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

mojoey

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I probably won't have time to input stuff for everyone so rivka you can go ahead and edit the questions as you see fit. Like I said, anyone that sees that link can view and edit it. It's like a collective paper mch using all hands on deck ;)

joey to the rescue! thanks!!!!!

can you add these questions, too:

- how are you taking the GcMAF (IV, IM, sublingual)
- are you also on Nexavir, Cell Signaling Factors (Cheney's Nexavir alternative) and Artesunate, too?
 

leela

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WHat a great thing, Joey, and everyone. I especially appreciate Joey taking time out for the old farts since he has his own group now for the less wrinkly generation :cool:
 

mojoey

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oh please leela. young CFS patients are just as much farts. although i've been doing better without the legumes...
 

Sushi

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Sergio and Sushi,

Did KDM prescribe Nexavir and Artesunate to you, too? If so, how much? THANK YOU for your reports!
Hi Rivka,

No he didn't right now. He wants to see our test results before he makes the rest of the treatment plan. For me, he may not prescribe artesunate cause my inflammatory cytokines weren't bad.

Been out for the count today--exacerbation of all my classic symptoms. Funny, this hit on Sunday when my injection was Tues. Felt really bad today, but coming back to life around bedtime.

Sushi
 

anncavan

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Re: Lyme treatment and GcMAF

I'm not sure I'm following the train of thought around Lyme. I've read the entire string. Is it that we don't have people being treated with GcMAF in the string that happen to be under heavy antibiotic Lyme treatment at the moment? Or is it simply not allowed while on GcMAF?

Thanks!
 

acer2000

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I was at the Santa Rosa talk. What I wrote down, and remember quite clearly due to my own personal results of serology negative/culture positive was that the sickest patients were coming up negative in serology. This was because they were so ill their body wasn't producing antibodies. Therefore, this would make Sergio's comments make sense regarding our B cells being too affected to produce antibodies.

This doesn't make a whole lot of sense to me. Is she saying that XMRV can selectively tell B cells not to make antibodies to itself, but continue to make antibodies to other pathogens? I fall into the category of people who have repeatedly tested culture positive, but my serology test was negative. However, my body has no problem making antibodies to pretty much any other pathogen I have been exposed to. I'd expect that if my body was "too sick to make antibodies", that it wouldn't be making these... Is there scientific precedence to this?
 

acer2000

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Also, does anyone know what the risks of getting other blood borne pathogens from GcMAF is? Its a human derived blood product isn't it? Not trying to scare anyone, this might not even apply. But I am curious - is this a concern?
 

anncavan

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Wanted to jump in as it was my comment quoted. I have to admit, I have NO IDEA :) Sorry. I'm positive I remember that part clearly. There were some sections a little fuzzier than others. But I know that's what I heard. But I don't understand it per say. Sorry.

Science geeks - please jump in... I mean that in the most loving of ways btw!
 

Cort

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I was at the Santa Rosa talk. What I wrote down, and remember quite clearly due to my own personal results of serology negative/culture positive was that the sickest patients were coming up negative in serology. This was because they were so ill their body wasn't producing antibodies. Therefore, this would make Sergio's comments make sense regarding our B cells being too affected to produce antibodies.

I wrote a review about this presentation, including that tidbit. If you haven't seen it, you can find the 2-parter with slides here: http://lannieinthelymelight.blogspot.com/2011/01/part-1-11711-xmrv-presentation-by-dr.html

And just a general comment. This string is AMAZING! There are a so many committed, caring people on this - gathering information, sharing experiences, organizing the learnings for all to use. THANK YOU, THANK YOU, THANK YOU!
Maybe that explains why I, who am relatively healthier, barely tested positive by culture, but had a smacking strong antibody test.....may be I fit the picture anyway...I guess what we really need is statistical data....and, of course, validated testing, blah, blah, blah..
 

RivkaRivka

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Re: Lyme treatment and GcMAF

I'm not sure I'm following the train of thought around Lyme. I've read the entire string. Is it that we don't have people being treated with GcMAF in the string that happen to be under heavy antibiotic Lyme treatment at the moment? Or is it simply not allowed while on GcMAF?

Thanks!
i have heard from a respected source (i can not disclose) that taking antibiotics at the same time as gcmaf makes the gcmaf less effective.
 

maryb

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Rivka I was prescribed a/biotics and gcmaf at the same time - fortunately perhaps I am not up to doing both at present so will just continue on the abx - thanks for the info.
 

Lou

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Hi Sushi and Sergio,

Hey guys, welcome back, and I think we're all glad you've gotten 'gcmaffed'. That was a bit of a bombshell thrown for us takng BGLI gcmaf. You have reliabe sources telling you it may be dangerous? What gives? I mean, if they're going to make such statments then let's be out in the open. How is it dangerous and who says so and do they have conflicts of interests? Man, just when I thought something good was happening.

Something else that doesn't make sense is that we've previously been told numerous times that Dr. Cheney is using BGLI, and that, BY FAR, is what convinced and gave me confidence to use this company. Also, trusted a previous poster, Carla, that said there were these problems with David Noakes product, and that she herself used BGLI. Course, I don't see her posting here any longer, either. And also, if your source is KDM, and KDM and Cheney network then how does that add up? Or, has Cheney soured on the company, too?

If you both could just picture for a moment the impact of that statement. Here, some of us have spent considerable money, time and effort to get the treatment, and it's an ongoing process, and then we hear this, and you're advising us to stop until further data is presented with no time frame mentioned. Please don't misunderstand, I know you are genuinely trying to help, that your intentions are the best. I appreciate that, and thanks for your important roles in this and other threads. It just you're leaving me kind of twisting in the wind here.

Any enlightment on these questions would be much appreciated.

Wishing you the best,

Lou
 

Riley

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I believe Joey has raised the point elsewhere that all of the sources of GcMAF are in a sort of competition with each other. Therefore any information one gives about the other must be taken with a healthy dose of skepticism. So far I have seen reports of each saying only their (KDM, BLGLI, Yamamoto) GcMAF is effective or safe. Therefore, one must take a sort of leap of faith with whatever GcMAF is available to them or wait for independent research or testing to sort out the competing claims.
 
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To Lou

You perhaps don't know that Carla / Christel / Ingrid are one and the same person, and she works for BGLI.

Our GcMAF has always been good. Its probably the most exhaustively tested GcMAF there is, with the exception of Jim Tassano's of California, which was excellent.

David Noakes.

.
 

serg1942

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Hi Lou,
Please let me first make clear to everyone that I did not say it was KDM who told me about BGLI GcMAF.

This is what I wrote:

From some persons (that I do consider reliable sources), we were warned about the possible danger of BGLI’s GcMAF. I really recommend all of you living in the USA not to take BGLI for the moment, until more data is available.
meaning exactly what I wrote: that I talked to a few persons, that I, as an humble layman patient, consider reliable sources, who warned me about BGLI GcMAF. That's it. Whether their warning is true or not (or to what degree), that I don't know. I am not allowed to tell more, and I thought it was my duty to say what I am allowed to say.

I am not a doctor, and I have not any financial involvement with any GcMAF source or provider. So I am sorry to worry those taking BGLI GcMAF.

As far as the antibodies discussion, this is what I think: Our B cells are weaker than they should, but they still work (otherwise we would be dead). The differences between finding XMRV antibodies and other typical pathogen antibodies are: 1- XMRV virus is very difficult to find in blood; 2- XMRV antibody test is still very unreliable, therefore it makes it harder to "catch" the antibodies --For example, it does not detect the antibodies bound to the virus.

I think I have some questions left to answer. I will ASAP. Right now I am feeling awful. i think GcMAF is kicking in, and I am suffering from die-off, IRIS, or whatever it is...

Best,
Sergio
 

undcvr

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As far as the antibodies discussion, this is what I think: Our B cells are weaker than they should, but they still work (otherwise we would be dead). The differences between finding XMRV antibodies and other typical pathogen antibodies are: 1- XMRV virus is very difficult to find in blood; 2- XMRV antibody test is still very unreliable, therefore it makes it harder to "catch" the antibodies --For example, it does not detect the antibodies bound to the virus.

I have been very curious about this concept for a long time becos Rituximab and some other chemo treatments depend on wiping out all our Bcells for the therapy to be successful. How do they keep the patient alive while that is happening ?
 

Sushi

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Hi Sushi and Sergio,

That was a bit of a bombshell thrown for us takng BGLI gcmaf. You have reliabe sources telling you it may be dangerous? What gives? I mean, if they're going to make such statments then let's be out in the open. How is it dangerous and who says so and do they have conflicts of interests? Man, just when I thought something good was happening.

Something else that doesn't make sense is that we've previously been told numerous times that Dr. Cheney is using BGLI, and that, BY FAR, is what convinced and gave me confidence to use this company. Also, trusted a previous poster, Carla, that said there were these problems with David Noakes product, and that she herself used BGLI. Course, I don't see her posting here any longer, either. And also, if your source is KDM, and KDM and Cheney network then how does that add up? Or, has Cheney soured on the company, too?

If you both could just picture for a moment the impact of that statement. Here, some of us have spent considerable money, time and effort to get the treatment, and it's an ongoing process, and then we hear this, and you're advising us to stop until further data is presented with no time frame mentioned. It just you're leaving me kind of twisting in the wind here.

Any enlightment on these questions would be much appreciated.

Wishing you the best,

Lou
Hi Lou,

Really don't want anyone "twisting in the wind!" Sorry!

At the same time, I think it would irresponsible not to pass on a concern we heard from a reliable source (and sorry we can't name this source). I don't think anyone has heard of negative reactions from patients taking the BGLI product, but, it is a human blood product and as such we all want to be cautious about the source and the level of quality control. By raising the concern (and we wouldn't have if we didn't think the source were reliable) it gives people to chance to investigate further--I think that would be important to me.

A lab that is making and supplying GcMAF should be willing to answer questions from patients and doctors and provide any documentation requested. I think I would want to do this whether or not someone raised concerns.


Yes, Dr. Cheney is using the BGLI product and he is a thorough physician. I believe that he and KDM are in touch about GcMAF protocols and the only reason I could guess as to why they are using different sources is the issue of getting the product into the US -- the BGLI product seems easier to get into the States without physically bringing it with you.

I guess if I were taking the BGLI product I would just check it out for myself, either through Dr. Cheney or directly with the lab.

Best intentions, really!

Sushi