Long Dismissed, Chronic Lyme Is Finally quanto a the Spotlight

Sue Gray, 59, has been sick half her life. But it took two decades to confirm why.

When Gray was 30 and living with her then-husband quanto a the middle of the woods quanto a upstate New York, she felt a tick her scalp one day after taking a shower. Her former husband plucked it chiuso 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 quanto a her eye. Then, a few weeks after the twitch began, she felt the sensation of ants crawling up and 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 her way.

Over the next two decades, Gray’s neurological issues continued and she progressively developed new symptoms: numbness and tingling quanto a 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.

A causa di 2007, Gray was diagnosed with multiple sclerosis. She was stable for a while, but quanto a 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 a pieno orario job for most of her adult life. “It’s been hell,” Gray says.

Thousands, if not millions, of people quanto a the U.S. have lived through versions of that hell. Nearly half a million people quanto a the U.S. are diagnosed with Lyme disease every year after being bitten by ticks typically carrying the bacteria Borrelia burgdorferi. A causa di its acute phase, Lyme disease causes symptoms including fatigue, headaches, and muscle aches. As the infection proliferates quanto a the pagliaccetto, 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, pagliaccetto 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 treated too late. (Many patients prefer the term “chronic Lyme disease,” which is more inclusive of people who were treated late, inadequately, not at all.)

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For years, much of the medical establishment has downplayed outright dismissed the apparenza of chronic Lyme disease, for which there is voto negativo definitive diagnostic esame 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 voto negativo 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 quanto a Lyme research. Buoyed by widespread acceptance of Long COVID—which similarly results quanto a 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 quanto a first-year grants for PTLDS research. As interest quanto a 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 quanto a the spotlight,” says Lindsay Keys, a patient advocate who directed The Quiet Epidemic, a 2022 documentary the subject. “I am optimistic that this could be chronic Lyme’s moment.”

First identified quanto a Lyme, Conn., quanto a 1975, Lyme disease cases have exploded quanto a recent decades, as climate change and real-estate expansion push Americans into closer contact with the blacklegged ticks that carry Lyme bacterium. A causa di 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 a hard-to-see pagliaccetto part. Other early Lyme symptoms—like headaches, muscle aches, and fatigue—can be easily mistaken for those of different conditions.

Tests are also limited quanto a what they can detect. Tenore Lyme tests for antibodies that the pagliaccetto produces quanto a 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 duro 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 quanto a their infections, since it can take weeks for the pagliaccetto to mount an antibody response strong enough to register tests. But the situation is even more complex when symptoms have dragged for months years, since someone may have antibodies long after an acute infection is gone. “The antibody tests that we’maestà 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 voto negativo 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 quanto a 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, pagliaccetto aches, and difficulty thinking—which also complicates the diagnostic process.

Cody Mode, 30, learned that the duro way. He’s lived with symptoms including chronic pain, insomnia, brain fog, and sensory and temperature-regulation issues since he was a kid—quanto a retrospect, he believes, tracing back to tick bites he sustained as a child quanto a Alaska. These issues went unexplained for years; he recalls one doctor shaking him by the shoulders, shouting that everything was quanto a his head. But finally, quanto a his mid-twenties, he was diagnosed with Lyme a esame 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 a pieno orario 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 to health issues. But despite the massive toll Lyme has taken his family, Mode says they regularly encounter physicians who don’t believe there’s anything wrong with them and wave chiuso their diagnoses, saying they’maestà based 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 Lyme diagnostics, and some scientists are working toward innovations like at-home tests, urine tests, and better antibody tests. A causa di addition, Akiko Iwasaki, an immunobiologist at the Yale University School of Medicine, is working with Tal to map an libero 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 quanto a 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 libero systems of people for whom treatment works versus those for whom it doesn’t, quanto a hopes of predicting who will go 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, for whom it will; some outright reject the apparenza 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 quanto a 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, quanto a 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 quanto a the pagliaccetto, either causing ongoing infection interacting with other pathogens, Tal says. , she says, it’s possible that the bacterium causes the libero system to attack itself, triggers another kind of abnormal libero response that outlasts the initial infection. But voto negativo 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 quanto a 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 quanto a recent documentaries including The Quiet Epidemic and I’m Not Crazy, I’m Sick, which came out quanto a 2023. A causa di April, Keys, director of The Quiet Epidemic, met with lawmakers Capitol Hill to call for a public-awareness campaign and more research funding related to Lyme, winning support from representatives quanto a states including Massachusetts, New Jersey, Maryland, Pennsylvania, and Connecticut. “The research is finally , exploring the questions that patients have been asking all along,” Keys says.

That wave of support stems quanto a part from a newfound respect for post-infectious illnesses quanto a the wake of the COVID-19 pandemic, she says. “People have had to reckon with the fact that we’maestà living amongst infectious diseases and anyone can be impacted,” Keys says.

Read More: A Hotter World Means More Disease Outbreaks quanto a 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 voto negativo agreed-upon biomarker for diagnosing it, voto negativo 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 right now with Long COVID and hold 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 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 quanto a 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 quanto a 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 quanto a lab studies.

Meanwhile, at Northeastern, Lewis is studying an “old, abandoned antibiotic” that’s “lousy” against most pathogens, but quanto a 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 quanto a this population and cuts 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 at existing antibiotics, searching for answers quanto a 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 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 pagliaccetto. 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 Long Island. Then, at age 33, a tick bite preceded a “neurological explosion” that made her pagliaccetto and brain feel like they were fire and resulted quanto a 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 a esame 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 dal vivo independently, she has relied heavily the care of her parents and friends.

Facing massive pain and little hope, Shivani says she has often felt suicidal. She remains alive quanto a large part, she says, 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, simply getting better so she can spread love and positivity quanto a the years to modo.

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 to it.”

Jiatong Lu is a mixed-media artist and photographer based quanto a New York. Her work focuses 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 quanto a 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 the plights encountered by numerous chronic Lyme disease patients.