Misdiagnosis: Lyme Disease Dangers

July 4, 2008 — -- The Fourth of July means we're in full summer swing, but that also means it's prime time for Lyme disease — the painful, debilitating infection spread by ticks. The Centers for Disease Control says more than 20,000 people get the disease every year, and the numbers are rising.

An emotionally charged new documentary titled "Under Our Skin" looks at sufferers of chronic Lyme disease, a painful condition at the center of a heated medical debate.

The symptoms are various. One Lyme disease sufferer showcased in the documentary likened the pain to "being all tied up like a mummy, so you can't move anything, and tape across your mouth so you can't say anything."

Ben is a baseball player whose hands shake uncontrollably. He describes how the disease changed his life: "I went from being a gifted athlete to, you know, times where it was hard to put a shirt on."

A young girl named Mandy describes her mental state as confused, but that "doctors said there was nothing wrong with me. I was just making it all up."

Most cases of Lyme disease can be treated easily with a short course of antibiotics, but for some, persistent symptoms are challenging conventional medical wisdom.

Chronic fatigue syndrome. Lupus. Fibromyalgia. Amyotrophic lateral sclerosis (ALS). Multiple sclerosis. These are some of the diagnoses that the subjects of "Under Our Skin" say doctors have incorrectly placed on them. And sometimes they receive no diagnosis at all.

One patient was told, "There's no medicine for you. You're an attractive girl. You don't feel like you're getting enough attention."

Patients like these say they are suffering from an ongoing Lyme infection, but various doctor groups hotly contest whether "chronic" Lyme disease actually exists. They are at odds over the scientific evidence.

Lyme disease, if treated early, can be cured with antibiotics. Usually a 10-to-28-day course of medicine will cure up to 95 percent of people within a few weeks. But it can progress to arthritis, meningitis, nerve and heart damage, and other chronic problems if not treated soon enough.

Dr. Gary Wormser, chief of infectious diseases at New York Medical College, told Newsday that "long-term antibiotic therapy has not proven effective and may be dangerous."

Dr. Martin Blaser, who is featured in the documentary and is a member of the Infectious Diseases Society of America, as well as New York University's School of Medicine, is cautious to medicate as well. "We want to help people who are suffering — that's our job. But our job is not to make things up just because people want answers. We look at the scientific literature, and we try to guide their doctors."