IDSA announces presenters for hearing
06/29/09 11:07 Filed in: Lyme Disease in the news
IDSA Announces presenters for its July 30, 2009 Hearing of the Lyme Disease Review Panel
Posted June 22, 2009 on the IDSA website
On July 30, 2009 (8:00 AM – 5:00 PM EASTERN), IDSA will hold an all-day hearing of its Lyme Disease Review Panel to hear testimony from patients, physicians and scientists on its 2006 Lyme Disease Guidelines. Individuals presenting and the order in which they will present follows:
* Tina Garcia, Lyme Education Awareness Program Arizona (L.E.A.P. Arizona, Inc.), Mesa, Arizona
* Lorraine Johnson, California Lyme Disease Association (CALDA), Ukiah, California
* Daniel Cameron, MD, International Lyme and Assoiciated Diseases Society (ILADS), California
* Phillip Baker, PhD, American Lyme Disease Foundation (ALDF), Bethesda, MD
* Ben Luft, MD, The State University of New York, Stony Brook, NY
* Allison Delong, ILADS, Providence, RI
* Barbara Johnson, PhD, Centers for Disease Control and Prevention, Fort Collins, CO
* David Volkman, MD, Nissequogue, NY
* Sam Donta, MD, Falmouth, MA
* Eugene Shapiro, MD, IDSA & Yale University School of Medicine, New Haven CT
* Brian Fallon, MD, Columbia University Medical Center, New York, NY
* Sunil Sood, MD, Schneider Children's Hospital at North Shore, Manhasset, NY
* Ken Liegner, MD, ILADS, Armonk, NY
* Allen Steere, MD, Massachusetts General Hospital & Harvard Medical School, Boston, MA
* Steven Phillips, MD, ILADS, Wilton, CT
* Art Weinstein, MD, Washington Hospital Center, Washington, DC
* Raphael Stricker, MD, ILADS, San Francisco, CA
* Gary Wormser, MD, IDSA & New York Medical College, Valhalla, NY
In-person attendance at the hearing is by invitation only. However, the Hearing will be broadcast live, in real-time via webcast from the IDSA Website (www.idsociety.org/lymedisease.htm) and will be archived on the web for viewing at your convenience. Information on how to attend via webcast will be posted on the IDSA website no later than one week prior to the hearing.
Posted June 22, 2009 on the IDSA website
On July 30, 2009 (8:00 AM – 5:00 PM EASTERN), IDSA will hold an all-day hearing of its Lyme Disease Review Panel to hear testimony from patients, physicians and scientists on its 2006 Lyme Disease Guidelines. Individuals presenting and the order in which they will present follows:
* Tina Garcia, Lyme Education Awareness Program Arizona (L.E.A.P. Arizona, Inc.), Mesa, Arizona
* Lorraine Johnson, California Lyme Disease Association (CALDA), Ukiah, California
* Daniel Cameron, MD, International Lyme and Assoiciated Diseases Society (ILADS), California
* Phillip Baker, PhD, American Lyme Disease Foundation (ALDF), Bethesda, MD
* Ben Luft, MD, The State University of New York, Stony Brook, NY
* Allison Delong, ILADS, Providence, RI
* Barbara Johnson, PhD, Centers for Disease Control and Prevention, Fort Collins, CO
* David Volkman, MD, Nissequogue, NY
* Sam Donta, MD, Falmouth, MA
* Eugene Shapiro, MD, IDSA & Yale University School of Medicine, New Haven CT
* Brian Fallon, MD, Columbia University Medical Center, New York, NY
* Sunil Sood, MD, Schneider Children's Hospital at North Shore, Manhasset, NY
* Ken Liegner, MD, ILADS, Armonk, NY
* Allen Steere, MD, Massachusetts General Hospital & Harvard Medical School, Boston, MA
* Steven Phillips, MD, ILADS, Wilton, CT
* Art Weinstein, MD, Washington Hospital Center, Washington, DC
* Raphael Stricker, MD, ILADS, San Francisco, CA
* Gary Wormser, MD, IDSA & New York Medical College, Valhalla, NY
In-person attendance at the hearing is by invitation only. However, the Hearing will be broadcast live, in real-time via webcast from the IDSA Website (www.idsociety.org/lymedisease.htm) and will be archived on the web for viewing at your convenience. Information on how to attend via webcast will be posted on the IDSA website no later than one week prior to the hearing.
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Lyme review panel members stir concern
01/29/09 18:39 Filed in: Lyme Disease in the news
At last, the IDSA (Infectious Diseases Society of America) has selected members to review the guidelines for the treatment of Lyme disease. Lyme awareness groups are alarmed at the placement of Carol J. Baker, MD, as the committee chairperson. Notably, there are also no ILADS (International Lyme and Associated Diseases Society) members on the review panel.
Lynn Shepler, MDJD, shares her concerns:
CAROL J. BAKER, MD, head of the new committee formed as a result of AG Richard Blumenthal's investigation, is Past-President of IDSA, and lists her chief interests as "VACCINOLOGY," "CLINICAL TRIALS," AND "VACCINE POLICY." She has published "more than 100 articles on vaccine research."
Dr. Baker is also a member of the Advisory Committee for Immunization Practices of the Centers for Disease Control and Prevention.
Was Dr. Baker a member of the Advisory Committee for Immunization Practices of the CDC at any point when past or future Lyme disease vaccines have been discussed --- formally, or informally?
The team she is part of at "The Center of Vaccine Awareness and Research" in Houston, Texas describes itself as "dedicated to improving the health of children from infancy through adulthood by promoting vaccinations and educating families and health care providers on all available vaccines."
Uh, does this include the Lyme vaccine(s)? Dr. Wormser's principal conflict of interest was that he was consulting to pharmaceutical companies on Lyme disease vaccines --- something he knew about and refused to disclose to IDSA administrators.
Dr. Wormser was head of each of the two IDSA guidelines on Lyme disease that have been issued. In my personal opinion, both versions of the IDSA guidelines have been biased in favor of vaccine commercialization.
By my reasoning, the need to deny the existence of persistent infection is part of the drive to commercialize Lyme disease vaccines that are not otherwise ready for market. Persistent infection is an important scientific problem that needs to be solved before any vaccine trials can be done. Instead, Wormser et al simply lie, and maintain the patients are sick with "something else."
So, instead of Dr. Wormser, we have a prominent vaccinologist, and former President of IDSA as the head of the committee? On the face of it, I find this very alarming!
(Please post this information to any Lyme disease discussion board to educate patients about the possible biases on the part of members of this new committee).
Following is a list of Lyme review panel members:
Carol J. Baker, MD,
Chair Baylor College of Medicine
Houston, TX
William A. Charini, MD
Peabody, MA
Paul H. Duray, MD (retired)
Westwood, MA
Paul M. Lantos, MD
Duke University Medical Center
Durham, NC
Gerald Medoff, MD
Washington University School of Medicine
St. Louis, MO
Manuel H. Moro, DVM, MPH, PhD
National Institutes of Health
Bethesda, MD
David M. Mushatt, MD, MPH & TM
Tulane University School of Medicine
New Orleans, LA
Jeffrey Parsonnet, MD
Dartmouth‐Hitchcock Medical Center
Lebanon, NH
Cmdr. John W. Sanders, MD
U.S. Naval Medical Research Center Detachment, Peru
Lynn Shepler, MDJD, shares her concerns:
CAROL J. BAKER, MD, head of the new committee formed as a result of AG Richard Blumenthal's investigation, is Past-President of IDSA, and lists her chief interests as "VACCINOLOGY," "CLINICAL TRIALS," AND "VACCINE POLICY." She has published "more than 100 articles on vaccine research."
Dr. Baker is also a member of the Advisory Committee for Immunization Practices of the Centers for Disease Control and Prevention.
Was Dr. Baker a member of the Advisory Committee for Immunization Practices of the CDC at any point when past or future Lyme disease vaccines have been discussed --- formally, or informally?
The team she is part of at "The Center of Vaccine Awareness and Research" in Houston, Texas describes itself as "dedicated to improving the health of children from infancy through adulthood by promoting vaccinations and educating families and health care providers on all available vaccines."
Uh, does this include the Lyme vaccine(s)? Dr. Wormser's principal conflict of interest was that he was consulting to pharmaceutical companies on Lyme disease vaccines --- something he knew about and refused to disclose to IDSA administrators.
Dr. Wormser was head of each of the two IDSA guidelines on Lyme disease that have been issued. In my personal opinion, both versions of the IDSA guidelines have been biased in favor of vaccine commercialization.
By my reasoning, the need to deny the existence of persistent infection is part of the drive to commercialize Lyme disease vaccines that are not otherwise ready for market. Persistent infection is an important scientific problem that needs to be solved before any vaccine trials can be done. Instead, Wormser et al simply lie, and maintain the patients are sick with "something else."
So, instead of Dr. Wormser, we have a prominent vaccinologist, and former President of IDSA as the head of the committee? On the face of it, I find this very alarming!
(Please post this information to any Lyme disease discussion board to educate patients about the possible biases on the part of members of this new committee).
Following is a list of Lyme review panel members:
Carol J. Baker, MD,
Chair Baylor College of Medicine
Houston, TX
William A. Charini, MD
Peabody, MA
Paul H. Duray, MD (retired)
Westwood, MA
Paul M. Lantos, MD
Duke University Medical Center
Durham, NC
Gerald Medoff, MD
Washington University School of Medicine
St. Louis, MO
Manuel H. Moro, DVM, MPH, PhD
National Institutes of Health
Bethesda, MD
David M. Mushatt, MD, MPH & TM
Tulane University School of Medicine
New Orleans, LA
Jeffrey Parsonnet, MD
Dartmouth‐Hitchcock Medical Center
Lebanon, NH
Cmdr. John W. Sanders, MD
U.S. Naval Medical Research Center Detachment, Peru
Chronic Lyme Disease
09/05/08 16:49 Filed in: chronic lyme disease
Chronic Lyme disease is controversial. It is what appears to affect those of us who still suffer from Lyme symptoms after finishing a standard IDSA recommended dosage of antibiotics. In some cases, chronic Lyme manifests in Lyme patients who received antibiotics for treatment, but weren't given a strong enough dose for a long enough time.
Some Lyme symptoms seem almost livable. Tinnitus, for example. Talking from personal experience only, I can live with it. This is not to say that I like it. On the contrary. I'm a classically trained musician, peculiarly sensitive to noise. You know those people who wince at the out-of-tune piano at the community concert? That would be me. I'm not exactly proud of that, just sayin'. So, losing my hearing partially to tinnitus has really sliced into my enjoyment of natural sounds. The tinnitus might go away some day. For now, it sure seems chronic. There are metallic crickets playing at varying volumes inside my head, 24/7.
Other chronic Lyme symptoms are far more serious. For example, medical evidence suggests that rheumatoid arthritis is one result of untreated, or undertreated Lyme disease. As many as 60% of people with untreated Lyme may develop chronic arthritis.
Central nervous problems, such as facial paralysis and meningitis are said to occur in 10 to 20% of people who are undertreated or never treated for Lyme.
Heart symptoms occur in a small percentage of Lyme patients. A jumpy, pounding irregular heart can vary the gamut from being not at all bothersome, to very scary. The jumpiness can occur either because of an infection in the heart, or an electrical conduction that requires the patient have a pacemaker implanted.
Chronic Lyme is controversial because doctors don't all agree that these long-term symptoms of Lyme are indeed still considered Lyme. Whatever you call them, they need to be tended to.
Some Lyme symptoms seem almost livable. Tinnitus, for example. Talking from personal experience only, I can live with it. This is not to say that I like it. On the contrary. I'm a classically trained musician, peculiarly sensitive to noise. You know those people who wince at the out-of-tune piano at the community concert? That would be me. I'm not exactly proud of that, just sayin'. So, losing my hearing partially to tinnitus has really sliced into my enjoyment of natural sounds. The tinnitus might go away some day. For now, it sure seems chronic. There are metallic crickets playing at varying volumes inside my head, 24/7.
Other chronic Lyme symptoms are far more serious. For example, medical evidence suggests that rheumatoid arthritis is one result of untreated, or undertreated Lyme disease. As many as 60% of people with untreated Lyme may develop chronic arthritis.
Central nervous problems, such as facial paralysis and meningitis are said to occur in 10 to 20% of people who are undertreated or never treated for Lyme.
Heart symptoms occur in a small percentage of Lyme patients. A jumpy, pounding irregular heart can vary the gamut from being not at all bothersome, to very scary. The jumpiness can occur either because of an infection in the heart, or an electrical conduction that requires the patient have a pacemaker implanted.
Chronic Lyme is controversial because doctors don't all agree that these long-term symptoms of Lyme are indeed still considered Lyme. Whatever you call them, they need to be tended to.
How to find a Lyme doctor
08/20/08 17:07 Filed in: lyme Disease Doctor
Currently, there are two standards of treatment for Lyme disease. If you have Lyme symptoms, or suspect you may have Lyme, please contact a Lyme literate medical doctor, or LLMD. Go to the Lyme Disease Association doctor referrals page.
You'll need to register using your email address, and follow the simple directions to find a doctor near you. It doesn't take long and it's easy to do. If you need a Lyme specialist, we urge you to find one soon.
Infectious disease doctors (IDSA) may not have knowledge of Lyme disease, and may lack the experience that ILADS specialists can offer in diagnosing and treating Lyme. ILADS member Ginger Savely, RN, has treated over a thousand patients suffering with Lyme symptoms. She says "you can get better!"
If Lyme is left untreated it can be debilitating. The good news is you can get better. Find a doctor who knows how to diagnose and treat Lyme now.
You'll need to register using your email address, and follow the simple directions to find a doctor near you. It doesn't take long and it's easy to do. If you need a Lyme specialist, we urge you to find one soon.
Infectious disease doctors (IDSA) may not have knowledge of Lyme disease, and may lack the experience that ILADS specialists can offer in diagnosing and treating Lyme. ILADS member Ginger Savely, RN, has treated over a thousand patients suffering with Lyme symptoms. She says "you can get better!"
If Lyme is left untreated it can be debilitating. The good news is you can get better. Find a doctor who knows how to diagnose and treat Lyme now.
ABC covers Lyme debate - part 2
08/04/08 16:33 Filed in: Lyme Disease in the news
LDRD vlog
Watch the video
* Lyme disease tests are often misleading
* Lyme symptoms can mimic hundreds of other conditions
* Many Lyme patients do not receive a correct diagnosis until the Lyme bacteria has had a chance to replicate throughout their body
Does your doctor know how to test for Lyme? Is he or she Lyme aware? ILADS physician Dr. Raphael Stricker told us in an exclusive LDRD interview that the conventional Lyme tests have a "coin-toss sensitivity," meaning that you could get the same results if you just flip a coin.
Do you have to go outside IDSA recommendations to get the answers you need? The woman in this news story considers herself virtually cured of Lyme, after two and a half years of antibiotics therapy.
Are some conventional doctors beginning to understand that these tests, developed over 30 years ago, are outdated and inadequate?
Watch this brief news story on the great Lyme debate. Journalist Kathy Fowler continues the 3-part investigation. Leave your comments here and also send drop her a note at lyme@wjla.com Please share this link with others you know are concerned about Lyme disease symptoms.
Watch the video
* Lyme disease tests are often misleading
* Lyme symptoms can mimic hundreds of other conditions
* Many Lyme patients do not receive a correct diagnosis until the Lyme bacteria has had a chance to replicate throughout their body
Does your doctor know how to test for Lyme? Is he or she Lyme aware? ILADS physician Dr. Raphael Stricker told us in an exclusive LDRD interview that the conventional Lyme tests have a "coin-toss sensitivity," meaning that you could get the same results if you just flip a coin.
Do you have to go outside IDSA recommendations to get the answers you need? The woman in this news story considers herself virtually cured of Lyme, after two and a half years of antibiotics therapy.
Are some conventional doctors beginning to understand that these tests, developed over 30 years ago, are outdated and inadequate?
Watch this brief news story on the great Lyme debate. Journalist Kathy Fowler continues the 3-part investigation. Leave your comments here and also send drop her a note at lyme@wjla.com Please share this link with others you know are concerned about Lyme disease symptoms.
ABC covers the Lyme Debate
08/02/08 11:51 Filed in: Lyme Disease in the news
* Is Lyme disease an unrecognized epidemic?
* If left untreated, will it become chronic?
* Can Lyme be treated with long-term antibiotics?
Or do you believe, as IDSA docs do, that the Lyme epidemic is nonexistent? Is chronic Lyme disease all in the patients' head? Are long-term antibiotics dangerous?
These questions simmer at the heart of the great Lyme debate, which is played out every day in decisions made by IDSA doctors on one hand, and ILADS physicians on the other. The IDSA is currently reviewing its treatment guidelines.
Who's correct? Where do you stand? Anyone who has ever been doubted by their Infectious Disease doctor, and all of us whose lives are affected by Lyme will want to watch this three part story.
ABC News covers the Lyme controversy. Take a look. If you appreciate this report, please take a moment to call or email ABC and let them know. Our opinions as viewers matter to them.
Lyme story airs!
07/04/08 13:30 Filed in: Lyme Disease in the news
According to Brooke Landau, Lyme activist and TV news reporter, television stations listen and respond when they are deluged with requests from viewers to air stories about a specific topic. Viewers are their bread and butter. Please take the time to comment on the ABC website to let them know you appreciate the story they aired this morning about the documentary film, Under Our Skin. Here's my comment to them:
Thank you, thank you for bringing this growing epidemic to light. However, as many have already noted, the majority of people suffering with Lyme disease never saw a tick bite, and never had the bull's eye rash. In addition, the tests for Lyme have what one physician refers to as "coin toss sensitivity," meaning that if you toss a coin, you get results that are just about as accurate as using the ELISA or the Western Blot for testing positive. According to ILADs physicians I have interviewed for the Lyme Disease Research Database, the CDC has a long history of ignoring scientific evidence for the existence of chronic Lyme disease. Thanks to CT Attorney General Richard Blumenthal, the IDSA is now being forced to review its Lyme disease treatment guidelines. People who are suffering with Lyme due to misdiagnosis, under-diagnosis, and simple ignorance have long been forced to become their own health advocates, often at a time in their lives when they are extremely sick. I applaud you for airing this segment on the Lyme controversy, yet I am disappointed to see that your reporters did not bother to investigate the accuracy of the numbers of new cases of Lyme reported each year. As someone else commented, that 20,000 quote is hideously underestimated. Next time, I hope you have the courage to quote numbers that are closer to the actual truth.
In the Lyme documentary Under Our Skin, filmmaker Andy Abrahams Wilson (Open Eye Pictures) exposes the cruel dismissal that the medical establishment frequently gives people who are sick and suffering with Lyme. The film opened in April at the Tribeca Film Festival in NYC. Andy is featured in the LDRD's interview series.
Thank you, thank you for bringing this growing epidemic to light. However, as many have already noted, the majority of people suffering with Lyme disease never saw a tick bite, and never had the bull's eye rash. In addition, the tests for Lyme have what one physician refers to as "coin toss sensitivity," meaning that if you toss a coin, you get results that are just about as accurate as using the ELISA or the Western Blot for testing positive. According to ILADs physicians I have interviewed for the Lyme Disease Research Database, the CDC has a long history of ignoring scientific evidence for the existence of chronic Lyme disease. Thanks to CT Attorney General Richard Blumenthal, the IDSA is now being forced to review its Lyme disease treatment guidelines. People who are suffering with Lyme due to misdiagnosis, under-diagnosis, and simple ignorance have long been forced to become their own health advocates, often at a time in their lives when they are extremely sick. I applaud you for airing this segment on the Lyme controversy, yet I am disappointed to see that your reporters did not bother to investigate the accuracy of the numbers of new cases of Lyme reported each year. As someone else commented, that 20,000 quote is hideously underestimated. Next time, I hope you have the courage to quote numbers that are closer to the actual truth.
In the Lyme documentary Under Our Skin, filmmaker Andy Abrahams Wilson (Open Eye Pictures) exposes the cruel dismissal that the medical establishment frequently gives people who are sick and suffering with Lyme. The film opened in April at the Tribeca Film Festival in NYC. Andy is featured in the LDRD's interview series.