Clinical psychologist Sheila Statlender with her son Ari, and her husbandRussell Donnelly. Sheila and Ari both have Lyme disease.
By Michael Morton/Daily News staff
The MetroWest Daily News
Posted Sep 26, 2009 @ 11:44 PM
At times, the charged debate about diagnosing and treating Lyme disease has seen protesters shout down medical conference speakers and backers of officially sanctioned medical responses investigated for financial conflicts of interest.
But in Framingham, two health care providers with opposing views say they're simply trying to do what's best.
For south side resident Sheila Statlender, a clinical psychologist who practices in Newton, that means advocating for more options to deal with Lyme disease, a condition tied to personal medical struggles.
"We just vowed we didn't want this to happen to other families," she said.
But for Dr. Thomas Treadwell, an infectious disease expert at MetroWest Medical Center in Framingham, that means following the existing guidelines he believes in for the tick-borne infection, even when patients with chronic ailments ask for deviation.
"It's terrible for him," Treadwell said of a man he recently saw. "(But) I can't rationalize this."
Traditionally, Lyme disease is treated with antibiotics for 28 days or less.
But some patients receiving late diagnoses and some sufferers of mysterious chronic symptoms search out so-called "Lyme-literate" doctors, those willing to challenge existing guidelines by providing a much longer drug regimen.
Doing so, however, can get medical providers in trouble with state regulators and professional organizations and expose them to lawsuits.
Insurers do not cover the longer treatments.
In response, state Rep. Robert Hargarves, R-Groton, has introduced legislation providing protection from disciplinary action, with Rep. Kate Hogan, D-Stow, and Rep. Jennifer Callahan, D-Sutton, among the co-sponsors of House bill 1148.
Hogan said she became involved after constituents told her stories about their struggles to find expanded treatment.
"For me, it's all about the option," she said.
Hargraves' proposal comes as the Lyme disease burden grows.
In 2008, the state recorded 3,960 confirmed cases, a 33 percent increase from 2,988 the year before, according to the Centers for Disease Control and Prevention.
The 2008 tally placed Massachusetts second among U.S. states.
Callahan has proposed creating a commission to shape the state's Lyme disease response, while Treadwell has gathered some of his residents to reexamine cases from his infectious disease clinic and MetroWest Medical's emergency room.
Although the Bay State's highest rates are still found in the Cape and islands, Lyme has gained a secure foothold in MetroWest.
Milford Regional Medical Center's patient load has been higher than usual this season, while Framingham reported 32 cases for the yearlong period ending Sept. 24.
For the 12-month period before that, the town recorded 22.
"I think physicians are more alert to the signs and symptoms," said Kitty Mahoney, the public health nurse for the town's Board of Health.
But during a Joint Committee on Public Health hearing Tuesday for Hargraves' bill, some doctors testified that cases are often misdiagnosed and can require longer courses of treatment when finally identified.
Other doctors, however, questioned the effectiveness of such a response and described the toxic side effects of antibiotics.
They also called on legislators to avoid singling out Lyme disease for special protection and to avoid removing oversight.
While the CDC acknowledges that symptoms like fatigue, mood problems and muscle pain can continue after standard treatment, it says the cause is unknown.
Lyme-literate doctors argue that the bacteria can surreptitiously linger and call for more antibiotics, but supporters of the existing standards say the symptoms can be tied to other physical and mental issues and point to antibiotics' powerful but potentially dangerous placebo effect.
Still, last year Connecticut Attorney General Richard Blumenthal investigated the Infectious Diseases Society of America, which set the 28-day treatment cap.
His office determined that the society's guidelines panel had financial interests that could bias its decisions, finding that alternative medical opinions had been "improperly ignored or minimized."
An outside arbiter and a newly constituted society panel held hearings in July to determine whether the Lyme disease guidelines should be changed, with results not yet released.
Studies show no benefit from longer antibiotics courses, Treadwell said, given the lack of continued bacterial infection in patients with prolonged symptoms. That, to him, is the crux of the debate.
"I think it's a sad thing," he said, bemoaning both the Legislature's involvement and the rhetoric from both camps.
"Well-meaning people on both sides are tearing into each other."
Like Treadwell, Statlender desires a less polarized debate and feels like patients are caught in the middle.
But the supporter of Ticked Off and other advocacy groups believes greater latitude is needed for both the diagnosis and treatment of Lyme disease.
"The disease is too complex to be held to a recipe," she said.
Until their youngest son became the third child in the family to fall ill, Statlender and her husband, an orthopedic surgeon, accepted the officially approved approach to Lyme disease, with standard tests coming back negative.
But a tip from a support group prompted them to push for a test that had not been offered.
Doctors finally determined in 2002 that all three children had Lyme disease, a diagnosis Statlender herself later received.
All four traveled out-of-state for long-term antibiotic treatment.
"I can't say they're 100 percent," she said of the children, who had suffered headaches, tremors and attention problems. "But they're back in the world able to have lives."
State House News Service material was used in this report.