Allen Bargfrede said he was jumping into the shower when he spotted a tiny tick on his ankle that would change his life.
“I washed it off and didn’t think about it anymore,” said the 39-year-old associate professor of music business at Berklee College of Music in Boston, who was in Spain at the time for a conference. “I remember thinking to myself, ‘I hope I don’t get sick from that.’”
Two days later, Bargfrede said he developed the classic bull’s eye rash of Lyme disease, a bacterial infection transmitted through tick bites. The rash eventually gave way to a fever, cough and “strange headaches,” he said.
“I had severe anxiety,” said Bargfrede, who was getting ready to head home to the U.S. when the symptoms began to worsen. “I was crazy scared to get on an airplane.”
Bargfrede said it took nearly a year to confirm that he had Lyme disease after a string of “negative” tests, dangerous treatments and disbelief from most of his American doctors.
The best treatment for Lyme disease is the prompt use of antibiotics, according to the Centers for Disease Control and Prevention. But the CDC acknowledges that its recommended test can miss Lyme disease in its early stages, and it only catches an American species of the bacterium – not the one Bargfrede contracted in Spain.
The complexity of the bacterial disease, coupled with a raging controversy in the medical community over how to diagnose and treat it, is confusing for both doctors and patients. And in what has been dubbed “the Lyme wars,” camps have been divided between those who believe the disease can be consistently tested and treated effectively and those who believe in a chronic and disabling form of the disease that is often not detected and is resistant to recommended treatments.
“The main problem for me was not being diagnosed early enough,” he said. “The reality is, if they had gotten it right when I first went to the doctor, this wouldn’t have happened to me.”
According to the CDC, the cause of Lyme disease is the bacterium Borrelia burgdorferi, and the agency’s recommended test only detects that particular species. But Bargfrede’s illness was caused by Borrelia garinii, a species that’s prevalent in Europe but not in the United States.
Bargfrede had a C6-based ELISA test, which is widely used in Europe and can detect as many as 18 species of the Borrelia bacterium. But the test is not used in the U.S., according to the CDC.
On its Traveler’s Health webpage, the CDC notes that the garinii strain causes Lyme overseas, but adds that the disease is “rarely reported in returning travelers.”
The CDC-recommended test has its limitations, according to a recent investigation by the New England Center for Investigative Reporting. It is only reliable later in the progression of the disease and is limited only to detection of the American variety of the bacterium.
As a result, a cottage industry of more than 70 alternative tests has cropped up in labs around the country, some reputable and some not. The NECIR report found that many of these alternative tests are ineffective, yielding false-positive results and leading doctors to over-diagnose a patient and order expensive treatments that may not work.
“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,” the article reads.
The CDC has become so concerned about these tests that it issued a warning in April for doctors and the public to avoid alternative tests.
“Ailing patients are increasingly forced to negotiate between the parallel medical worlds of doctors who use only federally recommended Lyme tests that may not catch the disease early on and ‘Lyme literate’ doctors who may diagnose them with chronic Lyme, often by using these alternative tests,” it continues. “Most insurers do not cover these tests – which range from $100 to more than $1,000 – forcing patients to swallow the cost.”
“Everyone agrees on both sides of this contentious debate that the tests need to be better,” said Beth Daley, who led the NECIR investigation.
“No test is 100 percent,” Daley added. But “the CDC test is awful. … And of all the other tests, some are scams.”
The many reputable labs that use alternative tests “are not purposely trying to pull the wool over your eyes, but there have never been any definitive tests to prove they work,” Daley said.
A CDC spokesman acknowledged this loophole makes alternative tests free from regulation.
About 300,000 cases of Lyme disease are reported annually, but they represent “only a fraction” of the total number of cases, according to the CDC. The disease is prevalent in the Northeast and Midwest, with nearly all of the cases landing in 13 states.
At first, the infection may causes flu-like symptoms like fever, headache and fatigue, as well as a bull’s-eye skin rash called erythema migrans. Untreated, it can travel to the joints, heart and even the central nervous system, potentially damaging the brain and heart.
The incubation period is typically three to 30 days, and nearly 80 percent of those who are infected with Lyme have the classic rash, according to the CDC. Most cases can be treated successfully with a few weeks of oral antibiotics.
The CDC recommends a two-tiered serological test for diagnosis of Lyme: an ELISA (Enzyme Linked Immunosorbent Assay), which is followed up with a Western blot, both of which spot antibodies produced by the immune system in response to the infection.
“There are limitations with the recommended test,” said Dr. Paul Mead, chief of epidemiology and surveillance for CDC’s Lyme disease program. “We would love to have better tests available, but it’s not as easy as it sounds.”
Since antibodies take time to appear, the CDC-recommended test is unable to detect the infection when symptoms first begin. Up to six weeks later, “there’s a good chance” the test will still be negative, but eventually the test will be positive if the disease is present, Mead said. Because of this lag time, most clinicians prescribe antibiotics prophylactically before getting definitive test results, he said.