Hidden Epidemic? Lawmakers enter debate over chronic Lyme disease

Health officials will tell you that Rhode Island has the second highest incidence of Lyme disease in the country, second only to Connecticut.

As a result, Rhode Island lawmakers have taken a particular interest in addressing the Lyme disease problem. A few years ago, they passed legislation that protects doctors who choose to treat patients with long-term antibiotics.

Yet, in Rhode Island, you’re hard pressed to find a doctor willing to treat long term because of medical guidelines that call in to question the existence of chronic Lyme disease.

Sixteen-year-old Stephanie Stabile has been on antibiotics for about two years now.

“I don’t like taking the antibiotics, and I don’t like the treatment. But in the long run, it’s going to get better,“ Stabile said.

Stephanie’s mother, Loren, said her daughter is getting better, especially when you consider where she was three years ago—suffering from pain and memory lapses.

“And then she started with neurological symptoms. She would get the tremors and she would go from hot to cold, hot to cold and she’d fall out of her bed,“ Loren Stabile said.

It wasn’t until she took her daughter to Dr. Charles Ray Jones, a pediatric Lyme specialist in New Haven, Conn., that she got an answer.

“He said Stephanie tested positive for Lyme, and it was a relief at that time not knowing what kind of road we had in front of us. It was still a relief to find out why she was so sick,“ Loren Stabile said.

Stephanie was diagnosed with Lyme disease and two other tick-borne infections. While her daily regimen of pills and regular infusion treatments are tough, she can spend a half-day at school now.

Julie Merolla said she fully believes her son, Matt, now 20, has been suffering from chronic Lyme disease since he was 11. She credits long-term antibiotics prescribed by Jones for his long and continuing journey back to normalcy.

“There’s so much of it everywhere, and people aren’t getting treated. They’re getting told it’s other things,“ Merolla said.

According to Lyme disease guidelines developed by the Infectious Diseases Society of America, there is no such thing as chronic Lyme disease and there is no scientific evidence backing the use of long-term antibiotics.

“In fact, there are three studies out in the past few years that have shown that long-term antibiotics have no value and, in fact, are associated with significant side effects,“ said Dr. Nitin Damle, who practices in Lyme-endemic South County.

Damle pointed to a review article that appeared in the New England Journal of Medicine a couple of years ago.

Not only does it debunk the notion of chronic Lyme disease, it accuses physicians and laypeople who believe in the existence of chronic Lyme disease of forming societies and developing their own management guidelines.

“The media frequently disregard complex scientific data in favor of testimonials about patients suffering from purported chronic Lyme disease and may even question the competence of clinicians who are reluctant to diagnose chronic Lyme,“ the authors said.
“The use of prolonged, dangerous and expensive antibiotic treatments for it is not warranted,“ the article said.

So, which side to believe?

“I believe that there is a growing body of evidence, ample evidence, that suggests chronic Lyme is a problem,“ U.S. Rep. Jim Langevin said.

The Rhode Island Democrat is co sponsoring legislation—House Resolution No. 1179—that would, among other things, establish epidemiological research objectives to determine the long-term course of illness for Lyme disease and determine the effectiveness of different treatment modalities.

The legislation comes on the heels of an antitrust suit by the Connecticut attorney general against the IDSA board that came up with the Lyme guidelines.

“Those members and the decision made was a flawed process and there were conflicts of interest,“ Langevin said.

A representative for the IDSA disputes there were conflicts of interest on the original board. 

The IDSA board has agreed to revisit the guidelines with a new panel. A hearing is scheduled for Thursday.

Jones is being charged by the Connecticut Medical Board with unprofessional conduct. He said the charges were initiated by an estranged spouse in a custody suit.

Read Part 1: Hidden Epidemic? Divide over chronic Lyme disease

Related Links:

Infectious Diseases Society of America: Lyme Disease
Centers for Disease Control and Prevention: Lyme Disease
New England Journal of Medicine: A Critical Appraisal of “Chronic Lyme Disease”
Rhode Island Department of Health: The Chronic Lyme Debate
Time For Lyme
URI Tick Encounter Resource Center
Connecticut Governor’s Anti-trust Lawsuit
Lyme Disease Bill