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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. Nabo

    Did KDM's treatment help you or did you get worse?

    i am a patient of kdm since okt 2010. and now i already spend 16.000 euros. so like 19.000 dollar. And like i told you in my previous post only got worse and worse
  2. Nabo

    Did KDM's treatment help you or did you get worse?

    i dont have any improvement. i just got worse and worse because of his treatment.. I am now on a lot of tramadol and sleep medication and before i started the treatment i diddnt!!!! very bad!!! yes you can speak to kdm for like 15 minutes... he doesnt say much. Really anoing.... he only says...
  3. Nabo

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

    hi everyone, little update here. Already stopped gc maf 13 weeks. still very sick. BIG HUGE IRIS reaction. Now on prednisone
  4. Nabo

    Rituximab trial ???

    Thank you for responding. Very interesting! Thank you!
  5. Nabo

    Rituximab trial ???

    Hello everyone, i am sorry if there is already a topic about this. But i wanted to know if there are any rituximab trials right now? Are there people on this forum on rituximab? And where can i find information about trials to come??? Can you sign up? Hope to get answers! Thanks...
  6. Nabo

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

    i am still very sick from the gc maf. already 10 weeks in IRIS. Never again these gc maf injections.
  7. Nabo

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

    I had my last shot of gc maf 5 weeks a go. Still i am very sick and having an iris reaction. So much pain..... cant explain feel sooooooooooooooo bad. my nagalase is normal so i think i dont ever have to use that shit anymore!! Sorry.. some people do feel better but i only feel worse and...
  8. Nabo

    IRIS reaction, caused by gc maf

    Yes i am sure this is IRIS. I have had contact with my doctor. I dont use gc maf anymore and never again. Last year i had a bad reaction to and it kept going worse and worse so i had to stop. (dec 2010 - may 2011) now i used gc maf since dec 5th and i took 10ng. So very small dose. I am now...
  9. Nabo

    headache please help

    hi everyone, i have ME since june 2008. And now already have a headache for 3 years. Every day, every hour. and i really dont know what to do anymore. I am a patient of KDM, but my headache doesnt improve. i have tried alternative things like acupuncture, that doesnt work. i tried...
  10. Nabo

    IRIS reaction, caused by gc maf

    Thanks everyone. Yes i am using selenium. Still very sick and os much pain. Yes i am sure this is iris. pfffff :( :( How long does this take??? already 3 weeks soooooooooooo sick!!!:Sign Please:
  11. Nabo

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

    that is a good question. i have chronic hhv6 and my nagalase is normal. But i am so sick and almost bedbound.
  12. Nabo

    IRIS reaction, caused by gc maf

    Hi everyone, i have a question, Do you have any advice what to do against an iris reaction?? I already have it for 3 weeks and this is hell. i really cant live like this... i have so much pain and feel sick! it is caused by gc maf. what can i do?????????????????
  13. Nabo

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

    i am 21 years old and sick since june 2008. yes my c4a was 8.000 + En after 1 year with KDM 6.000
  14. Nabo

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

    @ aprilk1869. Thanks for the info. I am going to read it. @ Daffodil. Yes my nagalase is 0,93. So that is good @ Forebearance. I did take tiny doses and still i am so sick cant do anything. Thanks everyone!
  15. Nabo

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

    i have now stopped the gc maf for 2 weeks. Still am very very sick. I have a really bad headache and tramadol or paracetamol etc doesnt work. I really hate gc maf! and now i really never start it again. (already had problems last year dec 2010-may 2011) Never again!!!! Feel dead sick!!!!!!
  16. Nabo

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

    could it be IRIS ???? KDM is back today, i have send him an urgent email.
  17. Nabo

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

    i alreadu use anti histamine for a few weeks. buth does anyone know if you have to keep injecting while nagalase is normal? and when you have so many side effects (very painfull headache etc) ???????
  18. Nabo

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

    i got my nagalase test result back.. (and other tests c4a, cd14, cytokines etc) But i have a question: My nagalase was tested december 5th and now i got the result and it is 0,93. (0,32 - 0,95) I am now using gc maf since december 5th and i have so many side effects. AGAIN!!! i also used gc...
  19. Nabo

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

    Thank you all for responding! Sorry for all my wustions but KDM is on a holiday so he responds january 24th. so sorry! But thanks for the info. I have checked my vit d levels en did it last week again so i think i hear the new results tomorrow. But the last check up was 25D a little low...
  20. Nabo

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

    Hello everyone I've read a lot about vitamin d with gc maf. But I still do not understand. One says do not take vitamin d and the other says take it. What should I do ?????? Vitamin d yes or no? And how much? The site gcmaf.eu also says that you do not ibuprofen and tramadol can take ...
  21. Nabo

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

    Thanks for your respond. i am know only using gc maf.. so i hope i feel better soon!
  22. Nabo

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

    hello everyone I have been using a couple of weeks artesunate. I have built up very slowly because I am very sensitive to certain medications medication and I really can not. I had to take 1 tablet everyday of 50. but i was still on a half tablet. I feel the last few weeks, more dizzy but...
  23. Nabo

    Artesunate - Cheney dosage and benefits

    hello everyone I have been using a couple of weeks artesunate. I have built up very slowly because I am very sensitive to certain medications medication and I really can not. I had to take 1 tablet everyday of 50. but i was still on a half tablet. I feel the last few weeks, more dizzy but...
  24. Nabo

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

    Thanks for the info... hmm dont know what to do know. kdm told me to take it 3 months every day.... but i dont want dose scary things!!! hmm :worried: :worried:
  25. Nabo

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

    wow Rrrrr ! that is very good news!! that gives me hope! happy for you. @ Chris KDM told me to take it 3 months every day, so i think he knows what he is doing???? i hope.
  26. Nabo

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

    i am also on artesunate, i think it works for me! Everyday 1 tablet.
  27. Nabo

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

    How do you know when you get a lot of inflammation form the gc maf? I always feel so bad en almost badbound. Everyday lots of pain. So how do i know it???? -- That is very interesting of dr enlander! i use nexavir and gc maf, i dont know what the other medicine are. interessting!
  28. Nabo

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

    Hi everyone i was wondering if anyone could tell me something more about the gc maf experiences. I followed this thread last year every day, but i got sicker and sicker because of the gc maf so no computer anymore. i was wondering are there a lot of positive experiences on this forum??? Or...
  29. Nabo

    What is you GC maf dossage? How many nanograms?

    thanks for all the info! Other people?? Your dossage???
  30. Nabo

    What is you GC maf dossage? How many nanograms?

    hi everyone i was wondering, what your dossage of gc maf is? I am very senistive and now injecting 25 nanograms but already feeling worse. (last year i started with 100 nanograms a full vial, but had so many side effects and after 6 months i had to stop because i was so sick of it.)...