The Chronic Lyme Controversy

Find out the truth behind this common disease

More from Woman's Day
Advertisement - Continue Reading Below


What is Lyme disease?

Infected ticks spread the illness by passing on a type of bacteria. If you get bitten by one of these ticks, you may notice a red "bull's-eye" rash around the bite. (Some people get a rash but not in the classic "bull's eye" shape, and others don't notice a rash at all.) You may also develop flu-like aches and pains, fever, headache, and joint pain. Once your doctor diagnoses you with Lyme (by using a blood test and/or reviewing your symptoms), she'll probably give you antibiotics.

Most Popular

Medical experts agree that Lyme disease needs to be diagnosed and treated ASAP, because most cases can be cured if they're caught early. If you wait too long, the infection can spread and may cause permanent damage to your joints, heart, and nervous system. That's why it's so important to check yourself for ticks after you've been outdoors and be on the lookout for any new rashes. If you think you've been bitten by a tick or notice any other symptoms, see your doctor right away.

The Controversy

The conflict over Lyme disease involves the 10-20% of patients who don't get better after treatment. Most mainstream doctors believe that some people stay sick because the infection had a chance to cause damage before it was treated (even though these people no longer have Lyme). They call this post-Lyme syndrome.


Lawrence Zemel, MD, chief of the division of rheumatology at the Connecticut Children's Medical Center and a spokesperson for the Infectious Diseases Society of America (IDSA), believes that most people with post-Lyme syndrome don't have an active infection. He says some people who once had Lyme are still sick because the infection was treated too late. Others may have conditions unrelated to Lyme disease, even if they've had Lyme in the past. "I've also seen many patients who thought they had chronic Lyme, but when we reviewed their cases carefully it turned out they never met the criteria for Lyme in the first place," he says.

"Patients clearly experience symptoms that are very real, but what's causing them? People would rather attribute them to Lyme than accept that we don't know what's wrong with them or be told that they have another condition like fibromyalgia or chronic fatigue syndrome," says Dr. Zemel.


Dr. Horowitz says that chronic Lyme can be very hard to treat because ticks can carry many types of bacteria, and when people are bitten they may get infected with more than just Lyme. "The sickest chronic Lyme patients don't just have the organism responsible for Lyme disease; they're also co-infected with a whole host of other organisms. Their immune system can be overwhelmed by these multiple infections," he says.

He and other doctors who treat chronic Lyme say that giving patients antibiotics long-term usually helps them get better. "The medical literature shows that the organisms that cause Lyme can persist in the body indefinitely," says Dr. Horowitz, and that's why long-term antibiotics really work. Patients often agree, and many have become outspoken advocates. However, the National Institute of Allergy and Infectious Diseases (a division of the NIH) says that that there is "no evidence that extended antibiotic treatment is beneficial" and that it can in fact be dangerous.

The Debate Continues

Both the IDSA (with which Dr. Zemel is affiliated) and the ILADS (with which Dr. Horowitz is affiliated) have written their own set of treatment guidelines for Lyme disease. However, the Centers for Disease Control and National Institutes of Health support and follow the IDSA guidelines. As a result, some insurance companies have denied coverage for the long-term antibiotic therapy that's recommended by ILADS. Additionally, some state medical boards have investigated and revoked licenses of doctors who have prescribed long-term antibiotics, saying that it's against the IDSA treatment guidelines.



Most Popular: