Pete Smith felt pain in his back, neck, ankle, and jaw. Newly relocated to Maine for his job, the Quakertown native started to have trouble keeping food down. Then came a skin rash and night sweats, prompting him to go to the emergency room on June 5, 2017.
The Maine hospital ran a test for Lyme disease, which came back negative, said his mother, Angela. Yet less than a month later, the athletic 25-year-old died of that very disease.
Lyme disease is well-established in public awareness, especially in Pennsylvania, New Jersey, and other northeastern states that are perennial hotbeds of the debilitating condition, caused by bacteria transmitted in a tick bite.
But death? The Smith family had no idea that was a possible consequence, and suspects most people are similarly unaware.
That is why they are speaking out in support of an Oct. 13 event at Ursinus College, in which actors will stage a dramatic reading about a similar case in 2013 in upstate New York. The cast, presented by the nonprofit PA Lyme Resource Network and Drexel University College of Medicine, includes Kathryn Erbe, known for Law & Order: Criminal Intent, and Frankie Faison, an alum of HBO's The Wire and the Netflix series Luke Cage.
While Lyme is not fatal in the vast majority of cases, advocates say that for too long the medical community failed to treat it with sufficient urgency.
Smith and the boy in the New York case, Joseph Elone, both were diagnosed with a condition called Lyme carditis, meaning that bacteria from the tick bite penetrated the heart. It affects about 1 percent of patients who contract Lyme each year in the United States, according to the Centers for Disease Control and Prevention. Given that the agency estimates there are 300,000 new Lyme cases a year, that would mean roughly 3,000 get the heart condition. But only a handful of those are fatal, the CDC says. Between 1985 and 2018, nine fatal cases of Lyme carditis have been published in medical literature, according to the agency.
But Marina Makous, a Lyme specialist who practices in Exton and is serving on a panel at the Oct. 13 event, warns that the true number of fatalities may be higher. Early on in the disease, the blood tests for detecting evidence of Lyme infection are notoriously unreliable, so some physicians may attribute a fatal heart condition to other causes, she said.
"Probably some cases are not recognized," Makous said.
When Lyme bacteria enter the heart, they can infect the circuitry that connects the organ's upper and lower chambers, said Matthew Goldstein, a cardiac electrophysiologist with Lankenau Heart Institute at Paoli Hospital.
That results in a condition called an atrioventicular block, meaning the signals that orchestrate the heart's pumping action are delayed or interrupted, causing shortness of breath or even fainting, Goldstein said. Patients recover after prompt treatment with antibiotics.
"It is completely reversible in almost every case," he said.
Death can occur if the bacteria spread to the muscle and lining of the heart, leading to inflammation and irregular heart rhythm, but such cases are uncommon, Goldstein said.
After Smith's Lyme test came back negative, physicians told him his symptoms were caused by a virus and prescribed Benadryl, his mother said. His rash went away, but later came back "with a vengeance," she said. His other symptoms got worse, too, and two weeks after his initial visit to the emergency room, he went back.
Five days later, feeling dizzy, Smith called 911 and was diagnosed with a heart block. Physicians installed a semi-permanent pacemaker and tested him again for Lyme. This time, the result was positive — though it was not clear whether he was bitten by a tick in Pennsylvania, Maine, or Connecticut, where he had done some work for his employer, financial services giant KPMG.
Physicians started him on intravenous antibiotics, and his rash subsided. After four days in the hospital, he was declared well enough to go home, his mother said. She drove him back to Quakertown.
Two days later, the young man collapsed when climbing the steps, and an ambulance crew was unable to revive him, his mother said.
The oldest of six children, he is one of several Lyme victims whose lives are being commemorated at the event, which starts at 5 p.m. Tickets cost $60 and can be purchased at palyme.org or by calling the college special events office at 610-409-3002. Proceeds go toward educating the public about Lyme and other tick-borne illnesses.
Angela Smith shares the concern that more people are dying of Lyme disease than is apparent.
"I believe people are dying without any diagnosis," she said. "We really don't know how widespread this is."