1. Experts Reflect on the FDA Stakeholder Meeting

    Joel asks a variety of leading doctors, researchers and advocates for their reflections on the FDA Drug Development Workshop
    Discuss the article on the Forum thread

GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

Discussion in 'GcMAF' started by Sushi, Jun 30, 2010.

  1. Lou Senior Member

    Messages:
    268
    Likes:
    92
    southeast US

    That is so good to hear, Daffodil. And that about the moment, it's all any of us have.
  2. Sushi Senior Member Albuquerque

    Messages:
    3,710
    Likes:
    1,599
    Albuquerque
    Great! Singing to yourself is good!

    Sushi
    mellster likes this.
  3. ukxmrv Senior Member

    Messages:
    2,756
    Likes:
    818
    London
    That's marvellous Daff,

    That's what I noticed on the MAF314, the good days slowly increasing. The good stomach effects started straight away (but that could maybe be the probiotics/kefir effect for me).
    mellster likes this.
  4. Daffodil Senior Member

    Messages:
    2,124
    Likes:
    232
    thanks guys. uk...thats amazing that MAF works too. that is very good news!

    i also want to add that stopping tenofovir does not seem to have had an impact on the improvement for me.

    i am still noticing a little hairloss in the shower but nothing too dramatic.

    xoxoxo
    mellster likes this.
  5. Forebearance Senior Member

    Messages:
    323
    Likes:
    59
    midwest US
    I'm so happy for you, Daff!
    And for you, mellster!
    mellster likes this.
  6. Daffodil Senior Member

    Messages:
    2,124
    Likes:
    232
    hi everyone. just wanted to report that i increased my dose from 18 ng to 20 ng. i injected it yesterday early morning and today, feel a significant increase in inflammation, with worse brain fog, slight pain in throat, more fatigue and malaise. need a lot of sleep.

    i am a little unclear about whether improvement / nagalse lowerng will continue over time for me on the comfortable dose of 18 ng, or if i should try to keep increasing.

    xoxo
  7. Sushi Senior Member Albuquerque

    Messages:
    3,710
    Likes:
    1,599
    Albuquerque
    Daff,

    Why not see how you go this week and whether the increase in inflammation etc. continue the whole week?From what I have seen, nagalase often continues to go down on a very low dose--i.e. you don't necessarily have to keep increasing your dose. I think it is important to find a dose that doesn't give you uncomfortable side effects.

    Sushi
  8. Daffodil Senior Member

    Messages:
    2,124
    Likes:
    232
    I am wondering if some infected cells can be resistant to macrophages and then after taking GcMAF, only the resistant infected cells will be left. they will multiply, and then we will be in trouble -- can this happen? look at this article. i think it is about cancer:

    http://www.ncbi.nlm.nih.gov/pubmed/1899360
  9. Lou Senior Member

    Messages:
    268
    Likes:
    92
    southeast US

    Not sure this is even correct, but think I remember someone's post that indicated gcmaf activated the macrophages which in turn eventually activated other parts of the immune system. Just a vague memory, could be wrong.
  10. Dan_USAAZ

    Messages:
    52
    Likes:
    20
    Phoenix, AZ
  11. Daffodil Senior Member

    Messages:
    2,124
    Likes:
    232
    i read in 1 of the papers that GcMAF is an antiangiogenic agent in endothelial cells this is good for tumors but could this mean it inhibits growth of healthy blood vessels too?
  12. Lou Senior Member

    Messages:
    268
    Likes:
    92
    southeast US

    Daffodil, sometimes it's just good to hang onto something positive, not to say bury our heads in sand and cease to check all the angles, but it seems we can certainly take heart to some degree in what Dan posted above.
    Sushi likes this.
  13. Daffodil Senior Member

    Messages:
    2,124
    Likes:
    232
    lol maybe you are right. perhaps i am borrowing trouble. i just so badly do not want to relapse again. the GcMAF is helping me so much....i cannot go back to the desperation of that black hole again. ...so I want to make sure I can take this forever...which I guess is impossible to know at this point.
  14. Sushi Senior Member Albuquerque

    Messages:
    3,710
    Likes:
    1,599
    Albuquerque
    I don't think any doctor or researcher has suggested that we take this forever! Probably a maintenance dose for a length of time after nagalase is normal again. GcMAF activates macrophages--eventually we should be able to activate macrophages in sufficient numbers and in a healthy way (as opposed to by LPS), naturally.

    After all, it is not a drug--it is a way to bypass a broken function in the body. When that function is no longer broken, seems like we shouldn't need it.

    Sushi
    Xandoff likes this.
  15. Daffodil Senior Member

    Messages:
    2,124
    Likes:
    232
    Hi Sushi. I disgree..I think that what we have will begin to replicate again if we stop the GcMAF, as HIV does when ARV's are stopped. I don't think this infection will be controlled on its own by the body. If our body could do that on its own, I think CFS would be a self-limiting illness.


    xoxoxox
  16. Sushi Senior Member Albuquerque

    Messages:
    3,710
    Likes:
    1,599
    Albuquerque
    But, we don't have experience of what happens when nagalase levels have become normal and the body is able to activate macrophages naturally. We only have experience of what happens when the activation of macrophages is blocked--pathogens can go unchecked.

    There are doubtless many other things that we will need to do for a "cure" (we just don't know what they are yet!), but I would worry that activating absolutely huge numbers of macrophages (which GcMAF seems to do, even at low doses) could, if done too long, exacerbate inflammation--which is one of the main things that seems to cause symptoms.

    Sushi
  17. ukxmrv Senior Member

    Messages:
    2,756
    Likes:
    818
    London
    Is it one of those chicken or the egg arguments? (sorry to ask such a silly question but I'm so clogged up with a cold that I can't think straight).

    We don't know what causes the low nagalase levels to be low or why our own macrophages weren't doing the job.
    If there is a pathogen causing the ME symptoms (or a series of different ones built up over time) will it hide somewhere from the macrophages and then reactivate when we stop taking the MAF.

    I really don't mind taking something for ever or every now and then if the problem reoccurs. Doesn't worry me. I'd like to have some quality of life before I die but obviously becoming well and needing no drugs is my first choice.

    My own family has early deaths due to cancer and other people with ME (including 2 unlucky in-laws) so I've been thinking about both the low nagalase and also the trigger for ME. Would be great if we could solve 2 problems with the MAF.
  18. Sushi Senior Member Albuquerque

    Messages:
    3,710
    Likes:
    1,599
    Albuquerque
    The theory is that certain pathogens give off nagalase and that nagalase prevents the body from activating macrophages. There are articles pending publication about what gives off nagalase, but it must be something that most of us "have" (it seems that more than one pathogen gives off nagalase) as, when tested, most of us have elevated nagalase. GcMAF lowers nagalase levels in most who take it.

    Hope your cold gets better!

    Sushi
  19. ukxmrv Senior Member

    Messages:
    2,756
    Likes:
    818
    London
    Thanks Sushi! Glad that someone is thinking of theories and that articles will be coming out. Will look forward to seeing these.
  20. Overstressed Senior Member

    Messages:
    357
    Likes:
    69
    Belgium
    Hi Sushi,

    I know that we're different from HIV, but there are HIV-patients reporting low or normal Nagalase, and their viral load went up. My Nagalase was measured in November 2010 -I had received 27 injections of Gc-Maf- and it was 0.72, so, near normal. I have not tested it again, yet. That's on my list of to do next. But, as you know, I'm far from healthy. To me, it looks like Nagalase is not a reliable bio marker. Maybe, other things need to be fixed too, who knows ? I have a very bad feeling about viral load going up. That is not good at all, and why would it be different with HIV ? Sorry for being so sceptical, but I stopped believing Yamamoto's findings. Does anyone know if he's a real immunologist ? I don't think there's one patient who can confirm/replicate Yamamoto's findings.

    Best wishes,
    OS.

Share This Page