80 new york | july 22–august 4, 2019ranged from the ersatz niceness of Colonial
McMansions to the historic niceness of
Colonial landmarks.
The group met in a town building
between the planning-and-zoning offices
and a community playhouse, and its
exterior— Georgian-style redbrick—
conformed to the surrounding niceness. Its
interior was universal municipal bleak.
Tonight’s meeting would be a little unusual,
the group leader told me when I’d asked if I
could visit. It would be led by a Reiki master
who specialized in Lyme and other tick-
borne diseases. Seven women had come, all
in late middle age, all with glasses and sen-
sible hair.
To start with, the Reiki master suggested,
perhaps we could go around and share our
stories, say where we were in treatment—
only if we were comfortable. She would go
first. “I had Lyme and babesia back in 2005,
2006,” she said, referring to a parasitic
infection frequently diagnosed alongside
Lyme. “My son had Lyme, babesia, and bar-
tonella—so we had multiple diseases, both
of us.” In recent years, the doctors who treat
chronic Lyme have placed an increasing
emphasis on tick-borne “co-infections”;
patients are urged to get tested for a broad
range of other conditions, some vanishingly
rare. Bartonella, for example, has not yet
been shown to be transmissible from ticks
to humans, but it is one of several co-infec-
tions widely discussed. (Mold poisoning
also comes up frequently.) The Reiki master
went on: “I was treated for 15 months on
antibiotics; he was on them for eight
months. Many, many, many different ones
over the time period. And then we did some
herbs and homeopathics. But the whole
time, I was already a Reiki master, so I was
always doing energy work.” Now, she said,
“I’m symptom free, my son’s symptom free.”
She rolled her chair so she could knock on
the wood of a bookcase behind her.
A newcomer to the group said she was
attending on behalf of her children. She
had, she said, “an awkward situation.” Her
eldest had suffered from serious psychiatric
issues for years—she’d been hospitalized
and had considered antipsychotics. And
then last fall her younger daughter had
come to her parents and said she hadn’t
been feeling well. She was exhausted, for-
getful, having panic attacks. She was afraid
of turning into her sister. She’d been to ten,
12, 15 doctors, and one of them seemed to
think she had Lyme. Her parents took her
to a naturopath who ordered an IGeneX
test that came back positive and started her
on herbs and a special diet. But the naturo-
path said she should probably be on antibi-
otics, too, so they took her to an LLMD.
The LLMD said she probably had a co-
infection. So, then, “more IGeneX—andthey found out that she had babesia.” This
daughter had seemed to be doing better
now, though. The current problem was her
eldest. After discussing her symptoms with
an LLMD and reviewing files from her
mental-health hospitalizations, they’d
come to a conclusion: The eldest daughter
had “full-blown psychiatric Lyme.” The
problem was she didn’t want to be treated
for Lyme disease.
This story took a while to unfold and the
Reiki master wanted to make sure we had
time for Reiki, so we didn’t make it the rest
of the way around the table. But first, she
recommended a New York neurologist who
treated Lyme.
It was a name the newcomer recognized.
“But you know what? She’s $1,200 an hour,”
she said.
“Is she that much?” the Reiki master
asked. “I think it’s just the first visit.”
A chorus: “She sees you initially, and then
after that she puts you in with one of her
associates at $600 an hour.” “The cost is a
huge piece of this.” “It’s brutal.” “They’re all
very expensive for the first appointments.”
“They’re great doctors, brilliant people.
When you sit with them for two, three, four
hours, the depth they go into is profound.”
“There’s not enough of these Lyme-
literate doctors,” the Reiki master lamented.
Fortunately, she explained, energy healing
provided techniques to try on your own, no
doctor’s appointment required.
The group was interested. They were
taking notes. If any of them wanted to
come in for a session, she told them, she
could give them 50 percent off her usual
rate of $250. “I know everybody’s so hurt-
ing for money when you’re being treated,”
she said. Between doctors and supple-
ments and antibiotics—“and if you’re on
Mepron for babesia, forget about it. It’s like
ridiculously expensive.”
“We used to call it liquid gold!” said one
woman. “My husband would yell at me if I
spilled a drop of it.”
They were lucky, the Reiki master
reflected, that Reiki had begun to find wider
acceptance. A while back, there’d been a
study at Yale showing that patients having
heart attacks who received Reiki recovered
more quickly than those who didn’t. “It was
a great controlled study,” she said.
Her description captured a central ten-
sion of chronic Lyme: a rejection of main-
stream scientific authority coupled with a
desire for mainstream scientific legitimacy.
As for the cardiology study, the Reiki master
is not wrong. The medical establishment
has not yet subscribed to a worldview that
includes auras, but it is open to the possibil-
ity that this experience—someone touching
you gently, focusing intently on your well-
being—might be enough to measurablyAnd, I asked, sometimes the answer isn’t
Lyme?
He cut me off. “The lady that was sitting
there that was marking off the forms has a
19- or 20-year history of living in and vaca-
tioning in the Hamptons,” he told me. “She
had minimal symptoms except she forgot
to turn the chicken off and it almost
burned the house down, and so her kids
kind of tease her about her memory.” She
had animals on the property; she had
indeterminate test results. She had sore
wrists and ankles that came and went. Her
hands would feel numb in the morning.
She had Raynaud’s—“That’s common in
Lyme.” (According to the American Col-
lege of Rheumatology, 10 percent of the
population experiences Raynaud’s, a circu-
latory response to cold and stress.) In the
past, she’d tried to get an Adderall pre-
scription to help her focus.
“That’s a Lyme case until proven other-
wise,” Raxlen said. “That’s certainly enough
for me to put her on an oral- antibiotic pro-
gram—come back, see me in two months.”
Raxlen is currently on a three-year pro-
bation with the New York State Board for
Professional Medical Conduct over allega-
tions that include gross negligence, gross
incompetence, and failure to maintain
adequate medical records. This is not the
first time he has come to the attention of
state medical boards; once, he was
accused of telling a woman dying of Lou
Gehrig’s disease that she might have
Lyme. (He was ultimately not officially
censored.) But his current probation does
not seem to have injured his standing in
the world of Lyme. This fall, he will receive
the Pioneer in Lyme Award at the 2019
ilads conference in Boston.C
onnecticut in early summer is
superabundantly green. This is the
corner of the country where Lyme
disease was first named: in towns
that feel like the country without being too
far from the city’s money, places with old
stone walls and graveyards with ancient
headstones like rows of buckteeth. In June,
I took Metro-North to western Connecticut
to visit a Lyme support group. The houses I
passed on the way from the train stationCONTINUED FROM PAGE 21Maybe
It’s
Lyme