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

I don't know anyone taking it but this is what I'm interested in. This and Peptide T. Thanks for posting this Sushi.

See this thread for details of a trial:

http://www.forums.aboutmecfs.org/showthread.php?5345-GcMAF-trial

Jenny

Hi Sushi

I did contact them and got into some email correspondence about the trial. It was very unclear to me what the trial involved and I really didn't understand some of the emails. I recently got another email from the person I had corresponded with that said she was leaving the organization for reasons that were unclear.

Because of all this, and also because I've a bit wary of immune modulators after a bad experience with LDN, I didn't sign up. I know others were interested though.

Jenny

There has been some organizational disagreement at gcmaf.eu but the upshot is that just means more cottage industries are popping up. Gcmaf.eu unfortunately didn't ship worldwide so that doesn't do US patients any good. I'm in contact with a team trying to manufacture another version and ship worldwide. Assays are done in the lab to ensure there is functionally active gcmaf in this version, just as they were done by David's science team at gcmaf.eu. When I have permission to release the information here I will.

As for whether is has worked to inactivate xmrv, the consensus between all teams I've spoken with as well as Kenny de meirleir patients is quite mixed. It has led to some functional improvement but cfs patients are far more likely to be oversensitive to the histamine and macrophage response than HIV pos patients. It will take some time before patients have been on it long enough to make definitive judgments, but based on preliminary data I think that taking gcmaf alone will not be enough.

Btw sushi, if you talk with Yamamoto he will say the synthetics being manufactured in Europe make patients sicker. I know of researchers that have access to both his gcmaf and the others and will be testing his hypothesis based on both assays and diagnostics. I believe Yamamoto has good intentions but he has been trying to patent his product for a long time. Because of HAART and what a FDA-approved gcmaf might do to drug companies I strongly believe he will not succeed. Until then he will continue to point you in the direction of shots that cost 750-1000 each; most patients cannot afford to travel to Israel and Germany, let alone pay for the shots. He does give out his shots for free for clinical trials but he only works with doctors that are NDA-approved to run clinical trials.

I really hope we get to the bottom of this. If the synthetics are shown to be wildly inferior to yamamoto's, we must dissuade and discontinue. If not, I believe patients in the US will soon have access to it.

thank you m0joey for all the info! Do you think GcMAF is as effective as Yamamoto claims it to be? I'm hiv positive and I'd like to buy it from the Isreali company. It's extremely expensive for me but of course I wouldn't regret the money if I got cured.
Are you saying that gcmaf.eu is selling synthetic gcmaf, meaning it doesn't originate from human blood? I had no idea that was the case. I know Christel once wrote that their gcmaf contains both human and animal DNA.

Actually I just clarified with my contact and she's not sure gcmaf.eu's version is synthetic. That was my impression from folks earlier.

The new version made by a separate lab is entirely made from natural components.

I really can't say if it's as effective as he claims it to be for HIV. I wish I knew.

Is DeMeirleir using Yamamotos GCMAF or the synthetics? I didn't catch that one...

Sorry acer I can't answer that question. Maybe a KDM patient can step in here and answer that.

Hi all,

I've been on GcMaf and just received my 9th injection. I get this GcMaf through my doctor homeopath, and I improved dramatically after only 3 injections. Although my food intolerances improved, I still have the feeling that after 3 days, after my injection, this intolerance comes back, but every time a little less. My ear buzzing got a bit better, and as long my body over produces histamine, it will not clear up.

Only last week I got a big set back...and I think that it was because I was doing so much, my energy level is even better as it was before I became ill. I was too optimistic about that, also, I was not looking at what I ate/drank. I enjoyed my wine again, drank my cappuccino's... This came back as a boomerang right in my face. I need to accept that I might feel good - energy-wise- but not healed, not by far...only maybe on the right track. What makes me anxious is that this virus might have caused irrepairable damage that can not be corrected by Gc-Maf...alone.

Conclusion: Energy-wise I got better after 3 injections and this is still to date the case - overall, I still have a long way to go, my muscles in my legs have completely dissappeared and this makes me depressed. I was very athletic, and in the first course of my illness I gained a lot of weigth, thanks to GcMaf I lost most of my gained weigth. Some processes are reversing, my skin looks better hydrated, and maybe most important thing of all, and most objective measurement, my labs. I did a complete bloodwork, and a CD4/CD8 panel, and my immune status improved since last year. My CD4/CD8 ratio went up from 1.43 to 1.52.

OS.

Hi Overstressed,

Thanks for sharing your experience with GcMaf. Its great to hear that you've had some dramatic improvements in energy and an improvement in immune markers. Sorry to hear about the other problems that have developed its understandable why you feel discouraged by this. I wonder by what mechanism does the GcMaf cause u to lose weight, do u have any idea?

Sorry that you relapsed after lapsing on your diet I can understand how tempting it is to slip back into old habits when we start to feel a bit better!

Do u mind if i ask u what your energy levels were like when u were ill? Would u say that u were mildly, moderately or severely affected? Also have u had any improvements in cognitive function from the GcMaf?

How often do u have the injections?

Thanks

Hi froufox,

I was moderately affected, I'm still working full-time, but I came to a level -before I started on gcmaf- that I was only 50% productive, anymore, with lot's of cognitive diificulties. I'm a software engineer, and it affected my work terribly. If it stayed that way, I'm sure I would lose my job. Gc-Maf has also improved my cognitive functioning very well until now. I became ill 3 years back, and got worse after my vaccination against the mexican flu. No more vaccination for me, though.

I receive these injections once a week, but I was told that receiving gcmaf via IV is more effective. So, I'll ask my doc if he will give it to me that way. I don't know whether gcmaf causes my weight loss, because I started taking Milk Thistle before, mainly because my liver function was disturbed. And you know, Milk Thistle improves your digestion. Personally I think both(gc-maf+MT) work on eachother, causing weight loss. I don't mind, I gained a lot of weight, I had a lot of problems with constipation, my food got not digested at all.

OS.

Hi OS

Thnx a lot for your reply. Sorry I misread your original post about the weight loss so I'm glad to hear that the GcMAf plus perhaps the milk thistle too as u say helped you lost the weight that u had gained.

Thats great that you are functioning enough to still be able to work full-time and that the GcMaf prevented u from getting any worse. It would be very interesting to know if GcMaf proves to be beneficial to other more severely affected patients too. I have to say that it certainly does sound like a very interesting treatment and I have been considering trying it myself.

Its also very encouraging to hear about the cognitive improvements that you have had too.

Good luck with getting it via IV, I had not heard of people getting it that way and i guess as with other treatments its not surprising that that would be even more effective.

I can relate to the vaccine issue my ME was triggered by a vaccine and I would be very wary of getting any more.

I hope u continue to improve, all the best.

Hi Sushi,

well, I'm speculating a lot, I don't know which 'version' of GcMaf I'm getting, but I'm pretty sure it's not the real one. I just heard today the discussion about a synthetic GcMaf, but really no idea. I have asked my doc a few times, and he keeps saying it's gcmaf. I guess he doesn't know either.

OS.

I'd like to draw everyone's attention to a few paragraphs from Yamamoto's paper published in '96:

When peripheral blood monocytes/macrophages (designated as macrophages hereafter) of 258 cancer patients bearing various types of cancer were treated in vitro with 100 pg GcMAF/ml, macrophages of all cancer patients were activated for phagocyticand superoxide generating capacity. This observation indicates that cancer patient macrophages are capable of being activated. However, the MAF precursor activity of plasma Gc protein was lost or reduced in approximately 70% of this cancer patientpopulation. Loss of the MAF precursor activity prevents generation of MAF. Therefore, macrophage activation cannot develop in certain cancer patients. Since macrophage activation is the first step in the immune development cascade, such cancerpatients become immunosuppressed. This may explain at least in part why cancer patients die from overwhelming infection. Lost or reduced precursor activity of Gc protein was found to be due to deglycosylation of plasma Gc protein by.alpha.-N-acetylgalactosaminidase detected in cancer patient blood stream. Deglycosylated Gc protein cannot be converted to MAF (FIG. 1b).

Similarly, when peripheral blood macrophages of 160 HIV-infected/AIDS patients were treated in vitro with 100 pg GcMAF/ml, macrophages of all patients were activated for phagocytic and superoxide generating capacity. However, the MAF precursoractivity of plasma Gc protein was low in approximately 35% of the HIV-infected patient population. As in cancer patients, these patients' plasma Gc protein is deglycosylated by .alpha.-N-acetylgalactosaminidase detected in HIV-infected patients.

Both cancer and HIV-infected patients having severely decreased precursor activity of plasma Gc protein carried large amounts of .alpha.-N-acetylgalactosaminidase while patients having moderately decreased precursor activity had moderate levelsof plasma .alpha.-N-acetylgalactosaminidase activities. Patients with high precursor activity, including asymptomatic HIV-infected patients, had low but significant levels of plasma .alpha.-N-acetylgalactosaminidase activity. Since a large amount (260.mu.g/ml) of Gc protein exists in the blood stream, a low level of the enzyme does not affect the precursor activity. Nevertheless, .alpha.-N-acetylgalactosaminidase activity was found in plasmas of all cancer and HIV-infected patients and had aninverse correlation with the precursor activity of their plasma Gc protein (Yamamoto et al., AIDS Res. Human Ret. 11:1373, 1995). Thus, increase in patient plasma .alpha.-N-acetylgalactosaminidase activity is responsible for decrease in the precursoractivity of plasma Gc protein. These observations lead us to propose that plasma .alpha.-N-acetylgalactosaminidase plays a role in immunosuppression in cancer and HIV-infected/AIDS patients.

I don't know what to think of this. Could high Nagalase level be the main limitation of gcmaf? Does that mean that people with a very high level of Nagalase should be given more than 100 ng of gcmaf every week?

Hey Moonwalker,

Not sure if high nagalase is a way to differentiate treatment outcome, but due to oversensitivity, immune dysfunction issues that CFS patients often deal with, it is highly recommended to not exceed the 100ng/week dosage, and furthermore to scale up slowly starting from 1/5 of that dosage per week. The histamine reaction can otherwise be intolerable and even cause harm, not to mention the resulting IRIS (immune reconstitution) issues AIDS and CFS patients share which can be an awfully rough means to a, hopefully, calmer end.

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Hi M0joey,
I am thinking of giving Gcmaf a try. In other messages I read that you know a few De Meirleir patients who are taking it, and I would like to contact them as well to get more information. Is it okay if I sent you a pm about this? Thanks