july 22–august 4, 2019| new york 81Such suggestions were understood to trans-
late directly as All in your head, so get over
it. There seemed to exist no acknowledg-
ment that a patient in the grip of a major
depressive episode might be unable to think
straight, unable to move, unable to get out
of bed—nor that telling such a patient to
just snap out of it would be as useless as tell-
ing a flu patient to try having less of a fever.
Provided that the depression and anxi-
ety were caused by bacteria, the support-
group attendees readily described them as
central facets of Lyme. (“Psychiatric Lyme”
is a term with little purchase beyond the
Lyme-literate community. It relies heavily
on the research of the Columbia psychia-
trist Brian Fallon, who runs the university’s
Tick-Borne Disease Research Center and
otherwise specializes in “illness anxiety,
hypochondriasis, obsessive-compulsive
disorder, and somatoform disorders.” In
addition to researching long-term antibi-
otics for Lyme, he has also done research
on antibiotics as a treatment for psycho-
sis.) In a large green box, a pamphlet reads,
“It is important to remember that Emo-
tional and/or Cognitive disorders can be
the only symptoms of Lyme disease.” A list
of possible manifestations includes depres-
sion, anxiety, irritability, rage, hyperactiv-
ity, and problems with attention and focus.
Aronowitz sees “a kind of irony” in the
frustration that chronic-Lyme patients can
inspire among mainstream doctors. “We set
a standard that says something like, for your
suffering to be legitimate and for us to pay
attention to you and want to see you—this is
‘we, medicine’—you should have a mecha-
nism behind it. So are we surprised that
there’s a whole lay group organized around
saying we need a mechanism and we
demand you see that there’s a somatic mech-
anism behind this thing?” He went on:
“There’s suffering that has no name and no
precise mechanism, possibly because it’s not
localizable to a mechanism. And that doesn’t
make it illegitimate, either.”I
arrived home from the meeting
with a lime-green nylon bag printed
with a large silhouette of a tick and the
legend little tick, big problem. I’d
stuffed a handful of pamphlets inside and
began to read them.
The pamphlets were produced with sup-
port from IGeneX and, in the case of the
Lyme Disease Association’s LymeR Primer,
a roll call of other tick-borne businesses:
companies selling insect- protective cloth-
ing and tick-control systems and other
diagnostic labs—among them Galaxy Diag-
nostics, the self-declared “Best in Bartonella
Testing.” If Lyme can be an identity, it is also
a market, not just for tick boxes and diag-
nostics but also for brands. On her website,the $1,200-an-hour neurologist recom-
mended in the meeting sells $220 nutri-
tional cleansing supplements and her own
line of anti-tick clothes.
Jordan Younger is a wellness blogger
who received a diagnosis of Lyme disease
last summer, and since then she has been
sharing updates about her condition and
treatment with her 211,000 Instagram
followers. Several years back, Younger
began writing under the name “the
Blonde Vegan,” but in 2014 she concluded
that her veganism was a form of
orthorexia—disordered eating—and
rebranded herself as “the Balanced
Blonde.” The episode of the Balanced
Blonde podcast in which Younger dis-
cusses her Lyme diagnosis presents a sur-
vey of her lifelong health issues. Focused
primarily on digestion and skin, the story
begins in her infancy and leads inexorably
to the offices of Dr. Erica Lehman, a Bev-
erly Hills ophthalmologist practicing as
an LLMD. (Her biography lists fellow-
ships in corneal surgery.) Lehman tells
Younger that she has “every right” to feel
bad (“which was so validating and excit-
ing,” Younger says). It all makes sense to
her in retrospect: her lifelong food issues,
her orthorexia. “I was dealing with these
Lyme bugs,” she says, “taking over my
body and eating all my nutrients.”
I spoke to Younger a little over a year
after she was first diagnosed, and she
described the treatments she had under-
gone since then. Right away, she said,
Lehman started her on around 30 supple-
ments and began doing ozone therapy, a
procedure in which blood is drawn, mixed
with ozone, and then reinjected into the
body. Younger did ozone for nine months
or so, and it always made her feel worse.
“At first I was so okay with the Herxheimer
reactions,” she said. “It’s part of healing.
But I reached a point more recently where
I really do just want to feel better in my
everyday life.” So she stopped doing ozone
and stopped some of the other drugs she
was on, and lately she was getting injec-
tions of umbilical stem cells, plus thrice-
weekly Rocephin IVs. She also goes on
weeks-long “water fasts” at healing centers.
Her doctor doesn’t send her on those; she
does them on her own, but she has met fel-
low Lyme patients that way. When you
fast, “it starves the toxins,” she explained.
Younger told me that Lyme has become
her greatest gift. It opened her up to the
things that really matter and gave her per-
mission to draw boundaries and say no to
things she doesn’t want to do. “I mean, I’ve
said things to my family like, ‘Well, part of
why I’m sick is because of the pressure that
you’ve put on me my whole life.’ And my
mom’s like, ‘Well, aren’t you sick becausechange the way your body functions, even if
no one can quite explain why. But Reiki, in
contrast to the practices of Lyme-literate
doctors, presents no risk of actively harm-
ing a patient.
The support group, meanwhile, pulled in
other directions. “I have a question,” one
woman responded. “Can you spell that anti-
malaria drug?”
“Mepron. M-E-P-R-O-N.”
“Does it make you sicker?”
“All of them can cause herxes,” the Reiki
master said. “They all can, anything you
take.”
Herxes, or “herxing,” are a great bugbear
in the world of chronic Lyme. The term is
drawn from the Jarisch- Herxheimer reac-
tion, originally identified in the context of
syphilis. It refers to a brief, severe reaction
that can take place within the first few days
of antibiotic treatment; as bacteria die off
and release endotoxins, a patient experi-
ences fever, chills, and sometimes danger-
ously low blood pressure. A Herxheimer
reaction is possible during treatment for
Lyme disease, but in common use among
chronic-Lyme patients, herxing has come
to encompass any negative response to
medication. Herxes could last for days or
weeks and could recur cyclically during
ongoing treatment.
The logic of the herx is familiar from the
wellness realm of extreme cleanses and
colonics: “Detoxing” is good for you, and it’s
supposed to feel bad. More insidiously,
though, within the context of chronic Lyme,
the herx contributes to a sense of inevitabil-
ity. If you feel better after treatment, that
means it’s working; clearly you have Lyme.
If you feel worse after treatment, that also
means it’s working; clearly you have Lyme.
No circumstance could ever disprove a
chronic-Lyme diagnosis—any test is sus-
pect, any treatment provisional, any cure
potentially temporary. The all-
encompassing certainty of Lyme was what
unnerved me, but this seemed to be exactly
what patients wanted. Lyme was certainty.
Lyme was authority and answers.
I had been in the conference room for
almost two hours, and the circularity of
chronic Lyme had begun to make me claus-
trophobic. The women around me weren’t
crazy or foolish. They’d done what anyone
would do when something about your body
doesn’t feel quite right: They’d gone to the
doctor. They’d gone to a specialist.
But this doctor specialized in finding a
particular disease, and, once found, the dis-
ease could explain everything. It engulfed
any alternative. I knew that mental-health
diagnoses were a difficult subject among
chronic-Lyme patients; non-Lyme doctors
who suggested a psychiatric basis for symp-
toms were a source of profound frustration.