by Jennifer Crystal
Lyme carditis: When it comes to maladies of the heart, don’t overlook Lyme disease and its co-infections.
In the summer of 1999, after studying abroad in Paris, I backpacked with a friend through Europe. We slept on trains, stayed in youth hostels, and met hundreds of fellow college students wearing small packs on their fronts and campers’ packs on their backs. We were sun-kissed, culture-saturated, and happy. The world was different then, and we were lucky to have had such a carefree experience.
Well, it was carefree for my friend and fellow travelers. But for me, something wasn’t quite right.
As I moved from country to country, I started noticing a pulling sensation in my chest. I would be walking down a street, or waiting for a train, and suddenly feel something akin to a tight rubber band being stretched from one side of my breastbone to the other. It would come on without warning, but then dissipate, until I’d feel it again a day or two later. I brushed the sensation off as strain from my backpack, which easily weighed fifty pounds.
But I felt the pulling when I wasn’t wearing the pack, too. Back in the U.S., I decided to make an appointment with my primary care doctor.
The previous semester, a student at my college had dropped dead due to an undiagnosed heart condition. Her story was in the back of my mind as I traveled, and I relayed it through fearful tears to my doctor. I remember the soft touch of his hand as he laid a reassuring palm on my forehead. “Ohhh, how awful,” he said. “Of course you were worried. But no, that’s not what’s going on here.”
What was going on, he said, was costochondritis: inflammation of the cartilage that connects the ribs to the breastbone. The doctor was able to diagnose it by pressing gently on the area, which felt bruised. He explained that while painful, the condition was nothing to worry about, and might have been brought on by the strain of carrying my pack or by stress.
That latter reason was a catch-all rationale I’d heard repeatedly in the two years leading up to my European tour. During that time I’d wrestled with an on-and-off flu, frequent bouts of bronchitis, idiopathic fevers, and hypoglycemia. No doctor had ever drawn a connection between those symptoms, and when standard lab tests came back normal, I was told I was run down or stressed—or that maybe it was all in my head.
In fact, my body was harboring undiagnosed tick-borne illnesses: Lyme, Ehrlichia, Babesia and Bartonella. It would be another six years before a specialist drew the right connection between the symptoms and made an accurate diagnosis. The costochondritis was yet another clue that was overlooked, as was the tachycardia (racing heartbeat) I sometimes experienced. Lyme bacteria can squirrel into all organs, tissues, and cells, and if it invades heart tissue, it can cause Lyme carditis, which can manifest in a number of ways: costochondritis, tachycardia, bradycardia (slow heart rate), heart block (an electrical disconnect between the upper and lower chambers of the heart, causing them to beat at different rhythms), and myopericarditis (swelling of the heart).
Comparatively speaking, my symptoms were mild, and once I was accurately diagnosed and treated, I never experienced them again. Renowned oncologist Dr. Neil Spector was not as lucky. As he details in his memoir Gone In a Heartbeat, Dr. Spector experienced 16 years of episodic alternating tachy- and bradycardia, even once having the symptoms of a full heart attack. His heart rate would always return to normal, though, and his symptoms, like mine, were often blamed on stress. By the time Dr. Spector was accurately diagnosed with Lyme, he had dealt with brain fog, stiffening of the veins, visions of bright lights during sleep (later associated with lack of oxygen to the brain due to a slow heart rate), heart block, weight loss, and arthritis. He had a permanent pacemaker, a defibrillator, and ultimately underwent full blown heart failure and a heart transplant.
Had Dr. Spector’s heart problems been accurately diagnosed from the start as Lyme-related, he could have avoided this near-fatal trajectory. If your symptoms have been written off as “stress” and you know—in your heart—that something deeper is going on, please persist in finding the right doctor and right diagnosis.
If you have already been diagnosed with Lyme but have not had your heart checked, please ask your doctor to do so. Though the CDC only reports carditis in 1% of Lyme cases, its severity can be a matter of life and death.
Opinions expressed by contributors are their own.
Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at firstname.lastname@example.org