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THE DIFFICULT PROBLEM OF ONE IN 10 CASES OF LYME DISEASE:
Is it co-infection? // Or factors unique to the patient? // Or bacteria-evading antibiotics? // Or are there other reasons why it won’t go away?

When Lyme Lingers

By David Howard // Spring 2014
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Grant Cornett

The idea that he might have Lyme disease never crossed Ethan Robert’s mind. His symptoms began in 2009 with pain in a sciatic nerve that ran down his left leg. After a month the pain went away, but the following year his shoulders and elbows hurt, and the pain migrated to different joints in his arms for about 18 months. Robert, who lives in Boston, wrote that off to overexertion at the gym.

Pain later flared in his hip and his jaw, and by last summer, he had developed marked swelling and pain in both knees and an ankle—four years after his ordeal began. When that siege of arthritis finally prevented him from walking to work, he called his doctor, who referred him to the rheumatology department at Massachusetts General Hospital. Robert wound up seeing Allen Steere, the researcher who produced the first conclusive account of Lyme disease in 1977 and is now lead investigator of the illness at the Center for Immunology and Inflammatory Diseases at MGH.

Tests showed that Robert did indeed have Lyme, and he was treated with antibiotics—first with oral doxycycline and then with intravenous ceftriaxone. Although his arthritis improved and tests for the bacterium that causes Lyme eventually came back negative, his joints were still inflamed. So he was prescribed methotrexate, an anti-inflammatory and immunosuppressive drug commonly used to treat rheumatoid arthritis. The joint inflammation finally went away, and he’s now getting physical therapy to help regain mobility.

Each year, the U.S. Centers for Disease Control and Prevention logs the cases of Lyme disease that physicians report—a total of about 30,000 every year. This makes it the nation’s most commonly reported vector-borne illness (meaning a disease spread by a carrier such as a mosquito, tick or mammal) and the seventh most commonly reported infection overall. Knowing that Lyme disease is underreported, the CDC conducted three studies to estimate how many cases actually occur. They discovered that the number is closer to 300,000—“and even that may be a somewhat conservative estimate,” says Steere.

Lyme disease occurs naturally in animals in a cycle involving deer; mice, chipmunks and other small rodents; and the deer tick. The adult tick’s preferred host is deer, but in its immature nymphal stage, primarily responsible for transmitting Lyme to humans, the tick feeds on small rodents, usually in the late spring and summer. Human infection begins with a bite from an infected tick.

Steere was a 32-year-old rheumatologist when he and his colleagues discovered Lyme disease while investigating the outbreak of a mysterious illness in wooded eastern Connecticut; the malady was named for Lyme, Conn., where they conducted their research. Seven years later, Willy Burgdorfer, a medical entomologist at the National Institutes of Health’s Rocky Mountain Laboratories, identified the cause: a previously unknown spirochete, or spiral-shaped bacterium, that was subsequently named for him: Borrelia burgdorferi.

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1. “Lyme Disease,” by Eugene Shapiro, The New England Journal of Medicine, May 2014. This paper walks readers through the diagnostic and prescriptive steps Shapiro takes in caring for a pregnant 32-year-old woman with a skin rash who had been bitten by a tick.

2. “Lyme Disease,” by Allen C. Steere, The New England Journal of Medicine, July 2001. This seminal review cited many times in medical literature covers how the spirochete is transmitted and goes about its business, as well as the various physical manifestations of its presence in a human host.

3. “Lyme borreliosis,” by Allen C. Steere, Harrison’s Principles of Internal Medicine, 18th Edition, Chapter 173, pp. 1401–1406. Harrison’s Principles is the most widely read book of its kind. Steere’s contribution covers guidelines for diagnosis and treatment and other essential information.

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