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

[Nabo]

I may have the labels wrong. I divided the vial into 10 parts. My doctor suggested I start at 20mcg and go up to 40mcg, but instead I did 10mcgs and went up to 15mcg.

ah oke, i understand.

i hope you improve a lot! good luck

 

[Forebearance]

I saw a story on the local news about dogs receiving new and innovative treatments for cancer. They showed a dog receiving a shot and the reporter said the dog was getting something that "prevented the cancer from turning off part of the immune system". Doesn't that sound like GcMAF? I bet it was!

The story went on to show a 13 year old golden retriever who had completely recovered from cancer.

 

[Nabo]

Hi everyone

i was wondering if anyone could tell me something more about the gc maf experiences.

I followed this thread last year every day, but i got sicker and sicker because of the gc maf so no computer anymore.

i was wondering are there a lot of positive experiences on this forum???
Or more negative?

On the dutch forum a couple of patients are positive but some only have bad side effects.

i really want to read some positive experiences! haha
Does anyone know someone? of have a good experience therself???

 

[vli]

Nabo, I've PM'd you.

 

[xrunner]

Went to Brussels last week.. (still very tired, was a very long day!!)

I have to go back on gc maf... i really diddnt expected this.

I was on gc maf from dec 2010 till may 2011 and had so many side effects i was really sick.

Nabo
I've got no experience with GcMAF. You could try and establish if it's a sensitivity to it or else.
Some time ago I was in a similar situation with regard to antibiotics which I could not take.
I got over it with Naet. I found it invaluable in determining whether I'm intolerant to something before I actually take it and overcoming sensitivities to meds and supplements. It also lessens side-effects. I've seen it working for others too ( i.e.chemotherapy) . It's worth a try, in my opinion.

 

[Ronan]

I'm on it about a year now and have had some success. A lot more active now than I used to be, still get bad spells but they are not nearly as long now. I had to come of the GcMaf for a bit because of an inflamatory response and I went downhill quickly afterwards but improved again when I went back on it. Don't know if it will be a total cure but I'm certainly getting some benefit from it.

 

[Klmrav]

C4a Results

my C4a results are finally in from 11/30 draw for quest (Adv Diagnos Lab at Nat'l Jewish Health).

16,144 (ref range: 0-2830). Began GcMAF on week of 10/6. Maybe I'll check again at the end of Jan.

Any comments are appreciated, Thx!

 

[Sushi]

my C4a results are finally in from 11/30 draw for quest (Adv Diagnos Lab at Nat'l Jewish Health).

16,144 (ref range: 0-2830). Began GcMAF on week of 10/6. Maybe I'll check again at the end of Jan.

Any comments are appreciated, Thx!

Almost everyone's C4a goes up on GcMAF. The question is, do you feel the inflammation? Legs ache, stuff like that? The C4a should go back down when you stop GcMAF.

Best,
Sushi

 

[Daffodil]

hi all. i am not doing well and, out of desperation, am now thinking about gcmaf. have there really been any improvements in people who have been sick long-term? i am too sick to go through this entire thread, but if someone could give me a quick overview, i would really appreciate it.

i found a thread where some people say that their autistic child is doing well on the gcmaf but havent read too many positives in CFS...

thanks a lot
xoxo

 

[Daffodil]

hi all. i saw a post by lou sayiing gcmaf helped him a lot. does anyone know his story? he is a long term patient too so i am very interested.

really doing poorly, could use some hope...looking for some kind soul to walk me through this gcmaf maze!

another thing...i have been trying to watch the video testimonials of dr. enlander's gcmaf patients...but whenever i click on them, it says "this video is private". does anyone know how to watch them?

thank you and happy new year...

love
xoxo

 

[maryb]

Happy new year to you too daff, hope this year brings us some new hope for a treatment that will work for all of us. Re the Gmaf-sorry I can't help on that I was prescribed it by Prof de Merleir but have felt too unwell this year to start it, 1st one has to be done at the clinic, hope someone responds, I suppose going to see Enlander (or Montoya-he is looking at infections) is not a possibility for you?

 

[Daffodil]

hi mary. thanks montoya has a 5 yr waiting list i think...but i am not sure if he is doing anything new. I might be able to afford a consultation with dr. enlander. he suggested gcmaf for me by email...but it's so new and iffy....and i have so little money left..that i am just not sure. do you guys know if he will do phone consults after initial consultation?

if i heard a lot of positive stories and if i could stay on tenofovir, i i'd give gcmaf a try..but no one knows if its ok to stay on an antiretroviral with this treatment.

i guess i am going to wait for some lipkin news which should come in a couple of months...just need hope to hang on; you know how it is. my plan was to take myer's and glutathione and wait it out but it seems to be making me sicker. i will continue on it, though.

if is a gammaretrovirus and the huge proviral load i have is the problem (really feels like its mostly in my head, no less)...then maybe gcmaf might be worth a try...

i was reading that for HTLV-1, azt + valproic acid lessens proviral load...but i dont think it really results in improvement anyway.

xoxo

 

[heapsreal]

Hi Daff,

Have u tried gamma globulin therapy? Something to give the immune system a boot?

cheers!!!

 

[Lou]

Hi Daffodil,

Got you pm; yes, definitely send your questions. Regarding duel use of antiretrovirals and gcmaf I think the arv would wash out any positive effect of gcmaf, but you may want to check with Rrrr or Sushi for more information on this as I can't remember for sure. Seems like Dr. Snyderman had something to say regarding counterindications.

Please know I am not the only person here that's been significantly helped with this treatment. Okay, guys, don't be shy, let's see if we can somewhat inform Daff on the positives, seems she's read the neutral and negative responses.

Wishing you the best for some real help this year.

 

[Ronan]

Hi Daff, just to add to my recent post about my GcMaf response that I have been unwell for 10 years now.

 

[Overstressed]

Hi everyone!

A happy New Year, and I just wish each brave individual suffering with this disease, getting their life -you once owned- back!

@ Daffodil: to me it looks you're suffering a lot from inflammation and personally I think you need to calm down the inflammation in order to start Gc-Maf. Have you ever tried an anti-histamine ?

Personally I have improved on Gc-Maf, though I must admit that my illness had started in 2007. So I'm not a long time sufferer. I have still bad days, I think the balance is 50/50 at this moment. Also, I have the feeling that the bad spells are shorter in time. My intolerances have improved, I'm less intolerant to lactose, fructose and gluten has improved too. Diet is very important while you're on Gc-Maf.

Currently I'm receiving Gc-Maf bi-weekly and in total I received nearly 70 injections until now. I have had a few (3?) occasions with very very bad headaches and my treating doctor put me on a 'once a month' regimen with Gc-Maf.

I think Gc-Maf can do good things, but it looks like not everybody has benefit from Gc-Maf. I don't know the answer why that is, unfortunately.
Note also, I'm a moderate to low responder according my genotype tests from Red-Labs in Belgium.

Take care,
OS.

 

[Daffodil]

thanks a lot, guys. ronan...so you mean you have improved on gcmaf?

i am suffering so much i am about ready to really plan to see enlander. but how can i stop tenofovir? it has helped me...when i stopped it for 2 months, my inflammatory markers went sky high..my nk cell function went back down to 3. i feel like i really might die if i stop it.

dr. enlander told me he doesnt know if i can stay on it with gcmaf or not.

but i am still very happy to hear these positive stories.....i wish some doctor out there had used gcmaf with antiretrovirals. i know yamamato says not to, but KDM once said something about using gcmaf with them....

anyway, i suppose we will know more in a couple of months....

does anyone think that feeling worse on glutathione is a good sign??

xoxox

 

[aquariusgirl]

nope.. don't think feeling bad on glutathione is good.
see rich's last post.
try taking b2 & b3 with it to make sure it doesn't get oxidised.
Oh and maybe some molybdenum to help process all that sulfur in the glutathione IV.
IT's well understood that some ppl don;t tolerate glut well...until they do. I don't know why. See rich's recent post for his explanation.

gcmaf.. I am on kdm's gcmaf. I have only taken 5 or 6 shots. and i've run into real problems with inflammation. LDN does not seem to help that much. I've just ordered some Nexrutine but i'm scared to take the gcmaf shots . even at a low dose, for now at least.

Bummer, right?

 

[Daffodil]

so does anyone know how to watch those vidoes of dr. enlander and dr. bell patients saying they have had success with gcmaf? it always says "this video is private" when i try to watch them!

thanks

 

[Sushi]

so does anyone know how to watch those vidoes of dr. enlander and dr. bell patients saying they have had success with gcmaf? it always says "this video is private" when i try to watch them!

thanks

Have you tried another browser? I just tried watching them and they played on Chrome.

Sushi