1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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GcMAF Poll

Discussion in 'GcMAF' started by Cort, Jan 20, 2011.

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I've tested positive for XMRV; my response to GcMAF has been

  1. Incredible! I feel like a new man or woman

    3 vote(s)
    21.4%
  2. Much Better - I feel significantly better

    3 vote(s)
    21.4%
  3. Somewhat Better - it feel mildly better

    5 vote(s)
    35.7%
  4. No response

    0 vote(s)
    0.0%
  5. Somewhat worse

    0 vote(s)
    0.0%
  6. Significantly Worse

    0 vote(s)
    0.0%
  7. A Nightmare - GcMAF was a nightmare!

    3 vote(s)
    21.4%
  1. Daffodil

    Daffodil Senior Member

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    i thought xmrv was dead
  2. Rrrr

    Rrrr Senior Member

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    gcmaf

    i have been sick with me/cfs for 23 years. much of it homebound and bedridden.

    i have been on gcmaf + nexavir for 1 year now and i recommend it. i get my GcMAF from a doctor in europe and my Nexavir from Johnson Compounding Pharmacy in the Boston area. but there are ways to get GcMAF in the USA, that is, through the labs called BGLI.com and gcmaf.eu). this is my summary of my experience so far on GcMAF. the trick for me, i think, and the good results I am having, is that I am taking GcMAF in a tiny tiny dose once a week. if i were to do larger doses, i'd likely get that poisoned feeling back again (see below for what i mean.)

    March 2011: I started Nexavir, building up to 2 ml per day.
    April 2011: I started GcMAF at 0.20 ml per week. (My Nagalase was 1.90)
    June 2011: After my 7th injection of GcMAF 0.20 ng, I suddenly began 6 wks of feeling very sick, poisoned and bedridden. I stopped GcMAF for 6 wks.
    September 2011: After poisoned feeling passed, I felt better and started to go on 30-45 minute walks for the first time in 3 years. A major accomplishment!
    September 2011: I began the Creon (digestive enzymes), probiotics and antibiotics -- all according to my doctor's instructions -- and felt worse:
    October-December 2011: During and after the antibiotics and other new treatments i tried, I was near-bedridden. Liver function test was slightly elevated.
    January 2012: I felt much better and able to start using an exercise bike in my living room for 15-30 minutes each day with only mild PEM. I have never been able to do that in 22 years of being sick! A major accomplishment.
    February 2012: I got a cold and was weak for 1 month. Could not bike or walk.
    March 2012: I began again to use the indoor bike 15-30 minutes each day, with only mild PEM. And I am able to go out of the house more often than before. A major accomplishment.

    Personal comments
    I feel like I crave GcMAF. I want to take GcMAF 1-2 times per week (0.20 ng each time), but each time I take it I am sicker for 1-2 days. Then I feel better. So I just do it once per week.
    I just did my 45th shot of GcMAF and I can tell that it certainly helps me. On the GcMAF, I can go out more, and I can exercise (walk and bike in my living room and only sometimes get PEM).
    But I'm still exhausted much of the time, so the GcMAF has not cured me, yet.

    Nagalase
    1st test in March 2011 (pre-gcmaf): 1.90 (ref range of 0.32-0.95)
    2nd test in July 2011 (after 11 shots of gcmaf, most 1/5th of a dose): 0.80
    3rd test in October 2011 (after 25 shots of gcmaf, most at 1/10th of a dose): 0.60
    allyb likes this.
  3. Xandoff

    Xandoff Michael

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    Northern Vermont
    Rrrr,

    Thank you for this post. I just got my Nagalase levels back and will see my Doctor in Western Mass sometime in late May 2012. I am XMRV positive and my Nagalase level was 1.90. Your post gives me a lot of good information. Thank You Rrrr!
  4. Xandoff

    Xandoff Michael

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    Northern Vermont
    Dafodil

    Science takes a long time to unfold. After receiving my XMRV positive results in 2010 it gave me the courage to find a real ME CFS Doctor. I then tested positive for HHV-6 (3.45), Chlamydia Pneumoniae AB IGM (>1:256), Cytomegalovirus AB IGG CMV IgG (3.1), anemia (on going) High C-Reactive Protein, Vitamin D defiency (29), (in spite of taking 3,000 I.U. a day!) Low DHEA Sulfate (15.0), Mycoplasma Pneumoniae IGG AB (104) Low Testosterone (258) on going, and it suggestive of a past Epstein Barr Virus infection.

    It seems my XMRV+ result was further backed up by the above testing afterI had my XMRV test. Now I just got my Nagalase levels back and they were 1.90.........so I have to say I don't think the XMRV thing is over.
  5. Overstressed

    Overstressed Senior Member

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    Belgium
    Hi Xandoff,

    have you ever had an ANA-test ? I think it's appropriate to do, since you report having high CRP.

    Best regards,
    OS.
  6. Daffodil

    Daffodil Senior Member

    Messages:
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    728
    xandoff.....we have something else..it isnt xmrv. even the ruscetti's know that now. no one is finding it with next generation sequencing
  7. loispix

    loispix

    Messages:
    3
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    Massachusetts
    I have had CFS for almost 13 yrs and tested positive for XMRV in 2009. In January my natural killer cells was 25. In Feb. I started GcMAF (with Dr. E in NYC). March my NKC went up to 75 and I felt somewhat better. In April I began to feel very good and even got that "spark" that I used to have.

    Mid April I started to crash. NKC declined to about 18 in August. Had a very mediocre summer as I have for the last 13 yrs.

    I am wondering about the quality control with the GcMAF since it was working in late winter and then it seemed to stop working in the spring & summer As I was increased dosage my NKC kept declining. Dr. E. thought maybe I was fighting an infection or it was the pollen.

    Didn't make sense to me. But then CFS doesn't make much sense. :(
  8. Looking for Answers

    Looking for Answers

    Messages:
    11
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    0
    Miami
    Is GCMAF only used for XMRV?
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    5,259
    Albuquerque

    No, it activates macrophages in the immune system so it has been used in many diseases including HIV, cancer, autism, and ME/CFS.

    Best,
    Sushi

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