The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

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

Discussion in 'General Treatment' started by Jesse2233, Sep 4, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    Another ME patient on FB
    From the same patient on another thread
     
    Last edited: Sep 7, 2017
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  2. Jesse2233

    Jesse2233 Senior Member

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    I would be remiss if I didn't also share this FB patient's negative experience
    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"
     
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  3. Jesse2233

    Jesse2233 Senior Member

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    Another FB account
     
  4. ljimbo423

    ljimbo423 Senior Member

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    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
     
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  5. Jesse2233

    Jesse2233 Senior Member

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    Thanks Jim

    What did you do to minimize side effects? And what was your functionality before and after HBOT?
     
  6. ljimbo423

    ljimbo423 Senior Member

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    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.
     
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  7. ErdemX

    ErdemX Senior Member

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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.
     
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  8. Jesse2233

    Jesse2233 Senior Member

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    thanks for sharing that @ErdemX

    Besides the energy and the glow did you notice any improvements in areas like brain fog or restorative sleep?
     
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  9. gettinbetter

    gettinbetter Senior Member

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    Do you have the link to that group?
    Thanks
     
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  10. Jesse2233

    Jesse2233 Senior Member

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  11. voner

    voner Senior Member

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    @ErdemX,

    do you have pain or autonomic dysfunction and if so, did the Hbot change it? is it expensive in your country?
     
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  12. Jesse2233

    Jesse2233 Senior Member

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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.
     
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  13. gettinbetter

    gettinbetter Senior Member

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    Where are you?
    Thanks
     
  14. Jesse2233

    Jesse2233 Senior Member

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    There are a bunch of clinics here, but these guys were having an open house so I figured I'd swing by.
     
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  15. gettinbetter

    gettinbetter Senior Member

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    There are a few up here in the Bay Area not too many
     
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  16. Learner1

    Learner1 Forum Support Assistant

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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?
     
  17. gettinbetter

    gettinbetter Senior Member

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    San Francisco Bay Area
    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
     
  18. happy

    happy

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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?
     
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  19. ryan31337

    ryan31337 Senior Member

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    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
     
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  20. Butydoc

    Butydoc President

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    I might mention that HBO was very effective in decompression sickness, carbon monoxide poisoning and ischmie
    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.
     

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