Tan says she is “not terribly angry with any of my doctors” for having missed her diagnosis, though the roster included her primary care physician, an endocrinologist, a sleep-disorder specialist, two neurologists, a cardiologist and an orthopedic surgeon. “They were doing the best they could.”
“I’m angry at the California Medical Association,” she says, “because they have a board policy that recommends that all Lyme disease patients be treated with 10 days of antibiotics. I’m angry that they perpetuate the myth that it’s rare, easily tested and easy to treat.
”I’m mad at insurance policies.... I’m a typical long-term Lyme patient who’s seen a lot of doctors and had a lot of expensive tests done,” Tan continues. While she could afford to spend more than $50,000 on diagnostic tests before learning what was ailing her, ”I’m luckier than most—there are many who have it far worse than I do.”
”I know people who’ve lost homes, everything they have. I’m mad at the arbitrary saying that it’s two weeks’ treatment regardless of what’s happening to you.”
Nearly half a year before Tan’s hallucinations began, she had returned home after a four-month, trans-oceanic book tour for her novel “The Bonesetter’s Daughter.” The persistent fatigue plaguing her before she started her itinerary had become life-consuming.
The day-long sleep that she first wrote off to jet lag didn’t suffice; in the weeks that followed, she would sleep for 12 to 20 hours a day. Even more disturbing were the trembles that punctuated her sleep, waking her every two or three hours with what she called “Dolby Digital Syndrome”—a feeling of constant vibration, like reverberation from a bass-heavy stereo.
When she shortly began waking each day with a sore neck, Tan bought a new buckwheat pillow. She tried another type, and still another, adding everything from Tempur-Pedic foam to a U-shaped neck roll.
As the weeks turned into months, the mental toll turned from an extended writer’s block to an inability to maintain concentration or short-term memory.
“By page three or four [of her writing], I was unable to recall anything and had to begin anew,” she says. At the dinner parties, “I often couldn’t keep up with the repartee.... I nodded and laughed at the moments when everyone else did.”
She decided to consult a psychiatrist for the first time in nearly 20 years; the doctor in turn suggested she also get a complete medical workup.
Finally, after comparing what she knew with what other patients reported on the ILADS Web site (www.ilads.org), Tan discovered Rafael Stricker, a Lyme specialist in San Francisco.
Stricker says Tan’s “clinical symptoms and history were very suggestive: striking psychiatric problems and hallucinations, which you can see with Lyme disease.”
He tested her with a Western Blot, and had it analyzed by IGeneX.
Stricker says Tan has tested positively on the Western Blot five times in a row. Among the 16 antigen bands that IGeneX identifies, her tests “have been pretty uniform,” with positives for seven or eight bands each time. She has consistently tested positive for two of the three bands the CDC considers accurate indicators of Lyme, he says. He considers her diagnosis conclusive.
Stricker points out that as a public health agency, the CDC is interested mainly in surveillance and less in clinical applications of tests. “They’re not as concerned in missing something, while I want a test that works for my particular patient’s diagnosis.”
The CDC’s Mead confirms that the agency’s analysis of the Western Blot requires a minimum of two of the three bands for a positive diagnosis, and that “this is a surveillance-case definition,” which is useful for tracking the disease but may not be sufficient for a specific patient.
“It’s a balancing act,” he says. “It’s true that to a certain extent [we] have different objectives. A clinician can treat, just in case, to help his patient. Nevertheless, there can be problems with over-treatment [with long-term, powerful antibiotics]. Overall it’s not helpful to treat someone without a disease.”
Stricker recently changed Tan’s antibiotic medication to Flagyl (metronidazole) from doxycycline. He says recovery is usually progressive: “Usually when they feel better, they stay better, though there’s possibility of relapse. Sometimes it requires months of treatment for a complete cure,” he says. “Sometimes it requires years.”
That Tan’s answer hadn’t been discovered through the CDC’s diagnostic protocols doesn’t surprise Edlow. After all, he says, the Borrelia burgdorferi spirochetes “are weird bugs. Part of the way that they evade the immune system is to morph, or change themselves to appear like a new bug to the immune system. Or they don’t. Or else patients have one or another or more than one at the same time. It gets kind of tricky.”
Tan meanwhile argues that Lyme disease patients can’t afford to wait for the science to inch its way forward. Her imagination still reels at the thought she was tested for both syphilis (after 29 years of marriage) and Lou Gehrig’s disease before her doctors considered her for what the CDC terms “the leading cause of vector-borne infectious illness in the U.S.”
“I’ve never met a single person in my lifetime who had ALS, but they tested me for that before Lyme disease,” Tan adds. “It’s not the way the medical community should be dealing with these very real problems that people are having.”
Imputing her symptoms to age strikes her as no more logical.
“Did most baby boomers lose their hair in clumps? Did [they] read e-mails and respond at length, then have no memory of doing either? Were they amazed to read unfamiliar pages of stories they had evidently composed?... Did they become lost in their own neighborhoods, unable to recognize any familiar landmarks, too mortified to ask for help?”
She concludes in an essay from her upcoming book “The Opposite of Fate”: “I am in this for the long haul, with treatment that will likely last for years. I won’t feel safe until the scan of my brain and blood tests on my immune system return to normal, until the Western Blot is negative for Lyme disease, and my myriad symptoms are gone... By having Lyme disease, I have automatically been drawn into the medical schism over both its diagnosis and treatment.”
“I now know what is the greatest damage that Borrelia has caused: It is ignorance.”
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