Thursday, November 29, 2012

A few notes on ILADS 2012 Boston

I attended the ILADS conference in Boston at the Westin Waterfront. For the three days I was in Boston, I got up early at my friend's house and biked the five miles to the hotel on one of those fabulous city bikes. The hotel is situated in a newer waterfront development area that was very reminiscent of similar areas in Amsterdam or Hamburg. Riding through downtown Boston got a little dodgy at times, especially after darkness descended and the cold set in, at times with heavy rain.

This was the first time that I had attended an entire ILADS conference. I assigned myself the usual task - to seek out additional insights in trying to help my daughter. She has a complex neuro-immune illness that includes, in some proportion, Lyme disease. She was treated with antibiotics for six months in 2005 to no effect - except that it tore up her gut. (So much for antibiotics.) Repairing the damage has taken a few years. Most recently, in 2011, she tested positive for borrelia with the new culture test from Advanced Laboratory. Dr. Burrascano gave his pitch for this test at this conference - and he certainly has me convinced. Surprisingly there was not a lot of conversation about the game-changing nature of this test - although the lab itself did indicate that they were continuing to work towards some sort of validation, and they did say that a few insurance plans are now covering it.

These complex illness situations are difficult to figure out but, in my daughter's instance, this positive culture test underscored the idea that lyme is part of the complexity of her illness - substantiating previous indications on tests from Igenex and Neurosciences. I have encouraged others to take this test, but with little result, as most do not want to spend the $600. My daughter's resolve is to not take antibiotics again - at least not at the present time. It seems that ILADS doctors are big on antibiotics, although some do use other medicinals and treatments. In this sense ILADS has its territory staked out and one gets the sense that the ILADS world is an industry unto itself. For instance Cowden or Buehner or Klinghardt don't bother to attend. One wonders if they would be welcome, although the first two were represented by displays promoting their treatments and products.

This was an exceedingly well-run conference. It was a long three days of listening and watching. The conference starts early and runs into the evening, with a wide variety of presentations. The conference organizers are obviously trying to touch a lot of bases at the same time. There is a good balance between serious lectures, workshops, breaks for networking, and mid-day meals for eating and talking. The meals and tea breaks allow for intermingling of people - which is sometimes difficult for an outsider. The food was excellent - and healthy too. The conference was very close to full capacity. Clinicians, researchers, advocates and patients come from all over the world.

Many of the "big guns" of lyme treatment and research attended this conference, Horowitz, Cameron, Burrascano, Shor, McDonald, Savely, Sapi, Stephen Bock, Kenneth Bock, Schwartzbach, Nathan, Donta, Jemsek.

There was a great deal happening at the conference so I will only mention a few things that stood out for me.

One of my favorite Lyme clinicians is Dr. Richard Horowitz. He seems a little more aggressive than most. He believes that lyme and its coinfection illnesses are part of a larger complex, what he calls MCIDS -multiple chronic infectious disease syndrome. Here is a video of him talking about MCIDS. His lecture starts at 23:50.

I have never been able to understand the split between Lyme and ME/CFS. To me they seem like the same disease - each a form of acquired immune deficiency. But these two illness worlds do not seem to overlap in the real world. There is very little crossover. With this in mind....I was surprised to see Dr. Kenny De Meirleir at this conference. He gave a lecture on injectable GcMAF. This was a shortened version of his lecture at Mt. Sinai, which can be seen here. Dr. De Meirleir's lecture provoked some serious interest among a number of people, but it was surprising to me that there was not a larger audience for this talk. GcMAF or MAF 314 did not seem to be on the radar of the members of this conference. My own repeated references to the efficacy and benefit of MAF 314 brought almost no response.

Dr. Kenneth Bock gave a fine talk on Transfer Factors. This, of course, is old and almost forgotten information. It was good to see it advanced again.

Rich van Konynenburg was scheduled to make a presentation of his concept of methylation blockage and glutathione depletion. Unfortunately Rich died suddenly in late September. This was a great loss for the community of neuro-immune illness. Dr. Neil Nathan gave an abridged version of Rich's concepts, pointed people in the right direction to find his work  and spoke with deep feeling of this loss. Rich's lecture at Mt. Sinai in the fall of 2011 can be found here.

It was a great pleasure to meet Diana van Konynenburg at a get-together of the Ratna Ling group, a reception in remembrance of Rich van Konynenburg. Rich was a member of this group since its inception. Ratna Ling was a privately sponsored group of clinicians and researchers who met a few times a year to discuss aspects of neuro-immune illness. It was a powerful idea while it existed. I think the last year of sponsorship of this group was 2008. This reception allowed for a great amount of interaction among conference participants.

Another former Ratna Ling member in attendance was Dr. Judy Mikovits. It was great to see Dr. Mikovits and to realize, despite the turmoil in her life, she is back in business, attending conferences and giving presentations. Right after the ILADS conference, she spoke at the ME/CFS conference in Northern Ireland on November 12, 2012 - and she will be at the Physicians Roundtable in January. Dr. Mikovits seemed very focussed and was actively participating with many people.

For me the most powerful moment was three consecutive lectures on the last morning by Dr. Armin Schwarzbach, Dr. Alan McDonald and Dr. Eva Sapi. All three of these lectures had a sharpness to them - combining significant ideas and insights built on past research, while advancing the possibility of a positive leap into the future. These kinds of "visionary" lectures are not often seen amid the reams of statistics and clinical observations that are piled high in many other talks. The three of them in a row was impressive.

I was unfamiliar with Dr. Schwarzbach and I was very pleased to meet him and hear his presentation. Dr. Schwarzbach runs a research and treatment clinic in Augsburg, Germany. The clinic website is here. Dr Schwarbach's talk was entitled "Chlamydia Pneumoniae and Borrelia Burgdorferi as Intracellular and Cystic Bacteria: A Study of Symptoms, Laboratory Problems and Therapeutical Consequences".

I confess that I was a little taken aback by the talk of Dr. McDonald and wish very much that I could hear it again. It immediately sent me to read more about him on the internet. Dr. McDonald received a spontaneous standing ovation, which is unusual at conferences. The only other one that I have seen was for Dr. Marcus Conant several years ago.

Dr. Evan Sapi did a fine job following Dr. McDonald - a tough assignment. She highlighted her groundbreaking, ongoing research into biofilms.

One other talk that was significant to me was by Dr. John Aucott, whose talk was entitled "Microbiologic and Immunologic Events in Early Lyme Disease".

ILADS will be streaming selected lectures in the US and Canada on December 1 and 2. The schedule can be viewed here. Consult the ILADS website for streaming days in Europe and Australia.  Most of the presentations that I found interesting are not included in these streaming events. These include De Meirleir, McDonald, Sapi, Burrascano on the culture test, Neil Nathan on methylation, Aucott and Schwarzbach.

For more complete coverage of Lyme conferences I refer you to Scott Forsgren's site, here. Scott always does first-rate coverage.

Thursday, November 22, 2012

"Microbial Ecosystem Therapeutics" - Dr. Emma Allen-Vercoe, microbiologist

Following up on my post of probiotics and other ones on gut ecology, here is a recent lecture by Dr. Emma Allen-Vercoe at the Universtiy of Guelph in Canada. It is entitled "A New Paradigm in Medicine: Microbial Ecosystem Therapeutics". Dr. Allen-Vercoe is a microbiologist and her biography can be found here.

This lecture is a good discussion of emerging research in gut ecology. Dr. Allen-Vercoe presents her own exciting research ideas including describing the "MET" project. She also speaks of regulatory problems in moving forward with this treatment. This part is worrisome.

The link was sent to me by an ME/CFS friend who prefers to remain anonymous. I thank him for this tip.

Sunday, November 18, 2012

Adult Stem Cell Video for Muscular Dystrophy

Several years ago there were reports of Dr. Paul Cheney taking ME/CFS patients to Costa Rica and Panama for autologous stem cell treatments. The stem cells were harvested from the patients' fat or bone marrow and reinjected back into the patient after being manipulated in some fashion. The reported results were uncertain, and very little has been heard since about stem cells for ME/CFS patients.

The adult stem cell treatments of patients of Dr. Cheney were done at Stem Cell Institute in Panama as well as an institute in Costa Rica (which was eventually closed). The Stem Cell Institute is the brainchild of Dr. Neil Riordan. The webage of the Institute is here. Neil Riordan's professional page is here.

The main treatment thrust of the Stem Cell Institute is in other areas than ME/CFS. The Institute focuses on spinal cord injuries, MS and Muscular Dystrophy. The above video follows the treatment of Ryan Benton, a patient with Muscular Dystrophy.

The video was made by Peter Cairns. Peter Cairns and I met Dr. Neil Riordan by chance at a dinner after an XMRV-related conference at the Whittemore Peterson Institute in the summer of 2010. Many researchers and clinicians were invited to this conference to share information on neuro-immune illnesses.

Saturday, November 10, 2012

"I never met a probiotic that I didn't like."

Three times this past summer I took the long and difficult drive from PA to MN and back. Along the way I listened to podcasts, piano music (Brahms, Scriabin and Hersch) or ballgames. A few weeks ago, by chance, I heard a program on NPR's Science Friday that was right up my alley. It is entitled "Microbes benefit more than the gut".

 It can be found here.

Dr. Susan Lynch, an associate professor of medicine at UC San Francisco, discussed her recently published study on microbial diversity in the sinuses. An abstract of the study is here. During this interview Dr. Lynch touched on several of my favorite subjects including gut ecology, fecal transplants and Corynebacterium tuberculostearicum. (This is a bit of a joke.)

Dr. Lynch brings up several connections between the terrain of the sinuses and that of the gut - and what might be happening when things get out of whack.

Probiotics is a "hot" field these days.  I have a Google alerts on probiotics. Each day I read what comes across the screen. A year's study of probiotics research yields some valuable information.

The biggest news in the gut biome field was published in June 2012.  A significant mapping study of the gut biomes of over 240 normal people was presented by the Human Microbiome Project. "By mapping the normal microbial make-up of healthy humans using genome sequencing techniques, the researchers of the HMP have created a reference database and the boundaries of normal microbial variations in humans". Information about this study can be found here and elsewhere.

Various companies are studying and working on probiotics and probiotic formulations. The following is a selection of some interesting items.

Here is an article of studies indicating that Oxalobacter formigenes eats oxalates - with the possibility of reducing the chance of developing kidney stones. O. formigenes is not yet commercially available.

Micropharma is a company doing serious probiotic work. Here is an article on a probiotic formula that improves blood lipids and cholesterol. One of their main products is Cardioviva.

Another probiotic company is Chr. Hanson. This company has developed lactobacillus rhamnosus GR-1 in conjunction with Dr. Gregor Reid. Dr. Reid used this probiotic in a pilot study in Tanzania. This study inspired Marco Ruggiero to pursue his research into MAF 314.

Chr. Hanson has also developed a bifidabacterium, BB-12. BB-12 and LGG recently surfaced in this study involving colds and college students. Chr. Hansen has a page devoted to the research into this well-studied probiotic.

Dr. Reid is one of the foremost researchers in probiotics. As a microbiologist at the Lawson Health Research Institute in London, Ontario,  Dr. Reid co-developed a combo probiotic of Lactobacillus rhamnosus GR-1 and lactobacillus reuteri RC-14. It is marketed by Chr. Hansen and Jarrow, sold under the name of Fem-dophilus. Here is Dr. Reid on youtube speaking about this combination of Lactobacillus Rhamnosus GR-1 and Lactobacillus Reuteri 14 on yeast. Here is Dr. Reid talking more fully on probiotic research.

More recently Dr. Reid has stated that "Beneficial bacteria are indeed capable of degrading pesticides and sequestering toxic chemicals".

In this article, Dr. Reid lists those probiotics that he believes have been well studied.

Dr. Reid will be part of a one-day conference at NYAS in June 2013.

Most doctors - even those dealing with ME and other neuro-immune illness - do not give enough attention to gut ecology - and do even less to try to improve it. It does not seem to occur to them that gut ecology has something to do with immunce status or even autoimmunity. These gut changes, undertaken by patients, take time and effort to yield results. According to Dr. Kenny De Meirleir, turnover of gut ecology takes months. A state-of-the art Metagenomics test is available at Redlabs BE for tracking progress. A paper is soon to be published in regards to this test.

Gut ecology lies close to the center of this illness - and the ecology of the gut can be improved. Research and experience have pointed me towards specific agents. These are some good ones:

VSL #3
Fem-dolpholis (lactobacillus rhamnosus GR-1, l. reuteri RC-14)
Culturelle (reuteri GG)
Custom Probiotics (various, including lactate -free)
Mutaflor (E.coli Nissle)

The FDA has recently blocked the sale of Mutaflor in  the US and Canada. The reason? - the FDA claims Mutaflor is a a biological drug requiring trials and approval. Welcome to the future.

Recently I have become aware of Arabinogalactan. Arabinogalactan and its capabilities can be read about here.  Among other things larch arabinogalactan increases NK cell function. Here is an abstract from 1999.

And then there is MAF 314. 
This probiotic yogurt formula produces a tremendous amount of MAF. MAF decreases nagalase in the body.  Nagalase is a bad-boy enzyme. Nagalase levels can be measured at Vitamin Diagnostics (Health Diagnostics). The exact effect of this MAF 314 is unknown, and it is apt to remain that way for awhile. Beyond producing MAF, MAF 314 acts as a super-probiotic, delivering over thirty "good bacterias" in each dose. MAF-like probiotic formulas can be produced in the home, using existing probiotics and colostrum.

It is of interest that Dr. Gregor Reid is experimenting with his own version of a MAF-like probiotic, one which Professor Ruggiero says is very close to his own MAF 314. Dr. Ruggiero is working steadily to make MAF 314 more readily available.

Of course none of this improvement in gut ecology can be disconnected from diet - from what the patient puts in her mouth. Diet can also be treated now. Consult Dr. Myhill, Dr Terry Wahls, or Dr. Natasha Campbell-McBride. The key activity is limiting or eliminating carbohydrates. Dr. Burrascano emphasizes the need to cut out carbohydrates. More clinicians need to approach treatment of neuro-immune illnesses with this global approach. (This is not exactly news to many patients. See this 1999 site. )

Research into gut ecology is steady and on-going. While patients suffering from this debilitating illness are waiting for research into the pathogens that might or might not be responsible, it might be worth taking note of the gut biome research and strive to do what one can now - even though the treatments are somewhat general at this point.

All of the above is presented for informational purposes only. It should not be construed as medical advice. Always consult a physician (if you have or can find one).

Wednesday, November 7, 2012

ME Newry, Northern Ireland conference November 11, 2012

This is a video of a presentation of Rich van Konynenburg at the Mt. Sinai conference in NYC on November 20, 2011. Rich presented his concept of methylation blockage and glutathione depletion in ME/CFS. This video of Rich van Konynenburg at Mt. Sinai is a compressed version of a three-hour lecture given in Sweden, which can be seen here.

Rich van Konynenburg died suddenly on September 25, 2012. This was a tremendous loss for all of us. He was a very compassionate human being, with a very special mind and heart.

Rich was scheduled to speak at the 2012 conferences of ILADS in Boston on November 3, 2012 . At the ILADS conference, Dr. Neil Nathan, a long-time friend and collaborator, stepped in and presented a lecture of Rich's ideas about methylation blockage and glutathione depletion in ME/CFS. Dr. Nathan's lecture was based on Rich's notes. Neil Nathan did a fine job at a difficult assignment. Rich was also lined up to speak at the ME conference in Newry on November 11, 2012. Dr. Enlander, a long-time admirer of Rich van Konynenburg and the Chair of the conference, has dedicated the Newry ME conference to the memory of Rich van Konynenburg.

Speakers at the Newry conference include Dr. Charles Shepherd, Dr. Judy Mikovits, Dr. William Weir, and Dr. Chris Roelant.

This video was made by Peter Cairns.