Monday, May 2, 2011

GcMAF

(This post will be an exercise on and a lesson in limitations. I've been putting off writing it, waiting until I had enough energy to "make it a really good one" with links and quotes and everything. But I get it now that that's just not going to happen.)

I had my third appointment with Dr. Cheney in March. He is putting some patients on GcMAF now and I said I wanted to start. It was a long process of preliminary blood testing, most of the results I am still waiting for, but I finally got my order through and I think it is shipping today from The Netherlands. If there's no problem at customs it could be here this time next week.

I don't know if I'll be able to start taking it right away, or if I have to wait for more test results. Vitamin D levels are important. I know mine are usually very low. Two years ago my endocrinologist told me mine were the lowest in her practice.

Low vitamin D levels are associated with failure to respond to GcMAF. So I might need to supplement before I start.

With GcMAF there is an Immune Resuscitation Inflammatory Syndrome response, (IRIS) that could last a few days or two weeks. The lower your vitamin D levels, the worse it is, usually. That scares me a little. IRIS means flulike symptoms. The last time I had the flu was, well, scary and unbearable.

Dr. Cheney read me an excessively cheerful email from a patient who was having a positive reaction to GcMAF. I remember he said he was sleeping better and waking up refreshed and able to do much more during the day.

There are also two patients who didn't respond at all. And this makes sense, because they both have the "VDR haplotype polymorphism" which predicts failure to respond in patients with HIV. I've been tested for this but I don't know the results yet. If I have it, it will be crushing. But Dr. Cheney is not yet convinced it is a impossible to work around. He is giving them higher doses of GcMAF and thinks they might respond.

If you are wondering what GcMAF is, don't bother looking on Wikipedia. Until recently there was no entry. Now I think there is one sentence.

I'm just going to paraphrase/quote from Dr. Cheney's GcMAF Protocol and Consent Form, and we'll figure it out together:

GcMAF was discovered by Dr. Nobuto Yamamoto at Temple University in 1990. (The GcMAF wikipedia page sites Dr. Yamamoto's papers.) "He patented a method to semi-synthetially reproduce GcMAF in 1993, (now expired) and by 2002 began to conduct studies using this semi-synthetic derivative in both HIV and cancer patients."

What is GcMAF?

"GcMAF is a partially deglycosylated (?) vitamin D binding protein (DBP) also known as the Gc protein."

(?) So it's a "glycoprotein" with the sugar (glyco) taken off.

What the protein normally does, is bind and carry vitamin D, but in an immune response will be acted on by a specific enzyme that "deglycosylates" it, which changes it's function. So now, as GcMAF, it will "activate, regulate, and expand macrophages" Macrophages are a kind of white blood cell, "the central processing unit of the immune system and capable of modulating and controlling both the innate and cognate immune systems."

So basically, GcMAF is an important part of the immune response. Theoretically, some of my macrophages are not being activated, and they need to be.

NAGALASE

Nagalase, an enzyme also discovered by Yamamoto, destroys GcMAF, "with subsequent loss of effective imunologic function and potential dysregulation of the immune system ensues." Nagalase is found in "most patients with HIV and cancer as well as some autoimmune diseases"

When I was talking with Dr. Cheney, I got the impression that nagalase was actually produced by HIV and other retroviruses, but I can't find that written down. It does say that "Nagalase activity was found to be a better biomarker for clinical status of HIV infected patients than more traditional biomarkers such as the CD4 count."

I am being tested for nagalase activity, but I won't know the results for weeks. I do know that he's had a number of patients tested and they all came back positive.

The impression I got was, that even if XMRV turns out to be a lab contaminant (and I got the distinct impression he doesn't think it will) that nagalase activity in CFS patients points to a retroviral cause anyway.

If you've googled GcMAF, as I have, you'll probably end up looking at a copy of Dr. Yamamoto's 2009 paper Immunotherapy of HIV-infected patients with Gc protien-derived macrophage activating Factor (GcMAF) in the Journal of Medical Virology. Which "demonstrate(s) the utility of GcMAF in eradicating HIV in non-AIDS patients and even maintaining such eradication for years after GcMAF therapy was discontinued. In other words, his GcMAF therapy appears to be able to cure HIV in certain classes of patients and render the patient immune from HIV infection."

So why doesn't everyone know about this?

Apparently, Dr. Yamamoto is "reclusive and unapproachable." And ostensibly not a promising source of revenue. (Though the GcMAF I am ordering from BGLI is not cheap, but maybe it is by prescription drug standards. I don't know.)

More quotes from the protocol:

"His methods of patent in 1993 was inherently weak as GcMAF, as a natural substance, cannot itself be patented and no large commercial interest ever bought a license from Yamamoto to improve the rate and quality of GcMAF clinical studies and make high quality GcMAF widely available"

This is supposedly why we all have not heard of it.

"To make matters worse, there have emerged many GcMAF products, available on the internet from around the world, of questionable quality and efficacy...There are also some fairly severe though transient side effects in a few patients that need physician assistance and guidance to negotiate safely."

So, you know, don't try this at home, without help from your doctor.

And finally:

"...treatment with GcMAF does appear to be very promising and relatively safe for patients with disabling CFS and more than 100 CFS cases have been treated successfully in Europe by two separate groups in Belgium and The Netherlands. The non-response rate appears low and currently sits at about 5% and perhaps related to rare Vitamin D receptor polymorphisms..."

which I am being tested for, still awaiting the results.

(emphasis mine)

So based on GcMAF being a naturally occurring substance in the human body, and the fact that it's been studied since 2002, I am convinced it's safe enough to try. And I do have high hopes.

As for the whole stem cell thing, it looks like that's out. Dr. Neil Riordan, who runs the clinic in Panama I would have gone to, is now making something from stem cells, some kind of cream you can apply topically. It's called MTF. I had Dr. Cheney write down what that stands for but I can't really read it, but it looks like "Mesenchymal Trophic Factor".
It's something I'll be starting 18 weeks after I start GcMAF. He said he gave some to a relative with Parkinson's and that it really helped his tremors, and that he was able to cut the lawn on the riding mower for the first time in years or something. When we talked though it had only been a day or two and he didn't expect it to last, at least not without another application. I don't know how that turned out. I guess I can ask at my follow up visit in six months.

It's been a rough few months. And at the lowest times it's been the thought of the GcMAF that's kept me going. Did I mention my hopes are up?

11 comments:

  1. I'd be interested in hearing how this turns out for you! I'm having positive results so far from my own treatment. The more answers, the merrier! Hope you feel better soon.

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  2. Thanks Shelli : ) Hope I'll have something good to report soon.

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  3. Wishing you luck with this new treatment! I've been really curious about GcMAF, but haven't been able to do much research on it just yet. Your post was helpful. I'm curious to see how you do on it. Really hope it helps you!

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  4. Thanks Laurel! I hope it makes some kind of difference. I want to make myself some kind of baseline post so I can remember how I felt and how all my symptoms were before I started.

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  5. Thanks for all the information on GcMAF, Alison. Good luck and please keep us posted on your progress!

    Sue

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  6. My daughter has been on GcMAF for 19 weeks now with tremendous results. She is not 100% yet but even her cognitive deficits appear to be returning. Her physical energy in comparison to what it was is astounding.

    She is going to continue onto another cycle of gcMaf... another 18 weeks. Will keep you posted.

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  7. Looking into GcMAF for my husband who has ALS. Do you know of what doctors I might contact who may have tried it for ALS? Thanks for any thoughts on this.

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  8. I'm sorry I don't know anything about GcMAF for ALS. The only idea I have is you could contact BGLI www.gcmaf.nl they manufacture GcMAF and might have some leads.

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  9. Can we have a follow up on your relative with Parkinsons. I am interested to know if he took further GcMAF and what happened. Thanks

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  10. It wasn't my relative, it was my doctors, so I'm afraid I don't know anything. Also you misunderstood me, probably because of the weird line breaks. He didn't try GcMAF, he tried MTF, something derived from stem cells.

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    ReplyDelete