More Awareness, More Cases

Originally published by the New York Times, June 2, 2006

By Tine Kelley

Reported cases of Lyme disease in the metropolitan region rose sharply in 2005, according to health officials, with increases of 34 percent in Connecticut, 23 percent in New Jersey and 9 percent in New York State.

But some counties showed declines. Westchester had 458 reported cases, a decrease of 39 percent from 2004. On Long Island, Suffolk County, with 542 cases, declined 3 percent, while Nassau County, with 122 cases, had an increase of 107 percent.

Fluctuations in case numbers are common, officials said, and the causes are difficult to pinpoint. Connecticut's increase last year, to 1,810 cases, is “right within what we've been seeing historically for the past 15 years,” said Randall Nelson of the infectious disease division of the State Department of Public Health. “There's variation from year to year.”

Contributing factors are food supplies for deer and rodents, which carry the ticks that spread the disease; weather (ticks have a two-year life span and flourish during warm, wet winters); and human activity, including prevention efforts and disease reporting.

Mid-May to early July is peak season, when about 90 percent of cases are transmitted, officials said. The disease often causes a bull's-eye-shaped rash near a tick bite. It can spread through the body if left untreated, causing arthritis, cardiac irregularities and neurological problems.

Reported cases have been increasing over the last decade, experts say, partly because of greater awareness of the disease.

“There's either a real increase or an increase in recognition, and it's probably a combination of both,” said Dr. Steven E. Phillips, the immediate past president of the International Lyme and Associated Diseases Society. The disease was first identified in the 1970's in Lyme, Conn., thus giving it its name.

Another expert, Eddy Bresnitz, the state epidemiologist in New Jersey, where 3,372 cases were reported in 2005, cited the increased proximity of humans to wildlife. “There's more and more suburbia constructed closer to parks and areas where there's increased vegetation,” he said. “We have more deer and more deer ticks.”

Anyone who walks through leaf litter in the woods or on the edge of fields or lawns this time of year should check regularly for the nymphal stage of the tick, said Durland Fish, a professor of epidemiology at the Yale School of Medicine. The size of a poppy seed, the tick spreads 95 percent of cases, Dr. Fish said.

Some prevention efforts appear to be working. In Hunterdon County in New Jersey, the rate of reported cases fell almost by half, to 268 per 100,000 residents in 2005 from 554 in 1996. For comparison, the rate of Lyme disease nationally in 2005 was 6.7 cases per 100,000 people, and it is 27.4 in the 12 Eastern and Midwestern states where it is most common, according to the Centers for Disease Control and Prevention.

Hunterdon experienced an increase in the number of cases in the 1990's after the completion of a section of Interstate 78 in western New Jersey in 1968 led to housing construction and more people moving into deer habitat, said John W. Beckley, director of the County Health Department.

He said some of the recent decline in Lyme disease in the county might be attributable to public health efforts that included putting signs in county parks warning visitors to check for ticks; distributing fliers about the disease to doctors' and veterinarians' offices, garden centers and schools; and publishing a Lyme-O-Meter in a local newspaper announcing the level of tick danger each week.

Dr. Andrea Gaito, a rheumatologist in Basking Ridge, N.J., in neighboring Somerset County, said in mid-May that she was already seeing three to four new cases of Lyme a week.

“There's more awareness, that's what brings people in early, and that's the good news,” she said. “It makes early diagnosis and treatment so much better.” As a result, she said, she is seeing fewer cases of chronic Lyme disease, which she estimates account for 15 to 20 percent of cases.

Kim Uffleman, 49, of Rivervale, N.J., in Bergen County, suffers from the chronic form of the disease, which she contracted 17 years ago. Nine months after being bitten by a tick, she was bedridden, and it was two years before Ms. Uffleman, who used to run almost 50 miles a week, could leave her house without help. It took her too long, she said, to find a doctor who could give her a clear diagnosis, even though she had had the classic bull's-eye rash.

“I grieve the loss of my health, and that I had to raise three children while being extremely ill,” she said. “They know nothing except for a sick mother, and that's very difficult.”

She still has headaches, back pain, fatigue, numbness in her hands and burning pain down her arms.

Pat Smith, president of the Lyme Disease Association, a national nonprofit group based in Jackson, N.J., said her group had helped develop two bills now before Congress that would provide $100 million for research, education and prevention, in part to develop a definitive diagnostic test.

People who receive an early diagnosis and treatment with antibiotics generally recover and do not develop chronic symptoms. But diagnostic tests have only been about 50 percent accurate, Ms. Smith said, adding that she has seen an increase in chronic cases since the disease was identified, because as the number of cases grows, the number of undiagnosed, misdiagnosed and slowly treated cases has also grown.

“Some people have to go to dozens of physicians before they get diagnosed, and people are getting delayed or inappropriate treatments,” she said.

Linda Davis, 42, of Freehold, N.J., in Monmouth County, had misdiagnoses of multiple sclerosis and fibromyalgia, among other ailments, before learning she had Lyme disease in 2003. She was using a wheelchair when she finally started receiving proper treatment.

Her sons, Austin Hutcherson, 8, and Myles Hutcherson, 6, also have the disease.

“None of us had the bull's-eye rash,” she said. After receiving antibiotics, they are all doing better, though they still have symptoms; Austin has gastrointestinal problems, and Myles has chronic fatigue.

“We try to keep everything normal,” she said. “They're always playing outside. Most people don't even know they have Lyme disease.”

Ms. Smith said the Lyme Disease Association was also raising money for an endowed research center at Columbia University devoted to chronic Lyme disease and supported research into the genome of Borrelia burgdorferi, the bacteria that causes Lyme disease.

Researchers at the University of Medicine and Dentistry of New Jersey in Newark are determining the genetic structure of 17 strains of the bacteria, with help from researchers at the Institute for Genomic Research in Rockville, Md., Stony Brook University and the University of Utah.

One New Jersey researcher, Dr. Steven Schutzer, said, “Knowing the genetic sequence will help in diagnostics, and possibly different kinds of therapeutics.”

Despite concerns about the disease, Mr. Beckley, the Hunterdon County health officer, urged people to enjoy the outdoors.

“You can go on as many hikes as you want through the woods, but stay on the path,” he said. If you must go off the path, “you should tuck your pants in your socks,” he said, and use insecticides or insect repellent and check for ticks on yourself, your children and pets after being outside.