The Lyme Labyrinth

The Lyme Labyrinth

An encounter with the tick-borne disease becomes a trip down the rabbit hole, where even doctors can't agree on what's what

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On one of the waning days of summer in 2009, I experienced a wave of achiness that seeped into my muscles.

I’m getting the flu, I thought.

The following day I felt hopelessly fatigued. I zoned out in front of the TV, hoping it was just a 24-hour bug. But by the weekend, the aches had intensified and migrated to my joints. Every intersection of cartilage and bone throbbed, down to my elbows and ankles. Even my cheekbones hurt. A week earlier I’d been a healthy 38-year-old; now I looked, and felt, like an elderly patient wracked with arthritis.

I hobbled to the doctor’s office the following Monday.

“Let’s draw some blood,” said Dr. Bill Condrell, my primary care physician in Washington, D.C. But he already had a hunch. “I have a feeling that you have Lyme disease.”

I was relieved by the quick diagnosis and what sounded like a simple treatment: A prescription for an oral antibiotic would cure what ailed me. What I didn’t know was that things are rarely that simple with Lyme disease.

Caused by the spirochetal bacteria Borrelia burgdorferi, Lyme disease is commonly transmitted by the black-legged tick, also called the deer tick. Mice are a natural host for the disease, but ticks transmit the infection from one carrier to another, including deer, dogs and humans, to name a few.  

The ticks that carry the bacteria are so small—at an early stage, no larger than a sesame seed—that they’re easily missed when they first attach themselves to the body. The primary symptoms include a bull’s-eye rash at the site of the bite—however, I didn’t have one, and many infected people neither notice nor develop a rash.

I did suffer a host of other symptoms suggestive of Lyme disease: aches, joint pain, fatigue and headache. It can take anywhere from a few days to a month or more for those to manifest. In some cases, infection causes more severe complications, such as swollen joints, facial paralysis, heart palpitations, incapacitating fatigue and more. Symptoms may persist for months or years.

Condrell ordered a course of doxycycline, an oral antibiotic frequently prescribed to treat Lyme. He also mentioned that occasionally a patient suffering from acute Lyme disease may test negative for the illness if antibody levels are too low for detection. But by the end of the week, a positive blood test confirmed the clinical diagnosis.

It’s unclear how long Lyme disease has been in the United States, but it was first noted in the 1970s, when parents living in or near Lyme, Conn., observed a slew of symptoms in their children—including a spreading rash on some—and learned they were suffering from juvenile rheumatoid arthritis.

After the reports drew the attention of researchers, experts identified the spirochete Borrelia burgdorferi in ticks living in the woods where the children played and made a connection between reactive antibodies in serum samples from affected patients.

Since then, Lyme has been identified in virtually every state, though most of the 30,000 incidents reported annually occur in several states east of the Mississippi, according to the Centers for Disease Control and Prevention (CDC) in Atlanta. Maryland is one of them.

The CDC’s Lyme disease website has a bevy of charts, maps and tables about the disease, but much of it focuses on the acute form, from which I suffered. The website is less forthcoming about a hotly contested form of the illness: a chronic condition that persists for months or even years after antibiotic treatment is complete.

Discussion about chronic Lyme disease is plagued with dissent among medical experts, practitioners and health agencies who disagree over the prevalence, diagnosis and treatment of the disease.

They even debate whether its chronic form exists at all. Disagreements have not only created a yawning divide in the medical community, they have also spawned numerous support groups, online chats and advocacy organizations that provide a daunting amount of information on what may or may not be a chronic form of the disease.

At the same time, many doctors and patients are reluctant to discuss it, given the controversy and contentious nature of chronic Lyme. The executive director of the Bethesda-based International Lyme and Associated Diseases Society turned down interview requests because “research institutions like [the National Institutes of Health] do not respect clinicians in the trenches.” And a representative of the American Lyme Disease Foundation (ALDF) in Lyme, Conn., didn’t want to say where he lives for fear of harassment from activists.

For its part, the CDC doesn’t address chronic Lyme, but rather a “post-treatment” syndrome, emphasizing that the symptoms, not the active infection, may linger for many months or longer. Its website notes: “Some evidence suggests that it is caused by an autoimmune response which damages the body’s tissues, even in the absence of an active infection.”

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