In response to: Lyme disease medical legislation is the right choice-

By David Itkin, MD- Portsmouth, Sunday, June 6, 2010 (posted below)

http://www.fosters.com/apps/pbcs.dll/article?AID=/20100606/GJOPINION_0102/706069933/-1/FOSOPINION

June 11, 2010

Dear Editor,

It was obvious by the cookie-cutter letter that Dr. Itkin wrote that he is an Infectious Diseases Society of America (IDSA) supporter. It's shameful, but it appears the IDSA has enlisted another patsy to promote their "we are the world" symphony to enlighten the uneducated and try to convince the sick they aren't really sick after all.

Some members in the IDSA's camp, like Dr. Itkin, claim publicly to have compassion for patients who remain ill after their recommended "cost-effective", insurance friendly treatment protocol fails to cure patients.

Rather than treat the sick, as the doctor admits he doesn't, he instead offers them a 45 minute lecture telling them they are either sick with something else (of course doctors can't be wrong), have mysteriously become mentally ill after having a documented tick bite and positive Lyme tests, or are gullible enough to simply think they are benefiting from a placebo effect when they do get better with appropriate treatment.

The doctor did share one thought most can agree with, "The patient-doctor relationship should allow for an individualized approach, for this or any illness." Yet in the same breath he is against a bill (not sure he read it) that provides patients and the doctors treating them a choice of treatment, unlike his beloved IDSA Guidelines. The bill does NOT promote a specific treatment, it only allows choices for both doctors and patients without fear of prosecution.

I truly wish those being sucked into the IDSA's web (for whatever reason) would take the time to actually read the IDSA guidelines to see how restrictive and ridiculous they actually are and read the bills they continue to fight before they ring a ding-ding the old worn out chant... "I don't know what you have, but it isn't Lyme disease and you don't need treatment for it."

They should also read the final report that indicates the IDSA was being way too big for its britches when it wrote the Guidelines and states they need to knock down their ratings for their recommendations or actually provide proof to support them.

If people only realized how unscientific, non-sensical and self-promoting (conflicts of interest) the IDSA Guidelines were, they too would back as far away as possible from the handful of guideline authors who keep pushing them, least they go down with the ship too.

After all, if Camp A was right, there wouldn't be a Camp B.

Lucy Barnes

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ORIGINAL LETTER

Lyme disease medical legislation is the right choice

By David Itkin, MD

Portsmouth

Sunday, June 6, 2010

My concern for legislating medical care, as proposed in HB 1326, relative to immunity from Board of Medicine discipline for prescribing long-term antibiotics for chronic Lyme disease, prompted me to write this letter.

I am an infectious disease physician, who has been practicing in the Seacoast area for 20 years and have seen and treated a large number of patients with Lyme disease. I feel comfortable that the scientific guidelines as advanced by my professional society, Infectious Diseases Society of America and revalidated this past April, are medically sound and simply "work" for the overwhelming majority of my patients.

That said, I recognize that there are rare patients who have chronic multisystem complaints that are not helped with standard treatment for Lyme disease. I have seen many of these patients through my career. Not all medical symptoms fall into a clean diagnosis. Some have been classified as having chronic fatigue syndrome, fibromyalgia, and others. My observation is that some of these individuals seem to have a true, undefinable medical condition that we are currently unable to characterize. There are multiple symptoms including fatigue, muscle pain, activity intolerance, sore throat, tender lymph nodes, disturbed sleep and cognitive complaints. Over the years, many theories have been advanced as to the cause of this disorder. Various viral, bacterial and fungal etiologies have been advanced and refuted. Testing on these patients sometimes demonstrates evidence of either immunologic deficiency or activation, but not in a consistent fashion. Clinical management of these patients is very difficult. In the absence of a specific treatment, management is largely symptomatic. The major portion of a visit to my office for a patient will involve counseling and support. This takes a lot of time and energy on my part. I sincerely wish that there was a "cure" for these patients. It would be a lot easier for all involved to simply prescribe a pill than to spend 45 minutes discussing lifestyle modification, stress management and sleep hygiene.

"Chronic Lyme disease" fits this paradigm. In the absence of an easily treatable and diagnosable disorder, the void has been filled with inaccurate and self-fulfilling testing performed by non-validated laboratories utilizing non-validated guidelines. This is not unique to this illness. I have seen similar "loose" testing and treatment for chronic fatigue syndrome patients. And from a patient's perspective, I understand this. People are ill and are desperate to feel well again. If a carrot is held out, who wouldn't want to grasp for it? It becomes easy to cast those who offer the "cure" as heroes and traditional practitioners as the villains.

Some patients will experience symptomatic improvement on long-term antibiotics. There is a strong placebo effect which has been validated in several scientifically-based, controlled studies. Furthermore, there is a nonspecific anti-inflammatory effect of certain antibiotics (including doxycycline) that can result in some modest symptomatic improvement. Parenthetically, I have seen a number of patients with serious adverse effects related to long-term antibiotics, who feel afraid to discontinue them. I have had a number of patients that have simply wanted me to validate that it was acceptable for them to come off antibiotics.

The patient-doctor relationship should allow for an individualized approach, for this or any illness. Often, after careful consideration of all the risks and benefits, a practitioner will recommend a specific course of treatment, even if it is outside of usual conventions. Good physicians do this on a regular basis.

"Chronic Lyme disease" does not require specific dispensation as was proposed in HB 1326 this year. Like any other medical illness, a provider may decide to offer a treatment that diverges from the accepted scientific guidelines. Even though the vast majority of patients with Lyme disease are well-served with these guidelines, a thoughtful medical evaluation may suggest a different approach. This does not require a law. Opening Pandora's box with legislation puts the government in the position of recognizing other chronic illnesses without scientific validation.

Enacting a law to legitimize a medical condition sets a dangerous legal precedent. Furthermore, such a law as proposed by HB 1326, may actually do patients a disservice. Patients may be given a diagnosis of chronic Lyme disease based on non-validated laboratory testing and the weight of media and popular attention, at the expense of a true and thoughtful medical evaluation. Appropriate medical diagnosis and treatment may be delayed. This would be the price we pay for displacing medical diagnosis and treatment from health care professionals to legislators.

I again must emphasize that I have nothing but respect and compassion for patients who are suffering with chronic illness. These patients deserve the benefit of a thoughtful medical evaluation, not a cookie cutter diagnosis and treatment. A compassionate provider may decide on a case-by-case basis that a patient deserves a treatment that is unconventional. A law is not needed for this. Good medical care should be based on the specific application of evidence-based medicine on a very personal level. These very personal medical decisions should be left to providers, not to politics or public opinion.

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