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GcMAF worth trying?

Discussion in 'GcMAF' started by deleder2k, Jun 18, 2014.

  1. deleder2k

    deleder2k Senior Member

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    I have been suffering from M.E for 3 years. Tried B12 shots, LDN, magnesium and other stuff with no effect. I'm worse now that ever, and considering my options. My doctor is researching into the field of immunglobulines, but I have no answer yet that I will get IVIG from my GP.

    Is GcMAF worth trying? Can i try it on my own without a doctor? From what I understand its possible to buy MAFActive which is just a spray. Is this just as good as IV?
     
    NK17 likes this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    There are quite a few threads on people's experience with GcMAF. You can find them with a Google Site Search. The spray is about 3 nanograms a dose. Injecting you can choose a higher dose (usually 20 -25). I am not sure whether there is much experience with the spray yet.

    GcMAF is not given IV, but simple injections that you can do at home. Some suppliers let you buy directly, some require a script.

    Best wishes,
    Sushi
     
  3. deleder2k

    deleder2k Senior Member

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    I have read most of the experiences here with it, but its hard getting an understanding if its worth trying or not. Is there no research done on this at all? If the injections contain 20-25 nano grams and the spray is 3, shouldn't that make a huge difference in terms of the effect? Anyone tried both?
     
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Dose is very important with GcMAF. Patients take anywhere between about 5 ngs to 100 ngs. Those who can tolerate higher doses seem to get better results--but like everything else, there is no real rule of thumb.

    Sushi
     
  5. Thomas

    Thomas

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    It seems to work well for some and not for others. It made me worse even at tiny doses. But that doesn't mean it won't help you. Don't get your hopes up though...most people I know that tried it (not here on PR) did poorly on it.

    I've had ME for just over 2.5 years and am worse than ever also. It might just be the illness despite our interventions.....at least until we find one or some that actually work.
     
  6. Iquitos

    Iquitos Senior Member

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    It did nothing for me except deplete my bank account.
     
    Tito likes this.
  7. deleder2k

    deleder2k Senior Member

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    Damn, i don't want to deplete my bank account. Maybe I'll wait for the gammaglobulins instead. If my GP agree I can get 5 ml once a week for $400 a year.
     
    Tito likes this.
  8. xrunner

    xrunner Senior Member

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    Yes if your Nagalase is elevated. To know this you need to test for it.
    However, your improvements will be dependent more on how your vitamin d metabolism will respond to Gcmaf rather than movements in Nagalase.
    Regarding the form of Gcmaf, the probiotic version has a more comprehensive action than any of the others, that is according to Dr Cheney's own research, which you can look up. It will not only reduce your Nagalase but help your gut flora, overall immunity and quality of sleep. It did just that for me.

    Just to add that B12 won't lift a partial methylation block by itself, for that the simplified methylation protocol is likely to produce better results. Again you can test for it and see if you need that.
     
    NK17 likes this.
  9. Daffodil

    Daffodil Senior Member

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    i think gcmaf can help if you give it time. it is not a cure
     
  10. globalpilot

    globalpilot Senior Member

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    There is someone on this forum who has reported remarkable improvements with GCMAF probiotic - Mellster I beleive it is.
     
  11. GcMAF Australia

    GcMAF Australia Senior Member

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    I thing that is highly relevant here.
    Some practioners are reporting that over 90% of CFS people have Lyme Disease infections.
    There have been some good reports about GcMAF in Britain, with 50% showing good improvement If you pm me I can give you the persons address who is studying it.
    Also some people have improved dramatically in clinics in Germany
     
  12. ukxmrv

    ukxmrv Senior Member

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    I did better on MAF314 (one of the yoghurt ones) than I ever did on Immunoglobulins (had IVIG).

    The cost that your consultant is offering for the IG ones sounds worth a try though.

    Sometimes it comes down to trying things that we can get easily and can afford first.

    It's the cost of the MAF314 that is currently stopping me from trying it again.
     
    NK17 likes this.
  13. deleder2k

    deleder2k Senior Member

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    Yeh, I'll think I will try that first if MAD314 is expensive. I just ordered 5,000 mcg sublingual B12, some zinc, magnesium, and d-ribose. However, I think I will wait until the end of August before trying IVIG to see if I have been selected for the upcoming Rituximab study. You're not eligible if you're on other stuff that suddenly can make you better, and I am pretty sure that IVIG is one of those "things".
     
    NK17 likes this.
  14. Charles555nc

    Charles555nc Senior Member

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    Im trying 2000iu vitamin D, high dose molybendum, green tea/echineacha tea, and a low fat diet. Seems to help alot but so far isnt a cure by any means. Occasional melatonin use.

    Saw big improvement in mental symptoms with Isentress, but was not a cure.

    Tindamax helps as well to keep me from the horrible end of symptoms.

    -Almost forgot, one gram glutamine once a month, made a big difference. But more than a tiny dose to prevent deficiency fuels infections, so be careful.
     
    Last edited: Aug 14, 2014
  15. Sasha

    Sasha Fine, thank you

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    I tried the probiotic GcMAF to no effect (good or bad).

    It's worth bearing in mind that anyone here on Phoenix Rising is likely to be someone for whom things haven't worked, though. Those for whom they did work well may have had enough recovery to have left the forum and to be getting on with their new life! We're not a random sample.
     
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