Editor’s note, Aug. 9:
Listeners and readers of this story might conclude that the medical establishment is evenly split between those who support a diagnosis of “chronic Lyme Disease” and those who do not. In fact, there is a strong consensus against that diagnosis as an explanation for the long-lasting symptoms some patients experience, and against long-term antibiotics as treatment. The issue remains hotly debated publicly, and WBUR’s health blog, CommonHealth, plans to follow it in the coming months.
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."
Children who go undiagnosed and untreated for a while could face a lifetime of health problems, all because of a tick bite.
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.
"Some so-called experts don’t want to get into this problem because there currently isn’t a test for it," he said. "So it's like, you mean anybody can have Lyme disease who has fatigue or fibromyalgia symptoms for a number of months, and the unfortunate answer in that regard is maybe they do."
But the legislation still won’t solve the other problem patients face, Linsky says, especially getting insurance to cover long-term care.
"The insurance companies are denying coverage for those people who are receiving the long-term antibiotic treatment and if they are not denying coverage they are making it very, very difficult for the payments to be made and sometimes the patients and their families kind of give up on it," Linsky said.
Linsky is trying to get another bill through the House that would make insurance companies fully cover chronic Lyme. Most health plans pay for oral antibiotics for longer than one month but not IV therapy. It can leave families with large bills, Linksy says, because children have among the highest rates of infection. One of them is Linsky's 17-year-old son, who he says has chronic Lyme.
"It took a while to get caught and quite frankly he has not totally recovered. He was a great high school athlete, he’s lost a lot of weight, he’s had all types of problems. He missed a whole semester of school," Linsky said.
Children, like Linsky’s son, who go undiagnosed and untreated for a while could face a lifetime of health problems, all because of a tick bite.
This program aired on August 8, 2011.