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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. Rrrr

    Rrrr Senior Member

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    i am sorry to read how hard the gcmaf journey is for some of you!!!! i'm so sorry! i will start it, i hope, next week. i will see KDM on Monday, april 11, if all goes well with my health and the flight from the USA. i will do the breath tests and the stool test.

    STOOL TEST
    does anyone know if i am not to eat certain foods before the stool test? or not to take any meds? they told me just to stop probiotics 1 week before the test. but i have also stopped my nystatin and cholesteryamin (spelling?) and apple cider vinegar a week before the tests, all of which impact fungus and molds in the gut. but i wonder if i should not eat certain foods before the stool test, too? does anyone know? [UPDATE: THEY JUST SENT ME AN EMAIL THAT SAID, "You do not need to avoid certain food."]

    BREATH TESTS
    the instructions kdm's office sent me were this: "The day before the examination: Avoid food with a lot of fibres (brown bread, bran, pasta, chocolate, spicy sauces, muesli, fruit and vegetables) and candy (such as chewing gum)." soooo, if i am to avoid fibres, fruit and vegetables, what the heck CAN i eat?

    best,
    rrrr
  2. Rrrr

    Rrrr Senior Member

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    IRIS

    do we have any idea why so many of us are reacting badly to the gcmaf? is it IRIS?

    here are a few IRIS articles:

    http://www.cfscentral.com/2010/07/haart-and-iris.html

    and

    http://www.bing.com/health/article/...q=immune reconstitution inflammatory syndrome

    and a reminder (this was posted earlier) that we were hearing thru the grapevine that a well respected cfs doctor (not KDM) thinks that we could treat iris by:

    - blocking all three histamine receptors -- H1, H2, and H3 -- as histamine is a major player in inflammation.

    - so Benadryl, Zantac and Tagamet, or the generic equivalents, could help.

    - i have heard that mild IRIS symptoms could be addressed by Benadryl (25 mg) or Tagamet (200-800mg) or Tylenol (500 mg) given singly or together.

    - i have also heard that continuous problems over time might respond better to Allegra at 60 mg BID or Cortef at 10mg QID for a few days up to a week. i have also heard that Cortef should be considered if the IRIS symptoms are severe.

    - other patients had suggested that high doses of Curcumim, and 500 mg of niacinamide may help.
  3. anniekim

    anniekim Senior Member

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    Blimey, that is so ooo strict, no herbs, no stock, yikes. Congratulations on managing to follow it. I remember years ago when candida diets were all the rage for M.E. i tried to follow it for three months, nearly killed me, was so hard. If I was fairly certain that this diet would improve my health, I think I could just about manage it, but I'm not certain, so don't know whether I have the strength to do it. But absolutely hats off to those who are managing it.
  4. aquariusgirl

    aquariusgirl Senior Member

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    garcia, can you elaborate on the side effects?

    I noticed berthe saying the same thing about patients having a hard time with it...It kind of amazes me that KDM doesn't have a better protocol for IRIS. HE just hands it over and cuts you loose...it looks like.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Everybody,

    Nabo, sorry to hear that there are quite a few on the Dutch forum having a hard time on GcMAF. I'd tend to say I have a "strong" reaction, rather than to say a "bad" reaction. I think what I am feeling is the GcMAF working.

    I have reduced my dose to half till I get through the travel back to the States as I have to be functional to see KDM and to travel.

    I don't think I have had an IRIS or inflammatory response, but I'd guess it is because I am also taking LDN which should help a lot with inflammation. My "hard" days feel more like I am drained of energy and have a mild headache. But I can be in bed for a whole day and then feel fine the next. The reaction seems to pass quickly and then I have more stamina than before I started GcMAF.

    As far as IRIS, the protocols suggested here should work. I take an anti-histamine but don't seem to need to take the other things.

    Charles, I don't know of any US doctor who is officially working with KDM, but he might be open to a doctor approaching him about it. He certainly has a lot of contacts in the States.

    I had my 11th shot yesterday and today am feeling it, but only lethargic and a slight headache. My week is an up and down with about half the days "good" and the other half "not so good" and occasionally a bed day.

    Sushi
  6. Nabo

    Nabo

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    Thanks everybody!

    I have read a lot about IRIS, but i dont know exactly what it is.

    Is it something i could have?? And then what??

    And another question:
    The last few months, i cant take any drugs (like ibuprofen, diclofenac, paracetamol, tramadol) because i think i am drug-sensitive.

    If i take one of these drugs i get all the side-effects.
    It is very scary, but at the same time i have so much pain i need medication.

    But i cant take it beacause of the drug-sensitivity
    Does anyone know something about this?????????
  7. girlinthesnow

    girlinthesnow Senior Member

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    The strict GF CF low fructose histamine free diet is to help control inflammation. It is very tough but so is being sick for decades.
  8. davidnoakes

    davidnoakes *****

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    Nabo: Is your GcMAF GcMAF?

    Nabo said:

    " a lot of people i know form my dutch forum are reacting very bad on gc maf.

    Almost everyone is now back to 1/5 dose!
    They have a lot of sideeffects, such as strong headache and other pains.

    Me included! "

    Have you been shown there are independent sterility, activity and identification assays on your GcMAF?

    If not, it is probably not GcMAF, and that is why you are getting headaches and pains.

    As for IRIS, you can read about it at (link removed) , click "List of Research" at the top, IRIS is the 6th item down.

    Best wishes

    David Noakes.
  9. ukxmrv

    ukxmrv Senior Member

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    Girlinthesnow,

    Being sick for decades and trying lots of different diets is also very hard. Just something to remember when we try unproven things. Helps with the terrible disappointment for me and reminds me of all the things that I have tried before at enormous personal cost. Tried many diets including strict ones as above.

    Just my own way of coping with the terrible failures in treatment. The viewpoint may not help all and we all cope differently to this.
  10. Rrrr

    Rrrr Senior Member

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    i am xmrv+, about to head to KDM for (i hope) GcMAF next week. in addition to the normal baseline testing, i've decided to do some fancy tests pre and post-gcmaf treatment, to see if i get any improvements on my lab results.

    so i tested for nagalase at Vitamin Diagnostics in New Jersey (http://www.europeanlaboratory.nl/) ($65)

    and

    i did the "mini-cytokine" panel from WPI's lab (called VIP). the "mini-cytokine" panel test is technically called the "NKCP & LYEA WPI" ($225). here are the results from that test, pre-GcMAF treatment. if anyone can help me understand it, please do. i have yet to wrap my head around the whole natural killer cells thing, so i'm in the dark.

    Flow Cytometry Report
    C19A - normal, in reference range
    CD19 - normal, in reference range
    CD4 - normal, in reference range
    CD45 - normal, in reference range
    CD48 - normal, in reference range
    CD4A - normal, in reference range
    CD8 - normal, in reference range
    CD8A - normal, in reference range

    NKC1: %NK cells in blood (CD16, CD56+/CD3-)
    abnormal results: 3.35 (normal range is 6-20%)

    NKC2: % Specifid cell lysis
    results: 16.8 (normal range is 6-20%)

    NKC3: % Lytic Activity
    abnormal results: 50.2 (normal range is 3-33%)

    NKC4: %T Cells in blood (CD3+)
    abnormal results: 83.69 (normal range is 45-76%)

    NKC5: Total T-Cell (CD3+) Absolute count
    results: 1310 (normal range is 750-2310/cmm)

    NKC6: NK cells (CD56+) Absolute Count
    abnormal results: 50 (normal range is 120-410/cmm)

    NKC7: NK-T: NK Ratio (the ratio of CD3+/CD56+ (NK-T) cells to CD3-/CD56+ (NK) cells)
    abnormal results: 0.44 (no reference range given)
  11. girlinthesnow

    girlinthesnow Senior Member

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    Ukxmrv, I'm not sure what you mean in your post. I have been sick for decades and I have done many diets. Are you saying that this is also true for you or something else?
  12. ukxmrv

    ukxmrv Senior Member

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    Thanks girlinthesnow for asking. Very kind.

    I meant just me personally. The double whammy of being ill for decades, of having done hard diets (often and seriously) and being left worse off is really painful for me. The disappointment and the further struggle to recover from them.
  13. aquariusgirl

    aquariusgirl Senior Member

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    hi rrr
    is that last number right? my NKC 7 is 4.24. also abnormal.
    my NKC 4 was abnormal. 79.45,
    my NKC 3 lytic activity was normal... but just barely ...10.3
    my cd4a was high out of range.
    and on a separate panel, my IL8 was super high too. 20x the upper end of normal.
  14. mojoey

    mojoey Senior Member

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    I added a HLA-DR category to the public GCMAF spreadsheet https://spreadsheets.google.com/ccc...V2FONGlOMXBXV3c&authkey=CIH8jqcC&hl=en#gid=0:

    I thought it'd be interesting to see if multisusceptible and mold-susceptible genotypes have a correlation to negative reactions to GCMAF. I have the "dreaded" multisusceptible 4-3-53 genotype
  15. Charles555nc

    Charles555nc Senior Member

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    What are the people saying (on the dutch forums or otherwise) about GcMAF, who have been on it the longest?

    How reduced their symptoms are, how much a reaction they get to the injections, how long they have been taking it for, dosage amounts....etc
  16. Rrrr

    Rrrr Senior Member

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    yes, i typed it correctly. :)
  17. aquariusgirl

    aquariusgirl Senior Member

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    My infectious disease doc, Joe Brewer, told me that he heard that elevated IL8 is showing up consistently in XMRV+ cases FWIW>
  18. undcvr

    undcvr Senior Member

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    Hey to those of you going to see KDM or in contact with him, can you quiz him on the news that he said is coming out soon referring to XMRV ? He seems to think that XMRV IS the cause behind CFS even afterall the hullabaloo ( ie contamination issues). He must be referencing his info from somewhere and it seems possible that it could be the Ian Lipkin research. I dont want to start gossip but I would really like to know more about this or even the eta date for the study coming out.

    Btw about KDM's theory that CFS does start in the gut and that its gut dysbiosis, I do feel that when I am regular and move my bowels at least once a day I do feel better and that moving my bowels is an important yardstick as to how i am feeling in general.
    Also there are many naturopathic approaches to the gut that all recommend some sort of gut detox to drano out our plumbing. Ived been on some of them and have obtained some relief from the, ie Pectin, clay, charcoal, seaweed, high fiber. They even recommend moving bowels out 3x a day.
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    We can try but I think his lips are buttoned up because of a confidentiality agreement he had to sign. He has said "Soon," is speaking at the "Invest in ME," conference in London in May...maybe then? Anyone know more?

    Sushi
  20. Ronan

    Ronan Senior Member

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    He cant due to confidentiality agreement. I do know that its nothing to do with the Lipkin study though.

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