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Lyme treatment gets hearing

Washington session starts re-evaluation process

In Trish McCleary’s neighborhood, lime green ribbons still adorn the roadside trees. Ribbons were tied to trees, fences, front porches and other structures all across the country on Wednesday, July 29 to highlight a hearing in Washington D.C. the following day that could change the treatment standards for the disease. Christopher Tanguay. (click for larger version)
July 29, 2009
STURBRIDGE — The lime green ribbons may have since been removed from the trees on the Town Common but the effort that first put them there is as strong as ever.

The ribbons, which were tied around the trees in May in recognition of Lyme Disease Awareness Month, were the initial campaign of Trish McCleary, a long-time Lyme sufferer and founder of SLAM — Sturbridge Lyme Awareness of Massachusetts.

Earlier this week, the National Capital Lyme and Tick-Born Disease Association announced a nationwide push for Lyme patients — as well as families, friends and neighbors — to display the green ribbons, highlighting what could be the turning point in the lives of Lyme sufferers.

On Thursday, July 30, the Infectious Diseases Society of America (IDSA) was slated to hear from 18 speakers on a wide range of Lyme-related topics in the Ronald Regan building in Washington D.C. to begin the process of re-evaluating the current Lyme treatment guidelines, which were compiled by what was later found to be an anything but impartial panel.

In a written statement, McCleary, who has experienced everything from forgetfulness to full body paralysis as a result of more than 10 years with Lyme disease, said, "These guidelines mean our lives."

"If these guidelines aren't changed, people continue to die," McCleary continued. "If they aren't changed, people who are sick don't go to Lyme Doctors because they just can't afford to."

Lyme disease can bring with it, a myriad of symptoms including chronic fatigue, memory loss, cognitive difficulties, dyslexia, loss of motor function, localized numbness, arthritis, seizures, sensory malfunction, migraines, nausea and vomiting, loss of speech, partial and full body paralysis and death.

The nationally accepted course of treatment for a diagnosed case of Lyme disease — what is covered by most major insurance carriers — is four weeks of the antibiotic doxycycline.

What the guidelines do not address is chronic, or persistent Lyme disease, which many doctors do not actively fight, as treatment outside the parameters of their insurance providers could mean suspension of their medical licensure. Some doctors have taken to accepting cash payments for rigorous Lyme treatment, leaving no indicting paper trail.

"Because Lyme disease isn't listed as a chronic illness, doctors cannot do long term treatment for it," said State Rep. Anne Gobi, D-Spencer, who recently attended a SLAM meeting. "Besides being such a burden to them physically and emotionally, now it's a burden to them financially."

Gobi said that prior to meeting McCleary and her group, and viewing the Andy Abrahams Wilson documentary "Under Our Skin," which chronicles the lives of several people battling chronic Lyme, "I guess I was one of those people, I've been out, I've taken ticks off me … but to hear what these people have gone through and to hear how debilitating and life altering it is," was moving.

"It was definitely eye-opening for me," Gobi added.

From her office in Boston on Wednesday, Gobi explained, "This hearing tomorrow all comes out of what happened in Connecticut and the Attorney General filing suit."

An investigation led by Connecticut Attorney General Richard Blumenthal uncovered critical flaws in the treatment guidelines that do not address Lyme past the initial four-week period.

"My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists," Blumenthal said after the May 1, 2008 ruling that ordered a new panel be made to reassess the established guidelines.

"The IDSA's panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science," Blumethal said.

In fact, more than half of the 16 IDSA panelists held patents on Lyme treatment drugs and testing kits, had worked with insurance companies on their regulations for Lyme coverage, or had contributed to documents that were later used to corroborate IDSA's stance, all of which are in direct violation of IDSA's conflict-of-interest policy.

Gobi said that while the ball begins to roll on the national Lyme scene, here in Massachusetts, lawmakers are working on a few bills that would change the way Lyme is addressed here in the Bay State.

Bill 1148, which will be heard in September Gobi explained, will include a definition of and provisions for treatment of chronic Lyme. A second bill sponsored by State Rep. Jennifer Callahan, D-Sutton, advocates regular Lyme screenings and the formation of a commission to address Lyme and other infectious disease issues.

"I'm definitely going to do all that I can to make sure these move along," Gobi said. "It's not just a singular disease, it really effects the whole family," she added, equating the impacts of a severe cases of Lyme that of cancer.

The Representative said citizens can help push these bills through as well by contacting their individual Representatives and Senators and urging them to support the Lyme conscious initiatives.

Gobi said, "The more calls people can get, the more e-mails the Representatives and Senators can get to let them know this is a major issue and needs to be addressed, the better."

"It was just something I thought I knew about," Gobi concluded. "But I obviously did not."

News staff writer Christopher Tanguay may be reached at (508) 909-4132, or by e-mail at ctanguay@stonebridgepress.com.

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