Sunday, May 20, 2012

Dr. Derek Enlander and MAF 878


Various clinician/researchers have been using GcMAF or probiotic MAF to treat ME/CFS and/or Lyme disease.  Early reports on the use of these substances have been inconsistent but generally positive.  Dr. Derek Enlander has stated that the injected GcMAF is the most promising treatment for ME/CFS in ten years.  Dr. Kenny de Meirleir delivers a comprehensive lecture on the mechanism and use of injected GcMAF here.

Two means of delivery of MAF have been used. The first, chemical GcMAF, has been administered in an injected form, either IM or sub-Q. It is a once a week injection for a certain duration. The dose is variable, and is worked out with the clinician on a case-by-case basis. Often ME/CFS patients take small dosages – as is true of many treatments for ME/CFS. Welcome to the world of ME/CFS.

The second version of MAF is presented in a probiotic form. There are several versions of this probiotic formulation: the original MAF 314, MAF 878 and MAF 1930.

Dr. Enlander, with pharmalogical help, has formulated a probiotic product, MAF 878, that most likely produces MAF – and a lot of it. This probiotic product is a tailored combination of various lactobacilli and other probiotics, in various carefully articulated combinations. The yogurt is taken at a variable dosage once a day. It does not need to be refrigerated. The target dosage is three ounces per day, generally taken with a protein, some roughage and olive oil.  Patients get MAF 878 at Dr. Enlander’s office and it is modestly priced.

The exact activity of the probiotic MAF product is unknown, but it is believed to activate or increase GcMAF. GcMAF attacks Nagalase, gobbling it up like Pac Man. GcMAF is a natural substance in the body but, in certain circumstances, it gets depleted. Elevated Nagalase, the bad boy, is seen as an indication for taking GcMAF. Some patients do a baseline Nagalase test and track the effect of the MAF.  Vitamin Diagnostics in NJ does a Nagalase test. The test takes three to four weeks to complete.

Patients who take this probiotics product MAF 878, or an allied product MAF 314 used by Dr. Paul Cheney, report various improvements in their symptoms. Dr. Cheney presented a short poster paper at the IAMECFS conference in Ottawa in September 2011. In a short, one-month study, a majority of patients showed improvement in at least two of seven major ME/CFS symptoms. In response to a question about MAF at this conference, Dr. Cheney said, “It works.” His more recent assessment of probiotic MAF has not been made public.

Dr. Klinghardt is using a homeopathic version of GcMAF, but there have been limited reports as to its use or benefit. Dr. Klinghardt, in a radio interview last fall, expressed great interest in chemical GcMAF.

MAF 878, as used by Dr. Enlander, has brought slow benefit to a majority of the 40 patients who take it. Some of these patients take MAF 878 by itself; others take it in combination with injected GcMAF.  As is his usual fashion, Dr. Enlander tracks his patients on this treatment. Preliminary results indicate that MAF 878 elevates NK cell function (LU30 test). Dr. Enlander has observed that MAF 878 seems to work especially well for IBS patients.

Injected GcMAF, and the several MAF probiotics substances, seem, over time, to bring substantial relief to some patients.  However, GcMAF products do not yield completely consistent results. The probiotic MAF 878 works slower in some cases and perhaps, in some patients, not at all. Keeping in mind the idea of “doing no harm”, one researcher reminds us that MAF 314 “is just a yogurt”. Conversely, MAF probiotic is seen by Dr. Cheney and others as being more powerful than injected GcMAF.

At the moment it is not clear how long these compounds need to be taken, if they need to be stopped when Nagalase is lowered into the normal range, whether there is a maintenance dose, or whether Nagalase, once lowered, stays lowered or how fast it rises again, if it does so. So we are in unknown territory with much of this therapy. A few clinicians are sharing information as it accumulates but, as with all ME/CFS treatments, not much is known and nothing reaches the level of real scientific data. Such is the world of ME/CFS. If an effective treatment ever does arrive for ME/CFS, most patients will never learn about it, and it will not reach the level of being scientifically supported.

Various clinician/researcher are doing small pilot studies with patients to determine dosage and efficacy of these GcMAF products. One would hope that someone would step forward and do a more extensive study of the mechanism of GcMAF and ME/CFS, but this is not likely to happen.

My own observational experience is that probiotic MAF “does something”. I know a number of patients who take one version or another of the probiotic MAF. All who take it experience a slow and general “strengthening”.  Some report improved sleep.

Nagalase levels over time seem to drop. In one case with which I am familiar, baseline Nagalase was 2.2, at three months it was 1.7, at six months it was 1.1. So this was a nice arc. 1, 25 dihydroxy vitamin D seems to normalize, often dropping from high to normal. Others report increased NK cell function or other immune system improvement. MAF seems to "do a number" on c4a.

It is the early going with this therapy. Time will allow us a clearer picture. I have been following chemical GcMAF for many years now. Later I followed MAF 314 closely. I do not see GcMAF, in either form, as a miracle cure. However it does “move the immune system” in a positive but unspecified manner that would catch the interest of a curious individual. It also very obviously brings benefit to a certain number of patients. Who benefits, and why, is still being investigated by several clinician/researchers.

It is a great mystery why no one is doing a serious study on these compounds. Perhaps someone will step forward to do this - so that we do not have to patch together fragments to try to get an idea of the risks and benefit.  However, this is the world of ME/CFS. Everyone is on their own - and we each have to find our own way.

In the meantime we have clinician/researchers like Dr. Derek Enlander and Dr. Kenny De Meirleir to thank for trying to bring some clarity to the treatment of this complex disease. 

12 comments:

  1. Thank you for this very useful article- it provides some much needed clarity to the often nebulously reported domain of GcMAF. I am eager to try one of these products when/if they become available for importing to Australia.

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  2. drug companies won't do a large scale study because they cannot patent the product.

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  3. My daughter, a patient of Dr. Enlander, has done well with the GcMaf shots ---well enough to plan to live away at school! She is current taking the probiotic 878 Maf and feels less well, but time will tell. Dr E is not testing Nagalase at this point because he feels the results are not consistent enough. I agree that GcMaf is pretty much ignored, perhaps because of the inability to patent the product, but it is a shame that this product has not been adequately tested.

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  4. http://www.nature.com/ni/journal/v13/n6/full/ni.2337.html?WT.ec_id=NI-201206

    Good microbes

    Laurie A. Dempsey, Nature Immunology,
    Increasing evidence supports the proposal of a role for commensal microorganisms in shaping systemic immune responses. In Nature Medicine, Artis and colleagues show that commensal bacteria can suppress the switching of B cells to immunoglobulin E (IgE). Germ-free mice and mice treated with broad-spectrum antibiotics have higher concentrations of circulating IgE. In turn, higher IgE concentrations correlate with more basophils and T helper type 2 cells and skewing toward type 2 immune responses in these mice. IgE induces upregulation of the receptor for IL-3 (CD123) in bone marrow precursor cells, which results in more basophil progenitor cells. Inhibition of IgE production or blockade of the receptor FceRIa diminishes the basophilia of the antibiotic-treated mice. Intriguingly, B cell–intrinsic expression of the adaptor MyD88 suppresses IgE production, basophilia and enhanced susceptibility to atopic disease. These findings may explain the greater incidence of atopic diseases as a result of more antibiotic use.
    Nat. Med. 18, 538–546 (2012)
    ______
    Slightly related. Wish someone would look into this.

    And then I wonder: I am much better only by strict diet, lots of saueerkraut, lots of broth, no starch, no fruit, chewing gum after meals/enzymes. Those who have IBS and get better from this comppund, do they already eat strictly? Do they not follow any diet? I would only be interested if it helps those who already eats a diet such as mine.

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  5. I just saw this come across my EMail from a Newsfeed and was wondering if it is successful. With Leaky Gut being identified with so many immune disorders, it made sense to me that is just might work. I look forward to more reports. TY so much for this blog. In healing, harmony and hope, Celeste, RN, patient, author, FM expert at Sharecare.

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  6. The original MAF 314 was ONLY proven to increase T4 cell count. Why, and I ask this respectfully, are you lumping it with GcMAF and other MAF compounds? I'd really like to know!

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  7. thank you, chris, for reporting on this!

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  8. I am curious to the comment that... "As is his usual fashion,Dr. Enlander tracks his patients on this." I have not found that to be the case. My daughter took two rounds of gcmaf through Dr. Enlander. There was no followup when she finished. No blood testing when she finished. Nothing to document if her bloodwork had improved from the first bloodwork.
    Very interesting.

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  9. That is not surprising to me.

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  10. MAF 1930??? I can't find any reference to that anywhere but here. Can you offer any more information on it please?

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  11. I got well with Dr. Enlander by his treating me and building me up to 100 ml of GCMAF injected weekly along with his heppapressin (sp) in small amounts daily. Was sick for three years and now am finally well.

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  12. Yes and I just saw a pig flying right outside my window.

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