Lyme Disease and seizures

Ashley Miller tossed a pack of needles and syringes onto a table while a nurse took notes on a sheet of paper.

“What’s your pain level today?” the nurse asked, looking for a number between one and 10, with 10 being the worst.

“About an eight,” Miller said, arranging her 100-pound, 5-foot-3-inch frame into a reclining chair.

“Where does it hurt?”

“My jaw, neck, knees and wrists,” Miller said.

“Still using the wheelchair around school?”

“Yes.”

Miller, a 20-year-old student at Methodist University, suffers from Lyme disease, a tick-borne illness that’s wreaked havoc on her joints and nerves and caused her to have seizures.

While the disease itself is a certainty — Miller has tested positive for the bacteria that causes it — the idea of long-term, or chronic, Lyme disease is hotly disputed in the medical community.

As a result, Miller’s insurance doesn’t pay for her medical visits or the 20-plus pills she takes every day.

It’s also why her doctor, after trying to help for two years, has nearly given up.

“He’s either running out of ideas, or he thinks I’m beyond the scope of his practice,” she said.

Every week, Miller goes to Home Choice Partners to have the needle changed on an intravenous port that has been surgically implanted into her skin, just under her right collarbone.

She receives medicine and needles in the mail once a week so she can inject herself daily with antibiotics.

Miller thinks she contracted the disease while conducting a science experiment in the woods near her high school, Reid Ross Classical.

Since then, her condition has worsened. Her joints and muscles have become so weak that she uses a portable wheelchair to get to classes on campus.

Miller is one of thousands of people across the country in a similar situation, said Pat Smith, president of the Lyme Disease Association, a New Jersey-based advocacy group for Lyme disease patients and the doctors who treat them.

Smith said treating Lyme disease for longer than a few weeks can put doctors into tricky territory, one in which insurers won’t pay and doctors can lose their licenses for over-treating patients.

The Infectious Diseases Society of America, which sets the guidelines for the treatment of Lyme disease, advises doctors against long-term antibiotic therapy, saying it’s unproven, potentially dangerous and expensive.

Once the guidelines were set, most of the medical community and insurance companies followed suit.

“The guidelines became a de facto law,” Smith said.

Basically, Smith said, “the guidelines say there is no such thing as chronic Lyme disease.”

It also means there’s not an approved treatment, either.

But some patients, such as Miller, believe the long-term antibiotic therapy — and other treatments not included in the guidelines — could be the only hope they have for a cure.

“There are so few doctors nationwide willing to take risks,” Smith said. “There’s a huge amount of risk for treating Lyme disease long-term.”

For several years, battles about the definition, diagnosis and treatment of chronic Lyme disease have been waged in medical journals, courtrooms, boardrooms and legislatures.

Lyme disease was discovered in the 1970s by Dr. Allan Steere, a rheumatologist at Yale University who interviewed several adults and children suffering from juvenile rheumatoid arthritis.

Steere eventually found the patients had a disease caused by bacteria transmitted by a tick. He named it Lyme arthritis, and later Lyme disease, after Lyme and Old Lyme, Conn., where the disease was first found.

Since then, thousands have been diagnosed with the disease, which can be cured with antibiotics if discovered in its early stages.

The disease often is characterized by a round rash that appears a few days after the initial bite and spreads over time, sometimes forming into the shape of a bull’s eye, according to the Centers for Disease Control and Prevention.

Doctors also can diagnose Lyme disease based on other symptoms, such as facial palsy, arthritis, and a history of possible exposure to infected ticks, the CDC sayd.

Some laboratory tests help, but they aren’t always reliable, said Dr. Megan Davies, a medical epidemiologist at the N.C. Division of Public Health.

If not caught early, symptoms can become murkier and include muscle and joint pain, arthritis, cognitive defects, sleep disturbance or fatigue, the CDC says.

In the eastern United States, black-legged ticks transmit the disease, usually in their nymphal stage in spring or early summer, Davies said.

North Carolina reports a relatively small number of Lyme disease cases every year, compared with states in the Northeast, where thousands of cases are found.

The largest number of cases North Carolina has seen was in 2003, when 156 were reported to the CDC.

Last year, 50 cases were reported, Davies said.

Part of the reason for lower numbers could be under-reporting and under-diagnosis, but it’s also a result of the ecology, Davies said.

In the South, the nymphal stage of the black-legged tick tends to feed on reptiles rather than rodents or small mammals.

Reptiles are not good hosts for the bacteria that causes Lyme disease. As a result, bacteria don’t survive as easily and are less likely to infect humans, Davies said.

“It’s a natural phenomenon that seems to be protecting mammals in this area,” she said.

Search for a cure

While that could be good news to people afraid of contracting the disease, it’s cold comfort to Miller, who keeps searching for a cure.

She plans to go to a doctor in South Carolina who treats patients for the disease exclusively. It’s a pricey proposition — $750 for a first-time consultation, with treatments that aren’t necessarily sanctioned by the greater medical and scientific communities.

But so far, Miller said, it’s all she’s got.

Staff writer Jennifer Calhoun can be reached at calhounj@fayobserver.com or 486-3595.