The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Long-term daily mHBOT and full recoveries w/ ongoing maintenance

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

  1. ErdemX

    ErdemX Senior Member

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    I don't have autonomic dysfunction but I have a constant high level of pain, which is usually well controlled with Lyrica. So I did not have pain problem at that time.

    I paid 25 Euros for each session (because my condition is not covered by public insurance) with a discount. Normal price should be like 35 Euros for a session.
     
  2. ErdemX

    ErdemX Senior Member

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    I also had some moderate improvement in brain fog, so in general it felt like going to a better direction. But I can't say 41 sessions led to an important improvement.
     
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  3. Hip

    Hip Senior Member

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    Even if Lyme and ME/CFS were the same disease, but just caused by different pathogens, any success that HBOT has in treating Lyme would not necessarily translate to helping virally-triggered ME/CFS, because HBOT may work for Lyme by killing the Borrelia bacteria.

    Borrelia is a microaerobic bacterium (microaerobic = living in environments of very low concentration of oxygen, making it almost but not quite anaerobic).

    Now oxygen is toxic to anaerobic bacteria. Thus the increased blood and tissue oxygen levels achieved during HBOT may conceivably have a bactericidal effect on Borrelia, which is as near as damn it an anaerobic bacterium.

    It says here that:
     
    Last edited: Sep 30, 2017
  4. NotThisGuy

    NotThisGuy Senior Member

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    In the thread the user "Phoiph" said he had bartonella and HBOT was the only treatment that helped him.
    So I don't know if you can determine the success of HBOT by infections of aerobic or anaerobic pathogens
     
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  5. Hip

    Hip Senior Member

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    I can't find the comment you are referring to (and there does not appear to be any user called "Phoiph"). But since people can have Lyme with confections such as Bartonella, it's possible that they did have Lyme without knowing.


    I know one ME/CFS patient on this forum who was taking regular twice weekly HBOT sessions for free at their local multiple sclerosis hyperbaric chamber, and they said that it helped with the tiredness, but no major improvements. And I know another ME/CFS patient who completed a full course of HBOT, but with no noticeable benefits. I have not come across anyone with ME/CFS who achieved major improvements on HBOT, nor any studies showing major benefits (like remissions) for ME/CFS.

    If it were cheap and easy, I'd be tempted to try HBOT for my ME/CFS; but considering the cost, it does not seem like a good value for money gamble.


    This may be of interest: Glisodin supplement protects against HBOT DNA damage.
     
    Last edited: Sep 8, 2017
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  6. NotThisGuy

    NotThisGuy Senior Member

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  7. gettinbetter

    gettinbetter Senior Member

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    Does anyone want to split the cost of a portable HBOT unit here in the Bay Area?
    Send me a private message
     
  8. Hip

    Hip Senior Member

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    Ah, thanks (I thought you were talking about this PR forum thread).

    Phoiph does say on that thread that she "had severe neurological Lyme w/Babesia & Bartonella for 8 years".

    It's interesting that Phoiph says she found it took over a year of daily 1 hour treatments with a soft HBOT chamber to see significant results. It seems like you do have to make a major commitment to this HBOT therapy in order to see results in Lyme disease.
     
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  9. Jesse2233

    Jesse2233 Senior Member

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    @Hip

    If you join this group https://m.facebook.com/groups/208141325919395 you'll see many people with ME/CFS who have achieved remission or near remission with regular, long term, ongoing HBOT. Most of them are in the U.K. and get a substantial discount by going to subsidized MS centers
     
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  10. Hip

    Hip Senior Member

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    Thanks Jesse, I have just now applied to join that Facebook group, and will have read of it. I have an MS charity HBOT centre just over a mile away from me, but unfortunately when I went there a some years ago, they told me it was just for MS patients. It is possible they may have changed their policy now though, so it might be worth me asking again.
     
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  11. aaron_c

    aaron_c Senior Member

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    @Jesse2233 you're saying that many of the people who are recovering with HBOT (or mHBOT?) in the group do not seem to have Lymes?
     
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  12. Jesse2233

    Jesse2233 Senior Member

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    Yes that's what it seems like from what they say. I should note that not all of them are reporting recovery but many are significantly better (functional lives) to a degree I've not seen with other treatment reviews. The common denominator seems to be consistent use over a long period of time.
     
    Last edited: Sep 8, 2017
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  13. Jesse2233

    Jesse2233 Senior Member

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    This is a great in depth overview of HBOT for ME/CFS by Dr Jamie Deckoff-Jones.

    http://www.x-rx.net/blog/2012/04/oxygen-primer.html

    I believe she considers it her most effective treatment, more so than antiretrovirals

    Her conclusion...
     
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  14. Jesse2233

    Jesse2233 Senior Member

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    From PR member @Theodore on another thread. 50 sessions of hbot greatly improved his pain symptoms, helped with fatigue, and normalized his SPECT / PET scans

    And later when I asked him if the scans improved...

     
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  15. Jesse2233

    Jesse2233 Senior Member

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    A patient's HBOT story from ProHealth relayed by @Wayne

     
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  16. Jesse2233

    Jesse2233 Senior Member

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    From @Mithriel

     
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  17. Murph

    Murph :)

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    I really like @Jesse2233's broad and open minded evidence gathering approach. I'm not sure I have ever observed someone so diligently work to recover their health! You're an asset to the search for treatments.

    However, somewhere between the long time frames taken to achieve remission, the high prices and the lack of plausible mechanism for it to work, my normal willingness to draw evidence from patient reports ebbs with this particular treatment.

    Anything you can do for ages and not see an improvement, while the fans tell you you just need to keep going longer, try harder and/or spend more sends me little warning signals.

    I'll willingly be corrected, but this is my gut feel.
     
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  18. Murph

    Murph :)

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    Just to argue against myself here for a moment: The parable of the alien race with the block of ice.

    They warm it up from zero kelvin to ten kelvin. nothing. 50 kelvin. still solid. 150 kelvin. They've really put a lot of energy into this thing and nothing is happening. 200 kelvin. no change. 250 kelvin. this is starting to look pointless. 260 Kelvin. Nada. this stuff is not going to turn into a liquid. maybe one last blast? they get to 270 kelvin and the bloody thing still sits there looking square and firm. It's time to stop spending good energy after bad. This is a dead end. They quit, disappointed to have not obtained a liquid, and fly off.
     
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  19. Jesse2233

    Jesse2233 Senior Member

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    Thanks for the kind words @Murph

    I've never tried HBOT, so for all I know you may be right. It's always wise to have some healthy skepticism.

    For me there are enough suggestive studies, compelling anecdotes (in a condition where such anecdotes are fairly rare), and a low enough risk profile (beyond money and time), that it's worth it for me to try. If I go through 40 sessions and it does nothing, then I know it's likely not a good modality for me. But if it gets me to a functional (working) level, and I end up buying a unit for $5k which I use everyday, then it will have certainly been worth it.
     
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  20. gettinbetter

    gettinbetter Senior Member

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    Hello All
    Exiting news
    I found an affordable HBOT company in Albany California Bay Area
    They are significantly cheaper than the other places I've called
    They are called Holistic Hyperbarics
    They use soft shelled chambers
    http://www.hh-bayarea.com/
    510-648-9496
    Talk to Alex
    If you use them please mention my name Steve from Phoenix Rising this gives me free sessions
    I am not invested in the company in any way just wanted to pass along this information for people that want to try but can't afford it
     
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