight when available.
[ 04-27-2014, 11:33 PM: Message edited by: Robin123 ]
Posted by CD57 (Member # 11749) on :
Hope did you not do any antiobiotics?
Posted by Looking4hope (Member # 43181) on :
Hey CD57, no I have never personally used antibiotics..in regard to treating Lyme Disease, and Co-infections. I truly believe I was infected when I was in the fifth grade.
I spent two hours trying to remove the ticks at the time which were deeply imbedded in my Private Area...Yah OUCH! Later that year I started experiencing horrible headaches.
At age 21, I had a catheter ablation surgery after being diagnosed with SVT, or Supra Ventricular Tachycardia. Now looking back I'm almost positive these were all early manifestations of LD.
[ 04-27-2014, 11:33 PM: Message edited by: Robin123 ]
Posted by CD57 (Member # 11749) on :
That is amazing story. You have such good early results hope it keeps going. Keep posting! Didn't the LLMDs want to use antibiotics?
Posted by Lymetoo (Member # 743) on :
Looking4Hope .. Please leave more space between paragraphs for easier reading. Most here cannot read large blocks of print.
Thanks! Posted by Looking4hope (Member # 43181) on :
CD57, My LLMDS and myself never really discussed the whole ABX thing simply because I never followed up with them.
I just found myself observing many spending both allot of money and time on both LLMDS, and ABX who were still sick years later.
ABX, do work for some no doubt about it. However I'm a very intuitive person and didn't feel they were for me.
I have many reasons for not going the ABX route personally.....most of which involves the duration of time I believe I have had LD.
Posted by Looking4hope (Member # 43181) on :
I also recently saw a very prominent Lyme Doctor, and actually have a follow up via the phone in roughly two weeks.
I will comment more on this experience if I feel any value can be extracted from it for you guys and gals here!
Posted by jarjar (Member # 8847) on :
Phoiph, thanks for sharing the story of the lady in Canada. The more "I recovered" stories the better.
It also dovetails with your personal story. Give it time and don't expect miracles overnight.
Posted by jarjar (Member # 8847) on :
quote:Originally posted by Lymetoo: Looking4Hope .. Please leave more space between paragraphs for easier reading. Most here cannot read large blocks of print.
Thanks!
Betty G approves of this message!!
Sorry I couldn't resist. Posted by Phoiph (Member # 41238) on :
I posted this experience I had recently on the "Family Diagnosed With Parkinson's" thread, but wanted to include it here also:
"...A volunteer where I work has a husband who was diagnosed with Parkinson's and dementia (no telling if it was Lyme induced), and she was unable to care for him anymore at home. He was using a walker and falling frequently, would sit and stare for hours, and needed 24 hour supervision.
She finally agreed to have him see my friend, who is a neurologist and also runs a hyperbaric clinic with a 6-person chamber. He was prescribed a block of 40, 1 hour treatments at 1.5 ATA (considered "mild" hyperbaric, or "mHBOT"), with further treatments if necessary.
At 20 treatments, there was no discernible change, according to the wife. At 39 treatments, the wife flagged me down as I drove into work, and told me her husband's dementia was "gone". She also said he was walking without a walker, using a cane only, on occasion.
A week later, I asked her how he was doing, and she said she had left him home, because he was busy building something in his workshop (using power tools). She said he had been talking about the future, and making plans to travel. She said he was "back". They plan to do another block of treatments, and/or possibly purchase a home chamber.
I spoke to my neurologist friend who had given him the treatments, and she said that he was one of 3 Parkinson's patients who had started treatment at the same time, and all 3 were doing well.
A great resource regarding mHBOT and neurological (& other) conditions is "The Oxygen Revolution" by Dr. Paul Harch, and also his website: hbot.com. Both include before and after SPECT scans which are remarkable..."
Update: I saw the volunteer (wife) again yesterday at work, and she and her husband are willing to do a video testimonial of their experience...
If they (and others I have videotaped) grant permission, I hope to post their videos on an educational website I'm working on...
I also think the fact that it takes many fewer mHBOT sessions to treat Parkinson's (and many other neurological conditions) than it does Lyme is a testament to the tenacity and complexity of Lyme disease...
Posted by soccermama (Member # 35101) on :
Has HBOT helped with insomnia?
Posted by spinning122 (Member # 42223) on :
Soccermama! What a coincidence! I just logged on to report my experience with improved sleep and mHBOT...
It took me a while to realize this, but mHBOT has improved my sleep so much! I go to bed at a decent hour, am not tossing and turning for hours, or waking up every two hours, or waking up way too early and not being able to go back to bed. The sleep is refreshing and I'm able to hop out of bed rather early in the morning. No dragging around, or "just ten more minutes pleasssse"
I am 55 hours in, btw. So overall improvements: PAIN gone or greatly diminished (bone, joint, muscle, nerve, headaches). Insomnia gone.
I also sometimes take a nap inside of the chamber during my 1-hr dive. It is most refreshing.
Phoiph, I am so happy to hear about more success stories. Thank you for sharing, and I can't wait for your website!
Posted by CD57 (Member # 11749) on :
This is really encouraging folks. Please keep posting!
Posted by Phoiph (Member # 41238) on :
About sleep...
Severe insomnia was one of my first symptoms, and one of the last to leave. It returned to normal gradually; in increments, over time with mHBOT.
I asked my friend, the neurologist/HBOT specialist about this recently...and she said that sleep architecture is very complex, requiring many areas of the brain to be in synch, so can be one of the later symptoms to resolve.
This can take time...but improvement of sleep is a very good sign...
Posted by Phoiph (Member # 41238) on :
Levity101...
"...Editing with a question, Phoiph, was the Canadian woman doing MHBOT alone or did she combine with abx or other treatment?..."
She had been off and on antibiotics over the years which had helped her temporarily...but this time around she was unable to take them, as they made her too ill (she said she "didn't think she was going to make it"). She was not on any other therapies when she began mHBOT 1-1/2 years ago, or throughout the subsequent daily mHBOT treatments.
Posted by CD57 (Member # 11749) on :
I have recently begun diving with the help of Phoiph. I don't have much to report because I am not very far in and have not made it up to an hour per day consistently (recommended).
My symptoms are highly neurological and cognitive/psych in nature.
I have been diagnosed with two strains of bartonella, Lyme, the usual elevated viruses, and possibly FL1953, parasites, and/or babesia (not sure about those three).
I don't seem to fit the usual mold here at LN in that I have done a lot of treatment with IV and oral, herbs, silver, ozone, and seem to have killed off a lot of Lyme but possibly unable to touch "bartonella".
It *feels* to me that somewhere along the way my immune system lost the ability to kill anything, possbly induced by the treatment itself? very scary.
The treatment for "bartonella" made my symptoms swarm and worsen, flare, but never improved.
Now I am stuck with the symptoms that emerged during the time. Sometimes it is really hard to keep going.
Abx for me don't seem to really kill anything but seem to prevent my worsening...although I get toxic after 4-5 days on them.
I am really hoping that this treatment will help reboot my immune system and come back online and do what it is supposed to do.
[ 04-27-2014, 11:35 PM: Message edited by: Robin123 ]
Posted by levity101 (Member # 1528) on :
It's so great to hear of progress being made. What an amazing story, Phoiph, about the man with Parkinson's.
It does seem that Lyme takes longer and I'm guessing it's because we're not only addressing neuro damage, which seems to respond remarkably, but that those with chronic Lyme need a 'reboot' of the immune system, as CD57 so aptly put it.
The immune modulating effects have been documented--changes in stem cells and white blood cells, etc. but it will take longer because the system is so taxed and possibly still fighting active infection, which has to be dealt with as well.
...therefore, slow and steady...makes sense.
Posted by BBinme (Member # 34131) on :
jarjar, would you mind telling us what has gotten better since adding mhbot? Thanks Posted by Haley (Member # 22008) on :
Wow CD57, I'm so happy to hear that you are doing this. I have a good feeling about it.
I may experiment soon, but I'm doing other things right now. Hoping my ear problem will get better and then i will try it at a local place that has a chamber.
Please keep up posted.
Posted by jarjar (Member # 8847) on :
quote:Originally posted by BBinme: jarjar, would you mind telling us what has gotten better since adding mhbot? Thanks
Mental clarity and energy/stamina.....two of my worst symptoms.
Posted by CD57 (Member # 11749) on :
Jarjar, what were/are your diagnoses?
Posted by jarjar (Member # 8847) on :
CD57 the usual lyme and co-infections..bart, babs and mycoplasma. With my MOPA I was hitting several other infections also.
I should add my symptoms are better but I'm only a little over 34 dives or so. I still have a ways to go. I'm more interested in where I will be in 2 or 3 months from now. Then I will be interested when I have 6 months invested in the treatment.
[ 04-09-2014, 06:19 PM: Message edited by: jarjar ]
Posted by CD57 (Member # 11749) on :
Glad to hear it jarjar. I have fear about growing the bartonella that Phoiph has been helping talk me out of. I'm glad to see others w this infection posting and doing mHBOT.
The bartonella specialist I used to see had a chamber in his office and thought that the physiology of Bart was such that it would be "resistant" to hbot, probably since it is aerobic. But he did not say that it would make it grow. So I am holding on to this and going for it.
Posted by Phoiph (Member # 41238) on :
At the risk of sounding like a broken record...
Bartonella and Babesia are usually not an issue for people who have intact immune systems.
With mHBOT, although it has antimicrobial properties, it is more about strengthening the immune system so it can do its job, rather than just "chasing bugs". It also has the advantage of treating multiple issues in the body simultaneously.
These are just a few of the reasons why mHBOT is effective for so many different conditions...
Posted by CD57 (Member # 11749) on :
Phoiph never will you sound like a broken record.....
any idea what mHBOT does against viruses, do we know? My viral titers came back extremely high and LLMD wants to address...
Posted by oxygenbabe (Member # 5831) on :
I think it's unwarranted to say most people with intact immune systems don't have a problem with bartonella or babesia. The latter can cause serious problems in healthy people all on its own, including needing hospitalization. The former has a lot of veterinary research indicating it's a significant pathogen, and under-recognized for its morbidity.
I do think worrying about mild hbot stimulating babesia or bartonella is probably unwarranted though. It's not enough oxygen to do more than change the terrain in most cases.
With more significant treatment (deeper dives, and/or a clinic chamber with 100% oxygen at a high flow rate) you may indeed upset the balance of organisms and get a rebound effect when you stop, because you will have allowed the growth of organisms not vulnerable to oxygen.
[ 04-27-2014, 11:36 PM: Message edited by: Robin123 ]
Posted by Toni L (Member # 42785) on :
My daughter completed her 43rd dive and so far no changes that she notices. She still has insomnia, headaches, brain fog, fatigue and a host of other symptoms.
We're in it for the the long haul so we'll see what the future brings.
She is currently diving 5 days on and 2 days off. After May 8th when she moves back home she will be in the chamber every day.
Someone from Oxyhealth said she should go in the chamber 2 times a day with a minimum of 4 hours in between. He was not specifically speaking about Lyme just in general. Has anyone done that?
Posted by Phoiph (Member # 41238) on :
Here are some quotes from a few research articles that support my statement that "Bartonella and Babesia are usually not an issue for people with intact immune systems."
Regarding Babesia:
"...The babesias are one of the most ubiquitous and widespread blood parasites in the world based on numbers and distribution of species in animals..."
"...Most cases of B. microti infection are mild and usually resolve on their own, without treatment..."
"...The most severe infections occur predominantly in the elderly and in splenectomized or immunocompromised hosts..."
"...Additional factors determining the severity of babesiosis are asplenia and coinfection with other infectious agents..."
"...Coinfection with other tick-transmitted infectious agents can result in more severe manifestations (108). This could be due to an overall immunosuppressive effect that facilitates establishment of infection, or perhaps there is a more specific synergy between organisms that occupy the same transmission cycle..."
"...the Bartonella genus, one of the most common types of bacteria in the world..."
"...infections are usually self-limiting..."
"...The nature and severity of the clinical presentation correlates well with the status of the hosts' immune system. Individuals with impaired immune function, including HIV infection, progress to systemic infections more often. The reduced ability of the hosts immune response to control bacterial infection apparently results in a bacteremia of longer duration..."
I also had high viral titers, including HHV6, Epstein-Barr, and more (which can become re-activated when the immune system is compromised).
These resolved with mHBOT (I never took anti-virals).
HBOT is also showing promise with HIV by penetrating the lipid coating of the virus...
Posted by Phoiph (Member # 41238) on :
ToniL...
I'm glad you are in it for the "long haul"...because, as you know, I didn't have any overt improvement after 43 dives...
I am not in favor of diving 2x per day...it is my opinion that it may upset the balance of free radical production (which is necessary to harm the pathogens), and antioxidant production by the body (that is necessary to protect our own cells from the free radicals).
As Dr. Harch states..."More is better is just an illusion..."
I am glad you reposted this article. I posted here some weeks back. I had mold exposure in past and apparently have the "gene" that does not detox well.
Spent $4500 from HSA for medical and $4600 out of pocket this year. This does not include bills that I have not paid. With the exception of the surgery I had, it was money wasted.
Trying to convince my husband that we could all benefit from a home chamber and that the cost would be worth it.
Really tired of throwing money away and not seeing any benefit.
Phoiph, please pm me what you think the monthly cost of everything for a small decent chamber.
Posted by oxygenbabe (Member # 5831) on :
Phoiph, I'm not going to do a battle of citations with you.
Here's a thread on page one of lymenet here, where the doctor himself talks about babesia being immunosuppressive and hard to shake:
One patient was treated for five years and couldn't shake it, finally crytopleptis and Byron White formulas made him feel better.
It's simply careless to make the assumption that bartonella and babesia don't have significant morbidity in some people.
Bartonella is truly under-estimated in human illness. As are ricketssia, if you do a literature review, and look at chronic rickettsial infections worldwide. There's no reason to assume they don't exist here, too.
Veternarians will treat rickettsias for 3-6 months...while humans are treated for a few weeks. Etc.
OTOH, mhbot imho shouldn't cause a significant increase in babesia or bartonella, but what do I know. I know in me, daily was a problem.
Something was stimulated (a bug, I thought yeast. Who knows). OTOH deep dive, did not have that same effect (stimulating a bug).
[ 04-27-2014, 11:36 PM: Message edited by: Robin123 ]
Posted by oxygenbabe (Member # 5831) on :
Also, nobody should accept at face value what another patient says, in terms of a therapy.
Take it all with a lot of grains of salt and skepticism.
And be under the care of a good LLMD who isn't overly fond of antibiotics or your money. Be followed while on any treatment, mainstream or alternative.
Posted by Phoiph (Member # 41238) on :
Oxygenbabe...
Lyme, Babesia and Bartonella almost killed me. I am not disputing that they are "immunosuppressive and hard to shake". If you read carefully, I never made a "careless assumption" by saying they "don't have significant morbidity in some people". Of course they do.
I was pointing out that in MOST people with healthy immune systems, the infections (Babesia and Bartonella) can be mild and even asymptomatic. (For example, I have read that people can be carriers of Babesia and not be aware of it, and this is one of the ways it gets into the donor blood supply.)
I was not referring to people who likely have immune dysfunction, including those with Lyme or other pre-existing conditions or cofactors, nor do I doubt your statement that these infections may be underreported.
The point of my original post was to suggest the possibility that if/when the immune system becomes healthy and balanced again (in my case with mHBOT), then the immune system may be capable of dealing with these coinfections.
You called my statement "unwarranted", and I provided references.
[ 04-16-2014, 08:44 PM: Message edited by: Phoiph ]
Posted by CD57 (Member # 11749) on :
Up. Any updates?
Posted by janej (Member # 43272) on :
Hi im writing an update on my daughter. It has been 7 months since we bought the chamber.
The first month was brutal. The pain increased and it was hard. She wanted to tough it out so she kept going.
The changes over time have been very positive. When shes in the chamber her pain is usually gone and her energy increases. She gets out in a good mood due to feeling better.
In the beginning of the treatments her pain has become extreme at times requiring morphine.Now her pain is 70 percent better. It has been two steps forwarded 1-4 back but now her recovery has started to look better.
Her memory is still somewhat impaired and she has fatigue but is much better overall. We can laugh together and have long conversations. We all have hope. ♡
[ 04-27-2014, 11:38 PM: Message edited by: Robin123 ]
Posted by CD57 (Member # 11749) on :
That is wonderful Jane! Please keep Us updated.
Posted by oxygenbabe (Member # 5831) on :
Phoiph, lyme can also be asymptomatic. Many test positive to borrelia all over the world and feel well.
It's simply not the case that lyme is the bad infection and the rest of them are usually not problematic.
Often the others, particularly babesia, are extremely problematic. There are people who don't get well until they aggressively treat babesia--and people who treat it and relapse--or who need to be on constant treatment.
There are people I know who have been able to get rid of all their other tickborne infections but are still treating babesia.
And though hyperbaric oxygen is a potent adjunctive treatment, emphasis on it as potentially curative is, in my opinion, mostly overselling it.
Helpful yes. A monotherapy, especially when at mild pressures (1.25 ata), that treats all the tbi?
I don't know *what* you had. Without documentation, they are simply anonymous anecdotes--ones that should be followed up on with one's doctor and independent research.
** edited to remove argumentative comments towards another board member **
[ 04-28-2014, 10:21 AM: Message edited by: sixgoofykids ]
Posted by Robin123 (Member # 9197) on :
Please, everyone, remember to break up your posts into a couple lines so everyone can read them - I just broke up lots of posts here.
Also, seems to me that everyone here can testify about treatments and discuss them. Best to bring the best info forward and let people do with it as they wish.
I don't think it's necessary for a big argument between Phoiph and Oxygenbabe here - point is, you can present info here for people to evaluate, but please stop the personal attacks. Terms and Conditions for use of the board ask for no harassment of one another.
If anyone has questions or concerns about this, you can report a post to the mods who evaluate postings according to Lymenet rules.
[ 04-28-2014, 09:25 AM: Message edited by: sixgoofykids ]
Posted by CD57 (Member # 11749) on :
Thanks Robin for posting this.
Phoiph, don't leave ok? You've started such a groundswell here. Such hard work! We need you!
** edited **
[ 04-28-2014, 03:59 PM: Message edited by: sixgoofykids ]
Posted by levity101 (Member # 1528) on :
Jane, thanks so much for posting your update. So glad that your daughter is continuing to improve with mHBOT! I can relate to the rocky beginning.
We're in a holding pattern right now due to some other medication related issues with my son's pain meds, but are still committed to continuing and will update when there is news.
Posted by Marnie (Member # 773) on :
How does HBOT help out?
"Second, the research showed the way that adding in extra oxygen helped.
This discovery had to do with the normal brain molecule, glutamate, mentioned earlier.
In stroke, this molecule is released in excess in the body's attempt to keep the brain working.
The problem is that extra glutamate acts like a poison to nerve cells and causes damage.
Adding more oxygen helps to convert the excess glutamate into much needed energy for the cells.
A special protective factor called "GOT" (glutamate oxaloacetate transaminase)
***facilitates the conversion of glutamate into fuel for the brain.***
GOT makes the system work even under conditions of lower oxygen so the brain doesn't release too much toxic glutamate and damage the nerve cells."
Cut and paste section of my reply under vagus nerve post.
Posted by yanivnaced (Member # 13212) on :
I have read through this thread and it looks interesting + promising.
Is mhbot approved for children under 3 years of age? I am thinking it might speed up the healing process for my son.
Posted by CD57 (Member # 11749) on :
hopefully Phoiph will stop by to weigh in on this. I do know that the man who helped me with my chamber was having young folks use it, including his very young son.
Posted by oxygenbabe (Member # 5831) on :
A qualified doctor should weigh in on a toddler using mhbot...and the toddler should be under that doctor's care and be followed and monitored closely. Especially since the neurological system is still developing at that age, and nobody has studied what repeated exposure to oxygen even at mild pressures, might do, on a longer term basis.
Posted by Phoiph (Member # 41238) on :
Hi yanivnaced...
My neurologist friend routinely treats young children and babies with mild hyperbaric, as does her colleague, Dr. Paul Harch (see "The Oxygen Revolution").
mHBOT has been successfully used with children with birth injuries, Cerebral Palsy, Autism, etc., and there are many research articles available.
There is a great network/website for parents, called "MUMS" (Mothers Unified in Moral Support) that discusses how mHBOT has helped their children with different conditions:
If you'd like to share what your son is recovering from and the area of the country you're in (PM is fine), I can ask my neuro friend if it is something potentially treatable with mHBOT, and if she recommends someone in your area for an evaluation for your son...
Posted by yanivnaced (Member # 13212) on :
hi Phoiph,
my son is currently treating his Lyme with abx for the past couple of months with no improvement yet. He got Lyme in utero during my wife's pregnancy.
His symptom is arthritic type pains in hands and feet. Hoping we can see some gains for him with the mhbot.
Any practitioner info would be appreciated. We are in the NY/CT area.
thanks!
Posted by Phoiph (Member # 41238) on :
yanivnaced...
I just PM'd you...
Posted by yanivnaced (Member # 13212) on :
pho - thanks for the PM. I tried to reply but your box is full.
Posted by springshowers (Member # 19863) on :
Phoiph. I tried to reply to your pm about cold laser and your mailbox was full. Are you looking into cold laser ?
Posted by Phoiph (Member # 41238) on :
Sorry...please try again!
springshowers...someone had asked me about cold laser, and I was going to point them to your thread, but it was gone...
Posted by soccermama (Member # 35101) on :
Up. How is it going with those who are diving? Please continue to post updates. I am still watching.
Posted by joahsark (Member # 20598) on :
Looking into and seriously considering getting a mhbot machine and concentrator into my home.
Nervous about my most severe symptom which is extremely severe brain swelling. It is mainly the reason I am purchasing. If it can help and even if I have to do it every day for the rest of my life it'll be worth it. I am currently on abx, both IV and oral with no real change in this symptom.
Hoping someone will weigh in on if it initially made it worse or had any effect at all.
Thank you all so much for this thread.
Posted by Phoiph (Member # 41238) on :
Hi joahsark...
I had brain inflammation/encephalopathy to the point that I was non-functional, and didn't think I would ever make it back, mentally or physically...
Here's a link where you can download a PDF (see icon at bottom of page) which illustrates before and after mHBOT SPECT scans of people with various brain conditions:
I have lots of info/resources I can share with you if you like, just let me know...
Posted by Looking4hope (Member # 43181) on :
Just a quick update for you guys and gals here. I continue to make progress, and I'm now back in the gym working out!
I'm gaining my weight back 'In A Good Way", gaining around 10lbs of quality muscle! Those who have known me for years say both my skin color and complexion look back to normal " I Would Have To Agree"(-:
I continue to dive without supplemental oxygen.....just utilizing the chamber and that's it. i do various breathing exercises while in the chamber and also watch movies on my Kindle Fire HD.
I'm still following for the most part a roughly 80% Paleo based diet. I drink 1 to 2 42.5 FL OZ of mineral water daily which I purchase at the $1.00 store.
I wake up much earlier these days and feel like I have both the energy and stamina to get things done like a "Normal Person" should.
With the aforementioned being said I still believe I can improve even more! This is most certainly a "Two Steps Forward One Step Backwards" process with the healing coming in "Waves".
I have found it beneficial to decompress in the chamber SLOWLY (IE) around 10 minutes....however I think this is the norm?
I feel like my mind is "Really Clear", and now would be a fantastic time to take the "Cognitive Tests", I had previously taken only months ago.
The amazing thing is I had completed only "Nine Dives", before taking the Cognitive tests yet still performed really well in certain categories. Without the "Nine Dives", I'm 100% positive the scores would have been radically different.
If any of you have any questions please feel free to PM me or just post on this forum. I encourage each and every one of you to "Keep Up The Hope", and pray you all find the answers you deserve!
Posted by JCarlhelp (Member # 15957) on :
I would be very careful about mineral water as some indication depletes bone calcium. Wife drank for years the has very serious osteoporosis.
Posted by Looking4hope (Member # 43181) on :
@Jcarl I was told to drink mineral water, however maybe I won't drink so much....sorry to hear about your wife.
On a sidenote I increased my training volume today in the gym by 50% and felt like I could have continued training! I trained for roughly one hour and did both allot of stretching, and self myofacial release in between sets.
My reasoning behind the self myofacial release is twofold. The first part consisting of me breaking up scar tissue which grew worse over the years the more sedintatary I became.
Last but not least the second benefit of self myofacial release is it help stimulate the GREAT lymphatic system.
Between the healing benefits associated with the chamber, and my continued use of "The Stick", which I use when doing self myofacial release I feel my recovery ability is greatly enhanced.
Posted by CD57 (Member # 11749) on :
Hope, what happens when you use the supplemental oxygen? Are you still getting herxes without it, or just improvement?
Your testimonial is interesting because not only does it go to show that mHBOT is effective but also that the supplemental oxygen may not even be necessary for some....just the pressure....
Your case really must be unusual. But congrats!
Posted by Looking4hope (Member # 43181) on :
Hey CD, I still herx if I overdo it (IE) I still can't tolerate 50 minutes everyday. So I do 50 minuts one day then 30 minutes the following day. I'm still not using O2...just relying on the chamber.
I really seem to get different results every time I dive! Sometimes it gives me allot of energy while other times it tires me out.
Posted by CD57 (Member # 11749) on :
I have had to break it down a bit, ie have not been able to jump right in with diving with supplemental oxygen for an hour. I have had some pretty intense flares of psych symptoms that were not tolerable. So weird! So I am doing just the o2 concentrator or just pressure in the chamber but not the combo.
[ 05-16-2014, 01:20 AM: Message edited by: CD57 ]
Posted by Toni L (Member # 42785) on :
With ambient air temps increasing the chamber becomes unbearably hot and my daughter can't stay in it. Any suggestions?
Posted by Phoiph (Member # 41238) on :
Toni L...
1. Make sure the oxygen concentrator and the compressor are separated by at least several feet; each generate heat, and that heat is sucked up by each machine and sent into the chamber.
2. Have a fan blowing near the oxygen concentrator and compressor to circulate the warm air away from them.
3. Take a block of "blue ice" inside a zip lock bag and wrapped in a thin towel inside the chamber and lay it on your chest.
4. Coolers are available for the chamber...they consist of a modified water cooler filled with ice, inside which the tubing that runs from the compressor to the chamber is coiled. As the air passes through the tubing (which is immersed in ice), it is cooled before entering the chamber.
These coolers are expensive for what they consist of, but you can also buy the parts and make your own...
We have purchased a window a.c. unit to supplement cooling, and hope to get it in today or tomorrow. We're in Florida, and the room with the chamber was added on to the house and doesn't get sufficient a.c.
Hoping that by cooling the room down substantially before sessions, that will do the trick.
Update--my son has been having some new health problems that have slowed down his mHBOT usage--gallbladder issues and possible infection. So, we're still in the early stages of figuring out what is going to work and getting up to speed.
Will let you all know how it goes.
Posted by Toni L (Member # 42785) on :
I could immerse the coiled tubing in an ice bath to cool the air going into the chamber. Anyone see a problem with that?
Posted by canadianmama (Member # 36298) on :
Toni, maybe sealed ice packs would be better then water baths around electrical equipment?
Posted by Phoiph (Member # 41238) on :
Toni L...
The issue with submersing the coiled tubing in ice water is that it will collect condensation inside the tubing...
The commercial coolers have a condensation trap to collect moisture, but even so, the cooler and tubing has to be dried out between uses, or mold could potentially form.
The tubing can be dried by blowing air though it with the compressor while it is not attached to the chamber. You could do this also, but it wouldn't prevent moisture from condensation gathering and being blown into the chamber during use, since you wouldn't have the condensation trap to catch it.
Posted by Phoiph (Member # 41238) on :
I just received this email update from the mother of the 22 year old who has been doing mHBOT for 9 months.
She has posted here before about her daughter...and will return to elaborate on her progress, but I wanted to share this in the interim:
"...Hi ******, I wanted you to know that ****** has been so good this whole week that we are both amazed. She said today that it felt like the Lyme is gone. Now we know this is probably not true but it's the best she has ever been. She is going out, swimming, running with friends, being active. She tries to be careful not to over do it but is doing well. ****** still takes naps and rests in between stuff like an older person but is doing so well. She came over this morning at 9 am to go to breakfast. We spent the whole day together shopping and watching a movie. She is now at a graduation ceremony. It's surreal for sure. I am taking her to Rocky Point with my sister and her kids on Tuesday for 4 nights. I'm so excited to have a real vacation with my daughter. It's like she is back. She doesn't have the manic episodes anymore either..."
In retrospect, I am very glad I did a video of her before she started mHBOT, because the difference is astounding...
Posted by JCarlhelp (Member # 15957) on :
Phoiph, was her protocol daily 1 hour dives with oxygen.
Posted by janej (Member # 43272) on :
Hi JCarlhelp, Im the mother that wrote the original email to Phoiph. My daughter uses the chamber everyday with oxygen mask and concentrator for one hour. We really started to think the chamber just helped with her inflammation, increased her immune system and made her feel well for a little bit but after 9 months she has been good for over a week now. We saw forward and backward movement with the first month with severe herxing over this time period. She asked me last night when we were exercising if this is what normal feels like. It made my heart sore. After 8+ years of being sick it certainly reinforced my choice to buy the chamber. We were desperate for so long.
Posted by janej (Member # 43272) on :
Hi JCarlhelp, Im the mother that wrote the original email to Phoiph. My daughter uses the chamber everyday with oxygen mask and concentrator for one hour. We really started to think the chamber just helped with her inflammation, increased her immune system and made her feel well for a little bit but after 9 months she has been good for over a week now. We saw forward and backward movement with the first month with severe herxing over this time period. She asked me last night when we were exercising if this is what normal feels like. It made my heart sore. After 8+ years of being sick it certainly reinforced my choice to buy the chamber. We were desperate for so long.
Posted by JCarlhelp (Member # 15957) on :
That is great news. We have had a chamber for quite some time but for various reasons are just beginning a true commitment.
Posted by Looking4hope (Member # 43181) on :
Janej, I'm so happy for your daughter....what an Amazing Story! I almost had tears in my eyes when you wrote "She asked me last night when we were exercising if this is what normal feels like"?
I continue to dive as well and have experienced similar to your daughter the "Forward And Backward Movement" of this modality. With that being said I would have to say for me personally it's been "80% Moving Forward And 20% Moving Backwards".
I plan on using my concentrator in conjunction with the chamber after revisiting some of the benefits associated with 02 and the chamber. For those of you who are to busy to read previous posts etc....I have been diving for "Three Months", without the use of the concentrator.
Today I plan on going for a run, which will test both my "Slow Twitch Muscle fibers", and Cardiovascular system. Based on my recent performance in the gym however (IE) I don't feel winded etc.
I still have a ways to go, however I would like to thank Phoiph for all her help throughout this whole process.....I wouldn't have moved forward with purchasing the chamber had it not been for Phoiph(-:.
In closing I experienced some mild nausea last week, however traced it back to "Too Many Stevia Based Drinks", in my diet. I also added Keifer every other day which seems to soothe my stomach and help replenish the good flora.
Many of my symptoms are better, however I still have pain especially in the morning. I also feel like my body is "Retracing It's Steps", as I experience symptoms that popped up over 3 to 4 years ago when I first started to feel "Unwell", at times.
My Neuro Symptoms are much better it's almost "Unbelivable"!
Posted by Looking4hope (Member # 43181) on :
Quick Update.....
The run was a horrible idea.....initially I felt great however last night I began to feel like I was coming down with the flu for the first time in three years!
My body ached like crazy, and of course I have a monster headache. I just completed a dive this morning and as I was decompressing my head started "Crackling", due to all the congestion.
I feel maybe the lack of Oxygen I experienced while running might have set my body into a full blow herx? I also broke out in a rash on my stomach.....it looks like something bit me four or five times!
I just feel like I have the flu, everything aches and overall I just feel crummy. I'm going to flush as much as possible today as the run probably also invoked a ton of toxins.
"Slow And Steady", should be by mantra, however I feel pressure to fully regain my health as fast as possible. Everyone is always asking me 'Are You Back To 100% Yet", you look great etc....Sigh)-
I'm doing the best job I possibly can, and I knew from the get go this wasn't some "Overnight Get Your Health Back Phenomenon". Well i just wanted to share this with you guys and gals in hopes that it may help some of you 'Slow Down" as well.
Posted by JCarlhelp (Member # 15957) on :
Looking4Hope, It sure is easy to do too much to fast especially after only (3) months. Hope you bounce back. I do the same thing, play intense tennis and then feel bad the next day. I think branched chained amino acids helps (BCAA) and I do think NT Factor Energy helps recovery. Unfortunately I have tennis elbow and shoulder right now so I am on hold.
Posted by Phoiph (Member # 41238) on :
Thanks for reinforcing that message, Looking4hope...
Unfortunately, there is no shortcut to true healing...it takes time and patience. The more you try to rush it, the longer it takes. The body knows what it needs to do.
I didn't start running again for well over a year (started with very short walk/runs), and then gave myself long breaks in between each run.
If I did a lot of something else that week (i.e., yard work, etc.), I skipped the run that week and let myself recover, even if I wanted to push it. I did yoga regularly, however.
Gradually, I could do more and more, and recover more quickly in between, until now back to baseline (albeit 10 years older than pre-Lyme)!
Posted by Looking4hope (Member # 43181) on :
Thanks guys and gals for your words.....much appreciated! I'm going to put running on hold Phoiph, and just stick to training with both weights, and stretching!
Jcarjhelp, I hope you can play tennis soon. I have an Uncle who plays tennis regularly and he has the same issue as you. I used to be heavily into BCAA's when bodybuilding....I too believe in the power of Amino Acids.
I remember what the flu feels like, and this does indeed feels like the flu. It doesn't feel "Limey", if that makes sense? I took a steaming hot shower, and scrubbed my skin with a brush which I do after each and every Mhbot session.
I try to open up my pores as much as possible in an attempt to drain the lymphatic system. I will also sometimes incorporate "Cold Water", for one minute following the use of hot water to help close the pores when done. I used to do this when I was really into the Sauna and it seemed to help slow down the Herx's at the time.
In closing this was a huge "Wake Up Call"! I knew I wasn't truly healing on a deep level this early in the game....i just knew it! The problem is convincing both family and friends of this when you appear to be seemingly healthy.
Moving forward... I'm going to both stay away from and ignore those who "Don't Get It". I have worked my tail off thus far, and unlike both work and competing there is no "Medal Or Trophy" on this road to recovery. Life is both short and precious and like many of you I I have already lost a great deal of time.
Posted by Pam08 (Member # 19203) on :
Any new updates from anyone doing this treatment? Just curious to see how people are doing.
Posted by joahsark (Member # 20598) on :
Would love to hear too!
Posted by S13 (Member # 42830) on :
Im in about 160hours now. Initially combined with antibiotics, but i gave those up 2 months a go. I havent made much progress by doing mhbot, but i havent regressed either when i went off abx. My primary symptoms are mostly neurologically (brain fog, concentration problems, memory loss, emotional instability, very zombie like feeling), nausea and some fatigue (but i can still do 5mile+ walks).
From what i can tell from my own microscopic research (live darkfield and giemsa staining) the mhbot seems to keep the borrelia infection at a very low level. The protozoan infection which really seems to like my brain is not at all affected by mhbot.
So after about 6 months of diving i can conclude; mhbot - good for suppressing borrelia infections - not so good for protozoan infections.
I have never herxed from mhbot, but that seems only logical since my lyme load has always been fairly low. Recently ive started a trial of albenza and got my first small herx ever! wohoo. So I will probably revert to treating my protozoan infection with regular medicin and continue the mhbot to keep the borrelia infection suppressed.
Posted by Phoiph (Member # 41238) on :
In terms of interpreting timeline...When comparing others progress to mine, I find it more accurate to begin counting sessions from the time the person stopped antibiotics (since I wasn't on antibiotics when I started mHBOT).
So, in this case, I consider that I had not made much progress in 2 months of mHBOT either...in fact I was considering quitting at that point.
With consistent treatments, eventually all infections, including protozoan, resolved...
It is remarkable that many people have been able to get off of their antibiotics with the support of mHBOT, however, there is much detox and repair to be done during and after antibiotics, and in my observation, this may ultimately require more time.
Posted by Looking4hope (Member # 43181) on :
Quick Update:
It turned out that I was suffering from both Bacterial pneumonia, and the shingles simultaneously!
As bad as things were... it wasn't nearly as bad as when my Lyme symptoms were at there worst!
Having both of the aforementioned at the same time was a setback)-: I'm now diving 4-5 days a week and have added "Oxygen", twice a week.
I can definitively state without reservation that I'm extremely tired after my dives when implementing "O2".
I do feel in my heart however that this is the direction I need to go in in order to continue the healing process.
As excited as I am in regard to the results I have received thus far.. I still have a long ways to go(-:
I'm going to list both my symptoms "Pre Mhbot", and "Post Mhbot" to date using a scale of "1-10". "1" will serve as no symptoms while "10" will serve as severe symptoms.
"Pre Mhbot" "Post Mhbot"
Nausea-10 Nausea-2 Fatigue-10 Fatigue-2 Enchapolopathy-10 Enchapolopathy-1 Anxiety-10 Anxiety-1 Pain-10 Pain-7 Muscle Twitches-10 Muscle Twitches-6 Hot/Cold-10 Hot/Cold-2 Low Body Temp-10 Low Body Temp-1 Nightmares-10 Nightmares-2 Flu Like Feeling-10 Flu Like Feeling-1 Headaches-10 Headaches-3 Car Sickness-10 Car Sickness-1 Auditory Issues-10 Auditory Issues-2 Light Sensitivity-10 Light Sensitivity-1
A the above illustrates I have made marked improvement in certain areas. I hope this gives some of you with no hope "Hope".
I often times wonder on this "Lonely Journey", how others here are doing? Rarely do I meet anyone who has Chronic Lyme Disease...one of the reasons this journey is so lonely at times.
Please don't get me wrong, I'm extremely thankful for this "Thread", and chiefly "Phoiph", for helping me get this far.
I still however can't help and think about the "Time Lost", due to this disease and unfortunately some of the relationships that fell by the wayside.
Posted by Phoiph (Member # 41238) on :
I can honestly say that no one could have been more furious about losing a decade of my life than I was! I thought there could be no redeeming value about the experience whatsoever, and that it was a ridiculous waste of a human life.
In hindsight, that perspective has changed completely. I now see how and why the experience had to be as it was, and realize that there was absolutely no time wasted...every moment that I spent in "hell" was absolutely necessary for the transformation that I have experienced.
There was wisdom beyond my comprehension in all of it (and if someone tried to point this out to me at the time, it would send me into a rabid fury), the extent of which I can only now begin to appreciate.
Posted by Looking4hope (Member # 43181) on :
I know you suffered a great deal Phoiph...10 years is almost impossible for me to fathom!
The vivid detail of your journey serves as a testimony to your incredibly resilient spirit!
Anyone who listens to your story will leave with an indelible footprint of truly how fragile and precious life is!
I'm trying to "Connect The Dots" so to speak in hindsight looking back as to why things happened the way they did?
While I continue to Grow, Heal, and Evolve as a human being I can now connect certain dots with a remarkably different perspective on life and what's important.
Posted by Phoiph (Member # 41238) on :
Thank you!
Posted by mbdq (Member # 26277) on :
I have reached 207 hours of chamber use. It is mostly continuous, since September. I am striving for 30 hours per month but had to take a week off this month due to gallbladder surgery.
Overall, I continue to improve and believe the hbot is helping. When I look back to a year ago, two years ago, etc I have less symptoms. I am currently not on Rx antibiotics but I have a comprehensive program in place to focus on regaining my health100%.
I am doing the m hbot with oxygen, using samento and monolaurin for additional microbial control and six weeks ago I took my diet to a new level and started the wahls paleo protocol. I have been "paleo" for about a year and always ate healthy but not as targeted as this.
I still have fatigue, migraines, burning pain, joint pain etc but they are not as bad as they used to be.
I feel my gallbladder issues were just collateral damage from years of lyme and all the antibiotics I took including IV Rocephin. The surgeon said it had scar tissue and aadhesions so I am glad its out.
I am also still having "windows" where I feel quite well and get excited that I am making headway. One of the hardest things right now is that I am comparing how I feel to those windows instead of how I used to be. This is an important insight and I must remember that healing will take time and overall I am showing improvements. Otherwise it is easy to second guess myself and question my progress.
So for now, I have a plan in place and I am working the plan. I am hopeful this will all continue in the right direction.
Posted by Survivorgirl1 (Member # 44031) on :
Hi, this is my first post. Just wanted to let you all know I am new I have just started on mhbot this week.
Thank you Phoiph and all others very much for your effort in sharing online about your experiences!
And my special thanks to S13 for his support and inspiring me to get this treatment in its most affordable option to Europe. I am sorry to hear about your neurological symptoms, your harsh battle on protozoa and that you are still waiting for much progress to come.
In short about me: In 2010 I was diagnosed with late stage Lyme disease. I have been ill since 1996, a teenager at that time. I was misdiagnosed with ME/CFS and because of that, shamelessly mistreated.
For the last 7 years I’m 85-90% bedbound and depending on in-home care-givers.
Previous to this severe worsening of symptoms I had a carbon monoxide poisoning (replaces oxygen on red blood cells) and toxic mold exposure from living in a wastewater damaged mold house.
This has also been the onset of reacting severely chemically / environmentally sensitive.
Not until just a few years ago, I was financially able to move out of the mold house into another home.
I empathize with Looking4hope and others describing the pain about the loss of time because life being too short and so precious, same here.
Years are passing by with keeping my weak body alive in this horror as it despite treatments feels like slowly fading away. And I can’t tolerate borrelia-antibiotics at this time.
I am desperately in need of a suitable multisystem supporting at-home effective self-treatment that’s slowly adjustable to tolerance. Almost all treatments so far make me feel more ill, like relentless herxing.
A year ago oxygen therapy got my attention as an additional treatment for the CO-poisoning and mold exposure. I didn’t know about oxygen and Lyme then. But I am learning on the way.
Because of the big expense I first spent months reading everything I could find about mhbot and hbot (as far as possible with my encephalopathy).
There is no doubt - I must try this!
Tired of composing this post and translating into english I not even got a chance to mention my 5 co-infections, my 100 symptoms, my FIR sauna and my juggling with meds, supps and herbs.
I am all settled, installed and ready for diving.
I will post my mhbot-experiences next time.
Posted by Phoiph (Member # 41238) on :
Hi Survivorgirl1
Welcome...please feel free to PM me anytime if I can be of help.
Just be sure to start slowly, and gradually work up to full pressure/02...
Posted by Looking4hope (Member # 43181) on :
To Survivorgirl1 "Congratulations" I wish you the very Best!
Posted by spinning122 (Member # 42223) on :
Welcome survivorgirl =) I look forward to hearing about your improvements with mhbot!
I am 137 dives in as of today (1 hr dives daily). I have been using the chamber in conjunction with antibiotics but feel it is time for me to stop the antibiotics... I really feel like the drugs have taken me as far as they can, so I will be discussing tapering off/discontinuing the meds with my doctor next week.
I suppose I have reached what they call "treatment fatigue", having been on antibiotics nonstop for 2.5 years now.
I have had Lyme for 23 years and I'm only 27... so I definitely know what you guys mean about wasted time being sick ;-).
As for improvements... I am now able to exercise for 40min-1hr daily which I couldn't do previously without feeling like I was run over by a truck for the next two weeks.
I am still fatigued and in bed quite a bit. Brain fog and anxiety/depression come and go.
For the past two weeks I had been experiencing extreme painful, red sore throat, swollen lymph nodes and puffy face/mouth pain. Just yesterday did it let up and I'm feeling back to "normal" now, just extremely tired, so I don't know what that episode was about.
But overall, I feel like I am making progress.
Posted by CD57 (Member # 11749) on :
Wow there are a lot of very ill people here posting now, making progress. I am delighted.
As Phoiph mentions please go slowly if you need to!
Amazed by looking for hopes progress in such a short time. And thanks to mbdq for her updates and welcome Survivorgirl!
Posted by Pam08 (Member # 19203) on :
I appreciate all of the updates! Glad to hear people are seeing some progress.
Posted by Marnie (Member # 773) on :
The above REALLY is important...re: mitochondrial dysfunction...which is WHY PQQ and perhaps MitoQ can work if someone can't afford HBOT...perhaps.
Posted by Haley (Member # 22008) on :
Does anyone know how the mhbot would effect a virus?
Any thoughts.
Posted by Phoiph (Member # 41238) on :
HBO has demonstrated anti-viral properties both through direct action, and secondary action by fortifying the immune system so it can better fight infection.
Here's an article regarding the effect of HBO on the HIV virus:
Thought it was time I give an update on my mhbot treatment. I started diving in early March and have no regrets whatsoever.
My body just functions better with the treatment and it complements using my rife machine along with it. I had knocked down a lot of infections with my rife machine (gb4000 plus MOPA) prior to mhbot but still had lingering cognitive issues and fatigue.
The mhbot treatments reduces those two symptoms. So I am very pleased with where I am considering the short period I have been diving.
Very happy with the anti inflammatory response of the diving also. My eyes are the whitest they have been in a long time.
I will add that recently I tried doing 2 separate one hour dives a day just to judge my response. I ended up having headache symptoms pop up afterwords. Not sure if it was a neuro herx or more oxidation then my brain needed. Either way I backed down to 1 hour dives for the time being.
Happy Diving you guys!
Posted by jarjar (Member # 8847) on :
Jcarl, your mail box is full. Yes, I used supplemental oxygen from day 1.
Posted by Survivorgirl1 (Member # 44031) on :
Thank you guys for posting and sharing updates.
My update, I’ve had my 5th dive. In the past weeks I’ve slowly increased from 5 to 20 minutes each. Once every 3 days. On 1.3 ATA with 9 L/m oxygen from the concentrator.
I react very sensitive nowadays, I think at this way I’m taking it slow… I appreciate Phoiph and others sharing the importance, considering my overall gained impatience with this illness.
In the days in between I do FIR sauna (low EMF saunabag) and Epsom salt bath from which I feel benefit. And sometimes just oxygen without hyperbaric pressure and also focus on some longterm supplements and herbs. This 3-day schedule currently seems to work for me.
Before I started diving I used just the oxygen-concentrator for about 5 weeks, once every 2 days. Increasing from 2L/min to 6L/min, from 10 build up to 45 minutes.
The first increasings of dosage on just oxygen caused some headaches and migraines. Later on it caused some small improvement of my bowel function (and thus benefit for detox, eating, stomach and digestion) and small improvement on the effectiveness of my supplements and herbs.
My first 3 ‘shots’ of mhbot were very good. Afterwards I feel calm and relaxed on a nice way, sometimes less nice on a very tired and sleepy way.
And I’m happy to say that the day after my dive, I seem to feel an improvement, a very small increase of overall strength and energy. Very very small but noticing it. Feeds my enthousiasm about this treatment. And again my supps and herbs seem to work a little bit better.
But then… the day after my 4th dive I got very ill. The trouble started just after my infrared sauna and some sunburn from being outside for about 30 minutes which I had not been since a very long while. This altogether must have been extra challenging my immune function?
I got very flulike ill, with seizures of trembling, feverish, near-fainting/ losing consciousness (I have this more often), headache (back of my head other pain than my usual migraines), earache,
eyepain, hip and knee pain (my problematic-lyme-joints), severe sweating, cold, exhaustion, decreased heartrate (42) (have it more often), a big increase of my (existing) heart arrhythmia and pvc, difficulty breathing / out of breath,
impossible to think and remember what I was thinking or saying some seconds ago (worse than normally), crying with no reason and fear of getting no help, and so on.
I thought it was about time to get help from my first time homemade liposomal glutathione . So I took a big swig… and in a few hours… I couldn’t function at all anymore! It made it worse!?!
I’m still ‘investigating’ to learn if it’s because of too much of detox from the big amount of glutathione in my depleted body, or I hope not babesia reacting on glutathione, or the combination of the desperate intake of liposomals which was only about 30 minutes after my intake of artemisinin and monolaurin (lauricidin), perhaps it emulsified the artemisinin in a way resulting in increased absorption thus herxing.
Well what ever it was, about 48 hours later I was feeling a big half better. And I was already looking forward to climb in for my 5th dive, so I did. And I felt nice and relaxed.
But when I woke up the next day I felt terrible again, felt like I was run over by a truck and in a tremendous amount of pain, feeling as if I had a severe increase of inflammation. In my knees, upperlegs, hips, high-back and neck.
Pain in joints, muscles and nerves, even touching my skin so painful. Some swelling also. Can’t hardly move, haven’t yet found a position to lie comfortably to stand the pain.
This is taking 48 hours now. I hope it’s of some kind of use and getting some of the bad and the ugly out of my body.
I thought hbot helps against inflammation… I’ve read so much about these treatments. But in the heat of the battle I know nothing and feel a bit helpless.
My brain to blurry to think straight what to do in this kind of situation, I took a quite random handful of potentially herx-supporting supps from my ‘in-home-pharmacy’ desperately in need for relieve. So far no luck.
If any of you has any suggestions how to get through this inflammatory pain… or this notorious lyme-herx-desperation…please post.
Survivorgirl1
Posted by Phoiph (Member # 41238) on :
Hi Survivorgirl1
It sounds like you have been careful working up slowly with your mHBOT...however, in my opinion, the other therapies are too much in combination.
This is a case of "too much too fast", and this is why I have concerns when sensitive people do several concurrent therapies, like FIR sauna and other detox methods, supplements, herbs, and drugs.
mHBOT is very powerful, and some of the many benefits are that it greatly enhances immune function and the detox process. Naturally, the body needs a chance to assimilate the treatment and rid itself of the toxins, etc.
In addition, if someone doesn't have fully functioning detox pathways (many of us do not), then this process may be less sufficient and take a little longer. In this case, "more" (therapies) is not necessarily "better" and can easily overwhelm the system (especially FIR sauna, which can dehydrate, deplete minerals and electrolytes even in a healthy person).
Drinking lots of water (with added minerals), rest, gentle exercise, eating a clean, gut/nerve healing diet, and simplifying the protocol (with your doctor's approval), while slowly (when your are up to it) increasing time in the chamber until you reach an hour at full pressure with supplemental 02 daily, is the best advice I can give, as this was the key to success for me...
[ 07-09-2014, 04:35 PM: Message edited by: Phoiph ]
Posted by Marnie (Member # 773) on :
HIV...a retroviral protein...
"enabling HIV-1 binding to the nicotinic receptor acetylcholine binding sites"
***They do this because the hydrogenase enzyme used in hydrogen oxidation is
inhibited by the presence of oxygen,***
but oxygen is still needed as a terminal electron acceptor.
Wiki.
Posted by jarjar (Member # 8847) on :
survivorgirl,
I have to be careful with how much sun I get especially in the summer. Your remarks about staying out of the sun for awhile but then staying out for 30 minutes and getting a sunburn would be hard on me even more so when I was more ill.
I find I do way better just getting short amount of sun everyday and stay protected with proper clothes,hats and sunscreen when I will be out for long periods.
Some patients can handle sun more so then others. Sounds like you are one that needs to be cautious of it. The Marshall Protocol explains all this if you ever want to google it.
I'm also very cautious about the temp and length of using my IFR sauna as it can aggravate my bart if I over do it. I never turn it up more then a medium temp and only use it 15 to 20 minutes.
Posted by Looking4hope (Member # 43181) on :
I too have "Sun Sensitivity" issues)-: I had my shirt off a couple weeks back while throwing batting practice to my son for a mere 20 minutes.
I was extremely sunburned the following day and then started peeling shortly afterwards)-:
I used to enjoy both "Sunbathing", and working out really hard. For now however I'm okay with not being tan and simply doing Yoga, stretching, flexing my muscles etc.
Like many of you I have come along ways! I try and show gratitude for the gifts bestowed upon me.
The mere fact that I'm able to write "This Post" right now and "Hold My Head up", is simply "Beautiful"!
The mere fact that I was "Out In The Sun", throwing batting practice to my amazing son is simply "Out Of This World"!
Posted by jarjar (Member # 8847) on :
Good for you Looking4hope throwing batting practice with your son. I know that feeling you were describing.
I use to consider myself an accurate football passer but when I let my arm muscles go downhill my passing game was embarrassing. I will never forget the day I got my muscles built back up some and was able to go out and throw long accurate passes to my son. It's little things like that are so important to share with your kids.
Speaking of building muscles I've been shopping around for a reclining bench press and barbells recently. Of course I will be using light weights but I know the fact that I'm shopping for them is because of increased stamina from mhbot.
Posted by Survivorgirl1 (Member # 44031) on :
I much appreciate your replies! I’m going to do a bit less and a bit slower on each element to not overwhelm and not damage my body.
And so increase the amount of days that I feel mhbot gives me the bit of physical strength and energy.
Besides the infections, the detoxification is definitely a big problem for me. In the past week I mobilized too much toxins at the same time, not quickly getting them out, contributing to horrible days.
Artemisinin and monolaurin are for me among the rare killers I do tolerate, so for now I stay on them concurrently. I feel lucky to notice a small benefit of both of them, resp. a bit less bowelpain and a bit more energy. I rotate and pulsate.
I’ve read about the Marshall protocol before, the problems about vitamine D metabolism, acting as a steroid, decreasing immune function, aggravating infections and lots of other problems. Correct me if I’m wrong, Jarjar.
I remember a previous time I had a flare when I did FIR sauna and being in the sun on the same day. So I’m slowing down on that too. And I don’t want to possibly ‘tickle’ my bartonella.
My FIR saunabag is less intense as a normal sauna cabin. It’s a kind of blanket with low EMF, far infrared, adjustable heat. My head stays out, it’s nice, warm and comfy to lie in.
I get out at 4 minutes, that’s often when my sweating begins. I replace minerals and trace-elements, also after my ‘ordinary’ sweat-attacks, incl. applying them on my skin after showering. I thank you for bringing the electrolytes up, all helps me to remember and focus.
Even very small positive effects make already a massive change in my daily survival and harsh symptoms.
Marnie, I take choline as an emergency medicine that helps me when I have seizures of temporary almost-paralysis or non-responding, to increase acetylcholine which i.e. borrelia neurotoxins shut down.
Would love to be able to lift up my acetylcholine with mhbot. Does this match your scientific posts? (hard for me understand on english and brainfogged)
Will update in a month or so…
Posted by Haley (Member # 22008) on :
Any updates on the people that are doing this?
Are you cured yet?!
I will be doing several sessions of mhbot and then will decide if I will buy one. Did my first one today
[ 07-26-2014, 04:29 PM: Message edited by: Haley ]
Posted by Looking4hope (Member # 43181) on :
Haley, When you refer to "Cured Yet", what exactly do you mean? I'm not sure if I will ever be "Cured", or have no lingering symptom's here and there....time will tell(-:
I know that many of my symptoms have either dissipated or are not as severe as they used to be. I do have severe pain typically in the morning, which I'm working on.
I look at it this way...a person with MS for example might always have MS however they might be able to live a better quality of life using a certain "Modality"
I think many like myself will have to learn to live in "Harmony", with the Lyme which took over their body for years.
Of course, like everyone else I would love to be "Totaly Cured", however that may not be possible for everyone.
Everyone also has different "Situations" (IE) children to take care, and other responsibilities. I do find it hard to dive "5 Days A Week", and usually do 3-4.
I always seem to have tons of energy after a dive without "O2", however roughly 12 hours later I start to experience "Mild Herxing", in the form of burning pain in my legs and upper body.
I haven't been great with my diet, and made a concerted effort today to simply "Live Out Of My Vitamix", for one week!
I believe we are all so different, and I know that you are hurting in the form of severe "Brain Fog".
Only you will have the "Key", to finding out how many dives it's going to take you and (IE) frequency, with "O2", without "O2", duration in chamber....30 minutes, 1 hour, 1.5 hours?
Haley, I wish you the best and hope that you continue on this journey and don't give up! It make take you some time. Look no further then Phoiph, while she was pioneering this whole expedition!
Phioph, showed no sign of recovery for over two months! She was ready to send the chamber back, yet she trusted her GUT and the guidance of a few close to her and persevered.
I can't imagine what I would have done without Phoiph! Can you imagine "Phoiph didn't have a Phoiph" to lean on...she only had her strong intestinal fortitude which in my opinion is "Beyond The Scope Of This Post"
Posted by Phoiph (Member # 41238) on :
Thank you, Looking4hope...but I really can't take that much credit...I was simply down to no other options.
I only wish I had found mHBOT sooner rather than later, but in that case I might have not realized the full extent of its healing power.
Everything happens for a reason...
Posted by Looking4hope (Member # 43181) on :
Phoiph....I agree I too had now more options. I had all but given up after unsuccessfully trying a myriad of different modalities!
My "Back Was To The Bed", instead of the to the wall at this point and I remember Phoiph you telling me "You Will Get Better".
My Stepfather who didn't really understand what I was doing at the time, now says "It's Like The Chamber Is A Cocoon For You", and you come out of Cocoon a different person(-:
Posted by Haley (Member # 22008) on :
Thanks for posting Looking4hope.
I'm sort of kidding when I say "are you cured?", but sort of not kidding also
Of course, we all would like to be "cured".
I did a dive on Wednesday, Thursday and Saturday. I'm very fatigued; will see if I begin to bounce back on my days off. I do feel that it is doing something, but I'm still brain dead. I plan to do it every other day.
Coincidently (or not so coincidently), my hairdresser mentioned that she has a client that has a facility with HBOT chambers. They do mostly hard chambers and don't seem to think that the mild chambers are as good. I am going to call her and speak with her. It turns out she has/had Lyme disease along with 2 other family members. That is why she got into the business - fighting the war on Lyme. Somehow I sense oxygen in my future, I know it is part of the plan.
BTW - what PSI do people usually do? I'll also look through the posts for information.
keep breathing oxygen Posted by Phoiph (Member # 41238) on :
Haley...
There is controversy over high vs. mild pressures...sort of like the polarized camps in Lyme world.
I would suggest reading "The Oxygen Revolution" by Dr. Paul Harch, who has been researching HBO for over 20 years. He and a colleague of his (a neurologist/HBOT clinician who is also a friend of mine) use mild pressures (1.5 ATA or less) for most neurological conditions.
Home chambers only reach 1.3 ATA as per FDA regs. I became well using a home chamber only (no clinical treatments) with supplemental O2...1 hour daily with total commitment to consistency, which I believe is key...along with nutrition protocol (very important) and gradually increasing activity/exercise...
Posted by Haley (Member # 22008) on :
Thanks for the article Phoiph. I don't know if this information is applicable to bacteria. I have downloaded his book onto my kindle and will read more, although probably won't retain a thing.
Have you heard of S.O.D. (Superoxide Dismutase)? It's an antioxidant, this was recommended to me by a doctor. I took it while I was using an oxygen concentrator.
My diet is good, the exercise will take a while.
Thank you so much for taking the time to help us.
By the way, you are an excellent writer, you should write a book.
Posted by Phoiph (Member # 41238) on :
Thanks, Haley...
About the book...maybe someday! Not sure who would want to read it though Right now I'm just trying to find the time to finish my website...!!!
S.O.D is an antioxidant which is also made by our bodies, and is made in greater supply when doing HBO to compensate for the extra free radical (oxidant) production to protect our own cells from damage (free radicals are also produced by our bodies and are a defense against infection, so are necessary as well...).
It is optimal to strike a balance between free radicals and antioxidants, as both are necessary...so you have to be careful with too much supplementation.
About whether lower pressures are effective against bacteria, here are my thoughts (which were posted on a different thread):
Many doctors and HBOT clinicians base their treatment protocols for Borrelia on a study in 1993 by Austin, which demonstrated that the lethal level of oxygen for a spirochete was somewhere between 30mm Hg and 160mm Hg.
They estimated that HBOT at 2.36ATA while breathing 100% O2 would raise the tissue 02 tissue levels to between 200mm Hg and 300mm...WELL above the range necessary to kill Borrelia.
This information was later used in a study with human subjects by Fife in 1998.
Unfortunately, the study didn't include research on what the lowest effective range was, and so this level continued to be used over time for treating Lyme disease, in spite of treatment failures and drop-out rates.
There are several problems and risks with higher pressures for Lyme disease and other neurological conditions. Some of these greater risk of oxygen toxicity, visual changes, and releasing of toxins more quickly than the body can handle.
In addition, the oxidation rate may become faster than the body's ability to generate antioxidants to compensate, causing oxidative stress. Of more concern is recent research the indicates the possibility of regression with some neurological diseases when higher pressures are used.
Another consideration is that Lyme disease is different than the infections that many clinicians are used to treating, considering its reproductive rate and ability to morph into protective forms, requiring, in my opinion, long term treatment to avoid relapse, which is cost prohibitive in a clinical setting for many people.
One of the biggest benefits that people who do short term treatment miss out on, in my opinion, is the healing process that is offered by long term mHBOT treatments. This is not just about "killing the bugs", but about bringing balance to the body and supplying it with what it requires to repair and restore itself to full health...
Posted by Leeintn (Member # 25999) on :
Hello Phoiph
When you get a chance could you PM and give me the details on the hbot ie rental and equipment needed.
I am having a difficult time deciding on doing treatments @ my docs office an hour away or having one in my home.
Thanks so much Posted by Phoiph (Member # 41238) on :
Leeintn...
Ok...just sent you a PM...
Posted by Looking4hope (Member # 43181) on :
I'm not sure what's going on, however I will do my best to explain..
My "Short Term Memory", has slowly been getting worse over the last week or so. Then "Mid Monday Afternoon", I noticed I was in a "Fog", while walking in the store.
I am without hesitation stating that my brain is indeed "Inflamed Right Now". Now the the trick is trying to figure out a remedy to reduce the inflammation, and what may have triggered this?
What's weird is I have been talking to someone on the phone frequently who always mentions how intact my "Long Term Memory Is"(-:
As I write this, my head feels "Full",... kind of like someone filled it up with Air.
I'm so scared right now, it's not even remotely funny.
The only other time during this Journey or starting Mhbot that I felt something very similar was when I had both Bacterial Pneumonia, and the shingles.
I did awake to two large bites on the back of my right foot coupled with a bite on my right arm last Sunday? I'm wondering if I may be experiencing the shingles again......or?
My nephew was out here from Virgina, and I slept in the same bed he did....what if I was infected again?
I'm diving with "O2", for 1 hour a day. I keep praying to God the "Lights", will come on once again(-:
It's this fullness in my head particularly on the side of my temples which is absolutely horrible)-:
I changed some things around in my diet which maybe added to this? I stopped drinking the magnitude of mineral water I was drinking prior to all of "This", happening, and deviated from my diet.
So here I am in front of all of you guys and gals here with a brain which feels like it's "Full Of Compressed Air".
I'm also having a difficult time staying focused etc. Leading up to this CRASH, I noticed I kept losing both my wallet and my cell phone.
I'm all over the place here, however I wanted this post to reflect as accurately as possible what's going on with me?
Phoiph, I know you had some setbacks however do you remember anything like this?
Posted by Phoiph (Member # 41238) on :
Hi Looking4hope...
You said you felt something similar when you had other illnesses, which suggests it is a reactive immune response.
What you're experiencing sounds to me like a "cytokine flare", possibly resulting from the toxins in the insect bites.
When I was recovering, my immune responses were very volatile...I had to be careful not to expose myself to too much, too soon, or my head would feel more pressurized, along with many other symptom flares.
I would get back on your anti-inflammatory gut/nerve diet right away, start drinking lots of water again...rest/don't overdo, and keep diving...I believe this symptom will resolve in time like it did after your bout with shingles and bacterial pneumonia...
Posted by Looking4hope (Member # 43181) on :
Phoiph, Thank You for your fast response "YOU ARE SIMPLY AMAZING"!
"This Time Around", I vow to do things even better (IE) Diet maybe 80% raw 20% cooked "Anti Inflammatory Foods Only When Possible(-:
Phoioh, you stated "What you're experiencing sounds to me like a "cytokine flare", possibly resulting from the toxins in the insect bites."
I agree with the aforementioned.....my body is fighting something "But What Exactly"? Only those who have LD truly know what "This", feels like)-:
Phoiph, I had a ton of energy leading up to this....then "Bam", after the bite my whole world got flipped upside down!
Last time as noted it started with the "Shingle Rash", and yes my brain felt like it was swollen for around five days, and I had lingering headaches for weeks afterwards)-:
I wish my family would just understand that I'm "Not Cured", and I still have allot of work to do.
I'm not "Superman", even though at times when I have energy I appear to be...just ask Haley(-:
Yes Phoiph, I agree "Rest", and not overdoing it are indeed important! I was told from the very beginning this was a "Two Step Forward One Step Backwards", process.
I myself still have a hard time with the "Step Backwards Thing"(-:
In closing so this may serve others in the future.....
I haven't been sleeping enough and have also been dealing with a multitude of "Stressful Situations".
Posted by Phoiph (Member # 41238) on :
Yes...it is very easy to slack on the protocol when you start to feel better, but discipline is key to getting all the way back.
It is usually not just one thing that sets you back...for example, you mentioned stress, diet, sleep, water, exposure to toxins...
The good news is you're still diving and have worked up to an hour a day w/02...that's an accomplishment!
You could consider this a "speed bump"...
Posted by Haley (Member # 22008) on :
Yes, looking4hope, I can attest to that. When I met you you had so much energy I was sure you had super powers. I believe my comment was - "if I could have 10% of your energy I'd be happy."
I hope the setback is brief and that the stressful situations resolve.
Posted by Looking4hope (Member # 43181) on :
Phoiph, I pray to god this is a "Speed Bump". When you experienced "Speed Bumps", did you get scared (IE) "This Feels Reminiscent", of how I used to feel?
Haley, I wish I had "Super Powers", again this is surely "No Bueno".
Phoiph, wss your "Brain Fog", or "Brain Swelling, so bad at times throughout this process that you thought "Here We Go Again"?
Your right on point when you use the word "Volatile". I feel like my immune system is extremely volatile and I have to be as close to perfect as humanly possible right now or I'm going to get even sicker.
Last night was a long night....lot's of tossing and turning, weird dreams, and I was and still am "Extremely Exhausted".
As stated above I had weird dreams all throughout the night, and had to wear ear plugs to drown out the noise which I had stopped doing for some time)-:
I don't know what to say other then my brain feels incredibly inflamed)-: My brain feels clogged and I can actually feel it crackling when I'm decompressing in the chamber.
I dove again this morning for one hour with "02", and unfortunately the "Tears Started To Run Down My Face")-:
I had come so far and was making by all accounts incredible progress!
Usually the pain I experience in the morning is really bad all throughout my body, however slowly subsides as the day goes on.
The last couple days however the pain in my body hasn't been as bad, and seems to have "Set Up Camp", or migrated to my brain?
I read the "Oxygen Revolution", over the last couple days once again however I'm having a difficult time remembering things.
In closing I don't what to say other then "I'm Really Scared". My entire Nervous System feels out of whack, and I''m having a difficult time keeping my eyes open.
Phoiph, what did you drink for energy when you were really tired? I can barely keep my eyes open?
Phoiph, any "Symptom Flares", you experienced etc would be of great comfort right now.
I did admiringly take on way to much, way to soon. I however have personal obligations which didn't allow me the "Rest", I knew I intuitively needed.
In closing it's like this "Thick Layer", of Gook feeling that is enveloping my brain right now. The "Gook", feels like it's not allowing my brain to fully "See The World", as it is)-:
Posted by Phoiph (Member # 41238) on :
I'm calling you...
Posted by spinning122 (Member # 42223) on :
Looking, I wanted you to know that you're not alone..I am experiencing pretty much everything as you described in your last post.
I am 178 dives in and continue to do daily 1 hr dives with oxygen. I discontinued antibiotics a couple weeks ago and am focusing on rebuilding my body now. Mhbot. Diet. Sleep. Gentle exercise.
Stress definitely throws my body off (both physical and mental/emotional). Lack of restful sleep also messes me up big time.
Lately, I have swollen lymph nodes, my throat feels tight, my brain feels swollen and I have severe brain fog, short term memory problems, problems following simple instructions., Exhaustion, sweating with minimal exertion, etc. Also.anxiety and clouded emotions. I feel empty and dead inside, no motivation or "zest" for life. But I know this is isn't the real me, so I won't dwell on it.
WI wish Lyme recovery could be a straight road of steady improvements but I guess we have to deal with the bumpy "one step forward two steps back" journey instead, and keep hoping that we are moving in the right direction in the meantime.
Thanks for sharing your experiences Looking. Nice to know I (and anyone else following the thread) am not alone in this journey.
Posted by joahsark (Member # 20598) on :
I so appreciate you all continuing to update and post on this thread. You offer so many of us hope.
Horrific brain problems were my first and continue to be my worst symptom. Intense pressure, complete inability to think, feels like my head has been injected with a large amount of some thick poison sludge that nothing can get through, brain zaps, pain and sickening vertigo are 24/7. Had made some progress on IV but right now feels like I'm back to the start.
Now pretty suddenly my legs have begun to stop working and walking is becoming very difficult.
I am traveling to a clinic to be sure I can "pressurize" adequately and then plan to get a machine in the house. On top of all that my 13 year old daughter is fighting this with her worst symptoms being gastrointestinal and brain.
Thank you all for being here, praying and wishing us all the same success as Phoiph!! And a huge "Thank you" to her for all the guidance.
Posted by mbdq (Member # 26277) on :
I know these flares are scary and they shake your confidence, but I think they are part of the process.
In my experience, they are either 1. Herxheimer reaction 2. Biofilm break down with immune system activation/herx 3. Immune system getting stronger and doing battle with other viruses/bugs etc 4. Flare of symptoms when body gets even further out of whack due to bad diet, lack of sleep, etc.
I have had flares of some of my worst and even new symptoms since starting mhbot, some really scary stuff. But overall it is helping. Its a long process, we wont get better overnight. We will still have times we will be very sick.
This is when we need extreme self care. Sleep, rest, diet, water.
Follow your intuition, get quiet, keep breathing in and out. This isnt for the faint of heart but we can get through this. Just keep going and take the best care of yourself you can.
After a really bad month I started combining the wahls protocol diet with the hbot. It significantly improved my energy. You need to give your body the proper nutrients to go with the oxygen therapy. I had always ate healthfully, but this is a whole new level.
Posted by Phoiph (Member # 41238) on :
I agree 100%, mdbq...
Posted by Looking4hope (Member # 43181) on :
Hey All- Thanks Phoiph, Spinning, and mbdq for your input(-: Joasark I know exactly what you mean in regard to the head pressure!
I can barely eat, yet everything is still going right through me. I have zero energy, my short term memory is shot, and I just feel plain old "Sick")-:
I dove again this morning for 1 hour with 02. The pressure in my head subsided for a bit last night, however came back today, with Gastro issues.
I feel extremely bloated even though I'm living on Mineral Water, and salad right now. My nausea is hitting me hard.
I haven't felt quite like this in months. However as I discussed with Phoiph there were a number of changes in regard to my (IE) Sleep, Nutrition, Stress, Water Intake, and other factors leading up to this.
I also intuitively feel like my body is fighting something, and I'm constantly "Thirsty".
Has everyone who is doing Mhbot here experienced these "Flares"? I used to get out of the chamber prior to this last week with Tons of energy "Usually"!
I could actually feel the chamber working on my body and I knew if I was feeling nauseated etc mhbot would help.
Right now when I dive I don't feel anything. I'm trying to comprehend all of this however it's "Terrifying"!
My head was so clogged yesterday, with an added headaches however late last night it was like all the pressure came out and I had energy?
As I write this, I feel worn out, sick, bloated, tired, and my head feels "Full".
Thank you all for your input it is much appreciated!
Posted by Phoiph (Member # 41238) on :
We also can't rule out that it could be another bug...there are many (especially intestinal) going around right now.
I know with me, as I recovered I started to get colds, flus, etc., which was a good sign that my immune system was beginning to have the vitality to take on "normal" things. However, at the time, it didn't feel like a "normal", pre-Lyme cold or flu, it felt highly intensified, and temporarily brought back symptoms that I thought I had already recovered from.
That was VERY scary, because I thought I may be relapsing, or at the very least losing ground...but it was just part of the process, and I actually made bigger strides forward after the "event".
It is often said that true healing is like "peeling an onion"...there are myriad layers that must be shed, and some of them are more difficult than others.
I have also heard that healing takes place in reverse order. I found that to be true; my most recent symptoms left first, but my worst and earliest symptoms (i.e., head pressure, brain fog, insomnia, etc.) were the last to leave...but they DID leave...
Posted by Looking4hope (Member # 43181) on :
Hey All- Thanks Phoiph, Spinning, and mbdq for your input(-: Joasark I know exactly what you mean in regard to the head pressure!
I can barely eat, yet everything is still going right through me. I have zero energy, my short term memory is shot, and I just feel plain old "Sick")-:
I dove again this morning for 1 hour with 02. The pressure in my head subsided for a bit last night, however came back today, with Gastro issues.
I feel extremely bloated even though I'm living on Mineral Water, and salad right now. My nausea is hitting me hard.
I haven't felt quite like this in months. However as I discussed with Phoiph there were a number of changes in regard to my (IE) Sleep, Nutrition, Stress, Water Intake, and other factors leading up to this.
I also intuitively feel like my body is fighting something, and I'm constantly "Thirsty".
Has everyone who is doing Mhbot here experienced these "Flares"? I used to get out of the chamber prior to this last week with Tons of energy "Usually"!
I could actually feel the chamber working on my body and I knew if I was feeling nauseated etc mhbot would help.
Right now when I dive I don't feel anything. I'm trying to comprehend all of this however it's "Terrifying"!
My head was so clogged yesterday, with an added headaches however late last night it was like all the pressure came out and I had energy?
As I write this, I feel worn out, sick, bloated, tired, and my head feels "Full".
Thank you all for your input it is much appreciated!
Posted by Looking4hope (Member # 43181) on :
Quick update To All My Friends Here(-: I feel like we are all in "Good Place", when we come to this thread for both "Hope", and "Inspiration"
After coming down with both the "Shingles And Bacterial Pneumonia", I had to increase one of my medications due to the extreme pain which wreaked havoc on every fiber in my body!
I tried cutting the medication to fast and paid the price dearly! I'm slowly tapering the medication and feel much better!
I'm currently drinking "Keifer Daily", along with both potatoes and adding rice tonight.
I feel like my stomach was getting extremely out of balance and needed an adjustment(-:
I'm also back to drinking a "Gallon Of Water Daily", and have made the commitment to Dive Five Days A Week With "02" from here on out!
Oddly enough my morning pain seems to be getting better throughout this whole ordeal(-:
My gut intuition tells me the chamber combined with 02, is wiping me out "Energy Wise".
With that being said however I feel like diving with 02 five times last week did something in regard to my usual morning pain(-:
I feel like my body is really oxygenated right now if that makes sense to any of you...LOL(-:
Thank you Phoiph for the abundance of time you give "Pro Bono", for everyone here!
The "Oxygen Revolution" is indeed a fabulous resource, however it only briefly touches on Lyme Disease and "Mhbot".
The "Real Life" experiences Phoiph went though keep me "Grinding" each and every day!
I hope you are all finding some Peace, love, warmth, and deep healing as we all continue to work at this together each and every day!
Posted by CD57 (Member # 11749) on :
Shingles and bacterial pneumonia are actually probably a good sign, horrible as that may be. This is a phenomenon that was described to me by a doc as what they see when someone's immune system is coming back online.
I don't get colds flus fevers, bugs ,etc, and I have kids. I will welcome some "other" stuff when it decides to show up.
Posted by Haley (Member # 22008) on :
CD57 are you using the chamber? Any results.
Posted by CD57 (Member # 11749) on :
I have not been using it regularly but am working w/ Phoiph to try to re-commit. I work full time and have to balance family life so don't have the time I need to myself to commit to getting well. It's been very difficult.
So there's my pity party for the day.
Posted by soccermama (Member # 35101) on :
I saw that Bryan Rosner has a chapter on mhbot in his new lyme book. Has anyone read it?
Posted by Haley (Member # 22008) on :
Hello all of you mHBOT enthusiasts.
I received my chamber a couple of days ago. I have not used it as I was trying to arrange a SPECT scan before I start. I had hoped that the before and after SPECT would be a part of my story, however in the mean time I'm declining rapidly and need to get some oxygen!
I will document my journey here, maybe check in every 30 days. I plan to do an hour a day with weekends off.
Wish me luck!!!
[ 08-28-2014, 04:20 PM: Message edited by: Haley ]
Posted by CD57 (Member # 11749) on :
Way to go Haley! We are committing right around the same time, so here's to you! Make sure to keep tea k of your symptoms and log them. Phoiph had me doing this, has been very helpful.
Posted by Haley (Member # 22008) on :
Yay CD57! I'm sooooo excited for both of us! I did one dive, but my doc sent off prescription for a SPECT scan, so I'll probably start diving next week after the scan. Will keep posting.
Phoiph is such an inspiration.
Posted by Survivorgirl1 (Member # 44031) on :
Haley welcome and good luck! We have now about 20 people diving in this thread! Start slowly and adjust according to your respons… I’m curious about the results of your upcoming spectscan.
Spinning122 and Joahsark, a very rough time…I hope you feel better now or very very soon.
Looking4Hope, glad to read you feel better again after your huge flare.
Mbdq, thanks very much for sharing.
Thanks Phoiph for sticking around sharing your knowledge and your own experience with mhbot to help others.
CD57, I wish you calm moments to ‘lie still breathing in and out’, between juggling with illness, work and family life… Can be hard to fit it in…
Soccermama, I haven’t read Rosner’s book, but it makes me curious.
Currently I dive early in the morning, for 30 minutes, once in 2 days. Sometimes I skip a day extra if I feel too ill, it’s still pretty intense.
On the ‘diving-day’ I skip most of morning-medication (incl. herbal anti-oxidants) and take it about 4 hours later. That seems my ‘recuperation’-time, after that I get a little boost of energy. Still figuring out what works best…
-Do you guys have any thoughts about keeping some time between diving (oxidating) and taking medication or supplements?
My LLND doesn’t know. I’m his first patient on mhbot…!
-Haley, did your doc who recommended you S.O.D. while you were on oxygen from a concentrator say something about a time in between?
I feel mhbot is very supportive to my body, from a deep level. It feels good I’ve started it.
I will update when I have more experience to tell about…
Wishing you all progress, also to the ‘quiet’ divers and diving families! (who are possibly reading along) I hope you feel support from diving.
Take care,
Survivorgirl1
Posted by Phoiph (Member # 41238) on :
Survivorgirl1
Thanks for the recap! I also am following many people who are doing mHBOT, but do not choose to be on Lymenet.
I have some thoughts on your questions, based on my own experience, and what I have observed with others who are doing well.
With people who are on a lot of medications and supplements, and have not become well over time with this protocol, mHBOT appears to be a 2 phase process.
Phase 1 consists of doing mHBOT daily, with the goal of supporting the body enough through mHBOT to gradually remove as many toxic influences as possible . This includes antimicrobials and most supplements (under doctor's supervision, of course). During this time, they are focusing on improving nutrition for rebuilding and repair of the gut, immune and nervous system. (Many people are initially tempted to try to move the process along with ancillary detox therapies; but many find that this may overwhelm the system and actually interfere with their mHBOT progress.)
Phase 2 is a continuation of regular, daily mHBOT, which supports rebuilding and repair, with a continual focus on nutrition and graded exercise.
It is a simple protocol, which is ironically difficult for many to follow, because they are so used to following complex routines. It is based on the fact that mHBOT itself is very powerful, and treats so many facets of chronic illness. One of the most important benefits besides detoxification at the cellular level is improvement of immune function so that the body can resume the upper hand against invaders, as it was designed to do.
Regarding when to take antimicrobials in relation to mHBOT sessions (for those who are still on them), it would make sense to take them as far away from your mHBOT dive as possible (but again, clear this with your doctor). The same "rule" applies to acupuncture sessions or homeopathy; practitioners often recommend that you allow these therapies to "do their thing" with as little interference as possible for a period of time after the session.
There is also evidence that HBO can potentiate some medications, and reduce the effectiveness of others, so that is something to keep in mind as well.
Although it is documented that HBO may potentiate antibiotics, this may be of more practical benefit with conditions such as chronic wounds, rather than chronic illness such as Lyme disease, where people's systems are already very toxic (my observation only).
In terms of the free radical action produced by HBO...free radicals are a necessary part of the picture, because they have negative impact on pathogens (they are also produced naturally by the body for antimicrobial purposes).
It has been shown that in response to HBO, the body creates additional antioxidants (e.g., SOD) to protect our own cells from damage. There is a balance here that must be struck...too much oxygen can cause "oxidative stress", and too many antioxidants (e.g., possibly supplemental SOD) may not allow the free radicals to do their work against pathogens.
"More is not necessarily better..."
[ 08-30-2014, 11:10 AM: Message edited by: Phoiph ]
Posted by joahsark (Member # 20598) on :
Thank you SurvivorGirl1 and Phoiph as always.
Trying to recover from a major very long flare, have been taken off IV and now starting (very slowly) an aggressive oral protocol to address Bart before going after the Bb since my most severe symptoms are from horrible brain involvement, although with this last flare very "MS" type symptoms came back, not able to walk, severe body wide pain etc.
As soon as I am stabilized I plan to get the machine in the house and begin. Following this thread closely and wishing you all the BEST!
Posted by Survivorgirl1 (Member # 44031) on :
Phoiph,
I’ve enjoyed reading your success story with just doing mhbot (along with diet and eventually graded exercise). Thanks for your thoughts about time between diving and medication, let it do its ‘thing’.
I see you’re worried about people can add (more) toxins with medication and supplements. And that you and a number of the people you follow, are proof that it is possible that just using mhbot (plus) can get someone symptom-free. Hope is alive…
I’m still balancing, I try to be carefull with toxins (or overwhelming) and at the same time I’m also not yet feeling enough confidence to rely completely on just mhbot. Some supplements support me to just get through the day. And I (and my doc) want to concurrently treat my co-infections, at least for now.
I’ve read your view about this, your immune system eventually could take care of things like that. Reading that gives me a calm feeling, that I have this stable foundation of mhbot supporting on so many different facets.
There are so much differences between how and to what extend people respond to treatment. I suppose these differences also exists with mhbot and maybe that can cause a need to individual adjustments and combinations. Sharing and reading different experiences all helps me to make choices in my journey to recovery, and to get inspiration and stay motivated. Thanks all!
Phoiph, or someone else, have you heard of people before, that feel changes (down and up) to every single treatment right from the beginning, or am I some kind of weirdo on that? Oxygen seems like a totally new thing to my body! I was thinking it might have something to do with my carbonmonoxide poisoning or my 92% of failing mitochondria slowly awakening...
Oh well if someone recognise something I say please do respond.
Wishing you all well! Joahsark, I hope you’ve killed a lot of it in your IV flare, hold on…
Survivorgirl1
Posted by Haley (Member # 22008) on :
Survivorgirl - I would reply to your question, but I don't completely understand it - maybe it's my encephalitis
You said "have you heard of people before, that feel changes (down and up) to every single treatment right from the beginning, or am I some kind of weirdo on that?"
Are you saying changes after every mHBOT treatment, such as herx like changes or healing changes, what type of changes?
I have only done 5 dives so I don't have much to report yet. Yesterday I had much more energy than usual, but today I'm in bed all day.
I am trying to decide if I should dive in the morning or the evening. What do most people do? I was going to do it early in the morning so I would be done for the day, but I find that I get hit with extreme fatigue, so I think I will do it in the evening before bed.
Next week I will experiment with adding exercise, just 5 minutes every other day. It doesn't sound like much, but it kicks my butt completely. I use a pilates DVD, I can choose a 5 minute workout or a 50 minute workout, it's difficult stuff. I will add an additional 5 minutes each week until I am up to 50 minutes or 1 hour. God willing!
Some changes that I notice already -
1. The color of my skin. My pasty whitish, yellowish appearance has become more tan or pink. This shows me that the blood is circulating.
2. Wounds healing quickly. I had an experience with a cut and a burn that healed very rapidly. This shows me the healing capacity on a cellular level at least in the skin.
3. Moments of lucidity in my mind. I have noticed this on a few occasions, usually when I have had a bit of a break from the oxygen and a good nights sleep. I'm still waiting for for my brain to switch on. Cognitive problems, fatigue and weakness are my worst symptoms.
Posted by Phoiph (Member # 41238) on :
Survivorgirl1...
You are right that I am concerned about adding more toxins into the mix, but also want to be totally clear that I am not advocating for people to go off of their medications unless they are under supervision of their doctor...
It is encouraging, however, to note that people have been able to get off of antimicrobials with the support of mHBOT...but it is a process that should be done with careful thought, planning and monitoring, of course...(just as you mentioned you plan to do)...
As far as early reactions to mHBOT...people differ in their reaction/sensitivity to oxygen, not only from each other, but from day to day.
Many times people experience an initial energy increase when starting mHBOT, and then a 2 step forward, 1 step back pattern. Other people (as in my case) feel very little changing for several weeks, then the pattern begins to emerge.
It will be interesting to hear what kinds of reactions you are noticing.
Haley...those are great observations...and, in my opinion, very positive signs. You have just started, though, so please be very careful not to overdo the exercise Just gentle movement is good enough right now to improve circulation and move lymph...you want to avoid having to "recover" from a workout at this point, as your body has a lot to do right now
Regarding the question as to the best time of day to do a session, that depends on your reaction. Some people find mHBOT stimulating, so shouldn't do it before bed. Others can do it before bed, and it doesn't affect their sleep.
Posted by Survivorgirl1 (Member # 44031) on :
- Haley, sounds nice, your positive changes!
I recognize getting hit with extreme fatigue and also the improved circulation, I notice it in my upper legs.
My question was a bit unclear, but I think you got it. I mean any change, I feel both, sort of herxing and sort of healing. It’s a bit ‘shakening’ after every dive.
So your answer and update are very helpful to me! After a week or so my rollercoaster gets calmer, till I increase time and frequency a bit again…
Time of diving is just what feels most comfortable to you! I tried different times, ended up with diving in the morning.
- Phoiph, thanks, I'm happy with your reply, gives me reassurance and more understanding! Very encouraging…
I will work on an update in the upcoming week... Find me some brain to create descriptions… Posted by Haley (Member # 22008) on :
Phoiph - that is good advice about the exercise. I don't realize that the Oxygen is very powerful. My body needs to adjust to the oxygen and then I will do 5 minutes every other day, then incrementally work up to more.
I need to conserve my energy, I always forget that when I start to feel better.
I'm just so excited about mHBOT!
Posted by Survivorgirl1 (Member # 44031) on :
My update, hopefully contributing to more data on this treatment:
I’m at 30 dives now on 1.3 ATA with 9,5L/min. oxygen from the Intensity concentrator. I use a Summit to sea Shallow dive.
I’ve gone very slow because of my oversensitivity and herxing (or whatever) right away. I have been increasing time and frequency over the past 2-3 months up to 30 min. once every 2 days now, to eventually reach 1 hour daily. Before doing mhbot I did a month on just oxygen from the concentrator without using the chamber.
1. Straight after diving I feel tired and weakened or more flu-like for about 4 hours.
2. But about 6 hours after diving I feel (relatively) increased energy and strength from a deep level inside my body. Big smile!
3. The next day I’m feeling toxicated and tired again, along with a mild headache, brainfog or a feeling of totally neurocognitive crippled. Sometimes multivitamin helps a bit then.
4. I’ve had two massive flares at the beginning, possibly herx, and a few weeks ago I had another very big one.
5. My monthly women thing seems to have improved a bit, less cramps, less days.
6. I have had only just one migraine since the start. Normally I have lots, so that has improved.
7. My bowel-function has a little bit improved, my stomach has worsened.
8. I feel a bit more calm in my head and legs. And being in the chamber relaxes me.
9. My (probably co-infectional) drenching nightsweats had been less for a few short periods and now have worsened again... I'm adding C.S.A. Formula to the mix...
10. My knees seem more painful and swollen, and I have more pain in my neck and lowest back. Muscle and tissue are sometimes a bit less painful.
11. At the moment that I’m actually in the chamber my heartbeat is of the most strength and regularity I’ve ever felt in the past 7 years! (that's when my CO-poisoning was added to the mixture) Very promising.
12. Diet and my medication seem to work better since I’m on oxygen. Although, there are still only a few foods that I can eat without getting more nerve-pain, more heart- and breathing problems or more nausea.
13. It seems that I have more trouble handling tiring things around me lately. I.e. noises, light, and I’m having a hard time tolerating my at home caregivers around me, needing their help, but so overwhelming…
Well... overall I have some improvement. I feel cautious and confident... Views, ideas, insights, questions or guidance are always welcome.
Wishing you all patience, support, love and much progress along this harsh lyme-road!!
Also to the ones in this thread that haven't posted for a very long time and have 'open-endings'... I feel a little worried about you... Please feel invited (not obligated!) to write some personal words online (not necessarily in this thread) about your mhbot, if you feel like and have energy to do so...
Reading experiences all helps me to make choices in my journey to recovery. TNT, I'm going to pm you.
Byebye, Survivorgirl1
Posted by TNT (Member # 42349) on :
Survivorgirl1,
I got your PM, and will try to reply to it. If I don't reply right away, I am going through a flare right now, and trying to figure it out to get things stabilized.
I haven't read this thread in months, and I truly admire your courage and fight!
For the other divers:
I briefly scanned over page 7 and 8 of this thread the best I could right now (eyes feel like they are in a vice, and stiff neck), and some of people's symptoms stood out to me.
I cannot remember what symptoms went with whom, but some that were mentioned were "new-onset" symptoms while continuing mHBOT.
Things like lack of appetite, looser bowels even while eating good (and no ABX), lower back pain, panic attacks, GI issues, nausea, sweating upon minimal exertion....
These all could read like Brucella symptoms. Very easily! And the thing with brucella is it can produce "malaria-like" symptoms.
I am not trying to worry or discourage any one of you, that's for sure.
But I would at least look into Brucella and it's symptoms if you are experiencing a worsening while doing mHBOT. And discuss it with your LLMD.
I have some great links (please look at them all very thoroughly) on the brucellosis thread here:
It seems like I have more than 5 links somewhere, so I may bring that thread back up with some added links.
I wish you all continued courage and complete healing!!!
Posted by TNT (Member # 42349) on :
Hi, everyone.
The subject of SOD came up with Haley on page 7 of this thread (7-27-14).
And Phoiph has explained that mHBOT interferes with detoxification because it creates more free radicals that the body counters with increased production of SOD. I think I have that right.
She wondered (in the non-mild HBOT thread) if my genetic make-up was contributing to my lack of success with mHBOT. I guess she thinks it is possible that I was producing free radicals faster than my body could deal with, especially considering I was also on ABX.
So, I thought that I at least owed it to everyone here to explore the possibility that my genetic mutations were interfering with my ability to detox properly, thus making my condition worse with mHBOT.
So, I dug out my genetic profiles to verify my mutations.
It appears that most of my snps for detox are fine. A few have 1 mutation (heterozygous). So, they should not be causing much trouble.
But I do have a double mutation (homozygous) on NOS (D298E).
***It appears that I have been tested by two different labs for SOD II (A16V). One lab lists me as no mutation ("neither chromosome carries the genetic variation"), or (-/-).
And the other lab lists me as double mutation (+/+). So, I am not sure which one I am. All other snps between the two labs agree.
The SOD II snp affects the mitochondria.
Here is the commentary from the lab that shows I am (-/-) on SOD II:
"Superoxide dismutase is the primary anti-oxidant enzyme within the mitochondria of cells (where most of our energy is made). SOD2 converts reactive oxygen species into less reactive hydrogen peroxide.
The wild-type genotype (-/-) is associated with higher SOD II activity and a greater sensitivity to antioxidant status compared to the other genotypes.
The combination of higher SOD II activity and low antioxidant intake and/or excessive oxidative stress (e.g., smoking) may result in an accumulation of hydrogen peroxide and increased risk of cancers of the breast or prostate.
This genotype has also been associated with a higher risk of motor neuron disease. Risk of cancer may be reduced in individuals taking anti-oxidants.
Because the (-/-) genotype is particularly sensitive to antioxidant status, liberal consumption of dietary antioxidants in colorful vegetables and fruits is recommended.
Broad-spectrum anti-oxidant supplements may also be helpful, including agents that help to raise glutathione levels (e.g., vitamin C, N-acetylcysteine, milk thistle) and support glutathione peroxidase (selenium)."
Also found this:
Superoxide dismutase (SOD) is an antioxidant enzyme that converts reactive oxygen species into less reactive hydrogen peroxide (H2O2), which is then neutralized by catalase and GSH-peroxidase. SOD2 is located within cellular mitochondria and uses manganese as a cofactor.
The only other detox snp that would be causing me any trouble would be the GSTM1 (1p13.3). I have an "absent allele" on this one.
From my test results:
"Glutathione S-transferases (GST) are responsible for detoxifying certain products of oxidative stress and a variety of electrophilic xenobiotics and carcinogens such as solvents, herbicides, pesticides, polycyclic aromatic hydrocarbons, steroids, and heavy metals.
GSTM1 is located primarily in the liver, whereas GSTP1 is located primarily in the brain and lungs.
When there is no gene present on the GSTM1 chromosome it is called an "absent" allele.
This results in reduced capacity for hepatic detoxification and increased risk of various cancers, chemical sensitivity, coronary artery disease in smokers, atopic asthma, and deficits in lung function.
Risk appears REDUCED for colorectal- and head & neck cancer, but ONLY when cruciferous vegetable intake is high."
It also says, "Decreased glutathione conjugation capacity may increase toxic burden and increase oxidative stress."
It does appear that detox is an issue for me, but exactly how it would affect my ability to use mHBOT, I'm not sure.
So, if a genetic/mHBOT expert would like to weigh in on this, go right ahead. I am sorry that the SOD snp is confusing.
Posted by Phoiph (Member # 41238) on :
"And Phoiph has explained that mHBOT interferes with detoxification because it creates more free radicals that the body counters with increased production of SOD. I think I have that right."
"She wondered (in the non-mild HBOT thread) if my genetic make-up was contributing to my lack of success with mHBOT. I guess she thinks it is possible that I was producing free radicals faster than my body could deal with, especially considering I was also on ABX."
Just to clarify...(especially since we're mixing two threads here)...I did not mean to imply that mHBOT interferes with the detoxification process, on the contrary, it actually initiates/enhances a detoxification response at the cellular level.
In addition, oxygen produces free radicals (ROS), which are a double edged sword; a certain amount are necessary to disarm pathogens, and too many will damage our own cells. To protect our cells from damage, the body produces antioxidants like SOD and GSH (in greater amounts when exposed to mHBOT) to compensate. (Conversely, taking too many antioxidants in supplemental/IV form can theoretically thwart the ability of the free radicals to fight pathogens.)
So, in TNT's scenario (see the non-mild HBOT thread), my question/concern was that her situation may be more complex if there were other factors, including a significant detoxification defect present, and wanted to explore this possibility since I thought it might have contributed in part to her negative response to mHBOT.
I wondered about a possible predisposed inability to detoxify or produce specific antioxidants, combined with other factors, including:
1) The daily ingestion of toxins (e.g., antibiotics, supplements etc.), plus
2) Methylation supplementation; the dosing requirements of which may have changed with the addition of mHBOT (methylation dosing is a complex and variable "art" to begin with, that can cause severe symptoms similar to the ones mentioned when not dosed properly), and
3) That additional oxygen via mHBOT may have initiated a greater detox response (normally a good thing), which, in combination with the "perfect storm" above, may have released toxins into the body at a greater rate than they could be removed, causing build up and worsening of symptoms.
This is a just a possible consideration on my part, because I personally believe that symptom flares/worsening can't always be attributed to the growth or spread of pathogens themselves; and that there may be more to the picture if we look deeper.
I would like to be optimistic that more formal research on long term mHBOT is forthcoming, but the truth is that since oxygen is not patentable, there is not much impetus to throw money in this direction...which is why everyone's experience/contribution is so valuable and important to consider carefully...
Posted by Haley (Member # 22008) on :
Thanks for that explanation Phoiph. It's going to take a while before I comprehend the free radical / antioxidant balance, but I think I am starting to get it.
I would like to ask if anyone has this side effect of mHBOT... I can't catch a breath and feel like I can't breath in enough air, also have rapid heart beat. Not saying this is bad or good, just wondering if this is a side effect.
It reminds me of when I had internal bleeding (I lost about 1/3 of my blood), so of course my hemoglobin was very low, my heart was pounding trying to circulate the small bit of oxygen that was in my system.
I wondered if low hemoglobin and mHBOT may have this effect. I do have slightly low hemoglobin.
Anyway the point of this post is, I'm wondering if I should take a day off. Maybe I have too much oxygen in my system. I have done 10 days, will be day 11 today.
Posted by joahsark (Member # 20598) on :
Phoiph,
I'm thinking probably not but do you know of any research related to successful treated of C-Diff while treating Lyme and Bart? Just came down with my fist bout, now more than ever determined to get a machine in the house since options are getting even more limited.
Thanks!!
Penny
Posted by JCarlhelp (Member # 15957) on :
Prescription dificet
Posted by Phoiph (Member # 41238) on :
joahsark...
From K.K. Jain: Textbook of Hyperbaric Medicine
Pseudomembranous Colitis
Pseudomembranous colitis (induced by antimicrobial agents) is caused by a toxin-producing organism Clostridium difficile. The presence of the organisms and toxins upon assay is suggestive of the diagnosis that can be confirmed by proctoscopy and colonoscopy. Most of the cases of this disease are self-limiting. Vancomycin has produced symptomatic improvement in some cases. HBO therapy has been shown to be useful in the management of this disease, but further research is required.
Unfortunately, this reference doesn't indicate at what pressures HBO was found to be useful in managing the disease.
I would suspect, however, even if higher pressures were necessary to actually kill the pathogens, mHBOT would still be beneficial due to its immune enhancing effects.
I also know of someone who recovered from a particularly difficult case of c.diff with ozone treatments. I can connect you if you like...
Posted by Phoiph (Member # 41238) on :
In reference to Haley's post above...
The symptoms she described reportedly improved after drinking more water. She had been drinking less than usual, and may have become a little dehydrated.
It reminded me to emphasize the importance of being conscious of water intake and staying hydrated when doing mHBOT...
Posted by CD57 (Member # 11749) on :
up
Posted by Looking4hope (Member # 43181) on :
Hey Guys & Gals! Well, I'm still trying to figure out a way to peel the last layer of this Onion. The last layer of this onion is predominatly Pain. Sometimes the pain aches, and other times it burns like crazy.
I'm eating really clean, and have even cut way back on caffeine. I continue to drink a gallon of water each and every day? It is extremely bothersome at times, however I guess I should be greatful with the progress I have made to date:-)
Its extremely weird....ever since my bout of both the Shingles, and Bacterial Pneomonia my pain worsened. I'm aware of post Shingles pain etc....its just really frusterating.
I will continue to keep you guys, and gals updated
Posted by Haley (Member # 22008) on :
Thanks for posting looking4hope. I hope the pain gets better.
Would you say that your brain stuff is still gone?
I've only done this about 20 dives, some symptoms are better. My brain is still a pile of mush.
I may need to take some medicine if I want to keep my job. Trying to trust that the brain will clear, just seems to be getting worse. ugh
Posted by BBinme (Member # 34131) on :
Hello, i too decided to take " the plunge" so to speak. However its still fairly early to assess at this point if its helping. There are some things that have improved for sure but some of these pesky symptoms continue to return at time. Maybe it herxing..i think that it is.
I've been taking it very slow as well b/c i am also very sensitive to everything. Maybe its a methylation block. Anyway i have just completed dive #50. I am currently diving 3 times a week at 1.3 ata for 45 minutes with o2 at 10 litres the whole time. I am slowly increasing the length of dive and when i get up to one hour i will increase days.
Some of my symptoms that have improved are headaches, head pressure and fog, however for some reason these have been acting up again recently for some reason which discourage me. These have been one of my hardest symptoms to get rid of and i thought i had them licked
Fatigue has improved but sometimes my insomnia will flare up from. diving which can cause fatigue. Dizziness is gone. Tingling hands and feet have improved but still flares up at times. Pain has improved but still get worse at times..when i started diving i was having nerve pain off and on and joint pain which i have not had in a long time.
Stiffness in neck and back is still a lingering and annoying symptom for me that just doesnt go away. Im going to continue diving and hopefully get up to daily hourly dives someday soon...i just cannot rush it unfortunatly.
I also am curious about the detox effects of mhbot and taking of detox supplements as well...trying to make sense with my lymie brain. What about supplements to improve methylation? Is that too much detoxing combined? Does it interfere with the effects of mhbot? And what about other detox supps like glutathione, nac, alamax etc? Thanks Deane
Posted by Phoiph (Member # 41238) on :
Hi BBinme...
You're having some very positive changes, and that is great, but in my experience, 50 dives (at 3x per week) is very early in the process, and way too soon to evaluate symptoms that are still present.
It is a 2 step forward, 1 step back process, with symptoms waxing and waning before they finally disappear over time, in my experience.
The questions you asked about methylation supplementation are good ones and not easy to answer, as there are so many variables from person to person with methylation and detox issues, and no specific studies that I know of involving methylation and mHBOT.
That said, we do know that mHBOT makes the detoxification/methylation process more efficient, so my thoughts are that you have to be careful with adding on a lot of other concurrent detox protocols, as to not overwhelm the system.
Also remember that free radical activity (which naturally occurs in the body, but is increased by mHBOT), while potentially damaging to our cells in quantity, is also an important part of the process of fighting/disabling microbes, so you don't want to try to eliminate it altogether with antioxidants.
Fortunately, it has been found in studies of children with Autism that natural antioxidants also increased in response to mHBOT, so oxidative stress was not of concern.
There is also the impact of supplements on the gut to consider, as well as "muddying the waters" with multiple treatment variables.
I personally couldn't take any supplements at the time I started mHBOT (due to severe sensitivities, reactions, and gut issues), and became well without them.
People may react differently; unfortunately there is no clear cut answer that I know of...so, in my opinion, "balance and moderation" would be the thing to keep in mind.
By the way, regarding the LPM setting you're using on your concentrator...I believe you're using a Sequal concentrator, is that right? If so, be sure to set it at 10LPM before you pressurize the chamber, and not touch the setting again after pressurizing (the LPM will drop a little due to the backpressure of the chamber during use...this is normal). If you try to crank it up again to 10 after pressurizing, it will not function efficiently. (There is a different procedure for the AirSep concentrator...that one must be set below 10LPM...at around 8.5LPM, then left at that setting at all times when used with the chamber).
Posted by BBinme (Member # 34131) on :
Hi Phioph, I guess i was more curious about taking the vitamins( methylfolate, methylcobalimin and b6) used to help with methylation. Ive never been tested for methylation problems but i would not be surprised if it was positive b/c im so sensitive to everything. I think i understand the detox supplement issue with mhbot. I have stopped glutathione awhile ago. Im still taking nac and alamax but have cut back. I plan to stop both soon when i run out.
Yes im using a sequal concentrator. I turn that on to 10 before starting the pressurizing and then dont touch it again until i get out of chamber and i always shut the pressure off before the concentrator. Thanks
Posted by Phoiph (Member # 41238) on :
Coincidentally, the methylation subject came up today with a naturopath who's opinion I really trust.
In her experience, before considering methylation supplementation, you have to be careful to have all hormones/endocrine levels in balance first, otherwise it can easily offset that balance and potentially cause lots of issues and reactions.
It is a complex process that, although many people take it on themselves, should probably be initiated and monitored by someone that understands it thoroughly and can look at the whole picture...as I have known people who have been really helped by it, and others who have had very negative reactions and setbacks.
Good about the concentrator...just checking...:)
Posted by Haley (Member # 22008) on :
Hi Phoiph,
I am doing 1 hour everyday, almost at 30 dives. I am considering doing 45 minutes 2 times a day. Do you think that is too much? I notice my symptoms come back before 24 hours. I just wonder if it might be more effective, although I'm not sure how I will work it into my schedule.
I also thought about this after seeing this 48 second microscope clip from the microscope thread. This is a 13 hour time lapse, you can see how long the bug will stay in cyst form.
I think it is important to do the full 1 hour session (at full pressure, not counting inflating/deflating time) daily to get the most therapeutic benefit.
People differ in their tolerances to oxygen "dosing", and each individual can differ day to day. Since people with chronic illness tend to be very toxic and sensitive, it is best to be conservative, in my opinion. Oxygen is considered a "drug", after all.
The effects of a 1 hour session stay in the body for over 24 hours, and are cumulative, from what I understand (but it takes a certain number of sessions before the results stick). My personal opinion/experience is that more than 1 session a day (or sessions longer than 1 hour) are more than what is necessary for our purposes, and may be too much for sensitive people.
I know for me, the few times I have accidentally fallen asleep in the chamber for more than 1 hour, I felt as if I had overdone it. Same thing when I had tried to do more than 1 session per day early on in my treatment.
There are many other indications that require higher pressures or more time in the chamber (such as wound or bone infections, for example), and I have known people who have these conditions in combination with chronic Lyme who, unfortunately couldn't tolerate these protocols.
I can see why you thought about this after watching the clip...but consider that much of the force behind mHBOT is not just through direct antimicrobial action, but via healing/empowering the innate immune system overall so it can deal with the "bugs" more effectively...
Posted by BBinme (Member # 34131) on :
Thank Phioph. I am taking Metanx which does have the same things that people take for methylation blockage...not sure if metanx helps or not with methylation( i would think it doez), but my llmd put me on it for nerve issues, numbness and tingling etc. Ive been on it for awhile now with no reactions so i think i will stsy on it for now. Posted by Haley (Member # 22008) on :
Thank you for the reply Phoiph. I will stick at one hour a day. I usually have the concentrator on 10. I have not missed a day, tomorrow will be 30 days for me.
I posted that one link as I think it is interesting that the effects of the oxygen "wear off" around 14 hours. I do, however, feel a cumulative effect. My main symptoms are weakness, fatigue and severe brain problems.
I have definitely improved my overall strength, for example I am doing Pilates 3 times a week, but only 10 minute each time. In the past I would be completey exhausted for a week if I did one short work out, in fact getting out of bed was a challenge for me. I now feel stronger with each workout and actually look forward to these workouts. It's a big deal.
My brain is still a mess, but I have faith that this will get better as time goes on and if I need to take medicine for it I will.
I feel that the oxygen is knocking out anaerobic bacteria while simultaneously empowering the immune system.
I believe the reason Lyme is so complicated is that we all have different pathogens due to the fact that we are bitten by a different tick in a different geographic area. Also, one person may have 2 pathogens and another 100. MCIDS (as Dr. H puts it). Its as if each one of us has an entirely different illness. Drs can't test for everything under the sun and they are often guessing when hitting these things with medicine.
That's why Oxygen makes sense to me. It boils down to 2 different types of bugs - anaerobic and aerobic; the Oxygen will take down a lot of stuff. This is easier to grasp than trying to treat 50 different pathogens.
Carry on mHBOTers.
[ 10-07-2014, 10:59 PM: Message edited by: Haley ]
Posted by Looking4hope (Member # 43181) on :
Haley, So sorry for the late reply.....I have been through a great deal lately "Not Really LD Related"
I agree with everything Phoiph states above....I do believe in my heart eventually in TIME 'The Lights In Your Brain Will Come Back Online"(-:
Have you been following your diet, and a host of all the "Little Things".... with an emphasis placed strongly on the "Little Things"?
I like Phoiph believe that one should keep this "Process", as KISS or Keep It Simple Stupid as possible(-:
The only adjuncts I really ever added to Mhbot, were Earthing, Diet, Increasing Voltage in the body, and Exercise....and that has always pretty much been it.
Haley, the fact that your now able to exercise more frequently is a HUGE indication in my humble opinion that you are indeed headed in the right direction.
You have always intuitively felt like some form of Oxygen was going to get you to where you needed to be.....and the fact that your NOW training the way you are is nothing short of AMAZING at this stage of the game "Congratulations".
Mhbot, is a very slow process at times Haley. With that being said we are all as human beings living in one of the fastest paced civilizations in recorded history! That fact alone makes things that much more difficult!
I know it's hard as someone who has battled and is still battling right along side you Haley in the trenches each and every day.
In closing no one hear I believe is a doctor so we obviously can't give medical advice. What we can do is simply share "Our Personal Experiences", with this modality.
I'm greatly encouraged to hear about your success in regard to your exercise. Like you I have read a great deal about Mhbot, and other literature which interested me on the topic of TBD or Tick Born Diseases.
After "Adding Everything Up", I have my "Personal Opinions", as to why some heal, some don't, and other heal very slowly.
With that being said, I do believe Phoiph, who has unselfishly donated an abundance of her time and energy to helping others has illustrated "Personally", how powerful Mhbot can be for some.
I have always loved Phoiphs "Simple", straight forward approach as it coincides with much of the research I have done personally in regard to Mhbot.
Again sorry for the late reply Haley...I hope all is well(-:
Posted by CD57 (Member # 11749) on :
I thought I would chime in here with a conversation I had recently with someone amazing that Phoiph hooked me up with. This gentleman has a lot of personal experience diving and is a researcher as well. Not Lyme, but other health challenges.
When we talked the other day, he mentioned to me that as regards aerobic pathogens potentially "growing" or spreading (this came in in course of discussing tick borne infections) he said that even aerobic pathogens create an acidic, low oxygen environment in which to grow. It was sort of a light bulb moment for me (that takes a LOT, right Phoiph?) and I am not really afraid of that anymore. I was afraid of "growing" bart.
If people have bad reactions to the chamber (I did, jumped in too much too soon) it's probably not because aerobic pathogens are "growing". The chamber is a methylator and a detoxer, so I would think that it's more likely that something is going on in that regard.
Posted by Haley (Member # 22008) on :
Thanks Lookingforhope. I'm sure that my brain is getting better, there are subtle improvements.
Glad to hear that you still have maintained the cognitive improvements.
CD57- I was trying to elude to the fact, that even if (hypothetically) the chamber caused other bugs to thrive (which I don't think it does), the oxygen kills A LOT of bugs while it's boosting the immune system. This puts the body in a position to take down what it once was not able to take down. That's just my opinion.
I am extremely excited about this therapy, but I'm trying to refrain from saying anything and make sure the results are lasting. It's just so difficult to not say anything when I have had days where I actually felt alive!!!! It's been 7 years since I felt that way. The "good days" are sporadic and few, but wow are they good!!!
I do have to add that I am taking Erythromycin, this was prescribed by my doc for some bug that I have. So currently, I believe it is a combination of the antibiotics and the oxygen. I also use a PEMF mat one hour a day.
I know that Phoiph is not big on abx, so I hope that this doesn't disappoint her. After all, she may have saved my life; I will be forever indebted to her.
Posted by Phoiph (Member # 41238) on :
Thanks to everyone for the kind words...
Haley...I am "not big" on antibiotics only when they don't work or cause harm for people (like me)...but if they are working for you for whatever reason, of course you have to go with what you and your doctor feel is best for you...
I am very happy to hear about your positive responses (and I know that you are aware that there will likely be ups and downs to come...it can be a rocky road...). The "good" days will eventually outnumber the "bad" ones...:)
Of course you are not indebted to me!!! I am grateful to be well enough to get the message out to others...and as I have said before, it makes my 8 years in hell seem like it had a purpose.
Remember, someone did it for me...and you will do it for the next person...
Posted by BBinme (Member # 34131) on :
Phioph, you said earlier that in studies with autistic children they found that mhbot increased natural antioxidant activity. Do you have the link to that study? Would like to read it thanks Posted by Phoiph (Member # 41238) on :
BBinme:
Here are links to a few articles indicating that mHBOT raises glutathione (the master antioxidant):
How Mild Hyperbaric Oxygen Therapy Works and Why it is Good for Our Children, by Julie A. Buckley, MD, FAAP :
I just got back from urgent care. I now have an "Ulcer of the Pharynox or Hypopharnx" and "Dysuria".
My immune system just can't catch a break. I feel like I'm back in this "Tunnel", with no connection whatsoever with my surroundings etc)-:
I have no energy, feel physically sick, and was told by someone I know that "I Just Need To Simply Use My Survival Skills"
I worked so hard to get to where I was...this is all just seems like a bad dream right now. My head feels so full, my legs feel week, I have bouts of intense nausea, hot cold, sweating, frequent urination, dehydrated.
I wish none of this was true....however unfortunately it is)-:
Posted by BBinme (Member # 34131) on :
Thank you Posted by Phoiph (Member # 41238) on :
Great article by an MD (with her own health challenges) who ran a hyperbaric practice and continues to use supplemental oxygen as a therapy with her patients:
The Most Overlooked, Effective, Prescription Drug, by Dr. Jamie Deckoff-Jones:
I think this doc also had Lyme!
Posted by Phoiph (Member # 41238) on :
Yes...there is a link in the article to her blog.
Posted by mbdq (Member # 26277) on :
Hello fellow HBOTers!
It's time for an update on my journey. I have reached 288 hours of mild HBOT. I still feel it is a very helpful modality to treat lyme, support the immune system, detox, etc.
In July and August, I felt I was stalled out with the HBOT, like my body was adapted to it and instead of getting little steps forward, I was just treading water. I went back to my LLMD and he suggested I go back on abx (I had been off them since Nov 2013) to move forward and really try to kick this.
I didn't feel completely comfortable going back on abx, so I went for a second opinion with an Integrative Medicine practice that a friend recommended. With that practice, I was able to get a lot of new blood work done, including tests with the BCA clinic in Germany. At that lab, they do a T-cell test that is better to determine active infection and has a very high sensitivity. It also tests for 5-6 strains of Borrelia versus typical western blot that tests for 1 or Igenex that tests for 2.
My results came back that I have not 1, not 2, but 3 strains of Borrelia plus Ehrlichia/Anaplasma and very high Epstein-Barr titers. My Epstein-Barr has always been high, but this is the first time I tested positive for Anaplasma. Now, this might seem like bad news (and having 3 strains of lyme certainly is!) but I also recognize that the test said that my t-cells (needed to fight lyme infection) were reactive to the lyme antigens. This to me is a good sign. It means my immune system recognizes Lyme and wants to take care of it.
So, this new practice convinced me that I really need to be treating more than just with HBOT (especially with 3 active strains)and suggested some simple treatment with doxy and malarone. I am also loaded up with multiple types of probiotics.
I've been doing the abx/hbot combo for 3 weeks now and I've really been herxing this past week (During week 2 I couldn't do HBOT due to travel). With this herxing, at least I feel I am not stuck and something is "happening" and I am hoping for an uplifting of the herxing stuff soon. The good thing is the herxing is not too bad. Certainly not as strong as when I started HBOT over a year ago. It also seems to be coming in waves that then the worst passes in a few hours, especially after I do the chamber. This is better than my old pattern which was just herxing forever with little noticeable improvement.
My husband also has Lyme, is on antibiotic therapy and has recently been using the chamber as well. It makes him herx pretty hard, and then he feels better in 2-3 days. He is using it as a supplement to his treatment to make the antibiotics more effective and detox. He thinks it's very helpful.
So that's the update for now! I will let you know how things progress for both of us.
Take care.
Posted by CD57 (Member # 11749) on :
Wow, MBDQ thanks for the update. How interesting!
Posted by CD57 (Member # 11749) on :
I am super interested in these tests. Do you know how I would get more info?
Posted by Haley (Member # 22008) on :
Thank you mbdq.
I'm also am interested in those tests.
Are you doing supplemental oxygen? I notice that this really helps a lot when I suck down the extra oxygen.
I agree that a low dose of medicine along with the oxygen seem to work well (for me anyway). I am concerned about yeast.
What do you take for probiotics? How many billion units? I have increased my probiotics to 200,000 billion and 5 billion sacromyces boulardi.
[ 10-21-2014, 10:07 PM: Message edited by: Haley ]
Posted by Haley (Member # 22008) on :
Does anyone here get clogged ears that don't unclog? What do you do to remedy that?
I have tried Afrin, Nettie pot, all sorts of things for sinus.
Any suggestions would be helpful.
Posted by JCarlhelp (Member # 15957) on :
Have you tried earplanes
Posted by mbdq (Member # 26277) on :
Haley- I have really sensitive ears that don't always clear very well. At times they have gotten clogged. The best thing that helped me was hot showers/steam.
Also the Neti Pot, but the hot shower was better, I think because I was standing up and they could drain.
Also, to help my ears clear in the chamber it is much easier for me if I pressurize while laying on my stomach in the chamber, with my upper body propped up on my elbows in a modified "cobra" position.
It seems to stretch my eustacian tubes and help them clear more easily. After reaching full pressure, I flop over very ungracefully.
For the inquiries about the probiotics, here is what I am taking:
1) VSL #3- 112.5 Billion CFU/cap. 2 per day
2) Enterogenic Intensive 100, Mfg by Integrative Therapeutics- 100 Billion CFU/cap. 1 per day
3) Saccharomyces boulardii, Mfg by OrthoMolecular Products- 5 Billion CFU/cap. 2 per day
4)OrthoBiotic, Mfg by OrthoMolecular Products- 20 Billion CFU/cap. 2 per day
Also, for those of you going through the first couple of months of HBOT and are having huge scary flares and other things going on, I remember what this was like. It's very scary.
I herxed so strongly I thought I had oxygen toxicity. I was feeling like I would pass out at any moment and I got some horrible colds/flus/sinus stuff that was very disconcerting.
I needed to back off and take the hbot slowly. A few times/week instead of every day. Try to listen to your body. Don't be too much of a warrior to your own detriment.
Oxygen and pressure are a strong modality. I do combine breathing oxygen with the chamber. I still herx in the chamber on a regular basis.
It increases my twitching and my head pain, shooting nerve pains in my head.
For inquiries about testing, my doctor sent the blood to a lab in Germany called Infectolab. The website is www.infectolab.de
It is part of the BCA clinic in Germany run by Armin Schwarzbach, MD, PhD. There is a youtube videos about his testing procedures if you search his name/lyme from a talk he gave in Florida.
Also, feel free to PM me.
Posted by Haley (Member # 22008) on :
JCarl - I have those I will try them.
Thank you so much mdbq. That is some great information. I probably will send you a PM at some point.
I tried the Cobra position, and I think that helped. My ears will stayed clogged for days, but I never take a day off of the chamber. My guess is they would unclog if I took a couple of days off.
Also interesting about the tests and the probiotics. I will take a look at those probiotics, I never know how much to take.
Posted by mbdq (Member # 26277) on :
Hey group- here's another update:
I am up to 306 hours of mild HBOT with O2. That's quite a committment! I am still diving every day I reasonably can. Basically, if I am in the same state, I am in the chamber.
I went to my LLMD last week after being back on ABX for 5-6 weeks. I was back to my usual pattern- initial herxing from abx, then a "stalemate" between the herbs/abx where I basically have low level flares/herxs with no real improvement. They wanted me on an additional antibiotic- I said no. Better yet, my being/body said NO!
I explained how I've been down this road before for YEARS. It apparently doesn't work for me. I asked- What else can we do to support my healing? And their answer was to try some herbs (I've been down that road too, but it fit better with my vision) So I have discontinued the abx and I am back on some herbal formulas. Also trying some Manuka honey.
I realized when I was driving home from the Doctor that I really feel it's pretty much up to me at this point to get well. I've been to the best. I've spent 10s of thousands of dollars. I've taken all the drugs.
It's not as scary a place as I thought it would be...at least it is something different.
I will continue with hyperbaric and work with some supportive therapies as I feel fit with my healing journey. I may get fully well. I might not.
I am working on being OK with that. I am not giving up, but I am accepting and surrendering to my situation, which I know will help on many levels.
Posted by Phoiph (Member # 41238) on :
mdbq...
Just so you know...I was NOT fully well at 306 hours (10 months for me) of mHBOT either!
At that point, I was much, much better than when I had started, but it still took several more months before I could go back to work part time, etc., and resume a semblance of a normal life.
I truly believe you are still healing and will get all the way there. There were many times where I felt that things were probably going to stay as they were, then I would take a step forward again. It wasn't predictable, and I never knew if I would become fully well...or just stop making progress at some point.
And, although I felt recovered after 1-1/2 years, I waited another 6 months to post my story to be confident I would hold on to gains. In retrospect, I have continued to improve in many ways since then (now 3+ years since beginning mHBOT).
So...it is a process...and I'm glad you aren't giving up on it!!!
Posted by CD57 (Member # 11749) on :
MBDQ thats a huge achievement and you are to be commended! I hope that it is as Phoiph says and there is more healing to come.
You have come a looong way though.
Posted by Beloved (Member # 37415) on :
Greetings All,
I'm returning after a long absence. Knee and hip replacements done and recovered, and a couple meds dropped as well. I am recommitting to HBOT and my Respiro.
I have done 3 dives so far,= 8 hours so far. I figure that while I'm in there I may as well stay a while, and my die off hasn't been really noticeable until today.
This morning I started shivering. I wasn't cold. I began to be aware that the die off was in my brain, maybe via the Central Nervous System? So I just snuggled back into bed to ride the wave. It went on for 5+ hours!
So that's my first herx, after 3 dives equalling 8 hours. As a result my mind seems clearer, less processing thru cotton balls.
Beloved
Posted by Beloved (Member # 37415) on :
Greetings All,
I'm returning after a long absence. Knee and hip replacements done and recovered, and a couple meds dropped as well. I am recommitting to HBOT and my Respiro.
I have done 3 dives so far,= 8 hours so far. I figure that while I'm in there I may as well stay a while, and my die off hasn't been really noticeable until today.
This morning I started shivering. I wasn't cold. I began to be aware that the die off was in my brain, maybe via the Central Nervous System? So I just snuggled back into bed to ride the wave. It went on for 5+ hours!
So that's my first herx, after 3 dives equalling 8 hours. As a result my mind seems clearer, less processing thru cotton balls.
Beloved
Posted by Phoiph (Member # 41238) on :
Hi Beloved...
Welcome back to mHBOT
I think we may have connected before you had your knee replacement(?)
I am very happy to hear you are using your Respiro again.
Are you using supplemental oxygen from an oxygen concentrator with your chamber? If so, I am concerned about how long your sessions are...1 hour sessions are recommended so you don't overdo and produce more free radicals or release more toxins than your body can handle...
Oxygen really is a drug, and can be "overdosed" on.
Hope you don't mind my unsolicited advice...but I know it wasn't good for me when I occasionally fell asleep in my chamber for a few hours...
Posted by Beloved (Member # 37415) on :
Yes, Phoiph, we did PM to touch base just before the surgeries. I don't know yr email any more; perhaps you can't find mine...
I did email with our friend L* about my # of dives vs hours in the chamber. I'm waiting to hear back from him again.
I Can say his friend that sells the compressors said that the dive loses it's efficacy after 1+1/2 hours in the Chamber. But my LLMD Dr says to try to stay as long as one can, to try to stay in overnight.
I couldn't get comfy enough for overnight; the best I can do is lay on my back, rest, maybe pray. I can't sleep on my back.
Posted by Phoiph (Member # 41238) on :
Some people stay in the chamber longer if they're not using supplemental oxygen...does your LLMD know you are using the chamber with 02 (if, in fact you are)?
Yes, I am using both compressor And concentrator. I'm keeping track via journaling. After 3 dives this is my first herx. Also I had prayed that my brain might get some recovery in the beginning. It certainly gives me encouragement for this journey.
Posted by Beloved (Member # 37415) on :
Yes, Phoiph, my LLMDs clinic has 2 Chambers, and we both interact with the people at Genox.
Posted by Beloved (Member # 37415) on :
Greetings, fellow Lyme MHbot travelers.
I read, 'It's not the goal, but the direction you choose.' In our cases I think it's both. It is a direction that gives me hope.
I have had this demmed disease for 23 years, October in it's first week of 1991. I spent my 30s thru my 40s, now going into my 50s with this cruelty straight from the pit of hell. But on some level I have to hold onto my sanity by thinking that this circumstance protected me from something much worse, and/ or what have I learned through this.
I'm at 13 hours/ 5 Dives so far. I welched on my dives last week; the Chamber is in the unheated glassed in porch and we had a cold snap. A dear friend says "Then be sure to dress warm!"
I concede that I can't do such long dives as I started. I was in the 'Pod' for 3 hours Saturday plus 1 hour for depressurizing. As a result: yesterday I was pretty immobile as well as slept longer than usual. Mostly from feeling crappy. I do feel better today.
So I am going to aim for 90 minutes, as per my MHbot selling friend of 20 years says the Hbot dive has 'a max rate of return, probably around 90 minutes.'
After 13 hours I think my mind is a bit clearer and I think less pain. Positives are Feeling more upbeat, and singing more throughout the day. (I have/ had a degree in music. But who wants to sing- using one's whole body- when one feels like crap?!!!) I hate the part about 1 step backwards after 2 steps forward. The progress is so subtle! But still I'm just starting. I must hold on to the cumulative steps forward.
I'll check in again when I notice another landmark.
All Good Things
Posted by Beloved (Member # 37415) on :
I almost forgot: I am noticing some relief in my left shoulder. Since my left hip & right knee replacements I have gone from 1 cane to 2 canes, using them more for support than balance. Getting old stinks! . Using the canes more for support has really aggravated my left shoulder. I also seem to be walking a bit more strongly.
Also itching more. Agitating the buggers? I would like to think so.
Posted by Pam08 (Member # 19203) on :
Thank you for sharing your updates Beloved! Some of us are definitely still interested to hear how others are doing with this.
Posted by Phoiph (Member # 41238) on :
I wanted to share this testimonial video I just received featuring people with Traumatic Brain Injury (TBI) and Post Traumatic Stress Disorder (PTSD) who participated in hyperbaric oxygen treatment as part of a study in Pocatello, Idaho.
Note that many of the mental challenges and symptoms are similar to those experienced with Lyme Disease:
Thanks so much for sharing this! It's been awhile, things are continually getting worse for me and I have every intention of getting a chamber in my home after the holiday.
Wondering, and I hope I'm writing this clearly, is there any info on brain injury that is continuing to take place? Meaning, these people that have been in accidents etc., the injury is severe but complete, with my case (as in most of us with Lyme, bart etc)the infection still lives and continues.
Wondering how that affects success. Hoping this finds you still doing amazingly well!! Wishing you a very Merry Christmas!!
Joahsark (Penny)
Posted by Haley (Member # 22008) on :
Thanks for the video Phoiph.
I have been doing MHBOT since September 3rd and I am doing fairly well.
I still have some issues, also I believe I had some oxygen toxicity so I now will take off a day or 2 a week.
My brain problems have definitely gotten better, which was my biggest concern. I still have some problems with weakness and fatigue, but my doctor an I are always finding pieces to the puzzle.
I want to ask people here (if anyone is still following this) what type of diet so you follow? I know that Phoiph eats mostly Palio.
Also, does anyone think about the "free radical" effect of oxygen, do you take any supplementation to address this?
Any feedback is appreciated. In fact if anyone knows an article or book on the subject that would be great.
Overall, I am doing quite well, I have come a long way in many regards.
[ 12-13-2014, 08:21 PM: Message edited by: Haley ]
Posted by Phoiph (Member # 41238) on :
Hi Joashark...
I have helped several people who have traumatic brain injuries (without Lyme) get started with mHBOT, and find that in general, there are differences in their reaction/response to mHBOT compared to those who have had toxic exposures or infectious conditions (like Lyme & coinfections, mold exposure, etc.).
What I have observed, is that in general, people without infections or toxic conditions (i.e., traumatic brain injury only) don't seem to need to work up to the protocol as slowly, as they are not as toxic and don't have "herx"-like detox reactions.
Also, they may not require treatment over as extended of a period of time as those with Lyme, although each case is individual.
People with Lyme not only have multiple infections and toxicity to deal with, but often have been ill for a long time, and require healing of multiple body systems. There may be many "layers" of illness to address, and this takes time.
That said, it is possible that people with Lyme may have an advantage in the brain department over a traumatic brain injury, since their brain dysfunction, although ongoing, may be of a functional nature (i.e., cells are idling "offline", but not "damaged"), as opposed to an actual traumatic injury that may involve physical insult.
One of the great things about mHBOT, is that it not only increases the efficiency of the immune system (so it can better fight the infections), but releases stem cells and helps to grow new nerve cells...so it can be very effective in both situations.
I am a good example of how mHBOT heals brain dysfunction from Lyme and coinfections...at my worst, I couldn't figure on out which corner of an envelope to place a stamp, nor could I remember what I was doing long enough to complete a simple task. This went on for years, and I was certain my brain was permanently damaged...but full function eventually returned via mHBOT.
I'm currently working on gathering video documenting the progress of people with Lyme using mHBOT...but in the meantime, you may be interested in this mother's video testimonial of her 9 year old daughter's recovery from viral encephalitis with HBOT:
So glad to hear you're doing so much better overall. That's great progress, especially considering the relatively short time you've been doing mHBOT!
To respond to your question about free radicals, I was at an office Christmas party last night given by my neurologist friend who runs an HBOT clinic. We were all standing around the 6-person chamber, and someone asked the very same question regarding oxygen and free radicals.
I wish I had recorded my neuro friend's explanation, but the upshot of it is that the free radicals created via oxygen under (hyperbaric) pressure react very differently in the body, and are actually a beneficial part of the healing process, and not harmful. She said this is a common myth/misperception, that unfortunately deters people (including doctors) from pursuing HBO.
I have asked her for a more in-depth explanation, and will post it when I receive it from her...
Although she doesn't recommend antioxidant supplements (which are best obtained through diet), she does recommend 2 supplements to her neuro patients:
Am I the only one on Lymenet that is still doing this protocol?
Posted by Phoiph (Member # 41238) on :
Haley...
Here is the response to your question regarding concerns about mHBOT and free radicals from my neurologist/HBOT friend:
"...Free radicals are a necessary part of the healing activation that takes place with HBOT. Oxygen radicals interact at a DNA level to modify gene expression: upregulating healing processes and downregulating inflammatory and destructive processes. In a hyperoxic condition, the physiology is different. Oxygen radicals are broken down by enzymes after they have been effective. In hypoxic circumstances oxygen radicals linger and are destructive. There is a research article that I can give you as a reference. [Oxidative stress is fundamental to hyperbaric oxygen therapy. Stephen R. Thom. Journal of Applied Physi9ology 106:988-995, 2009.]..."
Haley, you're not the only left on Lymenet doing this protocol ;-) I'm guessing most are rather quiet in this thread since results with this treatment don't happen overnight, and sometimes there isn't much to report.
I am 295 dives in now (1 hr daily). I stopped all antibiotic treatment on July 13th, not because I was symptom-free, but because I felt that the drugs had taken me as far as they could. So I've been doing just mHBOT for 5 months now and have not experience any rapid decline after stopping the drugs.
As far as symptoms go, I believe mHBOT has kept my muscle, bone, and most nerve pain in check. I only experience intermittent burning spinal pain at the base of my neck where it meets the upper back. I believe my brain is clearer now and I experience windows where I feel like "the real me" is peeking out (if that makes any sense?) In fact, I've starting contemplating going back to finish school sometime in the near-ish (not too near!) future, whereas half a year ago I couldn't even think about doing such a thing. And lately, I've starting feeling the desire to take up my oil painting again...a passion I had lost many years ago when the illness completely took over my mind/body. And I'm grateful to even be able to feel that desire again. Also, severe fatigue comes and goes, but overall, I am able to stay out of that darn bed most of the day now :-)
The past couple of months, though, I have been experiencing many upper respiratory symptoms? My lungs feel kind of full, like I need to hack up something, a kind of wheezing feeling. And I have a constant sore throat, tender lymph nodes behind the ear, congested head and running nose that gets stuffed especially when I am lying down. And burning tired eyes, puffy swollen face, which I generally have all the time.
I have a question for Phoiph or anyone else using the oxygen generator... How do you clean the filter in the back and how often? I wash mine out with hot water every month or so and let it completely dry before putting it back in, but I wonder how well I am cleaning it, and how well it is at filtering the air I am breathing through the mask... I do have a dog in the house, and I assume, the general amount of dust and mold in the air... I guess what I am saying is, I hope breathing that air through the mask is not contributing to my allergy/lung issues? I was so concerned that I even bought a super expensive air purifier with 6 different filters to run in my room all day.
Anyway, HAPPY HOLIDAYS to everyone :-)
Posted by CD57 (Member # 11749) on :
Wow Spinning that is amaaaaazing. You have come a long way from when you first started, remember!?
Haley, I don't post because I can't consider myself as doing the protocol as of yet. I'm not in it for an hour.
Posted by spinning122 (Member # 42223) on :
Lol CD57, now that you mention it.. yes, in my earlier emails to you I was in pretty awful shape, huh? It's hard to realize when you're making progress with this because it's so gradual. I really hope that you can eventually work up to the protocol and make some solid improvements as well CD57! Sending you my best!!
Posted by Phoiph (Member # 41238) on :
Hi Spinning...
Thanks for the update...I especially like the part about your renewed interest in oil painting (you must post one of your pieces for us)!
You are doing fine with cleaning the filter...you can do it more frequently if you like. You can use mild dish soap and warm water, rinse well, and let dry thoroughly before putting it back on the concentrator.
It is very dry and dusty where I live, and sometimes in between washings I take it outside and clap it between my hands.
There are also filters on the compressor...they are the 2 black metal spherical things on the side. You can unscrew them from the compressor, then twist them open (but they are sometimes difficult to open). There's a paper filter inside that you can dust off. The compressor also has a long glass filter, which you don't need to maintain.
The air you're breathing in the chamber, which is filtered via both units, is cleaner than what you're normally breathing in your home, so no worries there...
I am wondering if some of your discomfort has come from the dryness, either with heat in the house, or from the drying effects of the oxygen on your airways(?). There is a humidifier attachment for the concentrator, but I hesitate to suggest it, because it requires meticulous maintenance for health reasons, and there is no real evidence I have seen that it is of great help...but something to consider if you think this may be the problem. We could contact the vendor for more thorough information if you're interested, and should also run it by your doctor if you decide to try it...
Posted by Phoiph (Member # 41238) on :
CD57...Yes...you are always so supportive of others...we are sending you lots of encouragement and know you will get there!
Posted by spinning122 (Member # 42223) on :
Hehe, I said that I've recently been feeling the desire to paint again..didn't say I actually started or that I'm any good at it
Thanks for the info Phoiph. The discomfort is definitely not from dryness in the house (I kinda wish that were the case!) so I don't think I would need the humidifier attachment. Where I live, it's almost always moist and foggy (side note: the possibility that mold might be hindering my recovery process terrifies me )
Haley, I just realized that you asked earlier about our diets. Yes, I am also following a Paleo-like diet as much as I can. Anything to nourish the body and keep inflammation down to a minimum. http://perfecthealthdiet.com/the-diet/ Posted by joahsark (Member # 20598) on :
Thank you so much for explaining Phoiph, that makes perfect sense. I will watch the link and be encouraged.
Best, Penny
Posted by Haley (Member # 22008) on :
Thank you beloved and spinning. I know that it takes time and effort to come by the thread an update, but it really helps me.
Even if it's just to know that I am not alone in this journey. I find that we can learn about this therapy as we continue to get feedback from everyone.
Phoiph - Thank you so much for the article. I've printed it out an will sit down and read it. My simplistic way of looking at it is, yes the free radicals help in this therapy as they can destroy bacteria, but maybe in some small way it is like antibiotics as it can also affect the good cells. With antibiotics we make sure we take probiotics and eat well. With Oxygen maybe we need to supplement antioxidants. I'll read the article first before trying to comment on such a technical subject.
That is so funny about the stamp. I had the same experience. I remember thinking to myself, "wow, this is an all time low, I can't figure out where to put this stamp".
I am finding that the oxygen exasperates issues with my skin (an infection on my skin) and it also exasperates issues in my gums and teeth. I'm also having some heart issues, which is most likely unrelated to my illness or to the oxygen.
In my humble opinion this makes sense, certain pathogens that manifest on the skin "like" oxygen. So, I will treat the bugs that are not being "helped" by the oxygen (after I identify them, that's the tricky part). It' like a Rubik's cube, but thanks to the oxygen and to Phoiph that puzzle is slowly being solved.
Please, all mHBOT users, continue to come back every few months and post.
Also thanks for the diet tips, I am eating a good percentage of raw foods, but I do eat meat too.
Posted by CD57 (Member # 11749) on :
Haley did you find a way to get around your ear problems in the chamber? I experience pain on one side of ear but have had this always. I get stabbing ear pain sometimes but think that may be unrelated to chamber as it's been there along.all
Posted by Phoiph (Member # 41238) on :
I wanted to share an encounter I had a couple of days ago.
I was listening to some musician friends perform in a very small, out of the way town 25 miles from where I live. It was crowded, and someone I had never met sat next to me. He happened to mention that he used to be a sports medicine doctor years ago, so I asked him if he had ever heard of or used hyperbaric.
Turns out, he not only had used hyperbaric for himself and his patients, but in the 80's was the researcher and co-developer of the original Gamow Bag...the first soft chamber (developed originally for altitude sickness), and predecessor of the home chamber, the company which was eventually bought by DuPont, then Oxyhealth. He still owns a few of the original bags.
The conversation was very interesting...I learned a lot from him, and he reiterated what I already knew...the amazing powers of oxygen under pressure.
What are the chances? Probably pretty good in my world...things like this seem to happen to me all the time these days. It was a gift to have had the chance to let him know that his knowledge and research had given me my life back, and was helping a lot of other people...there are no coincidences!
Posted by Haley (Member # 22008) on :
Wow, Phoiph, what a great story... and yes I need to remember more often that there are no coincidences... I would love to talk to that guy.
CD57 I still have problems with my right ear, but I am now able to go in the oxygen chamber. The first time in the chamber it was so painful, I thought my eardrum had ruptured.
Posted by mbdq (Member # 26277) on :
That is a fantastic story Phoiph- thank you for sharing! We are all connected.
For those with ear issues, my ears remain a bit "sticky" at times but overall I am tolerating the pressure changes very well by pressurizing while on my stomach in the cobra position. Don't forget this position if you haven't tried it!
My husband is now using the chamber every day for an hour. We have to plan our schedules so we can both get in. He is no longer on antibiotics (not that there aren't plenty of docs who would prescribe them, but we felt they weren't really helping him progress and he needed a break). He feels the HBOT is helping, but he is also very frustrated that he is not 100% better yet- he isn't a very patient man and we worry that he will end up like I did- sick and in pain for years on end. We are grateful that we have this modality to treat.
I still use the chamber every day and I am seeing some nice time periods where I am PAIN FREE! It's a few hours here and there, but wow it's like being on some type of high! Energy is also good. I am at 338 hours.
As for diet, we are basically doing a combination of the Wahl's protocol and the GAPS diet. I am really focusing on helping both of us heal our guts. All the antibiotics have taken a toll. I am sure I have had gut dysbiosis since I was a child. It's time to address that piece of the puzzle. Lots of broth soups, cooked veggies, etc. I am gearing up to do the full intro diet for GAPS after Christmas. I will let you know how it goes.
Happy Holidays to all! Keep diving!
Posted by CD57 (Member # 11749) on :
Spectacular MB ! I've admired your dedication to the plan. You make time for it and its paying off.
Phoiph amazing story! Just in time for Xmas.
Posted by Marz (Member # 3446) on :
Cd57 I had a similar experience flying last week. At a certain.point in the air my headache stopped, stiff neck went away, and my thoughts were normal.
Thought it was due to cabin pressure but maybe it waz due to altitude. I literally didnt want to come down to earth!
Posted by CD57 (Member # 11749) on :
spinning sent you a PM
Posted by noodlydoo (Member # 3273) on :
Just wanted to add that mHBOT has been one of the best treatments I have done over the years. Not a cure, and it was a S L O W process. Can't emphasize enough that for me, it took a solid 2-3 years. But when I got 24 months into daily 1.3 dives roughly 5x a week for an 60-90 min's, plus cutting sugar and gluten from my diet and some supplements, I eventually looked back and said, wow! It's a journey, not a destination. It was two steps forward, a step back. It was NOT overnight. By far, one of the treatments I would never give up. You can probably search for old posts of mine, have not been on Lymenet for years. I suspect a certain amount of commitment is truly needed to recognize any gains. Best of luck.
Posted by CD57 (Member # 11749) on :
amazing noodlydoo! what is your story - what infections and conditions did you fight?
did you really do daily dives for 2 years, wow?
Posted by CD57 (Member # 11749) on :
up
Posted by Peimomma (Member # 45177) on :
Thank you all for the posts over the last 18 months. I've read each of them and contacted Phoiph to start the process.
I have learned so much from reading what others have done and what therapies or meds you each are using.
I've been sick for 25 years and have tried all the meds and therapies out there and some work to a point. I look forward to reading more updates and will post once I get started.
Posted by CD57 (Member # 11749) on :
up
Posted by MichaelTampa (Member # 24868) on :
I had a session HBOT (not mHBOT, but HBOT) at a doc office, was looking for some thoughts/suggestions on what happened.
The problem I had was sinus pain, above my left eye mostly, and they adjusted the pressure so I could manage to be comfortable, no doubt with safety a concern. After the session, he said he had to put it just at "chamber pressure", that it didn't get close to up to the pressure they would normally use, that it was even less than 1.0 ATA.
The last comment, less than 1.0 ATA confused me. I kind of thought 1.0 ATA would be regular atmospheric pressure at sea level. Is that something else?
So I am assuming what I had was even less than what mHBOT would be?
I really just had one session scheduled, trying to scope out for the future, if I wanted a whole series of HBOT treatments, or I wanted to get a mHBOT machine, or if I wanted to go in a completely other direction.
What he told me, if I wanted to puruse, I should do a number of anti-inflamatory and other anti-this-or-that type things. He really spoke too fast for me to remember everything he was saying, but I heard ibuprophin was one of the things he listed, the others fell in that general category to my untrained ears as other things people take for pain relief.
Generally I have avoided the ibuprophin and aspirin and that kind of stuff (though he did not mention aspirin by name), knowing some cause GI issues and others cause liver issues and I have enough of those.
I had taken 2 grams of quercitin about 1 hour prior to the treatment, intending that would help, but still I did have that problem.
My conclusion is maybe I need to treat whatever problem I have in my sinus before pursuing, perhaps there is an infection in there, I believe there was in the past, and I have always had problems in airplanes.
If anyone has any thoughts on if there might be friendly enough ways to deal with the sinus issue, though, I am curious to hear.
Posted by Phoiph (Member # 41238) on :
Hi Michael...
It is possible that they were referring to 1 PSI (pounds per square inch), rather than 1 ATA (atmospheres absolute).
In that case, you were probably only able to pressurize a little (still somewhere below 1 PSI), which would convert to only slightly above 1 ATA (1 ATA is sea level).
It sounds like your sinuses were congested and wouldn't allow air to equalize (the ears being the other place that this can happen).
I suggest ruling out an infection (w/your doctor or ENT), and discuss trying natural ways of clearing your sinuses (e.g., saline and sterile water rinsing with Neti pot, acupressure, etc.). Naturopaths usually have good suggestions.
Be cautious of nasal sprays, etc., as these can only be used for a short time and can have a rebound effect when you stop...and I agree with your concerns regarding ibuprofen.
Posted by CD57 (Member # 11749) on :
Anyone talked to Looking4Hope?
Posted by nitsuj1225 (Member # 39866) on :
Well I just received my chamber yesterday and finished my first 30 minute dive tonight! Just wanted to add to the thread that another lymenet user is using mhbot. Will update periodically.
Posted by Haley (Member # 22008) on :
CD57 I have not heard from Looking4hope, I tried to text him, but never heard back. I have since lost all of my contacts. I wonder if Phoiph has heard from Looking4hope.
nitsuj1225 - welcome to the one and only Lyme mild hyperbaric oxygen group. You won't regret it. Keep in mind it takes a long time. That's what Phoiph kept telling me.
I'm here to give a brief update, I'm sure that I will repeat some of the things I have already said, oh well, it's an update.
I have had my chamber since 9/3/14. I have been in almost everyday for one hour, but I am beginning to take a couple of days off a week. Partially because I am doing many different things, not something that Phoiph recommends.
I also have an extremely clean diet which includes 64 ounces of green juice a day and 3 to 4 liters of good water. I pay someone to make juice for me, but since I am beginning to have more energy and less weakness I also make them myself. I just throw a bunch of healthy stuff in a blender. The hardest part is cleaning and cutting up fruits and veggies. There are ways to make them very tasty, just google creamy smoothies (or something to that effect).
I have a PEMF mat that I use about an hour a day, if I can fit it in to my health ritual.
Additionally, I have started the Cowden protocol, only because my SIL sent me the first month and had to try it. I truly believe this protocol helps, but it does make me tired.
Hopefully, I am not speaking too soon, but I do believe I am at a place where I will not have to go back to antibiotics (God Willing). Antibiotics have been the only effective treatment for me in the past. I have not been on them for at least 2 months, and sense that my body is continuing to strengthen along with my immune system. Believe me, I still have days when I can't get out of bed, but I'm confident that when I am off of the Cowden herbs the fatigue and weakness will lessen.
All I can say is that my bodies' systems are "working" better. For example, when I go in the sauna I sweat buckets. In the past, I would go in the sauna, not sweat much and come out feeling worse. When I wake up in the morning my head does not feel like a bowling ball that I am unable to lift off of the pillow (although still some fatigue, no doubt).
My biggest issue now is cognitive. I become easily confused and feel as if I'm floating or drugged. Sometimes if I'm speaking to a group of people I feel like I am not making any sense at which point I say to myself "whatever, I'm still fabulous!".
I thank God for Phoiph and those like her that have unselfishly paid it forward, looking for nothing in return. These are the people that have provided each piece of my puzzle. I hope to one day follow in their footsteps.
My advice after having been sick since 2007, diagnosed and treating since 2009......
Pray that God would lift the fear and keep breathing pressurized oxygen... believe that our perfectly designed bodies will prevail in the midst of all the darkness and suffering... one day you will tell your story to someone else and pull them out of the black pit of hell.
[ 02-08-2015, 11:31 PM: Message edited by: Haley ]
Posted by Phoiph (Member # 41238) on :
Haley...
Encouraging update!!! It made my day, and I'm sure is an inspiration to others!
Thank you for the kind words...and I love your advice. I also love how you call yourself "fabulous" no matter what...(now that's the spirit!!!)
I have connected with Looking4Hope...he's very busy and has been through a stressful time , but doing well overall. He said he will post an update sometime soon...
Posted by nitsuj1225 (Member # 39866) on :
4 dives in so far. Started at 30 min, then increased 5 min every session so I will be doing 50 min tonight and eventually be at an hour on Thursday and remain there.
Definite herx (increase in most symptoms) but manageable which is why I have been increasing the time. I'm glad I didn't start at an hour. I had horrible anxiety over the weekend and yesterday morning but that has subsided some so I'm glad I pushed through.
One thing I notice while I'm in the chamber is improved circulation. I have chronic cold hands and feet. After 10 minutes in the chamber, I feel normal blood flow returning to my extremities. This lasts until the morning so I'm hoping over time, this will be more of a permanent improvement.
Nerve pain and head pressure are my worst symptoms that I'm hoping to hit with the chamber. Time will tell.
Posted by joahsark (Member # 20598) on :
So glad to see all the new journeys with mHBOT beginning. So thankful for Phoiph. Still planning and saving to get a chamber in my home. I can't wait to see if any of those with horrible brain pressure, anxiety etc get relief.
Thank you all for sharing your stories.
Posted by Peimomma (Member # 45177) on :
Many thanks to Phoiph for pointing me in the right direction during the purchase process. It was worth the money to have a chamber at home to use.
I've completed 14 dives 1 hour each. The first 3 days I felt more energy and thought wow this is great and then I woke up on day 4 to a herx reaction. It wasn't bad but enough to know something is happening. I did my detox and green juice and was feeling better by 1000. I've had herx reactions each day some a little more than others but nothing terrible.
Benefits I have been logging in my journal - fall asleep quickly -don't wake up stiff in the morning - better circulation in my hands and feet - no migraines -no muscle twitching - less brain fog - no afternoon naps needed - better energy - less joint pain I'm on no medication or supplements, just a balanced diet and green juice. I have 80-100 oz of water a day and I use coffee enemas for my detox.
More updates to come
Posted by Looking4hope (Member # 43181) on :
Hey There- Guys and Gals, hope everyone is doing well.
I have been somewhat "MIA"....I had a ton of stuff going on in my personal life which prevented me from doing "Mhbot", on a regular basis.
I did however manage to get "Lots Of Skateboarding In", with my son who is doing AMAZING things. I thought this was pretty cool considering this time last year I had trouble walking and for the most part was homebound(-:
Over the fiscal four months I have been diving without supplemental oxygen on average of only "Two Days A Week"!
Now I'm not suggesting anyone do this as I only did this because I was simply trying to "Maintain", the gains I had made over the fiscal nine months or so.
Here is what I noticed during that time.
I drank a gallon of freshly squeezed orange juice everyday which I like to call "Liquid Sunshine".
For the most part I was 80% RAW and 20% cooked I also consumed allot of "Rice Based Pasta", covered in tomato sauce with basil and onions.
I'm also able to digest most fish fairly easily as well. I did continue to consume caffeine in the morning as I would be totally lost without it.
I continued to wear my high powered energy pendent everyday which I believe does help me increase the Voltage in my body.
I also continued to get plenty of sunshine, and for the most part got rest when I could find a way to get some.
I have since started diving more often and I'm going through some herxes right now however I simply take a day off if I feel it's stressing my body out to much.
Over the fiscal months I was simply in "Maintenance Mode", I'm now trying to move forward and really make some appreciable gains over the next year!
We all have different "Personal Life Situations", which can affect the way we utilize MHBOT.
Some of us have others we care for or who depend on us which makes healing challenging. The herxs can be viscous for no apparent reasons at times, and other times it's simply "Calm Waters And Smooth Sailing".
I have found that within five minutes of using the chamber, I can mitigate my Herxs somewhat by first taking a steaming hot shower followed by "Freezing Cold Water", for two to three minutes!
The Key I have noticed is to end the shower with "Cold Water", which seems to close my pores.
I have read this not only helps strengthen your immune system, but also helps close your pores for those of us who sometimes sweat in the chamber.
I would say I'm 75% percent better, however getting back to 100% or possibly even better "Pre-Lyme", is going to take serious work and discipline on my part.
It's kind of analogous to those who become champion athletes....what separates them from their piers who are either average or just really good.....NOT GREAT?
It's not always just talent alone, or in this case the "Chamber", that's I believe is going to get most there.
There are a number of variables that I believe must be adhered to regularly!
I'm not a doctor I'm just sharing my own personal experiences and observations with MHBOT so it may serve others on their Healing Journey.
Like Phoiph, and other here I believe we are all connected and creatures of a much higher power at work.
If even the smallest amount of my written text, or my words effect someone in a positive light who has either currently suffered or is suffering then I would die a happy man tomorrow(-:
I will try to update regularly moving forward, as I have started diving more regularly once again(-:
Posted by Phoiph (Member # 41238) on :
Several times on this thread questions have been raised regarding the use of additional antioxidant supplements due to possible concern about oxygen free radicals produced by mHBOT.
I had posed this question to my neurologist friend who runs an HBOT clinic, and her response, which I posted earlier in this thread, was:
"...Free radicals are a necessary part of the healing activation that takes place with HBOT. Oxygen radicals interact at a DNA level to modify gene expression: upregulating healing processes and downregulating inflammatory and destructive processes. In a hyperoxic condition, the physiology is different. Oxygen radicals are broken down by enzymes after they have been effective. In hypoxic circumstances oxygen radicals linger and are destructive. There is a research article that I can give you as a reference. [Oxidative stress is fundamental to hyperbaric oxygen therapy. Stephen R. Thom. Journal of Applied Physi9ology 106:988-995, 2009.]..."
Today, I came across this article which gives a great explanation of why free radicals are important and how antioxidants taken in supplement form (rather than synergistically in food) can be overused and defeat their purpose:
[ 05-08-2015, 01:35 AM: Message edited by: Phoiph ]
Posted by Peimomma (Member # 45177) on :
I'm here to give an update but I'm doing this the easy way and posting my 3 min videos. I took Phoiph's suggestion before I started and I journal every day all that I do, how I feel and anything better or worse.
This first video is my first day of this mhbot journey.
I will continue to update through videos and post them on YouTube so others can find information on this awesome and natural treatment.
I'm also taking face photos at the end of each month and have seen some positive changes already. Even in the videos I see a big difference.
Posted by Haley (Member # 22008) on :
Wow Peimomma... that is sooooooo awesome. I love those videos!
I wish I had done that, maybe I'll start now.
You and I have the same exact set up, same concentrator also. I also do a minimum of 32 ounces of green juice a day.
Are you still on Cowden or did you stop that? I have been doing Cowden since the beginning of the year.
Phoiph - a couple of technical questions .
Is it okay to take electronics in the chamber? They say it's very dangerous, if there should be a spark it could be flammable. I usually only have my phone in there.
[ 04-18-2015, 06:10 PM: Message edited by: Haley ]
Posted by Phoiph (Member # 41238) on :
Hi Haley...
In response to your question regarding taking electronics in a soft/home chamber (when pressurized to 1.3 ATA with room air, and used with supplemental oxygen through mask via oxygen concentrator), here is video of experimenters attempting to start a fire in a chamber under the same conditions:
Circumstances are much different, however, when a chamber is pressurized using oxygen vs. room air, or when supplemented with 100% medical grade oxygen as in many clinical settings. In these situations, electronics, newsprint, jewelry, synthetic clothing, etc., are not allowed due to spark/fire risk.
That said, soft/home chamber manufacturers are not likely to outwardly encourage the use of electronics, so one must make their own decision...
Posted by Peimomma (Member # 45177) on :
Hey Haley,
No I haven't been on the Cowden protocol since Jan 2014, that was my 6th month. I was still positive and all my numbers were worse. Cd57 dropped to 6 from 18 and Ca4 went from 11,000 to over 68,000. I don't know if my body was in fight mode because even though my numbers were worse I felt a little better.
So after the 6 month I stopped and was only seeing my acupuncture doctor and taking the herbs he gave me for what he saw in my condition on my tongue and he held my wrist? It was in March 2014 I started a constitutional homeopathic remedy. That's all I did for 2014.
Then I started MHBOT February 2015. I still take my remedy as needed, Chinese herbs for sweating and a liquid vitamin added once the herxing began a few weeks ago. I do my 3 coffee enemas a day and keep on going.
I think I'm doing well because I spent 18 months with no meds in my body and just focused on building my immune system. Over the last week in my journal I've track my herx reaction and know they set in 7-9 hours after my treatment. I choose to treat in the early morning so they start around 1-3 in the afternoon and I can drink plenty of water and do a CE before bed so I sleep well.
Me and hubby bring our cell phones and iPads in the chamber, I've never heard of an issue in the mhbot. They must have been referring to the hard shell chamber.
Posted by Peimomma (Member # 45177) on :
And Haley it's never to late to make those videos. It's kind of cool to see how you change, like I'm smiling by the third video. There are days I actually feel like my old self. I forgot to add in my video that to celebrate my 60th dive hubby and I did a 220 mile motorcycle ride to the beach. No pain on the ride day or after just some fatigue from the wind.
And thank you, I'm glad you like them. I hope one day my video will show me going for a run and leaving for my new job...but for now I have a goal of walking a 5k in June.
Posted by Peimomma (Member # 45177) on :
Here's my latest update but plan on a video in the next few days as well.
I have my first medically documented improvement with the treatments.
My eyesight has improved, I still have a slight astigmatism in left eye, but my right eye had no astigmatism any longer. Reading prescription is better too.
The doctor was shocked because he just saw me in mid November 2014 for a new eye script because left eye had deteriorated so much just since April 2014. First eye exam where there was positive changes. 91 treatments in the books and I told him I'd see him in 6 months to see if my eyes continue to improve with the O2 treatments.
I'm walking more each week as I keep track with a Fitbit and can look back each day, week and month to see progress.
Posted by Peimomma (Member # 45177) on :
Thanks for posting. What is the liquid detox? The one in the brown bottle.
It's so great to hear that you are feeling better.
That's interesting that you know when you have a herx. I will try to pay attention to that. I have no idea when I have a herx.
You may have already explained how your herx feels. What exactly do you experience when herxing?
I'm still experiencing a tremendous amount of fatigue and weakness. I may add the enemas. I do them as needed. 3 a day seems like a lot. Have you tried it without the coffee? Do you notice a difference between coffee enema and no coffee enema?
Posted by Peimomma (Member # 45177) on :
It's called Whole Body Detox Liquescence. Not to be taken near coffee, mint or any strong food. Should not consume food for at least 30 min if possible.
For me I start to feel nauseated first, then my head feels full and the brain fog sets in again. It's hard to think and find words. I might have some pain and fatigue if it's really bad. Yesterday I was really fatigued because I had done 3 days of 2 dives this week and knew I hit the wall when I felt it coming on in the morning after the 3rd day.
I have been feeling well on two separate occasions and thought I would skip an enema and sure enough it made a difference. That's why I like to journal because it reminds me of the good and bad, what works and what doesn't make a diff so I can stop if needed.
It does take time to commit to them but I have to say it is the main reason for me that I can do daily dives and sometimes 2 per day.
The detox mentioned above has really helped the aching in my armpits, but have to do it 2 times per day to clear my system.
I didn't mention in the video that if I do to much my body does fatigue because it will take time to build my stamina and endurance back from the years of illness. But to much to me is walking 3 miles, cleaning the house and going to a social event in one day.
Today I walked 1.5 miles, road motorcycle for an hour and went to a friends BBQ and I'm doing really well still. We plan on a 200 mile ride tomorrow.
Posted by mbdq (Member # 26277) on :
Hiya diving crew! Good reporting PEImomma- glad you are seeing such great improvements!
I am here to report that I have reached 420 hours of mhbot. I continue to slowly but surely see improvements. I have less symptoms and the symptoms I have are less severe. I have improvements in mood, energy, passion for life, exercise tolerance, neuro symptoms, pain and PMS.
My changes have been very slow, very up/down and very hard-earned. I am sure some things I have continued to do (work fromhome, travel when necessary, not say no enough, etc) have hindered my progress but they are all part of my learning and journey! Being on a gut healing diet -GAPS- has been key.
Other good news is that my hubby who was also using hbot for lyme is now feeling great. He is not currently diving because he feels so good. His LLMD said his next step was IV and we have completely avoided that with diet, exercise, hbot and herbs. He is another one that pushes himself too hard- I am always on him to rest and try to slow down.
So thats it for now. Will post again at the next milestone. Best wishes to all.
Posted by CD57 (Member # 11749) on :
up - fantastic!
Posted by Haley (Member # 22008) on :
I have a question on exercise.
I looked back through some of the posts and saw that Phoiph didn't exercise for a year, BUT she says that she did Yoga regularly. Phoiph, How often did you do Yoga?
I am doing better, but still have lots of fatigue and weakness. I'd like to work some exercise in, but don't know if I have the strength to even do Yoga.
I can see that Peimomma is kicking butt with exercise.
What about others here, what are you doing for exercise?
Posted by Phoiph (Member # 41238) on :
Hi Haley...
I hadn't been able to exercise for the last 7 out of 8 years of my illness (although I had done yoga for several years and been a runner for 17 years pre-Lyme).
To answer your question, I looked over my log, and determined that I started gentle yoga (2x per week) about 4 months after I began mHBOT.
I recall having the sensation that I had, in many ways, become disassociated from my body in an attempt to cope with the constant pain and bizarre sensations, and yoga was instrumental in helping me reconnect with my body.
At about 6 months, I started walking regularly. I also tried to do as much yard work, etc., as I could, although at that time, it was still a huge challenge. I was very motivated to be outside, however, after being homebound for over 5 years.
I think it is very important not to overdo it, especially with aerobic exercise before you are ready. Your body has a lot of healing to do, and it requires energy and rest.
It is important to improve breathing, circulation, energy and lymph flow, however, and gentle yoga is a great way to start.
With yoga, there is no competition or judgment; you only do what you can on that day, in that moment. The benefits are amazing.
My recovery was based on 3 basic elements: daily mHBOT, nutrition, and gentle movement/exercise. I don't believe I would have become well if any one of those elements had been missing from my protocol...
Posted by Haley (Member # 22008) on :
Thanks Phoiph.
I'm going to challenge myself to do a bit of exercise.
Not sure why I am so weak and fatigued.
I know that it is important for the lymph system to move this junk out of the body.
Posted by Phoiph (Member # 41238) on :
Haley...
What does your (entire) protocol look like (i.e., what are you doing/taking in addition to mHBOT, and what is your mHBOT schedule)?
Also, diet, water intake, etc.
Posted by Haley (Member # 22008) on :
I drink 2 or 3, 33oz. bottles of Kangen water a day (usually 9.0 ph).
My diet is primarily Paleo, I eat 3 moderate meals a day. I was also doing 32 oz. of green juice (which is 3 cups of water blended with raw fruits and vegetables) a day, but I'm cutting back on the green juice. No sugar.
I am doing the Cowden protocol, so I am taking some herbs, but I had this fatigue and weakness before starting those herbs.
I don't take too many supplements these days other than Magnesium, I'd like to start iodine, but am waiting on test results.
I know that it is vitally important to have the lymph system moving, but I don't want to be to exhausted to work, I still have to work even though I work from home some days.
Posted by Phoiph (Member # 41238) on :
Haley...thanks...what is your mHBOT schedule?
Posted by Haley (Member # 22008) on :
I do 1 hour a day with supplemental oxygen, but I have been taking off one day a week for the past 2 to 3 months.
Any tips would be appreciated Posted by Phoiph (Member # 41238) on :
Haley...
Just some thoughts...
1. About the water...I am concerned that the higher alkaline PH over time could cause issues.
It can raise the alkalinity of your stomach, which may reduce the acidity enough to impair digestion/absorption of nutrients (especially protein) properly, and may cause deficiencies (including mineral) over time. Lower stomach acidity can also provide an avenue for pathogens to enter, and cause imbalances in good bacteria. I have also read that it can be harder on the adrenals.
I know there's a lot of controversy over the water issue, but the stomach PH is definitely concern, because it involves absorption.
2. I agree with your decision to reduce the (raw) green juice for now...and it may be beneficial to replace it with cooked vegetables instead.
3. Some people on a paleo-ish diet need to add some (healthy) carbs from time to time for energy...like quinoa, for example. (It is best not to combine starchy carbs and proteins in the same meal, however.)
4. Have you tried doing your mHBOT sessions before bedtime? Since it raises your cellular metabolism, it can be a little like exercise to the body, which causes some people to feel sleepy afterward. Others can find it stimulating though, so it varies among individuals.
5. If you do start exercise, I would do yoga, not aerobic at this point.
6. How is your thyroid function?
Posted by FromTickToPicc (Member # 45683) on :
Is anyone here doing HBOT *with* a PICC or Port and IV meds? If so, I'd love to hear more about your experience and if the dual approach sped up the recovery process at all (and what meds, etc., you were doing by IV). Thanks!
Posted by Haley (Member # 22008) on :
Thank you so much for your reply Phoiph, it's so helpful to have some guidance through this process as there really is no one to go to.
Yes, I could cut back on the 9.0 and the green juice, I understand the concern. I only drink it between meals, but I understand what you are saying. Some people drink 2.5 with their meal and the more alkaline on an empty stomach. But I'll stick to clean water. (just trying to get my $5000 worth from that machine )
I can't eat Quinoa, but could look at some other carbs. My body just doesn't like Quinoa. I think I overdosed on it when I did a Vegan diet.
I usually do my mHBOT in the evening after work. I am going to try some yoga classes.
I just had a ton of tests run by an endocrinologist, I see her on Friday to get the results. She should be able to tell me if my thyroid is off.
FromTickToPicc - I had a port in my chest while doing mHBOT, but just recently had it removed. I have not done any IVs while using my chamber other than Heparin. You should give it a try. IVs took me from my death bed, others here don't think pharmaceuticals are useful.
Posted by FromTickToPicc (Member # 45683) on :
Hi Haley, it's actually great to hear about your port and doing mHBOT with it, as I just got a PICC so am a newbie with infusing meds, and I actually did a single session of super mild HBOT since getting the PICC but want to do more in a more organized way, so I'm trying to find out how to make that possible. I think for me if I can manage the herx I want to combine the two as much as I can. Are you doing heparin for babesia?
Posted by Phoiph (Member # 41238) on :
Hi Haley...
Hopefully your endocrinologist is integrative-oriented and performed the more in-depth testing for thyroid, etc., as many don't...
Also, as you probably know, some give wide latitude for interpretation as to what is within "normal" range.
Good to know that you can always have a second opinion/interpretation on the results from a naturopath or integrative medicine doc., etc., if you still have questions.
Also...could you clarify your comments to TickToPick for me...are you saying you had your port in while doing mHBOT (recently removed), but didn't infuse anything but heparin during that time?
Thank you!
Posted by Haley (Member # 22008) on :
Hi Phoiph,
I believe this doc does take a holistic approach and knows which tests to take, this is her website http://www.centerforhormonalhealth.com. Would you remind me which are the best tests for thyroid? I see her on Friday to discuss the results.
Do you take thyroid medication?
I have had a port for a long time. The Heparin was used to clear my line once a month, I was not using any IV meds while in the chamber. In fact I have not used IV meds for a while. I considered doing one last round of something like IV Artemesia before pulling my port. I was apprehensive to have it pulled because I am not well yet, at the same time I thought it may be hindering my achieving wellness because it is a foreign object in my body.
TickToPick - I did consider doing the Heparin for babesia, but didn't know if it was a good idea with the mHBOT. I didn't want to get an embolism (although nothing really phases me these days Posted by Phoiph (Member # 41238) on :
Thanks, Haley...that is what I thought you had been doing.
I was concerned that FromTicktoPick may have misunderstood you to be doing IV infusions and mHBOT simultaneously, so wanted to clarify.
I looked at your doctor's website...impressive! You are fortunate to have found an integrative endocrinologist! It looks like you are in great hands.
There are 6 main thyroid tests: TSH, T3, T4, Free T3, Free T4, 2 antibody tests, and Reverse T3. There are also nutritional deficiency tests that can be done. Adrenal function should also be considered.
Many non-integrative docs will just do the TSH, but it doesn't always reveal "subclinical" thyroid issues, so many are missed.
To answer your question, I am not on any medications. I was on T3 for a few years early on in my illness, but had stopped it (along with all therapies(except for homeopathy), meds and supplements) about 5 years before starting mHBOT. Although I still had symptoms of hypothyroid, I had become very reactive to all medications at that time. I have no symptoms now.
Just something to be aware of...mHBOT can potentiate the action of certain thyroid meds. Some people have been able to reduce or go off of their thyroid meds once they have done mHBOT for awhile.
Keep us posted on your test results...
[ 10-05-2015, 05:49 PM: Message edited by: Phoiph ]
Posted by Haley (Member # 22008) on :
Thanks Phoiph. I will make a note of those tests.
Hope that we can catch up soon.
Posted by FromTickToPicc (Member # 45683) on :
Thanks for that clarification, Haley, I get it now : )
Do you think an embolism would be a concern if one is using heparin flushes twice daily with a PICC (which is standard) while infusing? I hadn't even thought about that risk. I know with a port you likely weren't using it much if it was just for flushing and you weren't on meds then.
Posted by FromTickToPicc (Member # 45683) on :
Also, Haley, I'm really curious where one gets IV artimesia. I read about Dr. Z. (Lyme TCM guy) using IV garlic (in a purified, liquified form I assume) but my understanding was it was nearly impossible to obtain in the US.
Posted by Haley (Member # 22008) on :
Hi Ticktopick. You should really ask your doctor about the heparin and embolism. Many people have done IVs along with HBOT, so I don't think it would be a problem. It came to my mind because of some of my symptoms. I have had times that I felt I was having a stroke, so I felt that the heparin would not help that.
IV Artemesia is very rare. I heard that there was a place in Los Angeles that carried it, but I had my port pulled and never looked into it. I first heard about IV Artemesia at a medical conference. It's usually used to treat Malaria.
Are you using a hyperbaric chamber?
Posted by FromTickToPicc (Member # 45683) on :
Yes I just started using a home chamber, along with my PICC/IV meds, but I have not worked up to much time or full pressure yet, so trying to figure some details out first.
I actually did find some sites in China years ago from where one could import IV/injectible herbs (I wanted to inject), including things like houttuynia (for bartonella) and prob. artemesia, but it didn't seem safe to do . I think if one had a safe source, though, it might be possible to import -- like you, I didn't pursue it all the way and just stopped then.
Posted by Monti (Member # 45718) on :
Hi mhbot users,
I just finished reading this thread from beginning to end. PHEW! It took a few days.
I have had Lyme for 8 years. I wasn't accurately diagnosed until 6 years into it.
So for the past 2 years I have been trying various of Lyme treatments including oral abx, cowden protocol, and most recent Zhang protocol which I am still on.
I have not made any real gains while treating Lyme but I have seems to stop getting worse which is a wonderful thing. I would describe myself at 30% of what I should be with ups and downs.
So a couple months ago a friend of mine was at his chiropractors office and asked the doctor what that chamber was. Turns out the doctor had chronic Lyme and treated himself with the mhbot.
He also has treated about a dozen others with Lyme. Everyone has seen noticeable gains from this treatment except for one person who would commit to healthy eating etc.
So with such encouraging odds I decided to buy a chamber and I am now on my 12 dive.
I have noticed with each dive I am extremely tired afterward. Also by dive 5 I started to feel exceptionally poor and began to feel that it was a herx although it was more gradual and different then the herxing I have experienced with abx.
Anyways I just thought I would introduce myself and let you know my story.
I appreciate all that have chimed in and offered info about this subject. Although I didn't find this until after I began diving it had been useful seeing how others are doing on this. And a special thanks to Phioph for taking the extra time and effort to help lead the way.
Monti
Posted by Legolas (Member # 45737) on :
Hi,
I've just read this topic about mbot and lyme disease. First of all thank you all for your willingness to share your experiences with others. I'm interested myself in trying the mhbot therapy. I'm diagnosed with lyme and Bartonella, having symptoms for more then 10 years now. I've improved signifcantly in the last 2 years with the samento/banderol/cumunda protocol. But i'm still far from recovered. Maybe adding mhot can speed things up.
I hope someone can help me with the following question.
If i understand correctly, an oxygen concentrator with mask should be used. How exactly do you connect an oxygenconcentrator with mask to the chamber? Is it strong enough to blow against the pressure? Doesn't it create some kind of leak? It's hard to find proper technical information on the net about this. I've looked at some Oxyhealth models but there doens't seem to be some kind of specific connection in the chamber for this.
Many many thanks in advance.
Greets
Legolas
PS: Phoiph, your inbox is full.
Posted by Phoiph (Member # 41238) on :
Hi Monti...
Welcome...I just replied to your PM...
Posted by Phoiph (Member # 41238) on :
Hi Legolas...
Thanks, I just emptied some PM messages.
Regarding the oxygen concentrator hook up...
A home chamber must be sold separately from an oxygen concentrator in the US (FDA Regulations), otherwise, the combination would place it in a different medical class.
This is why you likely won't see instructions on the internet on a manufacturer's website as to how to hook the two together.
That said, the FDA doesn't regulate how doctors prescribe or use equipment, and many doctors prescribe the use of both the chamber and oxygen concentrator together. This is perfectly legal, providing one has a prescription to purchase both units (separately).
To answer your question, you must purchase an oxygen concentrator that has enough PSI (pounds per square inch of pressure; the one I recommend has 20 PSI) to counteract the backpressure from the chamber. Then you must be sure to set the LPM's (liter's per minute) correctly (this differs a little between models).
There is a port on the chamber which the tubing from the concentrator slides through, and a mask is attached to the tubing on the inside of the chamber. There is a hook-up kit available with some simple hardware for this purpose.
Even though you are in Europe, if you decide to buy a new or used chamber, you can take advantage of the discount through the "Free Radical's Hyperbaric Project" I have been working on. If you're interested, you can PM me, and I will send you more information.
Posted by Peimomma (Member # 45177) on :
Hi All, thought I would give a little update as things change every few weeks. I just finished dive 130 today but I don't plan a video until the first week of June as I would like to report on an Alaska trip I have planned and a 5k walk.
Mbdq, thank you for your update. This seems like such a lonely journey when you are in the beginning so it's nice to have others post that are further in the process and feeling well.
Haley, I can't believe you are working....that's great. How do you fit it all in your schedule? haha
After my last video I had two weeks of steady herxing so I adjusted a few things. I've gone down to one coffee enema a day because it seems my body is doing a fine job of detoxing on it's own finally. I don't have a full or toxic feeling any longer. I've also started walking more to get a little sweat going. My goal this last week is 10,000 steps a day M-F and rest on the weekend.
I walked more than 10,000 steps all of last week, and then road motorcycle with hubby over 350 miles this weekend. I'm feeling great today and already have 9,000 steps by noon today. No joint pain or fatigue.....YIPPEEEEEE
I plan to add a light yoga in this week for some stretching and strengthening.
The lows are a bit hard to get through but totally worth getting to the other side and feeling a little better than before the herxing.
Welcome to all the new mHbot'ers. I look forward to reading as you post your progress. Would love to see some videos...lol
Posted by nikkabelle (Member # 43604) on :
CD57...are you active still on here? Can I ask you a question??
Posted by CD57 (Member # 11749) on :
Of course, Nikka, what;s up?
Posted by Monti (Member # 45718) on :
Thank you Phoiph.
On dive 13 as we speak. So far it seemed that around dive 5 I started herxing.
Symptoms were light sensitivity, extremely tired, weak, dislzzy. Oh and brain fog.
Around dive 10 it began letting up and thought I was over the hump. Yesterday I discovered my 02line was loose and had been getting looser and looser the past few days.
So now I am back on a good flow of 02 and find myself wondering if the dreaded herx will return. I have a feeling it wasn't done with me and the lack of pure 02 stopped it early.
Posted by Phoiph (Member # 41238) on :
Monti...
I always suggest that people who have Lyme and/or toxicity start very, very slowly, and work up to the full hour under pressure (1.3ATA/4.2PSI) with 02 daily.
For example, in your case, if you are already up to full pressure, you could do 20 minutes at full pressure for a week to 10 days, then, if you are doing OK, add 20 more minutes for another week, then the final 20 minutes. Some (many) people will need to go more slowly.
Although it is definitely a 2 step forward, 1 step back process of peeling layers, I don't feel that strong Herxheimer reactions are particularly good for the body.
In my opinion, it shows we are trying to rush things more quickly than the body can handle, and it is showing signs of "overwhelm". This sets up a stressful, rather than a healing situation....
What is your protocol (i.e., frequency, pressure, time, LPM,), and what kind of equipment are you using?
Posted by Monti (Member # 45718) on :
Hi Phioph,
I bought a used summit to sea "dive" (28") and it came with a OG15 concentrator. I got a great buy on it for $6,000 and it was only lightly used. The concentrator isn't what I would have chosen but it came with the deal. It is rated for 12 psi at 7lpm. It seems to push plenty of 02 into the pressurized chamber.
What I have been doing was an hour a day with 02 seven days a week. I am more then willing to cut it back some if you feel it might be easier on my system. The herx I dealt with was really rough.
I would rather go slower and build up (avoiding some of the extreme fatigue etc) if it didn't take anything away from the end result.
I eat very healthy. Whole foods, organic, no sugar or grains. I do eat some dairy though.
I have done very little abx. I was on cowden for a year and then switched to Zhang for the last 6 months.
Posted by Phoiph (Member # 41238) on :
Monti...
In my opinion, it would be better to start more slowly, as I mentioned, and work up to the full hour (at full pressure w/O2 daily) over a period of time (consistency is key!).
If anything, it will make the process go a little more smoothly, and you will still benefit from the treatment as you work up.
Also remember to increase your water intake to stay hydrated.
This treatment is very powerful, and often underestimated!
Posted by Phoiph (Member # 41238) on :
Nice, Peimomma!
Posted by Monti (Member # 45718) on :
Phoiph
So at this point since I've done about 13 dives at 1 full hour with 02 should I cut back to something like 30minutes each day? And do that for a week and see how I feel? Or two weeks?
Thank you!!
Posted by Phoiph (Member # 41238) on :
Monti...
In your case, since you are already up to full pressure, you could do 20 minutes at full pressure with 02 daily for a week to 10 days. Then, if you are doing OK, add 20 more minutes for another week to 10 days, then the final 20 minutes.
This way, you are working up to the full hour over the course of about a month. You can go more slowly if necessary (some people need to go much more slowly than this, some don't), while working toward the goal of the full hour under pressure with 02 daily.
Remember that you are still benefitting while working up...and you can tweak your protocol during this period if you need to, but once you are at the full hour, try to remain as consistent as possible...
Posted by Monti (Member # 45718) on :
I will do that starting tomorrow Posted by Haley (Member # 22008) on :
Welcome Monti. That is great to hear about the Chiropractor with the 12 patients!
So great to see all of the feedback here.
CD57 - how is the diving going?
Peimomma - you go girl!
Phoiph - I didn't even know that the concentrator had a PSI, I have no idea what mine is, but i think it is a good concentrator. It's 10 LPM.
Posted by Phoiph (Member # 41238) on :
Haley...
If I recall, you have an AirSep New Life Intensity 10....is that right?
If so, it is 20PSI, and you should have it set to 8.5 LPM, and leave it there...turning an AirSep too high when used with a chamber will put it into an oxygen-on-demand mode, which you don't want for our purposes.
It is a great concentrator.
Check and see and let me know...because if it is a different manufacturer, you may need to set it differently...
Posted by Haley (Member # 22008) on :
Yes Phoiph that is the concentrator I have, which is set at 8.5. What is oxygen on demand? Also do I need to clean the filter? I've checked it, it looks perfectly clean so I don't mess with it.
Posted by Monti (Member # 45718) on :
Haley...
Thanks for the welcome
Phoiph...
You have said once I hit an hour a day I would want to be consistent. I do have one concern about that. We are going away for a week in July and I won't be able to bring my mhbot with me. Is that going to be a problem?
Or is the "consistency" that you spoke of more about doing this for a long time aka years. I do plan on doing this long term.
And by the way I really liked what you said about starting slow and not putting your body under stress by hitting it hard at first. That makes a lot of sense especially with this type of treatment. It's about healing.
Oh and one other question. Is it that mhbot can make you dehydrated or is it that it's important to stay hydrated to help flush toxins?
Posted by Monti (Member # 45718) on :
One last general question. I am new to lymenet and haven't yet figured out how to be notified when someone makes a post on this thread. Can that be done?
Posted by Survivorgirl1 (Member # 44031) on :
Hi all! I keep having trouble logging in to this forum, it says it has to do with my IP!
Welcome new divers, Monti, Nitsuj1225, FromTickToPicc, nice to read your posts! Please do take it a bit slow and steady… Lots of info is in the book The Oxygen Revolution, it’s mainly about hbot, but also a bit about mhbot, it has been a great help to me.
Peimomma, very nice to read your updates and see your videos! Mbdq, Looking4hope, Haley, thanks very much for your posts and updates! Phoiph, thanks for helping out! Monti, a break for a week is no problem, just enjoy your holiday! You can get notification emails when you post a reply and scroll down and check options: email notification.
Legolas, I read you live in Belgium, maybe this is of some help: There’s e.g. an online store in The Hague in The Netherlands that sells the 10L Oxygenconcentrator. The Summit to Sea chambers are possible to be partly shipped to you from France instead of from the USA, that will save you much money in shipping costs, custom duties and taxes instead of importing one such as Oxyhealth from USA to Europe. There’s a nurse in Germany that can help with that. http://www.ueberdrucktherapie.de/index.php/shallow-dive.html
Phoiph, this nurse would love to have your email-adress and get in contact to share success stories and in case someone asks her about Lyme disease and mhbot she can direct them to you. If you like, can you contact her through her website?
Next comes my update…
Posted by Survivorgirl1 (Member # 44031) on :
My update.. I’m still reading along in this threat and still diving, for about 10 months now! I use a Summit to Sea ‘Shallow Dive’. With a 10L Intensity Oxygenconcentrator. I’m on 100-120 hours. One hour a day seemed to be too much for me, that’s why I do 30 minutes a day, 6 days a week. To me for now that seems perfect. On the day off I use lots of anti-oxidants.
I had a 6-week break, due to a stomach infection. I still don’t know exactly what it was and I don’t know if it was promoted by mhbot.
I have improvements… they are small, but to me they are very big because I was more dead then alive when I started. (I wrote a few posts on page 7 and 8) I’m very happy with my chamber, it gives me much support!
1. I have no more migraines at all, except I had one on my 6-week break, 2. My blood flow is better I feel a bit warmer and a bit less dark circles under my eyes, 3. Pain and restlessness in my legs is a bit less, 4. I feel less 'toxicated', 5. Energy and strength a little bit better (but still bed ridden), maybe because of improved mitochondria, 6. My bowel-function is a bit better and 7. The mhbot together with cholestyramine has given me a little bit improvement in MCS-symptoms.
I’ve added abx now, I couldn’t tolerate it before, but now I seem to do so and I have some little improvements from it. I had tried herbal protocols with minimal results.
Thank you contributors on the internet for sharing experiences! Wishing you all very much progress and health!! Good luck and keep breathing!
Survivorgirl1
P.S. I don’t know when I can update again because of trouble getting logged in to the site. Please webmaster if you read this reply my email.
Posted by Phoiph (Member # 41238) on :
Haley...
Oxygen-on-demand is an "intermittent", or "pulse-dose" mode the concentrator goes into when it is set very high to conserve oxygen...it senses when the person is inhaling and sends oxygen at this time rather than continually.
Setting the AirSep model at 10 when using it with a chamber (since it has to compensate for the backflow pressure of the chamber) will put it into this mode. This is why we set it at 8.5.
Different models, like the Sequal Integra, however,doesn't have this function, so that model should be set at 10LPM. The meter will drop to around 8.5 as the chamber inflates and the backpressure causes it to work harder. The LPM dial should not be reset at that time, just left as is. It will bounce back to 10 as the chamber deflates.
Survivorgirl...I will certainly contact the nurse and give her my website (still under construction) address and email (she can contact me through the website also). Thanks for making that connection!
Also, thanks for the great information about options for obtaining a chamber in Europe. My advice to Legolas would be to compare costs WITH discount included via Oxyhealth just to be sure before making a decision (Legolas can PM me for info.), as the discount may be enough to offset costs. There are also differences in the 2 manufacturers to consider...
I will PM a moderator to let them know you're having trouble logging on...
Posted by Phoiph (Member # 41238) on :
Monti...
Drinking more water helps you flush out toxins, although oxygen can also be a little drying to your nasal passages and throat.
About your week vacation in July...I am very conservative about taking time off, especially in the first year, but since you already have this vacation planned, I would just enjoy your trip, and get right back to your mHBOT as soon as you return.
Sometimes travel can't be avoided, but an option in the future might be to take your chamber with you (without the frame, mattress, & bolsters) if traveling via car. Always make sure the concentrator travels upright, and is cushioned well...
Posted by Monti (Member # 45718) on :
Survivorgirl1... Thanks for the welcome and info. I guess I needed to use the "full reply" instead of the quick reply to see the email option.
Interesting that the one headache you had was during your break from the treatment.
Phoiph... Thank you again for the help. Upon my return after a week off should I resume my dives at the same level I had been doing prior to leaving or should I build myself back up again?
Posted by Phoiph (Member # 41238) on :
Monti...
By that time, you will be up to full pressure/time, and should be able to resume at the same level...
Posted by Monti (Member # 45718) on :
Thanks Phoiph
One more question for ya. I think I saw a post where you said to have the 02 mask on as you are pressurizing. I'm not able to do that and still equalize my ears since I need to pinch my nose and blow. How important is it to do this?
Posted by Phoiph (Member # 41238) on :
Monti...
You are right...you need to have the mask off when pressurizing so you can equalize your ears.
It is more important to keep the mask on when you depressurize...
Posted by Phoiph (Member # 41238) on :
Haley...
I forgot to answer your earlier question about cleaning the filter on your concentrator.
Once every 2 weeks or so (more often if you have a lot of dust or pets), take the nylon filter off the back, take it outside and clap it between your hands to get the dust off, then put back in place.
Every couple of months or so, take the filter off and wash it in warm, soapy water (dish soap); rinse well and air dry thoroughly overnight, then put back in place.
Posted by Haley (Member # 22008) on :
Thanks Phoiph . Will do.
Carry on mHBOTers.
Posted by Peimomma (Member # 45177) on :
I had a BANNER week!!!!
Phoiph don't cringe when you read this😉
I walked over 10,000 steps each day M-F, 3 days of yoga and rode 600 miles this weekend and I'm feeling great😍. slowly building the stamina and endurance. I think the heat while riding still bothers me but maybe with time that will improve also.
I finally cut out the sugar😒 so that probably helped too....lol
Posted by Phoiph (Member # 41238) on :
I'm cringing happily for you, Peimomma... Posted by Pam08 (Member # 19203) on :
That is fantastic news Peimomma!! So happy to see your progress. Were you able to be active at all before you started the mhbot?
Posted by Peimomma (Member # 45177) on :
Thanks Pam08.
I was at about 30% when I started the mhbot treatments. I was pretty much house bound except doctor appointments and a few local outings. I was feeling so poor that I was ready to go on IV antibiotics because I just didn't know what else to do as I have tried several therapies with little success.
I would say I'm at 50% now and improving every week. If you haven't watched my Youtube videos you can find the links on page 9 of this thread. There are 4 and have documented my journey leading up to choosing mhbot, improvements and struggles during treatments.
Posted by Peimomma (Member # 45177) on :
Thanks Pam08.
I was at about 30% when I started the mhbot treatments. I was pretty much house bound except doctor appointments and a few local outings. I was feeling so poor that I was ready to go on IV antibiotics because I just didn't know what else to do as I have tried several therapies with little success.
I would say I'm at 50% now and improving every week. If you haven't watched my Youtube videos you can find the links on page 9 of this thread. There are 4 and have documented my journey leading up to choosing mhbot, improvements and struggles during treatments.
Posted by Monti (Member # 45718) on :
Peimomma...
That is both impressive and encouraging. I would describe myself at 30% currently. I am sure 50% must be a wonderful wonderful thing. And you are just starting Posted by Peimomma (Member # 45177) on :
Monti I just completed dive 138 this morning😊. I began treating 1 Feb 2015.
My husband and I were talking about prior to treating with mhbot and how if I had ridden for 50 miles or more I would have been down for 3 days recovering. I was back at my 10,000 steps yesterday and yoga, what a difference some O2 makes.
Posted by Monti (Member # 45718) on :
Peimomma...
It's amazing how fast you are recovering compare to others using mhbot. I think you are the exception.
I am so ready for this. I am on my 21st dive but I reduced the time from the full hour to 20 minutes about 5 dives ago.
Phoiph suggested I start off easy and build up to avoid putting myself thru unneeded misery. That was wonderful advice.
I think I am on the verge of upping the dive time to 40minites since at this point the only issues I am having is some very mild light sensitivity which I am 100% sure is caused my mhbot.
I can't wait to experience my first step forward. I've been 8 years stepping backwards. I am so ready.
Posted by Peimomma (Member # 45177) on :
Monti I did what I would call "prep therapies" prior to finding mhbot which is why I believe I have done so well. Even though none of them got me to a point of functioning I think they kick started my immune system.
The pain, fatigue and brain fog were the symptoms I couldn't see any improvement until mhbot. My gut issues and migraines were much better after having Chinese herbs specifically made for me in fall of 2013. My sleep and pain were somewhat better but not to the point of restful sleep or pain free if I tried to do any sort of activity.
If I exerted myself at all I was down with pain off the charts. In January I attended a ladies event for about 2 hours one evening just sitting and was down for a week. The fatigue was so bad I would take a nap around noon each day and was in bed early but still felt tired in the morning.
I think I had less going on outwardly then most on this board starting out. I still had issues like losing my eyesight and dental issues that hadn't improved until my mhbot treatments. Now I know from the doctors my eyes and teeth are improving, my next step is to visit with my LLND and have my numbers and tests run again from last year to see if those have improved.
I think that is great that you are getting ready to move up to the next level. It goes by fast and soon you will be at 100 treatments. If you aren't keeping a journal I would recommend doing one because it helps you look at how you feel each day and put it in words. I write if I'm tired, woke up, no pain, whatever I'm feeling so I can look back. You will be surprised at the progress you are actually making.
There is a young man in my area that just started treating and his mom said he enjoys going in the chamber because he has much less pain while he's in there after just 5 dives. But when he gets out the pain comes back. Small progress like that gives us hope that our body is healing. It just takes time and like you, I wanted it now because I've been sick for so long.
I know to you I probably sound normal but When I hear my sister is working a day job, a par time night job, baking cakes for money and helping with little league baseball I feel like I am just scratching the surface.
I like seeing others post because it gives me hope that I will be at work in the future and living normal again☺️
Posted by Monti (Member # 45718) on :
Peimomma...
I may have a reasonably fast recovery too then since for the past 1.5 years I have only been treating with healthy approaches like Cowden, Zhang, and I have been eating very healthy for a few years. My abx treatments were oral and brief and 1.5 years ago.
Since then it's been similar to you in some ways since its been more about healthy eating and things that didn't damage my body.
My primary issues are severe fatigue and at times severe brain fog. I have managed pain over the years by eliminating inflammatory foods. For me grain seemed to be the worst one. Prior to eliminating it I had lighting bolts of pain in my body along with joint pain.
So your post continues to be encouraging for me as were/are your videos.
50% compared to 30% is incredible but still a very long ways off.
Posted by Haley (Member # 22008) on :
Peimomma - sorry if you already posted this.
What did you do to get your gut in shape? I know you did enemas and that you took an herbal supplement. Do you think the enemas were key in getting the gut repaired?
Posted by Peimomma (Member # 45177) on :
Haley I started seeing a Korean acupuncture doctor that also cooks up Chinese herbs specific to each person. He gave me two month of that and now I can eat everything again with no worries of dashing off to the restroom or vomiting.
I used the enemas to detox the liver and am back down to one a day as my body has finally kicked in and started doing the work. I can tell this from the smell of my armpits. I don't use deodorant and when I'm toxic the pits are really smelly. Now I can exercise and go the entire day and have just a little smell.
I learned to listen to my body during 6 months of massage therapy school 15 years ago.
Posted by sheminesque (Member # 45770) on :
I have an AirSep New Life Intensity 10 concentrator 20 psi with an oxygen monitor that will sound an alarm if you ever go below 90%. I bought it last year and it only has about 50 hours on it. I didn't use it much. It works perfectly. It had a five year warranty, however I just called and the warranty is only for the original owner.
I have received some PM's and will give details on there, too. It cost me $1300 originally. I didn't keep the box and foam insets (my bad, I know) but I can order them again for safe shipping via UPS ground.
[ 05-15-2015, 11:48 AM: Message edited by: sheminesque ]
Posted by sheminesque (Member # 45770) on :
PS I got it to help with fatigue and migraines. Oxygen is known to help cluster headaches. However, I got rid of my migraines by drinking coconut water kefir and using apple cider vinegar.
Posted by A.G. (Member # 44713) on :
Just started at my PCP's office last week. I don't know what to expect.
But he charges way too much per visit. I hope to lease one? if all goes well with the treatment.
Posted by Phoiph (Member # 41238) on :
Hi A.G...
What is the protocol (i.e., pressure, O2%, duration and frequency of your dives)?
There are several lease options...you can PM me and I will send you a summary.
Posted by A.G. (Member # 44713) on :
Have no idea what my protocol will be. My PCP's ND is weaning me up to an hour. I've only had my 1st visit of 5 minutes.
I had an oxygen tube in my nose as well. She had me chew gum to help with the ear popping.
I suffer from intense neuralgia and myalgia. I was in pain before I got into the plastic chamber. During the session, I was pain free.
Posted by Peimomma (Member # 45177) on :
Hello mHBOTers,
I've been out enjoying the great state of Alaska on vacation. I rode a mountain bike for the first time in 9 years, off road, up and down hills through sand and rocks. The first day as a warm up I biked 2 miles.
Then I completed what I call a 2 day triathlon, I hiked 2.5 miles, kayaked 5.5 miles and mountain biked 7.5 miles. It was fantastic😍. There were so many other activities, mushroom picking, enjoying live music, tasting my first beer and so much more.
Arrived home Tuesday ready for some O2. Therapy. I had one day to rest before a friend came to visit for two days. We spent Thursday in Seattle at Pike Place Market, the Aquarium and rode the Great Wheel. Yesterday we drove to Mt Rainer and found a few waterfalls and took in the beauty of the mountain.
Today I'm resting😏 Next Saturday is my 5k walk and I will record my update video at the finish line.
Posted by Peimomma (Member # 45177) on :
I forgot to mention, last night was dive 150🎉🍺🎈😁
Posted by SLML (Member # 42986) on :
Awesome!!!!
Posted by S13 (Member # 42830) on :
Great to see people making progress with mhbot!
Ive decided to give mhbot another chance. Last year i gave up because of lack in progress. This year i am again going all natural, no abx, no supplements. I was terrified to stop abx however, because rifampin kept me mentally stable the last 9 months or so.
This time i decided to do the GAPS introduction diet, which i think is something similar to what phoiph was doing. And i must say, that makes all the difference! Now even without abx i remain mentally stable, not regressing at all. I was important though to leave out vegetables (fiber) for now, because i think that was just feeding bad bugs and causing toxins in my gut. So its a lot of broth im eating. In conjunction with GAPS intro, im also doing intermittent water fasting. The writer of the GAPS diet actually suggests this for people who's detox system is derailed. The detox days are horrible, but well worth it. Im actually underweight and malnourished already, so water fasting was a bit of a gamble. But with this intermittent fasting im pleased to say im no longer losing weight, and the nausea is getting less, yay!
I feel a major source of my bodies toxicity is from bad bugs in my gut. So the diet and fasting helps. But im also suspecting i have Ileocecal Valve Syndrome, which causes colon toxins and bacteria to spill over in to the small intestine (where they are absorbed in the blood). So im hoping i can correct this problem over time and Mhbot can be of assistance i hope.
Mhbot also keeps pain levels very low (hardly noticable), so its doing a good job of keeping borrelia suppressed. On abx i had no pain at all, so mhbot is not as effective as abx, but at least it gives me a chance to restore my gut and get to the root of the problem.
TBC.
Diving 215 hours and counting!
Posted by Kaibyrd (Member # 45606) on :
My doc mentioned this at my last visit but I have claustrophobia and the thought of doing this scares me to death. Has anyone here had to overcome this fear?
Posted by Haley (Member # 22008) on :
S13 I'm looking forward to seeing your progress. I also have not felt the oxygen alone is enough to take the infection down. I have decided to do a short course of antibiotics intermittently and hope that at some point my body will be strong enough to take over.
We all have different levels of illness, some people may not need antimicrobials, that doesn't mean that is the course for everyone.
I know that the oxygen has significantly improved some of my symptoms, however maybe I have more obligate aerobic bugs (the ones that thrive on oxygen) and less obligate anaerobic bugs (the ones poisoned by oxygen). I still have faith that the human body is an amazing machine that will come through in the end and that overall the oxygen is helping my body recover.
Peimomma, that is amazing recovery. So happy that you are feeling strong!!!
Posted by Peimomma (Member # 45177) on :
Kaibyrd,
I did overcome my fear but still have a few freak outs if I don't have a fan going in the chamber. Once I got in, zipped up and started telling my husband to unzip me...lol. For whatever reason if the fan is blowing on me I'm fine, maybe it tricks my brain into believing I'm on a beach...haha
I would first try a big chamber or as big as you can, take your phone or iPad in with a Netflix movie ready to watch, it totally takes your mind off the space. There are windows but that doesn't mean much to those that deal with claustrophobia 😊. I had the lady or someone you know stand at the window and talk to me at first and just remember, you are breathing O2, like that helps right?
Posted by Peimomma (Member # 45177) on :
Thanks Haley!! You are so right, we are all at different levels with different bugs so the healing is a process. I believe my prep move has moved my recovery along at a nice clip but not ready to attempt work yet as I know that is not within reach for now.
Slow and steady is what Phoiph continues to remind us all as we journey on. Consistency is so important she says....so even when I just don't want to chamber cause I hate Lyme, I do it anyway.
Try journaling if you aren't, it shows me the baby steps and keeps me going.
Posted by Haley (Member # 22008) on :
Peimomma. I will try to journal specifically about the oxygen. I do keep a calendar and log what I've done and how I am feeling etc.
To tell you the truth I get very confused, in fact it's one of my worst symptoms, almost like an alzheimer patient. So, I start to do something and then I forget. I have notes all over the place, but not sure what they mean hahahaha
That is a good suggestion. I will start a journal only on the oxygen I'll keep it in my chamber, so I won't forget. Do you write something everyday or weekly or ?
Kaibyrd - I did feel claustrophobic when I first tried the chamber, but it went away quickly. I now see the chamber as a haven, a place that I can go away from the world. I am in a complete state of gratitude when I am in my chamber. Worst case scenario... if you felt that you needed to get out, you could unzip the chamber.
Posted by Kaibyrd (Member # 45606) on :
Thanks Peimomma and Haley!
Oh so if I have a real freak out, I can just get out, calm down and try again? I thought once you're in, you gotta stay there.
Posted by Peimomma (Member # 45177) on :
Haley I journal every day only pertaining to Lyme therapy, exercise, and symptoms. My memory/mind has been one of the symptoms that has improved the most....my poor brain is locked in a sick body still😉. Hahahaha
Yes Kaibyrd, as long as you don't inflate you can unzip. Once you are in it takes 10 min or so to decompress. The problem for me comes when the chamber has just been zipped and the top is hanging low before it puffs up. That's when I need the person in the window talking to me. Once it's inflated I just have to stay occupied.
Haley I agree that it is a place of refuge and peace from the world. I've been able to nap a few times but usually surf the net or watch Netflix. We have a remote in our chamber so I can shut it off at anytime if something is bothering me and need to decompress and get out.
Posted by Kaibyrd (Member # 45606) on :
Thanks Pie Mamma. I really want to do this if I can afford it but just watching videos makes me panic. I'll have to work on that and maybe I could start slow with just 10 minutes and add a few each day. The benefits just seem to be so great that I'm willing to do whatever it takes. I've found a therapy that's helped me with other anxieties called Tapping so I'll start watching more videos of people in the chambers while doing that. Maybe that will help get me to a better place with this.
Posted by Kaibyrd (Member # 45606) on :
Sorry Peimomma, spell check changed your name for me. Posted by Peimomma (Member # 45177) on :
No worries Kaibyrd😊 I think we all have a love hate relationship with spell check...lol
I want to share about the last few days and my treatments. Due to pollen from cottonwood trees my allergies and sinuses were acting up and I wasn't able to clear my ears the last two days. So no dives but I did sit breathing the O2 for 2 reasons, first to keep my routine of treating and second the O2 is still beneficial 😊. I'm back in the tube today, YAY!!!
Posted by Monti (Member # 45718) on :
Peimomma,
Were you able to dive while on vacation in Alaska? I know some people take their chambers with them.
Posted by Peimomma (Member # 45177) on :
Monti,
I didn't take my chamber and it was a nice break from therapy. I had 5 days of no chamber and felt very good the entire trip keeping the crazy pace I did with a bunch of healthy people.
Posted by soccermama (Member # 35101) on :
I want to encourage everyone to keep posting their progress. I am trying to work up the courage to invest in a chamber.
I have tried so many things since my crash in 2011 and while I have improved, I am still not 100%
Very frustrated but learning to live with my current limitations.
A chamber is so expensive and I have already spent thousands upon thousands of dollars. I just don't want my family to suffer financial loss anymore.
Sigh!
Posted by Phoiph (Member # 41238) on :
Soccermama...
Do you know anyone in your area that you could cooperatively share a chamber/expenses with?
There are ways to rent a chamber and divide expenses. For example, if you had 3 other people involved, your cost could be $125./month each (about $4.00/session).
That is only one way...another would be to rent-to-own a used chamber, for example.
One thing to keep in mind also, is that a quality chamber is an investment that can be resold, so you can recoup much of your investment if you decide to sell.
Feel free to PM me if you'd like help or information...
Posted by Peimomma (Member # 45177) on :
Soccermama I hear you.....it was the most difficult decision for me as well because we had spent 10's of thousands of dollars on therapies, a clinic in Reno, Rife machine, sauna, massage chair, herbal protocol and numerous vitamins and medications. Not to mention a new bed, car, vacuum and many other things to help control my pain...ugh
Phoiph was instrumental in providing us with sound information that helped us turn the corner and take the leap of faith. I'm so happy I bought and am looking forward to having my life back in the near future. It does take persistence and consistency to do daily treatments even when we start to feel better.
We bought not only for my health but for my husband to treat as well. He turned 50 this year but was told the other day he looks 39😊. We absolutely look at our chamber as an investment and a medical expense tax write off at the end of the year. I hope to see you posting your progress soon enough too👍
Posted by CD57 (Member # 11749) on :
Peimomma, did you go to the Sierra Integrative Medical Center?
Posted by Peimomma (Member # 45177) on :
CD57 it was called Reno Integrative Medical Center when I went in Jan 2010, not sure if they changed the name??? It was a few months before my positive Lyme test.
Posted by Peimomma (Member # 45177) on :
Dive 157 happening now😊
I finished my 5k run/walk this morning in 43:55 minutes and recorded my video shortly after with others still finishing in the distance.
Feeling good and energized to keep treating. It is so overwhelming to think just 4 months ago I was pretty much housebound with pain, fatigue and all the other horrible symptoms that go with this illness.
I still have a lot of healing to do so I can get back to a job and do all these activities I've been doing lately. Pacing myself and conditioning my body to go just a little more each time.
For the month of June I have decided to do the 10,000 steps M-F, and do yoga or light weight training M-F rotating. This was my first week and actually had some muscle soreness, not Lyme pain....lol. A few headaches but nothing the lasted after getting out of bed and moving/stretching.
Posted by Phoiph (Member # 41238) on :
Congratulations!!!
Posted by Kaibyrd (Member # 45606) on :
That's awesome Peimomma!!!
Posted by Peimomma (Member # 45177) on :
Thanks Phoiph and Kaibyrd,
Yesterday we rode 180 miles on the motorcycle to meet some family for lunch and I did great in the heat.
I felt so good this morning during my walk I started to run and soon I felt like Forrest Gump....I just kept running and running until I hit 3.1 miles. This afternoon I did my light weights, drive to a meeting and helped hubby hang window film.
Not sure when my next herd will hit but I'm taking advantage of this good streak while it lasts. I've cut back the coffee enemas again to 3-4 a week. Still taking greens, vitamins and homeopathic remedy once a month.
Posted by Peimomma (Member # 45177) on :
Not sure when my next herx will hit, not herd. Although it does feel like a herd has run over me when they come😳
Posted by CD57 (Member # 11749) on :
Phoiph, hoping you can talk more about the diet aspect of your recovery, or anyone else?
Someone turned me on to this blog of a young man with an unoperable brain tumor who was eating lots of plant fats and getting worse....then he went on a ketogenic diet and has gotten a lot better. Ketogenic diets are known to improve seizures.
Interesting read CD57. Has anyone tried this diet?
Posted by A.G. (Member # 44713) on :
I couldn't get past 5 minutes in my Drs office. It made me flare so bad I was bedbound for 2 weeks.
I don't know if it's because I cannot genetically detox, or what.
I had such high hopes because it took away my neuralgia and myalgia immediately while I was in there.
Anyone have this problem and still keep going and make progress?
Posted by Phoiph (Member # 41238) on :
A.G...
Most people with Lyme and chronic illnesses need to work up very slowly with mHBOT...but with the proper starting protocol, they are able to continue and work up.
Unfortunately, most clinicians don't fully understand the sensitivity of people with Lyme, and will start them too quickly or with too much pressure.
Also, many people underestimate the power of mHBOT, and will initially try to do many other protocols along with it. Often times this is more than the body can handle, and can be counterproductive.
You can PM me to discuss an initial protocol if you like...
Posted by S13 (Member # 42830) on :
quote:Originally posted by Peimomma: Interesting read CD57. Has anyone tried this diet?
I am now actually following the GAPS introduction diet (stage 2), without vegetables except for sauerkraut juice. Thats basically a ketogenic diet, no carbs at all.
And it is helping me tremendously, and allowing me to rebuild my gut and gut flora! Also it strengthens my immune system. That does imply some healing reactions, but those are expected.
I think Phoiph actually followed a similar diet when she started her path to wellness?
Posted by Phoiph (Member # 41238) on :
CD-57 & S13...
I was only able to eat 6 of the same foods for a number of years after stopping drug therapy and prior to starting mHBOT.
I was force feeding 3x/day, and wasn't digesting much at all, but the foods that kept me alive were: bone/meat broth, avocados, sardines, soaked and baked nuts, eggs, and peeled green apples.
As you can see, it was a diet high in good fats, and I continue to eat these good-fat foods...but of course, have a much more expansive and rounded diet now that I am well.
I still don't eat gluten (and likely never will), and rarely any gluten-free grains; but do include sheep and goat dairy, grass fed beef, salmon, fruits, vegetables, quinoa/seeds, and dark chocolate.
I buy organic as much as possible.
Even though I didn't follow the GAPS diet exactly (I was too dysfunctional to follow anything and the outline wasn't as clear back then!), I do highly recommend the introductory GAPS diet...and then moving on to the GAPS to help heal the gut...even if you don't believe your gut is a problem...
Posted by A.G. (Member # 44713) on :
Phoiph: your mailbox is full. Posted by Phoiph (Member # 41238) on :
Sorry...I just deleted a few...
Posted by S13 (Member # 42830) on :
Phoiph, would you say the diet with probiotics was responsible for fixing your gut? Or did you feel mhbot also had a role in this?
Posted by Monti (Member # 45718) on :
quote:Originally posted by A.G.: I couldn't get past 5 minutes in my Drs office. It made me flare so bad I was bedbound for 2 weeks.
I don't know if it's because I cannot genetically detox, or what.
I had such high hopes because it took away my neuralgia and myalgia immediately while I was in there.
Anyone have this problem and still keep going and make progress?
Hi A.G.
I've been doing Mhbot for about 3 months now. I started at the full hour treatment and quickly discovered that it was much to much for me. After talking with Phoiph I reduced my treatment time down to 20 minutes.
I know 20 minutes is still much more then your 5 minutes that you couldn't tolerate well. But the point the point I wanted to make was after 5 weeks I am now finally able to do a full hour treatment without negative results.
I know your PMing Phoiph which is great. She helped me and I am sure she can help you too.
Now to begin making gains Posted by Peimomma (Member # 45177) on :
Yay Monti!!!!!😁
So happy you stuck with mHBOT and are now up to full speed. I look forward to seeing you post your gains.
I'm in a cycle of herxing with joint pain and fatigue but still far better then my days in January and before.
Posted by Monti (Member # 45718) on :
I look forward to posting gains as well
I have noticed this...Up until a few days ago each time I finished my dive I would feel extremely tired for a few hours. About 3 days ago that tiredness after the dive wasn't their. I figured it was a one time thing but so far it hasn't come back.
Posted by Phoiph (Member # 41238) on :
S13...
The diet kept me alive, but wasn't healing my gut alone, by any means.
It wasn't until I did mHBOT for several months in conjunction with the diet that the gut (and ultimately my entire condition) started to improve.
mHBOT is very healing to the digestive mucosal tissues (e.g., see use with ulcerative colitis and Crohn's), but works synergistically with a gut healing diet. In my opinion. Both are crucial!
I actually remember the day my digestive system started kicking in again. I began to feel the first "hunger pangs" I had in years while in the chamber (I had severe Lyme-induced gastroparesis). Around this time I also felt the stomach acids starting to be produced again, at which time I was in a much better position to gradually add foods to my diet.
Monti... Sometimes people do have fatigue when they first start mHBOT. It increases cellular metabolism, so it can be like exercise to your body, and may requires rest. Usually this phase passes as your body adjusts as it gets stronger...
A.G. and I are currently discussing why the difficult time after 5 minutes of mHBOT. I have shared that I strongly suspect it is not the mHBOT per se, but the addition of mHBOT to an already taxing protocol that may have been the tipping point...
Posted by Peimomma (Member # 45177) on :
Great observation Monti, it's the little gains that have helped me keep the strict schedule of diving every day even when I want to be doing something else.
I have noticed that my dips come near a 60 dive interval, 60, 120, 180. My first big wall was near dive 60, the April herx was right near dive 120 and this one is at dive 172.
For those that may not have read in my past postings that when I started mHBOT my gut issues had been resolved along with most of my migraines which is one of the reasons I believe I am doing so well in 4.5 months treating. It took two months on Chinese liquid herbs before I was able to tolerate most all food again. I also was diagnosed with gastroparesis in 1996.
Thanks Phoiph for keeping us all encouraged as we go through these changes with our bodies during this healing process.
Posted by Phoiph (Member # 41238) on :
Thanks to you, too, Peimomma, and to everyone here for having patience, commitment, and resolve!
Posted by Monti (Member # 45718) on :
It really is a wonderful thing to have this support and shared experience from everyone.
Group hug Posted by Peimomma (Member # 45177) on :
Lab tests are back, and after 3.5 months of treating with mHBOT.
CD57 is 23, was 19 in 2014
C4a is 64,000 and was 68,000 in 2014.
First time my numbers have moved in a positive direction. I will retest in January.
Posted by Peimomma (Member # 45177) on :
LOL Monti
Group hug
Posted by SacredHeart (Member # 44733) on :
Speaking of the gaps diet, I tried the first hardcore part that is expected before I knew I had lyme. It was a disaster. By week two it felt like I had knives going through my legs at intersecting points.
I think it is a great idea, but I'm an ectomorph, and I need tons of carbs. I wasn't getting enough carbs from the veggies in the home made bone,meat,and fat broth soups.
I'm considering just going with some kefir grains and making my own at home that contains no sugar. It has way more good strains than any probiotic out there.
Posted by S13 (Member # 42830) on :
I also thought that i needed carbs. I was always a carb person. Rice, potatoes, pasta, bread etc. Somehow i felt my body just needed carbs in order to survive, like a basic instinct. So i just figured i was a carb person. How else was i supposed to get my daily energy and not loose weight?
Well i was wrong. Im now on zero carbs (that means no veggies either) for more than a month and it just feels better! It helps to follow a diet that specifies meals with healthy fat content, like gaps. I believe anyone should be able to do a zero carb diet without feeling like crap. Your body has evolved to do so! So if you are not able to, then something is wrong.
The craving of carbs is psychological, and driven by bad gut flora. They want you to eat all those carbs, otherwise they are going to make you feel crummy!
Kefir is a good starting point, yes! Very cheap and loads of good strains of bacteria and yeasts. But if you keep eating loads of carbs, the pathogenic flora will just regrow over and over again each time you eat.
Remember, gaps also boosts your immune system, so some healing reactions are expected! Maybe for the first time in a long time you were actually feeding and nourishing yourself instead of the bad bugs!? And then your immune system kicked in and started attacking borrelia?
Posted by spinning122 (Member # 42223) on :
Right on, S13. Thanks for sharing your experience with the zero carb diet. A couple of months ago I started getting pretty strict with my diet because I was frustrated that I wasn't making much discernible progress.
It essentially turned into a plant-heavy ketogenic diet (lots of avocados, leafy greens, olive oil, coconut oil, etc) but with sardines, grassfed meat, eggs, and bone broth, too. I kept getting sicker and sicker. I emailed Phoiph in a panic because I got horrible sinus inflammation so bad I couldn't dive, and cystic acne started popping up everywhere, but I didn't put two and two together that this increase in plant foods could possibly be the cause. I thought it was "toxins" or that I was just peeling off the layers of the onion..
Now that I think about it, I've always felt sicker when increasing any plant foods (you know how green smoothies became the "thing" a while ago?) yea not good for me. Herbal protocols always make me feel worse (and not in a herxing, it's doing something good kind of way). I understand that this can also be related to leaky gut but I have been working on that for so long and things are fine until I increase plant foods?..
It wasn't until I came upon Andrew Scarborough's personal blog (http://mybraincancerstory.blogspot.com) about fighting brain cancer on a "zero carb" ketogenic diet (CD57 has also linked to his story above) that it dawned on me that the salicylates could possibly be messing with me (Andrew started feeling much better after he removed plant foods).
And haha, smart me, I was applying topical salicylic acid on my acne and it was just getting worse and worse. I stopped that right and switched to a salicylate-free toothpaste and mouthwash (I've been dealing with painful gum/tongue/mouth inflammation) and cut out the avocados, most vegetables, coconut oil, etc. that pretty much took care of a lot of inflammation.
I know this can be kind of a touchy subject because we've been taught "plant good, animal bad" for so many years... But I'm going to try out the animal-based (grassfed/free-range/wild, of course with lots of bone broth and organ meat to supplement...can't seem to find brain in the U.S. though...) ketogenic diet for a while and report back.
I assume that my lack of tolerance for the salicylates in plants is related to mitochondrial dysfunction from Lyme so hopefully with time (and mhbot of course ;-) ) things will heal on their own.
By the way, I am 477 dives in (still 1 hr each day) and it keeps my pain at bay and I feel like my brainfog is getting a little bit better. I plan to increase exercise soon as I don't feel like I am moving enough on a daily basis. It doesn't help that I am on the computer a lot for homework (I am back in school whoo-hoo).
I also want to add that low thyroid was a big piece in my Lyme puzzle. I knew that there was something wrong with my thyroid for years but my then-doctor never tested the right numbers and everything came back "normal" and I assumed that as I healed, the thyroid problem would go away on its own, much like in Phoiph's case. Well it was just getting worse!
A little over a month ago I started getting horrible thyroid pain. It was choking me, making me cough and gag and I felt so flu-ish. I was scared it was hashimotos so I started doing a lot of research (which was when I realized my previous doc had been testing all the wrong things). My doctor now is helping me treat my thyroid and with t3 added, it is like night and day. (Hopefully this is just temporary support while I heal with mhbot?)
I want to thank Phoiph for your continued support And welcome to all the new mHbot-ers. It is incredible to see some of you making such rapid progress.
Sorry this was such a long read, my update was long overdue! Carry on mHBOT-ers!
Posted by Monti (Member # 45718) on :
Spinning122... That a lot of dives. How would you rate how you feel now compared to before you started? You mentioned you are back to school. Is that due to mhbot?
Thanks
Posted by Haley (Member # 22008) on :
Yeah spinning I appreciate the long timers coming back and reporting. My progress is slow, but I do believe it is helping, I have days I'm not so sure. This September 3rd will be one year for me - one hour mostly every day.
Posted by soccermama (Member # 35101) on :
Here is another testimonial. I know that can't compare to actual research but there is no existing treatment that has been proven by research.
The only evidence of any treatment modality for lyme has been the people who have been cured by it.
I wonder if pain is the symptom that is usually helped first. I don't have too much pain (thank God). I have mostly fatigue, weakness and cognitive problems.
Posted by Monti (Member # 45718) on :
Haley,
How are you now compared to when you began? One year at 1hour dives is significant.
Thanks, Monti
Posted by Monti (Member # 45718) on :
Thanks for the link soccermoma
Posted by Peimomma (Member # 45177) on :
Wow!!! The guy in the article only did 2 weeks of treatment and his symptoms subsided? Is that possible? Now I wonder if this is where people are getting the idea 20 treatments and all will be well.
After 24 years of deterioration in my body it's going to take more than 2 weeks to fix. That's ok cause I'm a patient lady and as long as I see progress I'm staying the course. I certainly didn't get sick overnight so to believe you will heal in a short period of time is not realistic.
The difficult part I'm finding now is I'm in this weird place of not sick as most Lyme people anymore but not a healthy person. Phoiph any suggestions on how to cope in the in between stages of healing? it's not even easy to describe to people where I feel like I am.
I went to lunch with a friend yesterday and tried to explain but she's a healthy person, hiking, diving literally, going to school full time for a Masters. On the other end I don't have all the symptoms like I did in January and before so I don't fit the group of those searching for answers. I have my ups and downs with this therapy but I know what's causing the issues.
And because the healthy people see me more active they think that I'm all better.
Posted by Phoiph (Member # 41238) on :
Peimomma...
You are right on about people getting an erroneous impression that mHBOT is a "short term" treatment. It can be short term, and is for many conditions, but not chronic Lyme/illnesses. This was the reason I almost sent my chamber back after 40 dives without overt progress, as there was no other information out there about long term treatment...
Sometimes people have an initial "honeymoon period" where they feel energized by the 02, but that is usually followed by some rocky times as the real "healing and dealing" begins.
I can relate to what you're saying about being in limbo (i.e., not 100% ill, yet not well either).
When I started mHBOT, I had no idea if I was ever even going to improve, much less make it to the finish line. Once I started making gains, I wondered if my progress would plateau somewhere in the middle, and that thought was unacceptable to me. So, I tried not to over-think it (thinking wasn't exactly my strong suit at the time anyway), and doggedly kept getting in the chamber every day...
It was very surreal for me when I started to enter the world again after being homebound and in a "walking coma" for 8 years. I would think I was doing quite well, until I was around non-ill people who's energy seemed so "large".
So many things had changed, (e.g., "smart phones", new bills/coins, construction/urban sprawl, etc.) that I felt like an old person who needed a teenager around to decipher the world for me...lol...
To add to the strangeness, I started to see nieces and nephews who were born when I became homebound (and couldn't tolerate visitors), and were now 5-6 years old...
Making ordinary conversation with strangers seemed inane...I kept thinking, if they only knew how psycho I was just a few short months before, they would begin to back away slowly...lol
Miraculously, at some point, everything starts to mesh seamlessly, and you step back into your life...with many new insights, gifts and rewards that you had no idea were coming your way...
Posted by Monti (Member # 45718) on :
Good posts!
Posted by spinning122 (Member # 42223) on :
Hi Monti,
It's a funny thing, trying to rate how I feel now compared to where I started. I guess if I had to rate it, I think I started out around 40% and now I'm at 70%, but it's definitely hard to put a number on this!
The changes and improvements are so gradual, almost imperceptible on a day-to-day basis that I often don't realize how far I've come, and I get frustrated that I'm not making quick enough progress, especially as new and different issues pop up constantly (peeling those onion layers!)bMy general trajectory is up, though.
When I started with mHBOT I had already been down the road of antibiotics for 2.5yrs, and had just finished 80+dives regular HBOT (which gave me the most rapid improvements in pain!) so mHBOT has been an extension/continuation of my treatment path. It is the only thing I do now (no more killing drugs anymore, I honestly don't feel like I need them).
I have been infected for 24 years (I'm 28 now) so I don't expect to heal overnight. And this is actually where it becomes hard to rate my % of health because honestly I don't know what it feels to be functioning at 100%.
Peimomma I actually have the same feelings as you do about being in limbo, getting better but not exactly healthy like a normal person. Strange place to be..
Jumping into my chamber daily is as automatic as brushing my teeth to me now. I am 100% dedicated to continuing with this all my life.
Monti you asked about me being back to school. Yes, mHBOT made and continues to make that possible. I had horrible brain fog and inability to concentrate on anything. I could not make sense of or retain any information. Honestly putting together my mHBOT chamber was so complicated to me that I almost cried while setting it up! The instructions made zero sense to my scrambled brain.
Two years ago I couldn't fathom returning to school, but here I am, learning new things again (haha!) and I just turned in my final project a couple hours ago
As you can see by my elegant and coherent writing style (*SARCASM HERE!!) I have a long way to go before I consider my brain healed.
Phoiph, how do you feel about this venture into a salicylate-free lifestyle I am about to try out? I know that conventional wisdom warns against animal-only diets, but then again Lyme isn't a particularly conventional illness. Something is just not right with my diet at the moment and I feel like I need to get to the bottom of it.
Posted by Monti (Member # 45718) on :
Spinning122
Thank you for your reply. 40% to 70% makes a lot of sense to me. I like using percentages when describing how I feel.
Wow I can't imagine not knowing how it feels to be Lyme free. To be sick since 4 years of age is crazy.
I know exactly what you mean about feeling like you wanted to cry when trying to set up the mhbot. Many times I can't formulate a thought. I am looking forward to that getting better.
The fact that you now can go to school is a big indicator of improvement! Glad this is working for you and that you no longer take bad meds. Sorry for all your years of illness.
Posted by Haley (Member # 22008) on :
Monti- i've been using the chamber for about 10 months now; at times I feel that I have improved , other times I feel I should be much further along. I am still taking some Cowden products, which may be contributing to my fatigue and weakness. I plan to stop those soon and then I can better assess my level of improvement. I do notice some cognitive improvements which for me is the most important. God take my body just don't take my mind.
I can relate to the conversation about not feeling normal when I'm with healthy people. Sometimes I think I'm getting better , then I sit in a meeting and I realize how much slower I am than everyone else I try not to get down about it .
Phoiph - I bought the GAPS diet, I hope to try this out. I really don't have the energy to cook , but will try to make a big batch at a time. I am even going to eat liver, which in the past has made me hurl. I'm committed to getting well, so I will even eat liver 💪
Posted by Monti (Member # 45718) on :
Hi Haley,
I am currently doing Zhang protocol as I begin the mhbot process. I did cowden for a solid year but all it did for me is hold my health in place. I think Zhang is doing about the same. Hoping mhbot is the ticket.
So you have improved some but it's minor?
Posted by Monti (Member # 45718) on :
Haley,
10 months at full 1 hour dives?
Posted by Haley (Member # 22008) on :
Yes Monti - 1 hour a day (the Phoiph protocol ). Yes I would say minor results, but there are days that I feel the results are more significant than I realize... For example - I had live blood analysis on Friday. I decided to tape the conversation with the practitioner because he talked a lot. I listened to the 45 minute recording and realized that I AM better. I usually would have a very difficult time conversing, comprehending, but the conversation flowed and I did not feel completely drugged or floating as I usually did in the past. Also, I'm reading some difficult books which I seem to take in, I may not remember everything, but it seems the synapses are firing to some degree!
Do you have a good concentrator for supplemental oxygen? It may be my imagination, but I feel that I get more results when I take in lots of supplemental oxygen. I close up all the holes in my mask and I breathe in deeply for one hour while I'm in the chamber . I believe this gets the the oxygen deep into my brain.
[ 06-20-2015, 11:44 PM: Message edited by: Haley ]
Posted by Phoiph (Member # 41238) on :
Haley...
Please don't close the holes in your mask...they allow the C02 you're exhaling to get out so you don't rebreathe it!
Posted by Monti (Member # 45718) on :
Haley,
Ok well it sounds like slow but steady improvements so that really is a good thing. It would be nice if your gains were more noticeable being a year into this but it is working so keep it up
Thanks
Posted by mbdq (Member # 26277) on :
Hi guys! Some great updates. Congrats to users that are making great strides quickly and for those of you on the long and slow journey like me, keep going and dont give up!
I am up to about 450 hrs of hbot. I am definitely improving via a very long, slow, up/down process up the trajectory is up! In Sept it will be 2 years for me.
I have had improvements in migraines, head burning, joint and muscle pain, tremors, fatigue and more. I can still experience my major symptoms although they are less painful and dont last as long.
When I started HBOT I said I wanted to improve to the point where I could "live a little old lady life." I wanted to be able to work a little, be able to run one errand a day, see some friends fora quiet get together, etc. I am happy to say I have surpassed that goal! I am working full-time (probably shouldn't be but thats my own stuff and I mostly work from home), can run multiple errands on the weekends and I am riding my horse consistently.
I know exactly how you all feel about feeling better but not 100% even though you look normal. Its a strange place to be and one I've been in for 6 years- I have been one of those lyme patients that never looked that bad despite the catastrophe going on inside my body.
I also know how it feels to be scared and doubt this treatment because my improvements have been so slow, but I figure my body has a lot of healing to do and its doing its best. I am sure I have also slowed my progress by continuing to work with some mandatory travel about once per month.
I have a lot to say about the GAPs diet (been very helpful for me and husband who also has lyme) and will post that later. I was on abx for 4 years- my gut was a mess. GAPS and hbot are helping to fix that.
Keep going divers....low and slow....
Posted by Monti (Member # 45718) on :
Mbdq,
Have you been doing any other types of treatments during this 2 year hbot period? And are you doing hbot or mhbot?
As long as this moved me in a forward direction no matter how slow I will do this. 2 years a long time but to be able to work and travel and live better then a little old lady sounds amazing!
Does your husband use it? Any gains for him? Has he achieved "little old man" health level yet? Posted by mbdq (Member # 26277) on :
I was on abx with hbot for the first few months. Also went back on abx for one month last summer. No abx at this time. Some low level supportive herbs via LLMD on and off- garlic, turmeric, artemisia, etc.
I do mHBOT (phoiph method ☺). I used to do 1 hr per day but in the past two months, I have slowly worked up to 80 minutes per day. I did this because of the time I miss in the chamber from work travel. My goal is to get to, but not beyond 30, hours each month.
My husband is markedly better. He was struggling with his Lyme treatment and LLMD said next step was IV. He did mHBOT and GAPS diet with me and he is much better! He doesn't even use the chamber anymore, works out daily, lost 30 lbs, works 70+ hrs/week in his own business and is maintaining with acupressure massage and acupuncture. He flares from the acupuncture and mhbot will still flare him a little too but he doesn't feel that he needs the chamber now.
Posted by Monti (Member # 45718) on :
I like hearing this stuff!! Thank you
Posted by mbdq (Member # 26277) on :
Some more thoughts-
In our household, I have seen mHBOT help very quickly (my husband did about 30 hrs) and then also take much more time (my case).
However, my husband had pretty cut/dry case. Bullseye rash, on doxy and other abx immediately, prolonged therapy for ~4 months and felt better. Then he relapsed a year or so later after very stressful stretch at work. He went back on abx but they were not helping much after a few months- the IV did not feel comfortable for him, so we did the hbot and diet. He is doing very well.
I, on the other hand, was misdiagnosed for at least 11 years. I went to the best LLMDs and took huge amounts of antibiotics including 8 months of IV. After 2.5 years of antibiotics I tested positive via the culture test. As of last summer, I had antibodies to 3 strains of Lyme and was + for anaplasma. So I have been a complicated case, with a lot of drugs along with alternative treatments as well (Cowden, Byron White, sauna, etc) but slowly gaining on this beast via mHBOT and GAPs diet.
So I think the disease load, toxic load, health of gut, length of misdiagnoses, other outside stressors, etc all contribute to how quickly hbot helps. Some of us have a lot more healing to do and it will take longer. This has been our experience.
Posted by Phoiph (Member # 41238) on :
Phoiph, how do you feel about this venture into a salicylate-free lifestyle I am about to try out? I know that conventional wisdom warns against animal-only diets, but then again Lyme isn't a particularly conventional illness. Something is just not right with my diet at the moment and I feel like I need to get to the bottom of it.
Hi Spinning...
My thoughts are that I have confidence that you are a good detective...and you have been doing mHBOT long enough now to carefully and selectively tweak certain things that are still a nuisance (as you did with your thyroid).
I don't have experience with the salicylate-free diet, but I think the most important thing is to do things gradually and methodically (so you can see what's really helping) and not to go to extremes, as to not shock your body in any way.
Keep us posted...we are all learning so much here from each other's experiences...
Posted by spinning122 (Member # 42223) on :
Thanks Phoiph, I appreciate your input, as always I will definitely go about this cautiously and methodically and let you guys know how I am doing in about six weeks.
One more question for you. Do you feel the need to supplement anything (like magnesium, vit d, vit c, probiotics) with your current diet or do you feel like the foods you eat pretty much cover all the bases? I do take the supps mentioned above and I don't know whether or not they are helping/hurting/just plan draining my wallet.
Mbdq, wonderful update about you and your husband. I hope you continue to make steady gains!
Posted by Monti (Member # 45718) on :
Thanks mbdq for your posts. And as always thank me to everyone else too!!
Posted by Pam08 (Member # 19203) on :
I would also like to thank people for their updates. It is so helpful to see how people are doing with this. Some of us are still following along in hopes that we may be able to try it ourselves at some point.
Glad to see people are improving...even if it is very slow progress.
Posted by Phoiph (Member # 41238) on :
Hi Spinning...
In response to your question:
Do you feel the need to supplement anything (like magnesium, vit d, vit c, probiotics) with your current diet or do you feel like the foods you eat pretty much cover all the bases? I do take the supps mentioned above and I don't know whether or not they are helping/hurting/just plan draining my wallet.
I am selective when it comes to most supplements, since nutrients work synergistically and are best balanced, absorbed, and utilized when they come from food. Studies are showing now that taking certain supplements in isolation can actually be harmful.
It is also concerning that some people think that they can forgo a good diet because they can make up for it in supplements...unfortunately, it doesn't work that way.
In my opinion, probiotics are crucial. They are best from fermented foods, but we rarely get enough of those, so I believe in supplementing. I also include Saccharomyces boulardii.
Select other supplements are OK for a time if you're low (e.g., if your red blood cell magnesium or vitamin D levels are test low), although I would still try to bring those up via food sources simultaneously.
Some supportive herbs & spices are good, like Turmeric, for example, but I'm not a big fan of detoxing supplements and antioxidants. I also filter and add minerals to my water, and use plenty of Himalayan sea salt.
Here is a good article about what happens when certain supplements, like antioxidants, are taken in isolation:
Congratulations on going back to school...you've come a long way since we first connected! You have been an absolute trooper...
Posted by spinning122 (Member # 42223) on :
Thank you Phoiph! It is still daunting to me to take on this whole school thing since I'm still trying to fix nagging health issues and I have to be very careful not to overdo it, but mHBOT definitely helps keep me going.
Wonderfully thorough answer about the supplements. As always, thank you for your valuable input Posted by Haley (Member # 22008) on :
Sorry if this is off topic... I am trying the GAPS diet... It's really difficult... mainly because there is a lot of cooking... what are the easiest things to start with... do you have links to easy recipes? Raw sauerkraut is easy, I've been eating a lot of that
Posted by S13 (Member # 42830) on :
Bone broth shouldnt be too difficult. If you can make a large batch, you only need to reheat it later. I usually make a batch that lasts me the entire week.
Sauerkraut is easy yes, though making the batch can be a bit of a struggle.
Fermenting fish is not that hard, and i personally like the taste. I use mackerel or herring, cut it in pieces, add some whey from my kefir batch, and add some herbs (like black peppers, dill and cilantro). Let it sit for 4 days on room temperature and its done. You can make a batch that lasts for about a week in the fridge. You can find the recipe in the book btw.
I think its good to focus on the fermenting foods of the gaps diet. The introduction diet also guides you through this process.
Posted by Haley (Member # 22008) on :
Thanks S13, I'm going to try to ferment some things. I buy the sauerkraut , but it's top of the line stuff. I've never heard of fermenting fish. I must have skipped over that part. I mostly read the theory behind it. Ive always known casein was a problem for me, but very interesting to read about her research.
Posted by Phoiph (Member # 41238) on :
Also, you can freeze the bone broths/soups in sized containers, which when thawed will last a few days at a time...
Posted by S13 (Member # 42830) on :
I just wanted to add an observation of myself concerning the GAPS diet and mhbot:
Once you stop feeding the bad bugs in your gut with carbs, and toxins no longer continue to poor into your system, then and only then(!) your body will finally start to detox!
Mhbot can aid in boosting this process, but stopping the inflow of bad toxins is the first step everyone should do!
Once the detox really kicks in when on GAPS and mhbot, you will probably notice detox reactions. The mobilisation can be horrendous, and you have to be carefull all those toxins dont cause additional bad growth in the gut. Maybe use binders, or gentle herbs like ginger, olive leaf, nigella, to keep bad flora from exploding during the detox phase. Ginger can be of particular help if you have nausea (like me).
I also find that magnesium is my rate limiting factor for the detoxification process now. So if i want to feel like crap i just use more magnesium. And remember, its not a fast process!
Ive been in this detox phase for 6 weeks now, and have made considerable progress. I look healthier (less yellow/brownish skin), have more energy, better cognitive functions and way more stable psychological symptoms like depression and panic attacks. But all in all i think ive made an overall 30% recovery in that time. So it takes time! Keep that in mind.
I hope this helps other people as well.
Posted by Haley (Member # 22008) on :
Thanks Phoiph and S13.
S13 - what do you mean that magnesium is your limiting factor? Does that mean that you don't think you should take it?
Also - do you get constipated on GAPS? had to ask
Posted by S13 (Member # 42830) on :
Magnesium is not very well represented on the first stages of the GAPS introduction diet if you also skip out on most veggies. Only the fermented fish i make has some magnesium in it. And my magnesium stores were low to begin with, given that i also did intermittent water fasting.
Later on when adding more veggies and nuts like almonds, you get more magnesium from the diet. So now i supplement. But it doesnt take a lot to start noticing the detoxification reactions. I can tell a difference when i take just one Mag Tab SR (thats only 84mg of elemental magnesium). When i up it to 4 tabs (336mg) i get serious reactions, including heart palps, breathing difficulties, more nausea, feeling cold, anxiety attacks. So its slow and steady for me.
There is a bit of constipation, yes. But tbh i dont think it has a lot to do with the diet itself. The oils and sauerkraut should be enough to get normal transition time. Its probably due to the detox reaction (the constant dumping of toxins in to the small intestine). And its just a longer than normal transition time. I do have movements about once a day. But usually after a meal, so the new food pushes the old food out. So on occasion i do an enema to speed up the process and get rid of the toxins faster.
Posted by Haley (Member # 22008) on :
Has anyone had viruses come out after using oxygen? I remember one person had shingles.
I'm not saying the oxygen feeds them, but maybe it kills off bigger bugs which release viruses.
Just wondering if other people see this. I have some scary symptoms, I believe it may be a virus but there is no rash yet. I'm hoping it's not shingles.
Posted by Phoiph (Member # 41238) on :
Haley...
What are your "scary" symptoms?
Posted by Peimomma (Member # 45177) on :
200 dives in the books!!!
Wow, what a busy month I've had since completing my 5k. We had family visit from out of state during three different weeks, attended BBQ's, shopping at malls, motorcycling, lunch with friends and touring local areas.
I've been running 1.5 miles 6 days a week, and increasing my weight training. Two weeks ago I started training with my husband and I have to say it's good to see my muscles coming back to life. I really enjoy the sweat I get from the run and feel refreshed and flushed to start the day.
I sleep at least 8 hours a night and I'm taking a protein shake once a day for my muscle recovery.
It has been so nice this last month catching up with friends and actually laughing again. I can hardly wait to read these comments next summer after I have had another 500 or so dives in the books.
If I knew I was going to feel this good and have this kind of quality of life 6 months ago, I would have paid 50k for a chamber. I would guess I'm running at about 70% and still building the endurance and strength back in my body. Retraining my body to function at a normal level is the part that takes patience.
Posted by Peimomma (Member # 45177) on :
I think I saw a comment wondering what my 100% will look like...lol
A day in the life of Peimomma at 100% 0500 wake up 0530 run/weights 0800 start work....YAY a job!!! 1730 arrive home from work 1800 cook/eat dinner 1900 project around the house, shopping, walk 2000 read a book, watch TV, internet surfing 2100 prepare for bed 2200 sleeping
It will be at least 9-12 months until I will feel confident in doing the above without being worn down and possible relapse. I do take days off of everything except diving so I don't burn out. after a day or two off I'm excited to get started again with my workout, seeing people, appointments and more.
My schedule these days looks like this 0600-0700 wake 0730- mHBOT 0930- coffee detox or not 1000- morning errands outside the house 1200- lunch 1230- rest for an hour outside or just light reading 1330-1400 house work, laundry, meet friend 1600- run/weight workout with husband 1730- cook/eat dinner 1830- rest, hangout, read, phone calls 2030- prepare for bed 2130- sleeping
I no longer nap during the day but still need rest time for my body.
Posted by Monti (Member # 45718) on :
And what was your schedule prior to mhbot? Posted by Peimomma (Member # 45177) on :
good question Monti....
0600-0630 wake to see hubby out the door 0700- back to bed 0900- coffee detox, massage 1000- out of bed to do a chore like one load of laundry or vacuum downstairs 1100-1200 lunch 1200- clean up kitchen from the morning 1300- lay down for a nap 1500- greet husband 1630- watch TV with no particular interest, just wasting time 1730- eat dinner, I rarely prepared meals because of fatigue and or pain 1800- back to couch usually wrapped in a blanket to keep warm 1900- prepare for bed 2000- sleeping for maybe 5 hours before waking for 2-3 hours.
Rarely spent time out of the house unless husband drove because it caused to much confusion and fatigue for days. I met with a friend a few times a month to sit and talk or some walking but usually ended up with sore hips and back for the next three days....ugh, I don't miss those days. Most of my time was spent putting around the house or resting. To even lift a light 2 pound weight would give me a 3 day migraine.
Today I was doing shoulder press with 30 pounds, rows with 55 pounds, 100 kettlebell swings, 30 second plank twice and 45 pound goblet squat and this was after my 1.5 mile run. No headaches or body pain. I usually get my 10k steps not trying now along with the weight workout.
This week has been slow because I've been without a car but I've made good use cleaning walls, and other chores that never get noticed.
I think the thing I've noticed with the working out is that my body was very very out of shape. It has taken 3 months to build to my current state of function. I started in May walking the 10k steps M-F and then added beginners yoga halfway through the month to start building strength. Every two weeks I upped my schedule and added in something to challenge my body.
I have a long way to go to get to where I was functioning before illness, I was a very active person outdoors in addition to working out. I've made great progress and am so grateful for the gains I have seen. I have been strutting around in shorts this summer, first time in 5 years...lol
How are you progressing Monti? Are you journaling your days? I can not stress this enough so you know where you have come from. It's a pain in the butt I know because I do it every day, but I can hardly look back at the first days in my journal without an ache in my heart for all I was going through.
Posted by abp (Member # 37656) on :
Wow, this entire thread is so fascinating. I did 3 weeks of regular HBOT last year at 2.4 ATA and cleared mold out of my body, but felt no great changes otherwise. I have Lyme and am at the point where Peimomma was before mHBOT, in needing a nap in the afternoon or if I don't, being wiped out the next day. Can anyone suggest a source or listing of used mHBOT machines? Thanks!
Posted by Phoiph (Member # 41238) on :
abp...
I know we haven't had time to connect yet outside of an initial PM, but I have good resources for used chambers, both with private buyers, and through the manufacturer (plus, I pass on discounts...and FYI, I don't take compensation for these referrals, or anything to do with mHBOT).
There are caveats when buying used chambers that I want to discuss with you before you purchase something...just for your protection...
Posted by Monti (Member # 45718) on :
peimomma...
On May 13 I began full 1 hour dives. So about 2 months worth at this point. It took about a month to build up to that level.
Last week we went away on a 1 week vacation so I wasn't able to do any dives. Other then that I have been very faithful.
So far I don't really see any noticeable changes. I do suspect some mild improvements in different areas. For example I do seem to sleep better more often. Beyond that I don't dare to report anything since every time I have in the past it turned out to not last.
I was journaling daily but with such a lack of change I stopped. However I do not plan to stop mhbot even with zero improvements for at a least a year. I have a very strong feeling that won't happen though. I am confident I will receive some level of benefit.
Posted by Phoiph (Member # 41238) on :
Hi Monti...
It is still very early in the game...don't be concerned about not noticing overt changes yet. Remember that I almost sent my chamber back at that point...what a mistake that would have been!
Sleeping better is a positive sign.
I admire your commitment of consistent treatments...and please do keep up your journal...you'll be glad you did (and so will we...:)
Posted by sheminesque (Member # 45770) on :
Phoiph, is your mailbox full?
Posted by Phoiph (Member # 41238) on :
Yes, sorry...I just deleted some...
Posted by Monti (Member # 45718) on :
Hi Phoiph,
I appreciate your thoughts. I will start journaling my progress but I don't see the point in a daily journal. Maybe once a week type of thing would make more sense.
And I'm not discouraged. I know this is a process and not everyone makes gains quickly. You helped me to appreciate that . That's really the key to success with this I think.
I have noticed that the week off has seemed to set me back a bit as far as how the chamber effects me. I once again feel tired when I come out of it. That is something that had gone away recently.
Also I have the feeling or sensation in my eyes. I guess I would describe it as a light sensitivity type of feeling. That also was something that had cleared up.
I am not surprised these things have returned since I had stopped for a week so early in my treatment. It couldn't be helped. But now I am home for a long long time so look out Posted by SacredHeart (Member # 44733) on :
I don't check this thread much. Is anyone else getting better using this method?
I am starting to think it is the only way to kill these things.
Posted by Phoiph (Member # 41238) on :
SacredHeart...
I hope you take the time to read the thread.
Many people here are reporting benefit, and there are many more that I am in contact with outside of LymeNet.
Posted by Peimomma (Member # 45177) on :
6 months of treating and 230 dives thus far😍. I'm still making gains and of course a few rogue symptoms appear every so often.
3 days last week my hands and arms were going numb at night while sleeping, a symptom I haven't had in months. Knee pain is another symptom that pops in periodically to let me know I'm not well yet.
This week we leave for a 1000 mile round trip drive to Montana for a wedding. This should give me a challenge and see how strong I am at this juncture of my journey. We will split the drive over into 2 days, attend the wedding on Saturday and drive home Sunday. We hope for no family drama at the wedding but who knows what will happen. I feel good and prepared for the trip.
We had a neighborhood BBQ last week and when I talked to people about Lyme disease that had heard of it and/or knew someone with the illness. Wow, what a change from a few years ago when people had never heard of it in WA.
I hope you all are doing well👍
Posted by Peimomma (Member # 45177) on :
Since really starting to exercise in June I started to notice after a few days some fatigue, sore arm pits and a little brain fog. I found this article recently on a board about exercise and the effects it can have on the Lyme which could produce herxing if to much die off happens at one time.
I believe this is what I've experienced from raising my core temp for an extended period of time. Diving every day and then the exercise is like diving 2 times a day in terms of killing and making toxins.
Wonderful timing on this. Thank you very much for sharing!
I've been diving for a number of months now and feel it's time to start slowly adding some excersize. Not so much because I am feeling better but more because I want to feel bette and I feel my body has had some quality mhbot sessions.
I also purchased a high quality juicer last week and have been drinking 3 8oz freshly juiced glasses a day of locally grown organic produce. Mainly vegetables (not much fruit)
This is in addition to my normal meals and not a replacement.
I am so ready to start making some noticeable gains.
Posted by Phoiph (Member # 41238) on :
"...Diving every day and then the exercise is like diving 2 times a day in terms of killing and making toxins..."
mHBOT is actually similar to exercise for your body in several ways. Both raise your cellular metabolism, promoting detoxification at the cellular level, and more efficient transport of nutrients into the cells. They both also produce free radicals, which are necessary for disarming pathogens and raising production of white blood cells, improving immune function. mHBOT also stimulates the production of natural antioxidants.
This is why it is important to go slowly and gradually at first, and not overdo the exercise, because your body is doing a lot of healing work already, and that is where you want your energy to go...not to repairing exercise related micro-injuries.
I know when I first started exercising again, I had exaggerated stiffness and soreness after every activity...but this effect has normalized over time as my body has recovered.
Posted by Peimomma (Member # 45177) on :
Monti that is good news!! I think I started adding some exercise in to my day in month 4 which was May. I started with trying to walk 10k steps M-F and then in mid-May added in light yoga. Def go easy and slow😊
Thanks Phoiph for the explanation, my recent up and downs make more sense now and I need to reevaluate what I'm doing for working out so I don't set myself back in the process.
Posted by Phoiph (Member # 41238) on :
If you were a very active person with an exercise routine established before Lyme it is very difficult to try to not immediately jump right back into the pre-Lyme groove!
But...the exaggerated soreness told me that my body needed more time...and once I accepted that, with moderation everything came back naturally in its own time.
Posted by Monti (Member # 45718) on :
Phoiph...
Do you think I am rushing into the exercise thing? Like I said before, I don't really feel any better yet. But I have been doing 1 hour dives for about 3 months now. (I did miss one week due to a vacation).
I guess I just want to be sure I am not holding up progress by not exercising. Not that I really feel like doing any.
I understand what's being said about starting slow.
Thanks
Posted by Phoiph (Member # 41238) on :
Hi Monti...
I don't think you're rushing into exercise at all...it is a crucial part of recovery.
Just start slowly, with something gentle like walking and yoga, as Peimomma mentioned. Those two exercises are great because they move lymph and increase circulation/oxygenation, and are easy on the joints.
I would definitely give yourself rest days in between to see how you are doing with it and to give time for recovery.
I also remember that it was very easy to injure myself at first (i.e., pulled muscles, etc.) which is understandable when someone had been homebound for years walking on the same level surfaces, doing the same things, etc.
If you're not trying to push, your body will tell you when it is time to increase...
Posted by Monti (Member # 45718) on :
Thank you
Posted by Phoiph (Member # 41238) on :
Interesting website with an archive of hyperbaric articles (by condition):
Well, I survived the drive to MT but really paid for it over the last week😏. No pain, fatigue, GI issues or other issues while on the trip but I crashed when we arrived home a week ago.
No pain but my fatigue and brain fog have been really bad. It must have been the fight or flight that carried me through the wedding and long drive. I'm slowly recovering but boy what a set back in my therapy. I've not done any physical activity since returning a week ago and might wait another week to introduce walking again.
This is not an event I could have missed as it was my husbands son that married but if the future I will definitely evaluate trips because of the decline it can cause when I am so early in my treatment.
On a positive note, I did get to share my Lyme story with a gentleman that knew a woman that has Lyme and it seemed as though I helped him realize this illness is real. I shared this site, Phoiphs website, my videos and other beneficial MHBOT info to help her out. I guess if nothing else it was worth my setback if I can help another Lyme patient find healing😊
Posted by Monti (Member # 45718) on :
Hi Peimomma,
Wow I'm sorry you got such a set back. Didn't u do a trip elsewhere without such a setback or am I confusing things?
My update...
I''ve been up to 1 hour dives since June 13th. I missed one week due to a prescheduled vacation. At this point I really haven't noticed any changes yet other then perhaps some improved cognitive function at times.
But it's only been about 2 months which is nothing when it comes to this treatment. Still very early. I remain very excited!
I started walking last week for some mild excersize. I can only go 1/5th of a mile before I start to feel dizzy. That distance seems pretty consistent which surprised me but I am glad for. Now I have a means of measuring my progress.
I bought a high end juicer a few weeks ago and I am now drinking 3 to 4 8oz glasses of vegetable juice every day in addition to my meals. Things high in nutrients like leafy greens etc.
And I continue on the Zhang Protocol. I can't help but think in a few more months I should start experiencing some noticeable improvements. Even if they are mild.
Posted by Peimomma (Member # 45177) on :
Yes, I did travel to Alaska in June and thrived on and after that trip. I think the differences were.....I flew to Alaska, I slept well, ate well and little to no stress. Unlike this last trip, driving drains me especially driving hours. We slept like poop, maybe 12 hours over three days and it was interrupted too. Because we were in hotels we had no home cooked meals so we ate out and in the area we traveled it was hard to find good meals.
At least once a day we did have a good meal because we brought our protein shake with greens and added a banana. I know I also wasn't drinking as much water because of the travel and schedule we had. I really had no exercise this trip either where in Alaska we were hiking and biking so I was sweating to detox.
Lastly there was family drama that added stress to the situation this trip so I was drained emotionally and physically. Never underestimate how much a stressful situation can set us back.
That is great news that you are doing some walking. Something is better than nothing, even just walking the stairs once a day. You are so right, you are still early in your 1 hour treatment schedule that more progress will come as you get more dives.
I'm a bit disappointed in my set back but I'm also someone that pushes the limits to see how much I can do to get a set back....and so the rest of you know it's not all roses in my world either....lol😁
I know I will get back to where I was before MT, it will just take a few more days to recover. I now also see that it will be 18 months for real until I can see some sort of normal life. This was a reality check for me, I'm still very sick and this trip just gave me that reminder.
Posted by Phoiph (Member # 41238) on :
Peimomma...
I call this a "speed bump"...:)
Thank you for sharing this important experience...I can't reiterate the message enough not to overdo in the early months of treatment even though you may be feeling better.
Travel is one of the most stressful things because everything is different, and your body has to make so many adjustments/adaptations.
I promise there will be plenty of chances to overdo it later on...believe me...lol...
Posted by Haley (Member # 22008) on :
Nice job Monti.
Peimomma - sorry to hear about the set back. You are still my hero, as well as Phoiph
September 3rd will be one year of mHBOT. I have not made the strides as others have. My situation is more similar to the woman that wrote about having the goal of a "little old lady" life. Have not been even close to being able to exercise until just recently, but I have added a couple of things to my protocol.
I started IV ozone (MAH) where they drain the blood out and put it back in. I only purchased 10 sessions, have 2 more to go. I then plan on doing a session once a month.
When I started this treatment my main concern was severe weakness and fatigue, unrelenting, unable to do much of anything. I also still have severe cognitive issues, but at times they do seem improved.
I have to say that my weakness and fatigue have improved significantly. It's quite amazing as I have been dealing with this for years. The crazy thing is - I don't think it is the ozone, but a supplement she suggested - Mitochondrial Energy Optimizer with BioPQQ by lifeextension. WOW... she told me to take 4 a day, but I have cut way back, it's too much (it seems to give me headaches). I am not only able to exercise, but I long to exercise. It's short intervals, but so grateful for that. I hope it lasts. http://www.lifeextension.com/Vitamins-Supplements/item01768/Mitochondrial-Energy-Optimizer-with-BioPQQ?q=energy
I still need to get my brain back. I don't think my brain is permanently damaged because I have moments of clarity, they are brief and short lived.
Posted by Monti (Member # 45718) on :
Haley have you gotten any benefit from the mhbot? If so, about how much?
Thanks
Posted by Monti (Member # 45718) on :
And have you been somewhat consistent in 1 hour dives along with O2? Thanks Haley
Posted by Peimomma (Member # 45177) on :
Yes Phoiph that is exactly what it feels like.... A speed bump that caught me by surprise and shook me up. It was like I hit the bump and my engine quit😎
I'm back to my schedule and the fatigue is slowly resolving. We also had company for the last week since returning home which added to my issues because I was tired but felt like I needed to be "on" if you will. House is empty now, hubby returns to work tomorrow and I get my therapy schedule back on track. YAY!!!!!
Posted by Haley (Member # 22008) on :
HI Monti. I do believe that there has been benefits, but the progress is so slow and subtle sometimes it's hard to see. I am doing one hour a day.
Frankly, one of my problems is my brain. I have a lot of confusion and memory loss, so sometimes I forget the good days lol, but also forget the bad days. So your question seems simple, but I have a difficult time gauging my progress.
I have been writing everything on a calendar and it seems that I am having better days, that's all I can say.
My biggest concern was getting some cognitive improvement and I do notice at times that I am doing things that I could not do before. For example, having a conversation with a super intense person at work was like running 3 triathlons for me, now it seems that I can follow this person and converse with her, it is not such an arduous task now.
Even something as simple as writing this post, in the past would be super confusing, now it comes to me a bit easier.
I'm sure that doesn't help at all, but that's the best I can do for now.
Posted by Peimomma (Member # 45177) on :
Haley I think you have made more progress then you realize, but glad you are writing it somewhere to keep track. I know some days it seems useless but when you look back in a month you will see the changes.
You are doing great at a year, working and seeing gains in brain function😃. I feel the same way about how my brain functions now, I can hold conversations with people and writing on these boards don't wear me out to just think about what to type. I would imagine since you have the stress of working your progress will be slower and it will take longer to get to 100% then someone like myself.
I don't work so no stress there or in commuting, I can sleep as many hours as I need to and exercise to strengthen my body. You should be proud of where you are, I wish I could work but I know it will take me down right now just as quick as this past weekend did.
One thing my brain struggles with is remembering that I'm still sick and I need to take the time for rest and repair.....I can't do what the healthy people are doing YET😁.
Posted by Peimomma (Member # 45177) on :
Oh, I have one more thing to add that I know added to my setback this week.....only for the ladies
My monthly cycle. I've noticed the last two months especially that I have fatigue just before I start😏. This week was no different and will definitely be tracking it more closely in my journal.
Posted by Monti (Member # 45718) on :
Thanks Haley.
You progress sounds like mine at this point. It's really hard to see any real progress but I think cognitively I have improved some.
Of course that depends on the day. Many days I'm a mess. But other days or times during the days I am more aware of my surroundings and more with it.
Again for me though it's only been a couple months. I don't really expect/hope to notice anything for 6 months or worse case a full year.
Are you working full time?
Posted by Haley (Member # 22008) on :
Thanks for the the encouraging words Peimomma.
I say that I "work", but I really just somehow drive myself to my workplace 3 days a week and then do close to nothing, the other 2 days I work from home. I can lie in bed with a laptop if I need to. My employers can see that I am not capable of working the way I did in the past, for some reason they are keeping me. I sometimes feel that I am hanging on by my fingernails to keep my job. If I lose it, I lose my health insurance, my home, pretty much everything. I do not have anyone to help.
I have to keep going. This illness is so bizarre, one day I feel like exercising and the next I feel like I'm dying. I have so much compassion for anyone that has this illness.
Posted by Monti (Member # 45718) on :
Hang in there Haley!! Eat healthy and stick to your treatments.
Posted by Haley (Member # 22008) on :
Thank you Monti. I'm so glad this group is here.
We are pioneers in a sense. I don't think there are many people that have stuck to a specific protocol with mHBOT for a long period of time.
Posted by Peimomma (Member # 45177) on :
I'm back up and running....lol. Feeling back to pre MT trip finally. Ran today, washed 2 dogs, vacuumed, cleaned the kitchen and 3 loads of laundry.
Don't read this next sentence Phoiph😉
I started twice a day again and boy did that make a difference in my energy and brain fog. I'm definitely outside the box when it comes to treating so let me just say "don't try this at home". Lol
The reason I went to 2 treatments is because I was feeling good for part of the day and then the fatigue would set in so I decided to try a second dive and it worked. I'm also back up to 2 CE's a day to detox as well. I won't keep this pace up for to long as I will start to herx.
Posted by Peimomma (Member # 45177) on :
It's been 3 weeks since my return from my Montana trip and I went through a week of fatigue, then pain and last week I had a headache for 4 days. I finally feel like I'm the pre-trip person again and went back to adding in weightlifting 2 days ago with the 1.5 mile run.
Finally got around to recording another video after 3 months and I hope to put another one up soon with me doing some of my activities.
Great documentation, Peimomma! Much appreciation for doing this...it is so valuable to have a video record.
I have posted all your videos on my website...
Posted by Monti (Member # 45718) on :
Nice video Peimomma! You look and sound so much healthier then the first couple.
Posted by joahsark (Member # 20598) on :
Hi Everyone, just doing the final research into choosing a chamber for our home. I have reached out to Phoiph and am waiting for her to respond.
Wanted to ask if anyone has any positive or negatives about the Newtown Hyperbaric chambers compared with the Oxyhealth which I know are the top. I have found only one or two reviews on them which are pretty good but want more feedback before deciding to purchase/rent/lease.
We are planning to treat myself and my 14 year old daughter.
EXTREME brain involvement, constant (20 years) pressure and pain as well as all the joint stuff. But really praying for the brain healing. Any feedback is appreciated. Thanks so much!!
Posted by Peimomma (Member # 45177) on :
Thanks Phoiph and Monti,
I recently watched those first videos and you're correct, what a difference. Looking back in my journal is one thing but to see me back then is so encouraging now. I've come quite a distance and encouraged for the rest of the journey.
We hope to see you up on the big screen one day Monti👍😊
Posted by Phoiph (Member # 41238) on :
quote:Originally posted by joahsark: Hi Everyone, just doing the final research into choosing a chamber for our home. I have reached out to Phoiph and am waiting for her to respond.
Wanted to ask if anyone has any positive or negatives about the Newtown Hyperbaric chambers compared with the Oxyhealth which I know are the top. I have found only one or two reviews on them which are pretty good but want more feedback before deciding to purchase/rent/lease.
We are planning to treat myself and my 14 year old daughter.
EXTREME brain involvement, constant (20 years) pressure and pain as well as all the joint stuff. But really praying for the brain healing. Any feedback is appreciated. Thanks so much!!
Hi joahsark...
Welcome back! I just answered you via email...
Posted by Peimomma (Member # 45177) on :
I was deleting old email this morning and came across a few I thought I'd share. This is an email I sent a friend Feb 2009, a year before my Lyme diagnosis.
I wrote: Ok so health wise, I saw the rheumatoid doctor last week and I'm positive for the HLA-B27 marker which my sister has as well and has had a year long bought with reactive arthritis from it. I wonder if that's what's causing my pain.
I started seeing the trigger point injection doctor last week and laughed historically through the first appointment as it was so painful. I would have cried otherwise. They hurt really bad but are supposed to get better with time????? I go for one today and then again Thursday.
I'm feeling really hopeless with all the pain and no life. This is the last thing I know to try. I'm scared I won't have a life ever again. This weekend I didn't do much as I was very tired. I cried a lot, it seems as my life is work and sleep to get ready for work and sleep and work and …….
I used to do even common things around the house, cleaning and doing errands, now I just don't have the strength or energy to do them. It's like the inside of my body is wasting away and they can't seem to identify the problem. I can't imagine what it will be like in a year or two or five for that matter. Will I be able to work, drive, it scares the crap out of me if something doesn't work soon. I feel the worst for Joe as this impacts his life tremendously, we don't go out much because I'm so tired and sore. He's a trooper and loves me even in spite of my "temporary" issues, I hope.
Then I found a few logs I typed up of my daily routine...yikes!! Keep in mind I was taking all this because someone along the way on the Lyme boards or doctor recommended them to help, kill or heal something. This was written 13 Oct 2012
Lyme disease Medication - Bicillin shot 2 times a week
Morning Before eating - Coffee enema liver detox and pain control - serrapeptase for biofilm buster - candida cleanse tab
Breakfast protein shake with almond milk - Niacin 300mg for depression - Colodial silver - probiotic stomach support - milk thistle liver support - Vit D3 - Adrenal support tabs - garlic tabs blood cleaner - Samento
Lunch - Omega oil - Trace minerals - Grapefruit seed extract cyst buster - milk thistle - B Vitamin - Magnesium - Multi- Vitamin - candida cleanse tab - L-Glutamine for muscle and tissue protection and immune
Dinner - candida cleanse - omega oil - Samento
Before Bed - EDTA for heavy metal detox
One to two times per week - sauna with lemon water 45 min at 127-135 degrees - rifing for any diagnosis I've been diagnosed with on a rotating schedule
Exercise - Walking 2 to 3 miles a day
Food - whole food, no sugar, starch or dairy - minimum of 24 oz of green juice a day - drink a lot of water
What a crazy bunch of supplements and I guess it's why I quit everything finally in 2014. It seemed like every time I turned around there was some new supplement to take to help. I found one from April 2013 that was similar but no Bicillin shots or other medication.
Thought I'd share how crazy my life was just a few years ago.
[ 09-16-2015, 11:44 AM: Message edited by: Peimomma ]
Posted by Phoiph (Member # 41238) on :
Knowing how well you're doing now compared to the recent past makes my day!
Looking back at the extensive and ridiculous list of doctors I saw, methods I tried, and things I took...all for naught...led to my mottos: "less is more", and "bug chasing leads to tail chasing"...lol...
That's why I want people to never give up...to know that wellness is not as impossible, elusive, and distant as it feels at the time...
Posted by Peimomma (Member # 45177) on :
We need those on a shirt Phoiph. I swear I felt crazy and toxic from supposedly taking supplements that would help...HA!!!
Love my less is more now, leaves me time for all the things I like to do like exercise and going for a hot chocolate and pizza on game day 🏈 with hubs👍😍.
One of my husbands coworkers thought he was 42 as they were talking this week and was very surprised to learn he is 50. We are both looking healthier with every month of treatment. And we haven't been sick a day since starting treatment😁
Posted by Tanya R (Member # 41817) on :
Hi all. I have stalked the mHBOT board for about 1.5 years. I also have a chamber (Newtowne 31") and concentrator. I am a patient of LYMEMD (Dr. J). I have been diving on an off since October 2013.
I am a chronic Lyme patient who was DX with Lyme, Bart & Babs in 2008, but sick for 15+ years prior. I did orals and herbals from 2008-2014. I did 4 months of IV rocephin, zithromax and flagyl in the spring of 2014. I felt the best I ever have in my entire life, but unfortunately my insurance company wouldn't cover it anymore. I quit all oral antibiotics in July 2014. Tired of taking pills and my stomach couldn't handle it anymore. I slowly declined again, plus I wasn't diving on a regular basis.
My goal is to journal and try to be more consistent. I was pleasantly surprised to see the author of the youtube videos here. I watched them several times to see what I could expect myself. That gave me the idea to journal so I could have a timeline of how I'm feeling.
I do not have a full time job, but operate my own part time photography business and I'm Mom to a 13 and 10 year old.
Anyways, I hope to be more active on this thread to help encourage others to try mHBOT. In May my pain was at an all time high. The type of pain you have when you have a fever. I am just now being more consistent with my dives and the pain is MUCH better. I still have a list of other symptoms which I hope will eventually go away as well.
Right now I'm experiencing a lot of anxiety / fog shortly after doing my 60 minute dive w/ oxygen. I wonder if I am jumping in too quickly. At one point, I was doing 90 minutes. Anyone else experience anxiety after a dive?
Sorry for the ramblings. I'm having a bad brain day at this moment.
Posted by Tanya R (Member # 41817) on :
joahsark - I have the Newtowne 31" chamber. I highly recommend them and my salesperson was Marie. She is very responsive to questions and I've had a great overall experience. I've had my chamber since 2013 and have had zero issues.
quote:Originally posted by joahsark: Hi Everyone, just doing the final research into choosing a chamber for our home. I have reached out to Phoiph and am waiting for her to respond.
Wanted to ask if anyone has any positive or negatives about the Newtown Hyperbaric chambers compared with the Oxyhealth which I know are the top. I have found only one or two reviews on them which are pretty good but want more feedback before deciding to purchase/rent/lease.
We are planning to treat myself and my 14 year old daughter.
EXTREME brain involvement, constant (20 years) pressure and pain as well as all the joint stuff. But really praying for the brain healing. Any feedback is appreciated. Thanks so much!!
Posted by toyswalk (Member # 45981) on :
Hello, Everyone. Thank you to Peimomma for inviting me to this discussion. I'm very seriously considering mHBOT.
My main physical complaint is limited mobility, so that is also my main purchasing concern. Getting down on the ground (intentionally) would be very awkward for me, getting up off the ground would be taxing and darn near impossible without help. This isn't just a matter of strength, it's also because of how my body is broken and doesn't work.
Does anyone know of links to video showing people getting in and out of portable units? They seem to always be shown on the ground, does it seem reasonable to put unit on a low platform, say chair height? I'm thinking maybe I could sit on the side and get in similar to getting in/out of bed?
What are contradictions for using mHBOT. Did I read something that people with cataracts should not use this therapy?
Thank you and nice to meet y'all!
Posted by Monti (Member # 45718) on :
Hi and welcome. I do know that one of 3 companies that sell mhbots in the U.S. makes one that you basically can walk into and sit in a chair. I believe Summit to Sea is the company.
Posted by toyswalk (Member # 45981) on :
Thank you, Monti. Peimomma sent me a link to one like that. The price of that one scared me! I actually prefer the idea of reclining over sitting and hope that option can work out.
You are still hanging with mHBOT, Monti?
Posted by Monti (Member # 45718) on :
Yes, an hour a day everyday. I've been at that level for 3 months now. I haven't really experienced any improvements yet but 3 months isn't very long for this treatment.
Yeah I looked up that chamber to see the price. Ouch! You can likely find one used for half price. I bought mine used fof about half. Many vendors sell both new and used.
Posted by Peimomma (Member # 45177) on :
Welcome to ALL!!!
So happy to see new people on the board😊. Journaling every day as tedious as it seems has helped me tremendously. Also doing the videos so I can look back and see how bad it was, you don't have to post yours😁. But I would love it if I had a YouTube buddy....lol.
As Phoiph has said "consistency" is a key to my recovery. Probably if I'd quit vacationing I'd be a bit further along in my recovery. I'm going to double down (Phoiph don't read this) and go away for 3 days Oct 8 to a spa with a friend in CA. I'll be flying this time and two days without my treatment.
You all know by now I push the limits to test if I'm really feeling better so I figure we will see what happens with another short trip. I'll post after my return the outcome.
I'm currently at 7 1/2 months of 1 hour dives and some days 2 dives. Currently 267 done.
Haley how are you doing these days?
Posted by Phoiph (Member # 41238) on :
Hi Tanya...
I will answer your PM in more detail, but wanted to share some thoughts on your post here as well...
A few people have told me they have experienced "heightened emotions" right after a dive (including transient anxiety). It seems to be an initial reaction and that goes away after the person has been diving consistently for awhile.
It is unclear why it happens, but I have some theories.
It is possible that in some people, it has to do with blood sugar changes, as mHBOT can lower blood sugar (try eating a little protein before diving).
Also, there are blood flow and metabolic shifts in the brain (and body) that are taking place with mHBOT as a necessary part of healing the hypoperfusion-state, which theoretically could cause some initial reactions.
If someone has an impaired ability to detoxify, is very toxic, and possibly doing a lot of therapy protocols and/or taking a lot of drugs and supplements that their body is mot assimilating well, they can have a reaction if mHBOT is started too rapidly.
Another very interesting thing about the chamber is that over time, it can take someone through not only a physical healing, but also an emotional one, where (sometimes intense) emotions can briefly surface and can then be dealt with. This seems to be similar to how homeopathy works; where physical and emotional "layers" are transverse through the course of healing.
I actually "revisited" some childhood issues through the course of my healing that I thought I had long ago dealt with. The good news is that once those issues are briefly revisited and brought to light, the negative emotion surrounding them really feels "gone"...
Posted by Phoiph (Member # 41238) on :
Hi Toyswalk...
There is definitely a way to use a chamber if you have limited ability to transfer in and out.
I can give you more detail on this, but you can place the chamber on a bed or a similar platform, and rotate the chamber so that the zipper is almost level with the surface of the platform.
That way, you can maneuver yourself in without having to go down to floor level.
Just a FYI, there are also mechanical lifts available for people who are non-mobile.
(Also, FYI, the upright chamber model and manufacturer you are referring to has had serious issues, which you can Google...)
Posted by toyswalk (Member # 45981) on :
Music to my ears, Phoiph! That puts my mind at ease!
Posted by Tanya R (Member # 41817) on :
Phioph -
Thanks for the info. I actually purchased some Lithium Orotate after reading the TreatLyme.net page for psych supplements. I was hesitant to take it the first time as I didn't know how it would make me feel. Right after my 60 minute dive yesterday I felt really anxious. I took one Lithium Orotate and within 20 minutes the anxiety had subsided. Usually the anxiety lasts until I go to bed. I wanted to share this info with anyone suffering from feeling anxious after diving. According to their page, you can take 1 pill 3x day.
Posted by toyswalk (Member # 45981) on :
Replying from full reply comment box so I will be emailed updates to this thread. Learning my way around the forum, guess I will stick around for awhile;).
Hoping to find a place locally to test drive a mHBOT. My main concern is stil access because of my mobility, dexterity limitations. If anyone knows of a person or clinic in the Central Texas area, please let me know.
Posted by Phoiph (Member # 41238) on :
toyswalk...
I will PM you some information...
Posted by toyswalk (Member # 45981) on :
Thank you!
Posted by Haley (Member # 22008) on :
Peimomma - Hi I just saw your post.
Thank you for asking - things are going okay. I had someone visiting for about 10 days and realized that I am capable of doing more than in the past. Yay for those 10 days. I was so nervous about this visit and thought that I would not be able to do anything. So - I do think there is some progress.
I have to add that the IV ozone definitely helped, but even if I could afford it (which I can't) I think that it would be hard on the body and the veins over time. I plan to do IV ozone once a month and continue with my chamber every day.
Not much of an update, but I do believe that I am moving forward very slowly.
Are you still going in the chamber twice a day?
Posted by Peimomma (Member # 45177) on :
Haley that is great news that you see progress. Glad you were able to enjoy your company. 10 days is a long time to entertain and be "on".
I'm back to one dive a day, I could only dive for 6 days at 2x and then the herx set in at 0100 and woke me up so I went back down to one a day. I decided to go to 2 because after the trip I couldn't shake the fatigue so getting the extra O2 helped get me back to where I was before MT.
Thanks for the update 😊👍
Posted by Peimomma (Member # 45177) on :
I hope everyone is well💚
I thought I'd post an incident that happened this last week. On the 16th I was mowing the lawn and afterwards I noticed my left upper arm was itching. I thought it was a mosquito bite so I applied the homeopathic remedy Ledum. The itching stopped and I went on about my day. The next day I did a body scrub and noticed that bite area a little itchy again so I applied another dose of remedy.
I finally got a glimpse of the bite in the mirror on Friday and to my surprise it was about 2-3 inches in size, swollen and reddish. At that point I thought a spider bite and took some homeopathic remedies for the possible bite. It did nothing so then I thought maybe a black widow spider bite.
I finally posted a picture in a local group to see if anyone could give info on possible NW bugs that would leave a bite like this. People suggested it was a lyme rash and comparing the picture it did look similar. That same night the bite changed and was swollen and bright red and my doctor then thought it might be infected.
The next morning it was back to the lyme looking bite so I drew a line around it with a black marker to keep track of the size. However the following morning it changed again and started to disappear. This was over a weeks time from the start of the bite to the beginning of disappearance.
I went back to my journal and sure enough the night I got the bite on my arm I didn't sleep well, and had some night sweat, some pain, some fatigue and all this carried on until the following Wednesday.
After looking back at my journal, where I was outside in shirtsleeves on a sunny day I wasn't sure it was a bug bite but possibly some of the old vaccines I had received in the military. It was in the exact area they were given and with the constant change of the bug bite it seemed to make more sense that maybe the homeopathic remedy and mHBOT have pushed this to the surface.
I guess I'll never know for sure except to watch for future episodes in the same area. I'm wondering if others have experienced any old injuries or illness come forward?
[ 10-13-2015, 05:40 PM: Message edited by: Peimomma ]
Posted by mbdq (Member # 26277) on :
Peimomma- Within the first few weeks of starting mhbot, I broke out in multiple bright red rashes on my back that resembled tick bites. I took a picture for my own sake. I felt like it was old tick bites coming to the surface. Also, I had botox for one year at one point to try and help my debilitating migraines. The botox didn't help, but I feel the hbot helped move "leftover" botox out of my body. I had a few bizarre weeks where I could move my eyebrows more and I felt like I needed to keep moving them. Crazy!
In reading your update above, I was afraid you might have been bit again and I certainly hope not! I do think I was bit again this summer about two months ago. Started as small raised itchy bite and progressed to a red rash with two shades of circular red. I've had an increase a bit in some symptoms and it is disconcerting to say the least! My LLMD thought it was a tick bite and wanted me back on antibiotics. I started with some mepron but after a week, I had enough. I really felt it wasn't the right path for me right now. So I stopped the mepron and I have continued with the hbot and also adding weekly acupuncture.
So despite this scare, I am trying to focus on healing, healing, healing. Also doing some emotional work I think I really needed. Hoping it will all be enough to keep me moving forward. I am at 557 hours. Better than I used to be health wise but striving for 100%. Seen some improvements in exercise tolerance, so that is good.
Posted by Peimomma (Member # 45177) on :
Mbdq
Wow, that's good to know. I also took pictures of the area on several occasions. I find it doubtful that mine is a tick bite here in WA state in my backyard. I know we have lyme here but just not as prevalent as other places.
Regardless I would treat the same way with mHBOT so I'm settled about it now and will check my numbers on my 1year mark with oxygen therapy. I think I'll print these pictures though to putt in my journal if they pop up again.
[ 10-13-2015, 05:44 PM: Message edited by: Peimomma ]
Posted by Phoiph (Member # 41238) on :
After several months of treatment, the place where the nymph tick had originally attached on my wrist became red (like a small mosquito bite), but not nearly as pronounced as it was originally. I also had old scars become more prominent at times.
It fits my theory that mHBOT healing phases follow a similar pattern as healing with classical homeopathy...bringing the inside toward the surface, and revisiting symptoms in a reverse order as the layers are transversed...
Fortunately, it seems the revisited symptoms are less severe and shorter-lived than the first time around...
Posted by Charles12 (Member # 24729) on :
Not to sidetrack the discussion... but, are there any online resources for finding mild hbot clinics?
I live in central Virginia and the only ones I've found are a bit of a drive.
Alternatively, how much should I expect to pay for a rental? And would a rental include the O2 compressor?
Posted by Phoiph (Member # 41238) on :
Charles12...
I will PM you with some information and options...
Posted by joahsark (Member # 20598) on :
Just sent my payment off to get my chamber in the house. Feeling hopeful (a bit overwhelmed) and cannot wait to begin journaling and sharing my daughter's (14 yrs old)and my progress. Unlimited "Thank you's" to Phoiph for continuing to support and guide me through these first steps! When it arrives I will definitely be reaching out to you again for help with the set up etc. as I have never even been near one in person.
Joahsark Posted by Phoiph (Member # 41238) on :
Congratulations, joahsark...
I will be glad to continue to help, as I know will everyone here...
Posted by Monti (Member # 45718) on :
I am excited for you both!!! Just be consistent and don't expect anything to happen to quickly. It may start to help quickly but more likely will take a number of months.
I have to say I look forward to laying in my chamber at the end of every day. I'm tired most of the time and I have no problem spending a quiet hour laying down in peace.
Posted by joahsark (Member # 20598) on :
Thank you Phoiph and Monti. Your support is so appreciated. We are definitely committed for the long haul. Will have it 6 months to start and then purchase if anything at all is noticed.
Blessings!!
Posted by Monti (Member # 45718) on :
That sounds like a great idea. I know for me it took about 6 weeks to build myself up to one hour dives. And in some ways it's once you hit the one hour mark that the benefit really starts to develop.
Try not to miss a single day. I had a 1 week vacation and I felt like it set me back a month.
I'm almost 3 months at 1 hour dives and I believe I am just beginning to see some very mild improvements. But my attitude is don't expect anything for 6 months-12 months. With this attitude I won't get discouraged. At least not for a year haha! But I believe in a year I will be pleased and see some worth while gains.
Posted by Peimomma (Member # 45177) on :
Welcome to Team O2 joahsark 💚💚
We are all here for you and your daughter 😊 on this journey.
I have a standing invitation if you and your daughter want to make videos😁 and join me on YouTube. I'm at 282 dives already. It goes by quick when you are keeping track of the number of dives, journaling every day and enjoying the gains month after month.
The hardest part these days is just doing the dive every day. When it's nice out I have to make sure I leave time to dive. We are having beautiful crisp sunny days here so I've been squeezing in motorcycle rides with the hubs.
Posted by joahsark (Member # 20598) on :
Thanks Peimomma! I may take you up on that invitation if I ever feel comfortable enough to be seen on camera. LOL.
Definitely will be disciplined about making the time and journaling.
Best, Penny
Posted by Peimomma (Member # 45177) on :
As promised here is my update from my 3 day trip to the Napa Valley. It was almost identical in length to the MT trip, left Thursday afternoon and arrived home Sunday afternoon but I flew this trip.
I ran and lifted weights the morning I left and was up until 11:00 chatting with friends. The first night I slept ok, the second night was bad sleep due to a snoring roomie and the third night I slept well.
I drank wine 2 of the three days and ate out for every meal. I was able to sit in a dry sauna 2 of the days and had a massage one day as well to detox. I feel great after arriving home and went right back to my routine and working out.
My friend had a cold/flu before and during my visit and we bunked together and even shared wine glasses at the tastings and I have no signs of illness. She on the other hand is off work today as she is still sick. I told her she needs some O2 therapy...lol
On a super cool note, Joahsark and I figured out we only live about 15 mins apart in neighboring towns.
Posted by Phoiph (Member # 41238) on :
Peimomma...
So...no further reaction to the bite on 9/16?
Posted by Peimomma (Member # 45177) on :
It is still there on my arm, the red dot where the bite/injection site is and only when I've been in the chamber for 20-30 min does it itch a little.
Posted by Peimomma (Member # 45177) on :
GREAT VIDEO!!! Keep going strong!
Posted by joahsark (Member # 20598) on :
Chamber arrives tomorrow!! Anxious about the learning curve. Really hoping I can figure out the set up and use. Thank you to those who sent me links to videos! Can't wait to start journaling for my daughter and I.
Posted by Phoiph (Member # 41238) on :
No worries, Joahsark...you can email me with any questions...
We should also go over how to work up to full pressure slowly...
Posted by Peimomma (Member # 45177) on :
Yes, please go slow, don't take days off and follow Phoiph's advice👍😍
I would not recommend my path as I have a tendency to push the limits to see what's working for me and what's not, will something set me back or won't it....
I fully believe everyone using mHBOT will get to recovery, although it's a little different pace for each person. Dive every day, journal every day and soon enough you will see the gains.
Posted by joahsark (Member # 20598) on :
Thanks again Phoiph and Peimomma! I'm definitely going to start slow, the only major herx that worries me is increased cranial pressure which is a 24/7 major problem for with flares that would put any "normal" person, not us, of course, in the hospital. Of course I want to be extra careful with my 14 year old daughter too. I'll definitely be reaching out you both.
Best and sooo much gratitude,
Penny
Posted by Peimomma (Member # 45177) on :
Good Morning mHBOT Family😎
My mom sent me a message after she watched my video letting me know when she saw me running on the treadmill she began to cry. She is the only person who has seen our Lyme life behind closed doors as she stayed with us for a month the year my depression and symptoms were off the chart. She was here when the paramedics came and took me away after a seizure. She knows how huge this progress is for me and she was crying tears of joy for this transformation.
Yesterday I went to my dentist for another cleaning and checkup and my hygienist ask how my O2 treatments are coming along. As I told her about my newest video her eyes began to fill with tears of joy as she has watched me for the last 5 years go through this Lyme process. She was so happy for me and the progress I am making with mHBOT.
I went back and started looking at my journal writings from the first three month of diving and I have to say I was still having just ok days. Compared to now, almost 9 months of treating it's a lot different. I'm only a third of the way to the 2 year treatment plan....I wonder what life will be like with 900 dives??
Congrats Penny and I enjoyed the arrival photos of your chamber. It's fun to look back on "history" after you are much further along in treatment. Do the before photo😁 and of course the selfie in the chamber....lol
Posted by Monti (Member # 45718) on :
Good stuff Peimomma Posted by toyswalk (Member # 45981) on :
Anyone here in Central Texas? It would be nice to connect with someone in my area.
Monti, I've got my eye on you. Watching your progress with hope.
Posted by Monti (Member # 45718) on :
Thank you toyswalk Posted by whitmore (Member # 28721) on :
Looking into these machines. It appears that you need an Rx to purchase one. Has anyone managed to get a doctor to prescribe one?
Posted by Peimomma (Member # 45177) on :
Yes my doctor did after providing her with some supporting documentation. Phoiph is very good at helping that process along.
Posted by Phoiph (Member # 41238) on :
I just finished an interesting conversation with a man who built a chamber for his 68 year old wife with a traumatic brain injury.
So far, she has done 12 sessions of mHBOT in a clinical setting, and 10 in the home chamber.
She had an interesting thing happen. When she was in 6th grade, a classmate stabbed her in the shoulder with a pencil, and the lead broke off and became imbedded. In spite of different efforts over the years to remove it, it has stayed embedded under scar tissue.
Last night she felt what she thought was an itching insect bite, but when her husband looked at it more closely, he found the piece of lead coming through the surface of her skin, and removed it easily.
This reflects my and other's experiences posted here, regarding old scars, bites, injection sites, etc., coming to the surface and becoming visible, then disappearing with mHBOT treatments.
It also mirrors the path that is considered "true healing" in homeopathy (e.g., traversing layers, often from the "inside out")...
Posted by Peimomma (Member # 45177) on :
Wow Phoiph that is fantastic😊. Thank you for posting this information.
Now I'm curious about the chamber he built, he must be quite handy.
Posted by Monti (Member # 45718) on :
Phoiph that is incredible!
Posted by Phoiph (Member # 41238) on :
Another example is from a woman with Lyme and coinfections who doesn't post here, but was one of the most ill people I've come across yet...
She and her doctor both called me over a year ago as a last resort, as they were completely out of options, and had vaguely heard of my recovery through the local Lyme support group where I spoke about my experience.
For many, many years pre-mHBOT she has had what she calls "bowls of infection" under her skin...some deep, some superficial, some smaller, like marbles, some large, like a "bowl".
During phases of mHBOT treatment over time, she has watched these surface and break open as sores on her skin, scalp, and inside her mouth, then heal. Sometimes the "deep bowls" which were older would not surface, but on occasion she would feel one of them break open inside her, and would become very, very ill afterward for days...but then once recovered, would be better than before the episode.
She is not yet 100%, but the last time I spoke to her she had coordinated her home remodeling and sale, and was able to move to another state, which she had wanted to do after years of being home and bedbound...
You can't make this stuff up...
Posted by Haley (Member # 22008) on :
What do you mean by bowls of infection? Are they lumps on her skin?
Posted by Phoiph (Member # 41238) on :
She described them as either lumps under her skin, or deeper masses (i.e., "bowls") that she was able to feel for years and that were painful.
For example, she described one in the area of her throat/upper chest that felt constricting and would affect her swallowing reflex at times, making her gag.
The way she described them surfacing on her skin made me suspect Morgellons, although she never described seeing fibers.
There was no end to how this woman suffered.
My point was that after doing mHBOT for a time, whatever they were started to break up and come to the surface...
Posted by Peimomma (Member # 45177) on :
Thoughts and opinions anyone??
Now that the weather has changed in the great Northwest I have noticed a little joint stiffness. The last three days When in the chamber the pain disappeared so yesterday I decided to do 2 dives and it fixed the issue.
I was talking to my husband about the possibility of my body using more O2 since the weather has gotten much colder and damp in the last 2 weeks. I did a little research on the internet and found several references to cold weather using more O2.
I'm wondering if anyone has noticed a similar experience when the weather gets colder. I decided to take a break from exercise this week until I can figure out my treatment schedule to keep my O2 level high enough to keep the pain away. I definitely don't want a set back.
Posted by toyswalk (Member # 45981) on :
Phoiph, I think the word for the woman's skin condition is 'boils'. My step father dealt with those and they seemed miserable.
Posted by Phoiph (Member # 41238) on :
That's what I thought at first...(I questioned her about that)...but these were definitely not typical "boils" according to her...
Apparently not something her doctors had seen or could explain either...
Posted by Haley (Member # 22008) on :
My boyfriend has lipomas. That's why I asked. He has had them a long time, they are harmless and don't hurt.
Posted by Phoiph (Member # 41238) on :
I will post an email of hers with a description if I can get her permission first...
Posted by Tanya R (Member # 41817) on :
Hey all. I wanted to give an update on how I'm doing. I am on dive 40, though technically I have over 400 hours in my chamber. A few months ago I felt horrible again. I had quit all meds and basically gave up. I wasn't dedicated to using my chamber. I came across Peimomma's YouTube videos and it reignited my hope for mHBOT and my Lyme. Thanks to the help of Phioph I did a slow reintroduction to my chamber and am now up to 60 minutes a day with full oxygen.
Some things are better such as my anxiety and mood. I feel like I had a major relapse of my babesia over the past few months, which is contributing to a lot of other symptoms. I have restarted my cryptolepis herbal (RX from LymeMD from InfuServe) and am currently only tolerating 5ml 1x day. I have to work up to 5ml 3x day.
Thanks again to everyone for posting their progress.
Posted by Tanya R (Member # 41817) on :
Quick question. For those using the chamber, how many of you have Babesia? And is it Microti or Duncani?
I have Duncani (tested positive through lab and also diagnosed via a gemsia stain blood smear).
It is what causes my most severe symptom, fatigue. I would consider it my worst symptom as there is nothing you can do to help, no matter how much sleep. My doc prescribed me Tramadol for pain and I've found that it acts as a stimulant and really helps on those days where I can barely put one foot in front of the other.
Posted by Haley (Member # 22008) on :
Dear Tanya.
Phoiph is the expert on this. I know she thinks the chamber will help Babesia too as it helps the immune system.
I have been in the chamber an hour a day for just over a year. I believe that my remaning infection is malarial/parasitic /protozoan. I believe it needs to be treated in addition to the oxygen. This I just my opinion. I have no regrets buying my chamber and I do believe I am getting well due to mhbot. I will see some one on Wednesday to discuss getting on something for my remaning infection.
My main remaning symptoms are severe fatigue, head and face pain and cognitive problems. I do think the cognitive stuff is s bit better.
Posted by Tanya R (Member # 41817) on :
Haley -
My doc just wrote a blog post touching on mHBOT and Babesia. I'm trying to treat just with the herbal Cryptolepis. I'm going to give it a few months and then see how I'm feeling, I'll decide whether I'll see my doc about adding Coartem & Malarone.
I'm so glad to hear that you have no regrets re mHBOT, although I know you are still struggling. I admire that you have never given up on it and have always been encouraging to others here. I KNOW you will get there!
Tanya...I can tell you that I had severe Babesia when I started mHBOT as evidenced on a blood smear. I had horrible symptoms. mHBOT took care of it completely over time.
Posted by Tanya R (Member # 41817) on :
Phoiph -
That is encouraging. It's hard to realize that this is such a slow journey. I want to be at the end already. I wake up every day wondering how I'm going to feel.
Posted by Tanya R (Member # 41817) on :
How many of you deal with heart palpitations? Or low platelets?
I saw a cardiologist last May and was diagnosed with Mitral Valve Prolapse. Not sure if that is related to Lyme & Co's. I could have worn a 24 hour heart monitor, but never went in for it. I just feel like most doctors are clueless to Lyme and Co's.
I am also seeing a hematologist every 3 months due to low platelets. I also received 5 weeks of IV iron to raise my ferretin.
Posted by toyswalk (Member # 45981) on :
I'm going for my first dive today. That's all, just thought I'd share :-)
Posted by Monti (Member # 45718) on :
We will be there with you Posted by Trinity333 (Member # 46923) on :
Hi everyone,
I'd like to join in the conversation
With the help of phoiph, whom I contacted via a different site, I purchased my chamber in January of 15. I used it daily until March when I became sick for a month with the yearly "crud" going around. My immune system couldn't fight it off and I was out of the chamber for 6 weeks because I couldn't clear my ears.
I struggled to get back into the groove over the summer. Northern CA summers are hot and the chamber became what I termed a "hot coffin". I have used it for the last few months, but not religiously.
3 days ago, I made a commitment to get back in, and commit to using it daily.
I'm excited to see another success story (peimomma!)
Did the chamber help me over the last 10 months? Even though I haven't been diligent?
Well, at the same time I bought the chamber, I went off the antibiotics that I'd been taking for 18 mos (pills, shots and IV), took my estrogen patch off that I was using for menopause symptoms and changed my diet pretty dramatically. Like most of you, I've done it all: sauna, coffee enemas, biomat, foot baths, castor oil packs, chiropractic, every potion and pill imaginable. I can't speak to whether or not the chamber has helped over the last 10 months because there was so much I changed.
I did have a few awesome weeks over the summer and was able to get out and do a few things I haven't done in years. In August I backslid after taking cholestyramine for mold as prescribed by my LLND.
I will say this: I am FAR better OFF the antibiotics than I was ever able to achieve on them. My goal is to stay off of them.
I'm ready to commit to being in the chamber every day. I'd like to join you guys on your journey!
Posted by Peimomma (Member # 45177) on :
Dive 314 in the books
Welcome back Tanya R and Trinity333
It's awesome to have more people chiming in on the thread. I hope to see some positive posts 😊.
I was going to combine abx when I was first looking into mHBOT but after reading this thread in its entirety I felt that those not doing abx had less complications then those just using the chamber??? Just my opinion.
I'm quickly approaching 47 and my weight seems to creep up a pound or two each year and my diet hasn't changed except I cut more out to try and keep the weight off. Last week I ran across a book, The Plan and started following the 20 day process of finding the specific foods I'm reactive to. Anyone read this book? Anyway, I found on day 2 that I'm reactive to almonds and I was eating those every day. And red wine, day 4 but I'm not a big red wine drinker so no big deal. However, chocolate is a thumbs up👍.
Trinity333 my chamber is on the second floor of our house on the side the sun hits all day in the summer. I treat as early as possible and put a fan in the window to bring cool air in the room. I also have a fan blowing the hot air out of the room from the concentrator that sits near the entry to the room. In the chamber I have a third fan to blow air on me.
I'm glad my videos inspired you both to get diving again.
Posted by Phoiph (Member # 41238) on :
I posted this article on the "stem cell" thread...thought it also might be of interest here... _____________________
Penn Study Finds Hyperbaric Oxygen Treatments Mobilize Stem Cells Recovery of Injured and Diseased Tissue the Ultimate Goal
(Philadelphia, PA)- According to a study to be published in The American Journal of Physiology-Heart and Circulation Physiology, a typical course of hyperbaric oxygen treatments increases by eight-fold the number of stem cells circulating in a patient's body. Stem cells, also called progenitor cells are crucial to injury repair. The study currently appears on-line and is scheduled for publication in the April 2006 edition of the American Journal.
Stem cells exist in the bone marrow of human beings and animals and are capable of changing their nature to become part of many different organs and tissues. In response to injury, these cells move from the bone marrow to the injured sites, where they differentiate into cells that assist in the healing process. The movement, or mobilization, of stem cells can be triggered by a variety of stimuli - including pharmaceutical agents and hyperbaric oxygen treatments. Where as drugs are associated with a host of side effects, hyperbaric oxygen treatments carry a significantly lower risk of such effects.
"This is the safest way clinically to increase stem cell circulation, far safer than any of the pharmaceutical options," said Stephen Thom, MD, PhD, Professor of Emergency Medicine at the University of Pennsylvania School of Medicine and lead author of the study. "This study provides information on the fundamental mechanisms for hyperbaric oxygen and offers a new theoretical therapeutic option for mobilizing stem cells."
"We reproduced the observations from humans in animals in order to identify the mechanism for the hyperbaric oxygen effect," added Thom. "We found that hyperbaric oxygen mobilizes stem/progenitor cells because it increases synthesis of a molecule called nitric oxide in the bone marrow. This synthesis is thought to trigger enzymes that mediate stem/progenitor cell release."
Hopefully, future study of hyperbaric oxygen's role in mobilizing stem cells will provide a wide array of treatments for combating injury and disease.
I've been off the Grid for a couple years, but I'm resuming my HBOT dives. It's been quite a year.
Back in January I started the LDN (Low Dose Naltrexone) Protocol, to relieve my Lyme etc symptoms. It kicked my pain levels down from an 8 to about a 3-4 (though stuff's been kicking up again over the past month because of ABx, getting off Elavil & starting up my HBOT dives again.) As a result of being on LDN I have been able to extricate off Lortab, Ultram, Cymbalta, Pyridium (for the bladder urgency), Klonopin (last year. Ugh! Nasty sleep drug to detox!). The last 2 were 1/4 tab Xanax (for sleep) and FINALLY 100mg Elavil at bedtime for sleep. The chief goal for me has been a clearer head & less brain fog. The Elavil was cold turkey 2 months ago. I had left my new Rx in the car and was too beat to go get it at bedtime. When I woke up the next morning it was, Oh my Gosh my Mind is so clear I am Never going back! I then stood up out of bed & my #2 completely evacuated (courtesy of cold turkey Elavil).
It's been like a return from 20 years in prison for my brain. The other symptoms of Lyme pain, fatigue etc are still there. Also My sleep and my bowels are whacked. The sleep Dr said that my brain's neurons are permanently changed & will not be able to sleep w/o synthetic assistance. She also suggested going back on less Elavil; I said Nope, not gonna happen. Also the bowels are whacked somehow from being on Elavil for 20 years. That's a work in progress that I'm still trying to figure out. Though an occasional Ultram helps bind me up I can't let that be a regular thing.
Paraplegics and our neurogenic digestive tract; ever a topic of table talk- .
Right after quitting the Elavil I got hit with an ESBL E.Coli UTI, something tenacious like MRSA. I've been through 4 rounds of Antibiotics over 2 months- 3 of Macrobid and a final 1 of Levaquin. The Macrobid was so bad I spent most of it in bed; though not AS bad the Levaquin was still pretty bad. I did not realize it until last night that the 2 ABx were hitting the Lyme disease- MacroBid the Bart & Levaquin the Babs.
So, all that said I'm finally back in my Respiro, the Blue Womb, 1 hour a day. I'll keep pushing for 6-7 days a week for now, maybe taking Friday night's off for a bit so I can have an easier Saturday.
When I went thru my first set of 10 Dives I had one day of perfect bliss right after the 10th dive. So since it was that way before I'm praying that the rhythms of wax and wane begin again around 10 dives. When I first did my introductory 10 Dives 4 years ago at my LLMD's there were no H2O masks in the chamber! I held the cannula close to my nose much of the time but don't know how much that helped- of course I complained.
So that's my Journey update. Phase 1 was the LDN & getting off my brain fog meds. Phase 2 is getting back on the Hyperbaric wagon.
Over at Health Rising Cort wrote an article on how our Reward pathways, the 'runner's high', the bliss,the Joy, are somehow blocked or somewhat suppressed deep in the brain. Titled, Are All the "Feel Good" Pathways Blocked?" (October 21st), there could be a blockage in the basal ganglia and dopamine pathways. That hit me like a lightbulb. If there is inflammation going on in that nexus, then Hyperbaric Oxygen would be treating that inflammation, giving me that One Good Day of Joy after 10 Dives.
Posted by Beloved (Member # 37415) on :
Note to Phoiph: so the Nitric Oxide stimulated in HBOT also helps break down the biofilms?
Posted by Beloved (Member # 37415) on :
Note to Peimomma and Trinity333-
at my old apt my Chamber was in the unheated/ no AC sunroom. In the summer I could put 2-3 blue freezie blocks inside. Even do a pre-chill by putting the blue blocks in, zipping it shut for an hour then do my dive. It's my understanding that the interior can heat up 15° higher than the room's air.
Posted by Beloved (Member # 37415) on :
quote:Originally posted by Beloved: Greetings All,
I've been off the Grid for a couple years, but I'm resuming my HBOT dives. It's been quite a year.
Back in January I started the LDN (Low Dose Naltrexone) Protocol, to relieve my Lyme etc symptoms. It kicked my pain levels down from an 8 to about a 3-4 (though stuff's been kicking up again over the past month because of ABx, getting off Elavil & starting up my HBOT dives again.) As a result of being on LDN I have been able to extricate off Lortab, Ultram, Cymbalta, Pyridium (for the bladder urgency), Klonopin (last year. Ugh! Nasty sleep drug to detox!). The last 2 were 1/4 tab Xanax (for sleep) and FINALLY 100mg Elavil at bedtime for sleep. The chief goal for me has been a clearer head & less brain fog. The Elavil was cold turkey 2 months ago. I had left my new Rx in the car and was too beat to go get it at bedtime. When I woke up the next morning it was, Oh my Gosh my Mind is so clear I am Never going back! I then stood up out of bed & my #2 completely evacuated (courtesy of cold turkey off Elavil).
It's been like a return from 20 years in prison for my brain. The other symptoms of Lyme pain, fatigue etc are still there. Also My sleep and my bowels are whacked. The sleep Dr said that my brain's neurons are permanently changed & will not be able to sleep w/o synthetic assistance. She also suggested going back on less Elavil; I said Nope, not gonna happen. Also the bowels are whacked somehow from being on Elavil for 20 years. That's a work in progress that I'm still trying to figure out. Though an occasional Ultram helps bind me up I can't let that be a regular thing.
Paraplegics and our neurogenic digestive tract; ever a topic of table talk- .
Right after quitting the Elavil I got hit with an ESBL E.Coli UTI, something tenacious like MRSA. I've been through 4 rounds of Antibiotics over 2 months- 3 of Macrobid and a final 1 of Levaquin. The Macrobid was so bad I spent most of it in bed; though not AS bad the Levaquin was still pretty bad. I did not realize it until last night that the 2 ABx were hitting the Lyme disease- MacroBid the Bart & Levaquin the Babs.
So, all that said I'm finally back in my Respiro, the Blue Womb, 1 hour a day. I'll keep pushing for 6-7 days a week for now, maybe taking Friday night's off for a bit so I can have an easier Saturday.
When I went thru my first set of 10 Dives I had one day of perfect bliss right after the 10th dive. So since it was that way before I'm praying that the rhythms of wax and wane begin again around 10 dives. When I first did my introductory 10 Dives 4 years ago at my LLMD's there were no H2O masks in the chamber! I held the cannula close to my nose much of the time but don't know how much that helped- of course I complained.
So that's my Journey update. Phase 1 was the LDN & getting off my brain fog meds. Phase 2 is getting back on the Hyperbaric wagon.
Over at Health Rising Cort wrote an article on how our Reward pathways, the 'runner's high', the bliss,the Joy, are somehow blocked or somewhat suppressed deep in the brain. Titled, Are All the "Feel Good" Pathways Blocked?" (October 21st), there could be a blockage in the basal ganglia and dopamine pathways. That hit me like a lightbulb. If there is inflammation going on in that nexus, then Hyperbaric Oxygen would be treating that inflammation, giving me that One Good Day of Joy after 10 Dives.
Posted by Peimomma (Member # 45177) on :
Welcome back Beloved!!!
The more the merrier 😁
Thank you for that awesome tip with the ice packs, I will be using that one next summer.
Posted by Phoiph (Member # 41238) on :
"...my brain's neurons are permanently changed & w/not be able to sleep without synthetic assistance..."
I don't buy it! My neurologist/HBOT clinician friend says that sleep architecture is very complex, involving many brain areas to be working together in synch. Healing the brain takes time.
Sudden, severe insomnia was one of first symptoms I experienced. Not even normal doses of anesthesia could put me out (I would awaken during procedures and needed doses high enough for someone over twice my weight). No amount of sleep medication worked; and I went without sleep for over 7 years.
Although it was one of the last symptoms to improve, as my brain healed over time, sleep gradually returned.
Posted by spinning122 (Member # 42223) on :
Hello everyone! An update from me...
I am now 600 dives in, 1 hr every day. I continue to have persistent fatigue after normal daily tasks like going to school, sometimes migraines, random swelling, brain fog, mood swings, anxiety, and depression/apathy.
I notice horrible mood swings, a crop of pimples in my mouth area, and extra swelling, constipation, and blood sugar problems whenever I eat anything with salicylates and it is frustrating. I consume mostly bone broth, sardines, grassfed meats and organs, and eggs now. I know it sounds dreadfully unbalanced, but whatever keeps me from feeling worse, for now I guess.
I have found that when I am severely sick, my adrenals ache. I have added b5 (pantothenic acid) and I feel so much better when I supplement that... makes me wonder what's going on with the adrenals (obviously shot from battling chronic infection for so long).
However, I took the saliva test a while ago, and everything came back "normal". I noticed a change (just coincidence? I don't know) in how my skin reacts to the sun. I would get blistery rashes after just a tiny amount of exposure to the sun (we are talking something like 3 minutes) so I would have to work my dog walks around that, and go early in the morning or late in the evening.
Since the supplementation (or is it long-time mHBOT therapy?), I no longer get rashes even though I walk home from the bus stop in full noontime sun for 15 minutes at a time.
Not sure where I'm at now. I am obviously going to continue my daily hour-long dives, I don't feel the need to be on any antimicrobials.. but I am also frustrated because I want to be normal (whatever that is) without all these little invisible handicaps that keep me from reaching my full potential.
Posted by Peimomma (Member # 45177) on :
Spinning122
Sounds like you are struggling😒. Do you eat any vegetables? When we don't get enough nutrition to run our bodies things start to snowball and new symptoms appear as old ones stay around and possibly get worse. Lack of vitamins and minerals can have negative effects. Do you supplement with anything? Also in order for the body to repair it needs those vitamins, minerals and proteins in a healthy balance.
What kind of an eating plan are you on? Many vegetables and seeds have protein as well as much needed vitamins. I hope things turn around soon.
Posted by Peimomma (Member # 45177) on :
Here's a list of general symptoms that can occur from deficits that I found on a site I will post with the basic vitamins listed.
Pallor (pale skin) fatigue weakness trouble breathing unusual food cravings hair loss periods of lightheadedness constipation sleepiness heart palpitations feeling faint or fainting depression tingling and numbness of the joints menstrual issues (such as missed periods or very heavy cycles) poor concentration
Posted by Peimomma (Member # 45177) on :
Here's the website, and there are many more with more information.
Can you remind me if you have or are treating thyroid issues?
Also, I know you are not on antimicrobials anymore, but any other meds currently?
I think your improvement with B5 is a clue (I'm going to ask my methylation guru friend about this...)
I appreciate that you have come a very long way (as you are now able to go to school, etc.), but are definitely struggling and not yet experiencing "normal health"...
Posted by spinning122 (Member # 42223) on :
Peimomma, thank you for that information, I appreciate it!
I have been tweaking my diet for years, grain-free sugar-free, (paleo I guess you'd say), did lots of juicing fresh organic vegetables, soaked seeds/nuts, avocados, sardines, bone broth etc. and never felt quite right.
Maybe about a year ago, I started getting horribly sick with severe acne, weird flu-ish symptoms (not my normal Lyme Babesia Bartonella etc sick) and I found that I had become severely salicylate-intolerant. So I as I cut out the worst offenders, I felt better and better.
As far as supplements go (I know we should get most of what we need from food and all the foods I eat are extremely nutrient-dense), I take probiotics (from custom probiotics, florastor, prescript-assist), magnesium, Concentrace in my water, Ester-C, vit D, b-complex once or twice a week, and most recently B5.
Phoiph, yes, a couple months back I had that terrible thyroid attack where I felt like it was swollen and choking me, painful, cold, gaining weight. My doctor had the levels checked and I had a high TSH (still normal in their charts but I know those numbers are rubbish) and low t3 so I am taking t3 now (which makes me feel better). My numbers are back down to normal.
I'm not on any other meds/supplements besides the t3 and supps mentioned above.
Posted by Beloved (Member # 37415) on :
3 Dives, I took 2 days off from die off. I'm back to diving tonight. My main symptom is bad dragging. After 8 hours sleep I went back & slept another 4. I hope the heavy drags are the worst of it.
Since getting off Elavil & even after ABxs I know my diet is also suffering. Not enough appetite. And If I eat heartily then I'm hitting the bathroom with urgency. A lot of canned soups, a few frozen entrees, Some Chinese, Thai & Vietnamese take out as I can squeeze into my budget (craving their soups) and my fave- Pomegranates are in season, so there's Vitamin C.
Posted by Phoiph (Member # 41238) on :
Beloved...
In my experience, diet is a crucial piece of the recovery protocol with mHBOT.
I had to have help...is there someone that could help make homemade meals (e.g., bone broths, etc.) for you?
Also...I'm sure you've been checked for C. diff?
Posted by Peimomma (Member # 45177) on :
Beloved
All that you mentioned for food has a ton of sodium. I have been buying fresh squash, broccoli, carrots, onions, Swiss chard to steam, sauté or roast in the oven with Italian seasoning. I make enough for two days at a time. A few apples and pears to switch between with raw pumpkin seeds and raw sun flower seeds.
Diet can cause brain fog, decreased energy and more. Our bodies are in repair mode so we need sleep and good nutrition. I took almonds out this week because I found they were causing nausea, slow thinking and a few other minor symptoms. I had no idea and had been eating them every day because they are a good snack, just not for me.
I hope the herx slows😃.
Posted by Beloved (Member # 37415) on :
Unfortunately for the past 5 months my diet has been more about survival that nutrients, etc. I've been in too much pain and physical weakness to cook. Since I'm on my own (dysfunctional family) I have no partner or caregiver to cook meals for me. Food has been going thru me at such a rate that sodium retention has been somewhat helpful. It's calmed down a great bit but it's still erratic. My tests were negative for C Diff.
On some level it's probably been good that I have tended to be an introvert; it's made me less reliant on others when honestly, there has been very little physical support. It's the isolating dynamic we with chronic illness fall into.
I'm too weak for the PT and exercise that I should be doing as well. I'm trying to rhythm out my capacity without crashing and burning.
Posted by Phoiph (Member # 41238) on :
Beloved...
I survived on only 6 or so foods for over 5 years when homebound...but they were very nutrient dense and kept me alive.
I was also not able to cook. I contacted the local Westin Price chapter and found someone that was already following their diet (e.g., grass fed bone broths, fermented vegetables, etc.) and was cooking for their own family. I paid them to cook extra and freeze it for me.
I know it is exhausting to think about, but this is a piece of your recovery protocol that has to be figured out somehow...
Because of your gut issues I think the GAPS Intro diet would be worth considering...
Posted by Beloved (Member # 37415) on :
It's not so mych a gut issue as it is a colon- mechanics issue. My bowel is paralyzed- i am an incomplete paraplegic. It means that the peristalsis mechanism is out of whack. 20 years of Elavil stalled it out; I knew how to work with that. Off the Elavil the peristalsis has been over-activated. I'm slowly introducing more regulating foods.
Today & TM are grocery & Farmer's Market's days. Lran proteins, some vegs & fruits. Usually for breakfast I've been doing egg whites, a banana or pear and occaisionally a yogurt. I need to find an alternative to coffee & tea ( mildly sensitive to caffeine [not coffee] and tea).
I'm going to try to cut back on my Internet/Email/texting time because it is so easy for me to lay in bed & do that when one hurts to move & too tired to do much. I already keep a rolling chair in the kitchen to sit while I prep & cook. I also put off all day getting into the hbot chamber. Setting a timer on my cell phone should help. Ive gotta try to get in my chamber by 9p.m.; there are 2 children in the apt over my head & I don't know if the sound of the compressor bothers them.
Posted by Peimomma (Member # 45177) on :
Beloved
have you tried warm lemon water to replace tea and coffee? I drink 70oz of water a day which is half my body weight.
And to help move things along have you added flaxseed or chia seeds to your breakfast meal?
It's a slow process of change in all we do but one day at a time and one change at a time😊.
Could you dive in the morning when the children might be at school?
Posted by Beloved (Member # 37415) on :
I've got flax seeds here. The Gastro' s P.A. suggested citrucel/benefiber daily but the effect has been involuntaries (uncontrollable diarrheal accidents, I.e. all over clothes, carpet etc) so I'm a lot more cautious right now. I'm already drinking about 48oz of water a day.
I can try hboting in the morning. I've been doing the hboting in the evening because it's been making me sleepy.
Yep, it really Is a slow process of change. I've taken off my Ritalin/ Wellbutrin duo the past few days to see where my bran fog + fatigue are at. So now I'm praying for the hbot to begin opening an energy window. I don't know Phoish how you did it for 60 days waiting for a change!
Posted by Phoiph (Member # 41238) on :
Beloved...
I call it a "slow miracle"...:)
It will be interesting over time to see how mHBOT affects your intestinal motility issue.
I had the opposite problem...food would sit in my stomach for days and not digest or move, as the nerves weren't functioning properly, and I had no stomach acid.
I remember the day when I started to feel a slight "hunger pang" contraction in my stomach and felt the stomach acid kick in again...I was in the chamber when it happened. It was actually quite painful at first (like the tin man getting oiled)...but also felt amazing...
I am hoping that (over time) nerve function will become more normalized in your situation as well...
Posted by Beloved (Member # 37415) on :
I REALLY hope it's not 20 years on that d***ed Elavil that has permanently skewered my colon. Ugh!
Posted by Phoiph (Member # 41238) on :
Remember that the body has an amazing capacity to heal itself...
I never thought conditions I had for so long could be reversed, but I was happy to be proven wrong...
Did your condition of "incomplete paraplegic" predate the Lyme in your situation?
If you could travel, it would be wonderful if you could come here and be evaluated by my neurologist/HBOT clinician friend...
Posted by Beloved (Member # 37415) on :
Yes. I have been a walking, incomplete paraplegic for 32 years. Both my rehab and my neurologists, neurosurgeons, most all my doctors are through the Shepherd Spinal Center in Atlanta. You're welcome to pass that on to your neuro/hbot friend. However, I'm in very good hands as per my spinal cord injury. My Lyme melange is 24 years now.
Posted by GMO Amigo (Member # 46949) on :
Hello Phoiph,
Thank you and also the other posters for this thread. So much great info here!
I have just PM'd you with a question on how to obtain a mHBOT unit. Please let me know what you think.
Thanks in advance!
GMO Amigo
Posted by Phoiph (Member # 41238) on :
Welcome GMO...
I just replied to your PM...
Posted by GMO Amigo (Member # 46949) on :
Thanks Phoiph!
Posted by Peimomma (Member # 45177) on :
Welcome GMO!!! Happy to see another new 😊
A small victory today at the doctors office...for the last 4-5 years I've had an elevated temperature of 100 and they always asked me if I knew why. This is not a Lyme doctor but I would try and explain as they glazed over. Well today my temp was 98👍. I even enjoy the small gains, shows my body is healing.
Posted by toyswalk (Member # 45981) on :
I'm setting up my Respiro tonight. We bought a used model and didn't get a manual. Any tips or warnings?
Posted by JCarlhelp (Member # 15957) on :
Recommend you PM Phoiph as very important to do it correct and have a protocol.
Posted by Phoiph (Member # 41238) on :
toyswalk...
I just emailed you with the set up video, diving instructions and precautions to take with your equipment, etc....
Posted by GMO Amigo (Member # 46949) on :
Phoiph - Did you receive my email? My email server sometimes acts up.
Peimomm, I have followed your story, and it is awesome. Another family member w/ Lyme watched your last vid and started bawling. Time to ramp up the HBO. Thanks for the welcome.
Posted by Monti (Member # 45718) on :
GMO Amigo....
I know this goes without saying but I just wanted to mention that peimommas progress from using mhbot has been unusually fast. And I just don't want anyone who starts this treatment to be disapointed that it takes them longer.
I truely feel this treatment will help you and your family member tremendously over time if you stick with it. But how much time is unknown. 6-12 months is what I tell myself.
That way I won't get discouraged and give up prematurely, missing out on its benefits.
I am about 4 months into it at this point and have very consistent 1 hour dives. I believe I am making some small gains but it isn't anything like Peimomma. Not yet anyways
I'm sure I am stating info you know all to well. So just be consistent and view it as a marathon not a sprint.
Posted by Peimomma (Member # 45177) on :
Thanks GMO, I hope I see more videos posted like mine in the future😊
Yes Monti my progress has been on a fast pace and I attribute it to a few things I do that are out of the norm as I haven't seen people post about them.
1. I do 1-3 coffee enemas a day to keep my liver and colon clear of toxins that can be absorbed back into my system.
2. I drink at least half my body weight in water every day to flush the other main exit for toxins.
3. My load is extremely light, no meds, no supplements for my body to breakdown and process.
4. I get 8-10 hours of sleep every day because that's when our body repairs. 9 pm and I'm in bed.
Here is a good article on detoxing the colon and the benefits.
Anyone using mHBOT with mobility problems? Mine are not so bad that I'm ready to trouble with a lift. I'll be able to get into the chamber. My problem will be getting off the ground. I'm dreaming of some kind of power pulley or hoist to get me up off the ground til someone can slip a bench under me. From there I can pivot and get to my walker.
I've tried rotating the chamber sideways on a raised platform. That was a no go.
Posted by Phoiph (Member # 41238) on :
Toyswalk...
I know you've tried rotating the chamber sideways on a raised platform...but have you tried it on a double bed (or larger) so you have room to maneuver in and out while on the bed?
Posted by toyswalk (Member # 45981) on :
We are going to hardware store over the week end to get supplies. We will figure this out!
Posted by LymeMEnaide (Member # 46997) on :
Hi Lymeneters, Im new to Lymenet. Im being treated for chronic Lyme and M.E. I am very interested in MHBOT and am looking for a used unit to buy. I have been reading and research but would really love any help and suggestions I can get from you more experienced users. I have direct messaged Phoiph on here and would love to get in touch with her. Any help will be greatly appreciated. Thank you in advance,
Posted by Phoiph (Member # 41238) on :
LymeMEnaide...I just replied to your PM...
Posted by Peimomma (Member # 45177) on :
Welcome LymenMEnaide!!
Glad to have you join this lovely group of peeps😁
I've decided I'm moving to a warmer place☀️☀️☀️
Rain, cold, and wind are the enemy. So for now I'm pretending and set my thermostat to 70💚
Posted by Trinity333 (Member # 46923) on :
Thanks you to Beloved and Peimomma for the ideas to keep the chamber cooler in summer. Beloved: are you actually doing the dives with the cold blocks inside?
Peimomma, we also set up fans around the chamber room, but they're just moving hot air around, haha! I started turning the A/C way down to cool off the room before I did the dive. That seemed to help some. I'm considering moving it to the other side of the house.
Are you having a setback? Sounds like maybe winter has brought some symptoms back? or no? I ask because this has been my own experience this year and the last few years...I get sick in Nov when the weather turns here. I know a lyme gal in town who winters in Palm Springs...not an option for me, lol.
As for my progress in the chamber, I did 3 dives and got a sore throat/congestion and couldn't pop my ears again, forcing me out of the chamber for 2 weeks. I've been back in for 2 days and the ears are popping so after a bit of delay I'm back on track!
To all those getting chambers (and it seems like a lot) welcome!
Posted by Phoiph (Member # 41238) on :
Trinity333...
I know you're just starting, but I want to mention that before I had Lyme, If I were to get a cold, etc., it would be when the weather changed in the Fall (and I live in a warm climate).
When I was very ill with Lyme...I never got a "normal" cold or flu.
When I began to heal via mHBOT, I worried about traversing that time of year...and sure enough...I got a couple of colds and flus from hell that first season (after doing mHBOT for about 6 months). My homeopathic MD was thrilled...as it showed signs of my immune system reacting in a more "normal" way.
I thought for sure I was "relapsing", as the symptoms were so intense (with residual Lyme pain, etc.), but after getting through it, I was far better than I had been a month before; in fact, I had taken a big step forward...
Something to keep in mind when you're miserable with your first cold or flu in years...
Posted by Peimomma (Member # 45177) on :
Trinity333 I'm far better off this winter then last when I wasn't treating with mHBOT😊. I got spoiled over summer in the warm months so I'm a bit grumbly😏
Once the cold damp weather sent in a little over a month ago I've noticed what seems like my blood thickening. I find that I have less energy because I'm constantly fighting to stay warm here with the dampness. I'm fine in the morning after my treatment but find by 1-2 in the afternoon the blood is thickening and I feel slow.
I don't have joint pain or muscle pain like last year, it's just that my O2 seems to be used up now that it's cold. I noticed that when I put the thermostat up to 70 things get flowing and I'm off being active. It's weird because it's not something I dealt with before, I was always just fatigued all day even after 12 hours of sleep. I guess I'll wait to see the electric bill😉
Glad to hear the ice packs helped in the chamber, we will try it when our weather warms up next May...ugh. I've felt a few times I had a scratch in my throat and started taking Cold Calm a homeopathic remedy combo. Glad you are feeling better.
Posted by Trinity333 (Member # 46923) on :
Phoiph, if only it was my first cold/flu in years In the 3 years before I was officially diagnosed, I was sick at least 2 times per year with cold/flu/pneumonia. I would get real sick, end up with pneumonia and need a course of antibiotics. I was having weird reactions to the abx, which I now realize was herxing. I've had "mono" twice and my blood tests continue to show active EBV and chlamydia pneumonia. My hopes with improved diet and the MHbot is a healthier gut and immune system!
I got the chamber last January and haven't been diligent. I would estimate my dives at 150 or so over the last 11 mos. My intention when I started up again a few weeks ago was to commit to 1 hr per day. After 3 days I got sick and couldn't clear my ears...which was a major letdown because I was revved up and ready to go, haha!
Peimomma, it still sounds like you are on the right track! I've some of your background from here and your videos, and if you're like me you measure your health in months or years. If your better than last winter, you're doing great!
Posted by Phoiph (Member # 41238) on :
Trinity333...
Sometimes it takes a little while to get on track...
I can tell that you understand the importance of frequency/consistency and diet, and are ready to re-commit as soon as your ears cooperate...good for you...
Posted by Trinity333 (Member # 46923) on :
Oh for goodness sake! I can't get off the starting line again with the chamber...a seal broke during today's session, the chamber is useless. I imagine it's warranteed, which will probably involve shipping it and waiting. Not to mention a disappointment for a chamber only used 150 times!
Grrrr!
Posted by Peimomma (Member # 45177) on :
Whoa!!! What brand chamber do you have? Definitely I would hope there is a warranty.
Okay, this is the last speed bump before you start new👍😊
Hope there is a quick turn around time for repair.
Posted by Trinity333 (Member # 46923) on :
It's the same one you have, the OxyHealth Respiro. It split at the window at your feet. A little scary to have it decompress so fast while in it!
Posted by Phoiph (Member # 41238) on :
Trinity333...
I just PM'd you...
Posted by Peimomma (Member # 45177) on :
I thought I'd give a little update on something I've been experiencing for the last 3 weeks. I started having memory flashes from the past, places, people, events just random. If I try and focus in and think about them it stops.
The other process I'm going back and forth with is the desire to get a job. I'm feeling good and a little bored at home and have been thinking about a part time job at my one year mark.
When I started mHBOT I committed to 2 years of treatment before going back to work. I know treatment has to be my priority for the next 14 months but it's kind of nice that my brain and body are having the desire to get back in the work force.
I settled on daily dives for now with a few extra dives a week to combat the cold and things are back on track. No herx and no fatigue. It's a fine balancing act...lol
Posted by Phoiph (Member # 41238) on :
Perimomma...
I remember the phase where I experienced the seemingly random flashbacks...this felt like neural "circuits" being reconnected.
There was also a time when I "revisited" emotional events of my past, going all the way back to childhood.
This seemed to be an emotional healing phase with layers coming to the surface, and once acknowledged, they passed rather easily.
We all know that true healing is more than just physical, so this is no surprise...but it is a testament to the body/mind healing powers of oxygen...
Posted by Peimomma (Member # 45177) on :
Thank you Phoiph for the confirmation 😊
The first week I just blew them off, the second week I really started to notice and be aware of them. And now I look forward to the next one, good or bad. It's been a long time since I have had memories.
BTW the red dot is still on my arm and it still itches every few days while in the chamber.
Posted by foxy loxy (Member # 47053) on :
Hello, all... I am new to this forum. But I am desperate for a little encouragement with mild hbot. I have been sick five years with neurological head pressure and other miserable head sensations.
I recently began mild hbot at my home and first half hour dive was miserable the next two days with increased symptoms. I quit because I am terrified of permanent damage. I CANNOT afford that! I seemed to get better than and tried it again for quite a while no problem. I upped it to one and a half hours.
AND CRASHED again. My Dr. wants me to work up to two hours. I can't find anyone who does hbot this long.
Should I keep quitting when I worsen and than restart? or BLAZE my way through no matter how I feel?
Posted by Peimomma (Member # 45177) on :
Welcome Foxy Loxy😊
I have found that 1 hour is sufficient for treating and healing the body over time. It is consistency and allowing your body time to heal after each treatment.
Many will say I've progressed quickly and I can't do 2 dives a day on a daily basis. I did in the beginning until the herx set in and then backed off to one a day. With the cold winter zapping my energy I've found that every 2-3 days I do two dives to offset the energy I lose from staying warm.
I'm certain other especially Phoiph will advise against more than one hour a day as that is how she treated and healed herself. As many will say on this board it's a slow consistent process.
Posted by foxy loxy (Member # 47053) on :
Thanks Peimomma, you don't know how excited I am I found you all!! I feel so alone and unsure in this new treatment.
A friend had tried it for four months and continually worsened on it and now I get fears I shall do myself more harm than good! WHAAA
I am definitely willing to give it a long try as long as I can handle it. I suffered through IV rocephin for a year and felt horrible, without much gain, and feel reluctant to insist it is always just "herxing."
my Dr. is the infamous lymeMD (DrJ)and told me he has never seen oxygen therapy not help, especially with abx. He wants me to shoot for two hours a day. I assume this is all at once not broken up, but should check.
So far hbot makes me dream wildly and makes me sleep. I am only a few weeks in tho.
Peimomma, I take it you started diving two hours separately a day? Cuz, I was doing it all at once! maybe that's the reason I am not doing well..
Posted by Phoiph (Member # 41238) on :
Foxyloxy...
It sounds to me like you have started mHBOT too rapidly...many people underestimate the power of mHBOT, especially when they are already compromised and are doing a lot of other therapies, including antibiotics.
Frequency and consistency is crucial. Based on my own experience (I have done over 1200 dives) and observing others over the last few years, I don't recommend doing more than 1 hour daily sessions (for chronic Lyme).
If you would like to PM me, I can help you work out a schedule to work up slowly...
Posted by foxy loxy (Member # 47053) on :
Thanks Phoiph, I have been aching to talk to you and have tried to PM you twice now... maybe I am not getting through? Lookin' forward to your advice!
Posted by Phoiph (Member # 41238) on :
foxy loxy...
I double-checked...I haven't received any PM's from you...and my box isn't full...
To PM, click on the envelope icon above this post...
Posted by mbdq (Member # 26277) on :
Hi every one, time for an update! As of yesterday I have reached 600 hours of mHBOT! My health continues to improve, albeit very slowly and with many ups and downs.
Taking some notes every day over the past two years of hbot has really helped to show my improvement. Otherwise, you get up every day and think "My head still hurts, darn that knee is sore again, etc." Overall, the intensity of my symptoms and number of symptoms have reduced. I am leading a very busy and full life.
Its interesting that the topic of emotions came up, as I have been in the THICK of working on emotional issues these past few months. I feel I was holding a lot of emotional trauma and energy in my body. I am working with some great practitioners (EFT, acupuncture, etc) and it has been extremely helpful.
I can tell you that the chamber can be a good, safe place to explore emotions, understand beliefs that are keeping you stuck, and have a good wailing cry!
Overall, mHBOT is my base treatment, along with the GAPS diet and now the energy/acupuncture work. I find the more I work on my gut and really nutrient dense eating, the more positive "bumps" I get. I am not on any herbs or abx specifically for Lyme, but I am using a little bit of Biocidin herbal tincture to try and help my gut out.
I feel I have severe dysbiosis after years of abuse and neglect from 4+ years of abx, birth control pills, stress, sugar, etc.
Its been a long road for me, but I am living and enjoying my life. Prior to finding hbot, I was desperate and had a lot of suicidal ideation because I couldn't see a way out of this mess. And believe me, I spent a lot of money and saw the "best" doc for two years.
I may not be cured, but I am healing. My body still has more work to do and I plan on supporting it any way I can.
We've got quite the group diving now, and I look forward to seeing everyone's progress. We are all going to improve and have many ups/downs at different rates. Try to listen to your body and support yourself.
Hugs to all you brave souls....
Posted by Monti (Member # 45718) on :
Mbdq...
Very encouraging post. Thank you!
Posted by purplehaze (Member # 40385) on :
hi mbdq and phoiph,
I just started on the hyperbaric oxygen
I had one dive last Thursday, one on Saturday and two yesterday there are two instructors at the facility, on Saturday my first day the lady instructor told me to have the mast on and on her instructions via intercom outside the chamber to then begin tightening the straps of the mask once she turned oxygen pressure on. all was fine throughout the whole session all the way up to maximum [24ft] no problem with blocked ears or any major discomfort
then on my session yesterday the other instructor was on duty and according to his instructions he told me not to tighten the mask straps until he had increased the pressure all the way to maximum so wile pressure was building up my ears felt very painful and pressurized. as of now 16 hours after coming out of chamber my right ear still hasent popped properly and I feel discomfort
my question is, should I have the oxygen mask on and tightened in place ONCE the pressure is coming through the hose and being increased?
thanks for any help
Posted by Phoiph (Member # 41238) on :
Hi purplehaze...
Would you mind sharing some more information? I have some questions for you to better understand your situation/protocol...
Are you being treated with HBOT for Lyme?
It sounds like you are being treated at a higher pressure than mild hyperbaric (i.e., 24 ft. vs. 11 ft.)...so are you diving at around 1.75ATA?
What kind of mask are you using?
Were you taught different methods to clear your ears?
It also sounds like you're treating more than 1x per day on some days? What is your diving schedule?
About your ear discomfort...
There are several variables that could have contributed.
The second instructor could have pressurized you more rapidly than the first, not giving your ears ample time to adjust.
And/or, you could have had some congestion in your Eustachian tubes on the painful day (which you may not have been aware of) which caused them not to clear properly. This can cause the sensitive tissues to stretch, and cause pain during and after the dive.
You should not experience ear pain in the chamber; pressure is OK, pain is not. If you are having pain, you should alert the operator immediately, and they should depressurize slightly to allow your ears to adjust, and slow the rate of descent.
Did the operator know you were having ear pain?
If you know you have ear congestion, (i.e., from a cold or allergies) which prevents you from clearing your ears, or have any ear pain, you should not dive at all until that has cleared up...
It doesn't sound like the type of mask you're using makes a super tight seal, so don't think having your mask loose during pressurization had anything to do with your ear pain...as it is more a function of the building pressure in the chamber, how fast you are pressurizing, and how well your ears can adjust and clear on that particular day...
(Having the mask loose while pressurizing allows more freedom for clearing the ears via yawning, Valsalva maneuver, opening and closing the mouth, etc.)
Posted by purplehaze (Member # 40385) on :
hi phoiph thanks for response
to answer your questions
well I was never officially diagnosed with lyme, but all the indications are that I do have it plus possibly/probably co-infections
the hyperbaric centre I am attending are treating all kinds of ailments and probably carry out the same process on patients irrespective of the disease/condition being addressed.
I did tell them that I most likely had chronic late stage Lyme [bitten in 1993] and they said I would need at least 20 sessions/dives
I travel three hour round trip to the facility so that is why I had 2 sessions yesterday and Ive scheduled 2 sessions again this coming Friday and one on Saturday
I wasent aware of any possible congestion on my right ear incidently now that you mentioned pressure, the first day with the lady operator that particular chamber went down to 24ft [had no issues] but the third day with the guy operator the chamber [different one] went down to 33ft
I did not tell him of the big discomfort with my right ear
yes, but operators explained the clearing of ears process similar to what you have stated here
I don't know the official name of the mask type I was using, maybe you can view his following link here, there is a guy wearing the mask in one of the photo there
sorry I cant be any more help
Posted by Peimomma (Member # 45177) on :
Welcome Purplehaze😊. It's great to have new people posting on the board.
Today I thought I would give an update on my husbands progress after 173 dives. He hasn't been tested for Lyme but with all the information about it as an STD he started treated in February as well, just not daily.
I would consider him in very good health at 50, no medication and no illnesses that we know of to date. However we have been monitoring his progress and have seen hair growth, better sleep and he started enjoying reading. He is someone that wouldn't read, in fact I can count on one hand the number of books he's read over the last 9 years. This month he is reading 3 books at one time on different subjects and enjoying them all.
He has also decided to learn a new hobby and signed up for a photography class. It's like the oxygen has awakened his brain.
As for me, this is the first year I'm excited for the holidays in many years. I'm ready to put up decorations, cook big meals and enjoy the company of family and friends.
Posted by Phoiph (Member # 41238) on :
Hi purplehaze...
This is very helpful. I also read about the facility and looked over your other posts on Lymenet to get some background.
Please note that I'm writing this as a non-medical professional, but am basing the information on research I have done, my own experience, many conversations with a neurologist in the HBOT field, and from observing and working with other people doing the treatment.
I'm not giving advice...just relaying what I have learned, and you will have to decide what to do.
There are 2 "camps" on how to treat chronic Lyme with HBOT. One camp is using high pressures (High pressure is greater than 1.5ATA...your 33 foot dive put you at 2ATA), mostly based on a study done years ago that noted that Borellia was killed by high pressures. The problem with the study, is that the lowest pressure threshold to kill Borellia wasn't measured/reported, and so the higher, more risky pressures have been traditionally used. Here's the study:
Effects of Hyperbaric Oxygen Therapy on Lyme Disease: hbotxofpalmbeach.com/study_pdfs/Lyme-Fife.pdf
Treatments under this premise are usually high pressure and done in short term blocks (i.e., 20 or 40 sessions). The problem, aside from greater risk involved, is that I haven't found many people who have had long term success with chronic Lyme from this method. It appears many people cannot tolerate the reaction, and it doesn't address the long term healing of the immune and other systems.
More recent study has shown that neurological conditions are better treated with lower pressures, and that higher pressures over time can actually worsen neurological conditions and be immune suppressive. Chronic Lyme Disease is a neurological condition.
Here's a paper written by Dr. Paul Harch who has been researching HBOT for over 20 years (I would also consider reading his book, "The Oxygen Revolution"):
As I have written many times, the way I became well is through consistent, 1 hour, daily, mild pressure treatments (via home chamber with supplemental oxygen) over a span of time.
Oxygen is a drug...and it produces free radicals which are beneficial against pathogens. When oxygen is done under pressure, the body produces its own extra antioxidants to "mop up" the free radicals after they have done their job.
A balance must be struck; if someone who is already in a compromised state of health via chronic illness does high pressure treatments (especially multiple times per day), they might not only experience significant reaction from the die off, but also oxidative stress, as their bodies may not be able to produce enough antioxidants to "mop up" the free radical load. (Taking artificial/supplemental antioxidants doesn't solve this issue.)
The high pressure, short term therapy which focuses on "killing the bugs", also doesn't take advantage of the most important long term HEALING effects of mild hyperbaric...(e.g., modulating/empowering the immune system, regenerating neural tissue, mobilization of stem cells over time, etc.)
The concerns I have in your case are the random, high pressures/depths being used, the multiple treatments per day, the short term nature of the therapy (although you wouldn't want to do long term, high pressure therapy due to risks), your ear current ear pain, and whether or not someone knowledgeable is following your case.
Another concern is whether you are taking anti-microbials or other therapies that may interact or the effects to be potentiated or reduced by the high pressure treatments.
I'm not trying to discourage you at all...on the contrary...just concerned about the method, as hyperbaric is a powerful treatment, and is often underestimated, particularly when treating chronic illnesses...
Please feel free to PM me also...
Posted by purplehaze (Member # 40385) on :
hi phoiph, many thanks for your great reply after reading through all your message and the link provided, I said to myself "here we go again" its so typical of this sphere of chronic infection and treatments/remedies that it would have to come down to major ambiguity as to how one should go about solving this puzzle.
I think the facility I'm attending are definitely going on the principle of "more is better" because there are two chambers there [one at 24ft and one at 33ft] and judging on the little info they have imparted to me I will be treated inside the 33ft one this leaves me in quite the predicament
I had planned on treatment tomorrow [double session] and one on Saturday but after explaining my ear discomfort issue to the main administrator/operator she said I should stop for now and get doctor prescription for antibiotics as it may be latent/lingering ear infection I'm dealing with
right now I'm not taking antimicrobials, but am doing the MMS protocol [started in July this year] plus Essiac tea, Magnesium oil and supplements [B6, zinc, copper]
will keep you posted....
Posted by Phoiph (Member # 41238) on :
purplehaze...
I know, I know...it is so discouraging and exhausting to have to fight through all the different information, opinions, methodologies, etc.
If you wanted to continue to dive at this facility, they likely could adjust the pressure/depth to no more than 16 ft., which would still be mild pressure (approximately 1.5 ATA). (It does sound like this is a community facility though, and I would guess coordination of other schedules would be necessary so members were diving at the same depth at the same time...)
The distance issue remains; how do you dive daily when the facility is a 3 hour round trip, not counting the time spent in the chamber?
This is not only a dilemma in Ireland (at least Ireland has such facilities!)...it is the same here, with the additional expense per dive in a clinical setting.
The other option would be to purchase or rent a home chamber...as many here have done...and/or share expenses with others in close proximity who need treatment and could use it cooperatively.
If you are interested in doing this, I can connect you with a liaison that handles chamber purchases or rentals overseas...you can PM me for more info.
I hope you don't give up on this therapy. Where there's a will, there's a way...
As for your ear, I agree that you shouldn't dive again until it is better. It may not be an infection, however,...they could've just pressurized you too quickly, which stretches the delicate membranes and can cause soreness...so be sure to discuss this possibility with the doctor...
Posted by Haley (Member # 22008) on :
Purplehaze . I had the same experience when I first dove. I had so much pain in my right ear that I thought I had busted my eardrum. I have had a low grade infection on the right side of my throat/ear for a long time. So based on my experience , it will exasperate an infection if there is one. I agree that lower pressure would be better until the pain is under control.
I continued to dive and the pain is mostly gone now. I'm still not well , but continue to dive.
Best of luck in your mhbot journey.
Posted by purplehaze (Member # 40385) on :
Haley, thank you for wishes
well that is interesting you had very similar situation, I will take antibiotics [if doc prescribes them] and see if that helps to handle this issue. then hopefully I can resume the hbot asap
Posted by purplehaze (Member # 40385) on :
peimomma,
wow, 173 - that is some serious diving
glad you and hubby are doing well, and its really encouraging to hear results like these are achieved by people doing the hbot
Posted by purplehaze (Member # 40385) on :
hi phoiph
my pm to you was rejected, your inbox is full
Posted by Phoiph (Member # 41238) on :
Apologies, purplehaze!
Should be OK now...
Posted by soccermama (Member # 35101) on :
I'm super stoked. I have been watching this thread for some time and like all of you have tried so many different things to restore my health.
While I believed that Mhbot was beneficial, I just couldn't seem to justify the cost after having wasted my money on so many things. Finally, my husband said, "we just need to do it."
I contacted Phoiph but I had a problem. I had not seen my LLMD since February. I had scheduled an appointment with a functional medicine doctor but couldn't get an appointment until February.
Anyway, my husband called my old LLMD for me and asked for the prescription and I got it in the mail yesterday. I can now move forward.
Now we just have to go through the process of purchasing one. Since we will have to finance, we may wait until January for tax purposes but it is going to happen.
Yeah!
Posted by Monti (Member # 45718) on :
Wonderful!! I hope this makes all the difference for you!!
Posted by foxy loxy (Member # 47053) on :
Man, I feel like I am back on IV rocephin on mild hyperbaric if I do to much. Brings on neuro head jazz... yuckers!! Phoiph helped me cut way back and so far I seem to be going back to my normal cruddy head. Dive away friends! anxious to see how you all continue to do as well! Go soccermama!
Posted by jarjar (Member # 8847) on :
Just a quick update on my experience with mhbot. I have been diving daily for about 1 1/2 years 1 hour daily. My feelings are the same about this therapy.
I have NO regrets buying a used Oxyhealth chamber as I function better with the daily diving and can tell a difference when I skip a day. I find diving not a silver bullet for me but a tool along with my gb4000 with MOPA (rife machine) to be able to function better.
Also diet plays a major roll with me. No gluten, low fat and sugar free (use a little stevia for substitute when needed).
I remember phoip saying she was really careful with her diet and was big on bone broth during her healing best of my memory.
Posted by foxy loxy (Member # 47053) on :
jar, jar, I am too lazy to see if you posted earlier...how much help have you find hbot to be and how bad were you? Thanks for posting!
Posted by toyswalk (Member # 45981) on :
Just completed my first home dive!
I have major mobility issues so getting me out was a real challenge. But, as I've told friends, we managed to do it without calling the fire department or filing for a divorce! Hopefully we learned a few things and it will be easier tomorrow.
Posted by soccermama (Member # 35101) on :
Phoiph,
Wanted to ask this question on the public forum so all can benefit. When I spoke with you about which chamber to get you spoke about the difference between the vitaeris and respiro.
I know the size is the biggest difference but you also mentioned something about the compressor, I think.
Also, do we have to get a bigger concentrator or will the Airsep 10L work?
We qualified for a loan so it looks like we might be able to purchase a unit outright depending on the cost.
Thanks for the help!
Also, do we have to get a bigger
Posted by Phoiph (Member # 41238) on :
Hi Soccermama...
Just to clarify...
The compressor is what is used to pressurize the chamber with room air.
The oxygen concentrator takes room air and removes nitrogen, concentrating the oxygen. This is the oxygen source that is breathed through the mask, and has little to do with pressurizing the chamber.
The Vitaeris (larger chamber) comes with a larger compressor, so it can fill faster (sometimes with older chambers, 2 smaller compressors are hooked together). The Respiro (medium chamber) comes with a smaller compressor.
Both chambers (plus the Solace, the smallest chamber) reach the same pressure (4.2 PSI, or 1.3 ATA); the main difference between them is the size.
The oxygen concentrator that is used with any of the chambers must supply sufficient PSI (pounds per square inch) to counteract the backpressure from the chamber. The Airsep you mention has 20PSI, which is plenty, as it well exceeds the 4.2 PSI of the chambers.
The LPM (liters per minute) refers to the how many liters per minute of oxygen the concentrator can supply. In this case 10...but with the AirSep, it is important to set it at 8.5 when using it with a chamber (no higher). This is because the backpressure from the chamber will make any concentrator work harder, and this model will go into a protective "on demand" mode (instead of continuous flow) if set higher (to preserve oxygen purity). Setting it at 8.5 will avoid this, and still provide plenty of 02.
Hope this wasn't "too much information"...
To summarize...your Airsep 20PSI 10LPM concentrator will work great for any size home chamber, and is the best choice in my opinion...
Posted by Marnie (Member # 773) on :
I need some expert opinions - am I on the right track?
If you plow your way thru this, I guarantee you will be amazed by some of the information.
I think Bb is very similar to the following pathogen (which is PHOTOSYNTHETIC):
The phototrophic bacterium Rhodobacter capsulatus contains a single,
oxygen-responsive superoxide dismutase (SODRc) homologous to iron-containing superoxide dismutase enzymes.
Recombinant SODRc, however, displayed higher activity after refolding with Mn2+, especially when the pH of the assay mixture was raised.
SODRc isolated from Rhodobacter cells also
***preferentially contains manganese,***
but metal discrimination depends on the culture conditions, with ***iron fractions increasing from 7% in aerobic cultures*** up to 40% in photosynthetic cultures.
Therefore, SODRc behaves as a Mn-containing dismutase with cambialistic properties.
Rhodobacter capsulatus is a gram-negative phototrophic bacterium that can thrive under a broad range of environmental conditions.
When the *oxygen tension is low*, these microorganisms *synthesize ATP through a light-driven, anoxygenic electron transport* around a single photosystem
whereas in the presence of air
they shift to a
respiratory metabolism
after ***expression of oxidases and dehydrogenases.***
NADH ***oxidases*** from Borrelia burgdorferi and glyceraldehyde-3-phosphate ***dehydrogenase*** (GAPDH) in Borrelia burgdorferi…
”Oxygen is key to the phagocytosis and killing of bacteria by neutrophils or polymorphonuclear cells (PMNs).
This process involves the production of oxygen radicals and superoxides and is directly influenced by the oxygen concentration in the tissue.
As the oxygen tension falls below 30 mmHg the efficiency of bacteriocidal action of PMNs begins to drop off dramatically.
This was demonstrated by Knighton et al in 1984 where the phagocytic activity of neutrophils in ingesting Staph. aureus was compared to oxygen tension.
One of the reasons why I believe Bb is "photosynthetic" has to do with the potential of the Western Fence Lizard to completely destroy Bb.
And like the other pathogen mentioned earlier, Bb appears to be influenced by oxygen tension levels
- preferring low oxygen tension
to make ATP through a light-driven, *anoxygenic* electron transport.
For newbies...that lizard has a pineal gland on top of its head. It also has a BLUE (cyan) belly. It hunts for food at night (insects)and has to be able to see in darkness i.e., HAS to have a lot of eye rods. Thus it can capture ANY available light (moon light, star light)in order to see its prey.
While hunting, the WFL is covered with Bb infected ticks, but when they fall off, they no longer contain any Bb.
It is believed the WFL has an enzyme (destroyed if the blood is heated) that is protective and is capable of destroying Bb. When the WFL's blood was heated and Bb was re-introduced, Bb survived. So heat, destroyed a beneficial protein.
But...
Light inactivates this enzyme:
AANAT is rapidly *inactivated* when animals are exposed to light at night.
The data indicate a role of the immune system and particularly of endogenously formed cytokines, like
interferon-gamma and tumour necrosis factor-alpha, effecting tryptophan
and neopterin metabolism in patients with acute Lyme neuroborreliosis.
PMID: 7865624
AND...HBOT therapy - serotonin:
whereas in the subgroup treated with HBO2 the clinical effectiveness and the appearance of plateau in the binding curves indicated that the oxygen therapy could act through serotonergic pathways.
PMID: 9171470
While Bb is very tryptophan dependent...
does forcing the tryptophan -> serotonin "direction" (but inhibiting melatonin production)
rather than
using IDO (enzyme) which helps tryptophan -> KYN (elevated in MS, HIV, etc.) and ultimately to niacin...
"do in" Bb?
Does light inactivate IDO? (Remember, we BLINK)
Keep in mind....as the sun rises...melatonin gets converted BACK to serotonin and of course we also need to make niacin via tryptophan w/ IDO route.
The reverse process begins to happen as the sun sets (serotonin -> melatonin).
How important is it to INACTIVATE IDO?
Cancer...
Taken together, our findings support the suitability of d-1-methyl-tryptophan for human trials aiming to assess
the utility of IDO inhibition to block host-mediated immunosuppression and enhance antitumor immunity
in the setting of combined chemo-immunotherapy regimens.
Sidenote: my sis (now autoimmune from lyme) looks to have prevented "neuro" lyme via taking the highest level of Prozac allowed.
This is very complex because Bb needs norepinephrine and epinephrine and locks onto them. Prozac increases norepinephrine, but it also
increases serotonin.
So while it does appear HBO therapy (esp. in conjunction with abx.) can clear Bb, I think the use of light frequencies (Hz) - very specifically 432Hz (perfect A, the frequency of light) with a binaural beat of 8Hz - can also be very useful.
8Hz is very unique...it is the frequency between theta and alpha brain waves, supposedly the bridge between consciousness and subconsciousness.
It is also the frequency of ...get this...hydrogen. 432 Hz resonates with a frequency of 8 Hz (which corresponds to the note "C")
8 Hz is the resonant frequency of 432 Hz (the frequency of light) and is the resonant frequency of hydrogen AND
is the frequency of the double helix in DNA needed for replication!
I believe a cure IS possible and I believe sharing knowledge and experiences will eventually -> a cure for all.
God Bless.
Posted by susank (Member # 22150) on :
I'm interested and have questions. Thanks to all that post here with your experiences and your words/offers of help.
I looked into mHBOT about a year ago - tried to find a place near me to try a few dives.
I remember reading something about a side effect of cataracts? That scared me off a bit.
Thoughts/questions about a home unit:
I am extremely chemical sensitive - do the units smell? The portable units are a kind of fabric?
The system is the chamber, oxygen of some kind and a compressor? My ears are so sound sensitive - wondering if I could tolerate the noise?
I have head pressure and recently eye pressure (an eye herx from Rocephin?). Also allergies and/or respiratory infections* and am usually congested. My right ear seems to always feel congested. A no-go for mHBOT?
*I have the immune deficiency CVID - which means respiratory issues. I just started seeing an allergist/new immuno about allergies and IVIG/SCIG. (I do SubQ Gamma).
It's a problem having CVID and Lyme - I always feel bad - but cannot tell if I am having alleriges, a cold/flu or a bacterial respiratory infection.
A poster on this thread brought up the subject of Lymie's not getting colds. I had forgotten about that.
Also some folks that have an ID don't show the outward symptoms - like lots of sneezing and coughing.
I am gearing up to see the allergist/immuno for a follow-up next week. I told him I have Lyme and he did not poo-poo that at all.
When I saw him my eyes were in bad shape - blepharitis. He made a comment that with my ID my immune system might not make the "pus" commonly seen in people with healthy immune systems that excrete copious amount of yellowish pus when they have blepharitis/conjuncitivis.
I thought that was interesting. He also mentioned the inflammation in the eye was from the toxins the bacteria secretes.
I went to see him thinking allergies - because of clear thick discharge from my eyes.
Point: Atypical symptoms presenting when one has Lyme and/or CVID.
I have not had a cold in years - since Lyme Dx. Or maybe I have had one - just feel awful - but no sneezing. Because my immune system is not mounting a response?
So.......mHBOT is helping folks with their immune system and Lyme?
Curious if doing mHBOT for Lyme would help with other infections?
Sorry have written so much - when I get tired - I get wordy..........
I am seriously thinking about trying then buying a unit for myself. If it is not too loud and chemical smelling. And if I can figure out why I have nasal and ear congestion. As no mHBOT with ear congestion, right?
Posted by Marnie (Member # 773) on :
Undermethylated-high histamine.
Genetically and/or pathogen triggered.
Due to your respiratory issues, HBOT may be too risky for you.
That's not to say you can't go a different route...Rife.
A very healthy diet and exercise (AS TOLERATED!) is important too.
Listening (with headphones) to the CD I linked (not expensive) may help too.
If serotonin IS the key (and I believe it is - read my post yesterday - 12/8)...we may have a problem systemically.
Excess serotonin in the gut = N/V. Zofran blocks it.
If Bb is in the gut...we desperately need Tritec (Rantinidine Bismuth Citrate) which rids all forms of Bb in the gut...all forms.
Rantinidine is Zantac. Bismuth citrate is NOT Pepto Bismol.
I believe Tritec is still available in Europe and could certainly be compounded in the U.S. with a prescription from a doctor.
Oddly...a lot of serotonin is made in the area of the bowel where our appendix is.
The above will give you insight re: serotonin-inflammation.
I've said over and over...we have to tame down inflammation AND hit Bb.
Posted by Phoiph (Member # 41238) on :
susanK...
To answer some of your questions...
--Maturing of pre-existing cataracts and myopia (usually reversible) is more of a risk with higher pressures and 100% medical grade oxygen as often used in clinical settings, but have not been associated with the lower pressures used with home chambers.
--New chambers, masks, and tubing do smell and can be effectively off-gassed for sensitive people. Used chambers are available, as are ceramic and stainless steel masks.
--The compressor and oxygen concentrator do make noise, but there is a sound dampener inside the chamber, and it is more of a "white noise" inside. Once up to pressure, you can wear noise-cancelling headphones if necessary.
--Yes, one of the many benefits of mHBOT is to increase and modulate the immune response, as well as release stem cells. By normalizing the body's immune response, it has a broad effect. It also has a direct effect on pathogens, inflammation, hypoperfusion, etc.
--You must be able to clear your ears to equalize the pressure when "diving". If you have congestion that prevents this, you must either wait until it clears, or if it is chronic, there are other methods people have used successfully. It becomes less of an issue for most people as they do more mHBOT.
--You will need a prescription/clearance from your doctor to buy a chamber. I would also suggest doing a few sessions first to learn how to clear your ears and see how your ears adjust.
If you PM me, I will give you information on possible locations near you where you can do a few sessions, and also information on options and discounts for renting or buying a home chamber, etc.
I also have lots of resources for you to read, if you like. A good starting point is "The Oxygen Revolution", by Dr. Paul Harch. Also, here is a link to a short, animated video that describes how hyperbaric oxygen therapy works in general:
I know when my wife was doing HBOT and felt at all stuffy she would take Claritan about 30 minutes before dive.
Posted by foxy loxy (Member # 47053) on :
Did anyone notice Excessive dreaming on mHBOT? or am I crazy??? I mean every night since...
Posted by Phoiph (Member # 41238) on :
The way I understand it, more REM (dream-state) sleep is a sign that your brain has access to more oxygen...and cerebral blood flow...
REM sleep burns more fuel (oxygen/glucose), and there has to be enough fuel "on board" to attain this state:
"...REM sleep time is strongly reduced by hypoxic and increased by hyperoxic atmosphere, in accordance with the existence of an O2 diffusion limitation. Any pathological decrease in arterial PO2 and/or O2 delivery creates a specific risk in REM sleep..."
I remember lots of bizarre brain "trips" (both awake and during sleep) as my brain was awakening and knitting back together. I would have phases of enhanced creativity and imagination, as well as memories I hadn't recalled in decades. Then, this state would "normalize", and another phase would begin.
In retrospect, it makes sense that the circuits were being reconnected...
Posted by purplehaze (Member # 40385) on :
well I've never had a problem with dreaming over the last several years, I mean I tend to dream a lot, its actually quite exhilarating and many times I go to bed thinking - "hmm I wonder what am I gonna dream about tonight" as though looking forward to it.. since starting the HBOT I haven't noticed dreaming any more than usual
Posted by Marnie (Member # 773) on :
There is a great deal of evidence that acetylcholine is associated with REM sleep.
For example,
release of ACh in the cortex is highest during waking and REM sleep,
and
lowest during delta sleep.
Further, drugs that act as ACh agonists increase REM, and
Plasma AOPP (advanced oxidation protein products ) levels were lowered significantly
after fifteen consecutive HBOT sessions (between-day variations).
***Decreased AOPP levels*** suggest that increased oxygenation of tissues due to HBO therapy may activate some endogenous factors that prevent hazardous effects of the disease itself.
Advanced oxidation protein products (AOPP) are defined as
***dityrosine containing cross-linked protein products***
and are reflect oxidized protein damage.
AOPP has been used extensively as biomarkers of inflammation and oxidative stress.
Several studies have been shown that AOPP levels are increased in many pathological conditions such as diabetes mellitus, chronic kidney disease, coronary artery disease, Behçet's disease.
Results also revealed the prevalence of dityrosine crosslinks in amyloid plaques in brain tissue and in cerebrospinal fluid from AD patients.
Aβ dimers may be stabilized by dityrosine crosslinking.
These results indicate that dityrosine cross-links may play an important role in the pathogenesis of Alzheimer’s disease and
can be generated by reactive oxygen species
***catalyzed by Cu2+ ions.***
The observation of increased Aβ and dityrosine in CSF from AD patients suggests that this could be used as a potential biomarker of oxidative stress in AD.
Generally speaking Bb's OspA triggers IFN-A not IFN y (interferon alpha, not interferon gamma).
"If an invader triggers a TH1 immune response then these molecules are predominantly triggered:
• Interluken-2 (IL-2), Interluken 12 (Il-12) , gamma interferon (IFN-gamma) and IgA (Immunoglobulin type A), amongst others;
For a predominantly TH2 immune response, these molecules are activated for defence:
• Interlukens (IL)4, 5, 6, 10, alpha interferon (IFN-alpha), IgE (Immunoglobulin type E) and IgG.
See where our first response to Bb was Th2 via IFNa and not IFNy = Th1?
Ascorbic acid lowers Cu. Timed release vitamin C (in gelatin capsules) may help. NOT Na + vitamin C. If zinc is low and copper is high, to restore a balance we need to raise zinc and lower copper.
Remember how that is the "formula" Zn+ vit C to help prevent colds (viruses)?
A Novel ***Copper Chelate*** Modulates Tumor Associated Macrophages to Promote Anti-Tumor Response of T Cells
The use of the product mentioned above ->
"not only allowed strong Th1 response marked by generation of ***high levels of IFN-γ*** but also reduced activation induced T cell death."
"Our results show the potential usefulness of CuNG in immunotherapy of drug-resistant cancers through reprogramming of TAMs that in turn
reprogram the T cells and reeducate the T helper function to
The substrates for IDO (the enzyme that makes tryptophan -> KYN (too much KYN)
include serotonin AND melatonin et al.
Eliminate one substrate...melatonin via "light" and up goes tryptophan -> protective serotonin.
" Direct evidence has also been provided that serotonin is capable of releasing acetylcholine from the Auerbach plexus.
It is very likely that serotonin stimulates ganglion cells, which in fact leads to firing and, consequently, to an increase of acetylcholine release from the nerve terminals."
There are a LOT more benefits to HBOT which I will post later with links.
Posted by Monti (Member # 45718) on :
Purple haze...
Your dreaming experience is the exact same as mine. I also often wonder where my dreams will take me.
I would say that ever since in contracted Lyme my dreaming has intensified. But no noticeable change since using mhbot.
Posted by foxy loxy (Member # 47053) on :
Thanks for the input...y'all. I found all posts fascinating! Phoiph, that is so interesting that you had weird head "phases" because I do feel like something is happening upstairs, just not sure if it is for the better yet or not!
I wonder if I dream more because I normally dive before bedtime? When do the rest of you dive?
Posted by Monti (Member # 45718) on :
I dive around 4:30pm each day
Posted by Phoiph (Member # 41238) on :
foxy loxy...
I realize you are just beginning mHBOT...but am wondering if the quality of your sleep has changed (for better or worse)?
Posted by Jolley (Member # 46454) on :
I've been watching this thread for awhile and will be starting mhbot in January; thank you for sharing your journeys. I just bought my oxygen concentrator and have been using it daily. Excited to begin.
Posted by foxy loxy (Member # 47053) on :
Phoiph, I would say I am not sleeping with such a "dead" sort of sleep, I used to have... but I am not having trouble sleeping.
Since becoming sick I go to sleep... BOOM!! Fast! now with mHBOT I dream... one thing after the next in almost A.D.D fashion!
I would say mHBOT makes me sleepy/tired. That is why I do it before bedtime.
Welcome Jolley! We do have quite the diving group! I hope mHBOT helps you! Posted by Marnie (Member # 773) on :
I hope this has not already been posted:
"Lyme disease is the most commonly reported vector-borne illness in the United States, but it is relatively rare in Taiwan.
Lyme disease can be treated with antibiotic agents, but approximately 20% of these patients experience persistent or intermittent subjective symptoms, so-called chronic Lyme disease (CLD).
The mechanisms of CLD remain unclear and the symptoms related to CLD are difficult to manage.
Hyperbaric oxygen therapy (HBOT) was applied in CLD therapy in the 1990s. However, reported information regarding the effectiveness of HBOT for CLD is still limited.
Here, we present a patient with CLD who was successfully treated with HBOT."
I can't post link because of ( ) in the link. See if you can find it using words in the quote above.
Does HBOT "compete" with Bb's nitrite reductase -> toxic NO (to Bb) versus Bb using nitrite reductase -> nitrate (Doxy inhibits!)-> ammonia?
Deoxyhemoglobin triggers
nitrite reduction to nitric oxide normally, but Bb "steals" and uses nitrite.
Cytochrome c nitrite reductase is a bacterial enzyme that catalyzes the six electron reduction of nitrite to ammonia; an important step in the biological nitrogen cycle.
The enzyme catalyses the second step in the two step conversion of nitrate to ammonia, which
allows certain bacteria to use nitrite as a terminal electron acceptor, rather than oxygen, during anaerobic conditions.
Wikipedia
Bb - NapA
Transcripts of genes that encode proteins containing iron-sulfur clusters or iron, including NapA (nitrite reductase)
Collectively, these data strongly support a central role of ***NapA in promoting both Treg response and immune suppression in the CSF of patients with chronic Lyme borreliosis***
and suggest that NapA and the Treg pathway may represent novel therapeutic targets for the prevention and treatment of the disease.
Treg depletion diminished the superior effects of M(2c) compared to M(2a) in protection against renal injury, inflammatory infiltrates, and renal fibrosis. Thus, M(2c) are more potent than M(2a) macrophages in protecting against renal injury due to their ability to induce Tregs.
Further, apparently *reduced populations of M2a and M2c* subtype macrophages may contribute to the lack of anti-inflammatory activity apparent in the disease.
M2b subtype macrophages may actually have a role in causing disease directly.
To "see" where HBOT is working...what it promotes and what it inhibits.
Posted by Koco800 (Member # 47160) on :
Hey all,
I am starting mild hyperbaric therapy. I got Lyme, Bartonella, Babesia, and who knows what else in 2004. I've seen a few LLMDs, but have never gotten totally well. I've tried a lot of antibiotics and other therapies. I got a prescription from my LLMD for a portable home chamber and oxygen concentrator. I'm about a week in, every other day for about 45-50 minutes (trying to take it slow). I may build up to an hour every day. Not much to report so far, but I plan to continue. I'm also still on antibiotics and malarone. I finally learned how to zip the chamber myself, which will make self-treatment easier (it's still pretty hard to zip all the zippers though).
Posted by Phoiph (Member # 41238) on :
Welcome, Koco800...
What kind of chamber and oxygen concentrator did you purchase?
Posted by Peimomma (Member # 45177) on :
Welcome to all the Newbies😊
So encouraging to see new posts, experiences and gains.
367 dives to date and today I submitted a resume for a part time job👍. I'm in no hurry and causally looking, mostly word of mouth for now.
Posted by Haley (Member # 22008) on :
Welcome koko800. I remember being completly exhausted after zipping myself in. These days when I get down about my health , I get in my chamber and I realize how exhausting it was just to get in. I then stop take a breath and realize I AM making progress. I have not been exhausted from getting in the chamber for a long time. Sometimes the changes are very subtle!
Posted by Haley (Member # 22008) on :
I would like to buy a regulator for my oxygen tank and try to put that through my chamber. Any ideas? What type of regulator do I get. I think the pure oxygen would increase the efficacy.
Posted by Koco800 (Member # 47160) on :
Thanks for the replies! I am using the Newtowne 24'' chamber and an Airsep Intensity concentrator...
Posted by Phoiph (Member # 41238) on :
Hi Haley...
I'm sure this is possible using an 02 tank, but my concern would be that it may raise the ambient oxygen level inside the chamber enough for there to be greater risk of fire.
In commercial chambers where 100% medical grade oxygen is breathed through a mask (even when the chamber is pressurized with room air), there are restrictions...(e.g., no synthetic clothing, electronics, newspaper, perfumes/hairspray, jewelry, etc.)
I will ask Oxyhealth about it...
Posted by Phoiph (Member # 41238) on :
Koco800...
An important FYI...
You may already be aware of this, but if you have the AirSep "New Life Intensity" 10 LPM, 20 PSI, you should set it at no more than 8.5 LPM when used with the chamber.
(For explanation, refer to the 2nd post on this page...)
Also...very important to always have your concentrator ON whenever there is pressure in the chamber...otherwise, the backpressure from the chamber will damage it.
Posted by S13 (Member # 42830) on :
I just set it at 10 LPM and it works fine.
I dont know if american Airseps are different, but my Intensity does not have an on demand feature, so it works continuously up to 10 LPM without problems.
Posted by Phoiph (Member # 41238) on :
Hi S13...
It may seem to be working fine (and may very well be), but setting the AirSep at 10 while using it with a chamber will shorten the life of the unit.
It is a great unit (the best, in my opinion), but these concentrators were not made to be used with chambers...so running it at 10 combined with the backpressure of the chamber is overworking it.
You may not even know it is going into a pulse/on demand mode to conserve oxygen purity. The technicians might not even tell you that, but the engineers will.
It is unlikely anyone who is resting/laying down in the chamber would breathe 10LPM anyway...so 8 to 8.5 is a better setting that won't sacrifice 02 purity, and will extend the life of your concentrator.
By the way, does your AirSep have a small yellow light (02 monitor/alarm feature) which lights up when you turn it on?
Posted by S13 (Member # 42830) on :
Yes it has the small yellow light.
Posted by Phoiph (Member # 41238) on :
OK...good...it has the 02 monitor/alarm feature...which will sound if the electricity goes out or the 02 purity falls below 80%.
Some AirSep units don't have this feature (they are less expensive) but I don't recommend them for obvious reasons.
Also, even though the purity alarm on your AirSep hasn't sounded (while the unit is set at 10LPM when being used with a chamber), it doesn't guarantee that the unit is not overworking to maintain that purity level (and/or is forced into a demand/pulse mode)...and again, over time, this will shorten the life of the unit.
Other models/manufacturers work differently. The SeQual 10LPM, for example, should be set at 10LPM when used with a chamber. Once the chamber is inflated, the LPM reading will drop to 8...and should be left at that setting throughout the dive. It will rise back to 10 once the chamber is deflated. If someone resets the dial to 10 while the chamber is inflated, however, this will overwork the unit.
Posted by Koco800 (Member # 47160) on :
Phoiph, Thanks for the advice. I do have that concentrator. So far I have been setting it at 7. I will most likely move it to 8 tomorrow, but will make sure to stay below 8.5
Posted by Koco800 (Member # 47160) on :
Hey,
I may not remember to update this all the way through treatment, but so far I'm 11 dives in.
I haven't noticed anything huge, except maybe some weird intestinal changes. I had diarrhea the first two days after starting hyperbaric...not sure what would have caused that. No huge symptom relief yet (it's early)...my main lingering issues are neuropathy, anxiety, intermittent insomnia, fatigue....and a lot of other stuff that never resolved with antibiotic treatment
Posted by Monti (Member # 45718) on :
Hi Koko800...
When I first started the treatment made me very gassy for the first few days and then that went away. It's not the exact same issue as you but in the family.
Posted by Phoiph (Member # 41238) on :
Koco800...
You may have had a chance to read the entire thread yet, but for most of us, the lasting changes happen over an extended period of time.
In my case, it was a few months of daily dives before I noticed the first "shift" (not necessarily an improvement, but a change). It was a 2 step forward, 1 step back process, that eventually led to recovery. Diet and gradual exercise was also crucial.
It helps to keep a log with short daily entries, so you can look back over time and see the changes. It is easy to forget where you came from when you're feeling better, and the changes are gradual.
I also recommend doing periodic videos every three months or so...
Posted by foxy loxy (Member # 47053) on :
I am JOYFUL to report that I am currently in an "up" phase!! I feel like it won't last, BUT! I will say I have NEVER had such an UP as THIS UP!!! I am SOOO excited but trying not to be because I think I will probably crash again!! but I have times when my head just feels GOOD! not better but GOOD!!
I am two months in. It made me sicker at first so I backed way down and started much more gradually. I still am only at an hour and lay the mask under my chin. I am hoping to gradually start breathing in the oxygen a little at a time.
I am feeling so good the last few days I hate to break the waters!!! OH what bliss to have a normal head!! even only for short times!!!
OH, I hope this is working... praying...praying...
Posted by Phoiph (Member # 41238) on :
foxy loxy...
Has it really been 2 months already? I'm very glad the gradual approach is working :)
Pleeeeeze continue to go slowly...and try to resist the temptation to over do it (I know how difficult that is when you have a "window").
There will definitely be ups and downs...that is a given...but now you know that you are capable of feeling better, which is a big help, both mentally and physically.
Are you logging?
Posted by susank (Member # 22150) on :
Phoiph - your PM box is full.
Posted by Phoiph (Member # 41238) on :
Apologies, SusanK...should be OK now.
Posted by toyswalk (Member # 45981) on :
18 'dives' and LOVING IT!!! I'm working into it slowly, I'm just at 47 minutes without supplemental oxygen. I started noticing subtle signs of improvement after just the first few dives. Very, very excited and encouraged!
If you do Facebook please join the closed (private) mHBOT group I've started. Newbies, pros and might wannabes all welcome. Just type mHBOT in the Facebook search and it should pop right up. No desire to replace this superior and informative resource here! Just thought it'd be fun to have a casual place to post while we are doing our dives. Today I posted a pic of the clip on hanger my husband made for my Wilkie talkie. A couple of us have posted pics of our views from inside our chambers :-). mHBOT mild hyperbaric oxygen therapy is full name of the page, join us!
Posted by foxy loxy (Member # 47053) on :
Yes Phoiph, 51 dives in. Of course some of those were terribly short and I am currently not using the mask yet!
I can hardly believe how powerful this is even without the mask!!
My Dr. gave me a different mask with a bag that gives more concentrated oxygen. I think I will get used to mine first before trying it.
Don't worry Phoiph, I think I have learned my lesson about too fast! Now I don't want to change anything! Thanks for the encouragement!! Means a lot...
I am so EXCITED!!! Toyswalk,I don't have facebook, so be sure to continue to log on here! I want to know how you do!
P.S. Oh and YES I am logging...
Posted by toyswalk (Member # 45981) on :
Foxy, I AM SO EXCITED FOR YOU!
Look forward to sharing more improvement updates with you. I check in here a couple times of day to see what's up.
May the force be with you!
Posted by Phoiph (Member # 41238) on :
foxyloxy...
Is that a "non-rebrether" mask? If so, it requires flow rates of 10-15 liters per minute to keep the bag inflated, which is more than the output of the oxygen concentrator you are using...
If you use it with lower LPM (8.5 LPM is the highest setting at which you should set your AirSep when used with a chamber), you run the risk of the bag on the mask collapsing, and breathing in your own carbon dioxide.
I would definitely bring this up with your doctor (if it is indeed a non-rebrether mask)...
A standard "Hudson" (aka "simple" mask) that covers both your nose and mouth is adequate, and safer for this application...
Posted by Haley (Member # 22008) on :
Why do people use a rebreather mask as opposed to a non-rebreather mask? Just curious. Mine has the bag on it.
Posted by Phoiph (Member # 41238) on :
The "partial rebreather" and "non-rebreather are both "reservoir" masks (with a bag).
A non-rebreather mask has 1 way valves that prevent the rebreathing of carbon dioxide PROVIDING the flow is high enough (10-15 LPM) to keep the bag at least 1/3 filled with 02. It has to make a tight seal, and if the flow is not adequate and the bag deflates too much, the person could be deprived of oxygen. With proper flow and seal, it can deliver 90-100% 02.
A partial-rebreather mask is similar but has open valves that allow a portion of room air to enter and mix with 02. It also allows rebreathing of some carbon dioxide, which is sometimes necessary in certain illnesses (e.g. COPD) where the person's body requires this "cue" to continue the breathing response. The bag must be kept at leat 1/3 full, and the 02 flow requirement for the non-rebreather mask is 8-12 LPM. With proper flow, it can deliver up 60-90% 02.
People using either reservoir masks require supervision to make sure the bags stay inflated at all times.
The "Simple" or "Hudson" mask does not have a bag...it is just a mask that covers the nose and mouth with holes on the sides to allow carbon dioxide release and mixing of some room air with the 02. The flow requirement is 6-10 LPM, and with proper flow, delivers up to 60% 02.
Although the simple mask may not deliver as high of a percentage of 02 as the reservoir (bag) masks, it is an adequate and much safer option for use with a home hyperbaric chamber...
Posted by foxy loxy (Member # 47053) on :
Thanks toyswalk for the shared camaraderie!
Yes, Phoiph, the mask IS a rebreather mask... Shoot! I was excited about it. Thanks for the heads up. I was hoping you would have something to say on the matter!
Def. will be asking my Dr. about it. So far I seem to be responding to it anyway so maybe I don't care! Yay! Yay! and Yay! LOVE my tank so far!!!
Posted by Haley (Member # 22008) on :
Thank you
Posted by soccermama (Member # 35101) on :
Can someone enlighten me on the difference between a concentrator with single flow versus dual flow and whether or not you need an oxygen monitor?
Thanks!
Posted by Phoiph (Member # 41238) on :
A single flow concentrator has 1 hook up port (for one person), and a dual flow has 2 hook up ports, to accommodate 2 people at the same time.
On a dual flow, the Liters Per Minute (LPM) is also split between the 2 people (in other words, a 10LPM unit will only put out 10LPM regardless of having 2 ports).
A built in oxygen monitor is an essential feature on a concentrator in my opinion, because it will sound an alarm if the purity drops below 80% (on an AirSep) for any reason. (Otherwise, how would you know there was a problem?)
Posted by jcarlnew (Member # 45378) on :
Phoiph,
Just for clarity purposes, some concentrators have a green light on them also. I have two that don't have the light but have the alarm. Are you saying to just have the alarm as a minimum or the light also. In addition, you can take the concentrator to many local oxygen providers and they will put a gauge on them to tell you what your unit is producing.
Posted by Phoiph (Member # 41238) on :
Hi Jcarl...
Different manufacturers have different lights and audible alarm indicators.
The AirSep New Life Intensity 10LPM, if equipped with the oxygen monitor feature, has a yellow light and audible alarm if 02 levels drop beneath a preset level. When the unit is first turned on and is warming up, the alarm sounds briefly, and the yellow light will come on. It will go off when the unit has reached the desired 02 levels.
The SeQual Integra 10LPM, if equipped with the oxygen monitor feature, has a green, yellow, red light, and audible alarm.
While warming up, all 3 lights will come on and the alarm will sound briefly, then the red and yellow lights will go off when the unit reaches optimum 02 levels.
At normal operating 02 levels, the green light is activated. At slightly lower than normal levels, the yellow light will come on (but no audible alarm). The red light activates and the unit alarms (and may shut down) if 02 levels fall well below normal levels and/or the system otherwise malfunctions.
I'm not sure about other kinds of concentrators, but you can look up operating manuals online.
Yes...oxygen equipment suppliers have 02 monitors (these are expensive to buy) and they will usually check the 02 output of the concentrator for you. It is a good idea to have the 02 output checked after a concentrator has been shipped...or periodically if your unit doesn't have an oxygen monitor feature.
Also...the external filter should be cleaned weekly (or more often if you have pets)...just wash in warm soapy water and air dry thoroughly before replacing.
My area is dusty, so I often take the filter outside and clap it between my hands in between cleanings.
Posted by soccermama (Member # 35101) on :
How can you determine the life of the compressor. Do they have hour meters like the oxygen concentrators?
Posted by Phoiph (Member # 41238) on :
Yes, they have "odometers" which show how many hours they have been used. Some are external, some are internal, some are analog, some digital, depending on the age and make of the concentrator.
The quality concentrators are designed to be run 24/7, for tens of thousands of hours. A 3 year warranty could potentially cover almost 26,000 hours if the person was using it continually.
If you are thinking of buying a used unit, although you can't be sure of the history, it should still come with a warranty (usually a current warranty isn't transferrable from private owner to private owner though....).
Posted by Marnie (Member # 773) on :
For those still considering HBOT therapy...
Here is a link to how HBOT effects the immune system:
HBOT stabilizes CREB ***(= cAMP responsive element binding protein)***:
Elevating cGMP is under trials for AD via inhibiting PDE9 - preventing cGMP breakdown.
PDE4 breaks down cAMP. cAMP -> CREB. PDE4 inhibitors are being researched to treat "autoimmune" as well as fragile X (have less cAMP).
Forskolin + ginger?
Posted by soccermama (Member # 35101) on :
Fascinating articles! I'm hoping that HBOT will improve restorative sleep.
Phoiph, have you heard of an onyx concentrator? Is it ok to get another type of concentrator as long as it run 10LPM with 20 PSI?
Posted by Nula (Member # 38409) on :
So far, I've only read 7 pages of this thread, but will read all of it once the brain fog clears.
Thanks so much to ALL of you for sharing your mHBOT stories. Greatly appreciated :-)
I'm considering mHBOT treatment but have a full-blown case of babesia WA1/duncani (IGeneX PCR/FISH test positive) ...
Is there anyone on here doing mHBOT despite a Babesia duncani diagnosis? And in this case I am not referring to a clinical diagnosis, but a positive PCR/antibody/FISH test?
Thanks!
Posted by Phoiph (Member # 41238) on :
soccermama...
The Onyx is made by Airsep, and is their model marketed for "industrial" purposes (e.g., jewelry making, glass blowing, etc.).
It doesn't have the built in oxygen purity monitor option, and from what I can tell, it doesn't appear to be less expensive than the AirSep New Life Intensity...
I had a positive Babesia blood smear prior to starting mHBOT...
Posted by Nula (Member # 38409) on :
Thank you, Phoiph :-) Will respond to your PM as soon as I get the chance!
Posted by foxy loxy (Member # 47053) on :
Nula, I have tested positive for Babesia... TWICE. And I am two and a half months in on mild HBOT.
When I first started, I will admit to feeling like I maybe had a babesia flare. Air hunger, sweaty, etc. but since that flare, it improved.
My Dr. said he often keeps his patients on Babesia meds because he wonders if mHBOT doesn't work as well for that infection. He doen't believe it makes it worse, in his experience.
Hope this helps! Posted by Nula (Member # 38409) on :
Thank you, foxy loxy. This is very helpful!!
Posted by spinning122 (Member # 42223) on :
Hi Nula,
I have also tested positive for Babesia (and Bart)...had treated previously with the typical Babs meds but it kept "coming back".
Fast forward to 658 (1-hr daily) dives later... I didn't realize that I have no Babsia symptoms anymore, didn't even realize it until you asked about it.
Phoiph you'll be happy to hear that I finished another quarter at school with straight A's..only able to take a couple classes at a time but working my way through slowly but surely.
Still dealing with what I feel are brain/gut/hormonal issues though. Severe fatigue and feeling of set back if I am stressed or push myself too much (and by push I mean trying to be normal doing normal ppl things).
I wish you all a happy new year full of hope and healing. I am not out of the woods yet but making my way slowly through it. My greatest advice would be to feed yourself with only the most nourishing foods, supplement as needed, get adequate and restful sleep every day, and just keep on diving.
Posted by joahsark (Member # 20598) on :
Phoiph ( or anyone with severe brain symptoms), as I've posted, severe brain pressure and the dizziness , anxiety etc that go along with that are my most horrible symptoms, it never lets up only has degrees of intensity.
My question is that mostly every time I'm in the chamber it gets dramatically worse as the pressure climbs. I have been able to get up to full pressure with the concentrator and have been doing it mostly daily except for a three week break recently due to a horrible brain herx, 30 dives total. I feel a lot more sick inside the chamber. Is this normal while healing the brain or something that may be dangerous? Thank you, trying not to give up.
Posted by joahsark (Member # 20598) on :
Phoiph ( or anyone with severe brain symptoms), as I've posted, severe brain pressure and the dizziness , anxiety etc that go along with that are my most horrible symptoms, it never lets up only has degrees of intensity.
My question is that mostly every time I'm in the chamber it gets dramatically worse as the pressure climbs. I have been able to get up to full pressure with the concentrator and have been doing it mostly daily except for a three week break recently due to a horrible brain herx, 30 dives total. I feel a lot more sick inside the chamber. Is this normal while healing the brain or something that may be dangerous? Thank you, trying not to give up.
Posted by Phoiph (Member # 41238) on :
spinning123...
Thanks for the update! CONGRATULATIONS on not only your accomplishments with going back to school (and straight A's), but your commitment to mHBOT...
And...for understanding that this is a journey/process, and it continues to evolve. I experienced improvements/enhancements even after 2 years of diving, well beyond when I thought I was back to pre-Lyme baseline.
(BTW, I'm now at 4-1/2 years of diving, and I had a very stressful 2015...lost my mom and aunt within 3 months of each other, 2 friends took their lives [one with Lyme], made multiple trips back and forth across country...cleaning out their homes, making arrangements, settling affairs, etc., and have kept the pace without any signs of regression.)
I also agree with and appreciate your simple advice to others. I often marvel at how long, circuitous, complicated, and confusing the Lyme maze was for me, when it all came down to a simple plan. All part of the "journey"...
Posted by Phoiph (Member # 41238) on :
joahsark...
How fast are you pressurizing?
Posted by foxy loxy (Member # 47053) on :
joahark, I too have a lot of brain symptoms. I have head pressure, waves of anxiety and quite a variety pack of neurological head sensations.
I too have seen it feel worse sometimes in the chamber. Nothing so scary though that it makes me want to quit.
Just wanted you to know you are NOT alone even though it may seem like it.
I actually haven't seen many people with this issue. Even my Drs kinda look at me like huh? Mostly no pain. Just misery.
Posted by spinning122 (Member # 42223) on :
Yes, I agree with foxy loxy, joahsark... you're not alone with severe brain symptoms. Although I have largely controlled these symptoms with a low-salicylate ketogenic diet and magnesium supplementation. How are your magnesium levels?
Perhaps intercranial pressure is a problem since it gets worse with the diving pressure added? If this is the case, I find pressing firmly on certain points at the back of the skull useful for releasing this pressure buildup:
Basically, I lie face down on a massage table and have my mom use her elbow to gently but firmly rock against specific points all along the base of the skull.
Phoiph, what incredibly stressful and painful times these must have been. All the more gratitude I feel towards you for so generously donating your time and effort to help all of us, THANK YOU!
Posted by Monti (Member # 45718) on :
I agree with spinning122 in regards to all the Phoiph does for us. What a difficult time you had to endure. How incredible it is that the amount of stress you dealt with didn't knock you down.
Posted by Phoiph (Member # 41238) on :
Thank you very much for the sentiments!
I'm just VERY grateful it all happened when I was well and could handle it...and not when I was ill...it would have been completely devastating at that time.
It is a testament to mHBOT...
Happy 2016 to everyone!
Posted by purplehaze (Member # 40385) on :
HAPPY NEW YEAR TO ALL HERE and happy safe diving in 2016
spinning122, could you please elaborate on the low- salicylate ketogenic diet, what did yours consist of exactly, I'm curious
Posted by spinning122 (Member # 42223) on :
Hi purplehaze,
I am hesitant to give diet advice because I'm rather unusual in that foods high in salicylates (basically most plant matter and the yummiest stuff like avocados ) tend to give me migraines (I have not figured out why yet), but I wouldn't necessarily recommend it for anyone else? Basically, you have to work out what works for you since we ar
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