wroteknowynick
22.11.05, 20:40
www.amytan.net/LymeDisease.aspx
Amy Tan on Lyme Disease
I have late-stage neuroborreliosis. I have had this disease since 1999.
My case is in many ways typical. Like many, I had little awareness of
Lyme disease, for I did not live in what was considered the
tick-infested hotbeds on the East Coast. I am a Californian -that’s
where I file my taxes- and I live among the hills of San Francisco with
its tick-free, concrete sidewalks. For a good long while it did not seem
significant that I also have a home in New York, that I weekend in the
country, and my main form of exercise is hiking. In addition to trekking
in the woodlands of Mendocino, Sonoma, and Santa Cruz counties in
California, I have also sojourned to leafy spots in Connecticut and
upstate New York. I once loved to sit in the tall grass next to the
river, and lean my back against a shady oak tree.
I passed off my early symptoms -a stiff neck, insomnia, a constant
headache, and a bad back followed by a frozen shoulder- as the
unpleasant aftermath of too much airplane travel. I was often tired and
jittery, but that, I reasoned, was the consequence of an active and
exciting life. Who was I to complain? I had a wonderful life, a great
husband, lovely homes, a successful career. I was rarely sick and went
to the doctor only for my annual checkup. Even when I came down with the
fever, aches and pains of the "flu" earlier in the summer, I had managed
to beat it back without developing any of the respiratory sequelae. What
a great immune system I had!
When my feet grew tingly and then numb, I mentioned to my doctor that I
had had an unusual rash earlier that year. It had begun with a tiny
black dot that I guessed might have been a pinprick-sized blood blister.
It grew more rounded as it filled, and then I either scratched it out or
it fell out on its own, leaving a tiny pit and a growing red rash,
which, curiously, did not itch, but lasted a month. Because that rash
seemed so unusual, as did my neuropathy, I wondered aloud whether they
were related. My doctor said no.
Like many chronic Lyme disease patients, as my symptoms mounted and a
scattering of tests proved positive for an array of seemingly disparate
conditions, I was referred to specialist after specialist, until I
eventually had consulted ten and had taken countless lab tests. Because
one repeated test revealed my blood sugar inexplicably dipped from time
to time into the 20s and 30s without symptoms, I underwent a 48-hour
fast. An MRI revealed 15 lesions in my frontal and parietal lobes, but
my doctors felt that was normal for a person my age; I was 49 at the
time. A CAT scan showed an incidentaloma on my adrenal gland, and that
was where I hung my hopes, on a tiny benign tumor, which I could excise
laparoscopically in hopes of being rid of my enervating symptoms.
Instead, after beginning steroids, the bizarre symptoms worsened.
Hallucinations began, what I now realize were likely simple partial
seizures, the result of lesions on my brain. I saw people walking into
my room, two girls jumping rope, numbers spinning on an odometer, a fat
poodle hanging from the ceiling. I also had strange episodes in which I
behaved strangely but had no recollection of what I had done as reported
to me by others. I apparently rang people up at midnight and talked in a
wispy voice. I had flung laundry around the living room. My husband said
I acted at times as if I were in a trance, eyes wide open but
unresponsive to his and a friend’s questions. I now had nightly
nightmares and acted them out, punching at lamps or my husband, and once
landing on my head in a dive toward my dream assailant.
By day, my memory was held together with friable threads, my
concentration was as easy to disperse as blown dust, and when I tried to
read, I often found by the second page that I had no idea what the book
was about. When I wrote by hand, I reversed letters. When I spoke, I
substituted words with like-sounding beginnings. I did not possess any
of the skills necessary to write fiction, for I was barely able to
traverse the distance of sentence to sentence, let alone keep in mind a
narrative that had to span four hundred pages and keep taut multiple
intricacies of plot, characters, and thematic imagery. Thus, my
novel-in-progress lay abandoned between feeble attempts to resuscitate
it. At times, when asked what I was writing, to my horror, I could not
remember, and I would struggle over the next hour trying to recall the
faintest details. I no longer dared get behind the wheel of a car,
because I could not process fast enough when to depress the accelerator
and when the brake. When I did venture out on foot, I would sometimes
find myself lost in what I knew was a familiar place, my neighborhood of
thirty years. Why didn’t that building on the corner look familiar? Why
did everything seem as though it were the first time I had been there? I
easily became lost in stores, hospitals, hotels, and I would panic,
certain I was losing my mind and developing dementia related to early
Alzheimer’s. My anxiety was a hundredfold of what was warranted, even in
a post 9/11 era. Eventually, I could no longer leave my house alone. In
any case, it hurt to walk too far. My muscles were stiff, my knees and
hips ached. And I was almost too tired to care anymore.
Let me add here that my doctors were affiliated with major urban
hospitals, were tops in their department, well-known, well respected. I
liked them. I still do. Not once did they raise the idea that I was a
hypochondriac. But they also did not raise the possibility of Lyme
disease. Actually, one doctor had considered the possibility that I was
infected with a spirochetal bacteria, and he gave me an ELISA test,
which was negative -not for Lyme- but for syphilis.
I turned to the Internet, which is where doctors believe patients catch
terminal illnesses, that is, whatever disease they see described before
them on the terminal. And there I saw that an ELISA was also used to
screen for Lyme disease. Further reading led me to see that all my
symptoms could easily fall under the multi-systemic umbrella of
borreliosis. Further sleuthing gave me the name of a Lyme specialist,
someone my other physicians acknowledged was "a good doctor."
My Lyme specialist considered the history of my rash, the summertime
flu, the migrating aches and neuropathy, the insomnia and fatigue. He
thought 15 lesions in my brain were significant in light of my
neurological symptoms. He saw on previous tests that I had some
interesting changes in my immune system. He ordered a complete battery
of tests from IGeneX, a lab specializing in tick-borne illnesses, to
check for not only Lyme disease, but its common co-infections. Two weeks
later, I learned I was positive for Lyme on the Western Blot. My doctor
told me that the test only confirmed what he already knew.
Let me hasten to add that not all chronic Lyme patients test positive on
the Western Blot, at least not at the levels set by doctors who follow
CDC surveillance criteria as diagnostic. As this booklet outlines, there
is much more to be done before the tests can be considered reliable in
every lab across the country. I know this firsthand because after I
started antibiotic treatment I took part in a study in which my blood
was sent out to five different labs for the ELISA and Western Blot. The
results were all over the place -with Lyme-specific bands lighting up in
one lab and not the other. There was almost not a single consistency. In
addition, I had a negative ELISA test but a positive PCR, that is, I had
DNA evidence of borrelia in my blood. And this was nine months after I
had started antib
