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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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    wow. what a thread this is! i wish diesel, sergio and sushi -- and the PWC from Malta! -- well in their KDM visits!! are all of you going specifically because you hope to be treated with GcMAF?

    chris: what do you mean that you think GcMaf is in the US already?

    i just can't follow all the specifics of the genetic talk. is there anyone who feels inspired to tell me if i am or am not a candidate for GcMaf? here are my yakso test results from 3 yrs ago. -- warmly, rivka

    +/-
    VDR Fok

    -/-
    VDR Taq
  2. serg1942

    serg1942 Senior Member

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    Hi Rivka,

    wow. what a thread this is! i wish diesel, sergio and sushi -- and the PWC from Malta! -- well in their KDM visits!! are all of you going specifically because you hope to be treated with GcMAF?

    Ummm.. For me GcMAF is a big hope, but its result is uncertain, and I don't have a good genetics either... I am going to be treated by KDM, because I am XMRV+, I need a doctor, and he, even if GcMAF doesn't work, will be in the cutting edge of treatments...Also, I am not up to following the way of ARVs, and it seems he is not either, so this is another strong reason.


    As far as I understand:

    The best combination here would be -/- You are +/-, so it's good

    Ok, according to what the other fellows have been posting, it seems that Taq is usually similar to bsm, that is the polymorphism that was studied (together with Fok), in the GcMAF paper.

    So, if we assume that in your case Taq=Bsm, then your Bsm would be -/-, that is the best combination you can have.

    Is short, the best combination would be:

    Bsm -/- and Fok -/-, and you are Bsm -/- and Fok +/-. So you have only one allele different from the combination that worked the best in the paper.

    So, assuming that your Bsm is the same as your Taq (there seems to be over a 90% the possibilities for this to be true), and that Yasko's test is reliable, then you would be a good candidate for GcMAF...:victory:

    Besotes,
    Sergio
  3. RivkaRivka

    RivkaRivka Senior Member

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    thank you, dear sergio!!!!
  4. consuegra

    consuegra

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    Rivka,

    What I meant is that I believe it can be shipped or brought to the United States now. For instance Cheney seems to have it. It was made clear to me that it could be sent to me, if I wanted to do it.

    Chris

    http://cfspatientadvocate.blogspot.com
  5. RivkaRivka

    RivkaRivka Senior Member

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    thanks, chris! can you give us more details or would that compromise your source? i'm wondering if you are saying that it is KDM's office that made it clear to you that it could be sent to you. or if it was cheney's office?

    and i wonder if one has to see KDM or cheney first, before being eligible for a shipment. if not, i expect this new info that we can order it in the US without having to go to europe or cheney will see a lot of patients willing to try GcMAF.

    separately, someone told me that cheney and KDM are using two different version of the GcMAF. i have no way to verify this.
  6. mojoey

    mojoey Senior Member

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    Just wanted to confirm what Rivka said about Cheney and KDM using different versions of the GcMaf. Perhaps that's where the confusion is coming from. Cheney is using a version that is being sold commercially by BGLI in Holland. I am fairly certain KDM's version is not on the open market.
  7. Crappy

    Crappy Senior Member

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    Just wanted to let you know, I have little confidence in the accuracy of my post.

    I am curious too. I entered my post hoping to get a reply from someone who has a Yasko test, and a Red Labs or VIP test, in hand to compare the two. Hoping they could post, to help clarify for all of us who have a Yasko test, and are sitting at our computers hoping and wishing. I think all of us who have the Yasko test in hand would like to know if we can use that knowledge instead of waiting yet again.

    I assume by the silence so far, no one has both tests. I don't want my post to be responsible for misleading anyone. I considered removing it, but I thought as someone does get the information, they could help clarify.
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Agreed, Joey, anyway re: Cheney's source = BGLI. He got it shipped to his office without a problem but some patients had trouble getting it through to their private addresses. He is trying to untangle that problem. I know KDM ships his version frozen to patients in some European countries, but don't know about the US. I'd try to bring it back with me to the States--frozen.

    Sushi
  9. RivkaRivka

    RivkaRivka Senior Member

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    thanks to the trailblazers who are trying this treatment for us all!

    and thanks to the "expert patient" researchers who are finding info and posting it here for us all.

    i feel very grateful to this community.

    p.s. is anyone who is doing the GcMaf with cheney posting about it anywhere, or is it like the stem cells info, and embargoed? does anyone know how long cheney has been doing it? it is just an 18 week treatment, right, if the injections are weekly? or is it longer if it is done sublinqually?
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Cheney is starting "patient trials" early next year. I think he has only given it to a couple people so far but has made the info about how to take it and where to get it available to his patients who want to start it on their own. I don't know anyone (of his group) who has started yet. There have been some customs problems.

    Sushi
  11. Berthe

    Berthe Senior Member

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    Are you sure KDM is shipping his own Gc.Maf to other countries. I've heard he initially got it from the States, but now he's making it in his own labs. A friend of mine is also positive and a patient of KDM and on Gc.Maf. Because of the two hour travel every week to his office, just for the injection, she wondered if she could take it home and let her GP give it to her. KDM didn't agree. I will see her tomorrow and would love to know if people actually get the Gc.Maf out of the office? I would spare her so much time and energy.
    I thought KDM perhaps had his own formula of Gc.Maf and didn't want to get out of his office to be seen or tested by someone else. Would make sense.

    Love,
    Berthe
  12. Ronan

    Ronan Senior Member

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    Does anyone know how many weeks KDM prescribes for GcMAF?
  13. KHeckenlively

    KHeckenlively

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    VDR Results for Autistic Child

    Dear Group:

    My daughter's results from the Yasko test are as follows:

    VDR Bsm/TAQ -/-
    VDR Fok -/-
    VDR Taq -/-

    As I read this thread it seems she would be ideal for GcMaf. Should I bring up with my daughter's very open-minded doctor?

    All the best,
    Kent Heckenlively
  14. RivkaRivka

    RivkaRivka Senior Member

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    Hi Kent,

    Welcome to the forum!

    We all try and try to bring up new treatment options to our doctors all the time. What I have found is that if i raise some new treatment idea THREE time with my doctor, over 3 visits, by the 3rd or 4th visit he is interested in trying it.

    good luck!

    p.s. it is still not clear to me how we'd get the GcMaf in the US tho.
  15. Daffodil

    Daffodil Senior Member

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  16. mojoey

    mojoey Senior Member

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    Hey Daffodil,

    Yeah this place was mentioned awhile back. I heard about a doctor with cancer that went there, got sicker, then gave David's gcmaf (gcmaf.eu) a shot, a few lymphomas started growing rapidly during treatment, and quit the program altogether. That's all I know.
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I wrote to them to ask if they are treating CFS with GcMAF, and if so with what results. I also asked what their source of GcMAF is. So far, no reply.

    Sushi
  18. Crappy

    Crappy Senior Member

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    I thought I would write a bit; concerning GcMAF and the current anticipation surrounding it. I think there are several here that have been down the same long road as I have.

    Many of us have seen this cycle before, and I don’t mean to sound pessimistic; but I think cautious optimism is in order. I have been sick for ten years. I have read the works of many Drs. including Teitelbaum and Shoemaker. I have been to Fibro and Fatigue Centers and many other treatment specialists, as it sounds many of you have been.

    Dr. Shoemaker classifies approx. 70% of the public as having a normal immune system and able to defend themselves against given assaults. Dr. Yasko has something similar. Now it has been narrowed a bit more, down to VDR genotype. Just guessing I would say if you are unlucky enough to be here, you likely won’t be cured easily; your genetics got you here. GcMAF initially will likely only work for those who are the next level of genetic defect down. Hopefully they begin to understand it’s mode of action and eventually can make it more effective for each correlatingly weaker genotype.

    It’s merely Natural Selection at work, the strong survive.

    When I learned of GcMAF I was so hopeful, like a thousand times before; like everyone here has been before. I don’t know how much money I have lost on the latest, greatest treatment. Worse than that, how many times I have gotten ecstatic about a cure sold to me; only to find, it really wasn’t a cure at all. I was just gullible; again.

    I want GcMAF to be “The Cure” for all of us, but we have to admit, the odds are small. I do believe understanding is progressing, and VDR seems to be a significant influence. Maybe it is the “Cure”, maybe it is a step to the “Cure”, which is more than we had yesterday. Maybe it’s not the “Cure” though. Our desperation motivates us to,”jump first, and ask questions later”; and all that actually happens is, we get wiser and poorer; less able to afford the real cure, if it ever comes. But sometimes contributing to research is enough to motivate us to hang on another day or week. I know I have to try things just to feel like I am making some kind of positive progress.

    We know of many things that don’t work. This illness has confounded patients and Drs. alike for entire lifetimes. It seems it is extremely complex, and not only avoids definition, but evades treatment too. After twenty-odd years the cause is still debatable; and not one Dr. can claim success, though they scramble to get to that Golden Egg. (I have a vision of these Drs. leaning over their floor safe at night, salivating at the thought of being able to charge for fixing us all. Some have done quite well for just listening and treating us like we are ill, regardless of what they truly believe.)

    We know Mitochondria are damaged, the Krebs Cycle is shunted, the Methyl Cycle is defective, Immunity is hampered, Digestion is poor, and forget about the Nervous System. My point is; there is likely no Silver Bullet, even though we all desperately want one. Realistically this illness will have to have multiple treatments based on the patients’ level of impairment and what damage they have sustained; not to mention repairing the initial invader or offender that precipitated the cascade.

    The best part for me is to hope I am wrong, and there is a pill or injection out next month to cure us all.
  19. serg1942

    serg1942 Senior Member

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    You know what Crappy, I endorse every word of your message...I just need to feel I am doing something...Maybe GcMAF works, maybe not. Maybe XMRV is the answer, maybe not. It is true that it would explain everything from a theoretic point of view. I just cling to hope that this is the one...If it's not, "life" (or whatever this is) continues...Sometime, some "gcMAF", or some "XMRV" or some whatever, eventually must be the answer...

    I am 100% willing to be a guinea pig again, possibly gullible, but at least, trying...

    (I think I shouldn't write posts when I feel crappy! Anyway, this is what I think right now. I am sure tomorrow I will see everything with more optimism...)

    Sergio
  20. dannybex

    dannybex Senior Member

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    I totally agree with this paragraph. That's why I think CFS will always be difficult to treat, XMRV or no XMRV.

    We all have different genetics, different infections, different stressors, triggers, different methylation problems, different causes, etc..

    At the same time, we've been conditioned by the media and culture to expect that 'they' will come up with 'a pill' that will fix everything.

    I'm trying...trying...not to hold my breath, waiting for that pill.

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