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7:00 pm Thursday May 29, 2008 - Doors open at 6pm
Free, open to the public, no registration required
Insights Into the Crisis, Key Players and the Future
Author Pamela Weintraub who is an editor at Discover Magazine, New York, in her first public discussion about her book, Cure Unknown:
Inside the Lyme Epidemic
Exclusive Pre Release of Book for Sale & Signing ($25)
Attorney Elliott Pollack who has defended some of the premier Lyme treating physicians against charges related to long term treatment
Dr. Joseph Burrascano, whose own private journey has led him through the clinical, political, legal, and research aspects of the disease
President Pat Smith (LDA) whose own personal experience with Lyme disease led her to over 22 years of advocacy efforts to find a cure
7:00pm Opening Remarks & Personal Insights
Pat Smith, President, Lyme Disease Association, Moderator
7:15pm Pamela Weintraub
Veteran science journalist Pam Weintraub discusses CURE UNKNOWN, the first major journalistic examination of the Lyme wars and a dramatic narrative history of the epidemic from its earliest days. In her first public talk about her book, Weintraub will describe her personal journey and her six-year-long aggressive investigation into the dark waters of Lyme. She'll report some surprising new findings from the forefront of academia while also deconstructing the flawed science, hubris and moneyed interests that have led to the tragic landscape of Lyme and other tick-borne disease today.
7:30pm Dr. Joseph Burrascano, Jr.
Dr. Burrascano tells about his initial involvement in Lyme disease, his 1992 testimony to Congress, followed almost immediately by the beginnings of a medical board inquiry, his insights on the Lyme crises, what he is doing today and how he sees the future.
7:45pm Attorney Elliott Pollack
Elliott Pollack adds his voice and his experience to the Lyme wars, and he provides knowledge from his cases as he defends doctors against medical board charges. He shares his perspective on how the political situation has escalated, hurting doctors and patients alike, and useful insights to help doctors who are treating.
8:00pm Interactive Panel Presentation
9:15pm Questions & Answers with Audience
Posted by bettyg (Member # 6147) on :
taking place TONIGHT!
Posted by CD57 (Member # 11749) on :
please post notes!
Posted by Larkspur (Member # 5131) on :
My parents went although I don't have "notes" yet to post....
They said it was great, but a realtively small turn out (about 60 people)
It was noted to be the first Lyme gathering of it's kind that discussed the political issues, not focused just on medical aspects
My parents bought 2 books (one for me, one for them) My mom talked with Pamela Weintraub for a while.
The book seems great and hopefully will go a long way in educating the public about what is really going on..
Posted by Charlienj (Member # 12017) on :
I was there. I thought it looked like a little higher of a turnout, maybe closer to 75 people.
Pat Smith opened the forum by giving a bit of her personal background with dealing with lyme, primarily her daughter's history. I wasn't familiar with any of this as this was my first conference/LDA event though I'm sure a number of others were.
Then, the three speakers each spoke for about 20 minutes or so (Pam and Dr. B a bit longer than Pollack). Dr. B and Pollack were very good presenters, which isn't surprising as I'd assume Dr. B's done public speaking for a number of years now and Pollack's an attorney. It seemed like Pam was a bit newer to public speaking.
After their individual presentations, the three, along with Pat, spoke on various items for a bit, and then the forum concluded with a session of answering questions submitted by the audience. Pollack left prior to this question and answer session (the forum started about a half hour late), and Pat responded to a number of the questions as well as Pam and Dr. B. I was impressed with Pat during this session as she had a very good public speaking presence, formulated her thoughts and selected her words very well, and came across knowledgable with good and direct responses.
I don't have much time right now, and my memory's a bit shot at the moment so I can't recall many specifics of the information presented. One thing I'll mention was Dr. B's speech, which detailed his initial involvement with lyme including testing methodology used by someone he worked with or knew through his work (McDonald?) which enabled McDonald to see the spirochetes in samples from patients under a microscope. He also spoke about his prior court case and not being able to present scientific articles and whatnot on his behalf due largely to some provisions for the NY medical board court system he was tried under. These are just a few of the items discussed.
As Larkspur said, it was more of a political/activist type forum than a scientific one, and this was pointed out by Pat that it was the first such conference primarily geared towards the political side that the LDA was hosting. I was familiar with a lot of the political/activist aspects already (HR 741, Blumenthal's decision, "Under Our Skin", etc.), but there of course were some items and issues that were new to me.
It was probably more beneficial though in that regard for my mom who came with me and lives in Pallone's district. My parents have their hands and time full with my sister but have both interacted extensively with local and state politicians in the past, and I've been trying to get them up to speed on a lot of lyme and related issues. My mom ended up talking to Pat for a bit afterwards, and both my parents plan on meeting with Pallone directly (who they've dealt with before) to discuss the lyme issues.
Pam's book was also available for sale, and I got a copy of it as I'm guessing most people there did.
Posted by seibertneurolyme (Member # 6416) on :
Thanks for the update.
Bea Seibert
Posted by Charlienj (Member # 12017) on :
One other thing of note. I'm nearly positive (as positive as my lyme brain will allow me to be) that Dr. B stated that the prevalence of Bartonella in ticks in NJ was greater than that of lyme. I don't know if there was a specific study he was basing this statement on or a number of studies and data.
I'm still reading up on and getting familiar with the science behind lyme and TBI, but I'd think this would be a pretty big concern for those of us in NJ, especially those who don't resolve with lyme treatment. I assume that the transmission of bartonella from tick to human is as likely (or not significantly less likely) than lyme upon a tick bite, but I don't know for sure. I'm also curious if the ticks carrying bartonella in NJ are just as likely to bite humans (if the prevalence of bartonella varies in different types of ticks than lyme) as ticks carrying lyme.
Assuming both of the above stipulations are true (or at least not significantly less likely) as well as what the statement from Dr. B. indicates, then it leads me to believe that bartonella is highly under-diagnosed in NJ, both in the general public and within those of us being treated for lyme and TBI. I don't know where to get data for reported bartonella cases in NJ offhand to get some gauge of this, but for one thing, I'd be surprised if the number of people in NJ treated for bartonella and not lyme comes anywhere near approaching the number being treated for lyme and not bartonella.
I'm just brain-storming off the top here so others are free to comment. I realize I may also be overlooking other variables in play. I suppose it's possible that an average immune system is able to better eradicate bartonella than lyme upon infection though I haven't seen anything to indicate this in my limited research regarding bartonella.
Just some food for thought.
Posted by Ann-OH (Member # 2020) on :
To the top! Excellent report. Ann - OH
Posted by Tincup (Member # 5829) on :
![[Big Grin]](biggrin.gif)