Lyme disease victims to testify at Statehouse

Salem News - MA, USA
Hard to get, easy to diagnose, easy to cure. That's one school of thought on Lyme disease.

Those who have suffered infections that went undiagnosed for years have a different take on it.

"We say it's easy to get, hard to diagnose and hard to cure," said Wenham's Kay Lyon, whose family of four all suffer lingering effects of the disease.

Lyon is one of about 40 local people affected by the disease traveling to the Statehouse tomorrow morning to testify before the Joint Committee on Public Health. It's the third and final in a series of hearings called by state Rep. Brad Hill, R-Ipswich.

Hill said information gleaned from the hearings will be used to recommend legislation aimed at getting better and faster diagnoses of infection, among other things.

"The tests currently used don't always pick it up the first time," Hill said. "We might recommend more money for our state labs for better testing."

Some also see the hearings as an overdue wake-up call.

"There is a sense the Department of Public Health is not addressing it (Lyme disease) as feverishly as we would like them to," Hill said.

Lyon would likely call that an understatement.

The bacterium that causes Lyme disease, Borrelia burgdorferi, is transmitted to humans by deer ticks. Lyon believes she was infected in 1975, when she was working at an animal shelter in Boston.

She had what would now be called classic symptoms of Lyme disease: a rash where she was bitten by the tick, fever, joint pain.

"But no one knew about the disease then," Lyon, 49, said.

Some doctors and many patients believe Lyme disease can also cause psychoses and depression, and Lyon said she fought suicidal thoughts throughout her 20s.

When her daughter, Meredith, was 9, she also began exhibiting typical signs of Lyme disease infection. Although no doctor could make an accurate diagnosis at the time, Lyon was told Meredith would not live. The girl missed all of the third and fourth grade because she was delusional and suicidal.

Lyon became convinced Lyme disease was at the root of the problem, and when she heard about a doctor in New Haven, Conn., who was successfully treating children with the disease, she made an appointment.

That doctor eventually prescribed a regimen of antibiotics that brought the disease under control. Lyon said her daughter is now a normal 16-year-old, though she continues to take antibiotics.

"She's doing great," Lyon said. "She's on the swim team and once in awhile she even makes the honor roll."

Lyon believes she passed the disease to her daughter and her son during pregnancy - a view that isn't widely shared in the medical community - but she's used to being told she's wrong.

She's not sure what will come out of this week's hearing.

"You're talking to a cynic," she said, but admitted she's more optimistic than she was a year ago and thinks public attention will have at least one benefit.

"The medical community is not coming around, but hearings like this get the media involved, and that makes patients feel empowered to demand treatment," she said.