The worst thing I’ve ever been told came from the lips of a
doctor at the State University of New York at Stony Brook Medical Center in
June 1998. “You have neurological damage,” said Patricia Coyle, a neurologist
in her mid-40′s who specializes in Lyme disease. She seemed tired and
overworked as she read from my latest medical tests and 10-year history of
misdiagnoses. “The Lyme spirochete has crossed into your central nervous system
and affected the blood flow in your brain,” she said. “It’s affected your
ability to think, speak, reason and remember.”
For a moment I said nothing as I sat in a fog, trying to
grasp the confirmation of something I’d suspected all along. Somehow, all I
could do was link the word “brain” with “damage.”
“What’s the … the outlook?” I stammered, frustrated by the
fact that I knew but was unable to summon the word “prognosis.”
“In 80 percent of late-stage Lyme cases, the damage is
reversible with intravenous antibiotics,” she replied.
“And the other 20? What happens to those people?”
Dr. Coyle shrugged. “Let’s not think about that right now.”
Two weeks later, with a three-foot shunt threaded through
one of my veins-starting at the crook of my elbow and ending somewhere near my
collarbone-I sat in my apartment on West 10th Street every morning, eating
yogurt to mitigate the effects of the antibiotics on my stomach, watching them
drip into my arm and telling myself that I would be among the 80 percent who
actually got better.
How did this happen to me? How did I get so sick that I
could barely string coherent sentences together? Good question. Particularly in
light of the recent articles in The New
York Times that seemed not only to dismiss the severity of Lyme disease,
but to infer that many of the people suffering from its symptoms don’t have it
at all-and shouldn’t be treated with antibiotics. In fact, I found the
front-page story by Gina Kolata on June 13, headlined “Lyme Disease Is Hard to
Catch and Easy to Halt,” so unsettling, so counter to my own experience, that I
decided to get in touch with the doctor most responsible for putting me back on
the road to health: Dr. Ray Dattwyler, director of the Lyme Disease Center at
the State University of New York at Stony Brook.
He was quoted in some of the articles, and I wanted his
opinion. Did The Times get the story wrong? First, however, some history.
I’ve always believed I contracted Lyme disease some 10 years
before I was diagnosed with it, on July 4, 1988. It was a Sunday, and I’d spent
the afternoon clearing out some of the brush behind our house in East Hampton
to enlarge the vegetable garden. At the time, Lyme was just beginning to
replace chronic-fatigue syndrome as the trendy disease du jour.
The next morning, Monday, July 5, I awoke with a splitting
headache, feeling dizzy. I started to work on a screenplay, but by noon my
knees and elbows had locked. I was drenched in sweat, burning with fever. I
looked for a tick bite, but didn’t find one. And by the time my wife returned
from visiting her mother on the North Fork, I could barely breathe. Something,
I knew, was going drastically wrong-something beyond a flu or food poisoning.
“I have to go to the emergency room,” I croaked. “I can’t keep my head up.”
At four in the afternoon, we arrived at Southampton
Hospital, where I proceeded to sit in the emergency room and wait. And wait.
And wait-drenched in sweat, with my joints aching, my head splitting and my
heart now beginning to race.
I waited for six hours . In terms of emergency-room
triage, my condition seemed to be considered somewhat less urgent than a really
painful stubbed toe. Finally, at 10 p.m., I saw a young Filipino resident. I
told him I thought I might have Lyme disease. His reaction? Not compassion, or
sympathy, or even concern. Rather, pure scorn: “Summer people,” he sneered.
“You all think you have Lyme disease.”
Reluctantly, he offered to run a blood test for Lyme, although a) he didn’t believe they were accurate and b) the technician had just
gone to dinner and wouldn’t be back till midnight.
So I left, untreated,
growing sicker by the hour.
Tuesday morning, I awoke drenched in pools of sweat.
Stumbling into the shower, I found the telltale “bull’s-eye rash” on my calf.
An hour later, I was at the now-defunct Goodfriend Emergency Center on Route
114. The doctor took one look at my leg, said “Lyme disease” and prescribed two
weeks of the antibiotic Doxycycline.
And thus, I got better. Or so I thought. I wasn’t sick, but
I wasn’t exactly healthy. The years went by. I was always fatigued and achy,
but I was functioning, usually under the precept that there’s nothing like a
hanging noose-or a newspaper deadline in the morning-to focus the mind.
Then, in January 1996, I went to work on a film that pushed
the limits of my endurance. For almost two years, through November of 1997, I
averaged four hours of sleep a night; during the other 20 hours of the day, I
was trying to fix a script that neither the director, studio, producers nor
star could agree on. In a typical two-week period, I would find myself in
London, Los Angeles, New York and Bangkok.
In the middle of all this, things started to go awry with my
ability to think clearly. I was having trouble finding words, as if the
thesaurus function in my brain were working only intermittently. My sense of
space and balance was slightly off: I was continually dropping things and
banging my left shoulder into door frames. I was plagued by phantom dental
pains, stuttering and massive headaches.
My Orthodox Jewish dentist in London (trained, surprisingly,
in Michigan) said that I had Temporomandibular Joint Syndrome (T.M.J.), the
result of grinding my teeth at night. Lyme? “Impossible.”
My dentist in New York wanted to pull half my molars. Again:
Lyme? “Absolutely not.”
A headache specialist at Cedars-Sinai Medical Center in Los
Angeles said it was cluster headaches, sort of upscale migraines. He humored me
by doing a blood test for Lyme, which came back negative.
When the film was over and every day was no longer a
steel-cage-death-match, fight-or-flee adrenaline hyperbinge, I truly fell
The pupil in my left eye constricted and froze. Lyme? My New
York ophthalmologist said it was dry eye.
The left side of my face fell; I looked as if I’d had a
stroke and was using Scotch tape to keep my eye open. Lyme? A New York
neurologist said it was Bell’s Palsy.
Each morning I got up in a fog. One day I suddenly found I
couldn’t remember simple things, like the name of the actor who played the
Godfather or the name of the restaurant where I had had lunch. If I ran into
someone outside of our usual context-e.g., on the street instead of at the
office-I’d go blank on his or her name. An out-of-town friend asked for
directions, and I was stumped trying to describe how to get from the Upper West
Side to Greenwich Village.
And the worst of it-as if all this weren’t bad enough-was
that every so often, when I was completely calm and rested, a totally
incoherent sentence would come out of my mouth. The verbs and nouns would be
transposed, or just wrong. I knew I wanted to say “I’ll get the tomato in the
kitchen,” but what would come out was “I’m getting the ketchup from their
You can’t begin to imagine what it was like to be a writer
and feel your most basic communications skills slipping away. How was I going
to earn a living?
Exasperated, filled with
despair, unable to write and convinced I was going insane, I paid my third
visit to my second neurologist, which resulted in yet another inconclusive
M.R.I. “Are you sure this has nothing to do with Lyme?” I asked. The doctor,
who looked vaguely like the actor Ed Herrmann, smiled wanly. “I think you’re
depressed,” he said. “I want to put you on Prozac.”
Hearing this, I lost my temper. “Of course I’m depressed!” I
seethed. “I’ve been to 27 doctors, had 500 tests and not one of you have been
able help me. Wouldn’t you be depressed?”
That night I went home, signed onto AOL and used the Google
search engine to look for the words “Lyme disease.” In less than a minute, I was staring at the LymeNet.org
page. And, suddenly, there it was, a list of symptoms itemizing every single
malady I’d been suffering from: word-substitution problems, morning fog,
headaches, balance problems, fatigue, phantom dental pains, sun and noise
sensitivity, short-term memory loss, Bell’s Palsy, vision problems, night
sweats, a loss of feeling in the last two digits of my feet and hands.
One of the research papers likened Lyme to syphilis: “In the
early 1900′s … syphilis was known as the ‘great imitator’ because its multiple
manifestations mimicked other known diseases. Today a new epidemic has emerged
that has multiple manifestations and has been dubbed ‘the new great
Drilling down through the Web pages, my wife noticed that a Dr. Raymond Dattwyler of Long Island had
written one of the medical abstracts. The name seemed familiar; in Greenport,
she’d grown up surrounded by doctors working on infectious diseases at the
federal government’s infamous Plum Island research facility, located just off
Orient Point at the eastern end of the Long Island’s north fork. Calls were
made, a connection was established, and two weeks later I was sitting in Dr.
Dattwyler’s office at Stony Brook.
Almost 10 years to the day since I’d seen the bull’s-eye
rash, this marked the beginning of the end of my Lyme disease.
In his years at Stony
Brook, Dr. Dattwyler had done much of the primary research on Lyme. He was also involved in diagnosis and
treatment. Supervising my case (after concluding that I “probably wasn’t
clinically insane, despite being a writer”), he set up the appointment with his
colleague, the Lyme neurologist Patricia Coyle. After a series of spinal taps,
high-tech brain scans and a battery of psychological tests, I found myself
tethered to the IV drip line in the apartment on 10th Street.
Within three weeks, the thesaurus function had returned to
At the end of a month, when the IV line was removed and the
Rocephin treatment finished, I was no longer tired or walking into walls.
In three months, my sentences were coherent; the morning fog
And within a year, my face had returned to normal, my eyes
and teeth were as good as they’d ever been, and, slowly but surely, the
headaches were subsiding.
Today, three years after the treatment, I am free of the
infection and 99.99 percent of the symptoms are gone. The other .01 percent? My
wife and I had twins 11 months ago. They’re still not sleeping through the
night. Some days, neither of us can put together coherent sentences.
In light of all this, I think it’s easy to understand why I’d question the Times article reporting that Lyme is
difficult to catch and easy to cure, and why I’d be concerned about people
being told they don’t have the disease-and being refused the antibiotics that
cured me-despite showing all the symptoms.
Ray Dattwyler struck me as a warm and compassionate man; he
has two college-aged children and the kind of wry, self-deprecating sense of
humor of someone who deals, day in and day out, with the impossibilities of
How accurate was the story in The Times ?
“The reporter got it right,” he said, much to my surprise.
“Lyme is difficult to catch, but the
article also oversimplified things.
“If you live in a Lyme-infested area and you find a
deer-tick bite, a double dose of Doxycycline-two pills-will kill the infection.
If you don’t know whether it’s a deer tick, go to a doctor. By now, they should
be able to identify them.
“The problem, however,”
he continued, “is that most people don’t find the tick. They never see it. So
when the bull’s-eye rash appears, they need three weeks of Doxycycline. That
cures 95 percent of the cases.”
But what about my experience, where I took Doxycycline and
Dr. Dattwyler paused, as if groping for the right words.
“The doctor at Southampton Hospital didn’t evaluate you properly,” he began,
then stopped, correcting himself: “Nah, the doctor was a jerk. By the time you
walked in, with a splitting headache and all the other symptoms, chances are
you already had Lyme for a week or two. You were probably already suffering
from Lyme meningitis-inflammation of the brain and its covering.
“Lyme is a very complicated disease in some aspects, but
also very simple,” he continued. “If the infection is caught early, it’s
treatable. But if not, it falls into the category of systemic-infection
diseases: It starts off as a local infection, but then, after days or weeks,
the spirochetes infect the central nervous system and affect the joints, brain,
peripheral nerves and the heart.
“In your case, the infection had already crossed into the
central nervous system. It was too late for Doxycycline to help. If I’d been
the doctor, I would have ordered a spinal
tap and put you on intravenous Rocephin immediately. When somebody shows up in an emergency room in a Lyme-infested
area with a searing headache and all your other symptoms, you don’t dismiss
them. You take their complaints very, very seriously.”
This is something I knew
all too well. But what about another article in The Times on July 7, about people who are being told they don’t
have Lyme and refused the antibiotics? How can doctors be sure about any of
this when the tests are so inaccurate?
“Back in the early 90′s, the tests were lousy,” Dr. Dattwyler explained. “But we’ve come a long way in
the past five years.” In fact, Dr. Dattwyler and a colleague have invented a
rapid test-a finger stick to be used right in the doctor’s office-that he says
is more accurate than lab tests and should be available later this year.
“Our research shows that
75 percent of the people who think they have the disease actually don’t,” he
continued. “They may have some vague illness, but it’s not Lyme.”
So why not treat them anyway? I asked, remembering my
college days, when the infirmary handed out Tetracycline like M&M’s.
They’re obviously sick with something. What’s the risk?
Dr. Dattwyler sighed.
“There are two reasons,” he replied. “First, your treatment was risky. Putting
a shunt in somebody’s arm for a month is dangerous. Rocephin can damage your
liver, and you can develop an allergy to it, which means that if you actually
did need Rocephin for something, it wouldn’t do any good.
“Second-and almost more importantly-is the public-health
issue: the overuse of antibiotics and the risk to the rest of society. We all
think antibiotics are harmless, but we have charts that show a direct
correlation between tons of antibiotics dispensed and the rise of resistant
bacteria. I could give you a hypothetical example: We give you antibiotics for
strep; other bacteria in your system become resistant. You sneeze, touch a
doorknob where somebody has left traces of pneumonia, they colonize, and next
thing you know we’ve got antibiotic-resistant pneumonia running around.
“That’s the hypothetical
example. Now let me give you a real one: When you were a kid, you could eat raw
hamburger. Today, undercooked hamburgers are killing people at Arby’s. Why?
Cattle are being dosed with lots of antibiotics; the E. coli bacteria in their
intestines has become resistant and virulent. So hamburger meat is dangerous.
“Are there people out
there today with vague, Lyme-like illnesses?” he asked. “Yes. Could we give
them the same stuff we gave you? Sure. But we’re not doing them or the public
any favors treating them for something they don’t have. The bottom line here is
that we have to find better ways of diagnosing and treating these people, because
the Lyme spirochete isn’t causing their problems.”
As for me? I may be cured, but I don’t go in the woods
anymore. And these days, our vegetables are from a store instead of our garden.