Lyme: What's The Right Course?

Hartford coverage IDSA hearing

Dr. Steven Phillips, a Wilton physician and former president of the International Lyme and Associated Diseases Society, which is dedicated to addressing Lyme disease, will present research suggesting that patients with chronic Lyme disease have persistent infections. The existing guidelines have hurt his patients, he said.

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Doctors and patients with differing views on how to properly treat Lyme disease will weigh in today as an influential medical society's controversial treatment guidelines come under review.

The debate has particular significance in Connecticut, a hotspot of Lyme disease and home to an impassioned fight over patients who have debilitating chronic symptoms they believe are caused by the tick-borne bacteria.

Many doctors say that there is no compelling evidence the chronic symptoms are caused by Lyme disease and that treating them for Lyme could distract from finding the real underlying problems. But the patients and some doctors say that tests for Lyme are unreliable and miss some Lyme cases, and that mainstream doctors are stopping them from getting the relief they need.

At issue in today's hearing are guidelines developed by the Infectious Diseases Society of America in 2006, which say most cases of Lyme disease can be cured with a short course of antibiotics. The guidelines recommend against long-term antibiotic treatment, something the so-called chronic Lyme camp believes is necessary to treat some cases.

Chronic Lyme advocates say the guidelines — which have been echoed by other mainstream medical groups — have been used to deny insurance coverage for long-term treatment.

The hearing will be held in Washington, D.C., and will be broadcast live online at www.idsociety.org.

The review stems from an investigation by Attorney General Richard Blumenthal, who found that some members of the panel that wrote the 2006 guidelines had conflicts of interest, such as financial stakes in companies involved in Lyme disease tests or treatments.

The infectious diseases society has said the panelists had nothing to gain by recommending short-term treatment. But the society and Blumenthal agreed to a special review of the guidelines, which the society characterized as "an effort to clear the air." The review process will determine whether the guidelines should remain in place or be partially revised or fully rewritten.

The new panel assigned to determine that, which consists of members deemed eligible by a jointly selected medical ethicist, will hear from 18 presenters today, read testimony from 150 people and groups and review medical and scientific literature. The panel hopes to issue a final report by the end of the year.

It's not uncommon for medical guidelines to be revised, but this review is unusual in its use of a public hearing and solicitation of a wide range of views, not just scientific and medical literature, said the panel's chairwoman, Dr. Carol J. Baker.

Baker, a professor at the Baylor College of Medicine, said the panel will be mindful of the people who are suffering and believe they have chronic Lyme disease.

"I really have tremendous compassion for these patients who suffer from chronic pain and neurological loss and their families who are suffering along with them," she said. "And so I'm very enthusiastic that this complete and open-minded process will result in what's best for those patients."

Both sides define the best interest of those patients differently.

Dr. Eugene Shapiro, a Yale School of Medicine professor and a member of the panel that wrote the 2006 guidelines, will present evidence today that treating patients with prolonged courses of antibiotics may be harmful, because of side effects and the possibility that patients actually have other problems that are not being treated. "The scientific evidence is already clear," he said.

Dr. Steven Phillips, a Wilton physician and former president of the International Lyme and Associated Diseases Society, which is dedicated to addressing Lyme disease, will present research suggesting that patients with chronic Lyme disease have persistent infections. The existing guidelines have hurt his patients, he said.

"I've had patients who've been dismissed, I've had patients who've been I would say scorned or scoffed at or belittled. I've had patients that have been given information that's clearly inaccurate," he said.

Some chronic Lyme advocates have raised concerns about the panel's impartiality, but said they are hopeful the panel will be open-minded.

Blumenthal said Wednesday that his focus is on the process, not the results.

"I'm certainly very hopeful that this hearing is real and substantive, giving all sides a full and fair opportunity to present differing perspectives and positions," he said.

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