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    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.

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  1. U

    Anyone tried Xifaxan (Rifaximin) for SIBO?

    2800,-:eek::eek::eek: I thought it was a pretty expensive type of antibiotic, but it was 100-200 euro here, for a month. It did help for my SIBO, although flagyl helps better for me. I get my microbiome tested and treat accordingly with whatever overgrowth there is.
  2. U

    High bacteroides good or bad?

    I had the same overgrowth as you do. High bacteroides and low bifido. Only thing I can say is, I got treated, last time I checked my bacteroides were <10 and I felt better than before. Other inflammation markers went down (prostaglandines) and CD14 (indirect marker for LPS) went down as well. I...
  3. U

    Cortisol brought me back to life.

    How interesting that it made such a difference! I can imagine 5mg prednisone does have a better antiinflammatory mechanism than hydrocort does.
  4. U

    Cortisol brought me back to life.

    How wonderful that you found a doctor willing to prescribe! Can I ask why you would use 5 mg prednison instead of 20 mg hydrocort? I take 25mg hydrocort myself (and with advise of thingsvarious) spread it during the day to keep the negative effects to a minimum.
  5. U

    Hypothesis: Mechanisms That Prevent Recovery in Prolonged ICU Patients Also Underlie Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

    I wish I had your trust in standard medical procedures :D I know that the treatment for panhypopitarism is far from optimal and the treatment of hypothyroidism is pretty bad actually. (see: stop the thyroidmadness website). Lots op people getting stuck with horrible symptoms. So we know lots...
  6. U

    Hypothesis: Mechanisms That Prevent Recovery in Prolonged ICU Patients Also Underlie Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

    This reminds me a lot of the topic of @thingsvarious :D I had an extreme yes-feeling with this paper :D Really hope they will take this further and find the funding to (finally) do a real in-depth study on this topic.
  7. U

    Each hormone deficiency is associated with a distinct kind of fatigue. I had them all.

    I feel there is not much to gain from thinking in very strict lines about ME/CFS. I don't believe when we finally figured it out, ME/CFS will be just one disease. There will also be a difference in root problem and side problems. I have been diagnosed ME (ICC criteria), but low dose cortisol...
  8. U

    Thermoregulation and body temperature

    Yes, I shiver, but only when I was still experiencing real PEM (flu like feeling for days) and I was still overdoing it regularly. Being extremely cold (with ice cold hands and blue lips) is pretty much one of the first symptoms when I overdo it, I still have that now.
  9. U

    My treatment for Borrelia miyamotoi

    Yes, so I still wanted to do a post about my complete treatment. In short, gut and immune treatment got me from, i think, in between moderate and severe? On my worst, I got out once a week and had to recuperate for 5/6 days after. Mostly housebound, with lost of sleep and resting in bed, but not...
  10. U

    My treatment for Borrelia miyamotoi

    I think they are testing with PCR on the phages. Because there are 1000 phages for one bacteria, the chance of getting a positive PCR is a lot bigger, than when you would do PCR on borrelia itself. Also because the borellia bacteria is in the tissue and not in the blood. The phages are...
  11. U

    I replace ALL my hormones. This brought me back to life. But is it sustainable for decades?

    I take 25 mg of hydrocortison, because my cortisol levels were very low (I tested this in saliva on 5 different points in the day). It helps a lot, but I am also worried about the effect long term. How did you figure out your dose? Did you test all the hormones? Where they all low or...
  12. U

    List of ME/CFS Recovery and Improvement Stories

    Can you add me? I recovered from moderate to mild two times from the meirleir protocol. Combination of antibiotics for Sibo, LDN, b12, gammanorm (scIg), mesalazine. Strict pacing was also part of it.
  13. U

    Documentary: Undercover in German Lyme Clinics

    They are finding B. Miyamotoi in 70% of people they tested, mostly in people who have long standing symptoms, with long history of negative tests. Of course, that's a very skewed population. @ msf: I completely agree! I'm have become more trusting of KDM over the years, because a lot of what...
  14. U

    Post Lyme Treatment with KDM

    MCAS, yes. Mycotoxins, no. I have been on disufiram for 5 months now, went very slow and had to go back three times, because I couldn’t handle it. I have been on my full dose now for 1,5 months and I’m doing very well now.
  15. U

    Post Lyme Treatment with KDM

    Great to hear! I have the same thing, treated my Sibo and inflammation, that made it a lot better, but the disulfiram Is making a very big difference now. I only hope the effect will stay once I stop the medication.
  16. U

    Post Lyme Treatment with KDM

    Good to hear! I am doing very well on disulfiram as well.
  17. U

    Borrelia miyamotoi anyone?

    This phage test is a very new test. There are youtube video’s of Louis Tulieres who invented the test, on the website of red labs. That gives more information about how it works. Of course this test is not validated yet and very new, but I have a lot of trust in this test. It’s a PCR test, so...
  18. U

    Post-sex exhaustion

    For me, I think it’s the normal PEM effect that comes from exertion? Have you tried to have an orgasm without all the exertion, do you still have PEM afterwards? For me, the solution was to let my partner do all the work ;)
  19. U

    Is neural/limbic retraining (DNRS) a treatment for ME/CFS or not?

    I didn’t have any sensitivities other than exercise intolerance. Tried gupta for a year, didn’t work off course. Looking back, it’s easy to say it’s a scam. It’s pretty ridiculous actually:lol: but at that time I was so willing to believe there was an easy way out of this. I think everyone has...
  20. U

    ME/CFS for 18 years, recently diagnosed with D-Lactic acidosis as cause of symptoms and illness.

    i'm sorry, it's not Eliava, but another centre: http://www.phagetherapycenter.com/pii/PatientServlet?command=static_cfs
  21. U

    ME/CFS for 18 years, recently diagnosed with D-Lactic acidosis as cause of symptoms and illness.

    If you are sure that a specific kind of bacteria is producing your symptoms and you are getting resistant to antibiotics, maybe you could have a look at bacteriophage therapy. There is a centre in Georgie, it's called Eliava institute. They are offering a therapy with bacteriophages. They even...
  22. U

    Imaging robust microglial activation after lipopolysaccharide administration in humans with PET.

    The result for LPS is pretty good, there is a pretty big difference between healthy people and me/cfs people. It doesn’t separate the groups perfectly, but it’s a very significant outcome nonetheless
  23. U

    Who to contact to get an FMT clinical trial with high quality donors?

    I've read an article that in one study for crohn's disease, they found out that most people who got a remission, got the FMT from the same single donor! They should definitely test that in all studies in FMT and keep record of which donor helped which disease, because it could well be that...
  24. U

    Severe post Lyme ME/CFS patient achieves full remission after Taymount FMT

    https://www.google.nl/amp/s/www.boston25news.com/amp/news/for-chronic-lyme-disease-patients-frustration-but-new-hope/803763936 There are more stories like this
  25. U

    FMT - Worth trying?

    I want to try it too, but I’m not severe. Treatment for my gut has done a lot for me already, I’m just scared to undo al that again. Did you have any sibo/bowel related problems Mattie? I read you were diagnosed with Cervical problems now? So that would be logical that FMT doesn’t work then?
  26. U

    Anyone tried Limbic Retraining: Dynamic Neural Retraining System?

    That’s just nonsense. I would love to get better without any pills. I did gupta for about a year. I spend 4 years basically thinking I had a burn out and totally tried to believe in the “stress theory”. I don’t anymore, because it didn't do anything for me. I just want a remedy that works!! I...
  27. U

    ME/CFS for 18 years, recently diagnosed with D-Lactic acidosis as cause of symptoms and illness.

    Is there any experience with a fecal transplantation in people with d-lactic acidose?
  28. U

    My experience with KDM and Lyme

    To be honest, not much of what you are saying makes a lot of sense to me. I'm sorry. PEM is post-exertional malaise, the hallmark of ME. I get (mostly small spectrum) antibiotics for my gut, I was not diagnosed with lyme.
  29. U

    My experience with KDM and Lyme

    Just to be clear, I don't know if I would do the lyme treatment. I probably wouldn't. Maybe depends on how clear it is that I got lyme, I don't know. I only know that it's really hard to know for sure that you have got it. Plus that a lot of people that did have it, had to have antibiotics for...
  30. U

    My experience with KDM and Lyme

    I know a few people who are treated for lyme in Nijmegen now. They started testing for co-infections and they are getting a lot of iv-antibiotics. Iv-antibiotics are just as harmful as oral ones. It depends more on the kind of antibiotics (small spectrum vs broad spectrum). What kind of test...