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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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    thanks, sergio, for that link and info!

    thanks, ronan, for all yr info, too!!!
     
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I'm not "Crappy," though that isn't to say I'm not crappy...but I'll jump in cause I've been told that Cheney is or will be training some other docs in using GcMAF with patients. But I don't know when, how or who. Maybe someone else does. Cheney is using a different source of GcMAF, but I don't think we have any real data on which is the better source. I think he and De Meirleir keep in regular touch sharing ideas and experience. Both take IRIS seriously and use similar "support" protocols.

    Sushi
     
  3. serg1942

    serg1942 Senior Member

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    Ronan and Cansado

    Hi Ronan,

    Thanks for your reply! Would you mind to post your results when you receive them? It would be very interesting to know what combination is "bad" for KDM, GcMAF effectivity-wise...

    Hola Cansado,

    Hablas espaol? Thanks for breaking down the composition of your IVs. Is that a regular/important part of your treatment? Is it applied to everyone, or just to people living nearby? What is it for? How do you feel with them? Sorry the interrogatory:angel:

    Saluditos,
    Sergio
     
  4. Crappy

    Crappy Senior Member

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    :Retro mad:
    RivkaRivka

    I don't know a lot yet, just that he is sharing with some trusted colleagues. Like everyone else he is trying GcMAF, planning on studying it. As others have posted in here before, he is directing people to BioGroup Laboratories for GcMAF http://www.bgli.nl/. I haven't seen anything about where Dr. Meirleir is getting his.

    That's about all I know so far.

    Like everyone else, I think Dr. Cheney's pricing is outrageous, it certainly eliminated me. However, I think he is passionate about his work and the best quality for all of us is; unlike other medical bureaucracies, he is agile. If he finds something that interests him as a treatment, he doesn't have to persuade 50 others to fund it, study it, report it, gear for a large study, etc... He just implements it and tries it. Maybe fewer of us will be dead thanks to doctors like him, pushing forward as hard as he can. More than our government is doing for us. We may as well be citizens of the Congo for all our government is doing for us. Corrupt leaders in third world countries get more help from our fellow countrymen. Sorry, just really feel betrayed by my own country.
    Pledge Allegiance, my butt! :Retro mad:
     
  5. serg1942

    serg1942 Senior Member

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  6. Ronan

    Ronan Senior Member

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    Interesting. Has anyone sent this on to KDM yet? I'll send it to him if nobody else has yet. I dont want him being flooded with this info from loads of people.
     
  7. serg1942

    serg1942 Senior Member

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    Ronan, go ahead!! ;-)
     
  8. Lou

    Lou Senior Member

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    I continue to wonder about something I read in the research paper by Ruggiero, Pacini and Yamamoto: "It is worty noting that the alleles "b" and "F" are also associated with the highest sensitivity to Vit D; a convergence of the Vit D and GcMAF signaling pathways can thus be hypothosized."

    For those still unsure if they have a favorable VDR perhaps the above provides a clue. It's not completely clear but in reversing the quote could it mean those people most sensitive to vit D (brain fog afterwards, e.g.) are associated with these 'best' alleles? Perhaps Dr. Deckoff-Jones or someone else knowledgable with medical papers could comment. Thanks.
     
  9. mojoey

    mojoey Senior Member

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    I don't think the study is using sensitivity in the sense of symptoms, per se, but rather sensitivity on a cellular level. Vdr is the vitamin d binding receptor, so sensitivity here would refer to the sensitivity of the receptor to vit d.
     
  10. greg22

    greg22

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    It seems that bb genotype is associated with lower level of active D vitamin 1,25-di(oh)
    http://books.google.fr/books?id=5c6...CFIQ6AEwBg#v=onepage&q=bb ff genotype&f=false
     
  11. Lou

    Lou Senior Member

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    Thanks Mojoey and Greg for your responses. I have no background in biochemistry so hope you'll overlook any niaveity regarding this further question. 'Not to beat a dead horse' but aren't our symtoms derived from a cellular level?

    For those who may not be aware of any sensitivity to vit D supplementation I wasn't either until I noticed I couldn't play nearly as well a certain game that requires keen eye-hand co-ordination. I tried it several time, and always after taking vit d there was this reduction of co-ordination.
    So, if interested, you could devise your own personal, though anecdotal, test.
     
  12. fullofbeans

    fullofbeans

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    Hi Diesel,
    are you sure that they are doing the Nagalase at Redlab? this indeed is interesting and I am curious what value did they find for you (i.e. was it at all comparable to the yamamoto values..?)
    Thanks
     
  13. mojoey

    mojoey Senior Member

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    I've been given permission to post this KDM patient's experience:

    It is worth mentioning that this patient does not have OI and wasn't aware of any PEM issues. Those are my two worst issues.

    The test results begs the question of whether redlabs is telling us the specific genotypes? or just characterizing the level responder?

    The bit about H2S and sleep issues is something I can relate to. The degree I tend to get deep sleep and uninterrupted sleep has a high correlation with the amount of trapped bloating I have. Also interesting that KDM thinks you need to address gut issues separately (with antibiotics no less) from taking gcmaf..I was thinking gcmaf would be systemic enough to hit the gut.
     
  14. serg1942

    serg1942 Senior Member

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    Wow, thanks Joey! However it seems this patient is very lucky, being "high responder" for both genes...Anyway, it is still encouraging...

    Best,
    Sergio
     
  15. consuegra

    consuegra Senior Member

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    "My results" with Yasko

    VDR Bsm/Taq -/- A
    VDR Fok +/- Hetero
    VDR Taq -/- C

    "My results" with Redlabs BE

    BSM1 Moderate or low responder

    FOK1 Moderate responder

    Chris

    http://cfspatientadvocate.blogspot.com
     
  16. Crappy

    Crappy Senior Member

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    Interesting consuegra, thanks for the post.

    That would mean all my brain power so far was wasted; because the results are completely opposite of my assumption, ha.

    Biogroup Labs is saying VDR is no predictor of effectiveness, although I am sure they would be happy if all people bought it, all +6 billion.
     
  17. mojoey

    mojoey Senior Member

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    Hey Consuegra,

    Can we take this to mean that Yasko's results are bunk? Your Bsm according to Yasko is bb (highest responder), yet you got the complete opposite result with redlabs
     
  18. mojoey

    mojoey Senior Member

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    Well the doctor planning on doing a trial with BGLI's gcmaf (Cheney) seems to think otherwise
     
  19. serg1942

    serg1942 Senior Member

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    Thanks Consuegra, I am sorry for your results. But I am pretty sure that, if GcMAF turns out to considerably help PWCs with good genetics, we will have soon a way to compensate these polymorphisms at VDR gene.

    I had my blood drawn in Brussels a week ago, and among others tests, I ordered the VDR analysis. Because I also have Yasko's, I will report on my results as far as I know them, and we'll see if there's a pattern we can identify.

    So far, what I can think of is:

    - Yasko's wrong, or they were looking at Taq, instead at bsm...
    - Redlabs is wrong
    - Yamamoto paper consider bb as polymorphic...

    We'll see!

    Best,
    Sergio
     
  20. Crappy

    Crappy Senior Member

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    I see Rich van Konynenburg's Phd. posts on this site. Amy Yasko Phd. includes VDR in Methyl Cycle analysis.

    I am curious what someone with their knowledge thinks about being able to potentially increase GcMAF effectiveness by manipulating the Methyl Cycle?
     

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