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

[anne_likes_red]

aq, not sure if this applies to you (?) but Scott F AKA Better Health Guy mentioned he'd heard from doctors using GcMAF that herpes viruses seem to reactivate while using it. How much that would play into inflammation I'm not sure, but I wondered.

Have you been taking a 100ng dose, or smaller?

Sorry about the inflammation!

Anne.

My doctor told me to quit gcmaf during my last apptmebnt when i told hiim about the inflammation. he said i had too many coinfections & they were activating the macrophages abnormally. I had about 8-10 shots...or around abt that number.

Hope to come back to it down the road.

 

[aquariusgirl]

pos+ for ebv, h pylori, i suspect chronic HHV6 & CMV & Mycoplasmas (high IGG titers)

 

[aquariusgirl]

never went higher than 50ng...last shot was 20ng...

 

[froufox]

Thats what I was told in the end too ... it was partly because my nagalase was in the normal range (i dont know if the testing is accurate though), but also that i needed to treat the coinfections and specifically the lyme .... I have lyme & co, plus CMV, EBV and no doubt others aswell, and i presume that this was what was causing the inflamamtion in my case too, as with Aquariusgirl. But I had already stopped the gcmaf anyway, a few months prior.

 

[Daffodil]

can co-infections lower nagalase? wonder why nagalase is normal range for some people..wonder if any of this even makes sense :-/

 

[Nabo]

that is a good question.

i have chronic hhv6 and my nagalase is normal.

But i am so sick and almost bedbound.

 

[Nielk]

I think that the way the labs test for Nagalese today, is not very reliable. (to say the least)

 

[Klmrav]

Hi Nabo,
I've been taking gcmaf from Dr. E for 4 months now. I reduced from 50ng to 20ng and know of people doing 10ng. I suggest if you try it again once you find out if you have hidden lyme or co-infections by doing a abx provocation. It was hidden for over a decade with me now my 22yr old daughter has it. She has a history of recurring mono, anxiety and panic attacks and may have had it her whole life. She went on amox for tonsilitis, 3 days after finishing the course she developed roving arthritis that settled into her fingers...I that point I begged to to get tested. I think lyme that has been let go to thrive for decades my be impossible to clear, but I'm praying for some relief.

We both also have other co-infections besides ebv, hhv6, parvo b19, mycoplasma, etc. My reaction to gcmaf has settled down.

Have you had an IGENEX test after a provocation? It took a few times to get it pos by PCR. I was on minocycline for lyme and mycoplasma in Dec, but developed a bad reaction (rash) three weeks into treatment. I have to see my lyme doc for next steps. I'm hoping that the gcmaf will help reduce the lyme suppressing my immune system.

Best wishes to you Nabo and all

 

[aquariusgirl]

My nagalese was in range @ baseline. Lotsa questions... not many answers.

 

[Overstressed]

My nagalese was in range @ baseline. Lotsa questions... not many answers.

Hi Aquariusgirl,

it's the first time I read this - that Nagalase is normal at baseline... Indeed, many many more questions. I have already heard a few times of HIV+ people who's viral load went up on treatment with Gc-Maf, where their nagalase went down.

Take care,
OS.

 

[xrunner]

As the immune system moves up gears from a state of suppression you could see antibodies titres move up.
You see that for e.g. with Borrelia, where drs report false negatives western blots turning positive after treatment gets underway. That's because that infection is very suppressive of the immune system which is so weak it can't make enough antibodies to show up in tests including tests for other bugs. Treatment gives the immune system the chance to get started and deal with the infection(s), as more antibodies are produced this comes up in the tests.

 

[lobba123]

hiv pcr is a useless test german researcher with no hiv made the test and she has got a result in the thousands, hiv has never been purified so it is not known what the pcr gets, it can be hiv and it can be other, the inventor of the pcr a nobel price researcher has declared he prefered not to discover the pcr method because of the wrong use

the only thing certain as regards hiv is that use of gcmaf for very long time or maf314 in a very short time can increase cd4 counts

Hi Aquariusgirl,

it's the first time I read this - that Nagalase is normal at baseline... Indeed, many many more questions. I have already heard a few times of HIV+ people who's viral load went up on treatment with Gc-Maf, where their nagalase went down.

Take care,
OS.

 

[Daffodil]

just got back from NYC with GcMAF....

here goes nothin'!

 

[Forebearance]

Good luck, Sue!!!
Forebearance

 

[Sushi]

just got back from NYC with GcMAF....

here goes nothin'!

Any reaction so far???

Sushi

 

[Daffodil]

thanks forebearance

hi sushi...i have only had 1 injection at 0.25 and i dont think i notice anything so far. ive really been jaded by all the treatments not working long term, so my state of mind is a little different this time around. i think i am more patient and not as hopeful.

dr. enlander is a nice man. he mentioned that dr. mikovits had visited him recently. wasnt much more news really....he said some patients have done remarkably well on the gcmaf, some have not had response and very few seem worse but i got the impression this was rare.

his staff is very nice. the nurse (or assistant?) who spent the most time with me was very active, running around...i kept thinking how lucky she was not to have the disease..but as she was injecting me, she mentioned she had CFS too.

the hepapressin is a big extra cost i hadnt counted on, but i think thats a mandatory part of the protocol too.

mt sinai has next generation sequencing equipment too so maybe someone will find something...:-/

i have to say.. a nice staff can make all the difference. dr. lerner's staff acted like they would rather you just dropped dead!

xoxxo

 

[Nielk]

Hi Daffodil,

Good luck with the GcMaf. I really hope it helps you.
I appreciate your good word about Dr. Enlander and his dedicated staff. They are amazing.

 

[Daffodil]

hi nielk. yea it was weird..usually i have pages full of questions. i dont know if it was my fog or just wanting to give up already, but i just didnt have anything to ask. i had to wait 2 hrs for the shuttle to the airport so i just sat there in the waiting room, hugging my cooler of meds lol. finally, the nurse asked, since the doc was free, did i want to ask him some questions?. i said ok..walked into his office and just sat there, drawing a blank again. he said the lipkin group is still collecting samples (or was it analyzing?) ....but i suspect they have found something. anyway maybe its VERY wishful thinking on my part.

dr. enlander pointed out my 1:640 HHV6 IgG, but i pointed out my 3 yrs of antivirals, and vistide trial....so i dunno. he was joe demaggio's doc, i saw a pic...pretty neat.

anyway, if anyone has any questions for the next time i talk to him, please let me know. maybe i will have time to ask. wish i asked the message board for questions before my trip. i really dont care to ask anything anymore. no one knows anything and i am too jaded now.

dr. enlander wasnt sure as to whether i should continue the tenofovir with the gcmaf but i think i will for now. i think he mentioned he could ask demeirleir (they speak twice a week? or was it month?)...but i dont even think demeirleir knows.

he said the cymbalta and atenolol were ok. he wanted me to take a stress test, which i am sure will kill me . he wants to rule out underlying heart condition, given my chest pain etc.

almost every brain MRI i have had, although normal or almost normal, points out evidence of substancial sinusitis. no doc cared to delve into this and i just thought it was part of my whole head inflammation..so i didnt pursue it. however, dr. enlander suggested drainage. not sure if anyone here will do it, but i will try.

all in all, a positive experience i would say.

certainly, hope for them finding a virus soonish is there...the stirrings are too great to ignore, and that will be a HUGE relief..but i wonder how long it will take to find drugs ...

xoxoxo

 

[Forebearance]

Wow, that's interesting that Dr. E gave you a little behind the scenes stuff about Dr. Lipkin. We're all just waiting and hoping that good things are happening.

I'm glad that you didn't have a big negative reaction to GcMAF. I would have felt bad if you had had a reaction like I did. You've been through enough. It makes sense, since you don't seem to be really sensitive to meds. Maybe you'll end up needing many doses to feel an effect, or larger doses.

Thank goodness you have a good doctor to help you with this! He sounds really cool.

I hope the sinus drainage works out.
Fore

 

[Daffodil]

thanks forebearance. could you please tell me what happened when you took gcmaf? how much did you take?

thank you