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

[Ronan]

Just back from De Meirleir visit. He said 70% of people responding well to GcMAF. He is still fully behind xmrv and said there are many positive studies coming down the line. He said that the negative studies have just got all the researchers behind it all working together. He also mentioned the fact that he is finding it in his biopsies, i think he said intestinal biopsies but not sure. Apparently at first the couldnt find it with the biopsies but when they tried a new technique he started to find it.

I also got my serology results back from him so that now makes me xmrv positive by culture and negative by serology thrugh WPI and serology negative through De Meirleir. He said once they find it once thats all that matters. I also got a Neglase test done for the first time. He says its a very hard test to perform.

 

[Chris]

Hi, Lobba; I actually started a thread on this a while ago (see "Statins for CFS?" under "General ME/CFS News"), and got little response. I am still taking a very low dose of Lipitor (10 mg alternate days), and still doing OK. I posted some research on this topic in that thread--you might take a look. Apparently SSRIs do the same trick, but I would rather take a bit of Lipitor than Prozac--since I am not depressed (other than by the state of XMRV, Canadian politics, and the world in general). This wonderful forum is getting unmanageably large--it is only by good luck that we find each other! Best, Chris

 

[Spring]

I'm just back from DML for my 5th injection. Dose stays the same (half vial). I do have some side effects, but they are not severe, although my head feels weird the last days.
I hoped I'd get the results of the Nagalase and prions but the nurse said those tests takes 3 months!!!
They dind't draw blood for calcium and vitamin D as I expected. They do this at 8 weeks, so before my ninth injection on july 4th.

 

[lobba123]

oh my god, are you sure nagalase takes 3 months, i had my first nagalase test in 3 weeks i guess is the prions test the problem

I'm just back from DML for my 5th injection. Dose stays the same (half vial). I do have some side effects, but they are not severe, although my head feels weird the last days.
I hoped I'd get the results of the Nagalase and prions but the nurse said those tests takes 3 months!!!
They dind't draw blood for calcium and vitamin D as I expected. They do this at 8 weeks, so before my ninth injection on july 4th.

 

[Rrrr]

i just did my 8th gcmaf shot (i've been alternating with IV push shots and subcutaneous shots). i was doing 0.20 ml for the first 7 shots. (well, for my 7th shot, i actually did 0.30 ml)

but for this 8th shot, i doubled it and did 1/2 a vial (0.5 ml). i did the shot yesterday morning and i seem to be reacting about the same as my former dose of 0.20 ml.

that is, i feel weak and wobbly, but not horrible.

i still have not gotten the depression others experience, or the burning muscles.

i'll stick with 1/2 vial (0.50 ml) for the next 2 doses and then try a full dose.

this discussion about freezing the gcmaf or not worries me. i got a lot of gcmaf vials when i saw kdm. they are all in the freezer. i hope i did not waste my money.

ALSO, HAS ANYONE YET TRIED getting kdm's gcmaf mailed to them?

 

[Rrrr]

nexavir: i am coming up on my 3 month mark of taking nexavir (for 3 months). this is when you are supposed to know if it is helping you or not.

i just don't know. if it is helping, it is not helping a ton.

i'm on 2 ml per day. (i'm one of the lucky ones who has insurance covering it.)

 

[Spring]

oh my god, are you sure nagalase takes 3 months, i had my first nagalase test in 3 weeks i guess is the prions test the problem

Hi Lobba123,

I will call Red Labs to ask them about it. They won't give me the results but I want to hear from them what takes so long and why. I really want to know my nagalase level.

 

[Spring]

Rrrr: You're really lucky the insurance pays for your Nexavir. I've just passed the 3 months and I don't know either if it works for me. But I think I'm improving a bit. DML said we will evaluate Nexavir after 6 months, then I have 3 months of Gc Maf done. So if they work better together, I must feel something by then I guess.

 

[Rrrr]

Hi Lobba123,

I will call Red Labs to ask them about it. They won't give me the results but I want to hear from them what takes so long and why. I really want to know my nagalase level.

i got my nagalase results from Vitamin Diagnostics (now called ELN http://www.europeanlaboratory.com/) in new jersey, USA, in just 2 wks. it cost $65. my nagalase was high.

 

[Rrrr]

@Rrrr: You're really lucky the insurance pays for your Nexavir. I've just passed the 3 months and I don't know either if it works for me. But I think I'm improving a bit. DML said we will evaluate Nexavir after 6 months, then I have 3 months of Gc Maf done. So if they work better together, I must feel something by then I guess.

so we are on close to the same timeline. i will hit the 3 month mark with nexavir shortly and i just hit the 2 month mark with gcmaf. let's keep in touch about it all.

i know how incredibly lucky i am that i get nexavir covered. i recommend anyone on medicare in the US change their drug plan to one that will cover it. humana does.

 

[Sushi]

i still have not gotten the depression others experience, or the burning muscles.

i'll stick with 1/2 vial (0.50 ml) for the next 2 doses and then try a full dose.

this discussion about freezing the gcmaf or not worries me. i got a lot of gcmaf vials when i saw kdm. they are all in the freezer. i hope i did not waste my money.

ALSO, HAS ANYONE YET TRIED getting kdm's gcmaf mailed to them?

Hi RRR,

I never got depression of burning muscles either--very glad about that. Think about taking your half vial longer than 2 weeks, as reactions can sort of sneak up on you. I took a whole vial for a while but it was just too much and now KDM wants me to stick with the half vial.

Freezing: I believe Yamamoto used to freeze it. Anyway, mine is frozen too and sure has a kick to it.

Adding Nexavir, Hydrox B12, VSL-3 and some other stuff has given me more detox/die-off or something that doesn't feel good. Also a bit of vertigo sometimes when changing positions. That is why I am talking about caution when changing doses.

Best,
Sushi

 

[Rrrr]

you are right, sushi. i'll stick with 1/2 vial (0.50 ml) for a month. you are right! thank you for yr wisdom.

 

[vli]

Just back from De Meirleir visit. He said 70% of people responding well to GcMAF. He is still fully behind xmrv and said there are many positive studies coming down the line. He said that the negative studies have just got all the researchers behind it all working together. He also mentioned the fact that he is finding it in his biopsies, i think he said intestinal biopsies but not sure. Apparently at first the couldnt find it with the biopsies but when they tried a new technique he started to find it.

my stomach biopsy (done through kdm) didn't find xmrv (but that was on 27/1)...

Ronan, have you had 30 shots by now? Each shot being 1ml (or have you cut back the dose)? Would you say you're starting to see the "turnaround" I think you described that KDM talked about (on a post a couple months back)?

Thanks a lot.

 

[cansado]

Well not to discourage anybody, but my body rejected the GcMaf. I was administered 38 shots, and had a 8 week break and experienced no improvement whatsoever. My perforine is back to normal but that is due to the nexavir. Leaky Gut Syndrome has come back in full swing. My immunesystem is still hyperactive.

Next...

 

[Sushi]

Well not to discourage anybody, but my body rejected the GcMaf. I was administered 38 shots, and had a 8 week break and experienced no improvement whatsoever. My perforine is back to normal but that is due to the nexavir. Leaky Gut Syndrome has come back in full swing. My immunesystem is still hyperactive.
Next...

Gee Cansado,

I am so sorry. I'd hoped the break would give you some improvement. At least Nexavir seems to be doing something. Did KDM have any idea why you didn't respond?

And what is next? Are there any ideas for things to try?

Very best wishes,
Sushi

 

[cansado]

Gee Cansado,

I am so sorry. I'd hoped the break would give you some improvement. At least Nexavir seems to be doing something. Did KDM have any idea why you didn't respond?

And what is next? Are there any ideas for things to try?

Very best wishes,
Sushi

Hi Sushi,
Will know about this in a couple of weeks. Don't know what kind of damage control I can try next. Maybe cannabis oil? I have tried ampligen already. XMRV has done its damage! Meanwhile I will try to make my life as comfortable as I can..

 

[Ronan]

my stomach biopsy (done through kdm) didn't find xmrv (but that was on 27/1)...

Ronan, have you had 30 shots by now? Each shot being 1ml (or have you cut back the dose)? Would you say you're starting to see the "turnaround" I think you described that KDM talked about (on a post a couple months back)?

Thanks a lot.

Im just about at 30 shots now. I have been taking the full dose from the start. I thought i was improving a bit a couple of months ago, clearer head, more energy. Since then i have had 4 colds one after the other so i have no idea if its working at this point. Hopefully i can get a couple of months cold free so i can get an idea about what is or is not improvimg.

 

[froufox]

I too am so sorry to hear that cansado but thanks a lot for sharing your experience, its important for people to know this. Yes, at least the Nexavir is helping u to some degree, thats good news. I hope that you get some answers as to why the GcMAF didnt work out for you, and hope there are other options you can try that will get you back on the road to recovery.

Also I just wanted to share that if this doesnt work out for me, I will probably try or add in HBOT. I had a one off treatment about 3 months ago and although I felt pretty rough afterwards for a few days, which presumably was caused by some kind of die off/herx, about a week later I noticed that I was feeling quite a lot better and was out and about more than usual, had more stamina etc. I thought initially that it was the GcMAF that was working (I had already been on GcMAF for several weeks at that point), but then i went downhill again and felt much the same as before. On reflection I really feel it was the HBOT that made the difference at that time. Anyway it was only a one off so I would obviously have to have more treatments to assess its efficacy but I just thought that I would share my experience.

Take care of yourself, (hugs)

 

[froufox]

Hi Rrrr & Sushi, I just wanted to add that I've also had vertigo recently, alongside pretty severe brain inflammation (i tend to think that its part of the same thing, at least in my case). I think might have been exacerbated by adding in b12 drops. Even just turning my head created a whooshing sensation in my brain/head, and dizziness. I think in general its caused by inflammation...I remember having the exact same symptoms from taking antibiotics a few yrs ago which caused major die-off/herxing and too much inflammation as a result. And this time too, I think ive just had too much die off going on.

I had a week break from the GcMAF and stopped the b12 drops (I'm still on Nexavir tho), and most of the severe inflammation has reduced now, thankfully.

 

[cansado]

I too am so sorry to hear that cansado but thanks a lot for sharing your experience, its important for people to know this. Yes, at least the Nexavir is helping u to some degree, thats good news. I hope that you get some answers as to why the GcMAF didnt work out for you, and hope there are other options you can try that will get you back on the road to recovery.

Also I just wanted to share that if this doesnt work out for me, I will probably try or add in HBOT. I had a one off treatment about 3 months ago and although I felt pretty rough afterwards for a few days, which presumably was caused by some kind of die off/herx, about a week later I noticed that I was feeling quite a lot better and was out and about more than usual, had more stamina etc. I thought initially that it was the GcMAF that was working (I had already been on GcMAF for several weeks at that point), but then i went downhill again and felt much the same as before. On reflection I really feel it was the HBOT that made the difference at that time. Anyway it was only a one off so I would obviously have to have more treatments to assess its efficacy but I just thought that I would share my experience.

Take care of yourself, (hugs)

Hey Froufox,
Thanks on the info on HBOT. I have heard about this and maybe it is something to pursue. Are you on Nexavir by any chance or do you take Enlanders' injections? I remember that he says twice a week is enough and KDM wants me to inject it every day. I am thinking of lowering the dose if that hopefully keeps the NK in tact. Does Enlander gave us 2cc? I have tried them also but I cant remember the dosage. Thanks, and hang in there Froufox!