Thousands of New Jersey parents felt relief when their sick children were finally diagnosed with Lyme disease. Then the CDC called the epidemic bogus, and all hell broke loose.
By Laurie Abraham
Jan McMahon and her 14-year-old daughter, Sarah, sir alone in a dimly lit waiting room near the pediatrics unit at Jersey Shore Hospital. Sarah has her nose in a book, one of the paperback horror novels she can devour in just a day home sick from school. Jan is too upset to read the book she grabbed before heading out for the 8:30 a.m. doctor's appointment. Her eyes and nose pink from an early morning cry, she's frightened by the possibility that Sarah's Lyme disease is back.
In addition to Sarah, Jan and her younger daughter, Sheila, have been diagnosed with Lyme. Like many of her neighbors and friends along the New Jersey shore, Jan is convinced that the tick-born bacteria that cause the disease may lurk in their bodies indefinitely, flaring up without warning, making life miserable, and sometimes damaging the heart, brain, and eyes. Sarah had been too sick to go to school for much of fifth grade and all of sixth, but the last two years had been good for her. Gabbing on her own phone line for hours each evening, earning As and Bs, and making plans to spend the summer at the beach, Sarah had begun to seem, well, normal. But then a day ago, she informed her mother that her vision was blurry again.
Pediatric neurologist Dorothy Pietrucha clatters into the room pushing a cart filled with medical charts. Trailed by three doctors-in-training, Pietrucha has a commanding presence that doesn't allow for despair or adolescent ennui. Mother and daughter sit up straight, bring their knees together, and hang on to each of the physician's rushed words. With her square jaw and cap of brown hair, the 52-year-old Pietrucha looks like mother superior in street clothes.
It was Pietrucha who first treated the McMahon girls' Lyme. From first grade on, both girls suffered constantly from strep, earaches, coughs allergies, and headaches. The year the family lived on a wooded estate, Jan had removed ticks from both little girls, and in time she began to suspect Lyme. "Sarah had a tick on her face for a week, and I thought it was a new freckle," Jan says. When they became her patients, Pietrucha put the two girls on three-week courses of oral antibiotics, but they quickly relapsed.
It was finally a frightening eye problem — a loss of peripheral vision caused by a swelling of the optic nerve, called papilledema — that led Pietrucha to put Sarah on intravenous antibiotics indefinitely. For 11 months, until the surgically implanted IV catheter dislodged while she was swimming, Sarah sat three times every day for a 50-minute drip. Jan and her husband, Steve, credit the IV for clearing up Sarah's health and eyesight to the point that they'd just taken her off oral antibiotics, too.
But now this scare. With Sarah perched on an end table in the empty waiting room, Pietrucha quickly examines her eyes with a lighted scope, then re-prescribes the oral antibiotics Biaxin. When Jan asks why Sarah can't go back on the IV, Pietrucha explains that she wants a Philadelphia specialist to rule out other possible eye or brain disorders. "Call me over the weekend and let me know how she's doing," Pietrucha says, "You have my home phone number, right?"
"Yeah… okay, thanks," Jan murmurs. "But if this is still going on Friday, can we start her on the IV?"
"Let's see what happens," Pietrucha says.
"It takes a brilliant, brilliant doctor to figure out Lyme," Jan says later, speaking of Pietrucha. "If we moved anywhere else in the United States, we really would have been in trouble; most doctors should have the guts to do the stuff she does."
Guts is one word for it. In late 1993, the federal Centers for Disease Control and Prevention released a study of 47 Jersey Shore Medical Center patients — many of them children treated by Pietrucha — who had developed bloodstream infections and gallbladder disease from long-term IV antibiotics. The gist of the CDC opinion: Not only are protracted IV treatments extremely risky, but most of these patients don't have Lyme disease.
In early May on the Jersey shore, new leaves shoot from maples and oaks, and fresh grass rises from the season's first mow. All is a glossy, growing, almost glowing green, the neon-green that bedazzles winter-weary eyes. But while the area's inhabitants once gazed upon the Garden State's verdancy with the innocent eyes of Victorians regarding English meadows, the greenery has come to represent something sinister: a breeding ground for Lyme-carrying Ixodes scapularus ticks.
Ever since it was first identified almost 20 years ago, when Yale rheumatologist Allen Steere linked the deer tick to an epidemic of juvenile arthritis in Old Lyme, Connecticut, Lyme disease has baffled patients and doctors. A few things are known for sure. Lyme is caused by corkscrew-shaped Borrelia burgdorferi bacteria, similar to the spirochetal germs that cause syphilis. The bacteria travel through the bloodstream and can attack the heart or the brain. Because blood tests to detect the bacteria are unreliable and Lyme has symptoms from meningitis and arthritis to fatigue, poor vision, irregular heartbeat, memory loss, headaches, and depression, unknowing victims have visited a dozen or more doctors before one recognized what they really have.
Once diagnosed, patients get antibiotic treatment to destroy the bacteria, and for countless Lyme patients nationwide, the drugs have been a quick cure. But here in the 1,000 square miles of woodlands, residential developments, and seaside towns that make up New Jersey's Monmouth and Ocean counties, thousands of patients who've been treated are still sick. And a brawl is raging within families, communities, and the medical profession over whether they've really got Lyme.
The bad blood isn't confined to the Jersey shore; from Maine to California, patients and doctors are caught up in a medical melee. On one side: doctors and patients who insist Lyme can be a chronic infectious disease requiring a lifetime of monitoring and antibiotics. On the other side: most of the major players of mainstream medicine — physicians, researchers, insurers, and the CDC — who argue that the bacteria are almost always wiped out with a month of antibiotics.