20 new york | july 22–august 4, 2019going on the lawn at all!” A few minutes later, a woman in gym
clothes with long blonde hair and a tight face emerged. She took a
seat on the other couch and began to fill out a sheaf of paperwork.
Raxlen brought me back to his office, past a wall with a large
black-and-white photo of himself in younger days, when his rakish
goatee was still dark. The CV posted on the Lyme Resource Medical
site lists stints in Guatemala, Hawaii, Israel, and Brazil; not until
he’d settled in Connecticut and was practicing as a family therapist
did he turn his focus to Lyme disease. He is trained as a psychiatrist,
but he is not board certified in that or any other specialty.
When a new patient arrives in Raxlen’s office, “you test them
first,” he told me. “You’d send the blood to a—” He paused and
seemed to consider the next word. “A respectable lab. The bigger
labs don’t usually get it right. Their tests are pretty antiquated.” The
mainstream testing process for Lyme measures a patient’s antibod-
ies, which has made it a source of consternation: Within the first
week or so after infection, a patient may not yet have an immune
response sufficient to show up on the test and could produce a false
negative. (“From that has sprung the sense, often advocated, that
the test is not very good at understanding the symptoms,” Johns
Hopkins’s Auwaerter said. “When, in fact, I think it is very good.”)
Lyme-literate doctors will ask that patients do their testing through
specialty Lyme labs that apply their own criteria in measuring
results and describe their offerings as “more sensitive.” Among the
most prominent is IGeneX, a Bay Area lab whose founder and long-
time CEO was a co-founder of ilads.
Even so, having done the test, “you don’t believe the test,”
Raxlen told me. “Too many people are sent away with a diagnosis
of NLD—not Lyme disease. And that’s because the tests come
back negative. You can’t rely on the test to differentiate a Lyme
case. You must go by the clinical symptoms.” Diagnosis is a matter
of trusting “your own radar,” he said.T
he simplest, standard-issue textbook case of Lyme
looks like this: A tick carrying the disease bites a per-
son, who then develops an expanding bull’s-eye rash
around the bite. (This happens in some 70 to 80 per-
cent of cases, according to the CDC.) This is the point
at which the person would probably see a doctor, who’d prescribe
a short course of antibiotics. A sufferer might also miss the rash
and seek treatment later, after developing Lyme’s other early symp-
toms, like a fever or painful swollen joints. A doctor in a Lyme-
endemic area (like the East Coast or the Upper Midwest) would
then administer a two-tier test for Lyme antibodies and prescribe
antibiotics if it came back positive. But there can be complications
or extreme cases, which include infection of the brain and nervous
system. Sometimes people don’t notice a bite or don’t develop a
rash, so they never get diagnosed and the disease progresses and
grows severe. And some patients who have been treated for Lyme
experience lingering symptoms afterward—sometimes referred to
as post-treatment Lyme disease, or PTLD.
No one disputes that Lyme disease can leave patients with long-
term symptoms; the source of disagreement is their cause. Is the
illness the aftereffect of an infection that has passed? Or is it an
ongoing, active infection, the kind that might require continued
treatment with antibiotics? At present, the vast majority of main-stream medical authorities do not support the use of long-term
antibiotics for persistent Lyme symptoms; this includes the Cen-
ters for Disease Control, the National Institutes of Health, the
American Academy of Neurology, the American College of Rheu-
matology, and the Infectious Diseases Society of America.
Yet there are just enough openings in the standard account of
Lyme disease—enough ambiguities about how this disease looks,
how it works, and how it can be stopped—to make it sound like a
conceivable explanation for all kinds of symptoms. Start looking
online and the symptoms that chronic-Lyme patients describe
may well sound familiar. “Brain fog” is the big one everyone talks
about: trouble thinking and focusing, forgetfulness. Then there’s
fatigue and pain—headaches, joint pain, muscle pain that won’t
go away. Or maybe the pain does go away—it comes and goes. Or
maybe there’s nausea. Or your eyes hurt. Or you’ve got panic
attacks or bladder issues. For years, syphilis was known as “the
great imitator,” but lately advocates of chronic Lyme have claimed
this title for their own condition. Lyme, they explain, could look
like anything. It might be the cause behind any number of other
diseases, recognized (Alzheimer’s, multiple sclerosis) or other-
wise. One booklet I picked up at a Lyme support group included
a list of recommended films and books, the last of which was
Morgellons: The Legitimization of a Disease: A Factual Guide by
the World’s Leading Clinical Expert. “Morgellons” is the diagnosis
adopted by a community of patients who believe that medically
unidentifiable parasites under their skin are causing sores that
extrude fibers, fuzz, and thread. Morgellons, according to the
booklet, is “a mysterious emerging infection of the skin that seems
to be correlated with Lyme disease.” (The ilads archive of research
by members also includes work on Morgellons.)
Lyme is an infectious disease, which sets it apart from other
diagnoses that patients with ongoing exhaustion and pain might
receive, such as chronic-fatigue syndrome or fibromyalgia. The
explanation for suffering that Lyme offers is almost folkloric in its
appeal. The tick, an unseen vampire parasite, emerges from the
wilderness—from any green place—to bite. Like Snow White’s
apple or Sleeping Beauty’s spindle, it leaves behind a not-quite-
deadly curse. The fact of a bite (remembered or otherwise) gives
the diagnosis its visceral power. It resonates with the earliest, sto-
rybook understanding of disease: You’ve got a bug, the germs made
you sick, so you must kill them with the right medicine to get well.
An autoimmune disorder is confusing; a bite is clarifying. A bite
means this illness came from outside. This is an invasion, a kind
of possession. This is not part of you.
The bacterium itself is often anthropomorphized in the chronic-
Lyme world: It’s devious, sneaky, hiding out in your organs, claim-
ing control of your body. Illness can manifest years after a possible
tick bite, can disappear and return later. Lyme becomes the orga-
nizing principle through which a patient understands his or her
body, which makes it hard to say whether it is ever really gone. Every
migraine, every fever, every unexplained ache could be further evi-
dence of Lyme. Its explanatory power is absolute.
Today, chronic-Lyme advocates speak of being erased, victim-
ized, silenced, and marginalized; they blame the medical estab-
lishment’s rejection of their claims on ignorance and bias. In 2017,
at the Global Lyme Alliance’s first event outside the Northeast,Lyme was certainty.
Lyme was authority and answers.