july 22–august 4, 2019| new york 21GLA CEO Scott Santarella said, according to one blogger in atten-
dance, “There is no other disease in the world where the patients
are treated so unjustly.”
Last year, the writer Porochista Khakpour published a memoir
about chronic Lyme that cast the condition in these terms. Her
book, called Sick, received favorable reviews in The New Yorker and
elsewhere. Recently, Khakpour tweeted that she believed she’d been
passed over for jobs in the past year because of discrimination
against her chronic illness. “A lot of you are getting sick & joining
our masses,” she added. “Everything ‘wrong’ with me is also what is
powerful about me. You ableds are [crying] about hangnails; we
disableds are [cradling] our own hearts through every beat.” Lena
Dunham, who got the word sick tattooed across the back of her
neck in April, wrote a post that same month for the Instagram com-
munity Sick Sad Girlz Club. “I have never been well,” Dunham
wrote. “I don’t know what people mean when they say ‘I’m fine’ ...
I try and create awareness wherever I can for the issues I live with—
OCD, endometriosis, Ehlers-Danlos syndrome, fibromyalgia,
chronic Lyme. But I also worry it’s too much of a mouthful, that
nobody will believe so many diagnoses because ya can’t get struck
by lightning twice. It’s all interconnected, I explain. I’m the scientist,
the historian, the comedian—just trying to figure out how.”
Because of chronic Lyme’s status outside the medical establish-
ment, patient statistics are hard to come by, but a 2009 study in
the Journal of Women’s Health reviewed trials of antibiotic treat-
ment for chronic Lyme in which 69 percent of patients were
women. This preponderance of female patients has lately brought
the debate over chronic Lyme into the context of a much larger
issue: medicine’s historic, systemic tendency to dismiss and
devalue women’s agency and their knowledge of their own bod-
ies. Women with conditions like endometriosis have long expe-
rienced doctors waving off their complaints; who could blame
them (or anyone who’s heard their stories) for some baseline
mistrust of mainstream medicine? Dr. Rachel Pearson, a pedia-
trician, is the author of No Apparent Distress, a memoir dealing
with injustice in the American health-care system, and last sum-
mer, she wrote an essay for the New York Review of Books about
her experiences with chronic-Lyme patients. Pearson told me she
thinks of herself as a feminist clinician; she doesn’t want to “do
this thing of undercutting women’s stories or parents’ stories.”
When she writes, though, she wants to think through clinical
situations that challenge her in fundamental ways. Encounters
between mainstream doctors and chronic-Lyme patients are a
prime example, one she compares to the experience of treating
anti-vaxxers: “Chronic Lyme becomes an identity, being anti-vax
becomes an identity, and once a belief is incorporated into some-
one’s identity, it’s very hard to counter.”
Robert A. Aronowitz is chair of the Department of History and
Sociology of Science at the University of Pennsylvania; he studies
the history of disease and the shifting ways people understand
what illness means. Murray’s diagnosis, he pointed out, arrived
not long before patient activism emerged as a force in the treat-
ment of aids and breast cancer. Yet in contrast to ongoing advo-
cacy around those conditions, the work of patient activists on
behalf of Lyme focuses on what the disease even is, who has it in
the first place, and who decides.
This is the essential question for Lyme, said Aronowitz. “It’s the
matter of who gets to define the disease at all.”O
nce bernard raxlen, the midtown doctor, has
diagnosed a patient with Lyme, he places him or her
on a regimen of herbs and supplements—
“supplements that treat biofilm. Supplements that
treat cystic forms, and so on,” he said. These include
turmeric and oregano, as well as liquid stevia drops. “Then you havethe oral antibiotics, and you don’t just stay with doxycycline”—that
is, the standard mainstream treatment for Lyme disease. “There are
many which are used, and you rotate them so as not to build resis-
tance.” If treatment with oral antibiotics fails to produce results,
“after a certain designated period of time, somewhere between
three to six months, you would change your course of direction into
an intravenous protocol.” He estimates that between 20 and 30 per-
cent of his patients require this treatment, which he recommends
they undergo for “no less than six months.”
Long-term antibiotics are a treatment whose benefits have not
been demonstrated in controlled scientific studies. Unlike many
unproven treatments, however, they have real, well- established
risks—risk for individual patients but also the risk of contributing
to antibiotic-resistant bacteria globally. The World Health Organi-
zation calls antibiotic resistance “one of the biggest threats to global
health, food security, and development today.”
Some of these drugs’ risks are routine: Long-term antibiotics,
for example, often mean long-term diarrhea. PICC lines and
Hickman catheters—implanted ports used to administer IV
drugs—always create the potential for infection. Patients under
treatment for chronic Lyme have died of infected catheters and C.
difficile diarrhea. The common intravenous antibiotic ceftriax-
one, or Rocephin, can cause serious gallbladder problems like
cholecystitis, according to studies—in the ’90s, a cluster of cases
in a New Jersey hospital were linked to treatment for “unsubstan-
tiated diagnoses” of Lyme disease.
And here is the crux of the medical establishment’s objection
to the treatment of chronic Lyme, the source of the mutual dis-
trust between the chronic-Lyme community and mainstream
medicine: the demand for a treatment as extreme as long-term
and intravenous antibiotics. From a mainstream medical per-
spective, Aronowitz explained, the situation is something akin to
patients who have not been diagnosed with cancer deciding to
seek out “cancer-literate” doctors willing to administer chemo-
therapy. “It wouldn’t be just like, ‘Oh, there’s an alternative con-
struction of things, let people be people.’ ” After all, “ ‘Do no harm’
is the first ethical principle in medicine.”
Patients come to a doctor like Raxlen despite a multitude of things
you might think would keep them away. Not least among these is
the expense: A first visit, which lasts two hours, costs $1,350 out of
pocket; subsequent visits, every couple of months, are $600.
Before people arrive in a Lyme-literate doctor’s office, they’ve
often pursued mainstream care, too. Patient narratives often
include the testimony of seeing five, ten, or 15 other doctors before
receiving a Lyme diagnosis. Lyme patients, in other words, tend to
be people who can afford to go to the doctor, be dismissed, and find
another doctor. Raxlen himself put it more bluntly: “It’s a rich man’s
illness.” Alternatively, it is an illness to empty the bank account of
anyone but a rich man. (Steve Cohen, the hedge-fund billionaire
purported to have inspired Billions, has committed more than
$60 million to Lyme and tick-borne- disease causes. His wife, Alex-
andra, is a chronic-Lyme patient. Several universities that pursue
research topics friendly to the chronic-Lyme cause—such as
Columbia and Tulane—are among the recipients of his largesse.)
Near the end of my conversation with Raxlen, I mentioned how
clear it is that people crave answers—that they want some label to
help them understand the things they’re going through. Raxlen
agreed. Was it ever hard for him not to provide that, I wondered,
if he wasn’t certain that what they were experiencing was Lyme?
“I’m pretty sure when I tell the patient what I think is going on
and why and document it for them,” he said, “and show them what
tests were negative and why it can’t be A or B, but now we’re con-
fronted with what’s inside this C boundary and everything’s fitting
in, then I can tell the patient, from my experience, I’m pretty sure
this is what’s going on.” (Continued on page 80)