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

[Rrrr]

note: i have 3 friends on gcamf.eu's product. two have experienced very bad side effects (or whatever you want to call it) on tiny doses. i'm not saying gcmaf.eu has a bad product. what i'm saying is, please, people with ME/CFS, please be careful about doing too much for your weak system/body. what i'm saying is, whatever gcmaf you take (from whatever source), start very "low and slow" and only do a tiny amount. gcmaf seems to kick our butts for some reason. we are not HIV+, we are not cancer. we are our own strange illness, and for some reason gcmaf can really impact may of us -- no matter the brand or source of the gcmaf. so start low and go slow.

for the record, i'm on my 23rd dose of gcmaf, and most have been a tiny tiny amount (1/10th of a cc done weekly or twice weekly). and i'm now walking again -- going on regular almost daily walks -- for the first time in 3 years. great!! so obviously i'm doing better than i have in while, while on gcmaf + nexavir + artesunate + b12 shots. i recommend it. but if you try it, just go very very slowly. (i had a 6 week hellish period on this protocol and had to take a break: 2 breaks of 3 wks each. when i went back on the gcmaf, i have only been doing tiny tiny doses, and that seems to work for me.

 

[gracenote]

I appreciate everyone sharing their experiences. I'm waiting for my Nagalase test results and then will decide if I want to try GcMAF.

 

[mojoey]

Hey Rrrr,

Thanks for letting us know about your friends' experiences and your own. Thrilled to hear you're continuing to go in walks. There's something to gcmaf for at least a subset of us, i'm sure of it. Can you ask your friends if they got baseline c4a's done?

 

[Rrrr]

only one friend may have gotten that test. i'll ask.

i did.

but i don't think labcorp has accurate testing for c4a.

mine was sky high pre-gcmaf, and much lower after, while on gcamf. but again, i think the testing was not accurate.

Hey Rrrr,

Thanks for letting us know about your friends' experiences and your own. Thrilled to hear you're continuing to go in walks. There's something to gcmaf for at least a subset of us, i'm sure of it. Can you ask your friends if they got baseline c4a's done?

 

[mojoey]

doesn't labcorp forward the test to the National Jewish Center? I thought that was what shoemaker rec'd

 

[denlander]

If you are using Nagalase as a determination of GcMaf treatment use care in this assessment.
As I previously mentioned, ask for quality control tests that the lab has on file with an independent quality control for Nagalase. The tests are not a secret and should be available. The tests that we have seen were not reproducible.
We are continuing the injectable sterile GcMaf.
Derek Enlander MD
New York

 

[acer2000]

Has anyone tracked their NK cell function while on Gc-MAF? Or the other typically elevated CFS cytokines (IL-8 etc..). Curious if those markers improve as people feel better.

 

[lobba123]

does anybody know if redlabs or europeanlaboratory (ELN) measure IL-21?it is supposed to increase on my hbv infection but i haven t seen it on the list of cytokines

Has anyone tracked their NK cell function while on Gc-MAF? Or the other typically elevated CFS cytokines (IL-8 etc..). Curious if those markers improve as people feel better.

 

[perrier]

MAF 314

Is there any further news about MAF 314 results and its availability?

I am puzzled that there have been so many positive indications about this product and yet there is so little discussion in the news. What is Dr. Ruggiero's latest information?


I am a first time poster here and I look forward to learning from all of you.

Best regards,
Helene

PS: perhaps there is a different thread for this subject

 

[mellster]

Helene, the only info I have is that there are currently no MAF 314 workshops scheduled in Europe - not sure if it's regulatory issues or something else There could be an update in a couple of weeks on this.

 

[perrier]

Dr. Lapp on GcMaf

Thanks Mellster/Marco for your info. about MAF314

I just read,on the ProHealth site, Dr. Lapp's summary of the Ottawa conference. It's on their main page for ME

He is not endorsing GcMaf at all. He says it's the latest thing but that the patients he has spoken to have reported this treatment as a complete failure. He indicated that de Meirleir's and Cheney's test groups were not large at all and that side effects were legion.

This seems to counter many posts here about success and improvements.

Helene

 

[mellster]

I think it depends largely on whether you are a good responder and what subset you are. I have high hopes for MAF 314 for CFS/ME that plays put mainly in the stomach with IBS.

 

[Nielk]

Dr. Derek Enlander interviewing his patient on GcMAF,

http://www.youtube.com/watch?v=ueqHbhD5q4c

 

[Overstressed]

Hi all,

I guess everyone knows and reads the blog of Jamie Deckoff-Jones ? If not, you can find it here:

http://treatingxmrv.blogspot.com

If yes, there's this comment on her last blog ('Null Result'), more particularly from the well known Phd Michael Snyderman, which 'worries' me a bit. Let me post a part of his comment here:

" GcMAF. Yamamoto is not a physician and is probably not a PhD. He appears to have been a research technician in Philadelphia who set up the FOR PROFIT "Socrates Institute" and invented the term "nagalase." His publications demonstrate ups and downs of "nagalase" in patients with HIV and cancer in response to treatment with GcMAF yet never, ever supply any actual clinical data to prove benefit. He is said to believe based on this poor data that he can cure HIV and cancer so I would doubt any claims that GcMAF can benefit CFS. "

I don't want to upset anyone, not more than needed, but have we seen any objective measurement that Gc-Maf is of benefit to our health ? I have received more than 60 injections by now, my labs are improving, i.e. just regular bloodtests. BUT, I don't know if I can attribute that to Gc-Maf... I didn't have any of the 'fancy' bloodtests, like the Natural Killer function test, because I think this would proof my health was getting better. So, no objective measurement. Anyone ?

Yes, we have Nagalase...but, is that a biomarker ? There are examples within the HIV community where Nagalase goes down, and viral load even increases...


OS.

 

[perrier]

Hello OS:
Thanks for your points. I would be interested in hearing how your are feeling and functioning, however. Also, what about the role of Dr. Ruggiero in this work? He is not a fly-by-night physician. Are you a patient of Prof. K de M? Also, there is the work of Dr. Enlander which was cited by a link on this thread. He speaks positively about this treatment. Cheers, Helene

 

[leela]

Let us not forget that the entire medical system is FOR PROFIT.
There is almost no pure research any more, and even "compassionate use" clauses for unapproved treatments often have restrictions on them to support conventional, big-profit methods.

The only way researchers who are not sponsored by corporate/gov't funds can do their work is to make a profit. Drug trials are so expensive
(thank you FDA cabal) that only the top-tier companies can remotely afford to get to trials. The system is rigged.

Pharmaceuticals are for profit. Health care is for profit. Insurance coverage is for profit. Research institutions are now for-profit (patents, test kits, etc.)

So whether or not GcMAf is effective, and whether or not Yamamoto has the "desired" credentials, that his organisation is for profit is an
entirely moot point in the current climate.

No one works for free.
I totally don't understand that point in Dr S's comment.

 

[Overstressed]

Hi Leela,

let's ignore the 'profit' aspect of his comment(although I fully agree with you!), I think there's a more important remark he makes:

"(...)and invented the term "nagalase." His publications demonstrate ups and downs of "nagalase" in patients with HIV and cancer in response to treatment with GcMAF yet never, ever supply any actual clinical data to prove benefit. He is said to believe based on this poor data that he can cure HIV and cancer so I would doubt any claims that GcMAF can benefit CFS. "

Helene
How I feel and function is a difficult one, how can you be objective in such a subjective matter ? I have still good episodes, and bad ones, like today. Maybe, the difference is that I have very good episodes, and bad ones. Yes, that's a good description, one that's nearest to the truth.

I'm not a patient of KDM and I can't comment on Dr. Enlander nor Prof. Ruggiero. I think what the community needs is some (lab)proof of patients on Gc-Maf.

OS.

 

[Sushi]

I think what the community needs is some (lab)proof of patients on Gc-Maf.

OS.

Yes, we need lab "proofs" or studies and they are coming, but the experience with GcMAF in ME patients is quite new and before things get published, all the "ducks need to be in order." That is what is going on now. There is a lot of data but it has to be presented according to accepted academic standards and this is a slow process.

Also, independent research is being done on nagalase and will also be published.

Having said that, I know some who have improved dramatically with GcMAF, others who have not improved at all, and others who have improved moderately. The main doctors who are using GcMAF in many patients are doing regular labs as they also want to know what it is doing in measurable terms. Both Dr. Cheney and Dr. Ruggiero have recently published the reports of small studies.

Best,
Sushi

 

[mojoey]

In the same comment about the "for-profit" nature of the Socrates institute (and I completely agree with Leela's assessment of this point), Dr. Snyderman says:

"1. Ampligen. Despite years of patients paying to be in a so called research study, there is no clinical data published in a peer reviewed journal to support its benefit to CFS patients."

Was his data that suggests improvement from ARVs published in a peer reviewed journal? Why is he putting on these blinders when it comes to ampligen which clearly has shown tremendous benefit in a subset of CFS patients, including documented improvement with NK cells?

 

[mellster]

I agree with mojoey here, it was said to help quite a few (about 1/3 if I remember correctly), but even if it only helps a subset dramatically it is worth trying it IMO.