In the autumn of 2010, I was a newly minted PhD living in North Carolina and trying to find employment on the elusive tenure track. I juggled my search for a medical sociology position with postdoctoral research, adjunct teaching and a lively social life. My days were full but fulfilling. The first two weeks of November, however, brought leaden fatigue, and I blamed my busy schedule. Seeking respite, I booked an inexpensive silent retreat at a nearby spiritual center.
I lucked into an unusually warm weekend and spent my time strolling well-worn woodland paths and sitting in quiet meditation in a nearby grassy field. Back home after three days, I peeled off my clothes for a shower. Reflected in the bathroom mirror was a rash the shape of a bull’s-eye, blooming bright red on my left hip. After dinner I developed a fever that alternately froze and scalded me. My joints turned to piercing shards of glass, and pain stabbed my left temple. My vision blurred and my eyes became so sensitive that I flinched when my husband, Kevin, turned on an overhead light.
A few minutes on Google confirmed that the bull’s-eye rash was a clear sign of Lyme disease. I read that antibiotics, administered early, could zap the corkscrew-shaped bacteria and prevent their wreaking long-term havoc on a person’s brain, muscles and joints.
But, I learned, antibiotics don’t work for everyone.
That night, a Sunday, I snapped a photo of my rash and emailed it to my primary-care physician — let’s call him Dr. 1 — who embodied a rare combination of evidence-based brilliance and warm bedside manner. Within the hour, he called in a prescription for 10 days of doxycycline and emailed his administrative assistant to give me his next available appointment.
By Wednesday I was still a bit achy and tired, but I returned to work and canceled my appointment with Dr. 1. The antibiotics seemed to be working their magic.
Two days after swallowing the last peach-colored pill, I was celebrating Thanksgiving with my parents in Atlanta. Standing at my mother’s kitchen sink, I noticed that my hip and knee joints throbbed and that I felt cold. When a shattering headache and hazy vision appeared over pumpkin pie, I squeezed Kevin’s hand and asked him to take me to the nearest urgent-care provider. There, a physician assistant proposed testing me for Lyme.
“No, thank you,” I said. I needed to get home to Dr. 1. As Kevin sped across two states, my fever raged, and I developed palpitations so intense that I worried my heart would give out.
You’re healthy, I reassured myself. You run 10 miles every Sunday. Maybe you just need a longer round of drugs.
Luckily, Dr. 1 could see me the following day.
“Lyme mostly occurs in the northeastern states,” he explained as he performed a physical exam. “But we’ve got something down here called STARI — southern tick-associated rash illness. I suspect that’s what you have.”
He told me he’d test for Lyme and other tick-borne bacteria.
“My main concern,” he added, “is that it might not be Lyme at all. Ten days of antibiotics should have taken care of any tick-borne illness.”
I knew that Dr. 1 was quoting me the guidelines of the Infectious Diseases Society of America. But my cursory Internet research had turned up another group, the International Lyme and Associated Diseases Society. This organization recommends that practitioners tailor antibiotic treatments to a patient’s symptoms. It also encourages higher-dose antibiotic therapy that extends beyond the disappearance of symptoms.
Which approach was better?
Confused and scared, I asked Dr. 1 for an extended course of antibiotics. He authorized 20 more days, hoping that test results would tell us more.
They did not. I tested negative for Lyme, Rocky Mountain spotted fever and ehrlichiosis — all tick-borne bacterial infections.
Still, I was constantly weary and struggled to concentrate. My ever-present joint pain, headache and fuzzy vision made me feel positively geriatric at age 35.
“You absolutely don’t have Lyme,” Dr. 1 said at a follow-up visit. “You definitely did have something. The bull’s-eye rash was unmistakable. But I still suspect that it was STARI, and there’s no test for that.”
He opposed further doxycycline. “You probably caught some sort of virus in the midst of this,” he said. “Give it a couple of weeks. You’ll likely feel better.”
But I didn’t.
I pored over peer-reviewed journal articles and made inquiries among my social and professional networks. One friend called an infectious-disease specialist she knew on my behalf.
“Does she claim to have post-treatment Lyme disease syndrome?” he asked. “Because people who do are crazy.”
On the Internet, I found many tales of prolonged struggles with Lyme disease. Though trajectories and curatives varied, patient success stories had a common denominator: treatment by a Lyme-literate medical doctor, or LLMD. LLMDs appeared to have no formal training or board certification related to tick-borne illnesses. Instead, they were physicians from varying specialties, dedicated to treating patients who might otherwise end up falling through the diagnostic cracks.
My Internet search also turned up Dr. 2, the only LLMD in my town. She practiced allopathic medicine but did not take insurance. She charged $400 for the first visit and $180 for follow-ups. I balked at the cost, but Kevin didn’t.
“You’ve been sick for months,” he reminded me.
At my first visit, Dr. 2 suggested two months of antibiotics, double my prior dosage.
Two months? DOUBLE the dose? But I was desperate to regain my health.
“I should warn you,” Dr. 2 said, “you’ll feel much worse before you feel better. When the bacteria die, they release a toxic gas. It’s called a Herxheimer reaction. Your symptoms will intensify, and you’ll likely have some new ones. Still, higher and longer doses of antibiotics are the only way to kill these buggers.”
At first, the nausea from the higher dose kept me circling the toilet like a wobbly vulture. I also became incredibly photosensitive and developed sun poisoning on my knuckles from an afternoon of driving. I was pummeled by constant pain and fatigue.
“We’re killing a lot of bacteria,” Dr. 2 told me at my three-month visit. “The fact that you feel so awful tells me that the treatment is working.”
“Good,” I said. “I guess.”
One month later, there was scant evidence of improvement. Dr. 2 added Rifampin to “outsmart” the bacteria. This antibiotic turned my excrement orange, destroyed my appetite and made staying awake for more than a few hours impossible. Still, she added Flagyl, a third antibiotic. I spent the next two days moaning, dry heaving and trembling on the bathroom floor. I called Dr. 2 and pleaded with her to discontinue the Flagyl. Reluctantly, she agreed.
For my next appointment, on a humid June morning, I swathed my shivering frame in fleece and hobbled into Dr. 2’s waiting room. Twice, I rushed to the bathroom to retch up burning bile. While Dr. 2 weighed me — I was down from 122 pounds to 108 — I wept.
At the end of that visit, she handed Kevin a sheaf of scripts. There were refills of my two antibiotics and new prescriptions for an anti-nausea drug; a vile powder meant to aid in “detoxification”; an opioid; and an antidepressant. I refused the last two outright.
“Painkillers make me puke,” I said. “And I’m not depressed. I’m sick.”
For two months I lived in a pain-filled fog, constantly queasy and increasingly weak. I spent most days in bed, a pillow shielding my eyes from the blazing summer sun, comforters piled on my shrinking body.
Somehow, in the midst of my misery, my application for a postdoctoral teaching position at a nearby university was accepted. The new job started in the middle of August, but I was too feeble to climb a flight of stairs or drive a car.
“Please,” I begged Dr. 2. “I can’t do this anymore.”
She wondered whether I would consider disability. I would not. She discontinued everything but the doxycycline.
That fall, buoyed by new-job joy and an increased appetite, I managed to regain nearly 10 pounds and some perspective. Against Dr. 2’s advice, I stopped the remaining drug.
Though stronger off the antibiotics, I was not well. At my new job, I found myself reading, rereading and still not comprehending text that I had written myself. At the end of each workday, I’d lock my office door and arrange my aching body on the floor behind my desk. After an hour — sometimes two — of dreamless slumber, I’d stagger out to the nearly empty parking lot and drive carefully home.
A nurse practitioner friend who had witnessed my illness with growing alarm told me about another LLMD. Dr. 3 was board-certified in internal medicine and had nearly four decades of experience. His office was a five-hour drive from my home, and his waiting list nearly three months long. Like Dr. 2, he didn’t take insurance.
Dr. 3’s initial consult — in January 2012 — lasted half a day. I completed an exhaustive gamut of verbal questions, written surveys, physical and cognitive tests, and blood work. He asserted that peer-reviewed research and tests about Lyme were in their infancy but that he’d had great success treating patients from all over the country.
Kevin and I left that visit $1,800 poorer but with a glimmer of hope.
At our next visit, Dr. 3 guided us through my test results.
The data were mixed. My Lyme test was deemed inconclusive, but I tested positive for two organisms that often co-occur with Lyme. Dr. 3 explained that what we call Lyme is more accurately conceptualized as a complex set of infectious agents passed to a human through the bite of a tick. Many symptoms attributed to Lyme may be the result of co-infections from organisms such as Babesia or Bartonella. These co-infections complicate the illness. Yet these microbiological monsters are rarely considered and can be difficult to detect.
Dr. 3 promised to prescribe only drugs that he felt were absolutely necessary and to take a “go low, go slow” treatment approach. He planned to balance Western medicine with herbal and nutritional supplements.
“It’s true that killing the bacteria will make you feel bad, but my job is never to let you get as ill as you did,” Dr. 3 said. Allowing patients to suffer constant Herxheimer reactions was counterproductive, he said, perhaps even damaging.
Under Dr. 3’s care, I slowly but steadily regained my health. At his urging, I added a range of complementary and alternative health practices. Some were free (mindfulness meditation and exercise), but most were not (copious supplements and regular acupuncture). I’d love to identify a single magic bullet that improved my condition, but I can’t. I credit Dr. 3’s experience, patient-centered approach, reliance on multiple modes of evidence (such as regular blood work and symptom checks), and a combination of numerous therapies.
I have spent approximately $10,000 a year — roughly a quarter of my pretax postdoc income-on out-of-pocket Lyme-related expenses. Fortunately, Kevin’s salary kept us afloat. Many tick-sick patients are not as lucky.
In May 2013, 2
“I recommend that you stay on your immune-boosting supplements for another nine to 12 months,” he said. “But you’re a different woman than when I met you.”
It was true. I had my life back.
In 2014 the Environmental Protection Agency noted that Lyme incidence had doubled since 1991, and the Centers for Disease Control and Prevention revised its annual estimates. In the blink of a mathematical equation, the United States went from 30,000 Lyme cases per year to 300,000.
Improved awareness and surveillance are critical to tackling this public-health problem, as are advances in research and testing. But there’s a crisis of practice that must also be addressed, particularly for patients who are diagnosed with late-stage Lyme and for the CDC’s estimated 10 to 20 percent of patients who — like me — do not fully recover after standard antibiotic treatment.
Potentially dangerous practitioners such as Dr. 2 thrive in the unregulated Wild West of Lyme care. Meanwhile, clinicians such as Dr. 3 are the medical version of a four-leaf clover. Yet both call themselves LLMDs. Standardization and board certification must be created for this designation.
And Lyme must be redefined, perhaps as a syndrome encompassing a constellation of harmful tick-borne organisms, only some of which are understood.
As anyone who has had a complicated case can attest, Lyme may not kill you, but you’ll wish you were dead. Until tick-borne illnesses are treated more seriously, hundreds of thousands of people will experience unnecessary and prolonged suffering.
Moloney is an assistant professor of sociology at the University of Kentucky in Lexington. This article was excerpted from Health Affairs, at healthaffairs.org.