Coping with Lyme Disease is nightmare for some Mainers

MaineToday.com - Portland,ME,USA
VASSALBORO -- Linda Anderson sits with her right leg propped on a stool, her swollen knee one of the signs of a disease she's dealt with for months.

An otherwise healthy 47-year-old, Anderson nearly lost her house this spring because Lyme disease made it impossible for her to continue working as a certified nurse assistant. With the help of family and friends, Anderson was able to keep the bank from taking her beautiful home in the Vassalboro woods.

But it could still be some time before she can return to a job she loves, but one that keeps her on her feet eight hours a day.

"I can't be on my feet for more than 20 minutes tops," she said.

In some ways, Anderson is lucky. Although she believes the tick that made her ill probably bit her last fall, she was able to get a diagnosis fairly quickly this past spring.

For some who were infected years ago, diagnoses took years -- precious time wasted on false starts and treatments that did nothing to stop the disease from spreading.

Experts believe Lyme disease has been around since the 1800s but was not identified until the 1970s, when a group of housewives from Connecticut demanded to know why many of the children in their neighborhood were diagnosed with rheumatoid arthritis, said Dr. Beatrice Szantyr, an internist and pediatrician who lectures in Maine on the illness.

For years, people in Maine were told the disease hadn't made its way this far north.

But it's here now, and Szantyr and those with the illness say not enough people understand what it can do.

Emmy award-winning musician and director Bill Chinnock calls it an epidemic in Maine, citing several people in his Yarmouth neighborhood -- including him and his wife -- who have Lyme.

He believes there are far more than 200 new cases each year in Maine, despite information from the state Bureau of Health.

But Szantyr hesitates to use the word "epidemic." Although she believes it's underreported by doctors, she does not want to alarm the public by using such a highly-charged word.

And the state's top doctor, Dr. Dora Mills, director of the Bureau of Health, said although the number of cases has grown since the disease first made its way to Maine in the mid-1990s, it's not an epidemic.

"An epidemic is an unusual and or unexpected rise in the incidence of a disease," she said. "I would not characterize Lyme disease as an epidemic."

As an emerging disease, doctors in Maine and elsewhere are still learning about how to spot it and treat it, she said.

The common belief about Lyme is that if you have it, you'll see a "bull's-eye" rash around the site where the tick bit you.

But that's not always the case.

LINDA'S STORY

Linda Anderson never saw the telltale bull's-eye. Only about half the people who develop Lyme do.

If she had seen it, Anderson said she would have known sooner that she needed treatment for Lyme.

She believes she was probably infected last fall while playing golf or doing yard work. It began to be a serious problem this spring, when it became difficult, then impossible, for her to work.

Once she got the diagnosis, she first started with a four-week course of antibiotics, then had a port attached to her chest that administered IV antibiotics for another 28 days.

After that, she went to see a Portland specialist, who then referred her to an arthritis specialist.

"He said you've got Lyme arthritis," she said. "This has been going on for months."

In addition to her knee problems, her neck was swollen and her right ankle is still larger than normal.

She hasn't been to work since March 19.

When she started to worry about making her house payment, she asked around to see if there were any social service programs that could help her out of a jam. She wasn't looking for a handout. She would pay the money back. She just needed some help to get her out of a temporary bind.

"I went to Human Services," she said. "It was the most degrading thing I've ever done in my life."

When she could find no government help, her family chipped in to pay the electric company and her mortgage so she could stay in her home.

She now covers herself with a product containing the insect repellent DEET when she goes outside.

TICK TALK

In the not too distant future, Szantyr hopes protecting against Lyme disease will be as common as buckling a seat belt or putting on a life jacket in a boat.

After all, it is a preventable disease if people cover up when they are outside, apply a bug repellent with at least 23 percent DEET, and check themselves for ticks at least once a day, she said.

Szantyr, of Lincoln, spends much of her time traveling the state and country lecturing about Lyme, letting people know that it's a certain tick -- the deer tick, which is the size of a poppy seed -- that carries the potentially debilitating disease.

For doctors, it can be difficult to diagnose Lyme, she said.

It doesn't show the same symptoms in every person and the tests developed to detect it aren't sensitive enough to pick it up in every patient.

"The lab can't make or break any diagnosis," she said. "We doctors do like it when the lab can give us the answer."

In Maine, the ticks that carry Lyme are most prevalent along the southern coast, but it is moving north along the rivers, Mills said. There have been cases reported in every county in Maine, although Mills said it's important to remember that people travel, too, and some may have picked it up elsewhere.

Mills is especially careful about checking her children at bath time, saying she once found a tick on her 3-year-old after he had been playing in a pile of leaves.

She said keeping grass cut short, moving wood piles away from areas where children play, and not piling up leaves are easy tips to reduce the chance children will be exposed.

"People should feel at ease to go outside and play, but a couple of quick precautions can reduce the incidence of Lyme disease," she said.

While new cases spotted early are easier to treat, some people got the disease before it was known to be a problem in Maine.

LUCINDA'S STORY

Lucinda Gidney, 48, of Albion, has been struggling with Lyme ever since, 11 years ago, "I had the worst flu I had of my life," she said.

At the time, she was working three jobs. She, too, did not see a rash.

She had been camping that year, but wonders if she was bitten by a tick in her back yard.

She had trouble concentrating and had vertigo. It was hard to get in and out of a car. Her legs were weak and her throat was sore for a year.

She had an irregular heartbeat and chest pain, and was extremely tired.

Her last day of work was Sept. 14, 1994.

At various points, with various doctors, she was told she might have fibromyalgia, multiple sclerosis or chronic fatigue syndrome, or that she was mentally ill.

"I really thought I was dying and nobody could tell me why," she said.

After seven years of searching for a diagnosis, three people in one week told her to get tested for Lyme. The first test came back negative.

She found a doctor in New York state, a Lyme specialist, who found she had what's known as a co-infection that had become entrenched after seven years without treatment.

She takes nearly 50 pills a day, which include two antibiotics, a heart medicine and several herbal remedies.

Her husband, Alan, also has it.

Gidney helps run a support group at Inland Hospital in Waterville, where about a dozen people come each month for help.

"I haven't read a book in years because of the effort it takes to read and remember," she said. "I was a voracious reader before that."

BILL'S STORY

Bill Chinnock and his wife, Terry, also have struggled with Lyme for years, spending three years on the IV antibiotics. Chinnock, known to many in Maine as a blues guitarist, said they both were disabled by the disease.

"There's a dropper full of doctors in Maine who understand the disease," he said. "I saw every doctor in Maine for a year before I was diagnosed out of state."

He's able to work now and wants to alert families that they can take precautions to prevent Lyme, such as covering up when going outside and using DEET to keep the ticks at bay.

"This initiative needs to not be a fledgling attempt to wave a small flag," he said. "There needs to be an educational campaign for the general population."