CD57
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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,
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Phoiph
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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...
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CD57
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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)?
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Phoiph
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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.
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CD57
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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)?
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Phoiph
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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.
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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~
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Phoiph
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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...
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CD57
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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?
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CD57
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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?
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CD57
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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?
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Phoiph
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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...
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posted
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.
-------------------- Hi all, I was diagnosed with Lyme in 2008. Co-infections: Babesia & Bartonella. Currently treating Babs with Infuserve Cryptolepis and Lyme with mHBOT. Posts: 16 | From VA | Registered: Aug 2013
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Tanya, Can you give us any information as to what LymeMD is experiencing with his patients using mild HBOT.
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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.
-------------------- Hi all, I was diagnosed with Lyme in 2008. Co-infections: Babesia & Bartonella. Currently treating Babs with Infuserve Cryptolepis and Lyme with mHBOT. Posts: 16 | From VA | Registered: Aug 2013
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TNT
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Phoiph, do/did you have PR? Or, do you know if HBOT works for those with PR?
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Phoiph
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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"...
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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
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TNT
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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.
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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.
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CD57
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Phoiph I would also be interested in anything you might have to say about bartonella, as it also likes oxygen.
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CD57
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Phoiph I would also be interested in anything you might have to say about bartonella, as it also likes oxygen.
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Phoiph
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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...
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Phoiph
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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...
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CD57
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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. Posts: 3528 | From US | Registered: Apr 2007
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CD57
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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. Posts: 3528 | From US | Registered: Apr 2007
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Phoiph
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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...
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2roads
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What about for an adolescent?
Any thoughts on this?
Thanks-
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Phoiph
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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...
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2roads
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I wouldn't want him more hyper than what he is.
Is that what you mean when u say it increases metabolism?
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Phoiph
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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.
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TNT
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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.
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Phoiph
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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...
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posted
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.
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Phoiph
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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...
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TNT
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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.
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posted
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.
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Phoiph
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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...
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TNT
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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.
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Phoiph
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Wow Lyme brain, I meant "about my progress"
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CD57
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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.
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posted
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.
TNT
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Hi spinning122,
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
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TNT... PM'd you :-)
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Phoiph
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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...(?)
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
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.
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