Lyme disease Debilitating effects, difficulty of diagnosis detailed at hearing

Harvard Hillside - Harvard,MA,USA
AREA -- State Rep. Peter Koutoujian and the Joint Committee on Public Health held a public hearing on Lyme disease to gather testimony on a disease that infected roughly 1,500 Massachusetts residents last year alone.

The hearing was held at Nashoba Valley Medical Center.

"We are well into the Lyme disease season," said Koutoujian, D-Waltham. "Outdoor activity is extremely high this time of year, making much of the public susceptible to becoming infected."

The panel included Patricia Smith, president of the New Jersey Lyme Disease Association; John Coughlan, director of the Lyme Disease Coalition; Heather Marceau, member of the Acton Board of Health; Koutoujian; state Rep. Jennifer Flanagan, D-Leominster; Maureen O'Brien, registered nurse; Dr. Sheila Statlender, a registered psychologist and a member of the Lyme Disease Association of Massachusetts; and state Sen. Pamela Resor, D-Acton.

Lyme disease is caused by bacteria that are spread by infected ticks, in the commonwelath it's the deer tick.

In Massachusetts, deer ticks are found everywhere, and the most prevalent time for infection is between late May and early autumn, which is when ticks are most active. Deer ticks cling to plants near the ground in brushy, wooded or grassy areas. The ticks, which cannot jump or fly, climb onto animals and people who brush against the plants.

One group of women came up from the Cape Cod support group of Lyme disease sufferers.

Jacquelyn Nesbitt, Karen Hullett-LaRoche, Sharon Mendes and Susan Soares all have first-hand knowledge of how debilitating the disease can be.

Nesbitt has chronic Lyme disease and spent two years bedridden from the effects. "I am in extreme pain every day," she said. She had been misdiagnosed for five years before a doctor found she suffered from Lyme disease.

Hullett-LaRoche has had the disease since she was approximately 10 years old.

"The doctors never could find what was wrong with me," she said. "They sent me to various other specialists, even psychiatrists. They thought since I had no rashes, which is a symptom of Lyme, that it was fibromyalgia."

"Another doctor told me that I could not even meet my husband's needs, and maybe we should look at getting a divorce, so he could get on with his life," she added.

She said she was near death by the time of her diagnosis. "I went into complete physical and mental collapse," she said. "I always feel like I am swimming upstream, that is how bad the tired gets."

"One thing Lyme does is it can make you forget how to do ordinary things, like walk up or down stairs," she continued. "I've been living like this almost my whole life."

Other difficulties she encountered included not remembering how to write a check.

"I was totally bedridden for eight weeks," she said.

Hullett-LaRoche said she is now on total disability from the state because she can't function.

She passed the disease on to her now grown children through the umbilical cord, she said.

Mendes has had Lyme for 25 years, and is now in an advanced chronic stage. "I was diagnosed three years ago," she said. "My husband has a mild case now as well."

She said one symptom is panic attacks. "You feel like you are going crazy," she said. "All of your coping skills leave you, and it is like you have to learn to live all over again."

Mendes told the panel she was always "an overachiever as a child, and was never a hypochondriac."

"It is very scary when you are ill -- physically and emotionally -- and no one knows why," she said. "Today, I cannot even drive a car."

Soares, who is the designated driver for the group, said her 20-year-old son has Lyme. "He was misdiagnosed for years," she said. "He was so bad that during this past school year, he had to spend two entire weeks in bed, could not even attend his classes."

Lyme disease affects children a little differently than it does adults, according to Mendes. "Many children are misdiagnosed with Attention Deficit Disorder when in reality, they are suffering from Lyme disease," she said.

Koutoujian said to date there are 244 confirmed cases of Lyme disease in Middlesex County, which is a 94 percent increase since 2000. He also said Massachusetts is three times higher in confirmed numbers since 2003.

"Unfortunately there is no vaccine available for this," he said. "Lyme disease is more problematic than we thought, and people around us are being infected every day."

Smith said people who are in grassy areas should check themselves every day.

"Look between your toes, in your groin and on your hairline," she said. She explained the rash looks like a bull's eye.

"In New Jersey, we have finally adopted a state curriculum from Lyme disease in the schools," she added.

William Alton, of Pepperell, spoke to the committee on behalf of himself and his wife, who also suffers from Lyme.

"We have both seen various specialists," he said. "My wife can no longer even speak from the disease. We have both heard from so many other people that have Lyme disease in our area."

Alton said he and his wife have searched for a specialist in the field of Lyme disease, and that they are considering to go out of state.

"One thing we have discovered is total ignorance by doctors on Lyme," he said. "I went on the Internet and found only two Massachusetts doctors that are specialists in the disease."

He said his wife also suffers from breast cancer, which makes the Lyme that much more difficult to deal with.

In the early stages of Lyme disease it can be treated with antibiotics. However, if left untreated, it can spread to the three major organs, the joints, the nervous system and the heart can all be affected. It can be fairly easy to diagnose when the classic rash is a symptom, however most who testified said they did not have a rash.

Koutoujian said all information compiled will be used to get more information out to physicians.

"This hearing will serve as a valuable tool in helping us better understand Lyme disease," he said.