82 new york | july 22–august 4, 2019transmitted in utero, and perhaps also sexu-
ally, neither of which mainstream research
currently supports.)
Her husband was dubious, and when
Hartman echoed his skepticism on Face-
book, the backlash was swift and intense.
People she’d thought of as friends accused
her of medical child abuse; they threatened
to call CPS. Plus, she’d noticed others talk-
ing about how people with Lyme shouldn’t
get vaccines, which alarmed her—she
believed in vaccines.
“So I started arguing about vaccines,” she
told me. She started looking for more ways
to push back. When someone would talk
about how their daughter had lost a gall-
bladder to Lyme, Hartman would post a
news story about a patient who’d lost a gall-
bladder to chronic-Lyme treatment. “It
would blow everyone up,” she said. Earlier
this year, she decided to write a blog post
with the title “Lyme Warrior No More,”
explaining why she no longer subscribed to
the community’s beliefs. Afterward, people
she’d been talking to for years accused her
of being “a paid CDC shill.” (This conspira-
torial register is not uncommon and is per-
haps gaining traction. Earlier this month, a
New Jersey congressman demanded an
investigation into whether the government
had developed Lyme-infected ticks as part
of a secret biological-weapons program.)
Back when she was in all those Facebook
groups, she said, “it made me feel like I was
in the Matrix, and I took a red pill and I
could see the truth.” It was hard to leave that
sense of clarity behind.
Allie Cashel, the patient who wrote a
book with Raxlen, has translated her expe-
riences with chronic Lyme into political
engagement. She now lives in Vermont,
where she’s a fellow of the New Leaders
Council, a group dedicated to training pro-
gressive millennial leaders. She lived in
New York for a while but says her condition
made the pace hard to take—her family has
a house in Vermont, and when she was
growing up, they’d drive there on weekends
to ski. In Suffering the Silence, Cashel
remembers watching as her father “self-
administered IV antibiotics en route, one
hand on the wheel.”
When Cashel and I spoke, I told her I’d
read her book and was interested in the
moments growing up when she seemed to
feel skeptical about what was happening.
There’s a period (in between stints of
being treated by Raxlen) when she is
receiving Rocephin IVs in a local doctor’s
windowless basement. Her mom comes
along with her for appointments and, at
one point, the mom is feeling tired and
achy, so the doctor starts giving her
Rocephin too. Even as a teen, Cashel
senses something amiss. “If my doctorwould treat someone who wasn’t sick,” she
writes, “maybe I wasn’t sick either.” It
seemed like Lyme-literate medicine could
be sort of a Wild West, I told her. What did
she make of all the risky treatments on
offer? She worried about it, she said. In
general, though, she advised people to pay
attention to their instincts if something
didn’t seem right. “You know if you’re in a
space that is not super-safe,” she said.
This is not bad advice, as far as it goes,
but it is also a little sad. It means, essentially,
that the ethics of commerce apply even
when you’re sitting in the examining room:
Let the buyer beware. Yet it doesn’t seem
unreasonable that patients should trust that
their doctors are working in service of prin-
ciples higher than securing a repeat cus-
tomer. Polly Murray writes in The Widening
Circle that she’d always revered the power
of medicine; to come up against its limits
was devastating. Acknowledging these lim-
its is difficult—for doctors, for patients, for
everybody. We’ve invested near-spiritual
fervor in the medical realm: It holds our
births and our deaths; it sees inside us and
tell us what’s wrong.
After Hartman left Lyme, she started
looking for an aggressively conventional
doctor, and eventually one satisfied her
standards. The new doctor talked Hartman
through the side effects of all the drugs she’d
been on and discussed ways they might
handle her symptoms.
“She rubbed me the wrong way during
our first conversation,” Hartman said of her
new doctor, “because after we had talked
about all this, she looked at me and said,
‘When would you like to come back?’ And I
was really upset because I was thinking,
Well, you tell me. What’s the plan? I mean,
are you just not going to do anything?” It
took Hartman a moment to make sense of
the exchange. “She wanted to know, like, do
I feel like I need to come back?”
“Whenever I went to the Lyme-literate
doctors, I didn’t have to say a thing,” Hart-
man said. “I would come in and they
would literally hand me a binder, and they
were like, ‘This is your instructions.’ And
under each tab, ‘This is the first week, this
is your detailed plan, there is a handout
about your exact condition, you’re going to
come back every week at $300 each time
you come.’ ”
That was what Hartman had liked. “It
was just that being told what to do felt so
good after people saying, ‘I don’t know.
I don’t know what to do with you.’ ”
Sitting with her new doctor, Hartman
had a realization. “I was waiting to be sold
something,” she said. “I’m realizing this is
exactly who I need to be with: someone who
is going to make me think about it instead
of just telling me what to do.” ■of a tick bite?’ And yes, that’s all true.”
Lyme has also brought the Balanced
Blonde to a new audience. Instagram is
home to an active Lyme community, and
many of Younger’s photos are now
hashtagged #lymewarrior; they receive
hundreds of comments and thousands of
likes. Target is among Younger’s sponsors,
suggesting that perhaps Lyme content isn’t
a bad way to reach wellness-minded Ameri-
can women. “Jordan younger lyme disease”
is among Google’s top suggested searches
for her name, along with “jordan younger
age” and “jordan younger net worth.”I
n late june, a draft of the new
Infectious Diseases Society of America
guidelines was released for a period of
public comment that will run through
August 10. They make a clear point to
acknowledge the potential for persistent
symptoms after treatment. The pain is real,
and it merits attention; it’s just that no stud-
ies have yet shown that long-term antibiot-
ics are the best way to heal it. To my eye, at
least, the guidelines take seriously the expe-
riences of Lyme-disease patients who have
had complicated recoveries.
Abby Hartman, a pet trainer who lives
outside Minneapolis, tested positive for
Lyme disease after tick bites; her doctor
gave her first one course of antibiotics and
then another. But even after that, Hartman
still had bad joint pain and frightening neu-
rologic symptoms, like slurring her speech
and forgetting her husband’s name. She was
seeing mainstream doctors for her treat-
ment—a rheumatologist, an infectious-
disease specialist, doctors in the ER—but,
of course, she was also Googling, and when
she Googled she quickly found herself in the
world of chronic Lyme. The things she
started to read there were terrifying: They
told her she’d be sick forever, that Lyme
bacteria would stop her heart, that they’d
drill into her eyes and leave her blind.
She joined some Facebook groups and
got a recommendation for a Lyme-literate
doctor over DM—members were careful
not to post doctors’ names publicly out of
fear they’d be targeted by state medical
boards or insurance companies or the
CDC. That doctor started her on muscle
relaxants and a shifting combination of
antibiotics that she’d stay on for the better
part of a decade as symptoms came and
went. At one point, she had diarrhea for
three years straight, which her LLMD
blamed on Lyme in her GI tract.
Not until her child got involved did she
really start to feel uncomfortable about
what was going on. An LLMD told Hart-
man that her young son probably had Lyme
too. (The chronic-Lyme community enter-
tains the possibility that Lyme could be