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a few questions on Gcmaf

Discussion in 'GcMAF' started by suzanne, Jun 7, 2012.

  1. suzanne

    suzanne Senior Member

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    Hi guys,
    I posted a few questions earlier but seem to not be able to find the post- aologies if this is a repeat.

    I am thinking f giving GcMAF a try. I have a VDR genetic result of VDR Taq ++ and VDR fok +- I am not sure if the VDR genetics are relevant.

    I did the marshal protocol for 3 years and it was the only thing that has ever made a vast difference to how I feel. However, it stopped workig after 3 years ( it has been 2 1/2years since I took the benicar prescribed as part of the MP)

    2 days ago- in desperation ( I suffer from rolling migraines almost every day), I decided to give the benicar another try...so as i say, 2+ years since I have taken it and wow- it has made a big difference in how I feel and this is ony just starting into day 3. BTW, I am taking a total dose of 120mg a day and this is in a split dose 20mg 6 times a day.

    So, I know that benicar works by both providing palliation to the inflammation and it is also an agonist for VDR and in this way also modulates the immune system. I think it works by lowering 125 D levels. Whilst on it you are advised to not supplement D, keep away from high dose vi D food and keep sun exposure to a minimium

    Based on my response to benicar, I would like to know what any thinks of me trying GcMAF- does this decrease 125 D? Can I take benicar at the same time as GcMAF? It may help with the suppression of some of my inflammation?

    I will sign of now and see if any one has any ideas on this?

    cheers
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Do you have a doctor who is experienced with GcMAF guiding you on these questions? GcMAF is tricky for some conditions and I personally would not want to take it without supervision.

    Oh, you can find your posts by clicking on your name at the top and going to your profile and then your posts.

    Best wishes,
    Sushi
  3. GcMAF Australia

    GcMAF Australia Senior Member

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    From my reading GcMAf should balance the vitamin D 1,25 and should reduce vitamin D 1,25 Sushi may be able to comment on this
    All the best
    GcMAF
  4. alice

    alice Senior Member

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    A new question for this thread.

    My doctor has some patients who do the GcMaf sublinqually. He said that some patients seem to tolerate this route better than subq. I seem to react 'over the top' with almost everything and am a little leery of starting GccMaf in any form. Anyone here take it sublingual? I think he said 10-20 nanograms if done SL - not sure..

    Incidentally my VDR genetic results were: +/+ VDR Fok - (supposedly most sensitive).
    and +/+ VDR Taq. I don't know about this. I've tried to understand how to interpret these, but gave up since there are different explanations, and I understand very little about it anyway. Also, like Suzanne said they may not be relevant.

    My Negalase is very high at 2.90. My Vit. D 25-hyroxy is low at 29. I think Klinghardt says it should be 40.

    Alice
  5. alice

    alice Senior Member

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    Suzanne - I take Cozaar 25 mg qd for inflammation. I think Benicar and Cozaar are similar CV drugs.
    Except my doctor did not tell me to discontinue Vit D supplementation and to stay out of the sun. I cannot tolerate any large dose of Vit D, so I take what I can tolerate(about 1000 IU/day - including multi's) because I start really hurting like a Herxheimer reaction. Doctor says it is an immune reaction. I guess I will have to bring up this topic with my doctor again.
  6. Ema

    Ema Senior Member

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    Does anyone know which SNPs are for the VDR taq and fok on the 23andme panel? The raw data returned a page full of results...Thanks!
  7. GcMAF Australia

    GcMAF Australia Senior Member

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    I think I saw that the VDR pheotypes are irrelevant. The published science papers do not indicate a reason for any effect. Of course that is different to what people find in practise. FokI is rs2228570 or possibly rs10735810.
    TaqI is rs731236. The optimal vitamin D 25OH level is still being worked out. I suspect that is 29 ng (per something) and not nmol per litre. 30 ng per? at the moment is regarded by many as Ok but now some doctors are going for 40.
    There is a small effect of the - Fok and - Taq with lower vitamin D levels about 25 reduction. These things of course are affacted by sun exposure
    This exerpt is from http://www.cfscentral.com
    Who Responds to the Drug GcMAF?



    After researching, W.L. Karns and ... have come to the conclusion that autism expert Dr. Amy Yasko is incorrect in saying that the G allele in the bsm/taq SNP (single nucleotide polymorphism) of the Vitamin D Receptor gene is the mutation. Several Pubmed studies indicate that the more common G allele is the ancestral allele and the wild type—not the mutation.
    Thus, in our estimation, patients with the G allele in the bsm/taq SNP as well as the wild type C allele in the fok SNP of the Vitamin D Receptor are the ones that Belgium ME/CFS physician Kenny de Meirleir believes are most responsive to the drug GcMAF. Patients with a double A allele in the bsm/taq and a double T allele in the fok would be least responsive, and those who are heterogeneous would fall in the middle. The Gene Chart has been changed to reflect this.
    It makes a certain amount of sense that the SNPs most likely to respond to a drug that affects the Vitamin D Receptor are the wild types in that receptor, not the mutations.
    de Meirleir and Yamamoto disagree
    CFS Central contacted de Meirleir by email to confirm, but he didn’t respond to this particular question.

    However, Dr. Nobuto Yamamoto, the world’s foremost expert on GcMAF, says in his experience it makes absolutely no difference whether patients have mutations in these two SNPS. “The efficacy of GcMAF depends on the capability of the patient’s macrophages [to be] activated,” he explained in an email. “Macrophage activation [has] nothing to do with VDR polymorphism.” In fact, he wrote, an inability to respond to GcMAF would be fatal.
    GcMAF works by turning on white blood cells called macrophages, which gobble up pathogens and activate other immune cells. In the large number of patients who've been treated with GcMAF, Yamamoto has never observed an inability to respond to the medication.
    “Since the molecular structure of [the drug] GcMAF is identical to that of the human MAF [Macrophage Activating Factor], it seems unlikely that subjects harboring the genotype ff/BB cannot be activated by MAF,” he explained. “These conclusions were made by the response of human peripheral blood mononuclear cells (PBMCs), instead of monocytes alone, to GcMAF…. Unfortunately, people tend to use the same idea of the VDR polymorphism dependency for the efficacy of GcMAF (activation).”
    When asked to comment on Yamamoto’s position, Kenny de Meirleir—who has reported that 80 percent of ME/CFS patients have significantly improved on GcMAF in concert with the antiviral Nexavir (Kutapressin)—wrote to CFS Central, “I will be able to give you an answer on this in a few months when statistics can be made on our experience. But at first glance it seems that I have to [disagree] with Dr Yamamoto.”
    So the jury’s still out on whether certain SNPs in the Vitamin D Receptor gene influence the efficacy of the drug GcMAF in treating ME/CFS—or for that matter, any other diseases.
    end of quote
    Regards
    GcMAF
  8. garcia

    garcia Aristocrat Extraordinaire

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    If you read back through people's experiences and/or look on the gcmaf googledocs spreadsheet that Joey started, you will find that VDR seems to have no bearing on how people react to GcMAF. Yamamoto himself said that this was the case.

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