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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. dga5000

    IV Clinic for Lyme Treatment in London

    I am a patient of KDM and also had my treatment at this clinic in London. In fact on many occasions I was sat next to yabeeb! Similar to her I found it much cheaper than living in Brussels for 3 months. The clinic were very flexible for timings of treatment and are now offering testing for lyme...
  2. dga5000

    Help with MSA Gut Microbiota Results!

    Sorry Thinktank I didn't answer one of your questions. I'm not a vegetarian. I have been avoiding simple sugars and carbs for several months now though.
  3. dga5000

    Help with MSA Gut Microbiota Results!

    Thanks Thinktank. Prostaglandine E2: 90.04 (normal range 0.7 - 6.5) My d-lactate and l-lactate were also signficantly raised.
  4. dga5000

    Help with MSA Gut Microbiota Results!

  5. dga5000

    Help with MSA Gut Microbiota Results!

    Hi everyone. I just received my Gut Microbiota results from MSA. They mean little to me and wondered if anyone could shed some light on what they mean. You can view the two pages of results here:
  6. dga5000

    Butyrate

    Thanks Justy. I contacted the clinic in the end. I don't think people are getting my postings to this group for some reason still. I've tried unwatching but to no avail. I
  7. dga5000

    Butyrate

    I have been recommended the supplement butyrate 50mg buy KDM. Has anyone else managed to sourse it in the UK? Dan
  8. dga5000

    Results for Lyme...

    The MM test was done by GIGA Sequencing at the University of Liege.
  9. dga5000

    Results for Lyme...

    Some more info about Midichloria Mitochondrii Discovery A couple of years ago, Australian postdoc Nate Lo was working at the University of Milan, looking for human pathogens in the tick species Ixodes ricinus, the main vector for Lyme disease. It was all routine until the day his PCR screening...
  10. dga5000

    D-Lactic Acidosis in CFS

    I'm an ME / CFS patient who has just tested positive for D-Lactate Acidosis. I'm waiting (and may be waiting for some time) for an explanation from my consultant. Does anyone know anything about this?
  11. dga5000

    New Test Results

    No worries Justy. Got some feedback a bit of from another place. I've no idea what SIBO is. Hopefully it won't be long till I get my letter from KDM explaining what's going ok.
  12. dga5000

    Results for Lyme...

    Thanks so much Ema. Really useful.
  13. dga5000

    Results for Lyme...

    Any one else tested positive for Midichloria mitochondrii?
  14. dga5000

    Results for Lyme...

    Hi Daffodil. I've had LTT ELISPOT for Borrelia and it came back negative. I've now had more than 20 tests for lyme over three rounds of testing, covering differing varieties each time - all negative. Which makes it strange that I've tested positive for Midichloria mitochonardrii.
  15. dga5000

    Results for Lyme...

    Just received my results back.. It would seem I tested negative for all the classic lyme disease tests including the SPOT test. I have however tested positive for the following: Midichloria mitochondrii - Positive D-lactate 4.74 (0.0 - 1.6) Has anyone else tested positive for these or know...
  16. dga5000

    New Test Results

    Hi everyone. Just received my results back from Redlabs. It would seem I tested negative for the classic lyme disease tests including the SPOT test. I have however tested positive for the following: Midichloria mitochondrii - Positive D-lactate 4.74 (0.0 - 1.6) Has anyone else tested positive...
  17. dga5000

    Treated for possible lyme

    @msf Thanks for the explanation of IgG and IgF. Makes complete sense.
  18. dga5000

    Treated for possible lyme

    MSF - thanks for your post. It really is great to hear from people in a similar position to you. My Yersinia results were positive for IgG but negative for IgA. If you could enlighten me on the difference between the two that would be great! I'm sorry to hear you are coming up to your one year...
  19. dga5000

    Treated for possible lyme

    Thanks so much for your post. It really was very enlightening. With my somewhat tired brain I'm not going to pretend I could take it all in! Having done a bit more research it's clear that my IL-8s has not always been high through Redlabs but has increased over the years. Secondly, I've made...
  20. dga5000

    Treated for possible lyme

    Thanks for the heads-up on the IL-8s blog post. All my IL-8s results were done by Redlabs. They started slightly out of range in 2011 (33.9) and then jumped in 2014 (8192)
  21. dga5000

    Treated for possible lyme

    Hi Jonathan. I've just scanned through all my results for the last 8 years and evidently I have not been tested for it. I was convinced I had been. What does C-Reative Protein measure?
  22. dga5000

    In Belgium to see Dr de Meirleir

    Hi Valentijn. It's interesting that your Prostoglandine E2 has more than doubled since starting treatment. Prostolgalandine E2 is a measure of neurological inflammation. I imagine the antibiotics are causing herx within the brain itself. KDM has prescribed Diclofenac to keep mine under control...
  23. dga5000

    Treated for possible lyme

    Hi everyone. I've just got back from visiting a specialist. We discussed my recent results (see below) and he is convinced I have now entered the late stage of an inflammatory disorder and that it is now critical that we get to the virus / bacterial problem that is causing it. So far I have...
  24. dga5000

    About to start Lyme treatment

    Hi Vitalic I've just come back from seeing KDM in Brussels. I asked him about the 4ME as it is so expensive. He explained that one of the main reasons for giving it was that "4ME prevents herpes viruses from re-activating." He also explained that he prescribed Lypospheric Vitamin C because it...
  25. dga5000

    New Medical Director of WPI--Kenny De Meirleir M.D., Ph.D.

    I've seen Prof de Meirleir twice in the last year. The first visit cost me £3500 and the second £2000 - this included travel and hotels etc. I expect further visits to be much less as we zero in on the specific problem with the immune system. Almost all the costs were for blood tests and some...
  26. dga5000

    VIPdx Statement from Vince Lombardi re: Testing

    Have just tried to ring Vipdx. The call is met with the statement - "The number you have dialled has been disconnected or is not assigned."
  27. dga5000

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Hi Everyone. Just got my VDR results back from REDLABS. FOK: Moderate Responder BSM: Moderate to Low Responder My brainfog is acute at the moment so I can't read through the thread to find your what this means!! Any feedback welcome. Waiting from XMRV results.
  28. dga5000

    VIP Dx Culture Test Poll For A LATENT Infection

    I have just received my test result from VIP Dx. I was tested in February via Biolab in London using their improved culture method. I tested negative.