Tuesday, November 18, 2008

By DOROTHY KUPCHA LELAND

last updated: July 08, 2008 11:17:32 PM

Three years ago, my then 13-year-old daughter became disabled with a puzzling illness her doctors could neither treat nor explain. She ended up in a wheelchair, with intense bodywide pain and incapacitating symptoms that worsened daily.

The specialists we saw could not pinpoint the cause. At various times, we asked if it could possibly be Lyme disease. They always said, "No, Lyme isn't a problem in California."

That's not true.

Months later, as our daughter got sicker, we stepped outside the medical mainstream and learned she had Lyme disease. Only then did she receive effective treatment that halted her precipitous decline and started her recovery.

That's how we were thrust into the alternate reality that journalist Pamela Weintraub chronicles in her book, "Cure Unknown: Inside the Lyme Epidemic." It is a world that some 200,000 Americans a year tumble into, like Alice down the rabbit hole, arriving at a place where nothing makes sense.

"Cure Unknown" starts with Weintraub's story in the early 1990s when her family moved to a woodsy area of New York. Before long, they fell ill with headaches, swollen knee joints, violent mood swings and crushing fatigue.

Eventually, the Weintraubs found they had contracted Lyme disease from infected ticks. But they learned it only after a forced march through a medical labyrinth that erected barriers to proper diagnosis and treatment. And only after family members had developed chronic, disabling conditions that might never be cured.

Though early treatment is a Lyme patient's best shot at recovery, what Weintraub -- and my own family -- found is that the system is rigged against timely diagnosis. If you fall outside an arbitrarily strict definition of Lyme, failing to test positive on a primitive lab test known to be unreliable, you are denied treatment.

Fortunately, Weintraub responded to nonmainstream treatment. Otherwise, the magazine editor likely could not have dug so deeply into the history, science, personalities and financial dealings that make up the strange landscape of Lyme disease.

Two sides have emerged in "the Lyme wars." Camp one includes the scientists who first described the illness and who control much of the research. They have a stranglehold on how Lyme is defined and treated, having developed restrictive treatment guidelines adopted by the Centers for Disease Control and Prevention. Doctors who buck the status quo can face grave consequences; patients who do not improve after two to four weeks of antibiotics are essentially booted out of the system.

Camp two consists of patients and doctors willing to go beyond mainstream medicine's response. Their treatment is often long-term antibiotics, an anathema to camp one. Camp two's doctors have been demonized by the establishment. Yet, they have a good track record for improving the health of patients.

"Cure Unknown" is a tale of biological complexities, scientific turf battles, human egos and lots of money. It sounds a warning for what is shaping up to be a major public health disaster. Lyme disease now surpasses AIDS in the number of new cases per year in the United States.

Western black-legged ticks, which can be smaller than a poppyseed, have been found in 56 California counties; Lyme-infected ticks have been found in 42. While the CDC confirmed only 107 cases in 2007, other tests found 106 in Santa Clara County alone. The Northern San Joaquin Valley has fewer, with only four reported in Stanislaus in 2007 and three in San Joaquin.

Long thought to be an East Coast malady, Lyme disease has arrived in California -- and it won't go away on its own.

Leland, of Davis, is an author of children's books and advocate for the California Lyme Disease Association.

Lyme disease

What is it? A bacterial infection spread by ticks; early signs can include rash and flulike symptoms including fever, muscle aches, headaches and fatigue. As it progresses, Lyme disease can invade multiple organs, including the brain and nervous system.

Where do you get it? Rare in the Northern San Joaquin Valley, but more common in northern coastal counties. For a risk map and to learn more, go to www.lymedisease.org.

What do you get it from? Western black-legged ticks carry it; they have been found in 56 California counties.

What do I look for? Bull's-eye rash (clear center surrounded by red ring) is most well-known sign. Many who are infected never have such a rash.

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