no-time-for-lyme

[url="http://www.usatoday.com/news/healthscience/health/2001-05-31-lyme-symptoms.htm"]http://www.usatoday.com/news/healthscience/health/2001-05-31-lyme-symptoms.htm[/url]

05/31/2001 - Updated 10:46 AM ET

Symptom mix may or may not point to Lyme disease

By Anita Manning, USA TODAY

Two years ago, Lori Levesque of Embreeville, Pa., was suffering from an array of seemingly unrelated symptoms that baffled her doctors: pain on her right side, weakness, hair loss, blurred vision and chest pain.

"I had about eight specialists looking at me and had gone through three different family practices in the area," she says. "I had CT scans, ultrasounds, X-rays — and nothing was being found."

Worst of all, her children, Ryan, 12, Cara, 10, and Ailee, 7, started showing symptoms. "Ryan would come home from school and sit on the bed and stare. Cara would sit on the floor and say, 'I don't feel good.' My baby was a temper tantrum waiting to happen. We were all becoming so ill."

A friend suggested they might be suffering from Lyme disease, a tick-borne illness that is common in rural Pennsylvania where the Levesques operate a campground. But, Levesque says, she had been tested three times for Lyme disease, and all were negative.

Her illness progressed. One day, as she walked from her home to the campground, "I turned into a farm area and basically had a breakdown. I didn't know where I was or how to get home."

Her alarmed husband, Gary, sought out yet another doctor, who listened to her litany of ills and "after a 20-minute conversation, he said, 'Mrs. Levesque, you have Lyme disease.'

"He came back with a paper and read a list of symptoms. I had 90% of them," she says. "No one ever put it together that they were all part of a systemic illness."

Lyme disease is caused by a corkscrew-shaped bacterium called a spirochete, which is transmitted by the bite of tiny deer ticks or, on the West Coast, by the western black-legged tick. The ticks feed mainly on white-footed mice and white-tailed deer, along with birds and other mammals. As the deer population has grown and expanded its range, the range of Lyme disease has also expanded, though the risk still is highest in the Northeast and Upper Midwest.

It was first identified in Lyme, Conn., in the mid-1970s in children who were suffering arthritis — one of the most common symptoms — and has since become the most commonly reported tick-borne disease in the USA, according to the Centers for Disease Control and Prevention. The true incidence is probably much higher, scientists say, because in some parts of the country doctors see so many cases that they often don't bother to report them to the CDC. The Lyme disease season begins in late May, when the ticks are in the nymphal stage. Nymphs account for nearly 90% of infections, although adult ticks also transmit the disease. Adult ticks are active from October through June in warmer areas.

Making matters worse, says pediatrician Peter Krause of the University of Connecticut School of Medicine, is that some patients have more than one tick-borne infection. In one study, he says, about 10% of patients with Lyme disease also had babesiosis, a parasitic disease of the red blood cells, and the same may be true for ehrlichiosis, a disease discovered in 1987 caused by a bacterial parasite of white blood cells. Both are carried by the deer tick.

Yale University researcher Durland Fish recently discovered yet another organism carried by the deer tick, a bacterium similar to the one that causes Lyme, but it's not yet clear whether it causes illness.

Levesque was diagnosed not only with Lyme disease but with ehrlichiosis and babesiosis. She also had human parvovirus, a common childhood infection.

The children were tested and found also to be infected with Lyme, babesiosis and ehrlichiosis. Ryan also had Rocky Mountain spotted fever, a disease transmitted by dog ticks. Then, husband Gary had a cardiogram that showed he needed a pacemaker to regulate his heartbeat. His blood tests turned out to be positive for Lyme, ehrlichiosis and babesiosis. "He had no other symptoms," says his wife. "He probably would never have been diagnosed. He just would have had a heart attack."

Today, after months of antibiotic treatment, all are recovering, she says.

Diagnosing Lyme disease can be tricky, scientists say. The ticks are very small, about the size of a poppy seed in the nymphal stage, and can latch on, feed and fall off without detection. Once infected, many people develop a characteristic bull's-eye rash that is a sure sign of Lyme disease, but often there is no rash, or it erupts on the scalp or elsewhere out of sight. In such cases, the illness can go undetected only to emerge months, even years, later.

Doctors usually make diagnoses based on symptoms and a history of exposure to ticks, followed up by blood tests to detect an immune system response. But the tests are not always reliable, sometimes producing false-negatives, especially early in the infection before the immune response develops.

The wide range of symptoms also can lead to misdiagnoses, says Pat Smith, president of the Lyme Disease Association (www.*******.org). In some people, she says, the infection can manifest itself only in brain and central nervous system impairments, ranging from memory disturbance to seizures. Depression, bipolar disorder and tremors are other symptoms, she says, along with disturbances in thought processes. "People call it Lyme fog," she says.

In such cases, says Smith, only a "very competent Lyme-literate physician" is likely to pinpoint Lyme disease as a cause. The Lyme Disease Association is working with Columbia University to open an endowed research center for study of Lyme and other tick-borne diseases, she says. The association is also part of a coalition of Lyme disease groups backing legislation introduced in March by U.S. Rep. Christopher Smith, R-N.J., that would provide $125 million for Lyme research and physician education. A report from the General Accounting Office assessing Lyme disease research and funding is expected to be completed soon.

Levesque says more research is needed to investigate connections between Lyme disease and other ailments. "In my community, we have people with lupus, multiple sclerosis, Guillain-Barre syndrome," she says. "They're getting tested for Lyme and coming up positive. Why not look at the possibility these organisms could be the cause of those diseases?"

David Dennis, a Lyme expert at the CDC's laboratory in Fort Collins, Colo., agrees with the need for more research. Without clinical evidence, he warns, some patients may latch onto a Lyme disease diagnosis out of a need for an explanation for what is causing them discomfort, not because there's good evidence of infection. "If we leave it open that Lyme disease can cause anything," he says, "we give these people false hope and we divert our normal diagnostic pathways, so we may miss another (disease) that can be treated and cured."

While questions remain about Lyme disease, Dennis says, a great deal has been learned about it.

"We've been studying this disease long enough under controlled conditions that we know it has a very wide range of manifestations, but we can logically categorize these symptoms of disease based on the stage of infection," he says. "If we blow it out and say this disease can cause anything without actual clinical studies, we're straying off into never-never land."