posted
wow, it looks like the Philadelphia Weekly hit a nerve with their article! I wish Pam Weintraub and some of the ILADS and LDA members had time to respond. It would be nice to have the respective Presidents of those associations respond to the IDSA President's inaccurate comments.
I only saw this one comment from the IDSA President. Are there more comments?
Thanks for posting this!
Fuzz
Posts: 503 | From Maryland | Registered: Oct 2007
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posted
I was going to suggest that the "Good Dr." get a list of "Pen-Pals" willing to correspond with inmates in facilities near Annandale, Va. Also, one final tip, should the "Good Dr." drop the soap in the communal showers,--Please, Doc, don't bend over to pick it up.--
Boy, aren't they a bunch of "blow-hards"--- From their site:
Contact Us
We welcome your questions and comments. Please use the feedback form below or contact IDSA at:
1300 Wilson Blvd Suite 300 Arlington, VA 22209 Phone: (703) 299-0200 Fax: (703) 299-0204
Complete the following form with as much detailed information as possible.
We make every attempt to respond to all requests for information within 48 hours. We are unable to respond to phone or e-mail requests for referrals, or to patient or physician requests for treatment information or recommendations.
Posts: 249 | From Northern NJ | Registered: Jul 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I find it so beyond odd that the IDSA has time to sit and look for these articles and formulate a response. This is really getting to be too much!!
"The IDSA Lyme disease guidelines are recommendations, not requirements, for physicians. We do not develop nor do we have control over their use by insurance companies. "
If this is true then why isnt someone investigating the insurance companies?
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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bettyg
Unregistered
posted
up to copy later today, an for many of us to respond to pres. of idsa.......
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posted
There are already 4 great responses - one from Dr S from CA!
Lets add more!!!
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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bettyg
Unregistered
posted
COPYING this here to read and breaking it up for neuro lymies like me!
Letters
The establishment responds on Wi-Fi and Lyme.
Tick Shlock ***********
On Tara Murtha's recent cover story about her battle with Lyme disease:
The Infectious Diseases Society of America (IDSA) is the nation's largest medical group of infectious disease specialists.
We are simply not the ``white-haired dudes pushing paperwork in offices,'' as your story suggests.
Medical research shows:
Lyme disease is usually treated successfully with no more than 10 to 28 days of oral antibiotics.
If symptoms persist, your doctor should reevaluate your original diagnosis and see if you might be suffering from another illness.
Giving antibiotics for months or years to treat Lyme disease is ineffective, expensive and most of all, potentially harmful.
If the antibiotics are given intravenously, there's an increased risk of complications such as infection or formation of blood clots.
Prolonged treatment leads to an overuse of antibiotics, which in turn causes germs to become stronger and more resistant to antibiotics and leaves us defenseless against other infections.
The IDSA Lyme disease guidelines are recommendations, not requirements, for physicians.
We do not develop nor do we have control over their use by insurance companies.
It is not true, as your story implies, that panel members had financial interests that affected their recommendations in the guidelines.
In fact, supporting long-term antibiotic therapy would have been much more lucrative for our members, but the evidence does not support this approach.
The guidelines went through a rigorous, multilevel review process by experts OUTSIDE the panel to ensure the final guidelines were relevant, accurate and balanced. ******************************
Finally, the investigation launched by the Connecticut attorney general Richard Blumenthal never questioned our science, and it ended without imposing any fines or penalties.
IDSA's advice to patients is unchanged until there are valid medical reasons to change the recommendations.
DONALD PORETZ, M.D. President Infectious Diseases Society of America --------------------------------------------------------------------------------
Mail or Email Us!
All editorial mail should be typed and include your name, address and phone number.
Letters may be edited for space and/or clarity. ***********************************************
You can still send your comments the old-fashioned way to:
All other arts and entertainment: Tara Murtha at [email protected] **********************************************
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4 Comments ***********
Permalinkmikepappa 16 hours ago 1 point Please login to rate.
It may be true that Lyme can be cured with 30 days of antibiotics, IF the patient is not co-infected, and IF treatment is prompt.
However, I know of three people in the last month who I met who, in spite of known deer tick bites, who live in endemic areas, and with clear EM rashes, were not offered blood testing of any sort.
They were not advised that ticks could carry diseases other than Lyme, and were not even advised what signs to look for, and 2 of the 3 were given no antibiotics whatsoever.
Given the obviously poor level of awareness and training on the part of the medical profession, these people will probably be doomed to pursuing extensive, expensive treatment years from now, when they are unable to ignore their failing health any longer.
So you may as well reword that statement to:
LYME DISEASE IS USUALLY NOT TREATED OR RECOGNIZED AT ALL IN THE EARLY STAGES, AND THEREFORE, ESSENTIALLY LEADS TO THE CLINICAL FAILURE OF SHORT COURSES OF ANTIBIOTICS.
The Attorney General of the State of CT investigated the IDSA for nearly two years, and his findings are public record at
which reads in part, 'Blumenthal added, "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests --
in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion. '
Please stop trying to cover up your errors, and have the integrity to make it right.
Raphael Stricker, MD 12 hours ago 1 point Please login to rate.
Tick Block
Donald Poretz, head of the Infectious Diseases Society of America (IDSA), presents his biased view of "medical research" on Lyme disease.
Here's what the research really shows:
1. The diagnosis of Lyme disease is often missed, and patients who go undiagnosed may develop persistent infection and symptoms that do not respond to IDSA's standard 10-28 days of antibiotics.
2. Longterm antibiotics have been shown to be helpful in patients with persistent symptoms of Lyme disease.
If the antibiotics are given carefully as described in the guidelines of the International Lyme and Asociated Diseases Society
(www....),
they are safe and generally well tolerated.
3. Other chronic diseases such as
tuberculosis, leprosy and Q fever are treated with antibiotics up to three years according to standard IDSA protocols.
In these cases, antibiotic treatment is considered justifiable and appropriate, and the same goes for chronic Lyme disease.
4. The IDSA Lyme treatment guidelines have been adopted by government agencies, medical organizations and insurance companies.
They are used to control the treatment of Lyme disease by individual physicians and to prosecute those physicians who do not follow their "recommendations".
As such, the IDSA guidelines have taken on the weight of law, and their anticompetitive nature is what prompted the antitrust investigation of the Connecticut Attorney General. They go far beyond simple "recommendations". ********************************
5. Longterm antibiotic therapy with generic drugs is not lucrative for IDSA members.
In fact, caring for chronically ill Lyme patients is a pain in the neck for infectious disease specialists.
In contrast, promotion of patented Lyme testing, patented Lyme vaccine development and expert consulting for insurance companies is extremely lucrative for IDSA members.
This is where the conflict of interest lies, and the panel members who formulated the IDSA guidelines had plenty of these conflicts.
6. Dr. Poretz' banal spin on the Connecticut Attorney General's settlement is at odds with the damning nature of the findings of the investigation, available at
The refusal of Dr. Poretz and IDSA to take the charges seriously in this process speaks volumes about IDSA's cavalier attitude toward Lyme disease, which leaves thousands of patients suffering just like Tara Murtha.
Raphael Stricker, MD California Lyme Disease Association
reply /people/da272abfa520b05c9cbdfb887f09c89c/
**********************
LymePatientAdvocate 7 hours ago 1 point Please login to rate.
On IDSA's president's response to Tara Murtha's, a Lyme patient's battle for recovery:
Dr. Portez, I hope this title Tick Shlock is not being used to belittle the seriousness of Lyme and tick borne disease.
You say: "Lyme disease is ``usually treated successfully'' with no more than 10 to 28 days of oral antibiotics.
What happens to those who are not successfully treated?
What if long term antibiotics is the treatment some need because ``they are unusual'' and were NOT SUCCESSFULLY TREATED with 10 to 28 days?
Does a patient get ``no more than'' 10 days, 28 days, or 14 days?
What if 40 days or 120 days cures me because I have complications?
How do doctors follow these directives? Do they give 10 days, 28 days, or do they dare to prescribe more if they deem necessary?
Dr. Portez: "Giving antibiotics for months or years to treat Lyme disease is ineffective, expensive and most of all, potentially harmful."
My case is one of thousands, where every word of this statement simply does not fit. I was devastated by symptoms from tick borne diseases and recovered after long term antibiotics.
If the IDSA Guidelines are "only recommendations," then IDSA could stop defending these guidelines as if their lives depended on them.
Or perhaps somehow, the IDSA's life does depend on universal acceptance of their guidelines.
My life depends on everything the IDSA guidelines do not say and indeed my life has been saved by treatments that are not ``recommended'' by the IDSA guidelines.
Like other Lyme patients, I am not lucky enough to fall into the "usually treated successfully" group of IDSA-inside-the-bell-curve-patients.*
We continually try to tell you that we are devastated, severely sick patients whose only hope of any kind of recovery has been with long terms of antibiotics. Why do you deny that we exist?
Dr. Portez, you must be pushing paperwork in an office!
Have you ever seen a Lyme patient who is devastated by symptoms? Have you ever spoken to one? Have you ever asked us what is happening? Haven't you ever seen a patient recover after long term antibiotics?
There have been hundreds of articles published in newspapers and many television news spots about the suffering of Lyme patients. What can we assume about you that you continue to ignore it all?
If you don't think of our suffering; if you do not have the ability to listen to us, then you are at the very best, ``white-haired ``Hearing-Impaired'' dudes pushing paperwork in offices.''
In reality, you are white, black, red, blond, brown haired or bald headed dudes that could be helping if you would only listen.
Mary Budinger, Phoenix 2 hours ago 1 point Please login to rate.
Long term antibiotics are standard of care in a variety instances, including patients with TB and orthopedic patients with post operative infections.
Yet IDSA argues chronic Lyme patients, who present with multiple infections, should be denied an extended course of antibiotics. Something is fishy.
The head of IDSA points out that long-term antibiotic therapy would be much more lucrative for doctors.
But they don't recommend it because ``it leads to overuse of antibiotics.''
IDSA needs a better PR firm to write their letters.
We have doctors writing prescriptions for Vioxx that killed 60,000 people.
We have doctors writing prescriptions for maximum strength Lipator even though we know it causes more problems than it solves. And so on.
IDSA is about 30 years too late to be worrying about overuse of antibiotics.
For some people who suffer terribly with Lyme, long-term antibiotics make the difference between life and death. Why would IDSA deny them life?
IDSA is adamant in its denial that Lyme disease can take hold in the body and persist long after the initial infection. It reminds me of how for 20 years or more, the powers that be officially denied that smoking was hazardous to our health. ISDA is woefully behind the times.
Perhaps IDSA has been charged with obscuring the fact Lyme is a bio-weapon, engineered after WWII in a U.S. germ laboratory on Plum Island, NY. Why else might they deny we are in the midst of a growing epidemic of Lyme and that is a very tough disease to get rid of?
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