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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. J

    Nexavir and 4ME

    Does anyone have experience with both Nexavir (or Biopressin) and 4ME? I'm interested to hear whether you respond in the same way to both or not. Thanks.
  2. J

    GcMAF trial

    Omar, firstly I want to echo what Sushi has said about finding out the concentration of the GcMAF in the vial and work out how many nanograms is in there. This is really important. I started at a dose of 10 nanograms, which is really small. I wouldn't suggest starting at a higher dose. You can...
  3. J

    GcMAF trial

    Hi Omar I've been on GcMAF for a long time. As is often the case with CFS, we need to start at very low doses and slowly work our way up, depending on what we can tolerate. My initial reaction at 0.2 dose was really bad. I had to wait for a few weeks till I recovered. I then tried again at a...
  4. J

    SmartDNA

    Has anyone used SmartDNA for nutrigenomic testing? I've had this done and would be interested to hear any thoughts about the usefulness or reliability of this test.
  5. J

    Amy Yasko Methylation Protocol

    Great, thanks Caledonia. How have you been going with this so far? Any improvements? Also, I'd be very interested to hear about the errors that you mentioned.
  6. J

    Amy Yasko Methylation Protocol

    Is anyone following this protocol? I've had some of the testing done and planning to follow parts of the Yasko protocol (ie. a bit more complex than Rich's simplified protocol). I would love to share this adventure with others.
  7. J

    GcMAF and Multiple Chemical Sensitivity

    I have MCS and am taking gcmaf injections. I don't think I've noticed any changes in that since starting gcmaf, however, I've been taking Nexavir/Biopressin for some time and that dramatically improved my chemical sensitivities. I'd suggest this would be a great treatment to try first if you...
  8. J

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

    Daffodil, I've just had my Vit D retested. Both 25 and 1,25 are now normal for the first time since I've started testing almost a decade ago. I've been on gcmaf for about 8 months and I'm taking 1000 IU Vit D supplement daily.
  9. J

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

    Daffodil, some of my symptoms have improved, mainly cognitive functioning and quality of sleep.
  10. J

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

    Daffodil, when I had a similar experience to you, I stopped completely for a couple of weeks until I recovered, and then started again on 0.1 and slowly built it up to 0.25, which I am now tolerating well. This really worked for me. I hope that whatever you decide to do works for you.
  11. J

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

    Hi Nabo The vit D thing is very confusing. Have you had your levels checked? I checked both my 25 and 1,25 levels before starting gcmaf and after 1 month. They both dropped to well below normal levels. I then added a small amount of vit D (1000 IU) and I then started noticing improvement. This...
  12. J

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

    Good luck, Forebearance. I hope it works for you. Janey
  13. J

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

    Karen, I sent you a private message. Janey
  14. J

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

    Daniele, I also get muscle fasciculations on gcmaf. It's usually on my eyelids and yesterday I got it on my stomach. I mentioned this symptom to my doctor, but he didn't seem concerned and didn't comment on it. I'm not particularly worried about it either. Have you talked to KDM about it? I've...
  15. J

    Successfull GcMAF Therapy

    Here's a good translation of eikmar's post: A successful XMRV/MLV therapy My first visit to Prof. Dr. Kenny De Meirleir (KDM) took place in Brussel on 12.12.2005. At that time he still worked at the Vrieje Universiteit. Having gone through my diagnostic findings and some questions KDM said: "I...
  16. J

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

    Lobba, I'd be interested to hear how you go with the beta glucan. I'm interested in trying this too.
  17. J

    Gcmaf and diet

    Hi Chrissie I don't have advice about diet while on gcmaf, apart from mentioning that on the bgli website they say that carrageenan, a food additive, can block macrophage activity. I just wanted to wish you the best of luck with this treatment.
  18. J

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

    Aquariusgirl, I think the calcium channel blocker is helping. My main problem with gcmaf was insomnia. I'm only taking a quarter of a tablet and I'm sleeping ok now. But I've been injecting fortnightly rather than weekly until this week. The real test will be to see how I go with weekly injections.
  19. J

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

    Lobba, I'm a high vdr responder. I don't think my 25 vit D test was wrong. It dropped by only a small amount and it has been around this level for the past 4 years anyway. Considering that both my 25 and 1,25 vit D levels are below the reference range it might be a good idea for me to start...
  20. J

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

    While were discussing vit D, heres results of my recent blood tests: Just prior to starting GcMAF, my 25 vit D was 34 and after 4 injections it dropped to 29 (reference range >50). Prior 1,25 vit D was 150 and after 4 injections dropped to 61 (reference range 65-175).
  21. J

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

    I have just had some email correspondence with Prof Ruggiero. I asked him whether vitamin D is required for GcMAF to activate macrophages and he said that the answer is not clear. I'd be very grateful if David or anyone else could refer us to any research showing how GcMAF activates macrophages...
  22. J

    Gcmaf-reactions and side effects

    Good idea, Samina. Do you think perhaps flu-like symptoms may be ok, but having severe sleep problems as a main reaction may be more problematic?
  23. J

    calcium channel problem and gcmaf

    Leonora, thanks for your concern and your advice. I think you're absolutely right that I have to either reduce the dose or increase the intervals between gcmaf injections. There is no way that I could keep on going without much sleep. I skipped the last injection to allow my body to recover and...
  24. J

    calcium channel problem and gcmaf

    Girlinthesnow, thanks for that info. I may have to find a way to get it from England/Europe. After the awful week of insomnia that I've had I'm thinking that this may be a way to help me keep going with the GcMAF. I'm a bit concerned about the blood pressure issue too. I've been on florinef to...
  25. J

    calcium channel problem and gcmaf

    Girlinthesnow, thanks for sharing your experience. May I ask what dose Nimotop KDM has prescribed for you? Also, was it affordable? Over here it's really expensive. That's interesting that Dr Goldstein had success with it. I'd never heard of it being used for CFS before.
  26. J

    Does Gc Maf makes you worse first before getting better?

    Spring, I'm glad to hear that you've improved since stopping the gcmaf. I'm planning to skip my injection this week too as I can't tolerate the side effects. I was wondering whether KDM recommended anything else to you to cope with side effects, apart from stopping gcmaf? I believe he used to...
  27. J

    calcium channel problem and gcmaf

    Leonora thanks for your reply. Im really sorry that GcMAF has been so rough on you and that the calcium channel blockers made it even worse. I hope the magnesium continues to help you recover. Perhaps those with suspected open calcium channels should try magnesium before trying nimotop (or...
  28. J

    calcium channel problem and gcmaf

    I'd like to start a thread about calcium channel problems caused by GcMAF. I heard today that KDM is saying that this problem leads to vasodilation, which causes symptoms such as headaches and sleep disturbances. KDM is apparently treating this with a calcium channel blocker called Nimotop...
    • janey
    • Thread
    • Replies: 17
    • Forum: GcMAF
  29. J

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

    Here's a quick update on my GcMAF experience. I've now had 3 injections (1/5th dose) and the initial benefits that I had have disappeared. My sleep patterns have changed - sleeping more in the afternoon, but waking up more at night. I have an odd experience to report - 3 hours after my 2nd...
  30. J

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

    Sushi, I started taking valtrex a couple of years ago. I had very high IgG antibody levels for EBV and HHV-6. I also suffered from frequent cold sores. The valtrex was not prescribed by KDM, but he is happy for me to take it. I don't live in Europe and actually haven't seen him for a while, so I...