All our lives we hear about the dangers ticks pose, and for good reason. They can carry a range of harmful bacteria and viruses, with the most known of them all being Lyme disease. One Boston man’s recent experience with Lyme disease, however, exposes numerous holes in the U.S. health care system’s ability to diagnose and treat the disease.
Allen Bargfrede, an associate professor of music business at Berklee College of Music in Boston, became infected while in Spain for a conference. He had just gotten in the shower when he saw the tick on his ankle. “I washed it off and didn’t think about it anymore,” he told Good Morning America. “I remember thinking to myself, ‘I hope I don’t get sick from that.’”
But he did. Two days later, he found on his ankle the trademark sign of an initial infection: a bull’s eye rash. He subsequently started experiencing symptoms of Lyme disease, including a fever, cough, and headaches. The headaches were strange, he said, causing “severe anxiety.”
It took 10 months for Bargfrede to find a doctor who would diagnose and treat him with the necessary antibiotics. The reason for this was because the American test for Lyme disease only tests for infection caused by the most common species of tick, called Borrelia burgdorferi. Additionally, doctors tend to suggest that the illness may be something else if tests come back negative.
The test, called ELISA (Enzyme Linked Immunosorbent Assay), is followed with a Western blot, and both are used to test for antibodies trying to fight the Lyme infection. However, the infection can have a prolonged incubation period, making it even more difficult for results to come up positive. Experts say accuracy improves with the progression of the disease, as antibodies begin to appear — by that point the patient may already be suffering.
What Bargfrede really needed was a C6-based ELISA test, which looks for infection caused by up to 18 species of ticks, including the one responsible for his illness, Borrelia garinii. He finally got the test, which is only provided in Europe, after a doctor who believed he had Lyme disease recommended he go back to Europe for tests. His test came back positive, but the doctor still wouldn’t give him antibiotics on the basis that “he didn’t believe the test.”
“All the while, I can’t think straight, and can hardly get out of bed,” he told GMA. “I was fighting for my life and with my doctor.” After trying other doctors — including one who wrongly prescribed him an IV (intravenous) solution of silver, which led to liver and kidney failure — he finally found one who would prescribe IV antibiotics. Finally, he was getting better.
The Centers for Disease Control and Prevention’s (CDC’s) protocol for handling Lyme disease has been widely criticized. Add to that the availability of mostly unproven Lyme disease tests from various labs across the country, and it’s apparent that these problems are not only complex but confusing for everyone. “An exemption in federal regulations allows many labs to offer Lyme tests without proof that they accurately identify the disease, leaving anxious patients and their doctors to decide which tests to believe,” a report from the New England Center for Investigative Reporting said.
But with nearly 300,000 people becoming sick with Lyme disease every year, a set of cohesive steps is growing crucial. The CDC says that no other methods for diagnosis, such as DNA tests or blood tests, have been reliable yet. “Certainly there is a lot of movement in terms of using [the c6-based ELISA test] more broadly in the U.S.,” Dr. Paul Mead, chief of epidemiology and surveillance for the CDC’s Lyme disease program, told GMA. “We are suggesting that as data becomes available to support that alternative, it would be a good possibility.”