Shining a light on Lyme disease

Roanoke Times - Southwest Virginia
Four women in the Roanoke area talk about the struggles they've had with Lyme disease, including getting doctors to properly diagnose them.

If Amy Pace had not run into Julia Collins at the Roanoke Natural Foods Co-op one day earlier this year, it might have taken her much longer to figure out what was wrong with her.

For about two years, the former personal trainer had endured severe headaches, swollen glands and extreme fatigue.

"When you have two little kids, you expect to be tired," said Pace, who is 34 and lives in South Roanoke.

Then Pace started to run a fever and developed severe joint pain. She heard ringing in her ears, started slurring her words, and developed what she calls "brain fog."

Pace had consulted with six Roanoke Valley doctors about her illness. Only one had her tested for Lyme disease, and the test came back negative.

"I never considered that I had Lyme disease," Pace said.

But Collins, 44, knew about Lyme, because she'd also spent years trying to figure out what was wrong with her before she was diagnosed with the disease. She and Pace discussed their symptoms. Collins recommended Pace see her doctor in Maryland.

Like Collins and other people in a growing local word-of-mouth network, Pace has since been diagnosed with a chronic form of the illness. She, Collins, and two other Roanoke Valley women interviewed for this story -- Cindy Courtright and Kim Mackey -- say they have spent years and tens of thousands of dollars consulting doctors and getting medical tests before finally being diagnosed with the condition.

Between them, they were told they had a virus, or fibromyalgia, or chronic fatigue syndrome, or multiple sclerosis, that they might be depressed, or in Mackey's case, that it all could just be in her head.

Pace said she initially kept working with doctors' diagnoses but wasn't getting any better. She said she always felt there was something else underlying her symptoms.

What is striking about the women interviewed for this story is how much they have in common. They were all healthy young mothers who initially attributed their symptoms to recently having given birth or to post-partum fatigue.

Pace and Courtright, who is 40, were living in the Roanoke region when they were diagnosed; Collins, who now lives in South Roanoke, developed symptoms while living in Philadelphia. Mackey, 37, first started having medical problems when she lived in Connecticut.

Local concern about Lyme disease seems to be growing. Pace estimates that she's gotten calls about Lyme from at least 10 people who think they have it or who have already been diagnosed with it.

Lyme disease is the most common vector-borne infection in the United States, according to the U.S. Centers for Disease Control and Prevention. That means it is the most common infection from ticks or insects.

But there appears to be a disconnect between anecdotal evidence about the prevalence of Lyme cases and data from the Virginia Department of Health. And the diagnosis of Lyme already has caused some controversy and spurred the creation of an advocacy group in Northern Virginia.

According to data from the health department, just six cases of Lyme disease were reported in Southwest Virginia in 2003, the last year for which figures are available. A total of 195 cases were reported statewide that year.

Reported cases of Lyme disease have generally trended upward during the last decade, from 131 cases in 1994 to 195 cases in 2003, according to health department data.

Lex Gibson, an epidemiologist with the Roanoke and Alleghany health districts, pointed out that diseases are often under reported to the health department. He also pointed out that in the case of Lyme, sometimes only one test -- the ELISA test, short for enzyme-linked immuno assay -- is done. And he said it is not a very good test.

And the cases of people who were diagnosed with Lyme outside Virginia -- as were the women in this story -- were likely never reported to the Virginia Department of Health.

Dr. Kevin Kelleher, a family physician with Cave Spring Family Practice, said Lyme is still relatively rare in the Roanoke region. It originated in Connecticut and is common in the northeastern United States, but has been drifting into more areas, Kelleher said.

Lyme disease also can be difficult to diagnose for several reasons, Kelleher said. Fewer than 60 percent of people who are bitten by a tick and get Lyme disease actually develop the classic bull's-eye rash that is a common symptom of the disease, he said.

"What you're left with is someone with generalized flu symptoms, so that can fool us right off," Kelleher said.

The second problem with diagnosing Lyme disease is that very few people actually remember getting bitten by a tick, Kelleher said. And the third problem is that the testing for Lyme isn't highly specific, he said.

Right off the bat, the ELISA test misses 10 percent of the cases, Kelleher said. Another quarter of the cases register false positives, he said.

The second test for Lyme, called the Western blot test, is more specific, he said. But because both tests measure antibodies, sometimes the tests are not accurate when they are administered too soon because the antibodies have not developed enough to register a positive result, Kelleher said.

He said he think doctors should do both tests.

"The problem is, there are a lot of physicians who don't," Kelleher said.

Meanwhile, Lyme diagnosis has already generated controversy in Northern Virginia. Leila Zackrison, a doctor in Alexandria, went before the state medical board on allegations that she misdiagnosed Lyme in three patients, the Richmond Times-Dispatch reported last week.

In one case, Zackrison allegedly diagnosed one patient with Lyme and prescribed 12 weeks of antibiotics and a catheter to the patient, despite a lack of supporting evidence and testing that contradicted the presence of Lyme, the Times-Dispatch reported. The patient got a second opinion, and was diagnosed with fibromyalgia and malnourishment, the Times-Dispatch reported.

The state medical board cleared Zackrison, finding that while the care was not optimal, there was no clear evidence of a violation of law, the Times-Dispatch reported.

Life after a diagnosis

When Lyme disease is detected in the early stages, it can be treated with an aggressive course of antibiotics. But left untreated, Lyme can develop into a chronic condition and compromise people's immune systems.

Since first noticing symptoms such as extreme fatigue, migrating arthritis, and back and knee pain in 1997, Collins also has been diagnosed with heart problems and breast cancer, which she attributes to her weakened immune system.

"We look healthy," said Collins, who is the mother of two sons, Clayton, 8, and Carson, 6. "I think that's another reason the diagnosis is messed up a lot."

Lyme has turned Collins' life -- and those of the other three women interviewed -- upside down, from medical bills to discussions in some cases about whether to have more children when they are still sick with Lyme.

"It affects every system, everything in the body," said Cindy Courtright, who is a former competitive triathlete and nurse in the labor and delivery unit of Carilion Roanoke Community Hospital.

Courtright, who lives at Smith Mountain Lake, now must nap several times a day, administer antibiotics through has an intravenous tube into her chest, and often has to rely on relatives to care for 3-year-old son, Johnny.

"Not being able to take care of my child has been the hardest part," Courtright said.

Courtright, Julia Collins, Kim Mackey and Amy Pace now go to doctors in other states they refer to as "Lyme-literate." Between them, they've traveled to Nevada, Colorado, Long Island, Maryland and Seattle, for medical treatment. They share information about treatments such as antibiotics, supplements, and hyperbaric chambers.

But the women are also concerned that the testing for Lyme is unreliable and that much of the medical community does not understand the disease. They think doctors should diagnose patients not only on test results, but on their symptoms.

"There are a lot of doctors who believe Lyme is a short disease," said Mackey, who was diagnosed with Lyme in Connecticut and moved to Roanoke County about three years ago.

"Lyme doctors understand it to be a long-term, ongoing infection if you don't catch it right away," she said.