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I knew then that I needed to learn more about the complex
reali ty of Lyme disease and tackle the near-impossible task of
sorting out what was understood and what wasn’t. I didn’t yet
know that simply by exploring whether untreated Lyme disease
could be the cause of my illness, I risked being labeled one of
the “Lyme loonies”—patients who believed that a long-ago bite
from a tick was the cause of their years of suffering. They’dbeen called that in a 2007 email sent by the program officer
overseeing Lyme grants at the National Institutes of Health.
The now-infamous phrase betrayed just how fiercely contested
the disease is—“one of the biggest controversies that medicine
has seen,” as John Aucott, a physician and the direc tor of the
Johns Hopkins Lyme Disease Clinical Research Center, later
described it to me.L
YME DISEASE WAS DISCOVERED in Connecti-
cut in the mid-1970s. Today it is a major, and growing,
health threat, whose reach extends well beyond its ini-
tial East Coast locus. Reported cases increased almost
fivefold from 1992 to 2017, and the Centers for Disease Control
and Prevention estimates that annual incidences have risen to
more than 300,000, and may even range above 400,000. Step
into parks in coastal Maine or Paris, and
you’ll see ominous signs in black and
red type warning of the presence of ticks
causing Lyme disease. In the summer in
the eastern United States, many parents
I know cover their children from head to
toe—never mind the heat—for a hike in the
woods or a jaunt to a grassy playground.
On a recent trip to my brother’s new coun-
try house in Vermont, a few weeks before
his partner woke up one morning with a
dramatic bull’s-eye rash, I chased my tod-
dler sons around, spraying them so often
with tick repellent that they thought we
were playing a special outdoor game.
By now, just about everyone knows
someone who’s been diagnosed with
Lyme disease, and most of us know to look
for the telltale rash (often described as a
bull’s-eye, many Lyme rashes are solid-
colored lesions) and to ask for a prompt
dose of antibiotics. For most of those who
get swiftly diagnosed and treated, that
will be the end of the story. But lots of
Americans have also heard second hand
reports of people who stayed sick after
that course of anti biotics. And lots know
of cases in which no rash appeared and a
diagnosis came late, when damage had
already been wrought. Plenty of others,
upon discovering an attached deer tick,
have encountered doctors who balk at
prescribing anti biotics to treat a possible
Lyme infec tion, wary of overdiagnosis.
The degree of alarm and confusion
about such a long-standing public-health
issue is extraordinary. The consequences
can’t be overestimated, now that Lyme
disease has become an almost “un-
paralleled threat to regular American life,”
as Bennett Nemser, a former Columbia
University epidemiologist who manages
the Cohen Lyme and Tickborne Dis-
ease Initiative at the Steven & Alexandra
Cohen Foundation, characterized it to me.
“Really anyone— regardless of age, gender,
political inter est, affluence—can touch a
piece of grass and get a tick on them.”
Even as changes in the climate and in land use are causing a
dramatic rise in Lyme and other tick-borne diseases, the Ameri-
can medical establishment remains entrenched in a struggle over
who can be said to have Lyme disease and whether it can become
chronic—and if so, why. The standoff has impeded research that
could help break the logjam and clarify how a wily bacterium,
and the co-infections that can come with it, can affect human