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.

5 comments:

  1. I pretty much agree with this statement: "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."

    I have been a long time (30 year) ME/CFS patient. Seven years ago a doctor diagnosed me with Lyme disease. It didn't make sense to me. But a year ago the Borrelia culture test came back positive. I have been doing IV antibiotics for 8 months now along with antiviruals, antifungals and GcMAF. I see some improvement in PENE, in lower inflammation, in cognition, in energy.

    There seems to be more and more overlap between treatments for ME/CFS and Lyme (aside from antibiotics) - particularly around diet and gut issues, recommended supplements, methylation, stress reduction – and I think multiple chronic infectious disease syndrome (MCIDS) is the paradigm of the future. I'm fortunate to have a doctor who doesn't put me in either the ME/CFS category or the Lyme category but who looks at and tries to treat the whole immune dysfunction.

    ReplyDelete
  2. Some studies indicate that Lyme Disease is not the same as M.E. such as http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0017287

    For a good discussion of this issue http://www.prohealth.com/library/showarticle.cfm?libid=8441

    ReplyDelete
  3. Is it true MAF314 is $5000 to obtain? or more accurately, to receive consultation by Dr.Ruggiero using a one year kit of gifted MAF314 culture?

    ReplyDelete
  4. Refering to your statement:

    "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."

    This is a dynamite presentation. Wish our government officials could listen to this part of the video. 6% of Chinese population and 10% of US population thought to have lyme/co-infections of lyme. a world epidemic.

    ReplyDelete