• 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, 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

    Improvement of immune dysregulation in individuals with long COVID at 24-months following SARS-CoV-2 infection

    I'm part of the world and I am doing something about it. No one's helping me.
  2. MaximilianKohler

    NEWS: Chairman Bernie Sanders Releases Long COVID Moonshot Legislative Proposal

    This is a nice thought, but it's going into "general research". If you're expecting a cure to come of this you're going to be extremely disappointed... after waiting another decade or two. Instead, you may want to educate yourself on a currently-existing treatment, then get involved, and...
  3. MaximilianKohler

    Results of my experiments placing various gut health supplements in special colon-targeted enteric capsules

    Since I got quoted a few times, I decided to reply here https://forums.phoenixrising.me/threads/focused-on-the-gut-microbiome-fmts.52788/post-2458081 so as not to pollute this thread further.
  4. MaximilianKohler

    Results of my experiments placing various gut health supplements in special colon-targeted enteric capsules

    The reply I received demonstrated the phenomenon I described perfectly. I give up. I have discussed the reasons for this at length, and could share educational links, as I did previously, but it appears to be a complete waste of time since the vast majority of people continue to demonstrate a...
  5. MaximilianKohler

    Results of my experiments placing various gut health supplements in special colon-targeted enteric capsules

    There seem to be a few more misunderstandings in Hip's reply to me. And overall I feel like it largely ignored my points. To clarify, there is some debate on whether viruses are “alive" or classified as "microorganisms”, but they are firmly considered to be part of the “gut microbiome”. So...
  6. MaximilianKohler

    Results of my experiments placing various gut health supplements in special colon-targeted enteric capsules

    To me, it seems more like the adverse effects stem from bypassing the required digestive process. Of course there is. Your health is poor and thus you have a dysbiotic gut microbiome. It's strange to me that this seems novel to you. You've been discussing the gut microbiome and FMT for many...
  7. 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.
  8. 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...
  9. 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...
  10. 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.
  11. 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?
  12. 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.
  13. 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/
  14. 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...
  15. 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.
  16. MaximilianKohler

    Food not digesting tablets stuck

    IMO, FMT is the only real solution to problems like that. https://humanmicrobiome.info/faq/
  17. 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.
  18. MaximilianKohler

    Galacto-oligosaccharides and candida?

    This may help you: https://humanmicrobiome.info/candida/
  19. 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...
  20. MaximilianKohler

    Healed ME in a year

  21. 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/
  22. 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.
  23. 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...
  24. 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/
  25. MaximilianKohler

    Bad bloatedness and nausea

    Elimination diet, FMT. https://humanmicrobiome.info/faq/
  26. 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.
  27. 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...
  28. 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.
  29. MaximilianKohler

    Success from Probiotics

    It's highly experimental. https://humanmicrobiome.info/probiotic-guide
  30. 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.