Ticked off

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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.

Jan Mcmahon and her 14-year-old daughter, Sarah, sit 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 paper-back 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-borne 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 a 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 60-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 antibiotic 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.

"Okay," says Jan, trust etched on her face.

"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 don't even recognize the disease. Other 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 Burrella 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 the 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.

In New Jersey, at least, chronic-Lyme believers are winning the battle of public opinion; their virtually incurable version of Lyme has become embedded into everyday life. On Monday mornings at the Rutgers University agricultural office in Ocean County, a line of people stretching into the parking lot bears witness to the dread. Carrying plastic containers of ticks, they come by the thousands each summer to have their catch checked for Lyme. According to surveys by Cook College's Department of Human Ecology at Rutgers, almost 20 percent of Ocean County's population has abandoned at least one outdoor activity such as gardening or picnicking because of the high stakes associated with getting Lyme. "People say, 'I won't let my son join the Boy Scouts because Boy Scouts means camping, and camping means ticks,'" says Rutgers psychologist William Hallman.

Stories abound of families who go to extremes to tick-proof their property: concrete lawns, decks that circle homes like moats. Married internists John Drulle and Emilia Eiras, who've diag-nosed themselves and their three young children with Lyme and treat hundreds of local residents for the disease, built a four-foot concrete wall around their backyard. The only grass, treated with "more than the recommended amount" of insecticide, Eiras says, borders the inside of the wall. Otherwise, the kids play on a swing set standing on gravel or ride their bikes on a concrete path that loops through the yard in a figure eight.

Nearly a quarter of Ocean County residents have had a blood test for Lyme in the past five years, so ask the man on the street whether he has the disease, and he'll often have an answer. "I tested positive, but I fight it in my own way, eat right, get a lot of exercise. I try not to put a lot of mind into it," says Tim Roehrich, a zoning-code enforcer for the city of Jackson.

Even Deborah Smith-Fluid, the eminently rational entomologist who runs the agricultural extension service and who believes too many of her fellow citizens are unduly fearful of ticks, worries about her Lyme status. "I'm always tired," she says, "but my blood test was negative."

According to the CDC, a negative blood test invariably means you don't have Lyme, but Dorothy Pietrucha, along with increasing numbers of doctors nationwide, disagrees. Over the past decade she's treated hundreds of children for Lyme, a fair number of whom, like Smith-Fiola, tested negative. Despite CDC urgings that Lyme diagnosis be reserved for patients who either consistently test positive or have a characteristic clinical history of the disease, Pietrucha says there is no foolproof formula for diagnosing or treating Lyme. She just goes by her patients' symptoms and how they respond. And, Pietrucha says, many of the children she treats with months or occasionally years of antibiotics do get better. As for the risks, she denies that her treatments unnecessarily endanger patients. The CDC, she points out, reviewed files for more than 1,300 patients at Jersey Shore Medical Center to find 47 with complications from the IV.

Pietrucha says government epidemiologists underestimate the bacteria's ability to hide from detection by blood tests or from initial antibiotic treatment. Short-term antibiotics can fail, because the bacteria gravitate to places that receive minimal blood-supply-knee tendons, for example--or temporarily burrow inside the body's cells. Academic researchers have themselves turned up Lyme patients who remain infected after a month of antibiotics, she says, which is why she sometimes prescribes longer courses.

Even if they won't admit it for fear of reprisals, many doctors back her approach, Pietrucha says. She gets patients from as far away as Florida, California, and Minnesota and says referring doctors have told her: "In my hospital I would be laughed at if I ever admitted this patient to treat him for Lyme. So if you think he needs IV, just do it."

Why do so many doctors and public officials doubt chronic Lyme? One answer, says Pietrucha, is that Lyme afflicts middle-class suburbanites. "Turn on the television. You show me how many middle-class people's problems you see. Middle-class people foot the bill. They're the Silent Majority. But Lyme disease is really an eye-opener for how little consideration they've gotten."

Indeed, the most active (although anything-but-silent) members of the Lyme movement are middle-class homemakers--patients and parents of children with Lyme disease. They hold walkathons and oceanfront benefits, and lobby schools, state legislatures, even Congress for recognition and money. It's a campaign that can become all-consuming--and bitterly personal.

Jersey shore Lyme activist Pat Smith felt compelled to make a videotape of her daughter suffering what the family believes is a Lyme-induced seizure--evidence for insurers who might question Colleen's diagnosis. For a harrowing few minutes, Colleen wails, kicks, and rears up from the bed. "Daddy, I'm burning up," she shrieks. Then, "Oh, God . . . I can't breathe." Another parent, Linda Pousson, defends her 18-year-old daughter's Lyme diagnosis by carrying in her purse a dead deer tick taped to an index card. "It's to show people how small the tick is," says the hairdresser and policeman's wife, who canceled a 25th wedding anniversary cruise, which she had saved for since her wedding day, after her daughter became ill. "Alissa could have been bitten without realizing it."

The children themselves clash with nonbelievers. "Oh, you're just faking it," a boy treated in the conventional manner taunted one of Pietrucha's patients, a seventh-grade girl who hasn't at-tended school full-time for four years. "His doctor told him three weeks on IV and you're cured," the girl explains wearily.

The Lyme community's war mentality reaches its peak in support groups, an estimated 250 of which meet weekly in schools and churches around the country. The talk may be of "Lyme brain," when a woman with the disease forgets, for example, that she put a teakettle on the stove or, infinitely more scary, forgets her name. Someone may mention a friend who acquired the disease from sand fleas, which becomes an occasion to berate government health officials who won't accept the Lyme community's assertion that myriad insects besides the deer tick carry the disease. But invariably the conversation turns to a species of vermin that chronic-Lyme patients loathe more than ticks: "ivory tower" medical researchers whose blanket rejection of chronic Lyme has left them derided as hypochondriacs.

In New Jersey, one name resonates above them all. "We should give some of that infected blood to Lenny," joked one attendee at a meeting last year. Added another, "Yeah, let's give Lenny a basket of ticks."

If Pietrucha is the mother superior of New Jersey's chronic Lyme patients, then rheumatologist Leonard Sigal is their Judas, betraying them with public denunciations. The wiry, bearded physician directs a regional Lyme referral center at the University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School, where, he says, the staff spend most of their time trying to convince people they don't have Lyme. Sigal regularly publishes medical research and essays detailing the misdiagnosis of Lyme and calls chronic patients' habit of comparing Lyme to AIDS "an abomination." He also reviews about a dozen cases a year trying to confirm Lyme diagnosis for insurers--most of whom now routinely deny coverage for long-term antibiotics, which cost an average of $2,000 a week.

Articulate verging on bombastic, the rheumatologist is magnanimous when he first begins to discuss the thrashing he takes in the chronic-Lyme community. He smiles when told that he's known, less than affectionately, as "Lenny." "That's one of the joys of being in the United States," Sigal says, sitting in a room that adjoins his busy office at the medical school in New Brunswick, a 45-minute drive north of the McMahons'. "Everybody's free to express an opinion." But he goes ballistic at their suggestion that he profits from the misery of others.

"Utter balderdash, utter poppycock. The concept that I say what I say or do what I do in order to gain financially is about the same as the degree of disrespect they show me by calling me 'Lenny.'"

Most physicians, although more circumspect than Sigal, are foursquare behind him. Medical researchers from Harvard, Yale, the University of Texas, and the State University of New York take issue with the chronic-Lyme community on two grounds. First, they say that many Lyme patients were simply misdiagnosed with the disease; they don't have the rash, the positive blood test, the measurable joint or neurologic abnormalities characteristic of Lyme. In his review of 375 patients hospitalized for Lyme at Jersey Shore, even Elliot Frank, the hospital's chief of infectious diseases, found that very few had typical Lyme symptoms.

Second, among actual Lyme patients, the spirochete survives antibiotic treatment in only rare cases and then always announces itself. "Patients show objective clinical evidence: a big swollen knee, for example, or a diminished memory that can be detected with neurologic tests," says Mark Klempner, an infectious disease specialist at Tufts University Medical School in Boston.

Some patients are tricked into believing they're still infected because they suffer body aches and fatigue as aftereffects of Lyme, the researchers say. Still others, especially people infected for years before being treated, may suffer permanent damage. One study found that six years after diagnosis, patients were more likely than a control group to experience mild memory loss and joint pain. But once treated, researchers say, patients' blood tests invariably show no bacteria. Ana antibiotics are useless if there's no bug for them to quash.

The high rate of positive blood-test results that prove to be wrong--approximately 5 percent, and higher at some labs-primes Americans to fall in with the chronic-Lyme crowd, say researchers. For instance, if 220,000 residents of Ocean and Monmouth counties have been tested for Lyme in the past five years, as the Rutgers survey found, that would mean 11,000 people wrongly assume they have Lyme--a shocking number, considering that the state, using the clinical standards advocated by the CDC, confirmed only 1,294 Lyme cases in the two counties in that same period. "I'm concerned about the patient who walks into the doctor's office with a hangnail and a positive blood test and suddenly gets diagnosed with Lyme," Sigal says. In one year alone, a half-million New Jersey residents took blood tests for Lyme.

It doesn't help matters, the university doctors say, that from New Jersey to Colorado-where the CDC says only four people have contracted Lyme in the last ten years--home Iv treatment companies run newspaper ads that list dozens of everyday symptoms and invite readers to call toll-free hotlines (800/TICKBITE in New Jersey) for physician referrals. While many doctors, Pietrucha among them, don't accept payment from home-IV companies, others do. Insurers sued one Ocean County internist for intentionally misdiagnosing Lyme, then referring patients to an IV company in which he owned shares. In another case, seven home-infusion companies paid a New Jersey doctor $150 to $175 a week for each patient he referred to them. The state medical board suspended him for falsifying Lyme diagnoses.

Nonetheless, Sigal says, "a lot of good, honest doctors are prescribing extended IV treatments because they think it's the right thing to do." Long-term antibiotics may make people feel better through a placebo effect, he says, but it's still wasteful, dangerous medicine. In an ironic turnaround from when Lyme was usually missed, most doctors think dozens of ailments are now being mistakenly labeled Lyme, among them chronic fatigue syndrome, a musculoskeletal pain syndrome called fibromyalgia, and depression. Another possibility: mass anxiety. Sigal suggests that may be what occurred at Jersey Shore Medical Center in 1991 and 1992, when more than a thousand patients were hospitalized for Lyme, including Sarah and Sheila McMahon.

A year and a half ago, Jan quit her first job in 18 years of marriage, as a nursery school teacher, to devote her self to the girls' care. "It's a full-time job to stay well," she says. Like those of many Lyme patients here, the children's symptoms are less than classic. They've had both positive and negative test results; they never noticed a bull's-eye rash following a tick bite; and even though Pietrucha treats the girls for neurological problems, she doesn't have the clinical or laboratory proof of active Lyme that most doctors require. But Jan knows what she sees: When her girls' vision blurs, their other symptoms--headaches and fatigue that keep them in bed for days--rush back. "We've tried the orals, everything, but the Iv is the only thing that really cleans my girls out."

Jan herself was diagnosed with Lyme just after Sarah, and believes she has lived with the disease since she was nine. "Tuesday I got a tick in me," she wrote home from summer camp in 1960. "They put vasaline [sic] and said it would come out." In her case, symptoms wax and wane, but at times she's been so exhausted, she says, she's had to crawl downstairs in the morning on her hands and knees, reach for an antibiotic from the kitchen counter, and lie on the floor until she feels better.

"Sometimes Jan's descriptions are a little dramatic," says her family practitioner, Susan Dick, who notes that it's impossible for antibiotics to work that fast. "But I don't think the entire effect that she gets from her antibiotic is placebo."

The one clear piece of proof of their girls' Lyme, say the McMahons, is their vision problems. Jan's husband, Steve, says even he doubted that the girls had Lyme until they began complaining of blurry and narrowed eyesight. "In addition to all the vague symptoms, both of our kids have had this vision field loss, which is very quantifiable," says Steve, a trim, pleasant-looking man who stays fit with 6:00 A.M. Nordic Track workouts. "We've had the good luck of being able to go to a doctor who can tell us, 'Yes, you do have a problem.'"

Indeed, the large coterie of specialists who've examined the girls have ruled out other serious disorders that could cause their symptoms, including the optic swelling. And though attributing the loss of vision to Lyme-induced papilledema is controversial, neither the McMahons' local ophthalmologist nor the Philadelphia neurophthalmologist, Robert Sergott, challenged Pietrucha's diagnosis. "This is Lyme, it's nothing else," says Sergott.

Whatever is ailing Jan McMahon and her children, lumping their symptoms under the Lyme umbrella provides only cold comfort. After all, chronic Lyme infection, if it exists, remains largely a mystery, leaving even fellow travelers like Jan and her daughters debating where the disease ends and where other maladies, like a cold or a sore knee, begin. As Jan and Sarah sit in the hospital waiting room after Sarah's morning appointment, they argue about Lyme.

"Mom, every kid gets sore throats and earaches," groans Sarah, who's fed up with hearing her mother blame Lyme for all her childhood illnesses.

"You were always going to the allergist," Jan says. "Your knees hurt. You had that thing on your lungs."

"Yeah, Mom, I had pneumonia. You're taking every little sore throat I ever had and saying, 'That's Lyme.'"

This is serious business, this absolute conviction that your children have Lyme, and that IV antibiotics are the only cure. A home-infusion nurse examines Sheila McMahon in the well-disguised sickroom that is her parents' master bedroom. Next to the double bed is a yellow antique armoire that in this well-decorated home might be expected to contain stacks of Ralph Lauren sheets. Instead, strewn across the shelves are rolls of medical tape, iodine pads, plastic bags of antibiotics, and tiny syringes. In the corner of the room sits a specially designed red trash can bulging with medical waste. Sheila's on the same indefinite course of antibiotic treatment that Sarah underwent for 11 months. But at least Sarah's not returning to the IV. By the time of the eye appointment Pietrucha recommended, her eyesight was fine, a recovery Jan chalked up to the Biaxin the doctor prescribed.

Although 12 years old, Sheila has not yet developed the hypermodesty of adolescence; she cheerfully strips off her "Beauty and the Beast" nightshirt for the nurse. A short tube flops against her bare, narrow chest, and when the section of plastic tubing is removed, the catheter exit-site is revealed, a tiny hole though which antibiotics are pumped directly into the girl's heart.

For four months, since the ophthalmologist detected the peripheral vision problems, nurse Cathleen Kelly has visited twice a week to monitor Sheila's catheter and her tolerance of the antibiotics. Seated on the edge of the bed, Sheila unself-consciously leans her head back to receive the nurse's ministrations. Kinky brown hair hanging loose behind her, the girl looks as if she's sitting on a bench on the boardwalk, her face turned up to the sun.

Sheila is blissfully unaware of how vulnerable the surgically implanted broviac catheter makes her, how quickly an undetected infection could travel to her heart. (Doctors immediately removed Sheila's first catheter upon discovering a fungus growing in it.) But Jan and Steve know this, and that they would choose this treatment for both of their daughters indicates how grave a threat they perceive Lyme to be. "I'd rather risk the broviac than let the spirochetes take over," Jan says. "They can go anywhere and destroy anything."

That's the kind of sweeping statement that usually sparks a skirmish between mother and daughters. Indeed, a few weeks later Sheila refuses to submit to her afternoon treatment, pleading for a switch to oral antibiotics. "She says she's having pain where the antibiotics are going in," Jan says. "Mentally, she's worn out, too. She started to cry in the afternoons when she had to come in from playing to be hooked up."

The next day, Jan takes Sheila to Pietrucha, who supports the girl's request to jettison the IV. "I never really know when to quit, so by my being forced, it makes the decision for us," Jan says. While relieved that neither of her daughters will be tethered to an IV line for the summer, Jan doesn't for a minute believe her family's Lyme horror story is over.

"Let's see how long it stays away this time," Jan says.

PHOTO: Along with their doctors, Jan McMahon and her daughters, Sheila, 12, and Sarah, 14, are convinced that Lyme disease Is hiding inside them, always threatening to strike again.

PHOTO: To ward off ticks, doctors John Drulle and Emilla Elras made their yard an island of concrete. Says Elras, "The kids get, like, capital punishment if they go in the woods."

PHOTO: Rheumatologist Leonard Sigal, the head of a Lyme referral center, spends most of his time trying to convince people they don't have Lyme.

PHOTO: For four months, Sheila Mcmahon sat three times a day to have antibiotics pumped directly into her heart. Then she told her mother, no more.

~~~~~~~~

By Laurie Abraham

Photographs by ANTONIN KRATOCHVIL

Laurie Abraham is a writer in Washington, D.C., and author of Mama Might Be Better Off Dead: The Failure of Health Care in Urban America.

KEEPING CLEAR OF LYME
According to the Centers for Disease Control and Prevention, Lyme disease is an extremely rare ailment. With 57,000 documented cases in the past ten years, they say, only one of every 4,300 Americans has gotten it.

But even the CDC, whose Lyme statistics are widely criticized as low, agrees that for Americans in the 12 states where nearly all infected deer ticks dwell, the risks are higher. If you live or take outdoor vacations in Rhode Island, Massachusetts, Connecticut, New York, New Jersey, Pennsylvania, Delaware, Maryland, Michigan, Minnesota, Wisconsin, and northern California, here are some tips to help you avoid getting the disease.

Know where the ticks are. Make yourself aware of particular hot spots, if any, in your region-wooded, grassy, or brushy parks or wildernesses where infected ticks have been found. Call your local health department for specific information.

Pay special heed in late spring and summer. Lyme-carrying ticks are most dangerous when they are just beginning their second (and last) year of life. That's when they're big enough to attach themselves to humans but too small--no bigger than a pinhead--to be easily detected.

Dress smart. In tick-infested areas, wear long-sleeved shirts and long pants tucked into socks, in light colors for easier detection, and spray insect repellent containing bEET on clothes and skin.

Check your whole body. Once indoors, carefully inspect for ticks. Most are found below the waist, though they can climb as high as their host's scalp; consider no spot out of reach for this tiny insect. Many families hold a nightly tick check for kids from mid-April through September.

Remove ticks as soon as possible. Most experts think a tick must be attached to a human host for at least six hours to pass on Lyme bacteria. If you find one, use tweezers to grasp it as close to the skin as possible, then pull slowly, trying not to crush the tick. There are many old wives' tales about tick removal: Coat the tick in Vaseline. Prod it with a hot match. Turn it counterclockwise. They're all ineffective.

Watch for symptoms after getting bitten. The most widely accepted early sign of Lyme is a bull's-eye rash, a patch of clear skin surrounded by a circular red rash, darkest at the outer edges. Other early symptoms, occurring from days to weeks after a bite, can include fatigue, chills, headache, and muscle and joint aches. If you have any of those, visit a doctor. Though some doctors believe anyone bitten by a tick should get antibiotics before showing any symptoms, other doctors look for positive results of either a clinical examination or a blood test before prescribing them.--L.A.

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