The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.
  1. Spinney Lainey

    Spinney Lainey Senior Member

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    Does anyone take this? If so, where do you get it from, how much did it cost and has it helped?
     
    Last edited: Aug 28, 2014
  2. Thinktank

    Thinktank Senior Member

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    I do. My LLMD prescribed it to me because my nagalase level was elevated and macrophage activity too low.
    After 6 months low dose GcMAF @ 25ng subcutane weekly my nagalase has returned to normal and macrophage activity to a healthy state.
     
    Sushi likes this.
  3. Spinney Lainey

    Spinney Lainey Senior Member

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    What's LLMD? Do you have to pay for it? Have you felt any effects on your immune system/health?
     
  4. globalpilot

    globalpilot Senior Member

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    And do you feel better ...................?
     
    Spinney Lainey likes this.
  5. Daffodil

    Daffodil Senior Member

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    LLMD is Lyme Literate Medical Doctor.

    I took GcMAF. It helped somewhat. I got it from Dr. Enlander in NYC but there are many places to get it, even without prescription, and large variation in cost.

    Some sources are:

    Dr. Kenny DeMeirleir (I think you have to be a patient)
    Dr. Jeff Bradstreet (Autism specialist who also treats other things)
    Dr. Derek Enlander (CFS Specialist)
    GcMAF.eu (Website ordering)
    etc.

    There are also GcMAF Yogurts you can take.
     
  6. Thinktank

    Thinktank Senior Member

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    @globalpilot and @spineylaney, that's hard to say, i'm on a very intensive protocol so i can't really tell which medicine does what.
    What i can say is that i definately feel worse without my weekly shot of GcMAF. My LLMD told me to stop using it because the labvalues returned to a healthy range so i did, 2 weeks later blisters started to appear around my lips, joints started to ache more and the feverish feeling returned a bit. I decided to continue GcMAf and 2 days later i was fine. Coincidence or not? I will try to hold off the GcmAf again in a few weeks to see what will happen.

    I got it from Gcmaf.eu by the way. I divided 1 vial over 38 syringes, each containing 25ng gcmaf. When low dosed it's a very affordable product.
     
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  7. Sushi

    Sushi Senior Member Albuquerque

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    @Spinney Lainey

    GcMAF has helped me a lot and, like Thinktank, my nagalase values slowly returned to normal. If you have high levels of inflammation though, particularly IL 8) it might be hard to tolerate. It costs me about 30 euros per month.

    Sushi
     
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  8. Thinktank

    Thinktank Senior Member

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    @Sushi, my IL-8 was 1000+ before treatment and 500 after 6 months low dose GcMAF. I asked our doc about the inflammatory factor of GcMAF but he told me that's unlikely because the dose is very low. Higher doses do cause inflammation. Someone told me KDM's version of GcMAF usually causes more inflammation than the one from gcmaf.eu, don't know if that's true?

    P.s. Are you still on GcMAF? Even while your nagalase levels are in the normal range? Have you been tested for maacrophage activity?
     
  9. Spinney Lainey

    Spinney Lainey Senior Member

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    4 of my inflammatory markers are raised, including IL 8, so may not be good. @Sushi - does KDM prescribe Ampligen, or something else?
     
  10. Sushi

    Sushi Senior Member Albuquerque

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    Not sure what you mean by "something else"? He prescribes medication that targets whatever one's test results show. Years ago he prescribed Ampligen but there were complications with the company as he is in Europe.

    Sushi
     
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  11. Sushi

    Sushi Senior Member Albuquerque

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    For me GcMAF raised my IL 8 though I have not had it tested for a while so I don't know what it is now. I first took 50 ngs--too much, and I had to stop for a couple of months due to difficult inflammatory symptoms. Since then I have been taking about 20 ngs--and yes, he said to continue even after my nagalase was normal if GcMAF continued to help me.

    I don't think my macrophage activity was tested in the last round of tests.

    Sushi
     
  12. Charles555nc

    Charles555nc Senior Member

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    If 0 was no improvement and 10 was a cure, what amount did GcMAF help you?
     
  13. Sushi

    Sushi Senior Member Albuquerque

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    I was doing a number of treatments at the same time so I can't really guess percentages--I can only say that GcMAF helped markedly.

    Sushi
     

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