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

Dan_USAAZ

Senior Member
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174
Location
Phoenix, AZ
In the early days of this thread, there was more talk in regard to taking with GcMAF with Nexavir/ Kutapressin. I would appreciate getting opinions from our experienced members as to whether or not they feel it is beneficial to use these medications in parallel.

Thanks in advance for any insight you can provide.
Dan
 

Sushi

Moderation Resource Albuquerque
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Albuquerque
I've been taking them together so it is hard to separate what they are doing. My doctor says he is getting better results giving them together rather than just GcMAF. Dr. Enlander also continues to give them together. Don't have any stats though.

Best,
Sushi
 

Daffodil

Senior Member
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5,890
again am not doing well on the 20 ng so its back down to 15 after a break. will receive NK cell function results monday.
 

Rrrr

Senior Member
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1,591
artesunate is part of the gcmaf protocol for some of us (cheney and KDM recommended it). but i heard that cheney says you can't be on artesunate while on iron supplements or the artesunate turns toxic in your body. does anyone know about this? whenever i go off my iron supplements, my hair falls out.

rrrr
 

Rrrr

Senior Member
Messages
1,591
In the early days of this thread, there was more talk in regard to taking with GcMAF with Nexavir/ Kutapressin. I would appreciate getting opinions from our experienced members as to whether or not they feel it is beneficial to use these medications in parallel.

Thanks in advance for any insight you can provide.
Dan

i am on both gcmaf and nexavir. hard to tell which is helping me, but something is helping me.
 

Rrrr

Senior Member
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1,591
Natural Killer Cell tests pre and post GcMAF

i did a pre-gcmaf NK test results (pre-gcmaf + nexavir, actually). they were done at WPI/VIP in March 2011. i find the tests results confusing, since they include VIP tests called "NKC1, NKC2, NKC3, NKC4, NKC5, NKC6, NKC7 and NKC9 LU30."

is it the VIP NKC9 LU30 test i want to focus on? if so, in March 2011 my NKC9 test result was 17 (ref range 8-170).

i next did the Quest Labs NKCF LU30 test 1 year later (which was just last month), after 1 yr on gcmaf + nexavir. the test result is 48 (ref range 8-170)

question:
1. is that a significant increase, or minor in the total scheme of things?
2. did anyone else see their NK cell test results go up during the year you were on gcmaf (or gcmaf + nexavir)?

rrrr
 

Daffodil

Senior Member
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5,890
yes!!!!!!!! that is a significant change!!!!! healthy people have LU30 between 60 and 80 so this is going in the right direction!!!

this means gcmaf could be the real deal. the only thing that ever raised LU30 that much, in all my years of researching and talking to people, is maybe Ampligen. For me, Tenofovir and AZT did it too, it went from 2 to 60 ..then back down to 13 when i stopped AZT
 

Rrrr

Senior Member
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1,591
wow, i'm thrilled to hear this, daffodil. thank you for yr input.

also, you asked about my relapse. the short story is this:

gcmaf + nexavir helped me a lot. i started in april 2011 with KDM's gcmaf. it was a rough ride for a few months, until i took a 6 wk break and then lowered the dose to 0.10 cc per week. a tiny dose, and i stuck with that tiny dose from then on. after a few month on it, i started to be able to go on walks for the first time in 3 yrs. like 45-50 min walks! then i crashed due to a round of abx. then i got better 2 months later and was able to start to walk again and do indoor biking (never in 23 yrs of being sick could i do this! it was amazing). then i stupidly pushed past my PEM and kept walking and biking thru my exhausion. i was just so excited to be able to exercise again. stupid. i should have respected the PEM. i didn't. so i crashed. hard. bedridden/homebound again. for 2 months. i stopped gcmaf for 6 wks of that time. i re-started it 2.5 wks ago. and i'm only now finally getting out of that crash. i went on two short walks (10-20 min each) over the last 2 days. so i think i'm officially out of the crash.

the complicating factor is that i'm not sure about all the other aspects, like:

1. did adding in vitamin d help bring on the crash? (i have a hard time with Vit D, but my Vit D levels are super low in my blood work, so i discussed with KDM and we decided it was okay for me to do 1000 iu per day. so i started that about 1 month before the crash.)
2. did re-starting artesunate help get me out of the crash, or was it just the passage of time that got me out of the crash?
3. did starting cordyceps mushrooms help get me out of the crash, or was it just the passage of time?
4. did re-starting gcmaf 2.5 wks ago help get me out of the crash, or was it just the passage of time?

i have a feeling that re-starting the gcmaf helped get me out of the crash enough to go on walks again. but i'm not sure.
 

Daffodil

Senior Member
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5,890
rrrr...2 months homebound again...ugh. this is all so slow lol...looks like it will be years before we can exercise like we used to. arghhhhh

i'm very glad you are out of the crash, however it happened...

are both your vitamin D's low?? the 25 and the 1,25??

but anyway, take comfort in the NK cell function jump. it is the most significant thing for us.

xoxoxo

ps. i went grocery shopping yesterday...chest pain the entire day afterwards, no matter how much i slept. but i've only taken 13 shots so far....
 

Rrrr

Senior Member
Messages
1,591
great to hear the good news about you going shopping!!!! that is fantastic.

my d 25 is always way low (like 20 or below)
my d 1.25 is low but not as low (like 36)
 

Daffodil

Senior Member
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5,890
yea i overdid it ..i bought a cart of stuff cuz we never get to go....tried to lug it to the bus stop and eventually just collapsed on a bench and had to call a cab lol

wow both vitamin D's low..interesting. for me, usually the 1,25-D was high and the 25-D was low. ...but now cuz of GcMAF, the 1,25-D is normal but the 25-D is still lowish. i will ask Dr. Enlander if I should start supplementing too. I think he did tell me that 1000 IU would be OK when I saw him...
 

Overstressed

Senior Member
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406
Location
Belgium
Hi all,

since beginning of this year, I'm not doing well, worse, I'm re-experiencing the beginning of my infection all over again. I continued Gc-Maf all that time, until beginning of March. By then, I decided to quit, because it was doing more harm than good to me. I had received 69 injections by then. I was comfortable with the full dosis, and had to stop twice in the course of my treatment with Gc-Maf, due to heavy headaches.

It took me some while to understand what was happening, and now, I think I know. My recent bloodwork also provided me some 'aha'-moments: I have seen this before. My current bloodwork shows the same pattern right after my infection. But what exactly is happening, I don't know. It is either a new infection with the same visitor, or a reactivation of latent virus. The source of a new infection could be the Gc-Maf itself(Gc-Maf is a blood product, after all, and not without risk). Re-activation is another possibility. Other causes are unlikely, except EBV. My sister in law experienced an infection, probably by christmas, last year. But, I should be immune to EBV, my antibodies are sky-high. But, are we immune in that case? High antibodies doesn't mean they are of good quality. Perhaps I got re-infected by EBV, but my bloodwork didn't show any IgM antibodies to EBV, which would mean I'm in the acute phase of the infection.
Also, my vit-D has never been so low ever, so I'm currentlty supplementing with vit-D3.

I'm afraid, I can't exactly answer what is happening to me, I only can pass my experience. Sushi and Garcia are completely right, if you're experiencing a worsening of your symptoms, you should go lower on Gc-Maf. The better you control your inflammation, the better Gc-Maf will work. I would also be very careful taking any supplements together with Gc-Maf. Anti-virals, however, together with Gc-Maf is a good match. On the other hand, supplementing with Vit-D, while on Gc-Maf was not the best I could do. That's at least my own experience.

Now that I'm off Gc-Maf, vit-D is doing good things to me. Also, R-alpha lipoic acid now is giving me tons of energy. I took that a while together with Gc-Maf, and it did no good. So, I would be very cautious taking supplements with Gc-Maf.

Note however, that this is my own experience and it doesn't need to be yours. Let me conclude with a positive anecdote: last week my wife forgot an expensive neclace in a dressing room and it was near closing time. She didn't noticed until we were app. 2000 meters from the store. So, I immediately started sprinting back(not running!) and got on time back in the store...and got the neclace. I didn't have time to think, but right-after, I assumed I will crash the very same evening, or the day after. Nothing happened, more, I just felt amazingly good after that sprint. The days after, I felt like I was healthy again.

Best regards,
OS.
 

Rrrr

Senior Member
Messages
1,591
OS,

thank you for telling us this story, this story that has both good and bad things in it. GREAT that you are able to sprint like that. and bad that you are so sick again.

i am on a tiny dose (0.10 cc) once a week. i wonder what my outcome will be compared to you people who are on much higher doses. for now, i'm certainly not "better" or healthy, by any stretch of the imagination. but at least i was able to go on a walk again yesterday and the day before.

rrrr
 

Daffodil

Senior Member
Messages
5,890
hi all. OS...did you ever get your NK cell function tested? that might tell you if you are really getting worse...

it would be nice if one day, something about this disease made sense.
 

Overstressed

Senior Member
Messages
406
Location
Belgium
Hi Daffodil,

no, I have not had a qualitative NK-cells test. Just a very basic quantitative. Actually, I don't know where to get such a test. I asked my lab, but she told me they don't offer such tests, and she didn't know where I could get one.

The only thing that is different compared when all the misery started is that my iron level remains normal. After my infection, my iron levels continiously stayed low -and my family doc told me it's typical after an infection-, but while on Gc-Maf, the iron came up again. And my bloodwork of March showed still normal levels. But, what is normal in this disease ? Perhaps my iron is normal because cells spoil iron into the blood ? Or it is not absorbed ?

Best regards,
OS.
 

Overstressed

Senior Member
Messages
406
Location
Belgium
OS,

thank you for telling us this story, this story that has both good and bad things in it. GREAT that you are able to sprint like that. and bad that you are so sick again.

i am on a tiny dose (0.10 cc) once a week. i wonder what my outcome will be compared to you people who are on much higher doses. for now, i'm certainly not "better" or healthy, by any stretch of the imagination. but at least i was able to go on a walk again yesterday and the day before.

rrrr
Hi Rrrr,

it looks like we at least have here two sub-groups, one that respond fairly on the normal dose, and another who need to start on very small doses. Yamamoto once told me on the phone that people with CFS/ME have Lyme. But, I don't have Lyme. Do you ? To me, it looks that people with Lyme have difficulties on the normal Gc-Maf dose. Perhaps genetics are also at play, and/or the viral load.
I have much trouble with tinnitus, first my left ear, and now it starts also on my right.

But, it's probably the best thing you can do, continuing on the small dose. I think you will gain much more this way, rather than to 'overdose' yourself. I'm off Gc-Maf since March, but still have the feeling that some aspects are still improving.

Take care,
OS.
 

mellster

Marco
Messages
805
Location
San Francisco
I think a decent NK cell activity test would be useful as increased activity will likely come with an increase in cytokines which can be mistaken for infection or other causes for the perceived worsening. It can be a balancing act I guess.
 

Daffodil

Senior Member
Messages
5,890
i cannot believe this. at this rate, its going to take 2 yrs before i feel better.

last night i watched "oprah lifeclass" with deepak chopra, tony robbins, and some other people. they were giving people advice on how to live and be happy....and i wished so badly i was there to yell "YOU CANT DO THAT WITH CFS!" LOL
 

Dan_USAAZ

Senior Member
Messages
174
Location
Phoenix, AZ
I started GcMAF on Thursday of last week. Dose of 100ng by intramuscular injection. I appear to be handling the full dose fairly well. Hoping to add Nexavir, but still working through the details and finding best source.

Already feeling some results (some better, some worse), but obviously way too early to make assumptions or report.

I will track results, including affect on Nagalase levels, and report back.
 
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