Thursday, October 31, 2013

Mount Sinai ME/CFS conference - November 20, 2013

Dr. Derek Enlander is chairing an ME/CFS treatment conference at Mount Sinai in New York City on Wednesday, November 20, 2013. This one day conference will include presentations by Dr. Nancy Klimas, Dr. Dan Peterson, Dr. Judy Mikovits, Dr. Eric Schadt and Dr. Enlander himself. A panel discussion including the speakers as well as Dr. Frank Ruscetti and Christine Becker will occur at the end of the day. The emphasis will be on communication and interaction.

(The conference takes place in the Academy of Medicine, 1215 Fifth Avenue. Registration fee is $150 for physicians and $50 for patients. The conference runs from 11-4.)

It is my obervation that this conference is an outgrowth of a Simmaron research discussion held prior to the ME/CFS FDA meeting in May. At that time, Dr. Dan Peterson generously organized a pre-meeting open-format treatment discussion involving both Dr. Klimas and Dr. Enlander, along with a number of other clinicians, researchers and patients. The discussion was a lively one, and free-wheeling, just the kind of discussions necessary to push ideas along. Dr. Peterson's early morning meeting was the only item of real interest at this FDA conference and it is my feeling that this Mount Sinai conference is an attempt to build on that Simmaron discussion.

This is the second conference arranged by Dr. Enlander and the ME/CFS Center at Mount Sinai. Dr. Enlander is one of a very few physicians who is attached to a major university hospital doing research on this difficult illness. The last Mount Sinai ME/CFS Center conference was held two years ago and featured several very powerful and important lectures. Foremost was a talk by Dr. Eric Schadt that can be found here. Additonally Rich van Konenynberg gave a fine presentation on his mehtylation blockage/glutathione depletion ideas. Rich, who died a year later, is sorely missed by the patient community and many others who experienced the very rare character of this man. Rich's fully articulated three-hour lecture in Sweden can be found here. Dr. Kenny De Meirleir's often referenced talk on GcMAF can be found here. Dr. Enlander himself gave a fine presentation of his treatment strategy.

It is well known that Mount Sinai received a generous research gift from one of Dr. Enlander's patients, thus fueling the ongoing ME/CFS research at this center. It is less well known that these conferences at Mount Sinai, with all their very great importance, are constructed on a shoe string. It is time for someone else to step forward and help with this conference, especially considering the reality that very few of these kinds of discussions are ongoing in the field of ME/CFS treatment. This conference has very great potential to expand and ignite substantial treatment discussions - but someone is going to have to help Dr. Enlander in order for this conference format to reach its full potential.

For those readers who are not familiar with Dr. Enlander, here is a short radio interview with him.

Saturday, October 19, 2013

Dr. Joseph Brewer at ILADS 2013

Dr. Joseph Brewer gave a smashing talk on Mycotoxins and ME/CFS. Dr. Brewer is an Infectious Disease physician from Kansas City, MO, who has a longstanding interest in chronic illness. Dr. Brewer should be included in any serious discussion of these complex illnesses. He has great curiosity - which he backs up with science.

Dr. Brewer began by giving a general overview about mold, presenting a 2011 study of mold in water damaged buildings, a 2009 study of water damaged buildings after Katrina and a recent study out of Texas Tech.  He illustrated stachybotrus chartarum, one of the most notorious forms of mold.

He presented mycotoxins as extremely toxic, secondary metabolites. The three big ones, measured at Real Time Lab, are Aflatoxin, Ochratoxin A and Trichohothecene. 

Dr. Brewer and Dr. Hooper published a very important paper in April, 2013 on “Mycotoxins and ME/CFS”. Amazingly, they found 93% of 104 patients tested positive for one or more mycotoxins, compared to 0% in 52 controls.  Some have all three - the mycotoxins trifecta.

The clinical associations with mycotoxins poisoning are dysregulation of the immune system and especially dysregulation of mitochondria.  Mycotoxins are potent mitochondrial poisons. Mycotoxins produced the same symptoms as ME/CFS - and also as Lyme.

It is Dr. Brewer’s supposition that mold takes up residence in the body, particularly in the sinuses. He cited scientific studies that led him to this conclusion. This exposure can be current - or it can be longstanding from living or working in a moldy environment, ten, twenty or twenty-five years ago.

Dr. Brewer presented his treatment strategy for getting at the mold and getting rid of it. The first step is to reduce input. The second step is to enhance output. This can be through improving glutathione, increasing sweating, using binders like Cholestyramine or activated charcoal (his particular favorite) - and developing an antifungal strategy. 

The main approach that he uses is a mist delivery of Ampho B.  The instrument of delivery is a Nasa Touch

I asked Dr. Brewer about nasal colloidal silver. He said that he thought that colloidal silver was a promising treatment.

It was wonderful to see Dr. Brewer drop the mold bomb on this Lyme conference. He walks into a room and, when he is finished his delivery, things have changed. Dr. Brewer needs to be heard in more places. Meanwhile he goes about his work of helping patients. This clinician/researcher is among the very best. 

Friday, October 18, 2013

Dr. Judy Mikovits reports from ILADS/San Diego

The following report was written by Dr. Judy Mikovits:

While there were several provocative presentations today at ILADS including one on IVIG, Hyperbaric oxygen therapy and endocrine disorders, today I will focus this summary on talks given yesterday and today by Dr. Richard Horowitz. Dr. Horowitz piqued my interest when he started the discussion talking about the political stigma of the name, Chronic Lyme disease! Who suffers more by political stigma than sufferers of the disease with the name Chronic Fatigue Syndrome, I thought immediately? Dr. Horowitz and I are speaking the same language, one first expressed in 2011 in Ireland by MP Basil McCrae after I described the inflammatory cytokines, immune abnormalities and co-infections in ME/CFS and Autism. Basil saw the overlap in the diseases that I described but immediately thought of the political clout of working together. Millions of voters spoke volumes turning political stigma into a powerful lobby, he suggested. Today Dr. Richard Horowitz echoed MP McCrae’s wisdom and presented several hours worth of data supporting his suggestion that diseases including CLD, CFS, FM, MS, AD, autism some cancers and PANS/Pandas be called MSIDS: Multi-system Inflammatory Diseases. All of the diseases above share a single common denominator of activation of inflammatory cytokines and chemokines, which we were the first to publish as a signature of a specific subgroup of ME/CFS in 2011. Horowitz spent the next three hours discussing the sixteen points that drive this complex scenario including infections (bacterial, viral parasitic, candida), immune dysfunction, inflammation, toxicity, allergic sensitivities, nutritional and enzyme deficiencies, mitochondrial dysfunction, neurological dysfunction, endocrine disorders and autonomic nervous system dysfunction. We need the medical research community to overlap enough to see the similarities - and the example he gave here were the advances made in autism. He suggested, as our recent research with Drs. Gordon, Bhakta, and Snyderman demonstrates, that we could in fact identify the predominant co-infections based on distinct cytokine signatures. Moreover if we can identify the biochemical mechanisms driving the underlying immune dysfunction and inflammation whether you call it CLD, CFS, FM MCS or MS, you can treat based on the underlying mechanisms, You treat the inflammation, immune, mitochondrial dysfunction and nutritional deficiencies AT THE SAME TIME. Fix those items and perhaps the patient does not need long-term antivirals or antibiotic regimens. This is exactly the model that Dr. Sarah Myhill and I discussed in detail a few weeks ago. In fact, Dr. Horowitz mentioned Dr. Myhill’s treatment strategy particularly. He mentioned specifically Dr. Myhill’s use of oral phosphatidyl choline and Low Dose Naltrexone in combination with antioxidant herbal therapies such as Alpha lipoic acid, resveratrol, glutathione and micronutrients - all found in the comprehensive supplements in the Pharmanex Lifepak family. There were many specifics and details in this presentation, which I will integrate into my discussion with Dr. Myhill’s summary of our discussion in the next few days. Everything I learned today, I can integrate into personalized treatment strategies, which I will share with readers and their physicians

Thursday, October 17, 2013

ILADS/San Diego

I am heading to San Diego for the ILADS conference on October 18-20. ILADS is a four-day conference on Lyme disease, its diagnosis and treatment. ILADS has their own dogma, attached to the long term use of antibiotics in treating Lyme and its coinfections. This is a long and large conference - and it has the feeling of representing "an Industry". It is always well attended by practitioners or researchers who have a big stake in the Industry (Professionals). In this way it is very similar to the IACFS/ME conference that is held every two years. Both conferences take a very broad approach in attempt to represent various constituencies.  The results are mixed - as this approach to conferences always lacks focus.

Patient-driven conferences like Invest in ME or the Physician’s Roundtable are completely different. There is no Industry to be supported. The Mount Sinai ME/CFS conference in November 2011 also took a more focused approach both in terms of subject and duration. There will be another Mount Sinai ME/CFS conference on November 20 chaired by Dr. Derek Enlander and including Dr. Nancy Klimas, Dr. Dan Peterson, Dr. Judy Mikovits, Dr. Eric Schadt and Enlander himself.

At this ILADS conference I will try to ferret out what I can, what is useful to me.

I am very interested to hear Dr. Richard Horowitz lead a section on treating multiple infectious diseases. This will be an extended preview of his book “Why Can’t I get Better? – Solving the mystery of Lyme and Chronic Disease”, which will be available on November 17.

Dr. Horowitz takes a broad view, embracing the complexities of these difficult illnesses with an umbrella framework that includes both viral and bacterial infections. He tries to think outside of the box and has shown a great curiosity over many years now. A recent lecture can be found here sponsored by Xymogen. In spite of the commercial aspect of this presentation, it advances his basic notions.

Dr. Burrascano will give an update on the Advanced Labs culture test. This is an important test and the CDC seems to want it to not exist.

Dr. Joseph Brewer will present a lecture on mycotoxins involvement in ME/CFS and his ongoing ideas of how to treat this. To me this is an important subject and I look forward to hearing Dr. Brewer.

Eva Sapi will provide an update on her Biofilm research.

Dr. Andy Kogelnik of the Open Medicine Institute will give a talk entitled, ”Clinical Research Networks: A Paradigm for Understanding Chronic Illness”. Dr. Kogelnik and the OPI/MERIT initiative have big plans. 

Various researchers will present immunologic side of Lyme disease – testing and treatment.  (I wonder if they know of the research of Dr. Sonya Marshall-Gradisnik?)

There always seems to be such a great disconnect between the Lyme community and the ME/CFS world. For me this is very hard to understand, as they seem to overlap so much. In a remarkable post, Cort Johnson brings us information that Simarron is looking for tick-born illnesses in Dr. Peterson’s samples. I wonder why it has taken so long.  I have never heard Dr. Peterson mention anything of tick born illness. Maybe Lipkin is finding something in this regard?

I have always been surprised at not ever seeing Dr. Horowtiz at a ME/CFS conference. He should be center stage. I did see Dr. Burrascano at a WPI conference in Reno in the summer of 2010, brought there by the phenomenon of XMRV. Since then a few ME/CFS physicians make an appearance at the ILADS conference, fueled by the larger viral and immunological research of Dr. Judy Mikovits. Presenters at ILADS have included Dr. Joseph Brewer, Dr. Jose Montoya, Dr. Neil Nathan and Dr. Kenny De Meirleir. (A De Meirleir lecture on GcMAF, similar to the one presented at ILADS last year, can be found here. GcMAF in Lyme disease has not been seen since Dr. Klinghardt proclaimed it a wonder drug several years ago. )

It has always been a mystery to me that at ME/CFS conferences, no mention is made of Lyme. This even holds true for the Invest in ME conference. Maybe it is time for getting Lyme doctors to ME/CFS conferences. Maybe Dr. Horowitz should make a presentation at the Mount Sinai Conference?

Among the many attendees at ILADS will be Dr. Judy Mikovits, Dr. Chitra Bhakta, Dr. Eric Gordon, and Dr. Karen Vrchota.