Bob's Story
His Cure Proves Elusive
By ED LOWE
IN THE SPRING OF 1997, Bob Levine noticed an insect bite on his arm but
deduced that it was not a tick bite.
"It went away," Levine said, "and I didn't think any more of it.
At that time, I was 40 and in very good health. I'd never been sick. I'm
a self-employed engineer. I have a small business in Hauppauge. I live
in Port Jefferson. I have two children - young - and on occasion we
go out to the North Fork and stop at farm stands and visit wineries and
go to Greenport, but all our exposure out there is limited.
We don't do
any camping out in the woods, nothing like that.
"That summer," he said, "I noticed I was having heart palpitations.
I'm not a guy who runs to the doctor, but this was enough to prompt me
to see a cardiologist. He had me take a stress test. It was fine. I
figured, `Well, maybe I'm just getting older, and this is what
happens.' That fall, my hip joints hurt me, and my legs were often
stiff. I said to my wife, `This is bizarre - my hip hurts.' She said,
`So does mine.' I said, `Uh-oh, we better get checked for Lyme
disease.' I went to my GP, and he took a blood test, and it came back
negative. He said, `You must've pulled a muscle.' The hip problem went
away, and I thought nothing more of it, although I felt a general
malaise, too.
At the time, I was involved in a very big project at work,
and I attributed my malaise to that. I had a feeling of doom, not quite
a depression, just a strange sensation that something horrible was going
to happen.
"The project ended," said Levine, "but I didn't feel any better.
Then, my teeth started hurting me. I had been kind of negligent about
seeing a dentist regularly, so I went for a checkup. The dentist
couldn't find anything wrong. I hurt like I had a gaping hole in my
tooth. He thought maybe I had an infection in my molar, and, just to be
safe, he put me on antibiotics. The toothache subsided a little, but
then, weeks later, in April of 1998, I noticed I was having problems
with my left eye.
It wasn't tracking properly - and my vision always
was excellent. Now, I was slow to focus. My GP sent me to an
ophthalmologist who checked me out and said I was fine. Maybe I was
having allergy problems. After all, it was spring. He gave me drops.
"Then I noticed that I was having problems chewing, like a muscle
weakness in my jaw. It felt weird when I swallowed. I was having periods
of dizziness. I went to a doctor who said, `Let's get an MRI, just to
rule out something horrible.' It showed nothing. He said I might have a
sinus infection, because they cause all kinds of strange things. So, I
went to an ENT, an ear, nose and throat guy. He took a look and
suggested a CAT scan of my sinuses. They were fine. He put me on an
antibiotic.
"This time, after three or four days on the antibiotics, I started
to feel a lot worse. After a week, I thought I was dying. I had lost
dexterity in my left hand. I had severe vertigo. At one point I was,
like, dyslexic, writing letters backwards. My eyes got worse, and very
sensitive to light. I was going to my GP twice a week insisting, `I'm
sick.' I saw a neurologist. They tested me for all sorts of things, all
of which came back negative. So, my doctor took me aside and said,
`Look, we've got to consider that this might be stress-related
suffering.
You might be suffering from depression and then be having
physical manifestations of an impaired mental condition.' I guess the
both of us were beginning to thing that I was going crazy.
"I went back to my office. I was wearing sunglasses indoors now. I
work on a computer a lot. I was really suffering but still forcing
myself to go to work every day. I started searching the Internet in
desperation. I wasn't convinced of the stress-related idea, although my
doctor was. But I stumbled on an article written by a Dr. Brian Fallon,
who was identified as a specialist in Lyme disease at the New York
Psychiatric Institute.
The gist of the article was about how many
patients referred to him with depressive disorders had turned out to
have Lyme disease, undetected in blood tests. A lot of them wore
sunglasses indoors, it said. It went on to basically describe me. It
also went on to mention how many of the tests used to determine Lyme
disease were unreliable, especially in late-stage Lyme. I printed out
the article and went to my doctor's office without even making an
appointment.
"He took a look at it. I could tell immediately he was going to
dismiss it. The first thing out of his mouth was, `Well, first of all,
this guy is a psychiatrist. What's he doing writing about Lyme
disease?' Then he said, `Do you think you have Lyme disease?' I said,
`Yeah, I do.' He said, `Well, I don't think you do.' "
After more visits to more doctors, Levine resumed his Internet
search and found bulletin boards for Lyme disease. He posted a notice
detailing his history of positive symptoms and negative test results. He
got 30 e-mails that day from people who said, "Stop trying to convince
your doctors that you're sick. Find a doctor who will treat you."
Some
wrote of being treated for multiple sclerosis for 10 years before they
were diagnosed as suffering from Lyme disease. "Some said they had
children they thought had learning disabilities or were retarded and
later found they had Lyme disease," Levine said. "Some improved with
treatment. Some never did. But since then, I have learned that my wife
and I have late-stage Lyme, which often isn't determined in blood tests
or even spinal taps.
I had one of them, too. Also, patients often react
to the antibiotic therapy by getting worse before they get better, if
they get better.
There's a huge controversy over this in medicine and in
health insurance, but in the meantime, people are suffering. My current
doctor told me: `Your physicians did everything by the book. The book is
wrong.'"
Copyright 1999, Newsday Inc.
His Cure Proves Elusive., pp G05.
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