Borne by a poppy-seed-size pest, Lyme disease is causing serious harm, and increasing alarm, as it spreads across the country
"I used to be ignored at parties because I was 'the Lyme disease bore'," says Dr. James Katzel, who has recorded 100 cases of the illness in the northern California town of Potter Valley (population. 1,500). "Now I'm the center of attention because everyone wants to know about it."
Derrill Cleary is selling her house, which fronts on acres of woodland in rural Colts Neck, N.J. "I don't want to be surrounded by the oasis of nature anymore, "says the registered nurse, whose 5-year-old son contracted Lyme disease. "Every time you go out you have to check for ticks. I feel like I'm taking a chance every day."
In the popular beach community of Fire Island, N.Y., it's the hot topic this season. In Appleton, Wis., parents wonder whether they should send their kids to camp or on nature hikes. And in Big Pine Key, Fla., Don Gerberich, 36, at last has a diagnosis for the baffling malady that has afflicted him for more than a year. "They don't ever expect me to recover 100 percent," he says, "but now at least I know it's a disease with a name."
The name is Lyme disease, and the time to catch it is right now-possibly in your own backyard. Caused by a corkscrew-shape organism called a spirochete, the disease is spread by infected ticks that live in and near wooded areas, tall grass and brush. They lead a parasitic life, feeding on a variety of mammals, including deer, mice and people. For reasons not entirely understood, the ticks-and the disease-are on the march, spreading rapidly throughout the country. Lyme is not a fatal disease, but it can be debilitating, emotionally as well as physically. Among its symptoms: arthritis, heart arrhythmias, facial palsy, severe headaches and loss of sensation. Sometimes, the joint and neurological damage it causes are irreversible.
The disease was first identified in Lyme, Conn., in 1975, by rheumatologist Dr. Allen Steere, then at Yale, when he analyzed an unusual cluster of arthritis cases in the town. Lyme has now shown up in 43 states, with the heaviest concentrations in the Northeast, the upper Midwest and along the northern California coast. Last year 5,000 cases were officially tallied, but in most states doctors aren't required to report Lyme, and some researchers think the actual total could be five to 10 times that high. "We all assume Lyme is under-reported," says Dr. Ted Tsai of the Centers for Disease Control.
Lyme is also found abroad, especially in Germany and Scandinavia, as well as China and the Soviet Union. Cases have been recorded in Europe since the early 1900s, so some epidemiologists speculate that the spirochete came to this country on ticks that hitched a ride on birds. Migratory birds may also partially account for Lyme's rapid spread within the United States.
Last year was a bad year for Lyme, and 1989 looks like the worst year yet. "We're definitely seeing a spread of the disease in many states," says Dr. Willy Burgdorfer of the Rocky Mountain Laboratories in Montana, who first isolated the Lyme spirochete in 1982. Texas, for example, which had no cases when it first began monitoring the disease, now has about 50 each year, and Julie Rawlings of the state health department thinks that number is just a fraction of actual incidence.
The tick that causes the disease in the Northeast and Midwest, Ixodes dammini often no bigger than a poppy seed, feeds hungrily during warm weather. The peak months for human infection are June and July, but already the numbers for this year show a staggering increase over 1988. In New York, Westchester County, which together with Suffolk County accounts for 40 percent of reported cases nationwide, has counted 467 cases this year, a fourfold increase over 1988. New Jersey, which had 1,400 cases last year, expects to be hit hard: one county has already reported 225 cases for 1989. And in Connecticut, where health officials estimate only three out of every 10 cases are reported, figures are up 40 percent over last year.
After a slow start, Americans are finally starting to recognize the threat of Lyme disease. "I have seen attitudes toward Lyme change enormously," says Potter Valley's Katzel, "and I can only compare the growing awareness of its causes and dangers with the awareness of AIDS in the gay community." Due to rising awareness and anxiety Wisconsin's Marshfield Clinic last year performed 35,000 blood tests for Lyme; only about 300 proved positive. "Everyone in Wisconsin wants to be tested for Lyme disease," says Marshfield microbiologist Dr. Paul Mitchell. The Lyme Borreliosis Foundation, Inc. (named after the disease organism, Borrelia burgdorferi) has received 14,000 calls at its Tolland, Conn., headquarters since it was formed in March 1988; a Westchester hot line received 2,000 calls in the first three months of this year.
In some areas, concern about Lyme has risen to a fever pitch. "We are in the midst of two epidemics-Lyme disease and Lymedisease hysteria," says Dr. Leonard Sigal, director of the Lyme Disease Center at the Robert Wood Johnson Medical School in New Brunswick, N.J. "It dominates our conversations," says Luke Pittoni, copresident of the parent-teacher council in Stamford, Conn. "People are petrified of it. It's almost a panic situation."
Experts agree that panic is unwarranted, but the disease, something of a medical conundrum, can be frightening. Its symptoms resemble so many other diseases that-like spirochete-caused syphilis before it-Lyme has been called "the great masquerader." And because available blood tests don't always confirm Lyme, or rule it out, arriving at a diagnosis can be a prolonged and agonizing ordeal. Linda Hanner of Delano, Minn., spent six years and saw 29 specialists before she finally found out she had Lyme. Vickie Womack, a former schoolteacher, was bitten by a tick while chopping wood near her home in Mendocino County, Calif. It took her three years and $20,000 in medical bills before she got a diagnosis. "It has been frustrating to be termed a hypochondriac," she says, "and to be told by doctors that what you really need is a psychiatrist."
One reason Lyme is such a challenge for physicians is that it doesn't follow set rules. "There are so many different possible symptoms," says Steere, now at Tufts New England Medical Center. "They are intermittent and they change." All they have in common is a bite from an infected tick, which may crawl around for hours on the victim's body, looking for a spot to park and feed. The tick deposits the spirochetes in a convenient capillary, often after feasting on the host's blood for 12 to 24 hours. People don't realize the meal is underway because the tick, usually in the second, nymphal, stage of its development, is only about the size of a comma. "Look for a freckle that moves," advises one health official.
Bull's-eye: Most victims never see or feel that freckle, and don't know they've been bitten until they notice a characteristic rash, which may appear any time from two days to five weeks after the bloodletting. Or the rash may never appear at all; at least 25 percent of all patients never get one. For those who do, it often looks like a bull's-eye: an expanding red circle surrounding a lighter area, frequently with a small welt in the center.
Often the first sign of the disease is a flulike illness, with fever, headache, extreme fatigue and stiff neck. If antibiotics are prescribed immediately, most patients recover fully. Adults usually are given tetracycline or doxycycline; penicillin is used for children and pregnant women. Whether or not more serious symptoms develop later (they can in spite of the antibiotics) probably depends on genetic makeup and the vitality and virulence of the spirochetes.
As with other infectious diseases, Lyme reveals itself through antibodies in the blood. But they don't appear in quantity for four to six weeks, so standard blood tests for Lyme are useless in the earliest stage. In fact, the human immune system often mounts a very weak response to Lyme, explains University of Minnesota microbiologist Russell Johnson. That makes antibodies hard to detect at any stage, and can produce "false negative" results, especially if the patient has taken antibiotics for any reason. Dr. Raymond Dattwyler and his colleagues at the State University of New York's Lyme Disease Center in Stonybrook developed a test that measures the response of immune-system cells called T-cells; it may detect signs of disease even in patients who have already taken antibiotics.
Several new blood tests have just been approved by the Food and Drug Administration, including one that can be performed in the doctor's office; results take as little as seven minutes. Already in the works is a new generation of tests that should be more precise. Russell Johnson's Minnesota team is working on a test based on its finding that Lyme spirochetes are present in urine, even in early stages of the disease.
If Lyme is not treated promptly, the disease may move into the progressive stage, with more distressing symptoms. Christina Eliopoulous, a New York free-lance writer, was bitten by a tick while on assignment in Stamford, but didn't notice any symptoms until several months later. "I couldn't walk four blocks [before having] to sit down," she recalls. "I was disoriented and I felt very weak." Despite massive doses of the antibiotic tetracycline, Eliopoulous developed numbness in her face and arthritis in her fingers that forced her to stop working. "Some days I'd wake up and my hands would be like claws," she says. "I couldn't pick up a fork." Later, Eliopoulous developed chest pains and an irregular heartbeat. It took her six months to recover, and she still feels occasional numbness. Nowadays she steers clear of woods, and reflexively brushes her hands and legs after walking across a lawn.
Because the Lyme spirochete sometimes hides out in the central nervous system, where it evades the effects of most antibiotics and the body's own immune response, the neurological symptoms are often the most persistent. Patients can experience visual disturbances, numbness and tingling (leading to suspicion of multiple sclerosis), facial paralysis and seizures. Some patients who become confused and forgetful have been misdiagnosed as having Alzheimer's disease. Lyme can also inflict cardiac damage; some patients require a temporary pacemaker. It can cause encephalitis and meningitis, inflammation of the brain tissue itself. Arthritis, which afflicts as many as 60 percent of untreated patients, sometimes causes permanent structural damage to the joints. Pregnant women who suspect they may have the disease must seek prompt treatment. The Lyme spirochete is known to cross the placenta, and some cases of fetal damage have been reported, including miscarriage and stillbirths.
Patients with advanced Lyme frequently take antibiotics intravenously or intramuscularly. Resistant cases sometimes respond to a new antibiotic called ceftriaxone (the brand name is Rocephin), whose advantage is that it penetrates the blood-brain barrier and goes after the spirochetes that may be lurking in the central nervous system. Former U.S. representative Berkley Bedell of Iowa, who thinks he got Lyme on a fishing trip in Virginia four years ago, still takes Rocephin, which costs $2,000 or more for a twoweek series of injections. "I felt I had to leave Congress because I didn't have the energy anymore," says Bedell, 68, who quit the House in 1986 after six terms.
Some patients notice that their symptoms initially get worse when they start antibiotic treatment. The theory, explains Stonybrook's Dr. David Volkman, is that the immune system is somehow stimulated as the drugs and spirochetes battle it out. and the result is comparable to a fever that indicates the body is fighting an infection. Researchers don't fully understand whether having a bout of Lyme protects victims against getting it again; many patients who seemed to have caught the disease more than once might just be experiencing a reactivation of the original case.
Vet bills: Lyme is a serious problem for animals as well as humans. Ralph Janzer. a dairy farmer near Campbellsport, Wis., has seen most of his 60 milking cows attacked by the disease, which veterinarians believe can spread among cattle through exposure to infected urine. The disease has struck the cows' joints, making it difficult for them to walk. They've also lost their appetite and, at least temporarily, their ability to breed. Domestic pets also get Lyme; in fact, dogs are six times more likely to get it than their owners are. Cats play host to the Lyme ticks, but are infected less often, possibly because they groom themselves so regularly. Animals are usually brought to the vet with advanced Lyme that has caused arthritis or lameness. Scott Parry, 27, of Norwalk, Conn., has a 3-year-old golden retriever with Lyme. The dog caught it last August, and although Parry has spent $150 each month since then on medication and vet bills, Toby has not fully recovered. "He still gets stiff," says Parry. "Sometimes he can hardly walk, as if he's old before his time."
Researchers at the University of Minnesota and elsewhere are working on a vaccine to prevent Lyme. Johnson's team has developed one experimentally that protects hamsters, and expects another, for dogs, cats and cattle, to be ready in a year and a half. A human vaccine is trickier and will take longer.
Other efforts to reduce the spread of Lyme are based on the life cycle of Ixodes dammini. The tick, which hatches in the spring, eats three blood meals during its two-year life. The first host, during the tick's larval stage, is most commonly an infected white-footed mouse. In the second, or nymph, stage, the tick tends to feed on medium-size mammals, including dogs, possums, raccoons and people. In the Northeast and Midwest, adult ticks typically feed and mate on the white-tailed deer. (One explanation for the rise of Lyme is that the deer population has rapidly expanded, and human proximity to the animals has increased as suburban development has encroached on woodland.)
Environmental strategies to reduce the tick population have so far proved unworkable. Broad-scale spraying is ineffective and has undesirable side effects. A product called Damminix, developed by medical entomologist Andrew Spielman and others at the Harvard School of Public Health, is designed to get at the ticks via their murine hosts. It consists of biodegradable eight-inch tubes filled with insecticide-soaked cotton. When tubes are placed outside, the mice take the cotton to line their burrows, and the ticks die (the mice are unharmed). Damminix is practical only for small areas, and won't work if neighbors don't use it too. It's also expensive: about $200 an acre for one year's protection.
'Bambi syndreme': Attempts to reduce the deer population in Big Pine Key, Fla.; Fire Island, N.Y.; Mason's Island, Conn., and Ipswich, Mass. (where one neighborhood near a nature preserve has a Lyme-infection rate of 35 percent), have run smack into the "Bambi syndrome." This phrase is used to describe ardent animal lovers who oppose any slaughter of deer. In fact, eliminating deer doesn't seem to help unless the decimation is total. When scientists reduced the deer population by 50 percent on Great Island, Mass., where Lyme was prevalent, the infection rate failed to drop. Only when islanders killed virtually all the remaining deer did the tick population shrink significantly. Heather Wallace, an Ipswich teenager who has had Lyme twice (her mother found ticks in the girl's navel and ear) and still suffers from mild arthritis, is not part of the Bambi faction. When three deer appeared outside the window recently at breakfast time, Heather felt her stomach turn. "All I could think about was ticks," she says.
Lyme experts agree that the best available weapon against the disease is public education. Health officials everywhere are putting out the word. Connecticut has named May Lyme Disease Awareness Month. In Wisconsin, the department of health plans to mail out 150,000 brochures this summer. They'll go mostly to physicians because of Lyme's diagnostic difficulties. Since outdoor play puts children at special risk for Lyme, other mailings will be sent to summer camps, where plans are already underway to take on the tick menace. Sue and Robert Lebby, who run Camp North Star for boys and Birch Trails Camp for girls in the state's far northwestern wilderness, say that Lyme-tick education will be a major part of this summer's orientation program. Tick specimens will be shown to each counselor, and campers will be taught how to dress protectively and check themselves. JoAnn Mann, 68, a national volunteer for Girl Scouts of America and the Audubon Society who lives near Milwaukee, says that on the one hand, "I'm shocked by the number of people and parents who don't realize Lyme's impact." On the other hand, she adds, "I don't want them to make their children porch potatoes this summer, either."
Paul Etkind of the Massachusetts Department of Public Health says Lyme disease is second only to AIDS in pulic interest and concern. I lectures widely on Lyme and sends out press releases and letters to local board health, parks and camps, describing how to recognize the tick and the disease. Etkil also sends out a basic fact sheet to the many parent of children in Massachuset boarding schools who write wanting to know if their family doctor should be notified that their children are in tick territory. At Lebanon State Forest in New Jersey, numerous signs warn hikers of safe. measures they should take against close encounters of the tick kind. Still, says Michael Meddis, assistant health coordinator for Monmouth County because New Jersey's rural areas are so close to its cities, many urban dwellers are caught off guard. "They're not even aware what a tick looks like."
Shared angst: Some physicians are skeptical about Lyme anxiety and claim the disease is actually being overdiagnosed in certain cases. But try telling that to the hundreds of patients who gather monthly at support groups around the country to share their angst over Lyme.
"The No. 1 topic is the coping process, how to handle all that fatigue and the feelings of anger that come with it," says Karen Meyer, a nurse with the arthritis-treatment division of St. Elizabeth Hospital in Appleton, Wis., and coordintor of a support group there. "The frutration is like no other disease. With Lyme, you get a treatment, but the symtoms seem to go on and on, sometime for years."
By any measure, Lyme is a serious and spreading public-health problem, bewildering to both patients and doctors. "It's disease that really tests the skills of the physician," says Stonybrook's Dattwyle. "You can't be casual about this." But no that Ixodes dammini has crawled out of the woods and right onto the front lawn, the battle lines are drawn. "We're fighting full-scale war against Lyme up here," says California's Katzel. As outdoor-loving Americans roll down their sleeves and put up their socks this summer, spray cans at the ready, they are well prepared to outwit the tiny enemy.
To remove ticks, use tweezers - not matches or nail polish, which may leave part of the tick behind. But first, try protecting yourself from ever having to reach for them.
Dogs and Cats
If you let your dogs or cats outside, fit them with tick collars and inspect them often for attached ticks that could make them sick. You are at risk from ticks that hitch rides on your pets but fall off before biting them. Don't let animals on furniture, and don't sleep with them.
Children
Unless you keep children indoors, you may not be able to keep them tick-free. But you can teach them to avoid tall grass and low brush, check each other for "moving freckles" and remove ticks only with tweezers. Examine kids closely after they've been in infested areas.
Clothing
Make life difficult for hungry ticks by tucking trousers into long socks and a long-sleeved shirt into your pants. Wear white or light colors and tightly woven fabrics. Check often for ticks making the long climb from your lower legs to open skin.
Repellents
If you can't bear to wear all those clothes in summer, at least spray insect repellent containing the ingredient DEET on your skin. If you do cover up, also spray permethrin (sold as Permanone) on your clothes, particularly on pants legs and socks.
When Beckie Murdock's doctor concluded after Christmas that she, her husband and three children had Lyme disease, she felt a certain solace. "We could finally say, 'This is what's wrong with us'," Murdock recalls. "It was no longer a guessing game." That confusion had plagued the Black Creek, Wis., family for more than a year as a bizarre array of symptoms moved in and out of their lives like a medical poltergeist. Besides the recurring flu, headaches, sore throats, fatigue and migrating joint aches, the family suffered through a twilight zone of lax concentration and irregular sleep. When Beckie tripped over her small son TJ, one morning last spring as he tried to catch 40 winks on the hallway floor, she decided enough was enough.
Though Beckie and her husband, Todd, both 34, had heard enough about Lyme disease to suspect it, they couldn't remember being bitten by ticks. Not that they hadn't given the ticks a chance. The Murdocks spend numerous weekends fishing and hunting throughout Wisconsin's woodlands. They did remember a strange rash in the summer of 1987 on their daughter Mitzie's arm that they later realized to be the forerunner of the strange series of symptoms that would come and go at random with each family member. Their doctor suspected a severe viral problem, but Beckie wasn't convinced. "These were too many viruses to be just a coincidence," she says. "I know intuitively when there's something wrong with my kids- but this time I didn't have a way to help them."
As fevers and conjunctivitis struck the children last spring, Beckie started reading stacks of medical journals. By summer she was sure the family was suffering from Lyme disease. Their doctor, eager to learn about the illness, sent the family to a rheumatologist. After several negative blood screens for the Lyme antibody, Todd finally tested positive in the fall, and in December they knew it was Lyme.
Sporadic recovery: As a weary Todd took a leave of absence from his job as a steam fitter, the whole family began a monthlong intravenous treatment with a potent antibiotic, ceftriaxone at $1,000 per person each week. Gradual but sporadic recovery resulted, and the family has joined a Lyme support group in nearby Appleton. They also praise their family physician, Dr. Michael Faudree, for not dismissing them as hypochondriacs. "You have to be patient with the doctor," says Todd. "With this, they can't give you a blood test and say, 'Yes, you're pregnant'."
Both Beckie and Todd returned to intravenous treatment this month, part of the "slow, roller-coaster process" of breaking Lyme's grip. But the Murdocks are not about to forsake the outdoor life they love. The family headed to Wisconsin's hinterlands last weekend to fish. Says Todd: "You'd be crazy to run and hide."
RETURN TO THE KCC MICROBIOLOGY HOME PAGE