The national annual Lyme and Tick Borne Disease Conference sponsored by Columbia University and the Lyme Disease Association will be held in Boston on Friday, October 26, 2007.
Treatment debate to be featured. Scientists from throughout the United States, as well as from Finland and Austria, will speak. Topics include:
* Genomics (Claire Fraser, U of Maryland), * Tick Diversity (James Oliver, Georgia Southern University), * Intracellular Sequestration (Jillian Livengood, CDC), * Bb Viability after Antibiotics (Hetta Yrjanainen, U of Turku), * Diagnostics Using Focus Floating Microscopy (Klaus Eisendle, Innsbruck Medical University), * sensitivity and Specificity of Blood Tests in Chronic Lyme Disease (Brian Fallon, Columbia University), * Immunologic Findings in Chronic Lyme Disease (Armin Aladeini, Cornell University), * An Update on current Lyme Research (Steven Schutzer, UMDNJ), * A New Conceptualization of Brain Imaging Findings in Fibromyalgia (Daniel Clauw, Univ of Michigan), * Abnormal Brain Circuitry in Chronic Lyme Disease and Relationship to C6 Intrathecal Index (James Moeller, Columbia University), * A case of Anaplasmosis after kidney transplant (Maha Assi, Mayo Clinic), * An Update on Another Tick Borne Disease -Tularemia (Katherine Feldman, U of Maryland), and * An Update on How Antibiotics Work in Lyme Disease (Benjamin Luft, SUNY at Stony Brook).
The conference will close in a point-counterpoint style that addresses the controversies in the treatment of chronic Lyme disease, including presentations by Ray Stricker (ILADS) and Paul Auwaerter (IDSA, Johns Hopkins).
To register and for more information, go to lymediseaseassociation.org/Conference2007.html
The Columbia University Lyme and Tick Borne Diseases Research Center (LTBDRC) opened on April 30 2007 at the Medical Center, culminating years of fund-raising effort by Time for Lyme, Inc, the Lyme Disease Association, and many private donors.
This is the first University based research center to address the debilitating symptoms that plague patients with chronic Lyme Disease, with the goals of focusing on the identification of better diagnostic tests, biomarkers of treatment response, and more effective and sustained treatments.
While this Center is not a clinical facility that provides treatment to patients, it is a research facility that will conduct both diagnostic and treatment studies into which patients can enroll. A symposium to celebrate the opening was held on April 30 to a packed standing-room only crowd.
The symposium included introductory comments by Dr. Jeffrey Lieberman (chair of Psychiatry), Dr. Lee Goldman (Executive Vice President for Biomedical Sciences and Dean of the Faculty of Health Sciences and Medicine at Columbia), Diane Blanchard and Debbie Siciliano (co-presidents of Time for Lyme, Inc), Patricia Smith (president of Lyme Disease Association), and actress Mary McDonnell (president of the Universe, Battlestar Gallatica).
Scientific presentations were given by Dr. Brian Fallon (Director, LTBDRC), Dr. Ben Beard (Director, Vector Borne Diseases at CDC), Dr. Ian Lipkin (Director, Greene Infectious Disease Laboratory), Dr. Rafal Tokarz (Lyme Resaerch Fellow, Microbiologist), and Dr. James Moeller (Mathematician and Imaging Analyst).
I know that Dr. Fallon had recently published the results of his study on repeated IV ceftriaxone in Chronic Lyme.
That's all I've got. Maybe someone else can give you more. Maybe no one really knows anything & that's why they are not responding. I'm sure it is not that no one cares.
Participants: People with chronic Lyme Disease ages 18-60
Goals: 1) To examine differences between SPECT images of Lyme disease vs psychiatric disorders 2) To determine how consistently brain imaging experts can distinguish the SPECT scans of patients with Lyme Disease from the SPECT scans of patients with depression and patients with anxiety disorders.
Status of study: Currently recruiting
Principal Investigator: Brian A. Fallon, MD
Design: This study is supported by funds from the Lyme Disease Association and from the Wilton Lyme Disease Task Force.
Patients with a history of erythema migrans positive or seropositive Lyme Disease and typical manifestations of Lyme Disease who have persistent cognitive problems despite prior treatment will be recruited.
The brain SPECT scans of the Lyme patients will be compared to age- and sex-matched controls.
Controls will consist of patients with depression and patients with an anxiety disorder.
Frequently asked questions:
Why is this study needed?
One of the more difficult diagnostic areas is to determine whether a patient is suffering from a primary psychiatric disorder or a secondary neuropsychiatric disorder as a result of a primary neurologic condition.
Because patients with central nervous system involvement of Lyme Disease may develop irritability, mood swings, sleep disorder, cognitive problems, marked fatigue, low sexual interest, pain, and anhedonia, these patients may easily be misdiagnosed as having primary depression.
As one tool to assist in the differential diagnosis, a SPECT scan is often ordered.
The assumption is that if the brain SPECT reveals a pattern of global decreased perfusion in a heterogeneous pattern then the patient is more likely to have had CNS involvement as a result of Lyme disease.
The pattern in depression would be more likely one of decreased perfusion only in the frontal lobes. The pattern in OCD would be increased perfusion in the orbitofrontal cortex or basal ganglia.
The questions we wish to ask are: a) are these assumptions accurate using the technology of HMPAO SPECT?; b) are the nuclear medicine physicians capable of differentiating (blind to diagnosis) whether a scan comes from a patient with Lyme Disease or from a patient with a primary psychiatric disorder alone?
Screening Questionnaire to Fax to Us: Not active yet
Posted by danielb (Member # 8522) on :
echo?
quote:Originally posted by danielb: echo?
Posted by danielb (Member # 8522) on :
thought so...
Posted by danielb (Member # 8522) on :
i'm skeptical regarding how seriously we are ever going to be taken.
Posted by djf2005 (Member # 11449) on :
i agree.
if this is the best the nations top research center can do, and as far as dr fallon is willing to stick his neck out, it will be many years before we are truly taken seriously.
thank for for LLMDs.
cheers
derek
Posted by adamm (Member # 11910) on :
I don't think that doc is really helping us
that much at all. There was actually,
in
the same new york issue in which the IDSA butchers
were named top docs, an article about "hypochondriacs" detailing
his treatment of a patient with
classic Lyme symptoms (including brain lesions ) as one.
This cannot be a coincidence.
[ 24. July 2008, 03:20 PM: Message edited by: adamm ]
Posted by lymewreck36 (Member # 4395) on :
Yes, Dr. F. is NOT willing to stick his neck out that much. I saw his interviews on T.V. after he completed his last research project. ISDA must love this guy.
mary
Posted by northstar (Member # 7911) on :
Adamm, Do you have anyway to access that article?
I would really love to read it.
I think Fallon's work is going to come back and bite us in the bu-t........
i.e., "All lyme patients have mental and cognitive problems"
I do not believe this but the media will pick up on this, as will insurance companies and the general medical community. It only reinforces an already pre-conceived notion/bias.
Northstar
Posted by Hoosiers51 (Member # 15759) on :
I think if Dr. Fallon's information is well-documented, his methodolgy is sound from a scientific standpoint, etc. that it will be hard for others to question it, even if "all" Lyme patients have brain problems.
I think that is why a lot of MDs DON'T believe us, because some of this stuff is only hear-say to them.
But Dr. Fallon's work WILL be seen by others. (i think and hope). Colombia is a well-respected institution, right?
As far as Dr. Fallon not "sticking his neck out".....I think he is trying to maintain his credibility, and I respect him for that. He might as well let his studies speak for themselves, and remain objective in the meantime. Remaining objective while he is doing his studies will make the results seem more legit.
I just hope something comes of all of this.......I had my brain scanned at Colombia back in 2005, when they were researching Lyme (but I guess hadn't opened this whole she-bang in 2007 yet). I did have lesions.
I met Dr. Fallon also at that time, but it was just to consult with him about my psychological problems, which were severe at the time. I was getting my blood drawn for Lyme tests the next day, but he told me (believing I had Lyme) that Lyme can cause the problems I had and Lyme patients have abnormal blood flow in the brain.
Just keep in mind that University hospitals doing research have to at least appear to be open-minded and not jump to conclusions. It is their job, it is the reason why they are credible.
I think the Lyme community is very lucky to have Dr. F and Colombia as a source of real, objective research when so many organizations in this country put a "slant" on their information.
Just remember that Colombia isn't a support group and Dr. F isn't an "activist," they do research, and thank God they are being FAIR to our side (and thanks to what the results are showing, they are actually TAKING our side).
Posted by blackcat (Member # 9881) on :
i have had personal experience with this guy. he is compassionate but the terminology he uses makes me think he has gone half way to the other side.
i think he is trying to have it both ways, please the idsa and not alienate ilads. i just dont think this can be done. he is trying to live in both worlds.
i am disappointed because he is a nice guy.
Posted by Mathias (Member # 5298) on :
I've been to Columbia and I agree with the jist of what was stated by a previous poster.
Columbia tries to toe the line and not be on either side. Ultimately, they will let their research speak for itself.
![[group hug]](graemlins/grouphug.gif)
![[confused]](graemlins/confused.gif)
![[Eek!]](eek.gif)
) as one.