Sue Gray, 59, has been sick half her life. But it took two decades to confirm why.
[time-brightcove not-tgx=”true”]
When Gray was 30 and living with her then-husband in the middle of the woods in upstate New York, she felt 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 the faultiness of Lyme tests, 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 half a million people in the U.S. are diagnosed with Lyme disease 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 treatment fails for up to 10% of patients, 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 small 2022 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.)
Read More: We Used to Have a Lyme Disease Vaccine. Are We Ready to Bring One Back?
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 acceptance of Long COVID—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 expects to grant 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) last year awarded $3 million in first-year grants 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 cases have exploded in recent decades, as climate change and real-estate expansion push Americans into closer contact with the blacklegged ticks that carry Lyme bacterium. In the 1980s, the CDC received about 1,500 annual reports of Lyme disease. 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% of people don’t, 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. Standard Lyme tests 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 federal health officials caution that they may not be reliable since they haven’t gone through the full regulatory review process.
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. False negatives are common, especially when people are tested early in their infections, 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.
Read More: Ticks Carry More Diseases Than Lyme. Here’s What You Need to Know
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 genes, health histories, and microbiomes 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 diagnoses, saying they’re based on quack tests. “Every time I go to the doctor, I’m worried,” he says.
Read More: Scientists Have Identified the Lyme Disease Genes Responsible for Severe Symptoms
NIAID has called for more research on Lyme diagnostics, and some scientists are working toward innovations like at-home tests, urine tests, and better antibody tests. In addition, Akiko Iwasaki, an immunobiologist at the Yale University School of Medicine, is working with Tal to map an immune profile of chronic Lyme, analyzing patients’ blood and saliva samples to search for biological markers that may differentiate people who have long-term symptoms from those who don’t. And Dr. John Aucott, director of the Johns Hopkins Lyme Disease Clinical Research Center, is studying whether functional MRIs can detect changes in the brains of PTLDS patients, relative to healthy people.
“I have spent the last 15 years trying to prove that [chronic Lyme] is real,” Aucott says. Only when the medical and scientific establishments believe that it is, he says, will anyone be willing to fund major treatment trials.
Treatment for both acute and chronic Lyme is a puzzle. For most patients who are accurately diagnosed with acute Lyme, a course of antibiotics (often doxycycline) wipes out the infection. But about 10% of the time, that approach doesn’t work, leaving a small-but-significant minority of patients with PTLDS. Tal is studying the immune systems of people for whom treatment works versus those for whom it doesn’t, in hopes of predicting who will go on to develop chronic symptoms so that doctors could intervene early with immune-system-altering drugs and better monitor patients’ recoveries.
But right now, doctors don’t know why treatment sometimes fails, or for whom it will; some outright reject the idea that treatments don’t always work. “Instead of admitting that it fails 10% of the time, we have just been sweeping this under the rug and calling these people crazy,” Tal says.
But at least PTLDS is a CDC-recognized diagnosis. The term “chronic Lyme” is even less accepted within the medical establishment. The Infectious Disease Society of America has been sued by patients for rejecting it as a legitimate medical diagnosis, allegedly leading to insurance-coverage denials. (A judge dismissed those claims in 2021, but patients have continued to fight to move the case forward.) The CDC discourages use of the term “chronic Lyme” because, as the agency says, “it implies that prolonged symptoms are caused by an ongoing bacterial infection when, in fact, the cause is not currently known.”
It’s true that researchers don’t know what causes post-Lyme symptoms. It’s possible that bacterial fragments stubbornly linger in the body, either causing ongoing infection or interacting with other pathogens, Tal says. Or, she says, it’s possible that the bacterium causes the immune system to attack itself, or triggers another kind of abnormal immune response that outlasts the initial infection. But no one really knows, because a relatively small number of scientists have researched Lyme’s chronic symptoms over the past several decades, Aucott says.
However, there are signs of progress. Columbia University in 2021 launched a Lyme-focused treatment clinic, and Yale followed suit last year with a new research center dedicated to post-infectious illnesses including chronic Lyme. The NIH’s PTLDS grants have also brought new scientists into the field, Aucott says.
Patient advocates have also been effective at pushing for change and raising awareness, including by appearing in recent documentaries including The Quiet Epidemic and I’m Not Crazy, I’m Sick, which came out in 2023. In April, Keys, director of The Quiet Epidemic, met with lawmakers on Capitol Hill to call for a public-awareness campaign and more research funding related to Lyme, winning support from representatives in states including Massachusetts, New Jersey, Maryland, Pennsylvania, and Connecticut. “The research is finally happening, exploring the questions that patients have been asking all along,” Keys says.
That wave of support stems in part from a newfound respect for post-infectious illnesses in the wake of the COVID-19 pandemic, she says. “People have had to reckon with the fact that we’re living amongst infectious diseases and anyone can be impacted,” Keys says.
Read More: A Hotter World Means More Disease Outbreaks in Our Future
An estimated 7% of U.S. adults have chronic post-COVID-19 symptoms known as Long COVID—a patient group too large to ignore and one that has granted newfound credibility to people with other long-discounted post-infectious illnesses, such as myalgic encephalomyelitis/chronic fatigue syndrome and chronic Lyme. Long COVID is also subject to many of the same limitations and knowledge gaps as chronic Lyme—there’s no agreed-upon biomarker for diagnosing it, no clear reason why some people have long-term symptoms and others don’t, and a significant group of patients who never tested positive for acute COVID-19—but it has become an accepted diagnosis anyway, with more than $1 billion of federal research funding poured into it.
“The chronic Lyme community is trying to grasp onto what’s happening right now with Long COVID and hold on for dear life,” Tal says. “If Long COVID is real, and Long COVID looks [almost] exactly like chronic Lyme, then do we need to go back and reassess some of our assumptions about chronic Lyme?”
There have already been promising research breakthroughs. Timothy Haystead, a professor of pharmacology at the Duke University School of Medicine, is working on an approach borrowed from oncology that he describes as a “theranostic,” combining therapy and diagnostics. Haystead’s team is studying a cancer drug that targets proteins in the Borrelia bacterium, enters its cells, and then destroys the bacterium from within, all while sparing healthy surrounding tissue. “The same molecule that you use to detect the disease is also used to kill it,” he explains.
Haystead is hopeful that clinical trials in mammals, and then humans, will move forward within the next few years. Another research team, this one at the University of Massachusetts, Amherst, is also testing cancer drugs for use against Lyme bacteria, following some preliminary but promising findings in lab studies.
Meanwhile, at Northeastern, Lewis is studying an “old, abandoned antibiotic” that’s “lousy” against most pathogens, but in animal trials appears to be “exceptionally potent” against Borrelia. Lewis’ team partnered with a drug-development company that recently began preliminary human trials of the antibiotic. Research will start with patients who have acute Lyme, and if the drug works well in this population and cuts down on the percentage of people who develop lingering symptoms, it could feasibly then be tested among people who already have chronic illness, Lewis says.
Other labs, including one at Stanford University, are also taking a second look at existing antibiotics, searching for answers in medications that are already approved and available—and, thus, that could relatively quickly make it to patients if they prove effective.
Still, much more research is required before doctors get anywhere close to prescribing these potential therapies to chronic Lyme patients. The road is long, but Lewis says it’s important to look for new treatments, even as other researchers continue to study the root causes and underlying biology of chronic Lyme. Believing it exists is only the first battle.
Right now, a diagnosis may do more to soothe the mind than the body. Shivani, 37, has lived much of much of her life with symptoms—ranging from physical tics to gastrointestinal issues—that she thinks were likely related to Lyme disease contracted while growing up on Long Island. Then, at age 33, a tick bite preceded a “neurological explosion” that made her body and brain feel like they were on fire and resulted in hallucinations, rage, and insomnia. Shivani, who asked to use only her first name, tested negative for Lyme using the CDC-recommended testing protocol but positive on a test from a private laboratory—a result that she says some doctors still reject.
The diagnosis offered some clarity but little else. Shivani says she initially felt some improvement after taking antibiotics, but the results didn’t stick. None of the mainstream treatments her doctors have prescribed have made a meaningful, lasting difference—and some, she says, have been actively harmful, including a prolonged course of benzodiazepines that she says caused cognitive injury and antibiotics that she says made it nearly impossible to eat. Too sick to work or live independently, she has relied heavily on the care of her parents and friends.
Facing massive pain and little hope, Shivani says she has often felt suicidal. She remains alive in large part, she says, due to her spiritual beliefs and her deep-seated sense that “there’s something to fight for,” whether that’s sharing her story, serving as a voice for those who are suffering, or simply getting better so she can spread love and positivity in the years to come.
Moving forward isn’t easy; sometimes she wonders how long she can stand the suffering she faces every day. But, she says, “I’m pretty undefeatable, when it comes down to it.”
Jiatong Lu is a mixed-media artist and photographer based in New York. Her work focuses on exploring individual and collective dilemmas, delving deep into the connections between personal and shared experiences, societal culture, and social policies.
After being diagnosed with neurological Lyme disease in 2021, Jiatong Lu started her documentary project “Nowhere Land,” photographs from which are included throughout this piece. Through intimate narratives, the project captures the silent suffering, daily battles, and emotional isolation endured by individuals living with this invisible and debilitating condition, aiming to shed light on the plights encountered by numerous chronic Lyme disease patients.
Leave a comment
