Wednesday, January 19, 2011

Who Responds to the Drug GcMAF?


After researching, W.L. Karns and I 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 Meirleirwho 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. 

22 comments:

  1. These two positions aren't exclusive.

    Fact: Differing Gene types have differing vulnerability to pathogens.

    The vulnerability is likely related at least partially, to macrophage activation. (Yamamoto)

    Perhaps VDR polymorphisms wholly or partially endow macrophage activation. (de Meirleir)

    They could easily be saying the same thing, just different perspectives.

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  2. Hello Mindy

    I wonder if you could tell me after having a look to a genetic profile they made of me 4 years ago, If in my cas I am suitable for GcMAF. I really get lost in that spreadsheet...

    http://pochoams.blogspot.com/2009/04/new-tretament-based-on-genetic-profile.html

    I tried to find out myself, but I am not able to, is too scientific...

    Thanks very much in advance

    Carlos

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  3. Carlos,
    I don't think you were tested for the VDR bsm/taq and fok SNPS. The only one I see is the VDR IVS7. According to Dr. de Meirleir, the bsm/taq and the fok SNPs in the VDR gene are key to determining how well ME/CFS patients will respond to treatment with GcMAF. However, Dr. Yamamoto disagrees: he believes that mutations in the VDR gene do not impact the response to GcMAF.

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  4. Thank you. Very helpful to see there are more treatments out there for XMRV. More things for clinical trials. Time for trials to get going!

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  5. Thanks a lot Mindy, I was tols by a friend that VDR IVS7 283, matches Bsm1, it is just a matter of nomenclature.

    Therefore, DML would think I would be a "non responder" to this one at least because I am BB, or ++, or homocigotic.

    The other one 2-Fok1 I haven´t been tested yet.

    Thanks again Mindy!

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  6. thank you, mindy. you are so important to our community. -- rivka

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  7. Hi, reading what is talking about genetics and the changes of success with cgmaf, one idea come to my mind. I’m sure someone else has had this one before and it could absolutely have no sense but I would want to know your point of view about... So, could Yasko RNAs for mutations Fok and/or Taq, and/or supplements she advices for these mutations to help to bypass this issue?… I’m apologize for my bad and poor command of English. Thank you very much.

    Ric

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  8. Anonymous,
    Some people have been greatly helped by Amy Yasko's and Rich van Konynenburg's vitamin and supplement protocols to bypass roadblocks in the methylation cycle. But for many, these supplements and vitamins alone aren't enough to get well.

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  9. Hi Mindy!. Thank you very much for your view about... I have been under a form of simplified Yasko protocol over two years with no perceptible improvements, even though I'm now less toxic that before in basis my hair analysis, so I suppose it helps to detox at least... Only when I have discontinued it I have felt my muscular/tendon/fatigue issues (Main disabilities) worse a bit. So under "wood" it seems has doing somthimg but as you say not enough to restore the health...

    What I'm referring exactly is if specifically the two Yasko RNAs (bottles with mRNAs from yeast I think, but I’m not sure) corresponding to SNPs Fok (RNA VDR Taq+) and Taq (RNA VDR Taq+) could help to surpass gcmaf genetic issue, theorically of course. May be it could help to people with bad genetic (least responsive) to respond better to cgmaf...

    Sorry I think I didn't make myself clear in my last meassage. I don’t referring at full Yasko Protocol, only to these two RNAs bottles and/or supplement she advice for surpass these SNPs issues, applied to cgmaf.

    Thank you!

    Take care!

    Ric

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  10. if i was to decide to go the GcMAF treatment i would only be treated by the world renowned inventor of this concept... i would not be evaluated by de meirlier or red labs...all these people have an interest in their so called patents to make money off cfs patients...the inventor has already expressed that their tests have no significance to whether GcMAF will work...this guy only wants the japanese genius to treat me besides there are now numerous con-artists trying to make money off this inventors theories and also there is talk that the GcMAF could be contaminated and also a fraud... my life is worth more than getting associated with any doctors or cons who know it all...i have already been in touch with this japanese genius and it will be only him and his team that treats me and no-one else...another thing some of these researchers are also trying to do is go against the japanese inventor so they can try and put their name on a new patent just by trying to change any original patents so they can even file their own patents with total mad science...anyone should listen fully to the genius not con-artists who are leaches...sincerely aidan walsh southampton, united kingdom p.s. god bless this japanese genius and his team who deserve a name change in the 'nobel prize' and the sick and dying patients who needlessly continue to die...

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  11. i have meant to say thank-you mindy for all the work you are doing to get this illness the urgency it deserves...i, at times come across in my comments as being somewhat rude but i do not believe in the xmrv hype and also the circus charades out there of the deceits trying to scam sick patients...i only believe in proven scientific theories that are replicated and facts...i cannot stand doctors who are leaches trying to falsify useless patents for profits...i will only believe in xmrv theories once they are proven and replicated...sorry in adavance but i will only speak what i feel is the truth...again thank-you...sincerely aidan walsh southampton, u.k.

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  12. just to give all of you a real idea what happens in the medical profession in the u.k. and austrailia and of course other countries as well...we all talk about deceit within the medical communities well here is a 'fistful' to think about... http://madisonmag.com.au/news/no-co...

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  13. Don't know much about science... but I know Mindy rocks!!

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  14. I fully support Aidan Walsh in his comments about cons.
    A Pharmacist

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  15. Dr Enlander responds.

    We have the utmost regard for Kenny deMeirleir . The notion that the genotype of a patient will determine the efficacy of GcMaf is not proven.
    We are proceeding with a trial of GcMaf in ME/CFS patients with the hyothesis that there is
    an immune dysfunction in the disease.

    Derek Enlander MD
    New York

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    Replies
    1. Dr.Enlander I know for a fact you and Dr Kenny deMeirleir have done enormous things to help patients get treatments and answers to this horrendous illness but lives continue to be lost from neglect and lack of funding and the British phyco babble must stop and serious funded research must be done now...If GCMAF is a viable treatment then it must be given the green light immediately to those who suffer and are dieing...There should be no politics about it and it should be entirely up to the patients themselves whether they decide to go this route...Every avenue patients go down to find a viable treatment is always stalled by either the phycological camps or governments regulations...We as patients are not going to sit back anymore waiting on these people to choose our destinies and we are all fed up for the decades of neglect...To think that if an answer is found tomorrow we are not going to walk away from this neglect because we will seek full complete public and criminal inquiries and a high majority of us will demand full monetary compensations for this total abuse and we will find answers as to whether our illness came from vaccines or criminal wrong doing...I know for a fact there are people within the U.S. Justice Dept. who are not happy about all of this and there will be things done about this so anyone thinking in their right minds that this abuse is going away they will get a huge surprise...Patients want their lives back and we want the b.s. to stop now...We demand millions now in emergency funding or lawsuits will start to begin...Lawyers are very excited to take these cases to world courts...If funding does not happen now then we will let the courts decide our fate not phycological British madness...

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  16. Hi- My Lyme doctor would like to place me on this as soon as possible. I was first diagnosed w/ CFIDS/ME and my new MD says I have a huge viral component. I read that the GcMAF works well in conjuction w/kutapresson. Do I...should I ask my LLMD to prescribe this as well? or will it work just as well w/o it.
    FYI: who are ppl ordering this through. I have tried one company and have had much difficulty. It has been draining and because of the unproffesionalism, I am afraid to do a bank transfer in lieu of something going bad and not receiving my money back. The first one was undeliverable because UPS deemed it damaged. (it was leeking and the bottle was broken).
    I am torn. I want this badly but am wondering who else is selling it. My LLMD will not order it for me, stating..."we are not set up yet for this". But has been asking so many of his patients to order it asap.
    Confused but want to be so healthy! I have so ill for years now and multiple issues now.
    Thank you,

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  17. I recently met with Dr. John Chia, one of the doctors on the West Coast that developed Equilbrant, the chinese herb for treating virus's, expressed that once I am in condition for giving GCMAF a try he would take care of the ordering and injections for me. I would not be confident in placing an order with the little experience I have had ordering on line a product of it's nature. I personally would only trust a doctor I have high regards for to do this procedure. Dr. Chia mentioned Dr, Erlander as a good source on the East coast. I am in the process of building my immune system before going forward, as I also have multiple issues to deal with relating to very high virus count. Best of luck, warmly, Lynn

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  18. Hi,
    The gene chart looks interesting. I dont really know how to read it, and make use of it, but would like to get there.

    I just got my results from 23andMe and want to make some use of them. Is anyone able to help?

    Thanks
    Joel

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  19. Has there been any follow-up response from deMeirleir or Enlander with regard to their studies? DeMeirleir said he would have an answer in six months and I wouldn't mind hearing more about Enlander's study too. Thanks.

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  20. Had two doses of Gc-MAF intravenously in August and then 5 weeks later in September of 2011, I had blood-test confirmed HHV-6, Coxsackie B, and EBV, equivocal for mycoplasma pneumoniae, and symptomatic evidence of Lyme inactive or gone, and continuing Bartonella and lesser Babesia symptoms. I had done so much to get better but was unable to get there. The first shot of Gc-MAF I was living life again within a week. The second shot - I have gone through various stages of immune activation - the system turning on, stumbling, cranking back up, having die off and then continuing on my merry way, just stronger and more stable. I only had to be careful about my diet. I have been well ever since. I just got my 23andMe results, and have the VDR-Taq A/A, I do not have any info on VDR-Fok. I have not updated my blog in a long time but it is www.lymejourneykc.wordpress.com and I can share my methylation results from geneticgenie with the author of this blog post if interested.

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  21. My name is Blake Miller and i am an 18yr old student at Mountain View in Bend Oregon. I was wondering if anybody has ever heard of research involving the dream theory Activation Synthesis and if it has any correlation to how a CFIDS patients brain works. My mom and I both have it. We also both have noticed a lack of dreams leading up to a day of greater sickness and a rare night with dreams leading up to better health and a clearer mind. If youve heard anything shoot me an email. bubuliciousblake@gmail.com

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