Topic: IDSA's "conscientious doctors" reply to Editorial
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
The IDSA president-elect and Johns Hopkins responded to the Editorial by the Baltimore Sun Newspaper. See their response below.. it is in with others which are VERY good!
Also posting this so you see what a small local effort can do. This started with a letter to the editor of a smaller paper. Another paper read it. They then researched it.. and now this.
So do be encouraged to get your local area media involved. We are making progress.
Baltimore Sun (MD) Letters to the Editor Originally published December 14, 2006
Clinical evidence of chronic infections
As the letter "Lyme guidelines scientifically sound" (Dec. 9) shows, the infectious disease community unfortunately is largely hiding behind the scientific literature's "evidence base" and ignoring the clinical evidence about chronic Lyme disease patients that is all too evident to other physicians.
Only a few decades ago, the infectious disease community scoffed at the notion of infectious agents causing chronic illnesses.
But we now have incontrovertible proof that infectious agents are associated with chronic diseases. For instance, H. pylori bacteria infection causes ulcers; C. trachomatis causes inflammatory arthritis; and the Epstein-Barr virus can cause cancer.
Chronic Lyme disease patients are ill-served by the squabbling and territorial in-fighting that is only hindering productive inquiry into this debilitating condition.
Instead, the infectious disease community should take this moment to bring intelligent minds together to find effective treatments that can prevent or ameliorate the consequences of such chronic diseases.
Sheila West Baltimore The writer is a professor of opthalmology and epidemiology at the Johns Hopkins University.
Baltimore Sun (MD) Letters to the Editor Originally published December 9, 2006
A culture in denial over Lyme infections
Thanks for the editorial on Lyme disease and the Infectious Disease Society of America's guidelines ("Missing the mark," Nov. 30).
I have a son whose bipolar symptoms are very much related to Lyme disease and associated infections. Even though I wrote a book on the subject, and he has tested positive repeatedly not only for Lyme but for associated infections, he persists in the belief that he doesn't have Lyme disease.
Until there is a change in the culture, my son and thousands like him will either remain ignorant about the care they need or refuse to accept it.
Thanks again for a timely and right-on editorial.
Dave Moyer Penn Valley, Calif. The writer is a member of the International Lyme and Associated Disease Society.
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IDSA-Hopkins response-
Lyme guidelines scientifically sound
There is nothing more heartbreaking to conscientious doctors than to read the charge, as made in The Sun's editorial "Missing the mark" (Nov. 30), that they are not meeting the needs of their patients.
But to the 8,000 members of the Infectious Disease Society of America (IDSA), the controversy about Lyme disease and the IDSA guidelines raised by a handful of doctors has done a grave disservice to patients.
First, some facts:
* The IDSA guidelines are based on established national criteria for evidence-based medicine. This means the panel of Lyme disease experts who developed the guidelines did so by reviewing all valid, peer-reviewed scientific literature on the subject.
* Contrary to the statement in the editorial that the IDSA guidelines claim no antibiotics should be prescribed "beyond initial preventive doses," the guidelines do recommend treatment for up to 28 days with antibiotics for those who have clinical signs confirming the disease. The guidelines also include recommendations for retreatment if objective signs of the disease are established and symptoms persist.
* The guidelines clearly acknowledge that their recommendations do not and should not take the place of the judgment of individual physicians. We know that every person, every patient is different and that each doctor must do what he or she thinks is best for the individual.
* Those who have been diagnosed with so-called "chronic Lyme disease" (i.e., who did not recover after the initial course or courses of antibiotics that cure the disease in the great majority of patients) often have generalized symptoms that may be caused by many diseases other than Lyme. To automatically assume they continue to suffer from Lyme disease, without considering other options, is simply not good medicine.
Also, a small percentage of people do have persistent symptoms such as fatigue and musculoskeletal aches after Lyme disease. But there is no evidence that continued treatment with antibiotics leads to substantial improvement.
Medicine is always evolving, which is why we review the literature at regular intervals and update our guidelines.
When we do, we are obligated to base our guidelines on the best information available.
As new information becomes available, we will respond accordingly.
For the time being, however, our guidelines are based on the best scientific evidence that is available.
Dr. Donald Poretz Alexandria Va. Dr. Paul G. Auwaerter Baltimore The writers are, respectively, the president-elect of the Infectious Diseases Society of America and the clinical director of the Division of Infectious Diseases for the Johns Hopkins School of Medicine.
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Ya know.. I don't think the IDSA or Hopkins will be inviting us to their holiday parties this year. Darn it all!
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Wonderful that someone is paying attention AND that we are getting some press.
Very annoying that they continue to imply that all 8,000 members of the IDSA are in agreement with the few who authored the guidelines. Very misleading. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Areneli
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It will nicely erode Wormser's stance that all 8000 IDSA members support him.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
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quote: It will nicely erode Wormser's stance that all 8000 IDSA members support him.
Maybe I'm being dense but how? It's not clear that either of the writers are members of the IDSA. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Auwaerter is the one who debated Dr. S in Toronto at the IDSA meeting a while back, I believe. Not surprising he is sticking his oar in here.
I am pretty tired of hearing about the 8000 members and the 400 articles. Both of these numbers are misleading. But that is pretty much the middle name of the IDSA lyme guidelines, and makes you wonder if any of their other guidelines are good, or just as flawed. They should be worried that when the lyme guidelines are stomped, the damage is not going to be restricted to that area, but will spill over onto the IDSA officials, their home institutions, the society, and cause suspicion about all their other guidelines. And possibly even all medical guidelines.
Posts: 8430 | From Not available | Registered: Oct 2000
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quote:Originally posted by Tincup: There is nothing more heartbreaking to conscientious doctors than to read the charge, as made in The Sun's editorial "Missing the mark" (Nov. 30), that they are not meeting the needs of their patients.
But to the 8,000 members of the Infectious Disease Society of America (IDSA), the controversy about Lyme disease and the IDSA guidelines raised by a handful of doctors has done a grave disservice to patients.
AWW, c'mon!!! Let's get R E A L! Who are they kidding?!?!
Where's my violin!!??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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AWW, c'mon!!! Let's get R E A L! Who are they kidding?!?! >>>>>>>>>>>>>>>>>>>>>>>>
Everyone but us, it would appear.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
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quote:"This means the panel of Lyme disease experts who developed the guidelines did so by reviewing all valid, peer-reviewed scientific literature on the subject."
This is rich.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
That is the part that got me too Michelle.
ALLLLLL peer-reveiwed scientific literature on the subject?
not. Posts: 1950 | From New Mexico | Registered: Sep 2001
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quote:There is nothing more heartbreaking to conscientious doctors than to read the charge, as made in The Sun's editorial "Missing the mark" (Nov. 30), that they are not meeting the needs of their patients.
Boo hoo.
Uh, I can think of something more heartbreaking. It involves going undiagnosed for years because of flawed tests, losing the ability to work/walk/think etc. due to Lyme borreliosis, until you finally improve with long-term abx.... then getting told you have "post-Lyme syndrome," that your insurance company will no longer cover your treatment, and that you may even lose your doctor because he's being investigated for daring to 'meet the needs of his patients'.
"Conscientious doctors?" Are these guys kidding?
But it's great to see a Hopkins professor bring up the issue of clinical evidence being ignored (even if she doesn't know the whole story behind the scientific literature's 'evidence base').
Posts: 621 | From US | Registered: Jun 2006
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posted
I decided to post this because I want ALL ducks, ducketts, and duckies to read it here.
It seems to me that just a few of the IDSA's membership are speaking for the rest. And if I was a "conscientious doctor" I would be pretty "ticked off" that a small group of such
rigid thinkers and practitioners were representing ME.
Here is what I propose:
From now on, ANYONE who is forced to see an IDSA ducktor, please take your tape recorder with you. Better yet, hide your video camera in your purse if you carry one.
When you have an appt., GET IT ON TAPE what the ducktor believes about the IDSA guidelines. DO NOT LEAVE HIS OR HER OFFICE WITHOUT A STATEMENT REGARDING THOSE GUIDELINES.
Then, at least, we can begin to truly discover what beliefs are held, ducktor by ducktor.
And since there are those here who I imagine can't wait to get new tidbits of information to share with their "dedicated, empassioned" IDSA members,
they will come to know that "whenever and wherever they least expect it, CANDID CAMERA!"
My LLMD is a member of the IDSA. He keeps up with their "misrepresentations of the truth." He would not for one instant support the junk these poor "misguided" ducktors are spewing.
It would be great if we could get a roster of the other, silent, members of the IDSA. Maybe a place to start would just be the Infectuous Disease Ducks in our local phone books.
Having spent a near fortune over the last ten + years for medical care, never to receive any hope of getting better, I would still be willing to
make an appointment with a local ID duck, present my symptoms and my test results and wait for the conscientious person to tell me that there is no treatment for my chronic illness and coinfections.
I would consider it a DONATION to the cause of getting REAL treatment for the thousands of suffering people who, by IDSA standards, have imaginary illnesses!
And you can bet your bippy that I would get every word on TAPE........
because I firmly believe that sooner rather than later these bull-headed, holier-than-thou ducktors will be forced to see the error of their ways
and will end up as defendents in hundreds of lawsuits and as head-hanging, shamed members of the society that we call physicians.
Maybe you can tell that I'm really furious here. I DO find it interesting that some of these IDSA Gods are being compelled to write responses to letters to newspaper editors.
Seems they are getting their feathers ruffled because a few sick people (who aren't really sick) are daring to contradict them and their "guidelines." Well, POOH!
Hear this, all ducktors out there:
If it is your "guidelines" which continue to prevent us from receiving the treatment we most desperately need and if it is YOU who would rather hide behind your white coats and quote
inaccurate data which gives our insurance companies any reason whatsoever to deny coverage for our doctor visits and medications......if it is YOU,
then you better be sure to keep up to date on YOUR insurance premiums (malpractice ones I mean) so you don't find yourselves in the same destitute positions as so many of us here.....
Do you REALLY think that we are going away? Can you possibly convince yourselves that we will stop writing letters to editors and our political representatives, quit holding protests and rallys, stop making phone calls???
Sorry to burst whatever bubbles have you believing you are insulated against the increasingly loud voices we are now being forced to use. Sorry for the inconvenience.
Sorry for your starved, soul-less selves.
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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posted
Conscientious, my foot! I say the leaders of these guidelines should be brought to trial on murder charges.
Posts: 13116 | From San Francisco | Registered: May 2006
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-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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quote:Originally posted by Tincup: * Those who have been diagnosed with so-called "chronic Lyme disease" (i.e., who did not recover after the initial course or courses of antibiotics that cure the disease in the great majority of patients) often have generalized symptoms that may be caused by many diseases other than Lyme. To automatically assume they continue to suffer from Lyme disease, without considering other options, is simply not good medicine.
Do they not realize that the majority of people have been tested for almost every other disease already?
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