Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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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)
    14.3%
  2. Much Better - I feel significantly better

    4 vote(s)
    19.0%
  3. Somewhat Better - it feel mildly better

    6 vote(s)
    28.6%
  4. No response

    5 vote(s)
    23.8%
  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)
    14.3%
  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
     
    Ninan and allyb like 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

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    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

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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

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    Miami
    Is GCMAF only used for XMRV?
     
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    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
     
  10. chilove

    chilove Senior Member

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    I'm watching this thread with great interest as I'm about to start GcMAF. Can someone please tell me what IRIS stands for?
     
  11. onedayatatime

    onedayatatime

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    I was wondering if anyone can point me into the right direction in ordering gcmaf from the uk?
     
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  13. juzcat17

    juzcat17

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    Singapore
    hi
    are people still using GcMAF. seems its gone quiet on PR.
    anyone still getting results?
    is there a protocol?
    reputable sources?
    thanks
    Justin
     
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    That is because it is available only in a few countries--most of us cannot get it except as a creme.
    Here is a list of reputable sources of the Mafactive creme: http://www.mafactive.eu/store/c1/Featured_Products.html
     
  15. juzcat17

    juzcat17

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    Singapore
    thanks Sushi. in the end what were the list of reputable injectables companies. am going to see if shipping to Thailnd or Singapore can be done
    Thx
     
  16. juzcat17

    juzcat17

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    Singapore
    hi , what dompeople use GcMAF/ Goleic or MAFactive/ GcMAF Creams, and under the second subset, MAFactive Original or Frankincense Enriched Cream
    thanks for input!☺
     
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi, when you want to catch someone's attention you need to quote them (as I did above) or tag them like this: @juzcat17 . Otherwise we are unlikely to see your post.

    As far as giving information on injectables, since they are illegal in the US and many other countries, I don't feel I can do that.
     
  18. Jesse2233

    Jesse2233 Senior Member

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    Anyone still doing well with GcMAF?
     
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I was until it was no longer available. :(
     
  20. Jesse2233

    Jesse2233 Senior Member

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    Oh no! I thought KDM was still using it, is that no longer true?
     

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