Living with Lyme disease Debilitating infection taking hold in Vermont

Times Argus - Vermont
Bernadette Rose used to swim before work. After work, she'd kayak, have dinner, grocery shop and then tackle laundry. Today it's rare that the Barre woman makes it through the day without a nap.

Michael Pockette could play seven games of softball in a single day. Today, a game on his Proctor lawn with his 5-year-old daughter is about all he can muster. But he's lucky. Unlike Rose, he's been able to return to work.

Paula Sagerman works part time at her Wilmington home. She used to hike. Today, she can't walk uphill without exhausting herself.

Each has Lyme disease, or a Lyme-like disease, a debilitating, sometimes chronic illness spread by deer ticks that can devastate lives and bank accounts and is far more prevalent in the state than even some medical doctors believe, according those with the disease and the Vermont Department of Health.

That lack of awareness in the Vermont medical community leaves the illness arguably under-diagnosed or misdiagnosed, and consequently patients are going to out-of-state doctors who are able, or willing, to diagnose the disease, which commonly causes arthritis-like joint pain, muscle aches, extreme fatigue and memory problems.

Pockette experienced all of those symptoms. He'd forget where he was driving or what he was retrieving from across the room at his job as a machinist at General Electric. He was taking time off because of fatigue, was about to lose his job because he had used up all of his sick and vacation days, had slipped into debt because of lost income and was becoming increasingly weak and overwhelmed by pain.

"My doctor's office thought it was all in my head. 'It's stress,'" he said he was told. "I was seeing a psychologist and was on antidepressants."

More than four years went by before Pockette's mother-in-law convinced him to seek help from a New York doctor, who finally diagnosed his health problem as Lyme disease.

Sagerman was also diagnosed by a New York doctor, and Rose found help in West Lebanon, N.H., after years of illness.

"I was so excited to find out I was sick, and it had a name, because by then I was having difficulty walking. I was having difficulty using the stairs," says Rose. She had to write herself notes to remember what she was doing or where she was driving. Rose says she is still plagued by the illness because she went without a diagnosis for so long.

The Department of Health is now engaged in a campaign to educate the public and medical community about Lyme disease and its prevalence in Vermont.

The disease was discovered in the 1970s in Lyme, Conn., where children were suffering arthritis-type symptoms. It is spread by infected deer ticks, also called black-legged ticks or Ixodes scapularis, which are active from May to October. Those ticks are now known to be in Vermont.

"We have the right tick vectors here … and in fact we have Lyme disease here in both the northern part of the state and the southern part of the state," Department of Health epidemiologist Patsy Tassler says.

Last fall, the state collected ticks from two Vermont locations – a Lake Champlain island site in northwestern Vermont and three sites in the Manchester area – by dragging corduroy material over foliage and along trails. The harvested ticks were sent to a lab in Maine for testing.

Of 69 ticks collected and tested from Butler Island, 34 of them, or 49 percent, tested positive for Lyme disease, Tassler says. "We think that the situation on (all) the islands is the probably the same, or similar," she adds. "That's higher than I think we expected and I think most people would expect." The state has met with camp owners and town officials from Butler Island about the test results.

Of three sites in Bennington County, one had no ticks that tested positive for Lyme disease, at the second, about 9 percent were positive and at the third, nearly 21 percent tested positive for the disease.

An Agency of Agriculture lab in Waterbury will begin testing ticks this year.

"We've been collecting them. Once we have enough, we'll test them," says Agency of Agriculture entomologist Jon Turmel.

The testing is needed, he says, "because we're seeing more and more ticks, we're seeing more Lyme disease, especially in dogs, and to educate people that Lyme disease is out there. Even the physicians don't believe there's Lyme disease.

Tassler agrees. "Lyme disease is definitely in Vermont. Vermonters can get it here," she says.

The state can't accurately say how many more ticks are in Vermont. Veterinarians two years ago announced larger numbers of dogs testing positive for the disease as ticks adjust to Vermont's climate and their numbers increase.

Caledonia and Essex county forester Stephen Slayton has worked for the state for 34 years. Slayton recalls seeing ticks on rabbits he hunted as a child in 1957. "(That was) the last time I saw ticks until just recently. They're something new."

Slayton, based in St. Johnsbury, says he has started seeing ticks over the last three to five years, particularly in Lunenburg, Guildhall, Concord, Wheelock and Groton. He says checking himself for the insects after leaving the woods has become part of the job.

The first 30 deer brought to each of the state's 18 check-in stations during hunting season are checked for ticks and veterinarians send them in to the state be identified, says Trish Hanson, forest protection entomologist for the Vermont Department of Forests, Parks and Recreation. The state has eight common tick species, including deer ticks, woodchuck ticks, American dog ticks, brown dog ticks and lone star ticks.

"The percentage of deer which have them has gone up a little bit. It's not a really scientific study," says Hanson, noting tick collections from the deer aren't an accurate reflection of the number of ticks in Vermont because some people are better at finding ticks on the deer than others.

Human cases of Lyme disease leapt from 16 cases (14 contracted outside of Vermont and two within) in 1994 to 50 (28 contracted outside the state and 22 within) 10 years later in 2004. The 2004 results are still preliminary. Physicians and labs are required to report Lyme diseases cases to the state. Tassler says the numbers are likely up both because of increased tick numbers and higher awareness, but likely do not reflect the real number of people carrying the disease.

"Lyme disease may be under-diagnosed in Vermont," she says.

If diagnosed early, antibiotics can usually cure the disease. Left undiagnosed, long-term antibiotic therapy is needed.

Pockette says he thinks he contracted Lyme disease in 1999 on a new softball field built on a former deeryard in Orwell.

"After the playoffs, my wife noticed a bruise on my back. I don't bruise that easily," says Pockette, who now believes the "bruise" was a bite mark.

The following spring when Pockette donned his softball glove again, he found himself tired and barely able to get through a game. The next year, a half of a game was all Pockette could play. The third year, "I just retired from softball," says the 44-year-old who was once in great shape. "Some days I wasn't able to go to work. There were a few times I actually collapsed at work."

He was as forgetful as he was weak. "I could literally read the paper three times in a day and it'd be a new paper to me," says Pockette. He spent six months completely out of work on antibiotics and building back his strength after being diagnosed.

Sagerman researched the disease on the Internet and eventually found her way to an online support group for Vermont Lyme diseases sufferers (available through www.vermontlyme.org) and asked site members for a doctor's name who could help her. Those with Lyme call doctors who understand the disease "LLMDs," or "Lyme-literate doctors."

Rose got so she couldn't sleep at night and was exhausted during the day. "I felt confused. I couldn't do things I used to be able to do," she says. "My life fell apart. All my relationships fell apart."

Her symptoms were attributed to depression, anxiety, overwork and even what she calls her eccentric nature, until she met Dr. Rex Carr, a physical medicine and rehabilitation specialist in New Hampshire.

"The level of controversy on this illness is huge," Carr says. "It can be a very serious illness. It can cause death. It's very unusual, but there are, indeed, people who get an acute infection and they die."

Marge Wells of Montpelier spent four years on antibiotics for Lyme disease before feeling "normal" again. "It has been one year without antibiotics and I have not felt this good in 20 years," says Wells, who says she was sick for years without a diagnosis.

Wells, who is deaf, now draws, gardens, kayaks, travels in her recreational vehicle and spends lots of time being a grandmother. If her symptoms return, however, she'll go back on antibiotics.

Pockette is also off antibiotics.

"I'm getting better. I'm not 100 percent by far. I'm always tired still. I can't do what I used to do." But, he says, "I can think again. I can retain information again."

Sagerman will take antibiotics – she now takes three – until after her symptoms stop.

"The one symptom that I can't seem to get rid of is this mild headache. It's this burning feeling behind my forehead," she says.

She's also weak, must leave housework to her understanding boyfriend, suffers some "brain fog," sometimes has trouble finding a word she's trying to say and is reduced to part-time hours as a historic preservation consultant.

"I'd say it's affected every aspect of my life. I can't work as much, I can't exercise, I can't go out at night because I'm too tired," she says.

"I have good days and I have bad days," Rose says. "Sometimes the good days stretch out."

Contact Robin Palmer at robin.palmer@timesargus.com or 479-0191, ext. 1171.