My father’s journey down the Lyme-disease rabbit hole started with a swollen wrist. An oblong rash appeared that was hot to the touch, and sore, but he didn’t remember getting bitten by anything. When the rash didn’t go away in about a week, he walked three houses over to visit a friend of the family, a retired doctor who once worked in the emergency room at a regional hospital.
Dr. Dave, as we call him, suggested watchful waiting, particularly as my father has a history of intense local reactions—swelling and tenderness—to insect and arachnid bites. But when the rash didn’t get any better over the next couple of weeks, Dr. Dave told my father to see a physician.
My father’s personal physician was unsure what he was looking at, so he conducted a physical, ordered blood tests, and gave my father a prescription for amoxicillin, a broad-spectrum antibiotic. If the tests came up empty, my father could potentially stop the amoxicillin, but after nearly a month with him having a mysterious rash, his doctor wanted to make sure that if there was a localized infection it wouldn’t spread elsewhere in my father’s body. “A few days later I got a call,” says my father. “And they said, ‘The tests came back—you have Lyme.’ ”
Like many of the 20,000 people that state health departments report to the Centers for Disease Control and Prevention as confirmed Lyme-disease cases each year, my father was surprised, and then afraid. Wasn’t Lyme an insidious pathogen that is nearly impossible for some people to beat? Doesn’t it attack the brain and body, resulting in arthritis, heart disease, and even cognitive problems? Would he be stuck with persistent Lyme disease for the rest of his life?
Though there are reports of diseases similar to Lyme going back hundreds, if not thousands, of years, Lyme disease in America was first formally investigated in 1975 when Dr. Allen Steere, then a resident at Yale University, examined what looked like a mysterious cluster of juvenile-rheumatoid-arthritis cases in Lyme, Conn. Steere suspected an arthropod vector, and his suspicion was confirmed in the early 1980s when the entomologist Willy Burgdorfer discovered, in the digestive system of a tick, the pathogen that caused what had recently been dubbed “Lyme arthritis”—a corkscrew-shaped bacterium, or spirochete, named Borrelia burgdorferi.
In the intervening decades—American Lyme disease turns 35 this year—we’ve learned a lot. Lyme disease in America is caused by the B. burgdorferi bacterium, which is mainly transmitted by black-legged ticks (Ixodes scapularis in the Northeast, Ixodes pacificus in the West) from a natural reservoir found in small rodents. The ticks are most likely to transmit the offending pathogen when they are in the nymph stage—at which point they are about as small as the period in this sentence—but need to be attached for at least 24 hours, if not longer, to cause Lyme disease. (Which is why it is so important to quickly remove any ticks you find on yourself.)
In those who are bitten, one of the commonest early signs of Lyme disease is an expanding—sometimes bull’s-eye-shaped—rash called erythema chronicum migrans (EM). The rash, which occurs in most but not all people infected with the Lyme spirochete, may be accompanied by flulike symptoms.
Over days to weeks, the second stage of the disease may show early disseminated symptoms as the bacteria spread through the body: migrating muscle and joint pain, rashes not associated with the location of the tick bite, dizziness, heart palpitations, and in some people neurological problems like one side of the face becoming droopy.
If left untreated for months or longer, some proportion of those infected end up with significant cognitive, neurological, and cardiac problems. Not everyone gets this sick; in fact, it’s possible in some cases for—though not safe to rely on—the body’s immune system to fight off Lyme disease on its own.
The standard treatment for Lyme, recommended by the Infectious Disease Society of America, is oral amoxicillin or doxycycline for up to four weeks (with rarer cases requiring IV antibiotics or a repeated course), so my father felt he had the right prescription, but he still had questions about how long he needed to continue taking the medicine, and how to know if the antibiotic therapy was effective once completed. In his effort to get answers to these questions, he scheduled a consultation with Dr. William Swiggard, an infectious-disease specialist at Cooley Dickinson Hospital in Northampton, Mass.
“I looked at your father’s blood tests, talked to him about the past weeks and months, and checked for objective signs,” Swiggard told me. “And I could tell pretty quickly that your father did not have active Lyme disease.”
But hadn’t my father tested positive for two types of Lyme-disease antibodies? And didn’t he have irritation at his wrist? And come to think of it, didn’t he sometimes misplace words or feel fatigued midway through the day?
“Yes,” said Swiggard, “But it’s all in the story, and Lyme disease is diagnosed based on clinical findings. Your father didn’t have physical signs consistent with either early or late Lyme disease.” He explained that my father hadn’t seen a tick (which would be visible on the back of his wrist for more than 24 hours); the wrist is an unlikely place for a black-legged-tick bite; my father hadn’t had flulike symptoms, or arthritic symptoms, or marked fatigue or memory issues abnormal for a 65-year-old; and, aside from the positive test results, his complete blood-count results were not consistent with an active infection.
Swiggard explained that the Western Blot test, which my father received, can check for the presence of Lyme-disease antibodies created by the immune system—but not Lyme disease itself. A positive test doesn’t necessarily differentiate between an active, ongoing infection and an old infection that has already been cleared by the patient’s immune system, or by antibiotics given for some other illness. “In some cases,” said Swiggard, “we think antibodies for Lyme disease, even the short-term IgM type, can last for 10 to 20 years in the absence of active infection.”
But what about chronic Lyme disease? Couldn’t it lie dormant and pop up again? Wasn’t it possible that Lyme-related arthritic, cognitive, and heart problems were waiting down the line?
“There is overwhelming scientific evidence that there is no such thing as chronic Lyme disease,” says Dr. Eugene Shapiro, director of education at the Yale Center for Clinical Investigation and professor of pediatrics, epidemiology, and public health and investigative medicine at the Yale School of Medicine. “In many instances, people have symptoms and find a so-called LLMD”—or Lyme literate doctor—“to say they have chronic Lyme disease” when they don’t.
In “extremely rare” cases a person may continue to suffer from autoimmune arthritis after treatment for Lyme disease, says Shapiro, “but this is not the same thing as people having active or ‘chronic’ Lyme disease. They actually have arthritis, like a big swollen knee. They have a certain genetic predisposition.”
Allen Steere, who first investigated Lyme disease and is now a physician at Massachusetts General Hospital and professor of medicine at Harvard Medical School, says that “there is a nuance that is often missed by the media. The question is if there is such a thing as persistent infection after antibiotic therapy,” not if there is persistent infection in those who haven’t been treated. The former, he says, is not supported by any controlled studies.
That’s not to imply that the very vocal group of patients who insist they are suffering even after antibiotic therapy—sometimes in the face of multiple negative tests, and no objective, physical signs of infection—are lying about persistent symptoms, says Steere. “I think these people have symptoms—they are real and can be very disabling. But the ideology that their symptoms are due to persistent Borrelia burgdorferi infection that cannot be treated with standard antibiotics is wrong.”
Dr. Brian Fallon, director of the Lyme and Tick-Borne Disease Research Center at Columbia University Medical Center and a professor of psychiatry, takes a softer approach to declaring chronic Lyme disease a misnomer. “If you’re coming from the perspective of a patient who was bitten by a tick, had EM, or Lyme meningitis, got better with antibiotics, and then the symptoms came back six months after treatment, they prefer to use [‘chronic Lyme disease’] because they have chronic symptoms as a result of Lyme disease. But that doesn’t mean they have an active infection.”
But there’s more to this than a semantic argument: some patients, and so-called LLMDs, are turning to open-ended courses of antibiotic therapy (or alternative treatments), often administered via IV, that can go on for months or years. “It’s expensive, encourages bacterial resistance in the individual and community, and can cause side effects that in some cases can be fatal,” says Swiggard.
Such an approach may also prevent patients from being treated for the disease they now have—such as arthritis. Or worse, it may compel them to focus on Lyme disease when in fact the symptoms may point to another cause entirely, such as multiple sclerosis, lupus, chronic-fatigue syndrome, or another tick-borne illness like HGA or babesiosis. After all, Lyme disease has been dubbed the new “great imitator” because of the disparate range of symptoms associated with it.
But it’s a difficult problem to find a solution for, because there’s no reliable test available to the public that can determine whether a course of antibiotic treatment has been effective, and it has been demonstrated that the sequelae of Lyme disease (such as arthritis) can outlast infection itself. A correct diagnosis depends very much on the skill and experience of one’s doctor.
Even my father, an intelligent, highly rational person, has grappled with the sorts of doubts associated with a potential Lyme-disease diagnosis and positive Western Blot results—despite hearing that he doesn’t have an active infection with the spirochete that causes the disease.
He says he’s finally feeling more confident that he’s fine, but he still wonders about the odd ache here, or the forgotten word there, or a spell of afternoon fatigue. Even after a standard course of antibiotic therapy, it’s been a gradual process for him to ignore the potentially ill-informed anecdotes encountered online. “The more you read about it,” he says, “the easier it is to fool yourself into thinking you have every symptom.”
The best treatment for that condition, says Shapiro, is a surgical one: an “Internet-ectomy.”