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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. RivkaRivka

    RivkaRivka Senior Member

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    another idea to address the reservoirs that may get "activated" by gcmaf, besides taking antiretrovirals, is to take both nexavir and artesunate. this idea came from a reputable source that i will not disclose.

    is this also what KDM suggests, or is he only suggesting nexavir?

    update: i now hear from reliable sources that KDM is suggesting taking all three: gcmaf, nexavir and artesunate.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Quick and partial answer--I am nearly on the fly to Belgium. It is only available from Redlabs, Belgium. It is an experimental test, and last heard, they weren't charging for it. It is a marker to watch related to GcMAF treatment.

    Best,
    Sushi
  3. Overstressed

    Overstressed Senior Member

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    Hi Rivka,

    I had my Nagalase test done in the Netherlands(http://www.europeanlaboratory.nl), and I payed app. 60 euro's for it. My Nagalase level was 0.7, and was normal. However, the guy from the lab told me CFS-people tend to have low levels. I guess, whoever went there for a test, already was on Gc-Maf, and that might be the reason for having low values. But I'm not sure...

    I was not aware of any lab testing for Nagalase before I started Gc-Maf, otherwise I would have had a baseline to compare with. I'm very curious to see some 'before and afters'.

    Take care,
    OS.
  4. garcia

    garcia Aristocrat Extraordinaire

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    He can do but you have to specifically ask for it.
  5. Alexia

    Alexia Senior Member

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    Hi Rivka,

    I speak Dutch so I'm able to follow the Dutch/Belgium forum. What I read there is that KDM doesn't prescribe the same to everybody. Some people get only Gc MAF others Gc MAF plus nexavir and others Gc MAF plus artesunate (maybe these are the patients who already got Nexavir previously but I don't know), I'm not sure if somebody got the 3 of them together....
    It's difficult to know the cause of these variations because the patients don't understand it either and also some patients have seen KDM for some years already so I suppose that he has tried other medicines before the Gc MAF and knows how the patient reacted.
  6. Ronan

    Ronan Senior Member

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    I'm a KDM patient for over 4 years and am on Nexavir, Artesunate and GcMAF. I took Nexavir a few years back also.
  7. froufox

    froufox Senior Member

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    Hi Ronan, how did u get on with the Nexavir and how are u doing on the combo u are now on?

    Thanks
  8. froufox

    froufox Senior Member

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    Hi Rivka

    Yes I got tested for Nagalase...as Sushi pointed out that test was actually free...i dont know if thats just the case if you are having all the other tests done or whether its free anyway.

  9. serg1942

    serg1942 Senior Member

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    Hi Rivka,

    I am awaiting for my nagalase results. As Sushi has told you, it is for free at Redlabs. Maybe this is only when you order other tests. Also, No idea whether it is still free...

    The rationale for testing nagalase is that, in theory, HIV infected cells and cancer cells release this substance to inhibit the formation of GcMAF in our body (this is a defense strategy to evade the immune system). Therefore, by taking GcMAF, we are bypassing this blockage, so that a proper immune response against infected cells or cancerous cells may be mounted.

    So, the logical thing would be that we have high nagalase, and, as the treatment for XMRV works, nagalase drops...I am disconcerted cause some have reported normal or low nagalase on CFS, and I cannot understand this in the picture of an XMRV infection being vital in CFS...

    Un abrazo,
    Sergio
  10. RivkaRivka

    RivkaRivka Senior Member

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    thanks to all for yr answers! i understand nagalase now.
  11. Nabo

    Nabo

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    - who is now on GcMAF: I am on gcmaf
    - level of severity of ME/CFS: I have sever me/cfs can only sit and lay in bed. And sometimes computer.
    - length of time sick with ME/CFS: More than 2,5 years.
    - when they started GcMAF: end of december 2010
    - their source of GcMAF: K de meirleir
    - their VDR results: Only know that i am high responder.
    - if they are having any good or bad effects from the GcMAF: No effects yet..
  12. RivkaRivka

    RivkaRivka Senior Member

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    nabo, i'll update the list to include yr answers. thanx!

    everyone: is KDM prescribing nexavir injectable or nexavir cream?

    and can anyone tell me what the dose is that KDM is prescribing?
    and if it is injectable, is it subcutaneous or intramuscular?

    thanks!
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    It is injectable, subcut (I think), don't remember the dose.

    Sushi
  14. RivkaRivka

    RivkaRivka Senior Member

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    UPDATED LIST (Jan 20, 2011)

    can we get a list of
    - who is now on GcMAF
    - level of severity of ME/CFS
    - length of time sick with ME/CFS
    - when they started GcMAF
    - their source of GcMAF
    - their VDR results
    - if they are having any good or bad effects from the GcMAF
    - NEW QUESTION: are you on Nexavir and Artesunate, too?

    if you send me the names, i'll keep adding them to this list. or you can cut and paste the list and add it yrself to yr own post.

    == Past ==
    Joey (Undisclosed source. No response from GcMFA, but it was only a limited trial of a pre-curser of GcMAF)

    == Now ==
    1. Cansado
    KDM, Fall 2010

    2. Overstressed
    Moderate ME/CFS. Ill 3 yrs. Started May 2010, FOK Low responder, BSM moderate to low responder. No signficant response to GcMAF.

    3. lili85
    Increasingly ill for 5-6 years, positive for XMRV & MLV related virus. KDM, started Nov 2010. VDR: FOK high responder, BSM moderate or low responder (Redlab). Good effects so far (9 weeks into the treatment).

    4. CindyWilliams
    Dr. Sharp, Nov 2010??

    5. Nabo
    Severe ME/CFS (only sitting and bedridden). Ill 2.5 yrs. Started GcMAF with KDM at end of Dec 2010. VDR results: Only know that i am high responder. No effects yet.

    6. Ronan
    KDM, Dec 2010

    7. Lou
    Sick 20+ yrs. Got GcMAF direct fr BGLI, thru his doctor. Started GcMAF and artesunate Jan 2011. No response yet.

    8. Garcia
    KMD, Jan 2011

    9. Froufox
    Ill for 18yrs, moderate/severe. Started GcMAF 11th Jan 2011. Source of GcMAF - KDM. VDR: FOK1 - moderate responder, BSM1 - Heterozygote. Effects so far - increased depression, lots of headaches, lethargy, light sensitivity, inflammation in sinuses. Possibly some mild good effects at times eg extra energy, less inflammation in head.

    10. Tormenta
    KDM. Started GcMAF on Jan 2011. FOK Low responder, BSM moderate to low responder (test done at redlab).

    == soon ==
    Sergio: KDM, Jan 2011
    Sushi: KDM, Jan 2011
    Vli: KDM, Jan 2011
    Fili: KDM, Jan 2011, VDR Moderate responder/High responder
  15. Lou

    Lou Senior Member

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    Hi,

    We know that bgli start patients at 1/5 normal dose --in my case for first eight shots-- so if someone going to KDM could find out how he doses it may help down the road as one aspect of comparison.

    Thanks,

    Lou
  16. garcia

    garcia Aristocrat Extraordinaire

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    KDM starts people at a full/constant dose. There is no ramp-up. Though obviously we don't know how KDMs full dose compares to BGLIs full dose.
  17. Tony

    Tony Still working on it all..

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    I've found nexavir to be pretty helpful, though it did take about 8 months to notice. After almost a year it became very noticeable and I've gained about a 5% overall functional improvement.

    With regards to artesunate in KDM's treatments I'm pretty sure that not everyone is on it. I'm not. It may be that those who have measureable high viral titers are on it? Or some other abnormal lab results? If people who take it were to post some abnormal test results we may be able to work it out.

    My own results showed no viral titres to the usual suspects of EBV, CMV etc but IL-8 is pretty high at 195 (range 0.00-70.00)
  18. lili85

    lili85

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    Norway
    List


    lili85: Increasingly ill for 5-6 years, positive for XMRV & MLV related virus. KDM, Nov 2010. VDR: FOK high responder, BSM moderate or low responder (Redlab). Good effects so far (9 weeks into the treatment).
  19. RivkaRivka

    RivkaRivka Senior Member

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    tony, thanks for yr info. are you on gcmaf, too?

    lili, thanks for your info. i'll input it!!!!! can you tell us more about what good results you are experiencing, just to give us all hope?
  20. Lou

    Lou Senior Member

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    Hi Citybug,

    Sorry that I initially missed your message. I actually brought gcmaf to the attention of my doctor. She's an integrative doc. Her being the first I contacted makes it 1 for 1 attempt, making the odds in your favor that a willing doctor can be found around the greatest city in the world, NY. Ooops, just being biased. Hope this helps.

    Best,

    Lou

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