kgg
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Member # 5867
posted
lymenotlite, I am so sorry to hear of your recent diagnosis.
Phioph, thank you for the article on the "vaccine". I have yet to meet anyone who plans on taking the vaccine. But my circles are limited.
Posts: 1557 | From Maine | Registered: Jun 2004
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posted
Dpei, I was told by an expert and that was previously thought to be the case by my primary care person that it was not operable.
Phoiph, thanks for the keto link. A friend from out of the area has recently warned me about the same thing concerning the RNA issue. I have an herbal tincture for Covid that I put together from lyme herbs I had made up earlier but didn’t use. No question the echinacea I’d made up for lyme has already helped and I’m being advised by an herbalist as well. I’ve been told by a friend via phone call that I sounded better today. Only a day but encouraging.
I’ve decided today I’m not going to die from this.
Posts: 702 | From WA state | Registered: Jul 2011
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
lymenotlite, it sounds like you are strong and hopeful and those are a good combination of traits for fighting cancer.
As far as Covid goes, getting the vaccine is a very personal and difficult decision for each of us. I have been trying to gather as much info as I can in order to make the best decision for myself and found some great info here:
posted
Has anyone heard from Spinning123 or HW88 lately? I was wondering if mHBOT helped them overcome all their infections or if they needed to add something else to their protocol. Thank you!
Posts: 2 | From CO | Registered: Dec 2020
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posted
Phoiph, do you know how many people you have helped who have overcome all their infections with only doing mHBOT? I am just wondering if I should hedge my bets on only mHBOT, or if I should add something to it. I have been infected for 29 years Thank you so much to everyone who posts on this forum! It has been a wealth of information!
Posts: 2 | From CO | Registered: Dec 2020
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Phoiph
Frequent Contributor (1K+ posts)
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posted
Welcome, Lady T,
I can't give you numbers, but I can tell you that there have been many, many people who have recovered their lives with mHBOT. Not everyone posts here on LymeNet.
Also, everyone has a different history, including infections, genetics, and environmental factors, which all play a part in their recovery path.
If you'd like to go over your individual situation (and how it might compare to others) in more detail before you make a decision, you can PM me with your contact info, and I'll give you a call.
Posts: 1541 | From Earth | Registered: Jul 2013
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Despite daily dives over the past year, I have been on a bit of a decline and continue to struggle with the difficult decision as to whether to have jawbone cavitation surgery. My dentist (and his interpretation of a conebeam x-ray) tells me that it is likely the cause of my symptoms of facial, ear and skull pain.
I saw a new LLMD, who would like me to consider the dapsone protocol for persister lyme. He tells me he has seen great success with this protocol for some of his patients who have struggled with lyme for many years, especially those who are positive for borellia miyamotoi, like me, with cranial nerve damage.
This new LLMD is also a big fan of mhbot, but he tells me that it is contraindicated with dapsone. I know that disulfram is contraindicated, but I have not been able to find anything about dapsone being contraindicated with hbot. When I told my new LLMD how much the mhbot has helped me on a daily basis, he told me that I could try to use it without O2 and see how I do.
Does anyone here have experience or knowledge of dapsone and hbot? I had hoped to be able to heal without drugs by mhbot and healthy life style alone, but these darn persister bugs are likely living in some hard to reach places in my jaw, ears and skull.
Thanks so much for any insights or info you might have on this.
Posts: 2352 | From New England | Registered: Aug 2011
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
dbpei, I think it is because the use of Dapsone is so new that you won't find research with it in regards to mHBOT. I had a friend try Dapsone when they first started using it for Lyme patients. She was on a high dose and had a really hard time. I believe since then they have started using a lower dose. But please discuss with you doc what level of dose does he/she prescribe. It did not really help her. But there are people who iy made a big difference.
Posts: 1557 | From Maine | Registered: Jun 2004
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dbpei
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Member # 33574
posted
I tried it for a few days and it was brutal. But I took the doxy and rifampin as well, which were hard on me in the past, so I am not sure if it was the dapsone or the other ABX bothering me. I had extreme nausea, head pressure and felt toxic all over.
I decided to stop for now and may try again later. It does seem promising from what the new doc told me, but also scary. Dapsone is supposed to be a pretty safe drug compared to disulfiram from what I have read, but I want to continue to do more research on it. Thanks kgg.
Posts: 2352 | From New England | Registered: Aug 2011
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kgg
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posted
Good decision imo.
Posts: 1557 | From Maine | Registered: Jun 2004
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Phoiph
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Member # 41238
posted
dbpei~
Is it possible that the reason your doctor believes that mHBOT is contraindicated with Dapsone, is because it may reduce or negate its action?
Hyperbaric oxygen is mentioned in the literature as a treatment/antidote for overdose/low oxygen condition that can develop with Dapsone use:
posted
Hello All One of the members here documented her progress recovering from lyme on youtube I forget her name and I can't find the videos Is it still up and if so where is it? Thanks
Posts: 247 | From California | Registered: Sep 2017
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dbpei
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Member # 33574
posted
Hominahomina, I think you might be referring to Peimomma (or similar to that?)
That is an interesting concept, Phoiph. With hbot being a treatment for a dapsone overdose, it would make sense that he might think it could reduce its action. I will try to find out more from him about this. Thank you!
On a totally different note, I hope and pray that all of you on this thread are safe and warm with this awful cold snap that is hitting much of our country right now. My heart goes out to all without power and I pray it returns for you soon. Stay safe everyone.
Posts: 2352 | From New England | Registered: Aug 2011
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Phoiph
Frequent Contributor (1K+ posts)
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posted
Homina~
Here are the links that I have to Peimomma's progress videos:
posted
Hi, I have been treating with hbot for 2 1/2 years daily with no breaks. At this point should I be taking 1 day a week off? There are concerns about long term use with higher pressures, I don't see any info on mild hbot long term.
I have CFS - proposed mechanism being a genetic weakness where Chlamydia Pnuemonia is able to infect the bone marrow - a perpetual loop of the white blood cells being used as a transport system to further infect rather than un-infect. I am improving, but the needle only started moving(nerve damage reversal) when the antibiotics were applied with hbot and the healthy diet/lifestyle.
Posts: 15 | From Michigan | Registered: Dec 2017
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Phoiph
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posted
Hi tom f,
How long has the "needle been moving" in the right direction?
Posts: 1541 | From Earth | Registered: Jul 2013
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posted
Hi all, is it okay to post about a barely used (almost new) mHBOT I'm selling? I am a person with ME/CFS and lyme. Thanx!
Posts: 8 | From Boston | Registered: Aug 2020
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Phoiph
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posted
Hi Red 101,
It doesn't sound like you used your chamber much...just wondering why you decided to sell?
Posts: 1541 | From Earth | Registered: Jul 2013
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posted
Hi Phoiph, 2 years of slow continuous improvement of fatigue and nerve damage reversal in legs, hands/wrists, face, tongue - pretty much nerve damage everywhere 60-75% improvement. The nerve damage happened so slowly over a long period that I have no reference of without nerve damage is. I also had clinical signs(Cogwheeling) of Parkinson's completely disappear. This ongoing proven damage to the substantia nigra of the brain pushed me towards adding antibiotics.
What's your opinion about mild hbot everyday with no breaks. Long term continuous hbot at higher pressures mention dna damage.
[ 02-28-2021, 08:45 PM: Message edited by: tom f ]
Posts: 15 | From Michigan | Registered: Dec 2017
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It doesn't sound like you used your chamber much...just wondering why you decided to sell?
Hi Phoiph,
Thank you for asking. I actually already have a Newtowne 34" chamber that I'm using almost daily (240 dives completed). This other chamber that I'm selling for a friend, a Newtowne "Walk In" chamber, is almost brand new. Barely used. Only inflated 10 times, for less than 1 hour total, for all the inflation times combined. So it is like new. A friend bought it for his wife and soon decided he found the Newtowne zippers frustrating (many of us do, I think, but there are also some good pros about the Newtowne chambers). My friend decided he wanted to get a Summit to Sea vertical chamber. So he did, and now I'm helping him sell the Newtowne Walk In. I guess it is okay to include the description of the chamber, and my "ad" here?
Best, Red101
Posts: 8 | From Boston | Registered: Aug 2020
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Phoiph
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Member # 41238
posted
Red 101,
I was just concerned you might be selling your own chamber; glad to hear you're not.
It is really up to the moderators whether your post will be deleted or not. If it is, you can always just post that you have a chamber for sale, and that anyone interested can PM you for details.
People often contact me looking for used chambers, so I will let them know.
Posts: 1541 | From Earth | Registered: Jul 2013
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Phoiph
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Member # 41238
posted
tom f,
You have made great progress!
Deciding when it is time to reduce the frequency of your dives is a very individual thing.
I did mHBOT for 2.5 years daily. I thought I was doing quite well at 1.5 years (compared to how ill I was), but I continued daily for another year and made many significant gains.
After 2.5 years, I reduced the frequency of dives because I was doing well and felt solid, and my body truly felt as if daily dives were now not necessary, and possibly "too much". If I had still been progressing and not felt completely well, I would have continued diving daily.
It sounds as if you are still making significant gains with your daily dives, and I think if you tune into your body's wisdom, you will know when it is time to reduce. If you do decide to do so, try to keep your remaining dives back to back.
Posts: 1541 | From Earth | Registered: Jul 2013
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People often contact me looking for used chambers, so I will let them know.
Thank you! That is kind. I'm motivated to sell it, as I'd like to get it out of my home soon, but do not want to pack it up just yet in case someone wants a zoom "tour" of it. But having two mHBOTs in one home office does not leave much room for my walking to my computer desk. :-)
Posts: 8 | From Boston | Registered: Aug 2020
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May I ask you a question about using my HBOT? I have had ME/CFS/Lyme for decades. I'm pretty sick, mostly homebound and often bedridden. I started mHBOT spring 2020 and slowly titrated up to about 20-30 minute dives without supplemental oxygen. If I did more, I felt too toxic the next day, even with using dry skin brushing and apple pectin for detox. Similarly, if I added supplemental oxygen (with or without diving), I got sicker. So my regime was simple: No supplemental oxygen, and nearly daily dives of about 20-25 minutes each, sometimes twice a day. I was thrilled when I slowly started to be able to go on pleasurable nature walks for the first time in years and years. Then I crashed. Hard. I lost all gains. I crashed hard for 2 months (no idea why), and only did a dive once every 4-5 days. Now I've restarted a near daily routine, for the last month or so, but with no gains. I'm not sure why I crashed. Could it be due to oxidative stress? Any hints welcome. Thank you for your thoughts. Thank you to others for their thoughts too!
Posts: 8 | From Boston | Registered: Aug 2020
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posted
Just curious How many of you are planning to get vaccinated if so why? How many of you are not planning to get vaccinated if so why not?
Thanks
Posts: 247 | From California | Registered: Sep 2017
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
It is a very personal and difficult decision for all of us with chronic illness, so I don't cast judgment on anyone for their choice. I decided to get the vaccine because the thought of getting severely ill or dying from Covid scares me more than potential harm from the vaccine.
I did get the first Pfizer vaccine 2 weeks ago and only had some mild soreness in my arm. I could have more of a reaction with the second shot, but I am going to keep doing what I've been doing (healthy living and diet, supplements, exercise, mhbot, ...) and hope we can see some light at the end of this long and dark tunnel.
posted
Thanks dbpel I will check out the webinar
Posts: 247 | From California | Registered: Sep 2017
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kgg
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posted
I am not getting the vaccine. I do not pass judgment on anyone who is. But I was functional and working as a nurse until I had the Hep B vaccine series. Had to stop working. Many years later my husband convinced me to take the preservative free vaccine for the H1N1 flu because I do not get the flu shots. He was concerned that it was a really virulent strain. I had three weeks of worse fatigue and shooting pains all over my body. This woman is only getting a tetanus shot from now on. And then only when I need it.
Posts: 1557 | From Maine | Registered: Jun 2004
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Phoiph
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posted
quote:Originally posted by Red101: Phioph,
May I ask you a question about using my HBOT? I have had ME/CFS/Lyme for decades. I'm pretty sick, mostly homebound and often bedridden. I started mHBOT spring 2020 and slowly titrated up to about 20-30 minute dives without supplemental oxygen. If I did more, I felt too toxic the next day, even with using dry skin brushing and apple pectin for detox. Similarly, if I added supplemental oxygen (with or without diving), I got sicker. So my regime was simple: No supplemental oxygen, and nearly daily dives of about 20-25 minutes each, sometimes twice a day. I was thrilled when I slowly started to be able to go on pleasurable nature walks for the first time in years and years. Then I crashed. Hard. I lost all gains. I crashed hard for 2 months (no idea why), and only did a dive once every 4-5 days. Now I've restarted a near daily routine, for the last month or so, but with no gains. I'm not sure why I crashed. Could it be due to oxidative stress? Any hints welcome. Thank you for your thoughts. Thank you to others for their thoughts too!
Red101,
I'm so sorry to hear about your "crash". It is so disheartening to have experienced improvement, only to be followed by a setback.
In my experience, some of the reasons someone might experience initial gains followed by a setback are:
1. Moving forward too fast with mHBOT instead of working up slowly, especially in the beginning; and/or doing too many or too long of dives per day
2. Adding on ancillary therapies which may cause causes too rapid of detox, and/or toxic overload
3. Overdoing physical activity too soon, due to feeling better
4. Toxic environmental exposures
5. Highly stressful events
6. Failure to maintain clean diet, and gradual, graded movement routine (e.g., yoga)
It doesn't sound like you started up too rapidly, as you seemed to find a pace that worked for you.
My guess is that even though you were improving, you may have not been ready for the degree of physical activity you engaged in.
I also suspect that if you dig deeper, you might remember something that happened or changed around that time. Let us know if you think of anything, even if seemingly insignificant.
I am glad to hear you are back at mHBOT. Try not to be discouraged about not experiencing gains yet; I am optimistic that you will given time.
Posts: 1541 | From Earth | Registered: Jul 2013
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posted
"I also suspect that if you dig deeper, you might remember something that happened or changed around that time. Let us know if you think of anything, even if seemingly insignificant."
Thank you, Phioph, for your kind and informative reply. I did start a very low dose of a new med and new supplement around that same time. But I had tolerated it for weeks before this crash came on... so I'm not sure. Perhaps you are right about taking on too much physical activity. I was walking, but it did not seem like too much. I sloooooooowly increased it. Ah well, like I said, I'm trying again. I so appreciate your weighing in like this. Thank you!
Posts: 8 | From Boston | Registered: Aug 2020
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Phoiph
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posted
Red101~
Sometimes it takes awhile for a substance to build up in the body and reach a "tipping point"...
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