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

[anncavan]

WOW. I didn't think it was possible, but I just read this entire string in one sitting. Time for bed! But before that, a few questions...

1) Anyone on GcMAF with Chronic Lyme Disease? Are you able to treat with abx during treatment?

2) Anyone on GcMAF following an antiviral protocol, say Valcyte for HHV6 and Valtrex/Famvir for EBV. Are you able to stay on antivirals during GcMAF?

3) @Froufox’s comment about Nexavir/Hepapressin was very interesting to me. Does any antiviral “block XMRV into the cells adn prevent re-infection of other cells", or just these two specifically? And are all doctors prescribing the Nexavir w GcMAF, or only KDL?

4) Do we run into an issue of this not working as quickly or effectively for XMRV+ vs. HIV/AIDS patients since XMRV does not replicate as fast?

5) Once people are off this, just as we’ve seen with Ampligen, are we worried about relapses? Is it suggested to continue with something specific after such as a low dose of antiviral or you name it?

6) And am I correct in gathering mojoey has already started and completed a full course of GcMAF?

Any info for any of these would be greatly appreciated!!!
Lannie

 

[anncavan]

FYI - Email from David Noakes of www.gcmaf.co.uk/info/

MY EMAIL TO DAVID:
Hello David,

Fantastic website. Very informative. I am writing as an XMRV+, Chronic Lyme Disease and ME/CFS patient. I have very high EBV and HHV6 titers, my CD57 is extremely low, and my Lyme is still very active. I have been ill for over 3 years.

I am currently on Valcyte(antiviral) for HHV6 and Famvir (antiviral) for EBV. I've recently just stopped antibiotics for Lyme as my doctor believes until my viruses get under control my Lyme will not budge.

Is a patient able to continuing taking other medications, such as antivirals, antiretrovirals and/or antibiotics when taking gcmaf?

Thank you kindly,

HIS RESPONSE:
We are not doctors, we are manufacturers, and we know little about your conditions, as most of our participants have been late stage cancer.


We have had one Dutch woman who went from existing on a couch, not working, no social life, and after taking our GcMAF has now got her life back. But she will not allow herself to be a reference.


We suggest you drop anything that suppresses the immune system; otherwise, yes, you can take other treatments with GcMAF.


David Noakes. 0044 752 844 1672
davidjnoakes@yahoo.co.uk

 

[mojoey]

Hey Ann,

There have been some conflicting reports about David noakes and the product he is using. Most patients now are going either with BGLI or KDM. The Israeli version (yamamoto's) is out of the financial reach of most, even more so than ampligen (although if patients don't relapse upon ending treatment it may cost far far less than amp in the long run).

I assumed that the quality of BGLI was subpar vis a vis KDM's but I have heard very positive reports now from patients i trust using both. This is probably the most promising, moderately affordable treatment for us we have ever seen. It is not immunovir and it is not chanca piedra. There is a reason those are easily allowed past united states customs and
gcmaf is not: gcmaf officially poses a threat to big pharma.

Let's just hope we aren't completely begrudged of this. Some top me/Cfs doctors are working in alternative avenues for US patients to get the drug, and I know of one option if it materializes that sounds especially promising for those that are able to travel to Central America. Much more will be known both about these options and the true efficacy of this
drug for Cfs patients with varying VDR genotypes in a few more months, thanks to the willingness of pioneers such as froufox, sushi, Garcia, serg, overstressed, and others to report their progress here. I have the utmost gratitude and respect for you guys. Without you and the opportunity PR has allowed for us to consolidate feedback, we'd probably still be relying on complete hearsay about some mystical drug.

 

[anncavan]

Thanks MoJoey, I'm most interested in the idea of being able to stay on my antivirals while on this... I'm still not clear on if this is possible. Nexavir is prescribed with it. But I don't know if Valcyte/Famvir would be complementary like it, or get in the was of effectiveness...

 

[mojoey]

Hey Ann,

To clarify about my use of gcmaf, I am not permitted to discuss the source of gcmaf that I used, only that it was not noakes', BGLI, or KDM's. It was a precursor to a formula being used now, so I don't consider my experience entirely relevant to discussion of current formulas.

Also, the product I was using condensed in the refrigerate to the extent of virtually disappearing before reached 6 weeks of treatment. Therefore the potency of the product may have been lost due to my failure to freeze it.

All said, I would try gcmaf again. What's stopping me is the unresolved VDR status debate.

 

[mojoey]

Thanks MoJoey, I'm most interested in the idea of being able to stay on my antivirals while on this... I'm still not clear on if this is possible. Nexavir is prescribed with it. But I don't know if Valcyte/Famvir would be complementary like it, or get in the was of effectiveness...

Gcmaf increase macrophage activity. Antiviral block replication of virus inside cells. I don't see how the two could conflict but maybe others know something about this equation I don't. KDM only discusses using HAART if gcmaf doesnt work, but that may have to do with doing a controlled pilot study of gcmaf and not skewing his data with use of HAART. However that doesn't explain why he would advocate nexavir at the same time as gcmaf when nexavir has been shown to have antiviral activity

 

[acer2000]

Hey Ann,

There have been some conflicting reports about David noakes and the product he is using. Most patients now are going either with BGLI or KDM. The Israeli version (yamamoto's) is out of the financial reach of most, even more so than ampligen (although if patients don't relapse upon ending treatment it may cost far far less than amp in the long run).

Can you get the yamamoto version if you are in Israel?

 

[mojoey]

yes. you can also get it from a doctor in germany.

 

[alexk201]

Hey mojoey, any idea how much the Israeli version costs? Also, would you happen to know if it's superior to KDM's version?

 

[mojoey]

I think Israel is about 1k/shot and Germany is similar. Depends on the exchange rate conversion but no matter how u spin it, it's many times over BGLI and KDM's. Of course I've heard the price tag has to do with the product costing a few hundred euros to produce, which begs the question of how on earth BGLI and KDM's were produced. My guess is they're at best a hybrid of porcine and human (Israel is 100% human) and at worst all porcine.

No one knows how efficacy ranks. The people testing it have vested interests: we need an independent company to run assays and potency tests

Hey mojoey, any idea how much the Israeli version costs? Also, would you happen to know if it's superior to KDM's version?

 

[leela]

we need an independent company to run assays and potency tests

you said that right, brother! can we have that NOW please?

 

[RivkaRivka]

joey: human? pig? can you tell us more about what GcMAF *is*?

 

[leela]

btw nexavir is also derived from pig (liver)

 

[Sushi]

btw nexavir is also derived from pig (liver)

Guess my next post will be "Oink!" (Hey, we are going to need a piggie icon!)

Sushi

 

[Riley]

Has anyone heard of any PWC's trying the Israeli GcMAF (sounds like a secret weapon ), and if so what were their results?

 

[RivkaRivka]

i have communicated with dr mikovits through a third party re: GcMAF, and her (mikovits's) understanding of the action of GcMAF causes some concern over whether it would be sufficient on its own to treat XMRV, due to the possibility it could activate virus reservoir, and that she believes clinical trials are necessary to know what the actual outcome will be, and what the most effective and safe treatments for XMRV will be. People SHOULD NOT be making clinical decisions based on this opinion, but should be consulting their physician.

rivka's note: this is sort of what she said about stem cells. i think that in general, she can't comment on treatments. but it is interesting that she says that it could activate virus reservoirs. with stem cells, she had said she worried that it could stimulate xmrv, or something to that effect.

 

[Crappy]

I am no chemist. I wonder if it were possible for a few of us to pool the resources and create our own GcMAF, and just help each other; if that would meet with legal resistance?

Somewhere, I have run across the "recipe" for creating it, to a trained eye, it may not be that difficult. I have run across a resource for measuring its concentration.
http://www.rndsystems.com/pdf/DVDBP0.pdf

GcMAF is a single sugar molecule bound to a single protein molecule, what if all you had to do is cook something like lysine or methionine with fructose or sucrose to make it, ha!

Also, I have seem to have found two manufacturers in the U. S. that prepare it for research purposes. Who only sell to researchers.

I don't really comprehend why were are not allowed to try GcMAF in the U.S. if we prefer? Our illness after a quarter of a century still receives no recognition. We are Guinea Pigs for our practitioners, and always have been. Insurance refuses the expense of treating us. Thousands of government drones, and other grant funded drones cannot come up with a conclusive test or treatment. The FDA wants to test and verify if GcMAF is effective in treating what, if I understand the FDA's position, we aren't even sick?
I know a Dr. in Mexico, just over the border, who dabbles in experimental treatments. He may be interested in helping. Our lives are not the FDA's or the U.S. governments, we have the power to decide what to do with them. Susan Somers told the FDA, up yours, went outside the U.S. and saved her health and likely her life in doing it! And she wasn't the first or the last!

 

[cansado]

i have communicated with dr mikovits through a third party re: GcMAF, and her (mikovits's) understanding of the action of GcMAF causes some concern over whether it would be sufficient on its own to treat XMRV, due to the possibility it could activate virus reservoir, and that she believes clinical trials are necessary to know what the actual outcome will be, and what the most effective and safe treatments for XMRV will be. People SHOULD NOT be making clinical decisions based on this opinion, but should be consulting their physician.

.

Before I was XMRV+ both saliva and blood but after the gcmaf treatment I am testing negative!!! LGS seems also a lot better. But I still suffer from a lot of brainfog/concentration problems while on gcmaf therefore I don't write a lot. I have had 22 injections, and I am not feeling much improvement.

 

[Alexia]

Hi Cansado,

Thank you very much for sharing your experience. What you say is very interesting... if you are XMRV negative after taking Gc MAF and are not feeling better it can be that you don't have XMRV any more but the body is still suffering from the destructive effects of XMRV.
The same happens with Helicobater Pylori. I was positive for HP and after treatment I was negative but the stomach pain didn't improve until I addressed the inflammation that the Pylori had caused and also took betaine to replace stomach acid because the H. Pylori had destroyed the cells that produce stomach acid. I was told this is a common problem with H Pylori.. first we need to kill it and than to treat the devastating effects that the bacteria caused and only than people feel better.

Good luck, maybe soon you will feel better .

 

[RivkaRivka]

cansado,

thank you for reporting in to us! can you tell us more? like:

- where did you get tested for xmrv? were both tests from the same lab? which xmrv test did you do, was it the culture test both times?
- where are you getting your GcMAF?
- have any of your cfs symptoms gotten better?
- what is LGS (which you say has improved)?
- did you get your VDR tested?

we are routing for you!!!! and we are grateful to you for reporting in.

best,
rivka