• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. MaximilianKohler

    Patient initiative: Screening half a million stool donor applicants to find FMT (Fecal Microbiota Transplant) super-donors

    This Expanded Access program https://www.fda.gov/news-events/expanded-access/expanded-access-information-patients that allows patients to try non-licensed drugs seems like it should make it possible for this project to continue. @Hip posted about it here.
  2. MaximilianKohler

    Expanded Access program allows patients to try non-licensed drugs

    Thanks for bringing this up! I had heard about this before but kind of forgot about it. It seems highly relevant to the FDA warning I got in regards to FMT...
  3. MaximilianKohler

    Has anyone gotten over CFS and intolerance to light and sound

    Yes. I did with FMT from a good enough donor. https://forum.humanmicrobiome.info/threads/my-detailed-experiences-lessons-from-13-different-fmt-donors-jun-2018.53/ It's completely dependent on gut microbiome status, and my understanding is that it's largely due to intestinal permeability. If you...
  4. MaximilianKohler

    Long Term Sufferers = Low Stomach Acid/SIBO/IMO?

    I would recommend reading this page about "SIBO" https://humanmicrobiome.info/sibo. I think the use of the term denotes an incorrect understanding of the gut microbiome.
  5. MaximilianKohler

    Patient initiative: Screening half a million stool donor applicants to find FMT (Fecal Microbiota Transplant) super-donors

    I just posted two new blogs in response to the FDA warning letter: The FDA and FMT regulation. High-quality stool donors are more rare than one in a million? AI, funding, and potential. Any ideas about what could be done? Perhaps a letter-writing/petition campaign to the FDA could be organized?
  6. MaximilianKohler

    High Heart rate after eating, what am I doing wrong?

    This used to happen to me after taking an antibiotic that wrecked my bile acid metabolism. The main causes were protein & fat. What is your bristol stool type like? I solved this with Cholestyramine and then FMT.
  7. MaximilianKohler

    Patient initiative: Screening half a million stool donor applicants to find FMT (Fecal Microbiota Transplant) super-donors

    The FDA sent me a warning letter: https://forum.humanmicrobiome.info/threads/is-human-microbes-getting-shut-down.261/
  8. MaximilianKohler

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    I don't think that's an accurate view. You need to think of the gut microbiome as a whole ecosystem. Antibiotics do long-term damage that accumulates over generations https://humanmicrobiome.info/antibiotics/#harms-of-antibiotics. This ecosystem impacts and regulates the entire body...
  9. MaximilianKohler

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    That would explain why anything that is not "fixing gut dysbiosis" is only addressing symptoms, and thus is usually only temporary.
  10. MaximilianKohler

    Food not digesting tablets stuck

    IMO, FMT is the only real solution to problems like that. https://humanmicrobiome.info/faq/
  11. MaximilianKohler

    Galacto-oligosaccharides and candida?

    There's a lot more there than a few probiotics :) Probiotics are very limited and certainly aren't a solution for most people. I don't have candida but I also benefited greatly from S. boulardii + reuteri at one point.
  12. MaximilianKohler

    Galacto-oligosaccharides and candida?

    This may help you: https://humanmicrobiome.info/candida/
  13. MaximilianKohler

    Eating sweets exhausts me

    It depends on your individual gut microbes https://humanmicrobiome.info/diet. After an antibiotic killed off my bile acid metabolism microbes, I had problems with high-fat and protein foods, and did best on high carb - IE: lots of sweet fruit. After doing FMT from a specific donor that was...
  14. MaximilianKohler

    Treatment for Blastocystis in 2024

    Agree with Seadragon. Likely not a good idea to attempt to eradicate https://forum.humanmicrobiome.info/threads/blastocystis-is-it-a-pathogen-should-we-eradicate-it-if-so-how-does-it.145/
  15. MaximilianKohler

    Links to latest NIH ME/CFS conference, December 2023

    If you take notes while watching the videos and post the notes here I'd read them.
  16. MaximilianKohler

    Gut practitioner

    I would not trust or recommend any "gut practitioner". I've been following the microbiome research closely for the past decade and have been very unimpressed with virtually every "gut practitioner", including some doctors who are advertised as top world experts yet give out harmful...
  17. MaximilianKohler

    Bad bloatedness and nausea

    High-quality donors are extremely rare. https://forum.humanmicrobiome.info/threads/donor-quality-and-stool-type-hypothesis-for-fmt-fecal-microbiota-trans.142/ Cost varies greatly depending on where you get it. https://humanmicrobiome.info/where-to-get-fmt/
  18. MaximilianKohler

    Bad bloatedness and nausea

    Elimination diet, FMT. https://humanmicrobiome.info/faq/
  19. MaximilianKohler

    Success from Probiotics

    Per the guide I linked earlier, most come from environmental sources like fermented foods. A smaller amount come from humans. I wouldn't recommend that https://maximiliankohler.medium.com/do-not-eat-dirt-63b5d04bf4ca It doesn't seem to be a significant amount.
  20. MaximilianKohler

    Success from Probiotics

    I've done FMTs from 13+ different donors and very few of them were highly effective. I was making FMT available for extremely low prices via humanmicrobes.org, but I was unable to find good enough donors, so I increased the prices & donor payouts, and that resulted in around a million donor...
  21. MaximilianKohler

    Success from Probiotics

    For most of that, there is no such thing. But the link does have specific probiotics that are supported for certain conditions like IBS-D for example.
  22. MaximilianKohler

    Success from Probiotics

    It's highly experimental. https://humanmicrobiome.info/probiotic-guide
  23. MaximilianKohler

    POLL: Have Antibiotics Helped Your ME/CFS Symptoms?

    Needs an option for "temporarily". Antibiotics can have the effect of making you dependent on them to do the job of the microbes they killed off via collateral damage.
  24. MaximilianKohler

    SIBO treatment resource guide

    I've been following the microbiome research very closely for over a decade and put together this resource for SIBO: https://humanmicrobiome.info/sibo. There is so much misinformation about SIBO that is resulting in people getting worse while making drug companies richer. And it prevents...
  25. MaximilianKohler

    SIBO treatment

    Yep. Antibiotics are rarely the right solution, and the longstanding practice of using them to continually kill things off has likely played a major role the chronic disease crisis. The gut microbiome is an extremely complex ecosystem that can't be fixed by continually killing things off...
  26. MaximilianKohler

    SIBO tests validity

    More info on the questionable nature of SIBO that extends beyond the poor tests for it: https://humanmicrobiome.info/sibo/
  27. MaximilianKohler

    Anyone got a good constipation remedy?

    There's a bunch here https://www.ibsgroup.org/threads/the-great-list-of-remedies.152106. Each person would just have to see what works best for them.
  28. MaximilianKohler

    SIBO, Cholestyramine, Bile Acids And a Nervous System Gone Haywire

    Interesting to see people having bad side effects from Colestyramine. I failed for years to get a doctor to give it to me, and it worked quite well for my IBS-D. Eventually I found a good enough stool donor for FMT that resolved my need for it by restoring the microbes required for bile acid...
  29. MaximilianKohler

    Poll: Small intestinal bacterial overgrowth (SIBO)

    Important reading re "SIBO" that tries to clear up widespread misinformation around it: https://humanmicrobiome.info/sibo/