The history of Lyme disease in the United States is as eerie as it is complicated. In 1975, something strange started happening to people in the town of Lyme, Connecticut. Children and adults reported skin rashes, swollen joints, severe fatigue and even partial paralysis. Health officials suspected the disease was caused by a biting insect due to the frequency of infections appearing in the summer months and the locations of the victims. “Cases tended to occur among persons living near heavily wooded and sparsely settled areas,” Connecticut’s commissioner of health wrote in a letter to state health directors a year after the initial outbreak. “On some roads as many as one in 10 children were affected.”
Despite health officials’ suspicions, the first group of Lyme disease sufferers went years without concrete answers about their illness. Finally, in 1981, a scientist named Willy Burgdorfer discovered that Lyme was caused by bacteria carried in mice and deer and transmitted by deer ticks. The spirochete bacteria in question, borrelia burgdorferi, was named in his honor. Once it was established that Lyme disease was a bacterial infection, the course of treatment seemed obvious: antibiotics. Doctors began treating patients with a six- or 12-week dose. Some people got better, but not all of them. Cut to 36 years later, and not much has changed.
When patients go to the doctor immediately after infection, most of them (about 80 percent) fully recover. For the people who don’t get immediate treatment or don’t respond well to the antibiotics, the prognosis can be much more grim. In these patients, a range of horrific symptoms – muscle aches, fatigue, fever, malaise, joint pain, digestive problems, foggy brain, anxiety, headaches, twitching, memory loss, seizures, depression and paranoia, among many, many others – can persist for a lifetime. The split is so dramatic that Lyme researchers and patient advocates began differentiating between two types of Lyme disease: acute and chronic.
“Acute Lyme refers to the disease that occurs right after initial exposure. That’s when people show up with a fever, muscle pain, rash, flu-like symptoms,” says Mark Soloski, co-director of research at Johns Hopkins’ Lyme Disease Research Center. Post-Treatment Lyme Disease Syndrome, more commonly known as “chronic Lyme,” is different. “We define it as a set of persistent symptoms that are happening six to 12 months after their acute disease. These are folks who have not only symptoms, but loss of functioning. In simple terms, you can’t get out of bed in the morning.”
Of the celebrities who have gone public with their Lyme diagnosis, most fall into the chronic Lyme category: persistent, debilitating symptoms that last for years and are extremely difficult to treat effectively, let alone cure. Still, the CDC has been hesitant to embrace the popular narrative about chronic Lyme. “There’s been some antagonism between the Center for Disease Control and advocacy groups,” says Levi, “particularly in regards to chronic Lyme and if it even exists.”
According to a CDC spokesperson, “the term ‘chronic Lyme disease’ is confusing and misleading because it is used to describe patients with and without Lyme disease.” Instead, the CDC makes a distinction between Lyme disease and Post-Treatment Lyme Disease Syndrome (PTLDS), which they describe as “a condition of persistent symptoms that exists in some patients with Lyme disease after treatment.” In other words, if you were bitten by a tick, exhibited symptoms of Lyme disease (including the telltale bull’s-eye rash), received treatment, and didn’t get better, your condition would match the CDC’s description of PTLDS. If you went to the doctor reporting lingering symptoms consistent with Lyme (like fatigue and muscle aches) but hadn’t been diagnosed with Lyme in the past, you could be diagnosed with “chronic Lyme,” and that’s what the CDC takes issue with. Says the spokesperson: “While the term [chronic Lyme] is sometimes used to describe patients with PTLDS, in many occasions it has been used to describe symptoms in people who have no evidence of a current or past infection with Lyme disease. People who have an illness with symptoms compatible with Lyme disease need to be diagnosed correctly and treated properly as quickly as possible. We want people to get the right diagnosis and the appropriate care.”
Unfortunately, getting the right diagnosis can be extremely difficult. Borrelia burgdorferi is nearly impossible to detect in the bloodstream. Without evidence of a tick bite or rash in the days following initial infection, there is still not a reliable diagnostic test for Lyme. The CDC’s definition of PTLDS hinges on a Lyme diagnosis – and for good reason – but without a direct way to test for infection, many patients suffering from lingering Lyme symptoms are left in the medical lurch.
The CDC counts “the need for improved diagnostic tests” among its goals for addressing the growing Lyme disease problem, but researchers on the ground say the government has been loath to support its promises with resources. “It’s a difficult thing to study,” says Levi. “It takes a lot of money and there’s very little money for Lyme disease research, which means there’s a lot of competition. You’ve got to keep money flowing for researchers to remain engaged. We need more field studies, more data, but who’s going to fund a 10-year field project?”
The answer to that question may lie at the curious intersection of celebrity and Lyme disease. Celebrities using their platform to raise funds and awareness for Lyme is “essential,” says Scott Santarella, CEO of the Global Lyme Alliance, a private nonprofit that has partnered with Yolanda and Bella Hadid, Ally Hilfiger and Rob Thomas, whose wife Marisol suffers from Lyme, for fundraising galas, auctions and education initiatives. With government funding for Lyme research nearly nonexistent, private organizations like the GLA are tasked with raising massive amounts of money to fill the gaps. Famous people and their wealthy social circles are a crucial part of that equation. Kelly Osbourne may have been hesitant to join the ranks of those suffering from a “trendy” disease, but there are many people working hard around the clock to keep Lyme culturally relevant.
“We are a society built around celebrity and entertainment,” says Santarella. “When you have someone like Yolanda or Bella Hadid out there talking about the disease and putting a face to it, you tend to have a bump up in understanding and acceptance. As people become more aware of the disease and become more connected to people who have the disease, fundraising increases.”
Glamorous spokespeople get more press, and lavish fundraisers with A-list red carpets bring in serious money, but relying on celebrities to tell the story of a complex disease has its downsides. Most of the celebrities who have been vocal about their chronic Lyme disease diagnoses (or at least the voices that have been most amplified) are rich white women. With public perception of the disease still relatively malleable, organizations like the GLA must be careful not to pigeonhole chronic Lyme as a plight of the wealthy. “We’re incredibly conscious of the messaging around it and try to work with individuals to tell their story in a way that people can relate,” says Santarella. “We take great pains and strategic thought in how we present things and promote things.”
No matter how hard celebrities work to be relatable, the fact is their experiences don’t accurately portray the reality of a disease that’s spreading rapidly and affecting all demographics. For every Avril, Bella, and Kelly, there are thousands of Lyme sufferers who don’t have access to basic healthcare, let alone the financial means to take months off work and fly to Europe to try new treatments.
“What I say to that is when you have people who have the means to get themselves better and they can’t, they become a loud voice for change,” says Santarella. “At the end of the day, many will benefit from wealthy people who can’t get themselves or their children better. Anyone and everyone can get Lyme. No one is immune. If people knew that, they’d be much more willing to accept and support the efforts of people who are suffering from it and organizations like ours trying to solve the problem.”
Ask researchers for their outlook on the future of Lyme, and you’ll get a wide array of answers, ranging from “dire” to “cautious optimism.” Most agree, however, that many more people are going to get sick before things get better.
The recent surge of Lyme cases and this summer’s predicted outbreak represent a confluence of factors, many of which are manmade. Forest fragmentation is often cited as a primary reason. “A lot of houses and schools and athletic facilities are being built in places that are surrounded by woods,” says Soloski. “That interface between grassy areas, like a manicured lawn, and the forest is a great tick habitat.” As suburban neighborhoods continue to creep into rural environments, the increased mingling of ticks and humans means more Lyme disease.
Fragmentation also interrupts fragile ecosystems, says Levi, which “makes it difficult for some of the predators of these [Lyme-carrying] animals to persist.” Cougar, bear and bobcat numbers have plummeted, while deer and rodent populations have exploded. “The host species we most care about are rodents and deer,” says Levi. “That’s what we need to keep at low levels to see fewer ticks.” In fact, the most ominous predictor of this summer’s imminent outbreak is the widespread mouse infestation that struck the Hudson River Valley last year. Mice are such effective Lyme carriers that scientists have been able to accurately forecast Lyme cases by tracking their populations.
And of course, climate change plays a role. “Any insect-borne disease is very sensitive to climate conditions,” says Jonathan Patz, director of the Global Health Institute University of Wisconsin. “Warmer temperatures speed up the development of tick larvae and nymphs, and that can influence transmission dynamics. Modeling studies of climate change effects on Lyme disease show a northward expansion of the disease,” says Patz. “Lyme is already moving north into Canada.”
While President Trump and his closest advisors maintain that climate change is a myth, and science and research funding face massive cuts in the federal budget, people in the trenches of Lyme disease research struggle to garner a sense of urgency about their work. “Because it’s treatable by antibiotics and it doesn’t kill you, there’s a sense that it’s not as big as a problem as the people on the ground believe it is,” says Levi. “Nobody’s treating this like a really big problem.”
Meanwhile, advocacy groups like the GLA will continue raising funds and awareness through every possible avenue. Despite the obstacles, advancements are being made (including promising immunotherapy research), and Santarella says the disease’s current place in pop culture is an achievement in itself. “It’s a good thing in that people are aware, but it’s much more of an epidemic than we realized. Lyme is very real and very scary – and not going away anytime soon.”