july 22–august 4, 2019| new york 19ward from there. Lyme is a community with a cause: the recogni-
tion of its sufferers’ suffering—and, with it, the recognition of Lyme.T
he home page of Lyme Resource Medical of New
York shows Central Park, with distant sunbathers
scattered across a rolling expanse of grass. While the
name suggests a degree of institutional grandeur,
Lyme Resource Medical is primarily the practice of
Dr. Bernard Raxlen, and its offices are a small fifth-floor warren
of rooms near Times Square.
Raxlen is one of the first names you’ll find if you search for a
Lyme-disease doctor in New York. The Lyme community’s word-
of-mouth network makes certain doctors—like Richard Horow-
itz, the best-selling author of Why Can’t I Get Better—into niche
celebrities, and within this milieu, Raxlen has the status of an
elder statesman. Twenty years ago, he was one of the doctors who
founded ilads, the International Lyme and Associated Diseases
Society, which issues its own treatment guidelines, intended to
counter those of the medical establishment. He inspires fierce
reverence among patients. “Tears streamed down my face,” wrote
Jennifer Crystal of watching him speak at a 2012 ilads confer-
ence. Crystal, whom Raxlen began treating in 2005, blogs about
chronic Lyme for the Global Lyme Alliance. (Her recent posts
include one on an experience she calls “song iteration”—having
songs stuck in her head for “days, weeks, even a month”—which
she describes as a “maddening symptom of neurological Lyme
disease.”) Allie Cashel, another longtime patient of Raxlen’s, is the
author of Suffering the Silence: Chronic Lyme Disease in an Age
of Denial, a 2015 memoir that begins when she comes intoRaxlen’s care as a child after he diagnoses her Wall Street father
with chronic Lyme. “Thank God for Dr. Raxlen,” Cashel’s father
tells her. “He had the guts to go against a lot of conventional wis-
dom, and I will be forever grateful to him for that.”
You are unlikely to find yourself in this office unless you’re already
considering the possibility that you have Lyme disease—perhaps
you saw something online or heard something from a friend. Still,
a Lyme-literate doctor like Raxlen is the gatekeeper who validates
chronic Lyme as an identity. Lyme-literate doctors are often
referred to as LLMDs, though the title doesn’t reflect any specific
set of qualifications or credentials. ilads offers a daylong course in
Lyme fundamentals and, through its educational arm, the Interna-
tional Lyme and Associated Diseases Educational Foundation
(iladef), a one-to-two-week training program for clinicians. The
only prerequisites for the latter are completion of the Lyme-funda-
mentals course and the ability to prescribe antibiotics.
When I visited, Raxlen’s waiting room had two black leather
couches and a narrow bookcase in one corner. Among the titles on
its shelves were The Creator and the Cosmos: How the Greatest Scien-
tific Discoveries of the Century Reveal God and Get Rich Click! The
Ultimate Guide to Making Money on the Internet. As I waited for him
to finish an appointment, I read a children’s book I’d found among
the issues of WebMD magazine on the coffee table. Learning About
Lyme is written by Raxlen and relates the story of a little girl named
Annie. “Annie has been real sad lately,” reads one page. “Her personal-
ity has changed from bright and sunny to dark and moody. Drastic
changes in your personality can be a sign of Lyme disease.”
From Raxlen’s office in the back drifted snatches of conversation.
“I could get bit again?” said a woman’s voice. “Oh yeah, I’m notFrom left, Bella and
Yolanda Hadid; Lena Dunham;
blogger Jordan Younger.chronic lyme on instagramPHOTOGRAPHS: PREVIOUS SPREAD, FLASHPOP/GETTY IMAGES. THIS SPREAD, @YOLANDA.HADID/INSTAGRAM; @LENADUNHAM/INSTAGRAM; @THEBALANCEDBLONDE/INSTAGRAM