Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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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. Jesse2233

    Jesse2233 Senior Member

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    Another successful Lymenet user
     
  2. Jesse2233

    Jesse2233 Senior Member

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    Nice find Steve! Good luck and let us know how you do!
     
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  3. Jesse2233

    Jesse2233 Senior Member

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    From a ME/CFS patient on MyPatientMatch

    Later he answers a question with more details

    Adds more later
     
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  4. Jesse2233

    Jesse2233 Senior Member

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    Another ME/CFS + Lyme patient from MyPatientMatch

     
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  5. Hip

    Hip Senior Member

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    Jesse2233 likes this.
  6. ryan31337

    ryan31337 Senior Member

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    I've heard some people say developing O2 toxicity is more of a risk underwater vs dry dive...I have no idea if there is any evidence behind those claims or why that would be the case though.

    Thinking about it, doesn't a closed-loop rebreather maintain a constant pO2 of ~1.3. Would cost about the same as a soft-shell chamber and be a lot more fun in the swimming pool :D
     
  7. Jesse2233

    Jesse2233 Senior Member

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    Another HBOT user from Facebook
    more from the same person

     
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  8. NotThisGuy

    NotThisGuy Senior Member

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    So I've calle my local HBOT center.
    205€ per session.
    The guy said I need 30 sessions for CFS and chronic Lyme and that they only had improvement that lasted years.
    I know its hard to trust someone who works there and they for sure didn't called the patients who just didn't come back after few treatments and stopped the therapy.
    But anyway it sounds more promising than anything else so far.
    Well..... how to afford this now?
     
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  9. gettinbetter

    gettinbetter Senior Member

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    Can you rent a machine?
     
  10. aaron_c

    aaron_c Senior Member

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    If you are planning on doing at least two months of daily dives I think it is cheaper to buy one and then sell it if it doesn't work. The model my naturopath just bought appears to retail for $4130...at least for now--I'm not sure how long the "sale" will last or if it's a permanent discount. $4130/265=15.6, so after sixteen dives you might as well have bought the thing yourself. At least one hyperbaric chamber on ebay had a 10- or 15-day money-back guarantee, meaning that at the worst you could order it, do 10-15 dives, then send it back and only pay for shipping. I'm looking at the USA ebay, I'm not sure what's available in Germany but mHBOT (soft-walled) should ship relatively easily.

    As for the potential resale of mHBOT: I don't see any used mHBOTs on ebay right now, but maybe that is because they get snatched up? I see 12-24 people watching HBOTs and mHBOTs with an "or best offer" option, so I think people are interested.
     
    Last edited: Sep 11, 2017
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  11. gettinbetter

    gettinbetter Senior Member

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    Buy one and charge a small fee for others to use it?
     
  12. NotThisGuy

    NotThisGuy Senior Member

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    the question is if the machines for home are really that safe?
    Hip posted some concerns by the FDA and that's pretty much what the guy on the phone from the HBOT center told me aswell.
     
  13. aaron_c

    aaron_c Senior Member

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    Hmm...So I took another look at their website. They may be just who they say they are but why are they anonymous? That's a big red flag for me. Of course people who report concerns to a watchdog organization should be anonymous. But nothing else about the watchdog group should be anonymous. If they are truly a watchdog organization then transparency should be their watchword.

    In addition, they link to an FDA report that basically says HBOT hasn't been cleared for use with autism and links it to other questionable treatments for autism. Maybe they are just funded by conservative doctors and normal (HBOT not mHBOT) companies? Otherwise I don't know why they would link to a report that says "don't use HBOT because the FDA says it might not work.

    Finally, the story of someone dying: It was a child who asphyxiated because the hose pumping air into the tank became detached and the parents left their kid unattended for a few hours. In order to sue, the plaintiffs contended that they did not know this could happen. Fair enough, but we now know this might happen, and we are all capable of getting out of the HBOT tank if the hose pumping air in stops working. And as far as I can tell the plaintiffs lost their court case, which is probably why the above website said "regardless of fault."

    So I'm a little confused and suspicious. Is it an industry hit-job? Are HBOT manufacturers concerned with competition from mHBOT? Is the anonymity used to hide the Sparks family who lost their court case but still want to see Oxyhealth pay for the death of their son (maybe not if this group was around ten years ago)? Or is this another battleground in the conventional vs alternative medicine arena, with the website authors being of the opinion that no one should ever use any treatment that has not been thoroughly proven to be effective (and subsequently approved by the requisite government bodies), even when that means that no effective treatments are available?
     
    Last edited: Sep 11, 2017
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  14. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    The following link shows recent COMPLETED eBay offers, i.e., they were either bought, bid on, or the listing expired. A GREEN price means the item was bought or bid on. A black price means the listing expired. You have to click on the listings to see if they are used are new (there were a few used ones). The listings are shown from lowest price to highest.
    https://www.ebay.com/sch/i.html?_sa...15&_clu=2&_fcid=1&_localstpos&gbr=1&_zpclkd=1
     
    Last edited: Sep 11, 2017
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  15. aaron_c

    aaron_c Senior Member

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    Thanks @CFS_for_19_years. So just looking over this it seems like the smaller (and cheaper) chambers were more popular. The used ones that were sold lost...maybe $2000 off the value of new, comparably sized tanks. It might be more for the very expensive versions that don't seem to get sold much, and it might be a little less for the smallest chambers--when a seller accepts a "best offer" then you can only the seller's asking price (that didn't get met).

    It seems like much of the risk in buying and then reselling mHBOT is that the price of tanks might go down in the mean time, pushing your resale value lower.

    Still, I see that a tiny used tank went for $2024, which is not bad at all (for the buyer).
     
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  16. Jesse2233

    Jesse2233 Senior Member

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    An interesting HBOT autoimmune recovery story of a woman and her children. CFS is mentioned as one of the diagnoses received by her children.

    Note that this woman has a financial stake in HBOT
     
    Last edited: Sep 11, 2017
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  17. Jesse2233

    Jesse2233 Senior Member

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    from 2precious on ProHealth, assuming their diagnosis was chemically induced CFS
     
    Last edited: Sep 12, 2017
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  18. Jesse2233

    Jesse2233 Senior Member

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    I have reached out to Dr Naviaux asking his thoughts on HBOT and mitochondrial function. I will report back if he replies
     
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  19. Mithriel

    Mithriel Senior Member

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    I had never really thought about how HbOT works and just found out recently.

    Oxygen is carried round the body by red blood cells and that is what doctors look for and want to keep to a certain level. However some is carried in the interstitial fluid round the cells, but is considered insignificant so is ignored. Dr James' reasoning was that this oxygen becomes important when the small blood vessels are damaged so haemoglobin can't reach where oxygen is needed but the fluid still bathes the area. The HbOT increases the amount of oxygen in the fluid so that it is available in these damaged areas.

    It is interesting that mitichondrial studies have shown we have more mitochondria in the interstitial fluid than controls do.

    It is one of these areas of medicine where doctors are not taught about certain things that may turn out to be important. Dr James gets very frustrated that the profession is happy to put up drips to get fluids and minerals into the body but won't do anything to help oxygen get to anoxic areas.
     
    Last edited: Sep 16, 2017
  20. NelliePledge

    NelliePledge plodder

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    yes there's one about 5 miles from me and Ive heard from a woman in the local ME group on facebook that she's had a lot of benefit from it going from severe to moderate/mild ME in the last year. you join the centre which is a charity then the sessions are £12 a go so Ive decided to take the plunge (sorry couldnt help myself):rolleyes::whistle::redface:
    got an appointment next week
     
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