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

Discussion in 'GcMAF' started by Sushi, Jun 30, 2010.

  1. girlinthesnow

    girlinthesnow Senior Member

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    I saw KDM last week, he told me to stop taking GcMAF at 20 doses. I've had 15 so far.
    He said to remain on Nexavir for another 9 months.

    KDM did tests for vit D 1,25 OH, calcium, nagalase and retested red and white blood cell count, the cytokine inflammatory panel, perforin, CD57, s CD14 and IgA/IGM. Also tested MLV by PCR.

    Improvements are in my sleeping pattern and length of sleep and in my gut. Taking nexavir and having an epsom salt bath in the evening has improved my sleep enormously and the courses of alternating antibiotics/probiotics/amoebicide is slowly starting to improve my gut function.
  2. janey

    janey

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    I have just started treatment with GcMAF. I have read this whole thread, which has been extremely helpful. I am so grateful to all who have contributed, so of course I would like to share my experience here too.

    After being ill for 14 years (now at a moderate/severe level), I am feeling hopeful about this treatment, as I tested positive for pMLV and Im a high responder for both BSM and FOK on the VDR test. I am a KDM patient and have tried a whole lot of his treatments. I am currently taking Nexavir and B12 injections, valtrex and some other medications and supplements.

    Ill put all this info on the spreadsheet soon. I had my first injection 4 days ago and so far no real changes, apart from a slight change in sleeping pattern. Im taking 1/5th of a dose.

    Thanks again to all who have posted on this thread!
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Thanks Janey for joining the discussion. The more we can learn from each other's experiences the better. I hope you do well on GcMAF. I see you are taking Valtrex--this is interesting in light of the thread Sergio just started in the GcMAF subforum. I wonder if, with your experience and recently seeing KDM, you could respond to that thread?

    Do you think that KDM is prescribing antivirals together with GcMAF for many patients? It sounds like it might be a good idea. I am a KDM patient also--I traveled from the States to see him. Do you live in Europe? That does make it easier.

    Keep in touch and very best wishes.
    Sushi
  4. janey

    janey

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    Melbourne, Australia
    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 don't know what his current thinking is. Sorry I can't be of more help with this.

    Thanks for your kind wishes. Best wishes to you too. I hope you get fantastic results with this treatment.
  5. greg22

    greg22

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    Hi Sushi,

    You can see on this very interesting blog http://pochoams.blogspot.com/2006_11_01_archive.html held by a spanish patient that KDM has been using Valtrex (Zelitrex in Europe) in the past for EBV infection.
  6. freda

    freda *****

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    Hi vli, you asked about vitamin d and gc maf. From what I understand, gc maf is manufactured from Gc protein. Its other name is vitamin D binding protein. This implies that it actually binds and transports vitamin D. I read a while ago on the Bahamas web site that vitamin D enhances the action of the gc maf. Perhaps it binds to the protein and makes it more attractive to the macrophages. Sorry I cant find the link to post here.
  7. Nabo

    Nabo

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    Holland
    Hi everybody

    quick update:
    I am now already 8 weeks on a break from gc maf.
    Had so many side effects!!!!

    Went to KDM en now i am getting more tests done. (blood, urine etc)
    And i need an gastroscopy ! very scary!
  8. vli

    vli

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    The gastroscopy to me wasn't scary compared to many things we have to deal with...
  9. serg1942

    serg1942 Senior Member

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    Spain
    Hi Nabo, I had my gastroscopy done with propofol, and it passed in 1 sec... I fell asleep immediately, and when I woke up, they had already taken all the samples they needed. I didn't feel anything at all... The anesthetic had not any side effect on me, and wore off in just a couple of hours.

    Really, I had another gastroscopy done years ago without anesthetic, and it was a real hell.

    Just my experience,

    Saludos,
    Sergio
  10. Rrrr

    Rrrr Senior Member

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    i now have my 2nd appt with kdm, scheduled for mid july.

    rrrr
  11. Nabo

    Nabo

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    Holland
    Thanks for the information.
    I also get anesthetic so i hope i fall a sleep. (have a hard time with falling a sleep)
    So wednesday to Vilvoorde (brussels) again! it is going to be tough!
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hey Nabo,

    I was in the room while Sergio had his gastroscopy. He woke up laughing his head off! I think the only hard part of it was the idea. But do get "drugged!"

    Sushi
  13. Berthe

    Berthe Senior Member

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    near Antwerp
    Hi Rrrr, is this an appointment by phone or are you actually flying over to Brussels?

    Nabo, I wish you all the best. Get drugged and high :D

    I hope it won't take 9 months to get rid of the awful pain in joints and muscles... I forgot who mentioned this. I have my next appointment with KDM at the 20th of July. Hope to leave his office a bit 'wiser', because the presribed Celebrex is doing the opposite in my body.

    Did anyone read the article about the adverse interactions of NSAID and SSRi in patients with ME/CFS?

    Love,
    Berthe
  14. Susanne

    Susanne

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    Hi, this is my first post in this forum. My daughter is 28, has had ME/CFS since 2001, and I am writing on her behalf. She started Gcmaf 5 weeks ago. We are slowly reading through this great thread, and thought we would add her experience and ask a question about genotype.

    She has been a patient of KDM since January 2004, and in 2005 started to feel so well that she could start studying, and move to a student hostel. As time went on, CFS treatment became a routine, and she followed the treatment plan maybe 80 %, while focus was on studies, friends,working, travelling etc. There were bad days every month, but no relapse. Test results regularly showed high C4A, low CD57.

    Last year we tried another clinic closer to home (which is familiar with KDM treatment). She started on a new treatment plan in April this year and on the 28th April she almost fainted while at work. Since then she has been in a relapse.

    In May she went to Himmunitas, and started Gcmaf. She has now taken 5 injections and is continuing. She will go to Himmunitas again in August.

    Apart from Gcmaf she is taking Nexavir. And she continues her usual treatment - B12, liposomal glutathione, probiotics (has just changed to Mutaflor), vitamins etc., strict diet, antibiotics one week every month. Clonazepam at night.

    We have just received test results from Himmunitas (before she started Gcmaf and Nexavir): low CD 57, high C4A, high CD14, high Elastase, IL10 a little over maximum. A H2S test was +4. Nagalase results are not ready yet.

    FOK1 is F/F, and BSM1 is b/b. MTHFR: 1298 A/C high activity, 677 C/T moderate activity.

    Stool test done one week later shows high aerobic bacteria count, with the percentage of E coli too low and the percentage of Enterococcus spp too high.

    We are looking forward to the next consultation, but meanwhile trying to find out as much as we can. We are particularly trying to understand the FOK1, BSM1 and the MTHFR results. As I understand the FOK1 and BSM1 results she should be a high responder, but I am not sure, and I am very much in doubt about the MTHFR results?

    Thanks for all the information in this thread,
    Susanne
  15. lobba123

    lobba123 Senior Member

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    i am experiencing some mild brain fog and irritability (dont want to talk to anyone or listen, cant stand noise, mobiles ringing) after a higher dose of gcmaf 2 days ago (about 0.4ml).dont know if this is due to gcmaf or too much excerceise i had these days since feeling very good after the higher dose.gcmaf makes me usually very relaxed....

    i have read on google this can be managed with high vitamin b12 and magnesium.i saw in your posts many of you also use vit b12 or other ways to manage brain fog/irritability.
    which b12 and magnesium dose you use?i dont have CFS but i think i can benefit as well from vit b12

    thanks
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Susanne,

    Thanks for posting on behalf of your daughter--and welcome to the forum. I really wish you all well!

    I too am taking GcMAF with Prof. De Meirleir and we can all learn from each other. Somewhere in this thread there is a link to a spreadsheet where we are trying to keep track of how those on GcMAF are doing. If you see the link, it would be great if you added your daughter's data.

    Yes, according to the VDR test, your daughter is a high responder.

    Do you live in Europe? Netherlands? Belgium? People on this thread are from all over the world and see different physicians. I traveled from the States to see KDM.

    If you feel like putting your location under your screen name, others near you may wish to contact you.

    Please keep posting here. Our individual experiences are very helpful to each other.

    Best wishes,
    Sushi
  17. girlinthesnow

    girlinthesnow Senior Member

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  18. Susanne

    Susanne

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    Thank you Sushi and Girlinthesnow, I have now entered her data in the spreadsheet and have looked at the data there - I am thinking about the combination of being a high responder and having a quite high C4a before she started Gcmaf, and looking at others with the same profile. Maybe it would do her good to lower her dose, she is now on 50 ng pr week SC.

    The problem that has increased is the sleep dysfunction, and maybe cutting down on the dosis would help her. As always it is hard to say if the increase in the sleep dysfunction is due to Gcmaf or something else.

    And thank you for the tip about including our location, Ill see if I can do that - we live in Denmark.
  19. Rrrr

    Rrrr Senior Member

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    hi berthe,

    my appt is via phone!

    rrrr
  20. Rrrr

    Rrrr Senior Member

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    that is a high starting dose, from what i hear. it used to be a normal starting dose, but lately kdm has patients starting at 0.20 ml. i would ask him if i could drop down to that dose, if i were you. the gcmaf accumulates in the body over time. and it can suddenly hit you hard, even if the first 8 or more doses felt fine. for each person, it is different. for me, it was after about 8 doses that i got slammed with it. now i've been off gcmaf for 2 weeks and i'm still feeling the strong effects of it (i crashed, and am doing poorly now. hoping it passes soon, but has not yet passed after a few weeks).

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