posted
note: IDSA is loading guns against States attempting to introduce "problematic" Lyme legislation. Nan
IDSA Infectious Disease Society of America
August 7, 2007
The Honorable Jon S. Corzine Chairman Health and Human Services Committee National Governors Association 444 North Capitol Street, NW, Suite 267 Washington, DC 20001
(Letter also sent to the National Conference of State Legislatures)
Dear Governor Corzine:
I write on behalf of the Infectious Diseases Society of America (IDSA) to bring to the National Governors Association's (NGA) attention problematic Lyme disease legislation that has been introduced in several states.
In making the NGA aware of these legislative efforts, many of which are well-intentioned but therapeutically dangerous, our primary concern is to ensure the best quality in patient care and to protect the public's health and safety.
To this end, we believe it is critically important that you be fully apprised of the widespread consensus within the medical and scientific community about the appropriate treatment of Lyme disease, as well as the medical community's concerns about unproven, potentially harmful treatments for so called "chronic" Lyme disease that are advocated by a small group of physicians.
IDSA represents more than 8,000 physicians and scientists and is widely recognized as the pre-eminent authority on infectious diseases (ID) in the United States. The Society's members focus on the epidemiology, diagnosis, investigation, prevention, and treatment of infectious diseases in the U.S. and abroad.
Our members care for patients of all ages with serious infections, including Lyme disease. In 2006, IDSA published revised practice guidelines for the clinical assessment, treatment, and prevention of Lyme disease.
The development of guidelines requires the review of scientific and medical literature. IDSA's guidelines were developed by a 14-member panel of infectious diseases clinicians and researchers, including physicians with many years of clinical experience treating patients with Lyme disease.
Nearly 400 references of papers and studies are cited in the IDSA guidelines and many, many more were reviewed that did not meet rigorous scientific standards.
As you may know, Lyme disease is a tick-transmitted infection that can cause non-specific symptoms such as muscle and joint pain, fevers, chills, and fatigue. Some patients may continue to experience these symptoms even after a course of antibiotic therapy has killed the Lyme disease bacterium.
A small group of physicians have diagnosed such patients as having "chronic" Lyme disease and advocate treating them with repeated or prolonged courses of oral or intravenous antibiotics.
Such diagnoses and treatments are not supported by the IDSA's practice guidelines, nor are they supported by new Lyme disease guidelines published by the American Academy of Neurology, nor by the vast majority of experts in the field.
Of greatest concern are some states' misguided attempts to legislate the prolonged use of antibiotic therapy for Lyme disease. There are no convincing published scientific data that support the existence of chronic Lyme disease.
Carefully designed and conducted studies of Lyme disease treatments have failed to demonstrate benefit from prolonged antibiotic therapy. Rather, these studies have demonstrated that there is no difference in the measured improvement between patients receiving placebo and patients treated with long term antibiotics.
Furthermore, long-term antibiotic therapy may be dangerous, leading to potentially fatal infections in the bloodstream as a result of intravenous treatment.
Also, although the bacteria that causes Lyme disease does not acquire resistance to antibiotics, long-term antibiotic exposure can lead to drug-resistance among other microorganisms, creating "superbugs" that cannot be treated with currently available drugs.
In summary, far from improving the patient's quality of life, prolonged antibiotic therapy may actually increase the patient's suffering.
While IDSA opposes enactment of legislation that sanctions the use of prolonged antibiotic therapy, we support efforts to hold public hearings on Lyme disease as well as the establishment of legislative commissions to study all aspects of Lyme disease.
Such hearings or commissions could play an important role in educating both state legislatures and the general public about the controversy surrounding treatment for Lyme disease.
In order to ensure that these educational efforts are science-based, IDSA strongly urges the inclusion of board-certified ID physicians who represent a balanced perspective on Lyme disease.
For more information on Lyme disease and the recommendations by the vast majority of experts in the field, please visit websites for IDSA (www.idsociety.org), the Centers for Disease Control and Prevention (www.cdc.gov), the National Institute of Allergy and Infectious Diseases (www.niaid.gov), the American Academy of Neurology (www.aan.com), or the American College of Physician(www.acponline.org).
I hope you will contact Mark Leasure at IDSA if you have questions or would like the names of board-certified ID physicians who may be willing to provide further guidance on appropriate treatments for Lyme disease.
Mr. Leasure may be reached at (703) 299-0200 or via e-mail at [email protected].
Best Regards,
Henry Masur, MD, FIDSA IDSA President
cc:
Matt Salo, HHS Committee Director, NGA
Kathleen Nolan, Health Division Director, NGA Center for Best Practices
Enclosures:
IDSA's Practice Guidelines for the Treatment of Lyme Disease
IDSA's Press Release on Practice Guidelines for the Treatment of Lyme Disease, October 2, 2006
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
The only agencies/lobby groups they can reference is themselves. That makes alot of sense !
For more information on Lyme disease and the recommendations by the vast majority of experts in the field, please visit websites for IDSA (www.idsociety.org), the Centers for Disease Control and Prevention (www.cdc.gov), the National Institute of Allergy and Infectious Diseases (www.niaid.gov), the American Academy of Neurology (www.aan.com), or the American College of Physician(www.acponline.org
I doubt they going to provide names of ILADS ID drs to answer questions!
This is a big power play. Thank you Nan for finding this. I hope LDA will have a response.
North.
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
this sh-t just doesn't make any sense at all. what are these peope doing? they are lying, and demonstrably so. are they so arrogant that they don't realize that their lies are so easily revealed?
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
As Dr. X pointed out, "The IDSA version of 'good science' comes from Forbes Magazine, the Washington Post and Newsday. They are on the character assassination trail."
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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bettyg
Unregistered
posted
P. U. ... stinks like hog wash again!
this letter was done with creative imagination! i saw so much BS, it wasn't even funny.
thanks nan for sharing this blarney w/us all.
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" What are Neurological Complications Of Lyme Disease? Lyme disease is caused by a bacterial organism that is transmitted to humans via the bite of an infected tick. Most people bitten by an infected tick develop a characteristic skin rash around the area of the bite. The rash may feel hot to the touch, and vary in size, shape, and color, but it will often have a "bull's eye" appearance (a red ring with a clear center). However, there are those who will not develop the rash, which makes Lyme disease hard to diagnose because its symptoms and signs mimic those of many other diseases.
Seven to 10 days following an infected tick's bite, the first stage of Lyme disease begins with flu-like symptoms such as fever, chills, swollen lymph nodes, headaches, fatigue, muscle aches, and joint pain.
Neurological complications most often occur in the second stage of Lyme disease, with numbness, pain, weakness, Bell's palsy (paralysis of the facial muscles), visual disturbances, and meningitis symptoms such as fever, stiff neck, and severe headache. Other problems, which may not appear until weeks, months, or years after a tick bite, include decreased concentration, irritability, memory and sleep disorders, and nerve damage in the arms and legs.
Is there any treatment?
Lyme disease is treated with antibiotics under the supervision of a physician.
What is the prognosis?
Most individuals with Lyme disease respond well to antibiotics and have full recovery. In a few patients symptoms of persisting infection may continue or recur, requiring additional antibiotic treatment. Varying degrees of permanent joint or nervous system damage may develop in patients with late chronic Lyme disease . In rare cases, some individuals may die from Lyme disease and its complications. " end quote
Posts: 339 | From nowhere | Registered: May 2007
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posted
I think it's funny how the IDSA keeps putting quotes around the word "chronic" to emphasize they don't know what the word really means.
Posts: 339 | From nowhere | Registered: May 2007
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posted
There article references the National Institute of Allergy and Infectious Diseases. so this is what it says:
" Institutes and Centers Working on Lyme Disease The principal mission of NIAID is to study infectious diseases and host immune defense mechanisms; therefore, the Institute conducts and supports most of the basic and clinical research on Lyme disease funded by the National Institutes of Health (NIH). However, because Lyme disease affects different tissue/organ systems of the body, it is also a matter of great concern to other NIH institutes and centers.
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) supports research on chronic Lyme -induced arthritis, including the role of the immune system and genetic factors in contributing to its development. The National Institute of Neurological Disorders and Stroke (NINDS) supports research to characterize the neurological, neuropsychological, and psychosocial manifestations of early and late Lyme disease in both adults and children, as well as to characterize pathogenic mechanisms associated with the neurological symptoms of chronic Lyme disease . The National Center for Research Resources (NCRR) provides resource support (non-human primates) for basic and clinical studies on both acute and chronic infection , as well as support for testing and developing candidate vaccines for Lyme disease. In addition, the Fogarty International Center (FIC) funds research on Lyme disease abroad, and the National Institute on Aging (NIA) and the National Institute of Mental Health (NIMH) focus on those aspects of Lyme disease that relate to their specific mission. ....... "
Duhhh, I would think that would validate that "CHRONIC" Lyme actually does exist, right?
Posts: 339 | From nowhere | Registered: May 2007
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You can send a rebuttal to this letter by writing to Gov. Corzine of NJ, Governor Jon S.Corzine Health and Human Services Committee National Governors Association 444 North Capitol Street, NW, Suite 267 Washington, DC 20001
And you can reach the State Legislators group at the address below. Check out the website:
Matt Salo, HHS Committee Director, NGA and Kathleen Nolan, Health Division Director, NGA Center for Best Practices at: 444 North Capitol Street, N.W., Suite 515 | Washington, D.C. 20001 Washington Office: Tel: 202-624-5400 | Fax: 202-737-1069 |
Ann - OH
IDSA Infectious Disease Society of America
August 7, 2007
The Honorable Jon S. Corzine Chairman Health and Human Services Committee National Governors Association 444 North Capitol Street, NW, Suite 267 Washington, DC 20001
(Letter also sent to the National Conference of State Legislatures)
Dear Governor Corzine:
I write on behalf of the Infectious Diseases Society of America (IDSA) to bring to the National Governors Association's (NGA) attention problematic Lyme disease legislation that has been introduced in several states. In making the NGA aware of these legislative efforts, many of which are well-intentioned but therapeutically dangerous, our primary concern is to ensure the best quality in patient care and to protect the public's health and safety. To this end, we believe it is critically important that you be fully apprised of the widespread consensus within the medical and scientific community about the appropriate treatment of Lyme disease, as well as the medical community's concerns about unproven, potentially harmful treatments for so called "chronic" Lyme disease that are advocated by a small group of physicians.
IDSA represents more than 8,000 physicians and scientists and is widely recognized as the pre-eminent authority on infectious diseases (ID) in the United States. The Society's members focus on the epidemiology, diagnosis, investigation, prevention, and treatment of infectious diseases in the U.S. and abroad. Our members care for patients of all ages with serious infections, including Lyme disease. In 2006, IDSA published revised practice guidelines for the clinical assessment, treatment, and prevention of Lyme disease. The development of guidelines requires the review of scientific and medical literature. IDSA's guidelines were developed by a 14-member panel of infectious diseases clinicians and researchers, including physicians with many years of clinical experience treating patients with Lyme disease. Nearly 400 references of papers and studies are cited in the IDSA guidelines and many, many more were reviewed that did not meet rigorous scientific standards.
As you may know, Lyme disease is a tick-transmitted infection that can cause non-specific symptoms such as muscle and joint pain, fevers, chills, and fatigue. Some patients may continue to experience these symptoms even after a course of antibiotic therapy has killed the Lyme disease bacterium. A small group of physicians have diagnosed such patients as having "chronic" Lyme disease and advocate treating them with repeated or prolonged courses of oral or intravenous
Page Two - Chairman Corzine
antibiotics. Such diagnoses and treatments are not supported by the IDSA's practice guidelines, nor are they supported by new Lyme disease guidelines published by the American Academy of Neurology, nor by the vast majority of experts in the field.
Of greatest concern are some states' misguided attempts to legislate the prolonged use of antibiotic therapy for Lyme disease. There are no convincing published scientific data that support the existence of chronic Lyme disease. Carefully designed and conducted studies of Lyme disease treatments have failed to demonstrate benefit from prolonged antibiotic therapy. Rather, these studies have demonstrated that there is no difference in the measured improvement between patients receiving placebo and patients treated with long term antibiotics.
Furthermore, long-term antibiotic therapy may be dangerous, leading to potentially fatal infections in the bloodstream as a result of intravenous treatment. Also, although the bacteria that causes Lyme disease does not acquire resistance to antibiotics, long-term antibiotic exposure can lead to drug-resistance among other microorganisms, creating "superbugs" that cannot be treated with currently available drugs. In summary, far from improving the patient's quality of life, prolonged antibiotic therapy may actually increase the patient's suffering.
While IDSA opposes enactment of legislation that sanctions the use of prolonged antibiotic therapy, we support efforts to hold public hearings on Lyme disease as well as the establishment of legislative commissions to study all aspects of Lyme disease. Such hearings or commissions could play an important role in educating both state legislatures and the general public about the controversy surrounding treatment for Lyme disease. In order to ensure that these educational efforts are science-based, IDSA strongly urges the inclusion of board-certified ID physicians who represent a balanced perspective on Lyme disease.
For more information on Lyme disease and the recommendations by the vast majority of experts in the field, please visit websites for IDSA (www.idsociety.org), the Centers for Disease Control and Prevention (www.cdc.gov), the National Institute of Allergy and Infectious Diseases (www.niaid.gov), the American Academy of Neurology (www.aan.com), or the American College of Physicians (www.acponline.org).
I hope you will contact Mark Leasure at IDSA if you have questions or would like the names of board-certified ID physicians who may be willing to provide further guidance on appropriate treatments for Lyme disease. Mr. Leasure may be reached at (703) 299-0200 or via e-mail at [email protected].
Best Regards,
Henry Masur, MD, FIDSA IDSA President
cc:
Matt Salo, HHS Committee Director, NGA
Kathleen Nolan, Health Division Director, NGA Center for Best Practices
Page Three - Chairman Corzine
Enclosures:
IDSA's Practice Guidelines for the Treatment of Lyme Disease
IDSA's Press Release on Practice Guidelines for the Treatment of Lyme Disease, October 2, 2006
David Whelan. "Lyme Inc. Ticks aren't the only parasites living off patients in borreliosis-prone areas." Forbes, March 12, 2007.
Jason Feifer. "Combat Zone. There's No Neutral Ground in War Of Information About Lyme Disease." Washington Post, May 15, 2007; HE01.
Jamie Talan. "A Rift Over Lyme Disease. Experts are split over diagnosis and treatment of the tick-borne illness." Newsday, May 22, 2007.
posted
Write and DO mention those pages from NIH/NIAID. If they're still calling it chronic lyme, it shows what ideologues the IDSA for really are (as opposed to scientists).
Might also be good to mention that the CDC and NIH have found Lyme to be intracellular, which IDSA denies. Government officials will trust government agencies over ILADS, etc.
If tons of people write we might be able to turn this around and show them how and why Blumenthal's investigation is on the right track.
Posts: 621 | From US | Registered: Jun 2006
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-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I posted this letter in the medical forum today not realizing that it was already posted over here.
Borrelia Brain had a good idea of either LDA or ILADS writing a response and having lyme patients sign it. Hopefully BB will come over here and put his complete idea in this thread. Does anyone know if ILADS or LDA has responded to this letter?
Maybe we should search out the letters that IDSA has sent to various places making their case and make our own case. I wonder if ILADS has seen all of these letters?
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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