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

[RivkaRivka]

updated list

can we get a list of who is now on GcMAF? and when they started. if you send me the names, i'll keep adding them to this list. or you can cut and paste the list and add it yrself to yr own post.

== Past ==
Joey (no response, but it was only a limited trial of a pre-curser of GcMAF)

== Now ==
Cansado, KDM, Fall 2010
Overstressed: started May 2010, FOK Low responder, BSM moderate to low responder. 3 Years ill.
CindyWilliams: Dr. Sharp, Nov 2010??
Nabo: Dec 2010
Ronan: KDM, Dec 2010
Lou: direct fr BGLI, Jan 2011
Garcia: KMD, Jan 2011
Froufox: KDM, Jan 2011

== soon ==
Sergio: KDM, Jan 2011
Sushi: KDM, Jan 2011
Vli: KDM, Jan 2011

 

[Alexia]

Rivka,

If I understood well cansado his a KDM patient.

 

[RivkaRivka]

thanks for that info!

 

[RivkaRivka]

if KDM gives a patient gcmaf, and the patient puts it in the freezer, how long is it good for? anyone know how long gcmaf can retain its potency in the freezer?

 

[Lou]

Hi RivkaRivka,

I wanted to have something more definitive to say before posting, actually I wished to have something more positive, but here's the gist to date. First injection taken Jan. 3, 2011(Rivka, please change from 2010 on your list) and tomorrow I go for my 5th shot. Not a whole lot has changed thus far. Side effects, if any, were minimal and this could be some indication that I'm a low responder, don't know that from test, just my instinct.

My belief is that gcmaf will help many folks, some even perhaps to a large degree. There are significant reasons why it has thus far not done much for me, and to remain hopeful that it will 'kick in' at some point. First, BGLI has recommended to my doctor that for first eight injections the dose to be 1/5 normal dose. So, a single normal dose won't be reached until I get the shot tomorrow. Another thing is that I have been sick much longer than many here(got sick 1984 while living in Lake Tahoe), and the viruses may be harder to get to given all that time they've had to hide.

I purchased 6 full doses; don't hold me to this but I think it's good for up to a year if frozen; it wasn't sent to me but rather to my doctor(Dr. Rebecca Boyd, Hattiesburg, MS).

One side note: This may apply only to my own strange, screwed up immune system, but my experience with mythelation treatment(this by a doctor in Florida) was not a good one. Like most with me/cfs my blood pressure had been low for many years prior to mythylation supplements and since taking these supplements(folipro and others) it's been just the opposite and now difficult to lower. May even have to go on some bp med which I am very reluctant to do--if gcmaf isn't classified as a drug then I currently take none, and why would I as they all make me worse rather than better.
p.s. I cannot tolerate methyl b12, but hydroxy b12 doesn't cause problems. I think I have trouble with methyl anything.

Can't recall if you had other questions. Hope this helps some.

 

[dschlindwein]

Please add VDR test results to the list, if available, please?

updated list

can we get a list of who is now on GcMAF? and when they started. if you send me the names, i'll keep adding them to this list. or you can cut and paste the list and add it yrself to yr own post.

== Past ==
Joey (no response, but it was only a limited trial of a pre-curser of GcMAF)

== Now ==
Cansado, KDM, Fall 2010
Overstressed: Oct 2010??
CindyWilliams: Dr. Sharp, Nov 2010??
Nabo: Dec 2010
Ronan: KDM, Dec 2010
Lou: direct fr BGLI, Jan 2011
Garcia: KMD, Jan 2011
Froufox: KDM, Jan 2011

== soon ==
Sergio: KDM, Jan 2011
Sushi: KDM, Jan 2011
Vli: KDM, Jan 2011

Thank you wonderful people for participating in GcMAF trials. I am feeling just a bit discouraged myself because I tested homozygous polymorphic Bsm (i.e. BB) when my VDR gene was looked at about 6 years ago by Genovations (now Genova). But those of you trying GcMAF who know what your VDR looks like just might show Yamamoto's predictions on response to be inaccurate.

Good luck all,
Deborah

 

[RivkaRivka]

lou, thanks for reporting in! very helpful.

do you know if yr gcmaf was held up at customs? that can degrade its potency. when you got it, did it say any info (or can you ask yr doc this question), like, when it arrived at customs and how long they held it for before they let it go thru?

did bgli say it could be kept frozen for a year, or is that just yr best guess?

i first got sick in 1983. so i hear you about being a long termer. (i had a 7 yr semi-remission, then got hit again with it. and have now had cfs for 20 more years, making it 21 yrs of active illness. but i was first hit with it in 1983.)

separately, re: methylation: i'm so sorry you have to deal with high BP now!!!!

my BP was always super low, too. then on the Rich Van K simplified protocol, my BP normalized for the first time. i stopped needing to take salt every day. and now, now that i'm off the simplified protocol, i still do not need salt: my BP is pretty much normal now. strange.

 

[Lou]

RivkaRivka,

Sorry to hear this affliction has taken up so much of your life as well. That it will keep frozen for one year is best guess for my memory of BGLI statment on this issue. I personally don't know and wouldn't ever guess. As for as customs they couldn't have held it long as it was received at my doctor's office quickly, if I remember correctly, within a week or thereabouts from ordering.

 

[RivkaRivka]

Not enough time to go look for it now, but on another thread about GcMAF here on PR, someone mentioned that KDM (I believe) said it was stable for two weeks at room temperature.

hi leela,

that is kdm's gcmaf, and lou is using BGLI's gcmaf. so they could be different in this respect.

warmly,
rivka

 

[Sushi]

RivkaRivka,

That it will keep frozen for one year is best guess for my memory of BGLI statment on this issue. I personally don't know and wouldn't ever guess. As for as customs they couldn't have held it long as it was received at my doctor's office quickly, if I remember correctly, within a week or thereabouts from ordering.

Lou,

Did BGLI send it in a cooler pack or at room temperature? And did they say to freeze it after you got it?

Thanks! I am leaving for Belgium in a few days to see KDM, hopefully to get GcMAF and want to find out as much as possible about how to carry and store it.

Sushi

 

[cansado]

Not enough time to go look for it now, but on another thread about GcMAF here on PR, someone mentioned that KDM (I believe) said it was stable for two weeks at room temperature.

that info is incorrect. I believe it is 24hrs stable at room temperature. It is best to keep it frozen. And yes I am a KDM patient.
Make sure you ask about calcium levels while on gcmaf. We have been getting check ups for that every other week.

 

[Sushi]

that info is incorrect. I believe it is 24hrs.

Yes, I believe the article said that it degrades by 50% in two weeks at room temperature, not that is was stable for 2 weeks at room temperature.

The article was by Pacini: http://www.ncbi.nlm.nih.gov/pubmed/21170647

Sushi

 

[RivkaRivka]

again, we do not know which gcmaf product was being used in this pacini paper, do we?

 

[Sushi]

again, we do not know which gcmaf product was being used in this pacini paper, do we?

If we could get the whole paper and not just the abstract, it should give the source. Anybody out there with access to full journal articles?

Sushi

 

[Lou]

Hi Sushi,

Honestly, I don't know for sure as it was sent directly to my doctor. There again, I'm not totally sure of this, but I think I remember from emails with Bgli that it was sent in special package via UPS to keep it either cool or frozen. It is kept frozen at the doctor's office and they thraw for ten minutes before giving the injection. Best of luck on your trip, doctor visit and gcmaf treatment!

 

[garcia]

If we could get the whole paper and not just the abstract, it should give the source. Anybody out there with access to full journal articles?
Sushi

Hi Sushi, this is what the paper says about the other source of GcMAF:

This GcMAF preparation
was used in all the experiments reported in this study, and
when we mention ‘‘GcMAF’’, we refer to this preparation,
obtained from Professor N. Yamamoto. In addition, in the
experiments reported in Table 5, a commercially available
GcMAF preparation, obtained from www.gcmaf.eu, was
tested for comparison.

 

[leela]

sorry on all accounts, my bad. been really ill lately;knew there was a good reason i wasn't posting! will delete my previous post.

 

[garcia]

sorry on all accounts, my bad. been really ill lately;knew there was a good reason i wasn't posting! will delete my previous post.

Don't worry leela, your recollection is correct. I believe Ronan posted that KDM told him it was stable at room temp for up to 2 weeks. However we know from the Ruggerio paper that that is not true.

 

[RivkaRivka]

i'm emailing with BGLI and will post some excerpts of the emails shortly.

 

[RivkaRivka]

Hi Sushi, this is what the paper says about the other source of GcMAF:

you quoted the paper here: "This GcMAF preparation
was used in all the experiments reported in this study, and
when we mention ‘‘GcMAF’’, we refer to this preparation,
obtained from Professor N. Yamamoto. In addition, in the
experiments reported in Table 5, a commercially available
GcMAF preparation, obtained from www.gcmaf.eu, was
tested for comparison. "

is there any hint on how it compared, the Yamomoto brand verses the www.gcmaf.eu brand?