Dr. Burrascano in Ridgefield CT

Dr. Joseph Burrascano and Dr. Eva Sapi spoke in Ridgefield, CT on May 22, 2012. Here is a video of Dr. Burrascano speaking on diagnosis and treatment of Lyme disease. This talk is especially important as he speaks of lyme culture testing and the new culture test being done at Advanced Laboratories in Sharon Hill, PA. If we are lucky, the talk by Eva Sapi will also be put online. This free event was sponsored by the Ridgefield Lyme Disease Task Force.

I particularly identify with Dr. Burrascano's belief that this is a two-pronged fight. One to kill the pathogen, the second to promote the immune system. It is good to see Dr. Burrascano speak so strongly and clearly about supportive measures for lyme disease. These include gut ecology support, methylation support (RVK), mitochondrial support, and diet, among other things. (Personally I do not get the exercise thing.) Most doctors do not pay a whole lot of attention to these matters, preferring instead to just giving the striker drugs. Often the patients suffer very much from this and have to stop treatment. I prefer the clinical experience of Dr. Dale Guyer that tends towards preparing the patient for drug treatments in the very same way as articulated by Dr. Burrascano (if not even more pronounced and in depth). Dr. Guyer has the right ideas in approaching these illnesses.

Someone should tell Dr. Burrascano about MAF 314.

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. 

InvestinME Conference 2012

The 7th annual InvestinME Conference will take place on June 1st in London. I have been to four or five of these conferences, and I am hoping to be able to go this year.

This conference for ME/CFS patients, clinicians and researchers, organized by Pia and Richard Simpson and their colleagues, is the very best of conferences on ME/CFS. Others should take this conference as an example for organizing clinician and research presentations. Actually, last November, Dr. Derek Enlander did organize a conference at Mount Sinai ME/CFS Center that was roughly based on the InvestinME model. We can look forward to upcoming conferences at the Mount Sinai ME/CFS Center. 

The one-day format of the InvestinME conference is hard-hitting and intense. It is a long day, and it does not let up. There is a round table and dinner presentation the afternoon and evening before the conference that allows the presenting clinicians and researchers to have valuable and serious interaction. I myself have observed numerous intense conversations going on in the hotel and at the conference, often during breaks and at lunch. (They serve a nice and healthy lunch as part of the conference.) It is a great idea to get these clinician/researchers together, and to have an informal go at each other. This is where things happen. InvestinME has done us a great service in facilitating such conversations.

This year's conference is going to be another very exciting event. Each year, there is a finely designed balance between past avenues of treatment and research, and new guest speakers that reveal new or further research directions - often aimed at filling out the larger picture. Emerging research and treatment is always blended in an intelligent way that extends the focus of their past conferences. In other words the organizers of this conference have an idea of what they are doing, and consistently follow a thread of the most serious and important research. The sponsors are not interested in solutions one hundred years into the future. They want things to happen now. Given the number of options, the organizers always strike a good balance. Always underlying this conference is an emphasis on new and expanding interactions.

This year we will see the return of Professor Olav Mella and Dr. Oystein Fluge, who made a very important presentation on Rituximab at this conference last year. Certainly they will elaborate on continuing studies with Rituximab. Perhaps they will speak about the announcement from just a few days ago that they will be conducting an open trial of Etanercept (Enbrel) on seriously ill ME/CFS patients. Some readers might remember that Dr. Jonathan Kerr proposed Entanercept as a good drug study candidate for ME/CFS. In 2007 Dr. Kerr designed a small trial using this drug on ME/CFS patients. Dr. Kerr's research application for funding for this trial was denied. Imagine what might have happened if this small trial had been funded? Unfortunately, this was the beginning of the end for Dr. Kerr and he was driven off the stage of ME/CFS research. He was such a fine researcher, modest and exacting. It was one thing that he was looking into genetic associations with ME/CFS. It was quite another that he was proposing treatments. Dr. Kerr went "one bridge too far" and he was disappeared.These attacks on ME/CFS or immunological researchers certainly indicate something.

Most of us know the story of how Dr. Fluge and Dr. Mella stumbled on the possibility of using Rituximab on ME/CFS patients. It was serendipity. It is worth noting at this time an announcement some months back of a study funded by author Laura Hillenbrand. Ms. Hillenbrand is underwriting an effort to revisit older pharmaceutical drugs for use on ME/CFS. This is a welcome effort, as sometimes searches like this actually really pay off. A good place to start would be the list of drugs that Dr. Kerr suggested might be useful. These suggestions were based on his genetic research. Enbrel could be one of these helpful drugs - and it does not have the toxicity of Rituximab.

Two other Americans are returning from last year, Dr. Andreas Kogelnik and Dr. James Baraniuk. Dr, Kogelnik has a great deal of information to share with Dr. Fluge and Dr. Mella, as they are all working with Rituximab. I would not be surprised if Dr. Kogelnik also begins or has begun studying the use of Enbrel in ME/CFS. Dr. Baraniuk, from Georgetown University, does important work with the brain. Mike Turris' fine summary from last year's conference said this about Dr. Baraniuk: "He is conducting a CFS and GWI research study, doing lumbar punctures where they measure the spinal fluid pressure during the procedure and search for specific proteins that may help understand these two similar conditions. As a treatment, he is trying Carnosine as an antioxidant that could relieve symptoms."

Dr. Daniel Peterson makes another presentation this year - as he has done several times in the past. Often he will attend this conference even if he is not giving a lecture. He has things to say to others, and he is always looking for new connections. As evidence of these connections, we can look to his colleagues from Bond University in Australia, where Dr. Peterson has strong research links. One of them, Dr. Sonya Marshall-Gradisnik, will be giving a talk entitled, "Current Knowledge of Immunological Markers". This will no doubt include details of a recent NK cell research project. Dr. Peterson has long believed low NK cells are at the heart of this illness and are a potential biomarker.

Further information on the remaining researchers can be found here.

InvestinME releases a DVD of the conference and the price is quite modest. It arrives in a timely fashion and can be shipped worldwide.

What suggestions might I add myself to the organizers of this conference? I would say these two things: I would like to see Dr. Samuel Shor invited to speak. I would like to see more ongoing attention given to GcMAF.