Does chronic Lyme disease exist? Thats the question that haunts The Quiet Epidemic, Lindsay Keys and Winslow Crane-Murdochs worthy and provocative documentary about the highly controversial syndrome. (The movie premieres on VOD on May 16.) The filmmakers argue, with unflinching advocacy and some very good reporting, that chronic Lyme disease most definitely exists. Among other things, The Quiet Epidemic is a portrait of individuals whose lives have been ravaged by it. Yet the movie, in its doggedly opinionated way, does acknowledge the profundity of the debate. The medical establishment, led by the Centers for Disease Control and the National Institutes of Health, has long held the position one it maintains to this day that Lyme disease is a real thing, eminently curable with a two-to-four week regimen of antibiotics, but that chronic Lyme disease, with sometimes devastating symptoms stretching on for months, years, even decades, is not backed up by the science.
Fifteen years ago, I wrote a review (for Entertainment Weekly) of the 2008 Lyme disease documentary Under Our Skin in which I stated, trying to do nothing more (or less) than follow the science, that chronic Lyme disease does not exist. I was besieged by angry responses more than 500 of them. Many were built around testimonials from individuals who said that they or one of their loved ones suffered from chronic Lyme.
Today, I wouldnt make the same blanket statement. The science has advanced since 2008 (starting with a crucial study that was published in 2008). In Deep Places: A Memoir of Illness and Discovery (2021), the New York Times columnist Ross Douthat has written with searching eloquence and insight of his struggle with Lyme disease, and how it included his battles not just with the medical establishment but with his own skepticism. The perception that people who think they have chronic Lyme are victims of a psychosomatic phenomenon is one that Douthat first leaned toward, even about himself; thats part of what makes him such a convincing messenger. But even if you believe that chronic Lyme disease exists, you can also believe the question isnt nearly that simple.
The Quiet Epidemic opens with a man in Kalamazoo capturing birds and taking tiny ticks off them. As we see the ticks hes gathered onto a plastic petri dish, dramatic music fills the soundtrack. Its rapturous thriller music; you could also say that the music swells with a kind of holy fervor. Because the truth is that Lyme disease, unlike other diseases, has become more than a disease. The debate that has been raging about it since the 90s, with clusters of protesters arraying themselves against the medical establishment, and the medical establishment digging in its heels, has turned the diseases very identity into an issue of belief, a question of faith. From the start, the film presents the ticks almost as dark objects of worship. Theyre the carriers of Lyme disease, and therefore carriers of The Cause.
In The Quiet Epidemic, Mary Beth Pfeiffer, a former reporter for The Poughkeepsie Journal and the author of Lyme: The First Epidemic of Climate Change, says that America now has 500,000 cases of Lyme disease a year, 10 to 20 percent of which she says become chronic. The filmmakers trace the history of Lyme disease (first identified, in the Connecticut town it was named for in 1975, as Lyme arthritis). They interview Ivy League scientists, give us a crash course in what a spirochete is (the corkscrew-shaped bacteria injected into the bloodstream by ticks, and a first cousin of the spirochete that causes syphilis), and trace the life of Julia Bruzzese, a 15-year-old girl from Brooklyn who was struck by a series of drastic symptoms that her doctors could neither cure nor identify the source of.
One day was she was 11, Julia felt sick at school; she couldnt see, and couldnt move her legs or arms. She was taken to the hospital and tested for every disorder under the sun, but each test came back negative. Today, she cant walk and is in a wheelchair, with a mostly unflinching good nature about her condition. Four months into her ordeal, she was picked out of a crowd at JFK Airport by Pope Francis, who blessed her. That thrust her into the spotlight, and she became a media poster girl for chronic Lyme disease.
Its Julias father, Enrico, who expresses his familys agony as he sits in his half-finished basement, surrounded by boxes and boxes of pills and oxygen respirators. Hes desperate to heal his daughter. Its so much more than just suffering and disease, he says. Its like an atomic bomb drops down on your life and just turns everything upside down. The conundrum, as the film presents it, is this: If the medical establishment wont acknowledge that Julia has chronic Lyme disease, and in fact thats what she has, then how can she be cured?
That all the tests she took came back negative is part of the chronic Lyme syndrome, and part of why so many outsiders view the phenomenon with skepticism. Last week in The New York Times, Nicholas Kristof wrote a striking column about the epic of unexplained chronic pain that now afflicts Americans what he describes as a vast and mysterious panorama of pain that is increasing, sometimes with no obvious physical cause.
Kristof connects that pain with our current social decline (the vanishing middle class, the anxiety and rage and helplessness, and so on). So you might say that his point echoes the psychosomatic view of chronic Lyme disease. The symptoms of Lyme are often similar to those of fibromyalgia, chronic fatigue syndrome, or various inflammatory disorders, but according to The Quiet Epidemic many patients with chronic Lyme test negative even for Lyme. That, according to the film, is because of two crucial genetic markers that were taken off the test so that they could be used in a potential Lyme vaccine (the development of which has languished for 20 years). That this has the contour of a conspiracy theory doesnt make it wrong. But a conspiracy theory is what it sounds like.
Where The Quiet Epidemic is on solid ground, and hits moments of investigative power, is in relating the scientific evidence thats been gathered in recent years. The film looks at the case of Vicki Logan, a pediatric ICU nurse who was diagnosed with chronic Lyme and cared for, until she died, by Dr. Kenneth B. Leigner. After Logan was on antibiotics for months, the Mayo Clinic disputed her diagnosis. But according to a report in the New York Times, Leigners diagnosis was ultimately vindicated. Scientists at the CDC in Atlanta found the Lyme spirochete swimming in a sample of Vicki Logans spinal fluid. (Thats what you call a smoking spirochete.) It indicates that Lyme can stay in the system. Ying Zhang, a microbiologist at Johns Hopkins University, describes what he calls the dandelion phenomenon, where the antibiotics chop off the top of the Lyme spirochete and leave the root, which can grow back.
All of this is potent evidence that chronic Lyme disease is more than just part of the anti-science movement (as the prestigious British medical journal The Lancet dubbed it). Yet the fact that Lyme disease itself became a movement gives one pause. Did it become a movement because it needed to because thats the only way the people suffering from it could be heard? Or did it become a movement because peoples need to believe they had it transcended their need for medical logic? Maybe both.