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

[Lou]

hi all. i have been on 16 ng of GcMAF for about 3 1/2 - 4 months, and in the past, when i tried to increase even a little, i would feel very sick. however, on friday, i increased to 18 ng and felt so side effects.

overall, the good days are now out-numbering the bad. yesterday, i cooked, cleaned up afterwards, went grocery shopping, shopped for paint and paint supples, and probably walked over a mile. today, i feel ok., maybe just a little runned down,

i had some rage episodes and just general mood swings but they seem to be getting better. i find myself in better spirits the last while, puttering around the apt, making plans to redecorate (with almost no money with which to do it!) and singing to myself.

in the back of my mind, there is always the awareness that i could relapse at any time and that there are so many unknowns that i cannot count on any future yet....so i am just trying to enjoy the moment.

in a week, i plan to finally get a nagalase test, which i have never had before. i also plan on increasnig the GcMAF to 20 ng next week.

xoxox

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

 

[Sushi]

hi all. i have been on 16 ng of GcMAF for about 3 1/2 - 4 months, and in the past, when i tried to increase even a little, i would feel very sick. however, on friday, i increased to 18 ng and felt so side effects.

overall, the good days are now out-numbering the bad. yesterday, i cooked, cleaned up afterwards, went grocery shopping, shopped for paint and paint supples, and probably walked over a mile. today, i feel ok., maybe just a little runned down,

i had some rage episodes and just general mood swings but they seem to be getting better. i find myself in better spirits the last while, puttering around the apt, making plans to redecorate (with almost no money with which to do it!) and singing to myself.

in the back of my mind, there is always the awareness that i could relapse at any time and that there are so many unknowns that i cannot count on any future yet....so i am just trying to enjoy the moment.

in a week, i plan to finally get a nagalase test, which i have never had before. i also plan on increasnig the GcMAF to 20 ng next week.

xoxox

Great! Singing to yourself is good!

Sushi

 

[ukxmrv]

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).

 

[Daffodil]

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

 

[Forebearance]

I'm so happy for you, Daff!
And for you, mellster!

 

[Daffodil]

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

 

[Sushi]

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

 

[Daffodil]

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

 

[Lou]

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

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.

 

[Dan_USAAZ]

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.

Hi Lou,
You may be referring to one of my previous posts in this thread.

http://forums.phoenixrising.me/inde...tor-anyone-taking-it.4892/page-40#post-107513

 

[Daffodil]

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?

 

[Lou]

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?

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.

 

[Daffodil]

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.

 

[Sushi]

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.

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

 

[Daffodil]

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

 

[Sushi]

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

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

 

[ukxmrv]

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.

 

[Sushi]

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.

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

 

[ukxmrv]

Thanks Sushi! Glad that someone is thinking of theories and that articles will be coming out. Will look forward to seeing these.

 

[Overstressed]

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

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.