Topic: IDSA tells legislators again- no such thing as chronic Lyme
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I guess they think if they keep singing this same old tune that some day someone stupid might believe them?
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February 2, 2009
The Honorable Jonathan A. Harris Chairman Committee on Public Health Connecticut General Assembly Legislative Office Building, Room 3000 Hartford, CT 06106-1591
Dear Senator Harris:
I write on behalf of the Infectious Diseases Society of America (IDSA) to urge you to oppose Connecticut House Bill No. 5625, which sanctions the use of long- term antibiotic therapy to treat Lyme disease and would protect physicians, who administer such therapies, from disciplinary action.
In urging your opposition to this legislation, 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.
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, and difficulties with concentration or memory loss.
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.
Many of these so called ``chronic'' Lyme diagnoses are supported by laboratory tests that are not evidence based and are not regulated by the Food and Drug and Administration.
Even more troubling, physicians that diagnose ``chronic'' Lyme disease often advocate treating patients with repeated or prolonged courses of oral or intravenous antibiotics that have no proven value other than an anti-inflammatory response in some individuals, and which may in fact do more harm than good.
Such diagnoses and treatments are not supported by the IDSA practice guidelines, nor are they supported by Lyme disease guidelines published by the American Academy of Neurology, nor by the vast majority of experts in the field.
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 antibiotics.
Furthermore, the scientific evidence that 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 House Bill 5625, we would support efforts to hold public hearings on Lyme disease.
We believe that such hearings could play an important role in educating Connecticut legislators and citizens about the controversy surrounding the treatment of this debilitating condition.
However, in order to ensure that legislators get a science-based assessment of appropriate treatments for Lyme disease, IDSA strongly urges you to invite board-certified ID specialists who support evidence-based medicine to testify at all public hearings and we would be happy to provide the names of such individuals.
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,
Anne Gershon, MD, FIDSA IDSA President
Page Three - Representative Harris
Enclosures: IDSA's Practice Guidelines for the Treatment of Lyme Disease
David Whelan. ``Lyme Inc. Ticks aren't the only parasites living off patients in borreliosis-prone areas.'' Forbes, March 12, 2007.
Feder et al. A Critical Appraisal of ``Chronic Lyme Disease.'' New England Journal of Medicine, October 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
They say including physicians with many years of clinical experience treating patients with Lyme disease.
Do any of them have the kind of years of clinical experience our LLMDs have?
We have LLMDs with decades of experience treating Lyme patients.
Who do they have who treats?
And aren't there some early published studies by IDSA authors about the relapsing nature of these diseases?
And what about scientific studies showing the Lyme bacteria in blood and tissues?
We as patients know that everything said here goes against a fairly widespread patient experience of improvement from antibiotic treatment -
whether personal experience, support group experience, the UOS film, Pam's book, etc.
Posts: 13117 | From San Francisco | Registered: May 2006
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tincup, have you heard of anyone reading PJ LANGHOFF'S HOT OFF THE PRESS NEW BOOK,
no. 3 of 3 in series of IT'S ALL IN OUR HEADS...
called THE BAKERS DOZEN, ...fridge; junk science; i can't remember all the details.
it's ALL ABOUT THE IDSA and has over 1000 links she has found quoting them saying this and that.
she didn't offer LARGE print on this book so i'm having a hard time on the 526 pages of SMALL print with no double spacing between paragraphs to read this.
but in what i lately read in last few nights, IDSA has stated there is CHRONIC LYME DISEASE and she goes back to what year and article/links this was said in.
she leaves it up to us who is right, but shows the links.
i to read with distain about them having ONLY ID drs. who TREAT LYME PATIENTS!! HOG WASH BIG TIME!
each of idsa letters is pure HOG WASH; where they keep rolling around in the mud...
anyway, tincup, contact whoever to let them know PJ's book is available to buy from AMAZON now; i was in the early mailings of 1st offer of it.
came about 1 week ago; shortly after being released.
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Perhaps Senator Harris needs to hear from alot of people with chronic lyme who can tell him that chronic lyme does exist and the reason we have chronic lyme is because Dr's like the author of that letter do not know how to recognize, diagnose or treat lyme disease properly!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Ok,I will do that but still wondering who decides who in this panel? Who do they answer to? Are they run under the government?...Is IDSA a government agency? Sorry just trying to figure this all out. I have just always been the type that if I have a problem with someone, I go over their head to the real person in charge.
Ann
-------------------- If you keep doing nothing...nothing changes!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
BG..
I have not read books, the same reason you have a hard time.. I can't see the print. But I've heard they were very good.
Lakes...
Good for you wanting to know more.
I'll try to answer.
You said.. "Ok,I will do that but still wondering who decides who in this panel?"
It has been decided. The IDSA picked the panel with the oversite of an ombudsman.
You said.. " Who do they answer to?"
They answer to the Attorney General and the agreement.
You said... " Are they run under the government?...Is IDSA a government agency?"
The are an independent medical organization with "friendly ties" to everyone who has cash in their pocket. And it is more like they run the government... due to the fact they feed the government information (not always correct) and without question, the government believes them.
posted
Ann: the "panel" I think you're referring to is the Public Health Committee of the Conn. State Legislaure. The IDSA letter was written to the the Public Health Committee opposing pending bill 6200 (formerly 5625), the pending Lyme Bill in the State Legislature that would protect docs from harassment and sacntion by the Public Health Dept. for prescribing long-term antibotics to chronic Lyme patients.
This "panel" is different from the IDSA panel which is currently reviewing Lyme guidelines.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
Isn't there a rebuttal to everything Gershon wrote?
Like the IDSA authors themselves having written earlier papers indicating chronic infection?
Recent studies showing some efficacy from longterm tx? Their docs don't treat longterm.
Has anyone here had a chance to go through PJ's new book and make some comments? Thx.
Posts: 13117 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
robin,
i'm commenting a little as i read it. with my LOW vision and such small print, and NO double spacing between paragraph; i'm having one heck of a time.
i've not read pam w's book yet; waiting for it to arrive. but they sound like they are both on the same wave length.
pj presents things for reader to determine which is correct and has over 1000 links printed and many more not printed.
covered this elsewhere but at least 10 plus years ago, IDSA was using term CHRONIC LYME disease and she showed the links/names of articles written.
i'll update as i read more. i started a post but NO ONE replied at ll.
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