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GcMAF Poll

Discussion in 'GcMAF' started by Cort, Jan 20, 2011.

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I've tested positive for XMRV; my response to GcMAF has been

  1. Incredible! I feel like a new man or woman

    3 vote(s)
    20.0%
  2. Much Better - I feel significantly better

    3 vote(s)
    20.0%
  3. Somewhat Better - it feel mildly better

    6 vote(s)
    40.0%
  4. No response

    0 vote(s)
    0.0%
  5. Somewhat worse

    0 vote(s)
    0.0%
  6. Significantly Worse

    0 vote(s)
    0.0%
  7. A Nightmare - GcMAF was a nightmare!

    3 vote(s)
    20.0%
  1. Josephine

    Josephine

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    Hi David, I have just red your message from Jan 26th. 2011. Congratulations! Can you tell me how your are doing now? How the treatments works, frequencies of medication? And may I ask which level of dr. Bell's CFS Disability Scale you are/were?
    I really hope everythings goes well and promising for you. Best regards.
    Thx for answering
     
  2. serg1942

    serg1942 Senior Member

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    Hi Cort, i think we have left one notch in the poll between "much better" and "Somewhat better". My improvement is noticeable, but I think is right now in the middle of this two broad categories...

    Also, I started feeling worse, then I had very bad days and better than normal days, and then I felt slighty better in general, and now I feel BETTER (my bad days are better, my good days are better, and I have more good days than before...). So This depends on the number of injections you have been given, your genetics, the VDR status... difficult to apply in the poll, i know...

    Sergio
     
  3. Spring

    Spring Senior Member

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    I filled in the Gc Maf spreadsheet. I think it would be usefull to add 'Nagalase-level' to the sheet. Who is the owner of the sheet? Where can I leave my suggestion? Or can I add it myself? I'd rather not do that.
    Prof. Dr. De Meirleir and Dr. Cheney are both testing on Nagalase and use this as a marker for effectivity of Gc Maf treatment. Mine was drawn before I started Gc Maf, but I don't have the result yet. I found others had a high level, or just low.
    It should be less than 0,95.

    Spring
     
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Spring,

    Thanks for filling out the spreadsheet. If you contact mojoey, he can alter it to add Nagalase.

    Best wishes,
    Sushi
     
  5. Nielk

    Nielk

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    I just came across this poll for rating the treatment with GcMAF.
    I got all excited and then disappointed to see that only three people actually responded.
    I know that there are many more on this protocol. I get that it's hard to quantify how you are feeling because it keeps changing and you probably don't want to mislead people.
    For people like me, who are contemplating starting on it, it would be a tremendous help to see how others have fared on it.
    Whether positive or negative, it would be great to know.
    I know that in the beginning it's hard to tell but, by now I know that quite a few have been on it for 4-5 months. By now, you should have some idea.
    Is the problem that your doctor keeps adding other things to your protocol so it's hard to tell what's affecting your status?
     
  6. mojoey

    mojoey Senior Member

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  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Nielk,

    I probably didn't do the poll either because the answers are not subtle enough and to really answer it you would probably have to have completed treatment with GcMAF.

    And yes, the reason you are not seeing clearer reports on "how we are doing" is that a lot of it is under the surface and can't be gauged by our ever-fluctuating symptoms. I don't think you will find that you just feel progressively better as the weeks on GcMAF pass.

    I have been on GcMAF for 22 weeks (projected time, about 40 weeks) and yes, the addition of other aspects of the protocol a given doctor prescribes for you, can definitely confuse your ability to report on the effect of the GcMAF. And, each week has cyclical symptoms (for many of us) according to the rise and fall of macrophage levels from the GcMAF itself.

    I took only GcMAF for the first approx 16 weeks and I was gradually having more and better "good" days with more stamina and fewer "bad" days. Adding in Nexavir and hydrox B12 injections, plus antibiotics and some other meds and supplements, has definitely made me "feel" worse (though I still have increased stamina on good days). I suspect that I am having increased die-off and detox symptoms as the new elements are likely to be also stimulating methylation and killing viral and bacterial infections.

    I worked with the simplified methylation protocol for a long time and had many of the same unpleasant symptoms I am having now.

    I don't think you can really assess the effect of GcMAF and other elements of whatever protocol you are by evaluating your progress simply on a symptom scale. There is a huge, complex difficult job to be done by GcMAF and the rest of it and some of the symptom-effects are going to be uncomfortable.

    If GcMAF is targeting a retrovirus and other problems, this is great, but there is still a lot of normalizing that will have to happen aside from incapacitating a retrovirus doing other things to kill pathogens. Our immune systems are hugely out of whack as is our digestion, methylation and other metabolic functions.

    I feel hopeful, as it is clear that GcMAF is doing something and I have never heard of it doing anything "bad" (except on or two people who had rises in calcium--this needs to be watched) and, (best scenario), I can understand the causes of some of the unpleasant symptoms.

    Like everything else associated with ME/CFS, this is complicated. Time will tell.

    Best wishes,
    Sushi
     
    taniaaust1 likes this.
  8. mojoey

    mojoey Senior Member

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    I just wanted to add:

    Regarding gcmaf not doing anything "bad" One patient actually had near renal failure on gcmaf. Another patient that had a dramatic rise in c4a developed 4 months of severe insomnia once OFF the gcmaf.

    Although it does seem to have less side effects than other medications, it does cause IRIS which, in some cases, can be very dangerous and near renal failure is nothing to be shrugged off. Similarly Ampligen doesn't seem to cause permanent damage in most cases but did cause unresolved partial paralysis in one patient. Just things to keep in mind.
     
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Joey,

    I too know of the "near renal failure" case. As I remember, the doctor's surmise was that this patient was taking another medication at the same time that was processed through the kidneys. But yes, things can go wrong and you need frequent testing to monitor calcium and Vit D 1.25, (and other things as specified by your doctor).

    Another person took a double dose and got kidney stones. Many or most will need to take things to reduce or prevent IRIS.

    Like every other treatment, you have to monitor things carefully, and I certainly wouldn't advise anyone to "do it on your own."

    Sushi
     
  10. Nielk

    Nielk

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  11. Nielk

    Nielk

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    Hi Sushi,
    Thanks for your reply. Looking at the spreadsheet, I am struck by the diversity of results but, then again that's nothing new with our illness.
    It struck me and maybe I'm wrong but it seemed like some of you started to do better and then when Nexavir was added, it seemed to aggravate things.
    In addition, it seems that taking it slowly had less of a side effect. This actually makes sense but, if I was given a choice to take less for a longer period of time, I think I would chose that because it seems like less of a shock to the system.

    Thanks again Sushi for all your help. You should get a metal for all you have done to help people with this treatmeny!
    Nielk
     
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Nielk,

    KDM (and probably Dr. Englander too) is finding he gets better long term results with using Nexavir (or the version of it you will be using) together with GcMAF -- rather than GcMAF alone. Nexavir seems to have its own job in this protocol, yet, it is true that adding it plus B12 increased my symptoms. This is not necessarily bad, but not comfortable. I have been lowering the B12 dose the last few days and have fewer symptoms. (methylation?)

    And the docs that have been prescribing GcMAF to ME/CFS patients have been starting with lower doses than originally--it seems that cancer and HIV patients (the original trial models) did better with higher doses than we do. I agree, a lower dose is less stressful to the body.

    Best wishes--we are routing for you!
    Sushi
     
  13. Nielk

    Nielk

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    Thanks Sushi.
    I hope the side effects get easier for you and that you get back to health quickly!
    Rooting for you too!

    Nielk
     
  14. Nielk

    Nielk

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    Now that more time has elapsed and more people are on GcMAF for a longer time, can you give me your honest opinion if you had to do it over again, would you still chose to go onit.
    I'm asking this question based on some people's adverse reactions and the fact that some think it re-activated viruses in the body.
    What I'm really looking for is a person like Mary Schweitzer on Ampligen who felt cured (for a while).
    Is there a Mary Schweitzer of GcMAF?
    Is it too early to expect that?
    Any input would be greatly appreciated.
    Thanks,
    Nielk
     
  15. vli

    vli

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    I can't vote in the poll because I HAVEN'T been tested positive for XMRV, but I can say even with my relapse I'd still get gcmaf if I could do it all over again. I've been on it since 25/1. Put it this way, I told Kenny De Meirleir about my relapse yesterday and I was very disappointed he told me to completely stop. Because I'd been "fine" from February to May, I felt stopping totally was a bit drastic.
     
  16. Nielk

    Nielk

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    Thanks vli for your input.
    I'm trying to decide for myself whether to go on it. I read so many conflicting reports that I am really confused as to what to do.
     
  17. lerae

    lerae

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    Redo- can I ask if you are taking antibiotics with Gcmaf?

    Anyone... i think there was a response where a guy was told to completely go off Gcmaf...was this due to inflamation? I know we all suffer from it, but what symptoms
    of increased inflamation do you have? I am not sure i will know how to decipher that.
    thanks,
    b
     
  18. Xandoff

    Xandoff Michael

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    Northern Vermont
    I live in Northern New England but I found a talented ME-CFS clinic and Doctor Lynch in Westerern Mass USA called Northampton Wellness Associates. After testing positive for XMRV in September 2010 I was motivated to find a CFS Doc and I found NWA through co -cure. After seeing the XMRV positive results I started on Valcyte for 14 months and just ended. All the blood tests that he ordered in October 2010 came back with high levels of EBV, CMV and the usual list of suspects and Low Vit D3 etc.

    Dr. Lynch and NWA drew my blood just yesterday for my Nagalese count. I had to pay $70.00 U.S. for the test. Dr. Lynch is recommending that if my Nagalese levels are high I should consider GcMAF. I am very excited about this as I have mild-to severe CFS for 9 years and I am mostly homebound although I did have a good response to the Valcyte and still take famcyclovir. I will also be starting low dose naltraxone or LDN this week.

    If anybody in the U.S is purchasing GcMAF I would like to know of their experiences and cost of the GcMAF so I can determine if I can somehow come up with the $$ to do this therapy!.

    Also if anybody in New England (United States) has been looking to receive REAL treatment and RESPECT for Me-CFS they should contact Northampton Wellness Associates in Western Mass. It is 160 miles from my home in Vermont but is well worth the trip. I spent years trying to find a ME-CFS Doctor in Boston to no avail! Here is their website.http://www.northamptonwellness.com

    XANDOFF
     
    ggingues likes this.
  19. Daffodil

    Daffodil Senior Member

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    that is interesting. more doctors are doing gcmaf.....weird! the word must be going around that it helps a lot...i have never heard of this mass. clinic!

    i think about 60% of people who try gcmaf respond favorably.
     
  20. Xandoff

    Xandoff Michael

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    Northern Vermont
    If the Poll sheet is re-designed, perhaps it could include a category for people who have XMRV like me and who have had thier blood sample sent to Belgium for testing of Nagalase levels. I also had my my blood tested for my current Vitamin D levels.

    This pre-launch GcMAF poll might give us a broader picture of what is going on out there. My Doctor explained to me that his clinic (Northampton Wellness Associates in Western Mass) has been in touch with other Doctors and that GcMAF seems the way to go. Thanks for your patience in receiving all the POST recommendations for the POLL!

    I want to thank eveybody on this posting their experiences and information. It really helps us newbies to GcMAF. I also want to thank the good people at Phoenix Rising for setting this POLL up in the first place. It is very important!

    A dream you dream alone is only a dream. A dream you dream together is reality.
    ? John Lennon
    One thing you can't hide - is when you're crippled inside.
    ? John Lennon
     

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