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Lessons from ME/CFS: Finding Meaning in the Suffering
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GcMAF and Nagalase

Discussion in 'GcMAF' started by Nitpicker, Dec 19, 2010.

  1. I found this forum via a Google Alert for GcMAF which interests me. It's potent, hard to find, expensive to purchase, and of uncertain quality. Since serum Nagalase levels seem an often useful way to measure effectiveness of GcMAF, even in short intervals, I'm interested in access to such tests as well.

    Please assume that I know little for sure about either of these.

    I am eager to learn about sources, expense, quality, effectiveness, side effects, safety, and so forth about both GcMAF and tests for serum Nagalase level. Accessible papers in academic journals are especially interesting to me. I intend to accumulate what I understand at http://CureCancerNow.WetPaint.com as I learn of it.

    Please add what you know about any of this either here, where I'll be watching, or directly to me as DickKarpinski@gmail.com when you have the time and energy for such unfunded activity.

    I found GcMAF from a report by Bill Sardi referencing clinical trials for both cancer and HIV conducted on young otherwise healthy patients in Japan by Dr.Nobuto Yamamoto and reported in peer reviewed journals which are available for free online. I learned that not everyone responds to GcMAF in a report months ago at http://GcMAF.eu and thought of a complementary method.

    Dr. Zheng Cui at Wake Forest invented LIFT, Leukocyte InFusion Therapy which uses apheresis to extract white blood cells including neutrophils and macrophages from a healthy donor for infusion into a cancer patient. He found first a cancer resistant mouse and later people whose white blood cells attack and kill cancer cells in the summer. Vitamin D? Hmmm. GcMAF is made in humans from plentiful vitamin D binding protein, aka Gc.

    If you have a patient whose macrophages are not activated by GcMAF, then perhaps you could find a suitable donor whose macrophages are already activated, 10 to 15 percent of us in the summer, or perhaps use GcMAF to activate them any time of year and then use LIFT to supply them to the patient.

    Since most of main stream medicine is ignoring both GcMAF and LIFT, possibly because of the limited potential for vast profits, we may need unconventional means of gathering and validating the information. I believe that this can be done in the complete absence of multi-million dollar investments, if enough smart people contribute their own efforts to the cause of improving health care outcomes.

    Do you agree? Will you explain your position or give your advice?

    Would any of the doctors who are using these therapies write up their results or even consent to being interviewed about them for publication in this forum or elsewhere?

    What am I forgetting to consider about bringing the benefits of GcMAF to clinics around the world?

    Richard Karpinski, Nitpicker Extraordinaire
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Richard,

    Thanks for your interesting post. I can respond to some things--I'm sure others will have more to say.

    First, Redlabs in Brussels is offering a Nagalase test experimentally--it isn't on their test menu but you can write it in. I assume this is to accommodate Dr Kenny De Meirleir's use of GcMAF in patients. He seems, at the moment, to have the most experience with it.

    Redlabs also tests the Vitamin D receptor for polymorphisms as this seems to predict response to GcMAF. This test is 67 euros. The Nagalase test, at the moment, is free as it is experimental.

    We have discussed (on the GcMAF thread) the problem of those who don't have the best polymorphisms in the VDR and the idea you mentioned of using "apheresis to extract white blood cells including neutrophils and macrophages from a healthy donor for infusion," but we didn't have the reference to LIFT and Dr. Zheng Cui at Wake Forest--thank you! I believe that a patient of De Meirleir has sent this idea to him.

    As far as sources for GcMAF, yes there are different ones and I don't think anyone knows for sure which is best. Dr. Cheney is using the one from BGLI lab, while De Meirleir has another source. De Meirleir is charging (I think!) 37 euros per weekly injection. I think the product from BGLI is a bit more. Dr Cheney plans to run a patient trial on GcMAF some time next year. I don't think either of them have published anything so we are just getting anecdotal accounts from patients so far. Those with the best VDRs are reportedly improving markedly, but it seems to take longer than the cases in Yamamoto's studies.

    There haven't been enough patients taking GcMAF long enough to really know the response. I and a few others here are planning to see (or have seen) De Meirleir with the hopes of starting GcMAF. A few here have already started.

    As far as getting either Cheney or De Meirleir to address GcMAF in an interview--it would be great, but don't hold your breath! There are a few YouTubes where DeMeirleir gives some anecdotal reports but that's all we have so far.

    Hope this helps and thanks for your input.

    Sushi
  3. mojoey

    mojoey Senior Member

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    Hey Richard,

    Sergio actually posted what you said in another thread: http://forums.aboutmecfs.org/showthread.php?8868-Bypass-bad-VDR-for-GcMAF-effectiveness...

    You may want to add to that one or delete this one so we can keep everything in one place?

    Thanks for chiming in here! I think the LIFT bypass is very promising and I've tried to engage Panama's stem cell institute in the stem cell analogue to this, but they don't seem interested.
    joey
  4. serg1942

    serg1942 Senior Member

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    Hi Richard,

    We exchanged some ideas in the Spanish-CFS-forum I run. Glad to meet you here!

    I have a question: what are the real possibilities for the LIFT and GcMAF to work? What would be the mechanisms? I mean, you find a compatible blood donor, and then you are injected with macrophages…in what state? You say:

    If you have a patient whose macrophages are not activated by GcMAF, then perhaps you could find a suitable donor whose macrophages are already activated, 10 to 15 percent of us in the summer, or perhaps use GcMAF to activate them any time of year and then use LIFT to supply them to the patient.

    How would you activate the macrophages in the first step on the donor, and then pass them on to the recipient? I don’t get it…Do you mean macrophages are naturally activated during the summer, and therefore this should be done at this time? If so, what is the percentage of activation? As far as I remember GcMAF activates macrophages raising their activity a few thousand folds…

    Is there any study or paper where is explained the fact of the immune system being capable of activating immune system against cancer?

    Let’s consider the second option: You are injected with macrophages from a compatible donor, then you activate those macrophages with GcMAF…Is there any evidence that this could work? If so, it would be necessary to present this in a well-supported way to some doctor who might be interested in this, and who has the resources to make it possible.

    Ok, these are the questions that come to my mind that I think should be replied, if we want to work on this:

    1- What is the percentage of “high responders” to GcMAF?
    2- Among the above percentage, how many could be compatible with us? In other words, in order to find some donor for each non-responder to GcMAF, how many people would we need to have tested? And, test for what? Is the VDR genetic test reliable enough at the moment in regards to GcMAF response?
    3- What would be the needed infrastructure to carry out this process?
    4- What’s the cost of LIFT?
    5- What would be the cost of the whole procedure?

    Well, these are just a few questions. Surely many others would need to be considered.

    Of course my predisposition to help in here is 100%. I am awaiting for my VDR results, so have no idea what my response to GcMAF will be. If I am lucky and I turn to be a high responder, I would be willing to donate my macrophages to other non-responders patients. Otherwise, If I am non-responder, I would be happy to work as a guinea pig trying LIFT therapy + GcMAF. It makes sense.

    I think we’d need someone with good scientific background, well-known in CFS field, and willing to help patients, to help us in putting the pieces together, and to show the proposition to a doctor who is able to put this into practice (Well, we sure are thinking of someone, but it’d be better to propose this privately, having done a previous background work, so that the project seems reasonable and worth trying to this mediator).

    Best,
    Sergio
  5. CindyWillis

    CindyWillis

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  6. GcMAF is made from vitamin D binding protein. I don't know how the level of that in blood serum varies with the season or for that matter with the level of vitamin D. Those are independent facts which I do not know about. The binding protein has an O-linked triple sugar (in some but not all people). Removing exactly two sugars using different enzymes on the cell surface of B-cells and T-cells respectively is what converts VDBP into DBP-MAF aka GcMAF.

    High levels of Nagalase (or for HIV+ patients, the gp120 supposed HIV capsid protein) somehow prevents in vivo generation of GcMAF, but does not interfere with injected GcMAF created in vitro. The obvious mechanism for this suppression of creation of GcMAF would be that all three sugars are removed from VDBP by Nagalase. However, mass spectrometer examination of cancer patients' blood serum finds plenty of VDBP with all three sugars still attached.

    It is still possible that GcMAF itself is denatured by the Nagalase removing the third sugar. Possibly, the injection of a batch of GcMAF, if a tenth of a microgram can be considered a batch, is only slowly used up this way and still works. One would infer that the in vivo creation of GcMAF might be so slow that the Nagalase destruction of it keeps the level so low that the macrophages are not stimulated enough to matter.

    Besides cancer cells and some pathogens, Nagalase is also produced at high levels in pregnancy. When the mother's white blood cells can reach the fetus through the placenta, it is important to the health of the fetus that there be no activated macrophages noticing these "foreign" human cells and destroying them.

    This analysis makes me wonder when such white blood cells can enter the fetus' blood and whether there is a surplus of miscarriages when that occurs while the mother has cancer killing white blood cells in the summer (for the 10-15 percent of us for whom this happens). If so, could we see it in existing medical records?
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  8. CindyWillis

    CindyWillis

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