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NARRATIVE MATTERS
Health AffairsVol. 35, No. 1: High-Cost Populations, Medicaid, Spending & More
NARRATIVE MATTERS
BITTEN: A PATIENT WITH TICKBORNE DISEASE STRUGGLES TO FIND THE RIGHT PROVIDER
* Mairead Eastin Moloney
Affiliations
1. Mairead Eastin Moloney ( m.moloney@uky.edu ) is an assistant professor of
sociology at the University of Kentucky, in Lexington. The names of the
physicians mentioned in this article were withheld to protect their privacy.
The author thanks Thomas R. “Bob” Konrad, Virginia Aldige, Maxine Atkinson,
Jennifer Gierisch, and Virginia Wang for their guidance and comments.
Additionally, the author thanks Carolyn Cooper, Alexander Finch, Carol
Henderson, Kristen Rademacher, Margaret Salinger, and Susie Wilde for their
insightful comments on several drafts, and the editors and anonymous
reviewers of Health Affairs for their incredibly thoughtful feedback. None
of this would have been possible without the support of Kevin Eastin.
PUBLISHED:January 2016Free Accesshttps://doi.org/10.1377/hlthaff.2015.0404
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ABSTRACT
For a patient with Lyme disease–like symptoms, the biggest challenge is finding
a specialist who understands her condition.
TOPICS
* Diseases
* Pharmaceuticals
* Physicians
* Primary care
* Health care providers
* Internet
* Public health
* Patient care
* Prescription drugs
* Patient testing
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. I even
managed to leave my Blackberry in the sparsely furnished room, its red light
blinking accusations of unread e-mail.
Back home after three days, I peeled off my clothes for a long-overdue shower.
Reflected in the bathroom mirror was a rash the shape of a bull’s-eye, blooming
bright red on my left hip. A crimson omen on soft, pale flesh. 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.
The words Lyme disease flashed through my aching brain. A decade earlier I’d
heard the term mentioned ominously on a hiking trip in the White Mountains. Yet
despite my years of trail running, hiking, and camping, I’d never done so much
as a single check for ticks. And were sick ticks even a problem in the South? As
I recalled, only ticks in New England had Lyme disease, and not all of them were
carriers of it.
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 the
patient’s brain, muscles, and joints.
But, I learned, antibiotics don’t work for everyone.
THE EVIDENCE-BASED PRACTITIONER
I snapped a photo of my rash and e-mailed it to my primary care physician, Dr.
A, who embodied a rare combination of evidence-based brilliance and warm bedside
manner. I saw him for annual checkups and vaccinations and occasionally e-mailed
him time-sensitive questions. That Sunday night, Dr. A called in a prescription
for ten days of doxycycline and e-mailed 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 Dr. A’s appointment. The antibiotics seemed to be working their magic,
and the piles of student papers on my desk weren’t grading themselves. Besides,
hadn’t Dr. Google reassured me that early treatment was a surefire cure?
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 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 additional doxycycline.
“Do you want me to test you for Lyme?” she asked.
“No, thank you,” I said. I needed to get home to Dr. A. My respect and trust for
him were boundless, and I knew he’d either have some answers or do his best to
find them.
The next morning, 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 young, you’re healthy , I reassured myself. You run ten miles every
Sunday. Maybe you just need a longer round of drugs.
Safely home, I crawled under a duvet and eased my stiff neck against a pile of
pillows. Kevin called the doctor. He answered on the third ring.
“Can she be in my office tomorrow at 8:00 a.m.?” Dr. A asked.
I could.
Shuffling into his exam room the next day, I felt like an eighteen-wheeler had
run me over. Dr. A performed a thorough physical exam as he asked me questions.
“Have you been in the Northeast lately?”
“No,” I said.
“Did you see the tick on you? Or just the rash?”
“Just the rash.”
Dr. A nodded, then took a seat in front of me. “Lyme mostly occurs in the
northeastern states,” he said. “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 tickborne 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 tickborne illness.”
I knew that Dr. A was quoting me the recommended guidelines of the Infectious
Diseases Society of America. But my cursory Internet research turned up another
group, the International Lyme and Associated Diseases Society. This group
recommended that practitioners tailor their antibiotic treatments to a patient’s
symptoms, instead of relying on inconclusive tests or one-size-fits-all
treatment. They also encouraged higher-dose antibiotic therapy that extended
beyond symptom resolution.
Who was right?
Confused and scared, I asked Dr. A for a longer course of antibiotics. I could
practically see the struggle of patient versus public health going on behind his
eyes. As a health researcher, I empathized. Studying medicalization, I’d learned
that our cultural ideal of medicine (“More is better!”) often creates more
health problems than it solves. But it was tough to remember the
population-health perspective in my pain- and fear-filled state.
Ultimately, Dr. A authorized twenty more days of antibiotics.
“Doxy is a relatively benign drug,” he said. “People take it long term for acne,
so I don’t think it will do you any harm. And maybe your test results will offer
additional insights.”
They did not. I tested negative for Lyme, Rocky Mountain spotted fever, and
ehrlichiosis—all tickborne bacterial infections.
I faithfully took the additional antibiotics and even tried to train for an
upcoming race. But running and even walking felt like moving through wet sand. I
was constantly weary and struggled to concentrate. Add to this the duller but
ever-present joint pain, headache, and fuzzy vision, and I felt positively
geriatric at age thirty-five. I scheduled a follow-up appointment with Dr. A.
“You absolutely don’t have Lyme,” he said. However, he quickly added: “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.”
When I inquired about further doxycycline, he was politely, but firmly, opposed.
He reminded me that antibiotic resistance was wreaking havoc on our society’s
collective immune system. I immediately felt guilt at the idea of endangering
not only myself, but others.
“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.
THE RENEGADE
With a job interview looming in late January, I had to be proactive. 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.”
Indirect queries among health care providers I’d met at colloquia and cocktail
parties revealed similar sentiments: Patients who did not recover after a short
course of antibiotic treatment were either malingerers or mentally unbalanced. I
knew I was neither.
On the Internet—that great democratic dumping ground of both anecdote and
evidence—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 (LLMD). But what did
that term really mean? As far as I could tell, LLMDs had no formal training or
board certification related to tickborne illnesses. Instead, they were
physicians from varying specialties who had dedicated themselves to treating
patients who might otherwise end up falling through the diagnostic cracks.
My Internet search also turned up Dr. B, the only LLMD in my university town.
She practiced allopathic medicine but did not take my insurance or, for that
matter, anyone else’s. She charged $400 for the first visit and $180 for
follow-up visits. I gasped at the cost, but Kevin was ready to whip out the
checkbook.
“You’ve been sick for over a month,” he reminded me. “If this doctor can help
you, we can’t put a price on that.”
Dr. B’s office was light-filled, modern, and surrounded by towering pines. I was
encouraged to see her diploma-lined walls.
“I see many patients who delay seeking treatment, and they almost never get back
to 100 percent,” she said during my first visit. “Good thing you didn’t wait too
long.”
“When will I return to 100 percent?” I asked. She couldn’t say.
”Let’s start you off with two months of antibiotics, double your prior dosage,
and see how that goes.”
Two months? DOUBLE the dose? But I was desperate to regain my health.
“I should warn you,” Dr. B 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. All 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.”
Unlike Dr. A, Dr. B required no testing for Lyme disease and very little blood
work. She assured me that tests wouldn’t offer definitive answers.
“Not to mention,” she added, “it’s expensive.”
At first the nausea from the higher dose kept me circling the toilet like a
wobbly vulture. The drug also made me incredibly photosensitive: I developed sun
poisoning on my knuckles from an afternoon of driving. While I hadn’t expected
to feel better overnight, I was shocked by the constant pain and fatigue. My
daily jaunt from parking garage to office felt like I was trekking the Great
Wall of China with a boulder strapped to my back.
“We’re killing a lot of bacteria,” Dr. B. 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.”
She put her petite hand on mine. “Hang in there. It’s the only way.”
Four months into my treatment, there was scant evidence of improvement. In
response, Dr. B added Rifampin to “outsmart” the bacteria. This additional
antibiotic turned my excrement orange, destroyed my appetite, and made staying
awake for more than a few hours impossible. Still, she determined that I was
tolerating it well and added a third antibiotic. I spent the next two days
moaning, dry heaving, and trembling on the bathroom floor. I called Dr. B and
pleaded with her to take me off the third drug. Reluctantly, she agreed.
For my next appointment, on a humid June morning, I swathed my shivering frame
in fleece and hobbled into Dr. B’s waiting room. Twice, I rushed to the bathroom
to retch up burning bile. While Dr. B weighed me—I was down from 122 pounds to
108 pounds—I wept.
At the end of that visit, she handed Kevin a sheaf of scripts. Too spent to go
to the drugstore with him, I went back to bed. He returned with a Pandora’s box
of supposed curatives, prescriptions for multiple medications stapled together
in a fan-like arrangement of crinkling white paper with bold-font warnings.
There were refills of my two antibiotics and new prescriptions for an
anti-nausea drug; a vile powder, typically used for cholesterol reduction, 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 fugue state, constantly queasy and increasingly
weak. I moved into the guest bedroom so I could shift more easily between torpor
and regurgitation without disturbing Kevin.
I spent most days in bed, a pillow shielding my eyes from the blazing summer
sun, comforters piled on my shrinking body. Journeying to far-flung destinations
like the kitchen or living room turned my breath ragged and made my heart pound,
as though I were running hill sprints. When a former half-marathoning buddy
visited, she was appalled to find that I could barely stagger down my tree-lined
street with her.
Every morning I woke up thinking, Maybe today is the day I will feel stronger .
Each night I wondered if I would ever feel better. I mourned what I had lost: a
mind that could hold clear, rapid thoughts; a stomach that welcomed fare more
exotic than crackers and ginger ale; joints that did not throb with pain.
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 mid-August,
but I was too feeble to climb a flight of stairs or drive a car.
“Please,” I begged Dr. B. “I can’t do this anymore.”
She wondered if 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 ten pounds and some perspective. Against Dr. B’s advice, I discontinued
the remaining drug.
THE EXPERT
Though I felt 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, after most of my colleagues had gone
home, I’d lock my office door and carefully 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 gave
me the contact information for another LLMD. Dr. C 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 was nearly three months long.
Like Dr. B, he didn’t take health insurance.
Dr. C’s initial consult—in January 2012—lasted half a day. He ran me through an
exhaustive gamut of verbal questions, written surveys, physical and cognitive
tests, and blood work.
“I’ve focused my practice on Lyme patients for the past decade,” Dr. C said.
“And I’m convinced that this disease is far more prevalent and complicated than
we know.”
Dr. C asserted that peer-reviewed research and tests were in their infancy. His
approach was patient centered, and he used multiple modalities to target
symptoms.
Kevin and I left that visit $1,800 poorer but with a glimmer of hope.
At our next visit Dr. C sat with us and carefully, using lay language whenever
possible, guided us through my test results. The data were mixed. My test for
Lyme disease was deemed “inconclusive,” but I tested positive for two organisms
that commonly co-occur with Lyme. Dr. C 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 coinfections from organisms such as Babesia or Bartonella . These
coinfections complicate the course of illness. Yet the full spectrum of
microbiological monsters are rarely considered and can be difficult to detect.
Dr. C understood that Dr. B’s barrage of antibiotics had left me sicker and
skeptical. He 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. And we can first try therapies that strengthen
your immune system,” Dr. C said. He explained that allowing patients to suffer
constant Herxheimer reactions was counterproductive, perhaps even damaging.
Under Dr. C’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. C’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.
The sociologist in me recognizes my tremendous privilege. I have spent
approximately $10,000 a year—roughly a quarter of my pretax postdoc income—on
out-of-pocket Lyme-related expenses. Fortunately, my husband’s salary kept us
afloat. Though financially pinched, we’ve never missed a mortgage payment or
considered bankruptcy. Many tick-sick patients are not so fortunate.
In May of 2013, two and a half years after that odd red rash glared at me from
my bathroom mirror, Dr. C said I could begin tapering off my treatments. “I
recommend that you stay on your immune-boosting supplements for another nine to
twelve months,” he said. “But you’re a different woman than when I met you.”
It was true. I had my life back.
MOVING FORWARD
In 2014 the Environmental Protection Agency noted that Lyme incidence had
doubled since 1991 and declared it an indicator of climate change. Also in 2014
Lyme-focused articles covering topics such as maternal-fetal transmission,
post-treatment symptoms, and the unreliability of current testing methods
flooded the lay and academic literatures. Perhaps most significant, the Centers
for Disease Control and Prevention (CDC) revised its annual estimates: In the
blink of a mathematical equation, the United States went from 30,000 to 300,000
Lyme cases per year.
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 10–20 percent of
cases who—like me—do not fully recover after standard antibiotic treatment.
At present, most Lyme cases are treated by primary care physicians. These
doctors typically aren’t versed in the potential complexities of tickborne
illness and should be able to confidently refer their patients, especially those
who don’t recover after standard treatment, to well-trained practitioners.
Potentially dangerous practitioners like Dr. B currently thrive in the
unregulated Wild West of Lyme care. Meanwhile, clinicians like Dr. C are the
medical version of a four-leaf clover. Yet both call themselves Lyme-literate
medical doctors. Standardization and board certification must be created for
this designation.
Creating a specialty in tickborne illness would benefit both patients and
physicians. Patients would be assured that their doctors had received targeted
training. Having board oversight also provides an important mechanism for
patient feedback.
Specialists in other areas—such as oncology and nephrology—understand that
evidence-based guidelines are important, but they routinely tailor patient
treatments to account for individual attributes. Similarly, LLMDs should be able
to create treatment protocols based on a patient’s unique clinical picture.
Doctors may wish to consider the possibility of coinfections or the recently
proposed theory that “persister cells” allow tickborne bacteria to survive an
antibiotic onslaught.
Specialization could also ease the ever-present concerns of time and money.
Taking thorough histories of desperately ill patients is time-consuming, and
multiple follow-up visits are often needed. Physicians should be compensated for
their time and effort, but patients shouldn’t have to fear bankruptcy as a
result of getting expert care. Insurance companies must recognize that
Lyme—widely acknowledged as the fastest-growing vectorborne disease in the
United States—is a real and serious diagnosis, and complex cases must be
reimbursed accordingly. Clinical trials, funded by the National Institutes of
Health or private foundations, could simultaneously move the research forward
and provide compassionate affordable care.
Finally, Lyme must be redefined. Limiting the conceptualization of Lyme to a
single bacterium—the alliterative tongue twister Borrelia burgdorferi —defies
logic. Sick ticks don’t discriminate in the organisms they transmit, and new
ones are discovered all the time. For instance, the recently recognized Borrelia
miyamotoi produces many of the same symptoms as Borrelia burgdorferi yet lacks a
widely available test and won’t respond to typical antibiotic therapies. Moving
forward, Lyme may be better conceptualized as a syndrome encompassing a
constellation of harmful tickborne organisms, only some of which are understood.
As anyone who’s had a complicated case of Lyme can attest, Lyme may not kill
you, but you’ll wish you were dead. Until tickborne illnesses are treated more
seriously, hundreds of thousands of people will experience unnecessary and
prolonged suffering.
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