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I was convinced I didn’t have Lyme disease. But guess what?

The tick-borne illness can manifest in mysterious ways — which is why we should test for it more often.

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For months, I had been feeling increasingly off. I’d get out of the car, stand up, and suddenly feel faint. I’d wake at night in a panic, coming out of dreams where I couldn’t breathe. Hills and inclines I once walked with ease became ever more challenging.

But there was nothing especially dramatic about this. Instead, a general sense of malaise crept up slowly, with no precipitating event that might shock me into action. On occasion I’d think about calling a doctor or heading into the emergency room, but then the thought would pass. I figured I had a cold, and self-medicated with Mucinex. That helped a bit.


But not enough.

And so one Saturday, my wife looked at me across the kitchen table and said, “We’re not doing anything today. Why don’t we make a quick visit to the ER?”

We drove to Massachusetts General Hospital, walked in, and at intake I was asked why I was there. Now, whenever anything seems amiss, I consult WebMD (where the symptoms either mean there’s nothing to worry about or death is imminent) and so, armed with my Internet-based degree in medicine, I explained that I was out of breath, likely had a low-grade case of walking pneumonia, and if someone could just prescribe me some Zithromax or Cipro, I’d be grateful.

I think it was the words “out of breath” that set off the alarm bells. Almost immediately, my vitals were being taken, I was given a quick echocardiogram, and suddenly it appeared I was in the middle of a major medical event.

But it’s just simple pneumonia, I explained.

“Your lungs are clear,” came the retort. “It’s your heart that’s the problem.”

And thus followed three days in the emergency room, filled with blood draws, a CAT scan, another echocardiogram, a stress test, a chest X-ray, countless EKGs, and two sleepless nights tethered to a heart monitor that blared whenever I began to doze.


I had what’s called heart block: The electrical signals that controlled my heartbeat were somehow obstructed, meaning my heart would beat abnormally, weakly, or sometimes miss a beat altogether. Doctors began talking about putting in a pacemaker.

But the question left unanswered by all of those tests was: Why was my heartbeat off? My blood tests came back normal; no signs of congestive heart failure, for example. The CAT scan and X-rays were unremarkable, as was my echocardiogram. And yet, I was thinking to myself, I’m dying.

And then into my hospital room strode Dr. Patrick Ellinor, director of MGH’s Cardiac Arrhythmia Service. “Sometimes,” he told me, “we see this in people who have Lyme disease.”

“Do you have Lyme disease?” he asked.

Wait a second, I thought. I never saw that in WebMD. So I said, “Absolutely not.”

“Well, we’re going to test anyway,” he said.

And a day later, the results came back: I had Lyme disease. In less than 1 percent of all cases, it causes what’s called Lyme carditis: The Lyme bacteria set up shop around the heart and can wreak havoc with its electrical signals.

Here’s the good news, and the reason those of us who live in New England should pay attention. As my primary care physician, Dr. Steven Atlas, explained, if caught in time, Lyme disease can be curable. In my case, all that was required was a 21-day course of antibiotics, administered intravenously, and the heart block would be no more.


A day after the Lyme test came back, I got my first dose of Ceftriaxone at 8 p.m., and by morning my heartbeat was already returning to normal. I was sent home that day with a PICC (peripherally inserted central catheter) line in my right arm, along with instructions on how to administer the antibiotic myself. My symptoms disappeared in a couple of days; the hills I struggled to climb became mere walks once more.

And if Dr. Ellinor — who I think of as MGH’s version of Dr. Gregory House — hadn’t been around? The heart block could have been fatal, and the disease would have spread ever further through my body. Even if at some later point another doctor figured out I had Lyme, the damage may have been done. As New York Times columnist Ross Douthat has experienced and written about, for many folks the devastating aftereffects of Lyme — severe pain, fatigue, and cognitive difficulties — can linger for years.

Which raises this question: Why don’t we routinely test for Lyme? The disease draws its name from Lyme, Connecticut, where it was first observed (and where, in an odd coincidence, my family used to vacation when I was young). At first relatively rare, today somewhere between 300,000 to 476,000 people in the United States get Lyme each year — most of them in the Northeast. Some notice the mark of an infected tick: a red bull’s-eye on the skin. But others, like me, never show any signs until the disease is in full bloom.


Sure, widespread testing would cost money — easy-to-administer, at-home tests for Lyme can be found online for about $100. But early testing would catch the disease before it does its damage. Even someone whose medical expertise comes mostly from Google knows that’s a lot better and cheaper than a five-day stay in the hospital.

Tom Keane is a frequent contributor to the Globe Magazine. Send comments to