Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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

    Messages:
    1,187
    Likes:
    2,707
    On LymeNet there is a (loooooong) thread of users purchasing soft hyperbaric oxygen chambers (mHBOT) making substantial progress and in some cases full recoveries. Most (if not all) of them have hallmark symptoms of ME/CFS and some also carry it as a secondary diagnosis.

    The key difference from the HBOT reports I've read on PR and the ones on this thread are frequency and quantity of use. Some of these patients went a full year every day before seeing significant improvement. Official HBOT studies (scarce as they are) are much shorter term, encompassing only 20-60 sessions.

    There has been a lot of debate on whether Chronic Lyme and ME/CFS are the same disease, I'm not interested in relitigating that here. Instead I want to share this thread to give hope, and to see if anyone here has had a similar experience.

    One user's remarkable story:
     
    Wayne, MEMum, Hip and 9 others like this.
  2. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,187
    Likes:
    2,707
    From another user also diagnosed with CFS/ME. She's experienced quite the improvement (and also documented it on YouTube). In a nutshell she went from housebound to weight lifting, running 5k's, and working full time.

     
    MEMum, leela, helen1 and 1 other person like this.
  3. NotThisGuy

    NotThisGuy Senior Member

    Messages:
    161
    Likes:
    90
    Germany
    where to buy these things?
     
  4. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,187
    Likes:
    2,707
  5. NotThisGuy

    NotThisGuy Senior Member

    Messages:
    161
    Likes:
    90
    Germany
    any idea how much it costs?
     
  6. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,187
    Likes:
    2,707
    They're pricey, around $12k new, $6k used. Dives at a clinic are $150-200 a session

    Another route is rentals, group buys, or finding someone who already has one through a support group.

    My understanding is that used (assuming it's in good repair) can actually be better because they've already off-gassed for those who are chemically sensitive.

    Tagging @Learner1 and @Theodore as I know they are both avid HBOT users
     
    MEMum and Theodore like this.
  7. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,187
    Likes:
    2,707
    Great lecture series on HBOT

    PART 1:

    PART 2:

    PART 3:

    And a CFS/ME/Lyme patient's mHBOT recovery documented over 10 parts on YouTube

    PART 10:
     
    ErdemX and ScottTriGuy like this.
  8. SB_1108

    SB_1108 Senior Member

    Messages:
    280
    Likes:
    676
    I just purchased a soft shell mild hyperbaric oxygen chamber. I haven't used it yet so I can't comment on its effectivess. I was originally looking at the Solace model from Oxyhealth which was around $8k after shipping/taxes. But I also researched Newtowne Hyperbarics and ultimately decided to purchase their smallest unit for about $4k. I'm still setting it up and trying to figure out how it all works but hopefully I can provide some updates later.

    It will be difficult for me to differentiate any improvements from some of my other treatment protocols that I've been working on recently - stem cells, mold avoidance and multiple gut healing supplements. I'm just throwing darts at this point!
     
    Wayne, MEMum, ljimbo423 and 3 others like this.
  9. ryan31337

    ryan31337 Senior Member

    Messages:
    396
    Likes:
    883
    South East, England
    Curious to know how this compares to sitting at the bottom of a swimming pool with a tank of Nitrox :D
     
  10. voner

    voner Senior Member

    Messages:
    531
    Likes:
    790
    i would like to hear if @Butydoc has anything to say about this or any opinions. he's a M.D. and has experience with a different kind of hbot (i think).
     
    Jesse2233 likes this.
  11. NotThisGuy

    NotThisGuy Senior Member

    Messages:
    161
    Likes:
    90
    Germany
    this looks very interesting.
    If I had the money I would purchase one right away.

    edit:
    just wondering: they say in this thread you also need an oxygen mask.
    Isn't it proven that oxygen therapy makes CFS worse in the long run?
    Also it increases oxidative stress... if people feel better on antioxidants it might backfire....
    on the other hand it kills the pathogenes which lessens oxidative stress in the long run....


    we need more discussion about this and report on one's experiences
     
    Last edited: Sep 5, 2017
  12. junkcrap50

    junkcrap50 Senior Member

    Messages:
    131
    Likes:
    140
    I've had full remission from HBOT. I had done 80 dives using the professional, hard shell chambers. It was not until dive ~75 did I get full remission. I noticed benefits right away in the first 10, then sort of slowely improved or plateaued for a while, and then jumped to feeling better than I did when healthy at around 75. Massive confidence, lightening quick thinking, huge energy, etc. Full remission and feeling superb was lost when I kept doing the HBOT dives and I think I did too much of it, making me feel worse. But I still had the majority of benefits. I think if I stopped right when I was "cured" it would have lasted for quite a while.

    I recently bought a soft shell chamber to do HBOT at home more cheaply than at a clinic, but have been delayed in using it while getting it repaired. It was sort of a last resort move, thinking that HBOT was the best thing that's helped me. Its good to know that some people needed to be doing their dives for several months if not years to see improvement.
     
    Wayne, MEMum, helen1 and 2 others like this.
  13. voner

    voner Senior Member

    Messages:
    531
    Likes:
    790
    @junkcrap50,

    would you tell us what specific symptoms resolved? how long did that resolution last?
     
    MEMum likes this.
  14. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,187
    Likes:
    2,707
    @junkcrap50 yes interested in hearing more about your experience. What level of functionality were you at when you started?
     
    MEMum likes this.
  15. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,187
    Likes:
    2,707
    Another recovered severe patient

     
    ErdemX likes this.
  16. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,187
    Likes:
    2,707
    You don't need an oxygen mask although some people do supplement oxygen while undergoing HBOT. Most people on that thread did not.

    I can't think of a study where oxygen therapy has been shown to make CFS worse. I do recall Dr Paul Cheney mentioning concerns over oxidative stress. My understanding is that in HBOT there is a paradoxical phenomenon where the mild oxidative stress causes the body to endogenously produce increased antioxidants such as glutathione.
     
    MEMum and helen1 like this.
  17. NotThisGuy

    NotThisGuy Senior Member

    Messages:
    161
    Likes:
    90
    Germany
    that guy who recovered in this thread you posted said he did supplement oxygen.

    I think cheney was it who said something in the blood gets used up with oxygen (i think it was something that binds oxygen to blood cells) and so in the long run it makes cfs worse.
     
    Jesse2233 likes this.
  18. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,187
    Likes:
    2,707
    I missed that, thanks for catching

    Hmm would be interested to know what that was, I've not heard that
     
  19. NotThisGuy

    NotThisGuy Senior Member

    Messages:
    161
    Likes:
    90
    Germany
    it was 2,3-Bisphosphoglycerate.
     
    Jesse2233 likes this.
  20. Learner1

    Learner1 Professional Patient

    Messages:
    727
    Likes:
    1,003
    Pacific Northwest
    To answer some of the questions...

    - the prices you quoted are about right. It's possible to rent by the month. A Russian doctor near me has a clinic with 4 chambers, and I pay about $40 a session. Found them through GroupOn...

    - the soft sided 1.3 atmosphere is fine... More pressure is not necessarily better. The mask helps get the oxygen better into you. The one I have is simple, fits over my nose and mouth, elastic around back of head and little inflatable bag in front, like on an airplane.

    - it has helped combat the infections I have, and gets more oxygen into my system. Stopping for awhile made my symptoms and titers worse.

    - Sick people can have hypoxia. This helps. Best to exercise and get nutrients before a dive, as the dive helps things circulate better throughout the body.

    - oxidative stress can happen. Its a balance. More glutathione can be produced.My doctor had me compensate for low antioxidants by increasing ALA, vit A/C/E, and dark berries.

    I sleep really well in it, too and feel rested (for once) when I get out. This study says HBOT decreased symptoms:

    https://www.ncbi.nlm.nih.gov/pubmed/23682549

    There are other valid oxygen therapies, too. I've done UVBI, and have talked to one of Dr. Rowan's serious Lyme patients who did 10 pass ozone and swears its the only thing that's helped him. A friend with chronic EBV did 10 pass ozone, too, and has had a lot more energy since - with 10 pass you get more oxygen faster.

    Attached is a paper on UVBI and one on ozone and impact on sphingolipids.
     

    Attached Files:

    Last edited: Sep 6, 2017

See more popular forum discussions.

Share This Page