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Gcmaf-reactions and side effects

Discussion in 'GcMAF' started by Samina, Jul 27, 2011.

  1. Clodomir

    Clodomir In hibernation mood

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    Hi Daffodil,

    "A lot better": not yet, but my nagalase level was at 2.3 (august), then 1.6 (november) and now since a month at 0.76.
    KDM tell me that when I will be at 0.75, he think that everything, who was wrong before (perforine, NK cells, IgG3, etc...), will change and return to "normality" but slowly.
    Follow his experience, you can't have changes or feel changes until you arrive at this level. Now that I am at 0,75 or less, I feel that something is changing and I feel better, but I think it gone take a few month to regularize the situation.
    Following my husband, I am better, less confuse, have more energy, etc...
    End may, I will probably do new analyses, to see if it "works".
    GcMaf treatment is a long term treatment.
    I will give you more information in a few month.

    Have a nice day

    Clodomir
     
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Clodomir,

    Glad you are experiencing these changes. My lab tests have largely normalized. I don't have a recent nagalase reading--I need to get one!

    If you sign into chat, it will automatically translate you into English which might make chat fun for you!

    Best wishes,
    Sushi
     
  3. Daffodil

    Daffodil Senior Member

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    thanks guys, this is very good news.

    wonder whats with the hair loss!?
     
  4. Overstressed

    Overstressed Senior Member

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    Hi Daffodil,

    I had this week also itchy scalp, hair loss, limp hair. I took vitamin-C and it helped me. I remember once I had too much zinc when this manifested. I don't know however if the vitamin-c is just a coincidence.

    Take care,
    OS.
     
  5. loispix

    loispix

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    I started GcMAF & Kapupressin injections on Feb. 8. At the same time I started using far-infrared sauna (Dr. Myhill suggested it for a get a cardio workout). I have had no negative side effects except an occasional black & blue. I have had very few side effects from most drugs. Took Valcyte for 6 months & no side effect good or bad.

    However, about the first of April I did have about 12 really good days in a row! I even got my sparkle back which is good to know that the real me is still there somewhere. But, sadly,on day 13 she was gone along with all my energy.

    A few years ago I took a series of gama globublin injections and I got a real nasty cold which was a sign that I had a working immune system! Since I got ME/CFS in Feb. 2000 that has been my only cold and no flues.
     
  6. Daffodil

    Daffodil Senior Member

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    thanks OS.

    hi lois. i started gcmaf on feb 14th. 12 good days in a row sounds like heaven! i also had a cold last month and i cannot remember the last time i had one of those. i got sick in 93.

    i assume you are seeing dr. enlander?

    xoxoxo
     
  7. Forebearance

    Forebearance Senior Member

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    Side effects from GcMAF

    I have had more back and kidney pain from taking GcMAF, as well as burning skin pain. But I recognize these symptoms as things that happen to me when I am exposed to mold toxins, so I concluded that the GcMAF was making my reactivity to mold toxins greater.

    Lately I have been increasing my dose of Vitamin D, and I've been getting pretty bad joint pain in one knee. It feels like it might be arthritis. ??? Maybe I should cut back on the D, according to what you guys are saying.

    Fore
     
  8. Recovery Soon

    Recovery Soon Senior Member

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    I just took my first dose last night (with Dr. Enlander) - .250 ML

    Feeling pretty bad side effects - intense anxiety, dizzyness earlier in the day. (very unusual for me)

    Morning started out great - then around 11:30 massive increase in tired, weird feelings.

    Now- still tired- strange feelings throughout body.

    Not sure if this is good sign, bad sign, or what.

    I am a functional PWCS- work full-time...and thought this might get my immune system over the hump.

    Now I don't know what's going on.
     
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi recovery soon,

    I guess if you are taking it with Enlander you are taking 25 ng? I take mine at night, before bed so that if there were to be any side-effects, I'd sleep thru them. You might want to try that next time.

    Best wishes,
    Sushi
     
  10. Recovery Soon

    Recovery Soon Senior Member

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    Thanks Sushi.

    Yes - 25. I took mine yesterday evening- slept fine- woke up an hour early (5AM) feeling quite well.


    Then at 11AM- roughly 18 hours after the injection- it hit like a ton a bricks- and still isn't right.


    Not sure about the risk/reward ratio. Let's see how this week goes.
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I usually need an hour's less sleep too after a GcMAF injection. I had delayed reactions in the first months but don't get any side effects any more.

    You could also consider taking a lower dose next time, if this discomfort goes on too long. Everyone seems to have their own tolerance level.

    Best,
    Sushi
     
  12. Recovery Soon

    Recovery Soon Senior Member

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    I didn't need any sleep after the injection. I felt great for 18 hours then the reaction came.

     
  13. Daffodil

    Daffodil Senior Member

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    i always fall asleep a few hours after the injection.
     
  14. CindyWillis

    CindyWillis Senior Member

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    I have had hairloss from it but had a lot of hair to begin with so just have ignored it.

     
  15. Recovery Soon

    Recovery Soon Senior Member

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    hairloss? I'm really rethinking this whole venture.

    I'm not seeing a reasonable reward for all the risk. I might sit out til more advances come. I empathize that some people are in pretty dire straights- and I understand going for it no matter what- but I'm not sure for me the potential marginal improvement possibility is worth the pounding this seems to give the body.
     
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    No pounding for me and no hair loss!

    Sushi
     
  17. Recovery Soon

    Recovery Soon Senior Member

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    good to hear!
     
  18. CindyWillis

    CindyWillis Senior Member

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    GCMAF is the best thing that ever happened to my chronic fatigue. I am with Dr. Enlander and am taking 80 ng now and am well enough that I am 90% well now. A few strands of hair are nothing compared to getting your health back. Dr. Enlander has many patients that are 100% well and medicine free after taking GCMAF to 100 ng and then coming down off it over time. The longest amount of time of CFS was 14 years so that is encouraging. I asked him the percentage chance I had of getting 100% well and never needing medicine again and he said 100%. After just 2.5 months, I am way closer to being 100% well than I ever was.

     
  19. Recovery Soon

    Recovery Soon Senior Member

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    I am extremely happy for your success and wish you continued improvement...but Dr. Enlander is apparently telling different stories to different patients. He emphatically told me on Tuesday that this is not a cure - and that yes, there are some patients who have made impressive improvements- but none are symptom free- and almost none even close to that mark. This also was confirmed by both Laura and Michelle. What they called this was a very promising treatment that seems to help about 50% of patients reach a higher level of functionality. That in of itself is very exciting. But promising anyone a 100% chance of cure would be just plain irresponsible- and Dr. Enlander is pretty measured.

    Only one of his patients got to a point where they felt well enough to discontinue treatment- and apparently maintained his improvements (though, not cured).

    I took only one dose- and it's been my worst week in years. I'm glad to hear there are others who feel great. I could be the exception- but something in my body is very wrong at the moment.
     
    garcia and taniaaust1 like this.
  20. Daffodil

    Daffodil Senior Member

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    just want to make clear that GcMAF HAS definitely helped me. yes, most of my days are still bad...and if i inject a little too much, VERY bad....but overall, i am better. hard to put into words..i just know i am better. at the very least, the illness is no longer progressing.

    keep in mind, i have been sick 20 yrs and the last 7 yrs i was SEVERE. almost dead i would say...and i've only done 9 shots of the GcMaf so far.

    you cannot take a too-large dose, have a very bad experience, and make any judgements based on that. you have to start with ultra-low doses. the docs are figuring that out now.

    i also dont think we will ever be able to discontinue treatment until a LOT more is known about this disease! maybe we will need maintenance doses.

    xoxo
     
    garcia likes this.

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