The Opposite of Fate (42 page)

Unfortunately, few doctors took the time to be updated on the intricacies of such a clinical diagnosis. Why should they? They had never seen a Lyme patient. For the latest information, they depended on one-sheets that spelled out the basics: “Use the ELISA screening. If it’s positive, it may be a false positive, unless you see the bull’s-eye rash. For actual infections, ten days of antibiotics will suffice.” Even newscast doctors received press releases with similar advice, and without questioning the source, they passed this along to viewers as sound advice. But the ten-day “standard” took as its basis a single study considered grossly flawed by many Lyme doctors who saw hundreds of patients each year. Ten days of antibiotics was a recipe for relapse, the Lymies said. That was like saying one Roach Motel was sufficient for any house, no matter how small or large, whether you
had seen one roach recently or your house had been thick with them for years. If you don’t believe undertreatment is dangerous, the Lymies told me, look at us. We are the fallout from this advice. We relapsed and were refused further treatment. We who were once professors, lawyers, carpenters, doctors, social workers, teachers, and busy mothers became bedridden, then lost our jobs, our homes, and sometimes our hope.

I felt I was hearing from people drowning in the River Styx. What sort of disease had I acquired? Was it Lyme that made these people suspicious and cranky? The Lymies demanded to know why the medical community had been so hasty, so determined to say short-term treatment was good enough. They pointed out that no one even knew for certain what the etiology of Lyme disease was until 1982. And in twenty years, there had not been enough research to know how to knock back borrelia’s hydra-headed ways of invading the body and remaining entrenched in its favorite eatery, the brain.

Whether I had Lyme or not, I knew I was developing what some might call a “terminal illness,” what one acquires sitting in front of a computer terminal, ingesting Internet information in megabyte doses. But I had to know who my terrorist was. I had to visualize what was now in my body. My enemy was a spirochete, a clever bacterium with a tail, four times more complex in its genetic structure than the spirochete that causes syphilis, for which patients are given
months
of antibiotic treatment. Like the frightening creatures of
Alien
moviedom, the borrelia spirochete is a smart bug that has the ability to transform itself into other forms, a cellular version of a wolf in sheep’s clothing, able to hide and go unrecognized by antibiotics and the body’s immune
defenses. A changing arsenal of weapons was needed to knock it back, with treatment lasting years, if not a lifetime. Yet insurance companies, HMOs, and medical organizations had latched on to the notion that ten days of antibiotics was quite enough to defeat borrelia and restore patients to a pain-free, productive life. Their rationale for this parsimonious approach stemmed from concerns over antibiotic-resistant diseases that had developed worldwide from indiscriminate use of antibiotics. But acne patients continue to receive years’ worth of antibiotics without any hassles. Acne was not a life-threatening disease, the Lymies pointed out, while chronic neuroborreliosis was.

The old-timers on this message board were a skeptical bunch. They did not trust most of the medical community, only those doctors they considered “Lyme-literate,” the ones who saw hundreds of cases a year, as opposed to those who had seen only one or two, if any, in their entire years of practice. The Lymies exhorted me to find a Lyme-literate doctor, one who would order the tests by IGeneX, the lab that included all sixteen bands of the Western blot and more strains of borrelia, of which there are approximately three hundred worldwide, than any other lab.

But I was not as cynical as these Lymies. Not all doctors refused to consider Lyme. The new neurologist I was seeing had ordered the Lyme test without my bringing up the subject. He must have indeed considered it possible that I had the disease. Soon the test results would arrive, and I would have my answer.

The answer arrived: The tests were negative, all of them. I had been so sure I had Lyme disease. I still was. The Lymies’ remarks about the poor sensitivity of the ELISA stuck in my mind. I called the specialist to say I had recalled important information
that I had failed to tell him and my other doctors. I mumbled about the rash, the numbness, the stiff neck that led to my buying new pillows every week.

“I really doubt you have Lyme disease,” he said. “It’s extremely rare in California.”

I hurriedly pointed out that I lived part-time on the East Coast, that I was often in Dutchess, Putnam, and Columbia counties of New York, which were known to have Lyme disease infestations. I had vacationed in Mystic, Connecticut, which is near Old Lyme, the town for which the disease was named. “I know that I tested negative,” I said, “but I would like to take further tests, just to make sure.”

And then my doctor surprised me. He said that the lab had not run the test for Lyme disease after all. They had tested me for syphilis, that other spirochete. But if it would make me feel more at ease, he could order the best test for Lyme, the ELISA. And if that was positive, we could do a spinal tap to make sure.

That evening I wrote an e-mail to the Lyme specialist in San Francisco who had been mentioned by Lymies on the Internet; considered by them among the top experts on the disease, he saw patients from across the country and one year had been voted as among the best doctors in San Francisco. At my appointment, I told him my symptoms, and instead of looking puzzled, this doctor nodded. “Quite common,” he said. He looked at my MRI. “Characteristic,” he noted. Nothing seemed too surprising or bizarre. He filled out a lab slip for the Western blot that would be run by IGeneX, the same lab the Lymies had recommended. In short order, I had my answer: the Western blot came back highly positive for Lyme disease, lighting up many bands. A scan of my
brain showed hypoperfusion, also known as “clogged brain,” which accounted for slowed processing and other damage, all typical of Lyme. My immune system showed abnormalities indicative of an immune system battling a chronic infection—a lymphocyte count of fifty-five percent, way over the high normal of forty-two percent. I also had abnormally low natural killer cells, a marker that this doctor had seen in almost every patient with late-stage Lyme disease. He wrote the name of my official diagnosis: neuroborreliosis, also known as neurological Lyme disease.

That day, I began taking megadoses of antibiotics. Two days later I was worse than ever. My brain felt as though it were swelling; I had a terrific headache. My joint pain had grown worse, the ringing in my ears was shrill, and my hands and feet were burning. I was exhausted, as though I were coming down with the flu. I told the doctor what was happening.

“That’s good to hear,” he said. The worsening of symptoms, the Jarisch-Herxheimer reaction, happens with very few diseases in response to antibiotics; one of them is syphilis and another—wouldn’t you know it—is Lyme disease. The fact that such a reaction occurs is a confirmation of the diagnosis.

After ten days, the antibiotics had not had much effect on ridding me of my symptoms. Thank God I was not with a doctor who stuck by the ten-day standard. But after eight weeks, some of the fogginess lifted and I had an amazing amount of energy—that is, a normal amount. I was elated. I cleaned my desk, rearranged furniture and changed bedding, drove to the hardware store for supplies, then returned to paint the garage, hang a bar in the closet, and hose down the terrace. Later I shopped for
groceries, cooked a meal for friends, and washed the dishes—all ordinary chores I had not been able to do for lack of organizational skills, energy, and motivation. The next day I began to write again. A couple of weeks later the fog returned and once more I was easily tired and overwhelmed. When I tried to drive, I stopped at a green light and ran a red one.

As word of my diagnosis went around, a dozen people came forward to tell me that they too had been infected with Lyme disease. I had been initiated into a secret club. They included writers, a publisher, a publicist and his partner, a librettist, a veterinary technician, and the wife of a writer. I thought to myself: This is a rare disease? To judge from the numbers reported by the Centers for Disease Control, I should have seldom or never encountered another person who had this. Most of these people lived on the East Coast, where a tick bite is taken more seriously. A good many had been seen by savvy doctors who prescribed antibiotics without taking a screening test. The one who was not given early treatment lives in California and is also a writer. Like me, he had been unable to write. He has been battling the disease for six years. He has gone through various combinations of antibiotics, daily intravenous infusions, and painful shots. He is slowly getting well. “When the good days come,” he said to me, “they are golden. Savor them. Write your heart out.”

Finding the cause should have been the end of this story, yet I feel it is still close to the beginning. I am in it for the long haul, with treatment that will likely last for years. I won’t feel safe until my brain scan and the blood tests on my immune system return to normal, until the Western blot is negative for Lyme disease, and the myriad symptoms are gone. Well, perhaps not
all of them will disappear. I’m told I should expect to keep the joint problems as a souvenir.

Moreover, simply by having Lyme disease, I have been drawn into the medical schism over both diagnosis and treatment. I now know the greatest danger that borrelia has highlighted: ignorance.

I was ignorant and did not think the original symptoms were important enough to recount. The majority of doctors still believe that Lyme disease is extremely rare, yet each day I hear of more and more people who have it. The medical community believes without question that the ELISA is a fine diagnostic tool and that a short course of antibiotics is all that is needed. That, I learned, is the board position of the California Medical Association. Why did it issue such a dangerous precedent-setting recommendation? Executive staff there told me no proof exists yet that Lyme disease can turn into a persistent infection.

Where does that leave me? I have a persistent infection. And I am also, by nature, quite persistent. I persisted in finding the right doctor, finding the bug that got me. I will do what it takes to get well, ignorance and medical politics be damned. I am in charge of my body now. And thus for the first time I am certain I will get well. Even if I do not recover completely, I am grateful to have made a small improvement, for I am able to write again when the golden days quietly arrive. Writing comes with great effort. I have to think harder. But then again, the world is now a more difficult place for all of us. We all have to think harder.

For the time being, I can accept with aplomb and humor that I do indeed get confused and am not as quick as I once was. When I am disoriented, I know this is not panic born out of fear
of the unknown. The terrorist in my body has been found. Yes, the world to me is still a scary place, but no more so than it is for most people. I am no longer governed by fate and fear. I have hope and, with that, a determination to change what is not right. As a storyteller, I know that if I don’t like the ending, I can write a better one.

My mother and me.

The following have appeared previously, in slightly different form, in the following publications: “How We Knew” in
Harper’s Bazaar
; “Last Week” (under the title “Family Ghosts Hoard Secrets that Bewitch the Living”) in
The New York Times
; “My Grandmother’s Choice” in
Ladies’ Home Journal
and
Life
; “Fish Cheeks” in
Seventeen
; “Dangerous Advice” in
Ski Magazine
; “Midlife Confidential” in
Mid-Life Confidential
(Viking); “Joy Luck and Hollywood” in the
Los Angeles Times
; “Confessions” in
Confession
(PEN/Faulkner Foundation); “Pretty Beyond Belief” in
O, The Oprah Magazine
; “The Most Hateful Words” in
The New Yorker
; “My Love Affair with Vladimir Nabokov” (under the title “Amy Tan’s Personal Best:
Lolita
”) in
Salon
; “Inferior Decorating” (under the title “Tête-à-Tête”) in
Elle Décor
; “Retreat to Reality” (under the title “Weekend Siege”) in
Ski Magazine
; “My Hair, My Face, My Nails” in
Ski Magazine
; “Mother Tongue” in
The Threepenny Review
and
The Best American Essays 1991
(Houghton Mifflin); “The Language of Discretion” in
The State of the Language
(University of California Press); “Angst and the Second Book” (as “Angst and the Second Novel”) in
Publishers Weekly
; “Required Reading and Other Dangerous Subjects” in
The Threepenny Review
and
Harper’s
; and “The Best Stories” in
The Best American Short Stories 1999
(Houghton Mifflin).