Sue Gray, 59, has been sick for half her life. But it took two decades to confirm why.
When Gray was 30 and living with her then-husband in the middle of the woods in upstate New York, she found a tick on her scalp one day after taking a shower. Her former husband plucked it off with tweezers, and “that was the end of that—for that day,” Gray says.
Over the next few months, however, Gray’s health began to decline. She suffered frequent respiratory infections and developed a twitch in her eye. Then, a few weeks after the twitch began, she felt the sensation of ants crawling up and down her legs, even though nothing was there. That made Gray nervous enough to book an appointment with a neurologist. Remembering her recent tick bite, Gray asked to be tested for Lyme disease—but the results came back negative. Looking back, knowing what she does now about persistent symptoms, she wishes she’d been retested. But her doctor just sent her on her way.
Over the next two decades, Gray’s neurological issues continued and she progressively developed new symptoms: numbness and tingling in her back, chronic pain, anxiety, and an uncontrollable rage that made her feel like an entirely different person. She knew something was seriously wrong, but she didn’t know what. “I was scared to death,” she says.
In 2007, Gray was diagnosed with multiple sclerosis. She was stable for a while, but in 2014, her symptoms took a turn for the worse and she was hospitalized. Doctors ran a battery of tests, and one for Lyme came back positive, confirming Gray’s initial hunch from decades earlier. Between scouring the internet for information and visiting countless doctors, getting to that point felt like having an unpaid full-time job for most of her adult life. “It’s been hell,” Gray says.
Thousands, if not millions, of people in the U.S. have lived through versions of that hell. Nearly 10% every year after being bitten by ticks typically carrying the bacteria Borrelia burgdorferi. In its acute phase, Lyme disease causes symptoms including fatigue, headaches, and muscle aches. As the infection proliferates in the body, it can spiral into arthritis, chronic pain, heart palpitations, inflammation of the brain, neurological issues, and more.
Most people who are treated with a two- to four-week course of antibiotics get better. But the U.S. Centers for Disease Control and Prevention (CDC) estimates that between 10-20%, who develop what is officially known as post-treatment Lyme disease syndrome (PTLDS), a lingering condition that comes with symptoms like profound fatigue, body aches, and cognitive impairment. A Yale study put the number a little higher, finding that about 14% of patients properly treated for Lyme experienced prolonged symptoms. And those figures don’t even include people like Gray, who were either never treated for acute Lyme or treated too late. (Many patients prefer the term “chronic Lyme disease,” which is more inclusive of people who were treated late, inadequately, or not at all.)
For years, much of the medical establishment has downplayed or outright dismissed the idea of chronic Lyme disease, for which there is no definitive diagnostic test or treatment. Kim Lewis, a biology professor at Northeastern University who researches Lyme disease, thinks that’s because the medical system isn’t comfortable with uncertainty. “It is much easier, psychologically, to conclude that chronic Lyme doesn’t exist” than to say that it does but no one knows what to do about it, Lewis says. “The best way to solve a problem is to announce that it doesn’t exist.”
Over the last few years, though, there’s been a renaissance in Lyme research. Buoyed by widespread recognition of similar illnesses—which similarly results in chronic symptoms after what “should” be a short-lived illness—the medical establishment is looking anew at post-Lyme complications. The U.S. National Institutes of Health allocated more than $50 million for the study of Lyme disease this year, doubling its 2015 budget for the condition, and the U.S. National Institute of Allergy and Infectious Diseases (NIAID) issued calls for PTLDS research. As interest in the condition grows, scientists across the country have reported promising findings related to diagnosis and treatment of chronic Lyme, bringing patients closer to mainstream acceptance—and hopefully, eventually, a cure.
“Lyme impacts so many people, and it has never had its moment in the spotlight,” says Lindsay Keys, a patient advocate who directed The Quiet Epidemic, a 2022 documentary on the subject. “I am optimistic that this could be chronic Lyme’s moment.”
First identified in Lyme, Conn., in 1975, Lyme disease is the most common vector-borne illness in the United States, as climate change and real-estate expansion push Americans into closer contact with the blacklegged ticks that carry Lyme bacterium. In the 1980s, Lyme disease was rare. Now, nearly half a million people are diagnosed annually—and that’s probably an undercount.
Lyme disease is notoriously difficult to diagnose. While many people develop a telltale bullseye-shaped rash after being bitten by an infected tick, up to 30% may not develop a rash, and others may never notice a rash that forms on a hard-to-see body part. Other early Lyme symptoms—like headaches, muscle aches, and fatigue—can be easily mistaken for those of different conditions.
Tests are also limited in what they can detect. They look for antibodies that the body produces in response to an infection, rather than the bacterium itself. Some companies sell tests using alternative diagnostic methods, and these are widely used among patients and “Lyme-literate” doctors, but they are not approved by the FDA since they have not been clinically validated.
It’s hard to blame patients for turning to these methods, when approved tests are not 100% accurate even during the acute phase of a Lyme illness. Sensitivity is especially low during early infection, since it can take weeks for the body to mount an antibody response strong enough to register on tests. But the situation is even more complex when symptoms have dragged on for months or years, since someone may have antibodies long after an acute infection is gone. “The antibody tests that we’re using currently cannot tell the difference between an active infection and a long-time-ago exposure,” says Michal Tal, an immunoengineer at the Massachusetts Institute of Technology who studies Lyme.
At the moment, there’s no other objective biomarker that clinicians can use to tell whether someone’s ongoing symptoms are related to Lyme. Researchers have found some clues, including differences in the microbiome, metabolome, and immune profiles of people who develop chronic symptoms relative to those who don’t, but there is not yet a surefire way to detect the condition, which leads some doctors to conclude that it’s not real. Many patients also report symptoms that fall outside what the CDC recognizes as signs of PTLDS—namely fatigue, body aches, and difficulty thinking—which also complicates the diagnostic process.
Cody Mode, 30, learned that the hard way. He’s lived with symptoms including chronic pain, insomnia, brain fog, and sensory and temperature-regulation issues since he was a kid—in retrospect, he believes, tracing back to tick bites he sustained as a child in Alaska. These issues went unexplained for years; he recalls one doctor shaking him by the shoulders, shouting that everything was in his head. But finally, in his mid-twenties, he was diagnosed with Lyme on a test from a private laboratory that he took after moving to New England with his family.
Today, Mode’s wife, Rose, and two of his five children have also been diagnosed. The other three kids have Lyme-like symptoms, but haven’t officially been diagnosed.
The Modes aren’t able to work full-time jobs because their symptoms are unpredictable and can leave them unable to function. They also decided to homeschool their children, since the kids were missing so many classes due to health issues. But despite the massive toll Lyme has taken on his family, Mode says they regularly encounter physicians who don’t believe there’s anything wrong with them and wave off their struggles as psychological or stress-related.
