Long-term daily mHBOT and full recoveries w/ ongoing maintenance

Jesse2233

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Another ME patient on FB
Yes, for months after [beginning HBOT] I started to feel more like my old self, I feared a crash. but . . . it never happened and then neither did post exercise malaise.  

I was quite a severe house/bed bound Meep before I started. I try and avoid the word cure, but I refer to myself as being in long term remission. :)
From the same patient on another thread
I was very poorly when I started. I had trouble sitting upright for the whole hour and a quarter (1 hour 'dive' and the rest pressuring up and down after.)

I had to have my neck brace, special cushion and a foot stool. I had tremendous pain staying in one position - except recl;ined. I was 90% housebound and 50% bedbound. After about 4 - 6 months, I was virtually like my old pre M.E self. I can't describe the joy that I felt. The early days/weeks were hard though. So persist. :)
 
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Jesse2233

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I would be remiss if I didn't also share this FB patient's negative experience
I had a terrible experience with it, made me bedbound the day after treatment, with feelings of being poisoned/hungover. After the third session which I managed to drag myself to, I came out in big red spots all over my torso. I couldn't go back and basically after that had a full relapse of my CFS/ME with new symptoms I hadn't had before - I haven't fully recovered from HBOT and it's now more than 2 years down the line. When HBOT was first mentioned to me I had a feeling ti wasn't for me for some reason even though the person recommending had great experience with her. Further down the line I became desperate and looking for anything to help me. My advise to you would be go with your gut feeling - what was your initial thoughts when you first heard about it. Also, don't make decisions from a place of desperation. Good luck whatever you decide.
The group seemed to feel that if she had gone back and done further treatments she would've passed through an initial difficult phase. I have heard that mentioned elsewhere but can understand someone not wanting to keep "touching the hot stove that burned them"
 

Jesse2233

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Hello! Thought I would give an update on my treatment. I have CFS/ME and Fibromyalgia. I have had 8 sessions of HBOT, originally for Fibromyalgia.
But I believe it has helped my CFS! Last week, my stepmother gave me one of her rescue dogs to take care of and keep me company, a sweet pug mix. I realized I have enough energy to take her for several walks a day, which was a great surprise! I was very worried at first, because while I knew the dog would help me emotionally, I was unsure if I could provide proper exercise. As we know, even with the best motivation, that energy doesn't just come. But I have had the dog for a week, and I have done very well. I am by no means recovered, but this is a big step forward. I have been waiting for the collapse all week, but my stamina is consistent l and my pal helps with my anxiety and keeps me in the moment.
I do get some chest pain after my session- anyone else have this? It is not severe and NOT oxygen toxicity, just soreness.
Thank you and I would love your input! ❤️
 

ljimbo423

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The group seemed to feel that if she had gone back and done further treatments she would've passed through an initial difficult phase. I have heard that mentioned elsewhere but can understand someone not wanting to keep "touching the hot stove that burned them"
I thought the same thing while reading her post. The 2 best treatments I have done, both made me VERY sick to start. One was methylation and the other is gut treatments.

After many tries, I found ways to minimize the side effects of both treatments so they were much more tolerable. I certainly understand why she didn't pursue treatment any further though.

Jim
 

Jesse2233

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After many tries, I found ways to minimize the side effects of both treatments so they were much more tolerable. I certainly understand why she didn't pursue treatment any further though.
Thanks Jim

What did you do to minimize side effects? And what was your functionality before and after HBOT?
 

ljimbo423

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Thanks Jim

What did you do to minimize side effects? And what was your functionality before and after HBOT?


Hi Jesse2233 - The side effects I mentioned were regarding the gut and methylation treatments I did. I haven't done HBOT treatments.

HBOT treatment sounds very interesting though and safe. These stories you have posted are really intriguing.
 

ErdemX

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I have tried HBOT in a hard chamber at 2.3 ATA for 41 sessions.

After the first 2-3 sessions my fatigue got much worse, I had to rest 5-6 hours without moving and speaking after each session, it was such a crushing fatigue. During that period I could only go 3 times a week. After 3 weeks I got back to my normal and never had this or any kind of negative effects.

I continued for 2 months, usually 5 days a week. At the end I was slightly better in terms of energy. But it was a very hard job to do 5 times a week. I was planning to do at least 80 or 100 sessions, because some people report late responses. Then I decided to give a small break, and unfortunately after that I decided to try a completely different treatment option and never went back.

So maybe I can try it again but not easy for a moderate CFS patient 5 days a week for many months.

I must also say after 20-30 sessions my skin started to glow with a younger and healthier tone, and I am not kidding :) So many people said that and I could easily notice it.
 

voner

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I have tried HBOT in a hard chamber at 2.3 ATA for 41 sessions.

After the first 2-3 sessions my fatigue got much worse, I had to rest 5-6 hours without moving and speaking after each session, it was such a crushing fatigue. During that period I could only go 3 times a week. After 3 weeks I got back to my normal and never had this or any kind of negative effects.

I continued for 2 months, usually 5 days a week. At the end I was slightly better in terms of energy. But it was a very hard job to do 5 times a week. I was planning to do at least 80 or 100 sessions, because some people report late responses. Then I decided to give a small break, and unfortunately after that I decided to try a completely different treatment option and never went back.

So maybe I can try it again but not easy for a moderate CFS patient 5 days a week for many months.

I must also say after 20-30 sessions my skin started to glow with a younger and healthier tone, and I am not kidding :) So many people said that and I could easily notice it.
@ErdemX,

do you have pain or autonomic dysfunction and if so, did the Hbot change it? is it expensive in your country?
 

Jesse2233

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Just visited a local HBOT clinic with hard full pressure units that recently opened but is not yet seeing patients.

The tech there said he'd previously seen success with Lyme patients also on antibiotics. Neither he nor the onsite doctor knew much about ME/CFS.
 

gettinbetter

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Can you share where? My HBOT friend will be there for a month and may need one. Is there one in or near SF?
Bay Area Hyberbarics
Los Altos about an hour from SF
Los Gatos
https://www.bayareahyperbarics.com/
(408) 356-7438

Hyperbaric Oxygen San Francisco
in San Francisco
https://www.hbotsf.org
1-415-563-3800

There is another one in Concord about 45 minutes from San Fran
I have to check with him to confirm
 
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Does anyone know how HBOT would compare to actual diving with air or nitrox? I'm assuming effects would be similar (if we forget about the physical preparations for actual dive).

I was diving every summer before CFS and ended up quite tired after every dive. I have a SOD2 mutation so perhaps extra oxygen is the last thing I need?
 

ryan31337

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Does anyone know how HBOT would compare to actual diving with air or nitrox? I'm assuming effects would be similar (if we forget about the physical preparations for actual dive).

I was diving every summer before CFS and ended up quite tired after every dive. I have a SOD2 mutation so perhaps extra oxygen is the last thing I need?
This is what I was getting at with my joke earlier.

I guess this is a chance for a fun exercise to stretch my brain and try to remember those diving certs! Those soft chambers state 1.3 atmospheres of pressure, which would be equal to diving in 3M of water. I don't know what the air compressor manages in terms of oxygen concentration but would imagine standard blends of nitrox would easily match or surpass it? So a swimming pool + nitrox is perhaps not a lot different from a physics point of view.

I was really quite surprised to see clinical use of 100% O2 at 2ATM....diving instructors would have a fit. Its drummed into us that going over a pO2 of 1.6 is going to kill us dead, but I suppose it is better to be overly cautious :D
 

Butydoc

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I might mention that HBO was very effective in decompression sickness, carbon monoxide poisoning and ischmie
This is what I was getting at with my joke earlier.

I guess this is a chance for a fun exercise to stretch my brain and try to remember those diving certs! Those soft chambers state 1.3 atmospheres of pressure, which would be equal to diving in 3M of water. I don't know what the air compressor manages in terms of oxygen concentration but would imagine standard blends of nitrox would easily match or surpass it? So a swimming pool + nitrox is perhaps not a lot different from a physics point of view.

I was really quite surprised to see clinical use of 100% O2 at 2ATM....diving instructors would have a fit. Its drummed into us that going over a pO2 of 1.6 is going to kill us dead, but I suppose it is better to be overly cautious :D
Oxygen toxicity can cause damage to cells as the partial pressure of O2 increases. Typically treatments were performed for 90 minute at 2ATM with 100% O2. We really didn't see evidence of O2 toxicity. Occasionally we would see barotrauma. To your point above, at 33 feet depth at 100 percent 02 for 90 minutes should be equal a hard chamber HBO. I have been a certified diver for 48 years and nitrox for the past 10 years.