Lyme disease: The great masquerader

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Lyme disease: The great masquerader
By Keith Ruenbeck/ Special to the Post
Friday, December 9, 2005

This year, my Labor Day weekend was dedicated to replacing a retaining
wall. The original 90-foot structure, built with railroad ties, had
eroded over the years, forming a massive jungle of rotting ties, thorny
vines, and long grass. Several family members came to help, and I
rented a Bobcat. We hauled old ties out of the tangled weeds on
Saturday, and were covered with welts, dirt, and bug bites by the end
of the day.

Starting the new wall on Sunday, I felt dizzy and weak. My helpers
graciously offered to do the manual lifting, while I drove the Bobcat,
but I barely had enough energy for that. I finally climbed out of the
cab, and collapsed on my front yard. Thus began my descent into the
puzzling and painful world of Lyme disease, where I learned firsthand
how hard it is to be diagnosed and treated for this dreadful disease.

As I lay dazed in the midday sun, my neighbor, Brad, came over. He
talked to the rest of my family, and helped move some ties. Had I been
more coherent, I might have heard him say that his wife, Karen, was
starting to feel numbness and tingling in her hands and feet. Feeling
useless, I eventually just went to bed. It was Monday afternoon, 24
hours later, when I finally got up.

When I went to work on Tuesday, my neck was swollen and sore. I
also had a large red patch across my back and chest that looked like
sunburn. By Wednesday, my neck hurt so bad I couldn't move my head, and
my shoulder ached. My chiropractor said that muscle strain could cause
the pain, but he had no explanation for the red patch. A bull's eye
rash would have been more recognizable, but Lyme disease doesn't always
leave such obvious clues.

During the day, the pain was tolerable, but at night it was
horrible. My various aches intensified around bedtime, and got worse
when I lay down. I couldn't find a position for my arm that didn't
hurt, and I rarely got more than three hours of sleep.

Then, for no apparent reason, my face started drooping on one
side. For three days, I progressively lost motion in my mouth, cheek,
and right eye. By Monday, two weeks after Labor Day, half my face was
completely paralyzed. Talking, eating, and drinking were difficult, and
I looked like the Hunchback of Notre Dame. Two contractors were helping
me finish the wall, and one said to the other, "I don't like that guy;
he doesn't show any emotion." I guess he was half right.

I had Bell's palsy, a paralysis of the face. My neighbor, Karen, who
developed a milder version of the same thing, suspected Lyme disease,
and convinced me I had it, too. Lyme disease comes from deer ticks, and
I probably encountered one in the weeds by my wall. I took a blood
test, and requested antibiotics to get a head start on the disease
while waiting for the results. Since I never saw the tick that bit me,
and didn't develop a bull's eye rash (known as clinical evidence), my
doctor refused to prescribe anything until the tests came back.

Karen had more trouble with her doctors. On the Wednesday after
Labor Day, she had heart palpitations, a migrating pain in her leg,
back, and arm, and felt constant numbness and tingling throughout the
left side of her body. By the end of the week, she had headaches, and
her arm was weak and wobbly. Afraid she was having a heart attack or
stroke, Karen saw three different doctors that week. One said it was
all in her head, another prescribed a tranquilizer, and the last said
she should go home and have a beer.

Karen had two Lyme tests, both with negative results, so she
requested something more reliable. This time, the test results showed
Lyme activity, but not enough to be above the standard guidelines. Her
doctor said she didn't have the disease, so Karen found a specialist on
the Internet.

This 'Lyme Literate' doctor determined that Karen had the disease
based on her symptoms (a clinical diagnosis). The activity seen on her
previous test confirmed the diagnosis, so he prescribed an antibiotic.
She needs to take the medication until one month after her symptoms go
away. No one knows how long it takes to eradicate Lyme, because the
bacteria hide from antibiotics and vaccines.

My Lyme test came back positive. I was given four weeks of an
antibiotic, and all my symptoms were gone by the end of it. A few days
later, though, I started having heart palpitations, tingling in my
fingers, and pain in my elbows. Initial Lyme symptoms can diminish,
even without treatment, while bacteria penetrate deeper into your
system. This is known as Chronic Lyme, which may exhibit completely
different symptoms. The clever masquerader can change its disguise to
avoid detection.

My doctor wouldn't refill the antibiotic without more testing, so
I called Karen's Lyme Literate doctor. He no longer deals with
insurance, and charges $425 for the first visit (not counting lab
fees). I called three other Lyme specialists, and they don't bother
with insurance either. If my problems continue, I may have to raid my
kid's piggybank. Just before Thanksgiving, Karen took her fourth Lyme
test, and finally tested positive. Now she knows her medication should
help, and that she's been right all along.

The number of Lyme cases in this region is astounding. Debbie
directs a children's choir at Karen's church, and suffers from Lyme and
Bell's palsy. She says that 11 people were stricken in Harvard this
year, and learned that 15 doctors at a local facility are treating 10
cases of Lyme each. I met Darcy because she was describing her Bell's
palsy at a party. She knows a third grader with the disease, a man on
Stow Road who had it three times, and another boy who got it when a
tick bit him in the eye. Many of these people, including Debbie and
Darcy, had trouble getting diagnosed and treated correctly.

Considering the number of people with Lyme, and the amount of
information available, it's puzzling why the medical community seems so
unprepared to handle the disease. Maybe the reason is that Lyme isn't
fatal or contagious. Or, perhaps, it's because treating the disease
isn't lucrative for insurance and pharmaceutical companies. Or, maybe
it's the elusive nature of Lyme bacteria. One thing is clear: Until
doctors sort this out, people will continue to be ignored or
misdiagnosed. [

Whenever symptoms don't make sense, or won't improve with treatment, it
might be Lyme masquerading as something else. Ignorance is not bliss
when it comes to this disease, and help is available through numerous
educational and support organizations on-line. As Karen says, "You need
to be your own best advocate."

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