Addressing the controversy over ‘chronic Lyme disease’

Kris Hickman

About Kris Hickman

Kris Hickman (@the_index_case) is a graduate research assistant for AHCJ, pursuing a master’s degree in public health. She has a bachelor's degree in anthropology, with a minor in journalism, from the University of Missouri. She spent two years in Zambia as an HIV/AIDS community education volunteer in the Peace Corps. She aspires to be an epidemiologist and science writer.

Image by Penn State via Flickr

Image by Penn State via Flickr

Covering Lyme disease can be a complicated endeavor. It’s hard to diagnose, and it’s even more difficult to decide what to call the ongoing symptoms. Janice Lynch Schuster reported on the controversy in The Washington Post, discussing both Lyme disease and its aftereffects.

According to the American Lyme Disease Foundation, Lyme disease, a bacterial infection spread by deer ticks (also known as blacklegged ticks), can cause fever, chills, and severe joint pain. However, detecting a tiny tick is a challenge, and the famous red bull’s-eye rash associated with Lyme-carrying tick bites doesn’t always occur. Many people suffer symptoms for months without a diagnosis, and those suffering the effects of Lyme disease are frequently brushed off by health care professionals, who dismiss symptoms as psychosomatic or stress-related.

As if that weren’t enough, the 300,000 people thought to be infected with Lyme disease each year may suffer chronic symptoms such as body pain or “brain fog” even after diagnosis and antibiotic treatment.  Experts at the Centers for Disease Control and Prevention (CDC) say that 10 percent to 20 percent of people who are diagnosed with the disease and complete a two- to four-week course of antibiotics will “have lingering symptoms of fatigue, pain, or joint and muscle aches,” known as “post-treatment Lyme disease syndrome.”

However, other experts are quick to dismiss the idea of post-Lyme syndrome. It’s important for journalists writing about Lyme disease to understand the disagreement in the medical community over these lingering effects.

Members of the International Lyme and Associated Diseases Society say the long-term symptoms are chronic Lyme syndrome, which is an ongoing bacterial infection rather than an autoimmune response. Some say these patients will benefit from long-term antibiotics or intravenous antibiotics, but studies have failed to show this treatment as having any significant effect.

Lynch Schuster, whose daughter has suffered lingering symptoms of Lyme disease for 12 years, asked some researchers to clarify the controversy.

For Gary Wormser, an infectious-disease expert who helped develop Lyme disease guidelines for the Infectious Diseases Society of America, chronic symptoms of Lyme disease are a challenge to treat, test and define.

“What is the right approach to this?” Wormser asked. “We don’t have guidelines for medically unexplained symptoms. It is frustrating, and it is hard to fund research on this…Doctors in general have a hard time putting a specific name on symptoms that are quality-of-life-threatening, but not life-threatening.”

Paul Auwaerter, a clinical director for infectious disease at Johns Hopkins, said many of his patients also have symptoms that are medically indeterminate, including fatigue, musculoskeletal pain, neurocognitive dysfunction (“brain fog”) or poor sleep.

He said Lyme disease is “capable of inflicting these symptoms on previously healthy people – not a large number, but a small minority develop a post-infection syndrome.”

There are no tests for ongoing conditions associated with Lyme disease because after treatment patients will not test positive for the disease. Wormser and Auwaerter discourage treating those conditions with long-term, high-dose antibiotics, because they come with severe safety risks; intravenous drugs can cause central-line infections or clots, while oral or injected antibiotics can drive up antibiotic resistance.

Map via CDC

Map via CDC

In the meantime, experts are still looking for a cause of ongoing Lyme disease symptoms. Auwaerter proposed “antigenic debris” – bacterial cellular residue from a previous infection – but there is no consensus in the medical community as to what causes these symptoms.

Lynch Schuster wrote that, for now, the best strategy is prevention.  When out in the woods or tall grass, people should protect themselves from deer tick bites with long sleeves and pants, wear light-colored clothing, use insect repellent and check for ticks afterward.

“Watch for symptoms of Lyme and, if they occur, take the tick and see a doctor,” she said. “Early treatment is very effective – and long delays may cost you for years.”

More resources on Lyme disease:

Other coverage of this and other Lyme disease controversies:

For more about how Lynch Schuster covered this story and suggestions from other journalists, AHCJ members can read the archived messages on the electronic discussion list.

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