Misunderstood, Misdiagnosed and Often Mistreated: Solving the Puzzle of Lyme Disease
Unsurprisingly for an illness known as “The Great Imitator,” the misconceptions surrounding Lyme Disease continue to proliferate. Acute or chronic? Highly treatable or stubbornly resistant? Misdiagnosed because of symptoms that mimic conditions like lupus, multiple sclerosis, Parkinson’s and Lou Gehrig’s disease, or overestimated for the same reason? While television celebrity Yolanda Foster recently gained national attention during her bout with chronic Lyme disease, she also fanned the flames of controversy surrounding this sometimes mystifying condition. A brief overview of current knowledge follows…however experts have not yet reached a consensus on all aspects of this disease.
Research indicates that Lyme disease is transmitted to humans by a bite from a tick infected by the spirochete bacteria, primarily found on the East Coast and in the Midwest. Carried by deer and migratory birds, Lyme disease is on the rise, estimated at 300,000 cases annually in America, considerably larger than the 30,000 cases earlier reported by the Centers for Disease Control (CDC).
The distinctive bull’s eye rash is one identifiable marker of the disease, seen in 70 percent of patients. In the early stages, fatigue and flu-like aches and pains are typical; in later stages, nerve numbness or pain, facial paralysis or weakness, and heart problems are seen; and if not treated, serious and long-term complications that affect the brain, joints, nerves, heart and muscles can occur, according to the Lyme Research Alliance.
Lab tests are generally needed to confirm the diagnosis, followed by a course of oral antibiotics. However, people with early Lyme disease do not develop antibodies for several weeks, resulting in frequent false negatives on the commonly used ELISA or Western Blot antibody tests. For that reason, treating patients based solely on clinical findings, such as a rash and known exposure to ticks, is recommended by some experts, while others advise more aggressive, longer and individualized treatment. All agree, however, that earlier treatment is more effective.
About 20 percent of patients with Lyme disease continue to experience symptoms months and years after treatment ends…and this is where the real debate begins. Muscle and joint pain, cardiac and neurological problems and fatigue have been reported by those with chronic Lyme disease. Some experts believe it indicates an ongoing bacterial infection, while others attribute lingering symptoms to residual damage to tissue and the immune system. Still others, including Dr. Allen Steere, who first recognized Lyme disease back in 1975, say it is being over-diagnosed, mistaken for chronic fatigue or chronic pain.
The continued questioning spurred John Aucott, MD, assistant professor of rheumatology at Johns Hopkins University School of Medicine and founder of the Lyme Disease Research Foundation, to launch the nation’s first controlled study examining long-term health and outcomes of the disease.
“It does no good to keep debating the existence of long-term problems related to Lyme disease while people are suffering a debilitating illness. These patients are lost. No one really knows what to do with them. It’s a challenge, but the first thing we need to do is recognize this is a problem,” he said.
The headwinds have been strong. Lyme disease ranks well below breast cancer and HIV/AIDS for federal funding, despite a significantly higher rate of cases, according to lymedisease.org, but Aucott’s study and others represent hopeful progress.
In the meantime, decrease your risk of contracting Lyme disease by wearing shoes, long pants tucked into your socks, a long-sleeved shirt, hat and gloves when walking in woodsy areas; sticking to trails and avoiding low bushes and long grass; and using insect repellents with a 20 percent or higher concentration of DEET. If you are bitten by a tick, call my office promptly, but do not panic…your chances of acquiring Lyme disease are no more than 1.4 percent.