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 antibiotic treatment.

Like many late-stage neurological Lyme patients, it took a while for symptoms to begin to lift. A day after starting antibiotic treatment, I became feverish and ill with the classic Jarisch-Herxheimer reaction. A month later, the joint and muscle pain eased up somewhat. Two months, and some of the fog finally lifted, and I frantically wrote for long days, fearful that the curtain would come down again. After six months, I had no muscle stiffness or joint pain remaining. Today, I can once again write fiction, speak at conferences, and walk in my neighborhood alone and without anxiety and panic. I’ve been under treatment now for over a year. I consider myself 85% improved from where I was a year ago. I still have what I call memory black holes when I am tired, and I have neuropathy in my feet, which at times becomes too painful for me to walk more than a block. I know that my late diagnosis means I am in this for years, perhaps even for life. But at least I have my mind back.

As a patient, I have joined a club of people with a stigmatized disease that many doctors do not want to treat. While I have been lucky enough to find a doctor who is willing to provide open-ended treatment -and I have the means to pay for it- many of my fellow Lyme patients have gone without appropriate care. As a consequence, they have lost their health, their jobs, their homes, their marriages, and even their lives.

I now know the greatest harm borrelia has caused. It is ignorance. Lyme disease is more prevalent than most people think. It is more difficult to diagnose than most doctors think. It requires more research before we know how it can be adequately treated, and one day, cured.

In the meantime, my advice to friends and family is to be aware and be informed. Realize that Lyme disease has been reported in every state except Montana. The CDC estimates the actual numbers of those infected each year is at least tenfold of what is documented as cases. Some Lyme specialists believe the numbers are even much higher than that.

And if you are bitten by a tick and suspect you have been infected, go see a Lyme-literate physician. Get treated early and adequately. Don’t wait, as I did, and let a treatable disease turn into a chronic one.

For more information on Lyme Disease, a Lyme-literate physician, or LymeAid4Kids, see: www.LymeDiseaseAssociation.org

For information on research on Lyme Disease, see www.ilads.org