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Sunday, January 08, 2006

Her agony had a name: Lyme disease

The Free Lance-Star - Fredericksburg,VA,USA
By BETSY CRUMB

In the early fall of 1999, a small deer tick feasted on Frances Bishopp's upper thigh. Writing it off as nothing more than a spider bite, Bishopp didn't get alarmed by the red bull's-eye rash that developed.

But over the next two years, the 62-year-old Fredericksburg resident experienced much more than just a rash.

"I began to develop Lyme [disease] symptoms, though at the time I didn't know that's what they were," Bishopp said. "First, my eyes were glued shut with conjunctivitis; I thought it was allergies. Then I became very, very tired, to the point of fatigue; I thought it was my job."

Next came chronic lower back pain. And when Bishopp started putting in 17-hour days commuting to Washington by train, she began to experience dizziness.

She said she felt like she was "bouncing off the walls when I walked; it was terrible vertigo."

Her weekends meant time in bed, and eventually she had to leave her job.

No one seemed to understand.

"She's such a high energy person," said one of her two daughters, Cameron Bishopp. "To see her feeling so sick that she couldn't get out of bed was such an amazing thing for her to go through."

Two years, six diagnoses, and an array of doctors later, Bishopp was finally diagnosed with Lyme disease.

"I went to every doctor in this town, I swear," Bishopp said. "I went to a [general practitioner], a neurologist, allergists, orthopods. I had a [CT] scan. I was diagnosed with epilepsy, fibromyalgia, generalized anxiety disorder, extreme fatigue. I was crazy because I couldn't get well. I thought I had lost my mind."

After six weeks of visiting a holistic doctor, the results of her Lyme disease test came back positive.

In September of 2002, Bishopp began antibiotics treatment. But the treatment didn't cure her. Her weekends in bed turned into weeks. And for two years after the diagnosis, Bishopp said she left her bed only to go to the emergency room or for her treatment.

Her search for a cure sent her to specialists in North Carolina, where she was treated with different antibiotics for five months.

Now, more than five years after her encounter with the tick, Bishopp is much better, but still recovering.

Her trip to the North Carolina specialist, she said, "was the beginning of my education of my horrible disease."

"The frightening thing about it is so many people don't know they have it," Bishopp said.
'A hideous disease'

Lyme disease was first discovered in Lyme, Conn., in 1981 after a group of children were all diagnosed with rheumatoid arthritis. Thinking this was an odd diagnosis for children, Dr. Willy Burgdorfer began to investigate.

He discovered the children were actually suffering from a spirochete bacteria, infested in them by black-legged ticks. The disease became known as Lyme.

Lyme disease is usually characterized by a bull's-eye rash, such as the one Bishopp had. It's known as the erythema migrans, and along with it, sufferers also often experience flulike symptoms at first.

The rash appears as the body's way of attacking the foreign bacteria. But when the rash disappears, it may not mean the disease is gone.

"Lyme disease is a hideous disease that can affect any organ in your body," said Lucy Barnes, an employee of Lyme Disease Education and Support Diseases of Maryland.

The reason Lyme can go undetected and undiagnosed for so long is because the bacteria, undeterred by the rash, can hide inside cells. This can keep the immune system from detecting and attacking the disease.

According to the Centers for Disease Control, 19,804 cases of Lyme disease were reported in 2004. However, for every one case of Lyme disease reported, 10 go missed, the CDC estimates.

The disease can impair the brain, the nervous system and the heart, as well as cause chronic arthritis, hepatitis, and extreme fatigue, according to the National Institute of Allergies and Infectious Diseases.

The Lyme Disease Association notes that if caught early enough, before the bacteria spreads inside the cells, Lyme disease can be treated and people can recover quickly. But if undiagnosed, such as in the case with Bishopp, it can cause lifelong health problems.

Both Bishopp and Barnes recommend that patients who suspect they have been infected by a tick insist on being tested and treated immediately.

"Back in the '80s, before people really knew about it much, doctors said it was a virus and no treatment was necessary or available," Barnes said. "They found out later that they were completely wrong."

Unfortunately for Barnes, they found this out too late. She said she was finally diagnosed when she staged a sit-in at her doctor's office, refusing to leave until she was tested for Lyme disease.

Barnes, who is known as Tin Cup in her "After the Bite" chat rooms and other intimate Lyme disease circles, was bitten by a tick when she worked as a park ranger in Virginia state parks. Her bout with the disease has left her legally blind and permanently disabled, she said. Since being treated, she said she has learned to walk again, talk again and get out of bed for the first time in years.

And now Barnes is taking an advocacy role, working to educate doctors and victims of the disease. She met Bishopp a few years ago, when Bishopp went online looking for answers.

"She was pretty much a basketcase when she got online. Most people are because they are so desperate for answers," Barnes said in a phone interview.

Barnes said for people in Bishopp's position, it's important to go back out into the world, but it's very difficult.

"She's got a long road to go still," Barnes said of Bishopp, "but she's starting to function again and she's able to enjoy some life for a change. She has come a long way from where she was. I can hear laughter in her voice, a smile that was never there."
Debate over treatment

Barnes' organization is just one of a number attempting to better unravel the mysteries of Lyme disease.

Because symptoms of Lyme disease are similar to many other diseases, doctors have a hard time diagnosing it. The only identifying characteristic of Lyme disease, the bull's-eye rash, is absent in one-fourth of all patients, making it even more difficult to find.

Lyme disease is also hard to detect because symptoms come and go, and oftentimes doctors and patients do not connect them with one another.

This similarity to other diseases and lack of consistent symptoms has led to much dissension in the medical world.

Dr. Geoffrey Gubb, a physician from Parksley, Va., who has done significant research in the area of Lyme disease, said both patients and doctors are missing diagnoses.

"There is this huge difference of opinion between the people who are treating a lot of Lyme and those who are in the infectious disease societies," Gubb said.

Doctors disagree over how to properly test for the disease, as well as diagnose it.

According to the Serodiagnosis of Lyme Disease, a paper written for the CDC, "The diagnosis of Lyme disease is based principally on clinical manifestations and history of exposure to vector ticks in an area where Lyme disease is endemic."

However, Gubb and some other Lyme doctors disagree with this. He said "clinical manifestation" implies physical symptoms, and those are hard to pinpoint, and often inconsistent from one patient to the next.

Aside from the medical quarreling, Gubb said he thinks the biggest problem connected to Lyme disease is the growing population of deer.

"We have to get serious about killing ticks, eradicating them," he said.

While the peak time to contract Lyme disease is in the spring and summer, Barnes noted that it is important to remember that ticks can live in winter weather conditions as well.

"With 80 percent snow cover, ticks can be active," Barnes said. "So hunters especially, and park rangers, are at high risk."
'I couldn't really understand'

Bishopp still has a long way to go on her road to recovery. But her future looks hopeful.

"I was just home for Thanksgiving," said Cameron Bishopp, her daughter. "She was up, and she was a different woman. To be able to see her up and moving around for the first time in years, I can't even tell you how thankful we are."

Bishopp said she is very grateful for her strong support system of family and friends.

She's become determined to help others with Lyme disease avoid the kind of suffering she's experienced. And she's grown more confident in herself.

"I intend to beat it, because I'm a fighter," she said.

To overcome Lyme disease, patients must be very proactive about their health care and aggressively seek the proper diagnosis, Bishopp's daughter Cameron said.

"My mother did so much research and became so educated on it, and that was so important," Cameron Bishopp said. "I always felt bad because I couldn't really understand. I never could fathom how this feels."

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