Chapter 1: The Mysterious Onset of Symptoms

In the autumn of 1997, following my college graduation, I began to feel what I described as "electric shocks" — small, stabbing feelings that coursed through my limbs every morning. These sensations were so intense that during my walk to work from my East Village apartment, I often had to pause and rub my legs against a parking meter to alleviate the twitching and spasms. My doctor was baffled and suggested it was merely dry skin, and eventually, the shocks subsided. However, they returned a year later for a brief period, only to fade away again just when I was at my wit’s end.

Over the years, these shocks, along with other unusual symptoms such as vertigo, extreme fatigue, joint discomfort, memory lapses, and tremors, would come and go. By 2002, I was waking up nightly drenched in sweat, my legs covered in hives. Despite testing that indicated I might have lupus, few other signs supported this diagnosis. At 32 in 2008, doctors discovered arthritis in my hips and neck, leading to surgery and physical therapy. Yet, my relentless exhaustion puzzled everyone, as my test results appeared normal.

In 2012, I received a diagnosis of Hashimoto's thyroiditis, a relatively mild autoimmune condition. However, even with a careful diet and adequate sleep, I struggled to function. Simple tasks, like recalling basic words, became increasingly difficult. While teaching a poetry class at Princeton, I found myself explaining, "the season following winter, when flowers bloom." I was in near-constant pain, as I expressed in an essay for The New Yorker about living with a chronic illness. Yet, part of me wondered if this was simply the experience of everyone in their mid-30s — pain, fatigue, and mental fog.

One cold December evening in 2012, as I drove colleagues back to Brooklyn after a holiday party, I glanced at a novelist I had known for years, only to realize I could not recall his name. It took an hour to piece together that he was a friend. When I returned home, I asked my partner, Jim, if he had ever experienced something like this. He hadn’t. Something was wrong.

By the following autumn, any outing, whether it was teaching or attending a friend's birthday celebration, could result in days spent in bed. I masked my struggles as best I could. The debt accumulated as I sought top-tier doctors, many of whom didn’t accept insurance. I was diagnosed with neuropathy of uncertain origin by a neurologist and given steroids and intravenous immunoglobulin infusions by a rheumatologist, who labeled my condition as "unspecified connective-tissue disease." I consulted acupuncturists and nutritionists, as well as costly "integrative" physicians. Many of these doctors seemed perplexed, questioning if my issues were purely psychological. One suggested I see a therapist, while another dismissed my symptoms as mere fatigue.

Despite having access to excellent medical care, I felt isolatingly alone until the fall of 2013, when I found a doctor interested in infectious diseases who tested me for Lyme disease. Having grown up on the East Coast, I often camped and hiked, frequently removing engorged deer ticks from my body. Though I never developed the classic bull's-eye rash, my doctor ordered several Lyme disease tests. The inconclusive results led her to suspect that I might have the infection.

I began researching and discovered other patients experiencing debilitating joint pain and neurological issues similar to mine. Some of them had been on long-term oral and intravenous antibiotics, which can be perilous; one acquaintance was on her fifth or sixth course of IV drugs as it was the only treatment keeping her cognitive faculties intact. I read accounts from those suffering from extreme fatigue and memory loss, some so disoriented that they couldn't find their way home, while others battled severe depression. Many of these individuals had navigated a medical system that dismissed their experiences, often being funneled from internists to psychiatrists. The stories were disheartening.

After spending over fifteen years in the dark regarding my health, I finally had a potential explanation for my issues. However, instead of feeling relief, it felt like I had awoken into a nightmare. I was uncertain if my illness was truly Lyme disease. Even if I did have it, there was no consensus on how to treat someone like me, whose tests were ambiguous and who had been diagnosed late in the disease's progression. Furthermore, there was no guarantee that antibiotics would lead to improvement.

The journey through this uncertainty was daunting. My doctor warned that the label of Lyme disease could easily be affixed to symptoms, due to the tests' unreliability. I understood; I had been let down before. My experience with the medical community taught me that specialists often interpreted my struggles through their specific lenses—an autoimmune disorder! a viral issue! psychological distress! I worried that if I sought a Lyme specialist, they would simply classify me as having it regardless of the evidence.

Faced with this lack of clarity, I had to make a choice. Would I identify as a Lyme patient? If so, whom could I trust, and how far was I willing to go? One night, while deep in my research, I stumbled upon a thread of Lyme patients describing the same electric shocks that had haunted me for years. A chill ran down my spine. For almost two decades, I had sought a doctor who would consider my symptoms as something other than dry skin. I had asked friends if they experienced anything similar, but no one did. I had thought I was either imagining it or being overly sensitive—perhaps even at fault. To see my ordeal articulated in such familiar, agonizing detail jolted me into action.

I realized then that I needed to delve deeper into the intricate reality of Lyme disease and tackle the seemingly impossible task of distinguishing what is known from what remains uncertain. Unbeknownst to me, by merely investigating whether untreated Lyme could be the source of my condition, I risked being branded one of the "Lyme loonies"—patients who believed that a long-ago tick bite was responsible for their years of suffering. This derogatory term had been coined in a 2007 email from a National Institutes of Health program officer overseeing Lyme grants. The phrase epitomized the contentious nature of the disease—"one of the biggest controversies that medicine has seen," as John Aucott, a physician and director of the Johns Hopkins Lyme Disease Clinical Research Center, later described to me.

Lyme disease was first identified in Connecticut in the mid-1970s and has since become a significant and growing health concern, extending far beyond its original East Coast base. Reported cases surged nearly fivefold from 1992 to 2017, with the Centers for Disease Control and Prevention estimating that annual occurrences now exceed 300,000, possibly even surpassing 400,000. In parks across coastal Maine or Paris, ominous signs in bold black and red alert visitors to the presence of ticks that could transmit Lyme disease. During summer in the eastern United States, many parents I know dress their children in layers to protect them from ticks, regardless of the heat—an endeavor that can feel akin to a game.

Today, it seems that nearly everyone knows someone diagnosed with Lyme disease. Most are aware to look for the characteristic rash—often referred to as a bull's-eye, although many Lyme rashes are solid-colored—and to request immediate antibiotics. For most who receive prompt diagnosis and treatment, that marks the end of their story. However, many have heard secondhand accounts of individuals who continued to feel ill after their antibiotic treatment. Numerous cases exist where patients never exhibited a rash, leading to a late diagnosis when damage was already done. Countless others, upon discovering a tick attached to their skin, have encountered doctors hesitant to prescribe antibiotics for a suspected Lyme infection, wary of overdiagnosis.

The level of alarm and confusion surrounding this long-standing public health issue is remarkable. The implications are profound, particularly as Lyme disease has grown into an almost "unparalleled threat to regular American life," as Bennett Nemser, a former Columbia University epidemiologist and current manager of the Cohen Lyme and Tickborne Disease Initiative at the Steven & Alexandra Cohen Foundation, described to me. "Anyone—regardless of age, gender, political beliefs, or socioeconomic status—can brush against a blade of grass and find a tick on them."

Even as climate change and land-use alterations contribute to the alarming rise in Lyme and other tick-borne diseases, the American medical community remains entrenched in a debate over who can be diagnosed with Lyme disease and whether it can evolve into a chronic condition—and if so, why. This standoff has hindered research that could alleviate the impasse and clarify how an elusive bacterium, along with its co-infections, can impact human health. Despite four decades in the public health spotlight, Lyme disease still lacks a preventative vaccine, reliable testing, and continues to pit patients against doctors while researchers clash with one another. When I received my inconclusive diagnosis, I was aware enough not to hope for a quick cure, yet I did not anticipate the extreme uncertainty that lay ahead.

Chapter 2: The Complex Nature of Lyme Disease

The first video, "A Woman's Journey: Conversations that Matter | Lyme Disease," offers an intimate look into the experiences of patients navigating the complexities of Lyme disease. It highlights personal stories, challenges faced, and the emotional toll of living with this often misunderstood illness.

The second video, "Long Haul Lyme Disease Risk Found: Even in Early Treated Patients | Johns Hopkins Rheumatology," sheds light on new findings related to the risks associated with Lyme disease, even among those who received early treatment. It discusses ongoing symptoms and the broader implications for patient care.

Lyme disease first emerged in public consciousness when an outbreak of what appeared to be rheumatoid arthritis began affecting children in Lyme, Connecticut. A young rheumatologist at Yale named Allen Steere, who now conducts research at Massachusetts General Hospital, studied the affected children. In 1976, he named the mysterious illness after its origin and detailed its primary symptoms: a bull's-eye rash, fevers, aches, Bell's palsy (partial facial paralysis), and other neurological issues, alongside rheumatological manifestations like knee swelling. Following extensive research, Steere concluded that the black-legged ticks residing on mice and deer might carry a pathogen responsible for the outbreak. In 1981, medical entomologist Willy Burgdorfer identified the bacterium causing Lyme disease, which was subsequently named Borrelia burgdorferi.

Borrelia burgdorferi is a corkscrew-shaped bacterium, known as a spirochete, capable of burrowing deep into its host’s tissues, causing damage as it moves through. In laboratory conditions, it can morph from corkscrew form to cyst-like blobs or even slimy "biofilm" shapes. This adaptability has led researchers to label it an "immune evader." Once it enters the human bloodstream, it alters its outer surface to evade an immune response, quickly moving from the blood into tissues, complicating early detection efforts. The spirochete is challenging to locate in blood and bodily fluids, making it difficult to culture, which is the method typically used for definitive bacterial infection diagnoses. If left untreated, Borrelia burgdorferi can infiltrate joints, the spinal cord, and even the brain and heart, potentially resulting in Lyme carditis, which can be fatal.

By the mid-2000s, a consensus emerged within mainstream medicine that Lyme disease was relatively straightforward to diagnose and treat, thanks to the distinctive rash and flu-like symptoms. Infectious diseases are typically the kind of clear-cut illnesses that our healthcare system manages effectively. Evidence indicated that the standard treatment—typically a few weeks of oral antibiotics like doxycycline—effectively resolved most early-stage cases. Late-stage Lyme disease might require intravenous antibiotics for up to a month, according to the Infectious Diseases Society of America (IDSA). This assessment shaped the IDSA's treatment guidelines from 2006 until recently, when a revised draft suggested a shorter course of doxycycline for patients with early Lyme.

However, the reality on the ground proved to be far more complicated. A considerable number of individuals exhibiting Lyme symptoms later tested positive for the disease without ever having developed the characteristic rash. Others displayed numerous hallmark symptoms yet tested negative for the infection, and still entered treatment. Most alarmingly, a portion of patients who were promptly diagnosed with Lyme disease and treated with the standard antibiotic course still did not fully recover. As these individuals continued to experience symptoms, they began to refer to their condition as "chronic Lyme disease," convinced that the bacterium lingered within them.

Frustrated by the medical system's inability to provide answers, many patients became vocal advocates, arguing that Lyme disease was more difficult to cure than the establishment recognized. Family doctors in areas endemic to Lyme began experimenting with alternative treatment protocols, including prolonged courses of oral and intravenous antibiotics, sometimes lasting for months or even years. They also started testing for tick-borne co-infections that appeared in some of the most severely affected patients. Many of these physicians rotated medications in hopes of discovering a more effective treatment regimen. Some patients showed improvement, while others did not. In 1999, these doctors united to form the International Lyme and Associated Diseases Society (ILADS), which highlighted the shortcomings of Lyme disease tests and provided early evidence that bacteria could persist in both animals and humans even after treatment. ILADS proposed a broader definition of the illness and advocated for more extensive treatment.

However, many prominent Lyme disease researchers remained skeptical that the infection could persist post-treatment, asserting that many chronic Lyme patients were treated for an infection they no longer had, while others had never had Lyme disease but adopted the diagnosis for symptoms attributable to other causes. In the view of the IDSA, chronic Lyme disease was a pseudoscientific concept—an ideology rather than a biological reality. They contended that credulous patients were being subjected to unnecessary and potentially harmful IV antibiotics by irresponsible physicians. This tension only intensified when a Lyme patient in her 30s died from an IV-related infection.

To support their position, the IDSA referenced studies indicating that long-term antibiotic treatment for patients with ongoing symptoms was no more effective than placebo—evidence that, in their view, the bacterium wasn’t causing these symptoms. They also cited statistics showing that the commonly reported chronic Lyme symptoms—ongoing fatigue, mental fog, joint pain—occurred no more frequently in Lyme patients than in the general population. In public discourse, experts in this camp implied that patients believing they suffered from Lyme disease for years were either deluded or mentally ill.

This antagonism was "fierce and alienating for patients," Brian Fallon, director of the Lyme and Tick-Borne Diseases Research Center at Columbia University Irving Medical Center, noted. Hostilities only escalated, not only between patients and experts but also between community doctors and academic physicians. The IDSA guidelines published in 2006 asserted that "in many patients, post-treatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tick-borne co-infection." This assertion rang hollow for many, as researchers suggested, "Your symptoms have nothing to do with Lyme. You have chronic fatigue syndrome, fibromyalgia, or depression," which felt nonsensical to patients who were well until contracting Lyme, only to become ill afterward.

When my doctor first suggested the possibility of Lyme in 2013, my headaches, cognitive fog, and joint pain had intensified, and tiny bruises had begun to appear on my arms and legs. I felt as though I were drowning in an inky sea, unable to catch my breath, far from the joys of my former life.

Upon returning to the doctor’s office two weeks later to discuss my test results, I was unaware of the challenges ahead. The issue of imperfect diagnostics lies at the heart of the ongoing debate surrounding Lyme disease. Standard Lyme tests are structured in two tiers to minimize false positives, but they cannot reliably detect an infection in its early stages or confirm whether an infection has been eradicated. Instead of searching for the actual "immune evader"—the Borrelia burgdorferi spirochete—these tests look for antibodies produced in response to the bacteria. However, the production of antibodies takes time, complicating early detection. Moreover, antibodies can persist for years, making it difficult to ascertain whether an infection has resolved or if a new one has occurred. Additionally, antibodies associated with autoimmune and viral diseases can resemble those produced in response to Lyme.

For a comprehensive assessment, some doctors send blood samples to multiple laboratories, resulting in inconsistent results. The CDC recommends that only a specific pattern of antibodies, established by experts in 1994, be deemed indicative of a positive test. Additionally, when necessary, doctors should use their judgment to make what is known as a "clinical diagnosis," based on symptoms and likelihood of exposure, in conjunction with lab tests.

I was bewildered. My doctor presented me with mixed results from three different labs. Two had positive results for one part of the test but not the other, while the third lab returned negative results for both. Considering my medical history and specific findings from my tests, she inferred that I likely had Lyme disease. However, she also noted that I was contending with several nasty viruses, including Epstein-Barr. Furthermore, the test results may have indicated autoimmune antibodies from my earlier diagnosis.

Following the advice of a science writer friend, I ultimately visited Richard Horowitz, a Lyme disease specialist in upstate New York known for his diagnostic acumen. Dr. Horowitz, referred to as "Dr. H" by many of his patients, is a practicing Buddhist with bright blue eyes and an enthusiastic demeanor. He previously served on the Tick-Borne Disease Working Group assembled by the Department of Health and Human Services, which issued a report to Congress in 2018 outlining the challenges surrounding the diagnosis and treatment of Lyme patients.

I expressed my uncertainties regarding a Lyme diagnosis. I brought along a stack of lab results nearly half a foot tall—a paper trail that would intimidate many physicians. He examined each page, asked probing questions, and took notes. Finally, he looked up and stated, "Based on your labs, symptoms, and the findings from over the years, I strongly suspect you have Lyme." He pointed to a particular set of results from Stony Brook laboratory, noting that specific bands indicated Lyme.

In his waiting room, I had filled out an elaborate questionnaire designed to differentiate Lyme patients from those with other illnesses affecting various biological systems. Now, Dr. H conducted a physical examination and ordered a series of tests to rule out thyroid complications, diabetes, and other potential causes for my symptoms. Given my night sweats and the sensation of not being able to inhale deeply—referred to as "air hunger"—he speculated that I might have a co-infection with babesia, a malaria-like parasite also transmitted by ticks. I expressed my belief that Lyme was primarily an arthritic illness, while I experienced many neurological and cognitive symptoms. He explained that Borrelia burgdorferi is now understood to exhibit different strains, which produce varying types of disease.

"The curious thing is, I believe you're actually a very strong and healthy person, and that’s why you managed to cope for so long," he continued. "Now your body needs assistance."

Dr. H prescribed a month of doxycycline and cautioned me about the potential for an initial worsening of symptoms. As the bacteria die, they release toxins that can induce what is known as a Jarisch-Herxheimer reaction—a flu-like response referred to as "herxing" by Lyme patients. However, over time, he assured me, I should start to feel better. If not, we would need to reevaluate our approach.

That evening, while having dinner in Brooklyn, I told Jim that despite Dr. H's encouragement, I was hesitant to take the antibiotics. I lacked a definitive positive test for Lyme, and I was aware of the detrimental effects antibiotics can have on the microbiome. "What do you really have to lose?" he asked incredulously. "You're sick, you're suffering, and you've already tried everything else."

The following morning, I took my first dose of doxycycline, along with Plaquenil, which is believed to help the antibiotics penetrate cells more effectively. After taking another dose with dinner, I went to bed and awoke feeling terrible. My throat was sore, and my head was foggy. My neck felt as if it were on fire.

Two days later, I felt well enough to go out for lunch, but I remained groggy. It was a heavy, gray day, with low-hanging clouds. On our way home, I felt rain on my bare arms. I told Jim we should hurry inside. "Why?" he asked. "It's not raining." I raised my hands to show him the droplets. A dozen cold pips dotted my arms. But there was no rain. As we walked home, I felt as though cold drops were cascading over my body, my skin crawling as if a strange, violent water was cleansing me.

A few days later, I was excited to fly to a conference in Chicago, instead of feeling drained at the prospect. For three more weeks, I adhered to the medication and supplements Dr. H had prescribed. The doxycycline made me photosensitive. One late-spring morning, I absentmindedly forgot to apply sunscreen to my right hand before walking with a friend, coffee cup in hand. It was only 9 AM and overcast. By the time I returned home, my hand felt tender. Over the next few days, it developed a second-degree burn that blistered into an open wound.

After a month of antibiotic treatment, I returned to Dr. H's office. On his questionnaire, I rated my symptoms as less severe than a month prior, yet my overall score remained high. Dr. H adjusted my treatment plan, adding an antimalarial drug due to my continued night sweats and air hunger.

When I began taking the new medications in June 2014, I felt almost as sick as I ever had. I flew to Paris to teach at NYU's summer writing program, but within two days of arriving, I could barely walk down the street. Violent electric shocks coursed through my skin, and patches of burning pain and numbness crept up my neck. I trembled and shivered. This reaction persisted for five days, blending panic with pain. Was this herxing—a positive response to the drugs as they eliminated bacteria and parasites—or a manifestation of the disease itself? Or were the weeks of antibiotics contributing to my distress?

A concerned colleague asked, "I know you think you're doing the right thing, but aren't you just making your