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Pain and Mystery: What you should know about Lyme disease
By Virginia
Williams
2004
I hurt all over. Every morning I struggled to keep my
eyes open, and my body felt like I had been hit by a Mac
truck.
“Mumps” said the doctor, “Measles”
said the nurse, “Chicken Pox, said the lady with
the alligator purse. As the old nursery rhyme attests,
sometimes it can be anyone’s guess, even a doctor,
what ails you.
”What’s wrong with me?” I would ask
anyone who might listen. It took me five long painful
years to find out. By then I was sick and tired, not only
physically but mentally, after searching in vain for an
answer.
“I’m 99% sure you have Lyme disease,”
the doctor said confidently. It would have been a welcome
statement from anyone, even the lady with the alligator
purse. After five years, eight specialists, and four separate
diagnoses, I was understandably skeptical of any diagnosis,
but I had done my homework. I had spent many hours on
the Internet trying to find answers myself, and knew that
Lyme fit my symptoms, and was curable—or so I thought.
Lyme disease, caused by the bite of a deer tick, is the
most common vector-borne disease in the U.S.—vector
being an animal or insect that transmits a disease. The
deer tick is much smaller than the type of tick that annoys
your dog, and to a human, is much more dangerous. Although
barely the size of a poppy seed, these ticks spit out
a noxious bacteria called Borrelia burgdorferi that nestles
in blood, skin and spinal fluid of humans, causing variety
of symptoms, that may include among others: a “bull’s
eye” shaped rash, swollen glands, fever, muscle
aches, tingling or numbness, joint and muscle pain, and
swelling of joints. In rare cases, it can cause heart
swelling, meningitis, even death.
Perhaps because it is perceived as being a rare disease
that only arises from boy-scout jamborees or camping trips,
many doctors are not prepared to recognize the signs of
the disease, much less counsel their patients about prevention.
In my case, what became a painful journey started with
what I thought was a bout with the flu, in March of 1998.
I had swollen glands, a rash on my neck, and an alternating
tingling and numbing sensation in my arms, as if they
were asleep. I also had a pain in my shoulder that I attributed
to a pulled muscle during yoga. But after a few weeks
I became more concerned, a friend told me that the numbing
sensation might mean MS. I went to doctor #1. His diagnosis?
Carpel tunnel syndrome. I was relieved it was something
so simple. He suggested I wear a brace and avoid computer
work for a while. Not easy to do, as my work was a television
writer and producer, but it seemed a small price to pay.
A few weeks later the pain progressed to my lower back
and hips, to the point where I had trouble walking without
pain and or even raising my hand above my shoulders. Obviously
this wasn’t carpel tunnel. The pain began to affect
the way I walked, and when I tried to turn my head I had
to turn my whole body around to avoid excruciating pain.
I decided to visit a rheumatologist. Her diagnosis? Arthritic
reaction of “unknown origin.” She injected
me with cortisone and told me it should “work itself
out,” and that it was “probably a reaction
to a virus.” When I looked at her notes a few years
later when I obtained the report, she had noted: an earlier
rash, no known tick exposure. Unfortunately she didn’t
ask me about a tick—nor did she mention Lyme. Had
she asked I would’ve told her I had a small bite
on my heel that looked like a mosquito bite several months
earlier, but didn’t heal right away.
Lyme disease is typically characterized by a “bulls-eye”
like rash around the site of the bite, but being a frequent
runner, I had insect bites all the time and thought nothing
of it. The rash looks distinctly different than an insect
bite though, and can be missed altogether if the bite
is on the back or in the scalp. According the International
Lyme and Associated Diseases Society, (ILADS) fewer than
50% of Lyme patients can recall having a rash at all.
I live in Washington, DC a distinctly urban city—surely
I would be safe from the bite of a deer tick. Not true.
In the Northeast and elsewhere around the country, the
suburbs’ encroachment into the deer’s wildlife
habitat has led to large number urban residents at risk
for a Lyme infection. Deer ticks are also spread by other
city “wildlife,” like rodents. Often I would
spot an innocent doe on my daily run through Rock Creek
Park.
Later that spring, I visited a neurologist, who seemed
concerned about my seemingly neurological symptoms. But
all her tests came up negative. Back to square one. At
some point I visited another doctor who ran a Lupus test,
I’m not sure because my memory wasn’t serving
me to well by that point. Was I just getting old at 35?
That summer, I had an assignment in Morocco covering an
adventure race for Discovery Channel. I dreaded sleeping
on the cold hard ground, because my nights already consisted
of painful tossing and turning, caused by another symptom,
“restless legs” that makes your legs feel
like they are asleep and simultaneously in pain. Sure
enough, one morning I couldn’t get out of my tent,
much less run after a team and camera man through the
desert mountains. Our dashing Australian race doctor numbed
me with anesthesia for my “dodgy hip” and
sent me on my way, never asking what might be the cause.
Then again what would I have told him?
When I came back from Morocco a month later I began to
get seriously concerned. By now it was 6 months into my
mystery pain and I was no closer to understanding what
was wrong with me. What was so frustrating was the doctors
I saw didn’t seem concerned at all. It was as if:
if they couldn’t find it, it wasn’t there.
Lyme got its name from the town where it was first discovered,
in Connecticut in 1975, when a group of kids began exhibiting
the same mysterious arthritic and cognitive symptoms that
were later traced to tick bites. Although it’s most
prevalent in the Northeast, MidAtlantic and Northern California,
Lyme disease has spread to every state of the continental
U.S., and the numbers seem to be skyrocketing.
Paul Mead, medical epidemiologist at the Centers for Disease
Control and Prevention (CDC), says the number of infections
indicate that humans are being exposed to ticks more often
because there are simply more of them, and they are more
widely distributed. While he doesn’t use the word
epidemic, he admits, “It’s reasonable to say
it’s emerging because the number of reported cases
is still going up and it hasn’t been recognized
for that long—less than 30 years.”
Dr. Raphael Stricker currently treats over 600 Lyme patients
at his practice in San Francisco, California, a state
that was long-believed to be “Lyme-free.”
He says the CDC estimations are only part of a much larger
picture. “Lyme disease is grossly under-reported.
“ (A Connecticut study confirms positive Lyme tests
underreported by 7 to 27 times.) “In 2002,”
he hypothesizes, “there were 23,000 reported cases
of Lyme disease nationwide. Therefore by conservative
estimate there were about 250,000 cases in that year.
In contrast, the number of new HIV cases was 44,000, and
there were no SARS cases and no cases of mad cow disease
in the USA.”
A sobering thought, given the media attention surrounding
the latter two diseases.
Finally after I began to have real trouble getting out
of bed in the morning, I said ‘enough is enough,’
and began to search the Internet for answers. My symptoms
kept pulling up Lyme. I was actually relieved. I thought
that Lyme was “curable” and that if I tested
positive, the end of my pain was only a few pills away.
I went to Georgetown, one of the best hospitals in the
country, and sought out another rheumatologist. The doctor
agreed to a Lyme test after rolling her eyes as if to
say, “Not another patient at the mercy of the Internet!”
I instinctively knew this is what was wrong with me, but
the test came back negative. I was baffled. The doctor
wasn’t – she said I had a chronic pain condition
known as ‘Fibromyalgia,’ that it was not degenerative,
they didn’t know what caused it, and that I might
want to join a support group. She slapped a pamphlet in
my hand and sent me on my way. I was devastated. Was I
to live in constant pain the rest of my life?
I went to the support group, and sat at the back of the
room.
”I’ve had a good day if I go out to the garden
and plant a few tomatoes,” one woman said to a room
full of aching people. “I’ve had real good
luck with the elimination diet,” said another “I’ve
cut out wheat, diary, meats, and nuts and I feel so much
better.” I looked around the room for anyone who
looked like me. I spotted a few “newbies”
in my row in the back. “Ugh, I said, this is depressing!”
Another woman, Jennifer who had had Fibromyalgia for several
years, agreed and we left and never went back. Although
the support group itself wasn’t for me, it was very
helpful to have met a few friends with common problems
who understood.
What I didn’t know at the time was that the Lyme
test I took would ironically cost me four more years of
pain.
The standard blood tests for Lyme and the most universally
accepted are the ELISA, and the Western Blot. But both
of these tests if administered within the first month
of infection can come up negative. This is due to the
slow growth of Lyme antibodies. Now, Lyme tests are not
recommended within a month of infection.
But I was in the dark, and so was the doctor. As far as
I was concerned, I had this mystery illness Fibromyalgia,
and the only treatment was Advil, exercise, and antidepressants
for interrupted painful sleep.
Until the swelling. After all my reading about Fibromyalgia
I knew that swelling and redness were not indicative of
the illness. Fibromyalgia is characterized by having no
outwardly visible symptoms. My knee swelled up like a
balloon and I was scared. It was as if I was in an episode
of invasion of the body snatchers, and couldn’t
opt out. Why was this happening to me? I called my oldest
brother, the sage of the family. “How much Advil
can I take safely?” I asked. “800 milligrams”
he said, “you can do 800 milligrams, that should
knock it down.” The next morning the swelling in
my knee was gone, only to move to my wrists. Now I was
very confused, and scared.
It was 9 months into my mystery, and I was at wits’
end. Time for doctor number four was it? By now I had
lost count, and had less faith in every succeeding doctor
I saw. Another series of blood tests, a chest x-ray, and
a bone scan. The bone scan and blood test revealed evidence
of Rheumatoid Arthritis. Here at least I had some concrete
evidence that the pain wasn’t all in my head; unfortunately
something many people with Fibromyalgia are told. The
doctor told me I had a type of Rheumatoid Arthritis called
“Migratory Arthritis,” because the swelling
was only on one side and it moved from place to place.
Great, I thought, tell me something I didn’t know,
that I had a bunch of painful nomads running through my
body! But what I couldn’t understand was why I would
develop the disease—my family had no history of
Rheumatoid Arthritis and I knew it was typically an inherited
disease.
A few months later the swelling stopped. By then it was
one year since this mysterious pain and fatigue had crept
into my life. Although I was in pain every single day
and had a brutal time getting up in the morning, I got
tired of complaining, tired of explaining to people that
the “Fibromyalgia,” or whatever I had, didn’t
go away—it was just there like a evil twin, taunting
me and terrorizing me until some days I just broke down
and cried. I was sick and tired of being sick and tired.
Then I would come back to my senses. At least I didn’t
have something like lupus, or cancer—degenerative
diseases that could take my life. I decided to buck up
and for the last four years did as much of what “normal”
people could do while ignoring the pain. I would go bike
for miles with friends, do yoga, skiing, whatever I could
to make myself feel like everyone else. If I pushed myself
too hard I would pay dearly the next day. Most people,
including my family, forgot I even had anything called
Fibromyalgia. Sometimes their lack of understanding hurt,
but then I realized that I was the only one being reminded
daily—with constant aches and jabs. Why should I
burden them with my constant complaining? If I couldn’t
do anything about it how could they? It was a lonely,
helpless feeling.
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