Lyme Disease On Rise As Mass. Seeks New Solutions

Excerpted from WBUR  ( Posted: 08/08/2011) 

From the back deck of Jayme Kulesz’s house in Groton, you can see a neatly trimmed green lawn that joins the woods and a small pond. But she sees “a haven for ticks.”

What’s changed Jayme Kulesz’s perspective is Lyme disease and what it’s done to her and her daughter, Kelly Kulesz. For years, Kelly Kulesz had symptoms ranging from a lack of concentration, light sensitivity, mood swings, memory loss and stomach cramps.

“I’d take her to the emergency room with these horrible stomach pains and they could never find out what was wrong with her,” Jayme Kulesz said. “It’s not one of the first symptoms you think of with Lyme disease.”

But Kelly Kulesz never had the most obvious sign — a tick bite followed by a bull’s-eye rash — which occurs in 64 percent of diagnosed cases. If she had, it would have been a clear case of Lyme disease and treated with one month of antibiotics.

Instead, it went undiagnosed for four years. Jayme Kulesz says her daughter has what some doctors call chronic Lyme, in which the symptoms continue for months or longer.

“For years you try and figure out what is wrong with you or what is wrong with our child and when you finally have a diagnosis it’s Lyme disease it’s, ‘Oh boy there’s a diagnosis now we can get it treated and get this over with and she can get well.’ Well it doesn’t work like that.”

Kelly Kulesz, now 20 years old, is still not well enough to attend college. Her mother also got Lyme disease and, after seven months of antibiotics, still has lingering symptoms.

About 2,500 cases were confirmed with Lyme disease last year, according to Department of Public Health statistics. But the Centers for Disease Control and Prevention estimates only 10 percent of cases are recorded. Doctors and patient support groups in the state say this year they are seeing more Lyme in areas of Massachusetts that previously have not seen many cases.

“This is a public health crisis,” said state Rep. David Linsky, whose son was diagnosed with Lyme. Linsky’s sponsored a bill that sets up a commission to study Lyme, including the chronic version. “There are thousands and thousands of people in Massachusetts affected every day by a debilitating disease, Lyme disease. We believe to be growing in incidents and we need to get a handle on this.”

Linsky says one thing the medical community needs to agree on is whether “chronic Lyme” even exists. The Infectious Diseases Society of America says it doesn’t. It recommends antibiotics for about a month but no longer, even if the patient doesn’t feel better.

IDSA member Dr. Mark Pasternack, of Massachusetts General Hospital, acknowledges about 10 to 15 percent of patients don’t improve after one month’s treatment. But Pasternack says that doesn’t prove they have chronic Lyme.

“I certainly see patients who come in feeling terrible after a bout of Lyme disease but I see the same sort of thing in people who have had infectious mononucleosis or other systemic infections, so I’m not convinced that there’s really clear-cut chronic Lyme disease,” Pasternack said.

In Massachusetts, doctors who defy the IDSA guidelines and treat Lyme with IV antibiotics are sometimes reprimanded before the medical board. The climate for so-called “Lyme friendly” doctors became so bad that last year the Legislature passed the Physicians Protection Act specifically for doctors treating the long-term symptoms of Lyme.

That legislation will help doctors such as Sam Donta. He treats a lot of long-term Lyme cases on Cape Cod — often with multi-month IV antibiotics.

For the complete article:

~ by Rob on August 21, 2011.

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