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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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Search results

  1. L

    imminent trip to see KDM - question re money

    The large costs are the specialized tests from Redlabs and a few others, you will get a bill that can be paid by bank transfer or card payment (there is a form for card payment on the website of Redlabs). Most common tests that you may get ”at home” are very cheap in comparison. I checked the...
  2. L

    imminent trip to see KDM - question re money

    The large costs are the specialized tests from Redlabs and a few others, you will get a bill that can be paid by bank transfer or card payment (there is a form for card payment on the website of Redlabs). Most common tests that you may get ”at home” are very cheap in comparison. I checked the...
  3. L

    My test results and assessment

    I don't know it d-lactate has any specific relevance to the immune disturbances or the infections. It should at least be a marker of unhealthy gut flora, and d-lactate may have quite a powerful negative effect on CNS functions controlling homeostatic mechanisms. I think he described it as...
  4. L

    My trip to see Professor De Meirleir (long post)

    Atleteninfuus = athlete infusion. I don't know what it is, sounds like some kind of infusion with nutrients helping the cells to restore their energy balance, which might be a good pick both for athletes and for ME patients.
  5. L

    Diagnosed with ME by KDM?

    Is ME anything other than a syndrome of dysfunction that i e may (in many or most cases) relate to chronic infections like borrelia? I mean, ME is a syndrome with unclear etiology, and maybe the infections are the only culprit, maybe there needs to be other factors or there would be no ME? Even...
  6. L

    Food intolerance test

    I only had a reaction to eggs in the test (3 years ago), and it definitely was good cutting them out. I did a relatively strict low carb diet for periods of time about 7-10 years ago, which was very good for me, and I ate a lot of eggs during those periods without any reaction. But about 7 years...
  7. L

    KDM Results

    Hi all! It's not so strange that the LTT tests aren't referred to as serology since serology is testing on pure serum (without the blood cells etc), i e antibody panels, and LTT is about testing activity in lymphocytes.
  8. L

    Private group or private forum? let me know what you think.

    Sounds like a good idea if it may be kept private. I keep forgetting to check the group...
  9. L

    My trip to see Professor De Meirleir (long post)

    Thank you for sharing, I think we learn a lot from sharing our experiences. I hope this is the right track for you, and that there are big improvements in your health to come.
  10. L

    Introductions

    Justy – yes, positive for borrelia and bartonella. And a few past infections that might have been active when I started the treatment but are under control now. KDM thinks the bartonella has been under control for long now, it's the borrelia that's the culprit. I still have high elastase and...
  11. L

    Introductions

    Hi everyone, I was a member of this group for a while in the summer, but has been away from PR for a while, now I'm back. I'm almost three years into treatment, and have had a great improvement, it's slow but moving forward steadily. At the start I was at about 60 % physical ability and 40-50 %...
  12. L

    Pre-Treatments

    How's it been going since you wrote? What are you on? I haven't had any positive effects in the short run during the treatment, most things are a bit rough at the start, not just the immune system stuff and the anti-infection stuff – it also seems like the homeostatic systems in the body get a...
  13. L

    Expectations

    It's great you are getting into treatment after less than two years – it's probably a very good chance of getting at least much better in a year or two, or even fully recovered. The chances seem to diminish rapidly as the years go by and treatment periods get much longer.There is no cure for ME...
  14. L

    Urine neurotoxin test

    Hi Justy, Maybe you've already read up on this, but the test is supposed to indicate Th1/Th2-balance indirectly by measuring metabolites related to hydrogen sulfide. http://www.academicjournals.org/article/article1379414498_Roelant and De Meirleir.pdf I think it gives an indication of some...
  15. L

    V. Lombardi, et al, new poster: HERV in pDC as biomarkers & TLR defects

    Thank you all for a very interesting discussion! I've been wondering what Lombardi and De Meirleir are up to after the study last year, will be interesting to read the article!De Meirleir has started testing Yersinia more, as somebody noted in the thread, since a lot of the patients seem to have...
  16. L

    My test results from KDM

    In the future I think watching for autoantibodies will be one way to screen for disease processes to find them long before they have progressed long enough for us to get ill. It seems like we tolerate a certain amount of ”load” on our immunological and endocrinal systems before they tend to get...
  17. L

    Welcome all new group members

    Hi, I'm a new member of the group. My first appointment with KDM was January 2012, and I'm now 26 months into treatment. I live in the western part of Sweden, and go by train for 3,5 hours to Oslo for the appointments. I have been getting better slowly but steadily, will tell you more about...
  18. L

    My test results from KDM

    @Helen – as I recall this one was good as an overview: In Defense of Self: How the Immune System Really Works William R. Clark
  19. L

    My trip to see Professor De Meirleir (long post)

    To be able to win the fight against borrelia and the other infections you need to get the immune system functional enough to be able to control them. There are certain immune weaknesses and disturbances that are specific to the type of chronic infections seen in ME which needs to be treated. The...
  20. L

    My test results from KDM

    I think a (relatively) low positive ANA test is relatively common in ME patients. It is one of many immune markers that KDM interprets holistically. If you have read the research by Morris and Maes it's obvious that ME patients have a wide range of ”mild” autoimmune reactions tothings like...
  21. L

    My trip to see Professor De Meirleir (long post)

    Regarding the LTT test I think it is common for ME patients to test negative or very weakly positive before treatment has started even if the infection actually is there. There are lots of other indicators that points to borrelia if it's there, and like the rising values in the antibody tests...
  22. L

    Important Discovery Exposes Autoimmune Nature of ME/CFS - HERVs Implicated

    Thank you, Joel, for a very well written article! As a comment to some of the comments: From what I know from different sources De Meirleir (I'm a patient of his) doesn't think this autoimmune reaction is the cause of ME, rather one of the later consequences of the disease process, the cause...
  23. L

    Dr. DeMeirleir speaking Jan 28/13

    I have never had any GI symptoms and have always had a ”steel stomach” (don't know if that's an expression i english, but it is in swedish!). Yet my fecal analysis showed a large overgrowth of prevotella, too little of lactobacillus and almost no bifidobacteria (which some call THE gut bacteria...
  24. L

    Dr. DeMeirleir speaking Jan 28/13

    KDM's model for it, as I've learned from other presentations and some bits that he has given to me at the consultations, is that there are several predisposing factors that leads to the vulnerability for certain infections. Some are genetic, at my last consultation he talked about a genetically...
  25. L

    Dr. DeMeirleir speaking Jan 28/13

    I'm excited about this, and I hope that it won't be a month or so before the summary is posted (I suppose they would have told if it wasn't due in a few days or so?). The recording would be nice to see soon too of course, but at least some info on the main points. What rumours (and KDM's...