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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. Jenny

    Jenny Senior Member

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    Thanks OS - yes I think that's likely, but can't be sure.

    joey - I can't find out anything more about my results. Emailed Sciona and they didn't reply (that was a couple of years ago). Now I can't find their website so maybe they've gone out of business. Tried to find out more about VDRs on the internet, but it seems the terms normally used aren't the same as those used in my results.

    Jenny
  2. vli

    vli

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    Can someone please explain all this to a pea-brain like me?? I only did Biology up to the age of 18.

    From what I recall capital letters are dominant alleles and little letters recessive right?

    So according to
    bb/FF will respond more than Bb/Ff who respond more than BB/ff right?

    So what does "b" or "F" stand for in that paper, which is what I don't understand. Does VDR-- (me) mean bb/ff (which is not a genotype mentioned in that paper--does that mean I'm wrong)?
  3. garcia

    garcia Aristocrat Extraordinaire

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    VDR BSM +/- is Bb
    VDR Fok +/+ equates to ff
  4. garcia

    garcia Aristocrat Extraordinaire

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    yes

    yes

    What do you mean by VDR-- ???
    Specifically I need to know your genetic results for VDR Bsm and VDR Fok.
  5. vli

    vli

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    I'm Bsm +-, Fok --, so does that mean I'm Bb/FF??
  6. garcia

    garcia Aristocrat Extraordinaire

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    Yes! (I am Fok -- too btw, but I don't know my Bsm status yet).

    Well that's what the paper says. But the paper could be wrong.

    yes
  7. serg1942

    serg1942 Senior Member

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    Thanks guys for bringing up this discussion! I am also racking my brain with this issue, as I am XMRV+ :)victory:) and am putting a lot of hopes in GcMAF...:confused:

    Ok, I have the Yasko's genetic tests done, and I am:

    VDR Bsm/Taq +/+ G
    VDR Fok -/- C
    VDR Taq +/+ T

    Quoting the Yamamoto study:

    Has anyone the full paper? I’d love to read the tables 2 and 3! :angel:

    Ok, are we assuming that bb and FF are the alleles non-polymorphic? How can we know that from the paper? They just say that bb/FF responds better…

    Assuming that in fact bb=-- and FF=--, comparing with the Yasko Panel, then, I have other doubts:

    Is BsmI the same as Bsm/Taq and FokI=Fok? I’d guess so, but how can we know for sure? Maybe Yasko is looking at other part of the gene?? Has anyone looked for some of the research done on VDR genes, to know whether they are giving different names to the same polymorphisms, as is usual? I've been looking for a while, but I have not been able to figure anything out...

    Assuming these two things, then I would be:

    VDR Bsm/Taq +/+ G = BB (The worse!)
    VDR Fok -/- C = FF (The better)
    VDR Taq +/+ T (Not studied in the paper…)

    So, then, I’d be BB/FF, and they did not studied this combination! We could guess that having one of the polymosphisms, but not the other, would be a good thing, but there’s no way to know, as maybe we do need some normal allele at the Bsm region for GCMAF to work...

    Any insight would be veeeeeeeeeeeery apprecitted…:thumbsup:

    Thanks in advance,
    Sergio
  8. garcia

    garcia Aristocrat Extraordinaire

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    No we aren't assuming anything. The "non-polymorphic" alleles are BB and FF.

    See here for example: http://en.wikipedia.org/wiki/Zygosity


    In particular see here for example for the population statistics for the Fok gene across several populations:


    [​IMG]

    You can see that the dominant/normal allele is represented by the capital letter F.



    You need to contact Yasko if you have doubts about her tests.

    I got some good news, you are BSM ++ = bb
    and Fok -- = FF.

    So you are in the "Ideal" population group for GcMAF, bbFF.
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Garcia...or anyone else who has some knowledge here,

    I plan to see KDM at the end of January. I live in the US. After talking to FedEx and RedLabs, it seems pretty difficult to get a blood sample to RedLabs within 48 hours--if at all--due to customs regulations. I would like to get my Vit D receptor tested before going so that he could assess whether I would be a good candidate for GcMAF.

    Dr. Cheney is asking patients who want to take GcMAF to order the Genova Diagnostics Osteogenomic test which includes a test for the Vit D receptor. However, I don't understand the terminology they use in their online Sample Report and the patient representative at Genova will only talk to doctors!

    Here is how Genova reports it:

    VDR
    Chromosome 12
    Bsml RFLP
    + +
    CTGC [G-->A] CATT

    So I guess this is only reporting the Bsml polymorphism and not the Fok. I am wondering if this test would provide enough information for KDM to prescribe GcMAF.

    Any thoughts?
    Sushi
  10. serg1942

    serg1942 Senior Member

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    Hi Garca,

    Thanks a lot for your message! Yeah, this is great news for me! :thumbsup:

    Ok, It was me who was assuming that the best genetic combination for GcMAF would be the non-polymorphic allelesBut I am very glad I was wrong!

    I didnt know that a recessive gene was a mutant geneBut according to wikipedia, it seems it is, and also according to the table you have posted, where the recessive alleles correspond to the minor percentages in the population:


    The only doubt I have left is whether Yaskos panel looked at the same polymorphisms. It seems it should, but someone wrote to the lab and they werent sure So, I guess I will run the Redlab test, cause it is not very expensive (considering the usual price of genetic testing), and then Ill be able to ensure.

    What it would be very interesting to know, is why GcMAF works better for those being polymorphic homocigous for the VDR bsm region...

    Regards and thanks again,
    Sergio
  11. mojoey

    mojoey Senior Member

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    Hey Garcia,

    Genova told me that ++ = BB, meaning B is the mutation. If true this would go against the grain of genotyping nomenclature, which is odd to say the least. I don't know if it is the same case with Yasko's test, but I hope not because most of the results I'm hearing on the Yasko test are ++, meaning most of us have the worst genotype for gcmaf (as far as Bsm is concerned). This includes myself. However, I think none of us should rely on Yasko's testing to make such an important decision. I simply don't trust Yasko's lab... the fact that they offered Bsm and Taq as one result and told me that it's because they're usually same just increased my suspicions about their pseudoscientific genomic testing.

    I'm hoping that Genova will offer a reasonably priced Bsm/Fok test like Redlabs belgium offers right now and soon. It is not feasible for us to send 2 tubes of blood overnight to Europe, let alone spending $150 on shipping without knowing if customs will block it.
  12. mojoey

    mojoey Senior Member

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    Hey Sushi,

    If I were seeing KDM, I wouldn't risk not having the full results just in case he says he can't make a complete determination without the Fok. Perhaps you can get the Redlabs requisition filled out with KDM as your requesting physician (with his permission) before you go and then just get the blood drawn after you touch down in europe? You only need 2ml whole blood in EDTA tube for the test, so it shouldn't be too difficult getting any commercial lab to do it for a lab-draw fee.
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Joey,

    Well, at least someone at Genova spoke to you! I did speak to someone but all he would do was read to me from the Sample Test Results on the website.

    I have just written VIPdx to ask if they plan to offer this test, and if not, would they ship my blood sample to RedLabs. Earlier today they told me by phone that they couldn't ship it.

    Do you have any contact at Genova who could tell you if they will consider offering this test? I have an Osteogenomic Kit waiting for me, but I don't know if it is worth testing just the one.

    Sushi
  14. serg1942

    serg1942 Senior Member

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    Hi Joey,

    I also hope that Genova is wrong...I am definitely going to run the Redlab test, so when I have the results, within 1 month +-, I'll let you all know, so we can clarify this uncertainty...

    Best,
    Sergio
  15. mojoey

    mojoey Senior Member

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    Thanks Diesel for the snapshot of what KDM is thinking about gcmaf and XMRV---very insightful stuff!!

    Also I had no idea he was testing for nagalase activity to measure progress. I wonder if any commercial labs in the US test for that?? We are so behind in the gcmaf game, yet Yamamoto lives in the US!!

    It wasn't just DeFreitas that was right...Cheney and Peterson both thought almost right from the outset of the outbreak that a retrovirus causing immune deficiency was involved and that EBV was reactivated as a result. Although reactivation of EBV antibodies and low EBNA were both some of the most common lab findings in these patients, they had the foresight and common sense to deduce that a virus that exists in 90% of the population was probably not the cause of immune dysfunction. The label chronic epstein barr virus was never espoused by the tag team but was in fact pushed by the ill-equipped CDC investigators that visited incline village (emphasis on "visited" because they were there mainly for the scenery and admitted as much in Osler's web).
  16. consuegra

    consuegra

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    I have shipped samples from St Paul MN to Redlabs BE via Fedex International Priority and it arrived at Redlabs in time and in good shape. If it is labeled properly it should go right through customs in Paris and then on to Brussels. The shipping is not cheap.

    Chris
    http://cfspatientadvocate.blogspot.com
  17. mojoey

    mojoey Senior Member

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    One idea is for patients in the same cities that are interested in testing to coordinate shipping together to split the costs. Still, the uncertainty with customs is an issue. Hopefully it's the exception and not the norm
  18. sphynx on roundabouts

    sphynx on roundabouts

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    I stumbled upon this website for a clinic in Grand Bahama that lists gc-maf as one of its immune therapies:
    http://immunemedicine.com/available-therapies/gcmaf/
    I wonder does any know anything about this clinic or does anyone have any experience with them? I skimmed across their patient testimonials and didn't notice anyone for someone who mentioned gc-maf but I am adrift in the fog so maybe I missed it.
    I just thought I'd share the link anyway.
  19. garcia

    garcia Aristocrat Extraordinaire

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    Joey,
    many thanks for your reply. I always learn a lot from your posts.

    You/they are right. Thanks for correcting me. It does appear that BB is the mutation for Bsm.

    I've looked into this issue today and from my (admittedly limited investigations) it does appear that what Yasko is saying may be correct. Taq and Bsm do seem to correlate with one another. In the earlier tests it seems Yasko used to test all 3 VDR genes (Fok, Taq & Bsm), but she stopped testing Bsm (my test doesn't have a Bsm result), because the Bsm result most-often follows the Taq result. In this way Yasko was able to offer another snp test for the same price.

    I've been looking at a few VDR studies online on population distributions of Taq & Bsm, and the numbers do seem to correlate (i.e. the numbers of tt would roughly equal BB, Tt would roughly equal Bb and TT would equal bb). Ok the numbers alone don't tell us if the exact same people who have tt have BB etc. (we need joint distributions for that), but then I also found this study here:
    http://www.springerlink.com/content/9hjra4g5wxd814tc/

    which looks at 3 VDR snps: Apa, Bsm, and Taq. In particular they say:
    Ignore the Aa part since we are not interested in the Apa snp. But as you can see all of the above groups are people for whom Bsm and Taq are correlated (i.e. if BB then tt, if bb then TT, if Bb then Tt). Together that accounts for (37+20+15+15+9 =) 95% of the population. i.e. in that group of 120 people 95% had Bsm and Taq correlated.

    So it does seem that what Yasko is saying is true.

    If you have an old-style Yasko test, then Bsm value is directly given. If it is -- then as Joey said you are BB which is the desired group.

    If you have a new-style Yasko test like I do, then there is no Bsm listed. However the chances are your Bsm will correlate with your Taq (which is listed).

    For example my Taq is ++ or tt, so there is a high (95%???) chance that I am Bsm BB unfortunately.

    To find out for sure I'm going to post off my test to redlabs.

    I hope all that hasn't confused anyone too much!

    garcia.
  20. mojoey

    mojoey Senior Member

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    Garcia,

    That is great stuff!! I'm hoping that Yasko is right, because a ton of us spent hundreds of dollars on her testing. If we start questioning one genotype, we'll start questioning the others. Hopefully if a few of us do the VDR test from genova or redlabs and find that the results conform to Yasko's, the rest won't need to re-test.

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