Under our skin

Neal Doran knew something was wrong when he couldn't even push open a door. A fever and severe headache morphed a week later into severe joint pain, especially in the left shoulder. Bedridden and in constant pain, Doran, a biology professor at Patrick Henry College, wasn't sure he would be able to return to teaching in the fall.

The mystery was solved when Doran saw Dr. Martin Korkowski in Lansdown, Va., who told him he had Lyme disease. After 30 days on antibiotics, Doran was cured.

Charlotte Healy first became sick in 1997. In a few years, the mysterious illness completely incapacitated her.

"I was in dire-straights. I almost died of cardiac arrest," Healy said. "I went to 38 doctors who fundamentally told my husband, 'She's fine.' Lyme disease nearly tore apart my marriage. My husband thought that I was crazy."

Seven years later, Healy was finally diagnosed with Lyme disease. Unlike Doran, Healy was put on long-term antibiotics and a variety of non-traditional treatments. Her road to recovery has been slow with many relapses in between. For Healy, there was no simple cure.

Their stories highlight a controversy over the possible chronic nature of Lyme disease. Cases like Doran's match traditional case definition and treatment guidelines -- which deny any chronic element to Lyme -- from the Infectious Disease Society of America (IDSA) and the Centers for Disease Control (CDC). Under this paradigm, long-term cases like Healy's are difficult to explain and even harder to classify in terms of public policy, insurance and medicine.

Libraries in Loudoun County are spending June through August educating the public by showing the Oscar-nominated documentary Under Our Skin (2008). The haunting film exposes the rarely-told story of Lyme disease by following several people suffering from the illness.

Dr. Sarah Fletcher, a Sterling specialist who mainly treats Lyme, facilitated the discussion after the film played in Ashburn Tuesday. She has suffered from the disease for the past 10 years. Many members of the crowded audience also either formerly or currently suffer from Lyme.

Virginia had 1,245 reported cases of Lyme disease last year. Recent wet weather has caused heavier foliage, leading to an increase in ticks, which often rest in leaves, on logs and in grass.

Fletcher said 75 percent of people in Loudoun County are bit in their own backyard. Ticks carry Lyme disease, but they can also carry up to 30 other diseases, and the combination can overwhelm the human immune system.

Like syphilis in the 19th century, Lyme disease has been called, "The Great Imitator." It is commonly mistaken for conditions such as chronic fatigue syndrome, lupus, rheumatoid arthritis, fibromyalgia, amyotrophic lateral sclerosis (ALS) and multiple sclerosis (MS). Patients are often misdiagnosed, told their symptoms are merely in their head or referred to a psychiatrist.

While the medical community agrees that Lyme is usually caused by a bite from a deer tick, intense internal and political debate swirls around its symptoms, testing and treatment. The most disputed question: can it be "chronic"?

Chronic controversy

Doran experienced the most common Lyme treatment: 10-28 days of the oral antibiotic Doxycycline. If the disease is diagnosed and treated quickly, most insurers and the official medical community claim 95 percent of people are cured within a few weeks.

However, some, like Healy, continue to suffer Lyme-like symptoms for months or years after initial antibiotics. Ailments include severe fatigue, anxiety, headaches, joint pain, difficulty concentrating and other neurological problems.

The IDSA writes what most physicians consider the authoritative guidelines for clinical assessment, treatment and prevention of Lyme disease.

"There is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease," a 2006 IDSA article stated. "Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic (>6 months) subjective symptoms."

According to the American Lyme Disease Foundation, empirical data shows that long-term antibiotic treatment risks "significant potential harm" from conditions such as superbugs, life-threatening bacterial infections that develop resistance to antibiotics and can spread to others.

Although the IDSA claims it does not tell insurance companies what to cover, companies use the guidelines to justify limiting coverage of long-term antibiotic treatment.

Some charge that the ISDA allowed drug companies, makers of Lyme diagnostic tests and others with financial interests in Lyme treatment protocols to influence the outcome, a charge the ISDA denies. Despite its claims of neutrality, the IDSA has sent almost a dozen letters over the past 3 years to state and federal lawmakers opposing any legislation that attempts to sanction long-term antibiotics for Lyme.

In one recent letter, the ISDA claimed, "A small, financially conflicted minority of physicians... benefit from diagnosing Lyme as a 'chronic' disease and by prescribing long-term antibiotic use to treat it."

Laws in California, Connecticut, Massachusetts and Rhode Island protect doctors who prescribe long-term antibiotics from medical malpractice lawsuits. Other states, like Minnesota, have legislation that also requires mandatory insurance coverage for chronic Lyme treatment. A spokesperson for the IDSA declined to comment on their advocacy efforts.

The IDSA attributes the symptoms of people like Healy, who continue to have problems after antibiotic treatment, to four possibilities:

The dispute over chronic Lyme has split the medical community. The majority of general practitioners hold to the IDSA standard case definition and the 30-day Doxycycline round. However, some self-labeled Lyme Literate Doctors (LLMDs) believe Lyme to be a chronic disease requiring long-term antibiotics and non-traditional treatments.

Dr. Paul Auwaerter, associate professor at Johns Hopkins School of Medicine and a specialist in infectious diseases, said that although some people do have persistant symptoms after Lyme treatment, "there is no evidence that we can find that shows... an active infection."

He added that at least one study showed no difference in results between long-term antibiotic treatment and a placebo.

Auwaerter worries that the chronic Lyme diagnosis has simply become a catchall for a variety of actual diagnosable conditions. "I see many people in my office who have been on antibiotics for months and years for Lyme disease when really their other conditions should have been diagnosed more specifically."

LLMDs have a very different view of the facts. Dr. Joseph Burrascano, a leading figure in non-traditional Lyme treatment, explains that chronic Lyme disease is a result of co-infections the infectious tick also carries.

"A huge body of research and clinical experience has demonstrated the nearly universal phenomenon in chronic Lyme patients of co-infection with multiple tick-borne pathogens," Burrascano said, emphasizing the need for clinical diagnosis and individualized treatment.

Negative pressure

The medical community places a striking amount of negative pressure on LLMDs. Few Lyme specialists allow the fact to be posted on the Internet; many have been reported to state health clinics and had their license revoked.

"Insurance companies don't want to pay for anything outside of standard medical protocol so they will turn in doctors to the medical board of the state the doctor has a license in," Healy explained.

While serving as national Lyme disease awareness advocate, Healy said she has witnessed this unfortunate process several times. A variety of online Lyme disease support groups exist to help people locate specialists in their area.

Last year, Virginia Governor Bob McDonnell created a Lyme disease task force. The purpose of the task force is to travel around the state, assessing how prevalent Lyme is within the state, and recommend legislative changes, including the possible reintroduction of a bill that protects doctors who prescribe long-term antibiotics.

The task force, chaired by Mike Farris, chancellor of Patrick Henry College, is bringing hope to those doctors and patients who are convinced that chronic Lyme is real and affecting thousands.

"The model that Dr. Farris is putting in place here may be the way we can circumvent the larger groups like the CDC and IDSA," Healy said. "If every state government ultimately brought to the House floor that there is an epidemic being largely ignored here, there could possibly be enough pressure put on the major bodies to finally do the formal testing."

The task force report is due to be compiled and presented to McDonnell in the spring. "People aren't willing to just shut up and walk away any more," Healy said. "They aren't willing to have their doctor pat them on the back and say, 'You're fine.'"

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