Misdiagnosis: Lyme Disease Dangers

Some doctors dismiss the tick-born diseases' long term effects.


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."

On the other side of the treatment debate is Dr. Robert Bransfield, of the International Lyme and Associated Diseases Society. He says, "There's plenty of science that supports persistent Lyme disease, and it's a broader perspective and interpretation of the science. Many people who could be treated aren't and go on to suffer chronic illness that could be avoided and prevented."

Further complicating the problem, there is no reliable test that tells you if the Lyme infection is still present in the body. And doctors strongly disagree over long-term antibiotic use, which is often prescribed to these chronic patients. In clinical trials the results have been mixed, and for some its use has been fatal.

Blaser describes the difficulty of knowing how to treat a symptom. "Sometimes doing the wrong thing is worse than doing nothing. It's better to find out what's really going on and address that and treat it, then take an unproven therapy that can be dangerous."

Bransfield says, "If the risk of the disease is worse than the risk of treatment, then we want to treat. If it's not, then we don't."

And for those who are suffering, it's clearly worth the risk.

One Lyme patient on medication said, "If I had not been able to find doctors who would soak me in antibiotics for years, you wouldn't be talking to the guy you're talking to now. The folk myth is that somehow antibiotics are bad for you. I just have to say they're not bad for you if you have a fatal infection."

After six months of treatment, Ben noticed a difference in his condition. "It's without a doubt better. No question in my mind. I feel like I'm getting back to myself compared to the past. I think it's night and day."

Mandy agrees with Ben on medicine's efficacy. "You're so disabled by the disease, you're in a panic state. You want help. It doesn't matter — you'll pay anything to get your health back."

The Infectious Diseases Society recently agreed to review its governing guidelines for Lyme disease, in an effort to address the long-term medication debate.

Here are five steps to minimize Lyme/tick-borne disease this holiday weekend:

These includes tall grasses, piles of leaves and pretty much anywhere outdoors in early-mid summer, especially in Northeast and Midwestern states. And remember, other tick-borne infections lurk in many places.

Wear long pants, tucked into your socks; long shirttails, tucked into your pants; and long sleeves and gloves if working outdoors. Light-colored clothing will help repel hot sunlight and to "see the tick." They are the size of a tiny sesame seed, so they're pretty hard to see no matter what. Don't forget a wide-brim hat for sun protection. Wash clothes in hot water and dry them in high heat for an hour.

Protect yourself with 20 percent to 30 percent DEET or more potent Permethrin on clothes. (Hopefully your skin is now covered completely except for your face.)

Ticks can find the most unsuspecting of places to attach and feed, so make sure to have daily skin checks if you feel like you've been exposed. Remove any ticks promptly with a tweezer. If the tick is on your skin less than 24 hours, the risk of Lyme is very small. If it's on your skin longer than 24 hours, call your doctor and ask about a preventive dose of antibiotics.

If you have any concerns, ask your doctor about an antibiotic and/or blood test. Seventy percent to 80 percent of people infected with Lyme disease get a bull's-eye rash on their skin. Other symptoms include chills, fever, headache, fatigue, joint pain and swollen lymph nodes. Lyme disease can be treated with antibiotics, although pregnant women, young children and those allergic to antibiotics should consult with their doctor to decide the best treatment.

Just because medical science doesn't have the answer that doesn't mean you don't have a problem or it's all in your head.