Foreboding at Ground Zero of Lyme Disease

No pet sets a paw inside Paulette Zander’s place. No warm weather arrives until the lawn has been sprayed with insecticide. A walk in the woods? A picnic in the park? No way. Zander has drawn a line in the sod, and she’s determined to keep the enemy at bay.

Zander doesn’t just live near a town called Lyme. She lives in the heart of Lyme country, a pleasantly wooded yet perilously tick-infested place that now encompasses at least 45 states. Some parts of Lyme country are fairly recent additions. Los Angeles County, which has recorded 28 cases of Lyme disease since 1989 (just four that were clearly of local origin), found its first Lyme disease-carrying tick just last February.

Newcomers to Lyme country can look at places such as Lyme--the affluent hamlet where the disease was identified 23 years ago--to see how a bug no bigger than a poppy seed can get under people’s skin, often without so much as sinking a scalpel-like mandible into them.

Take yardwork, for instance.

“I always wear long slacks with white socks pulled up over them, and long sleeves,” said Zander, 47, who runs a bookshop called The Happy Carrot, her nickname. “In a way, it is like a routine. Every night when I come in, before I take a shower, I really check myself. Around the ears, the back. Ten years ago, it never would have occurred to me to do that.”

Unseasonably early warm and wet weather wrought by El Nino is expected to create a bull market for deer ticks this summer, the sort of news that triggers a collective cringe in towns like this one, where even the most taciturn Yankee admits to doing the striptease known as the daily tick check. Some people are so wary of the deer tick’s affinity for brush that they keep their lawns as trim as putting greens.

From Chills to Brain Fog

In its early stages, Lyme disease can cause chills, fever, painfully swollen joints and a distinctive circular rash, and generally can be cured with antibiotics. If left untreated, the disease can cause arthritis, facial paralysis, heart problems and neurological disorders. Chronic sufferers, people who say their symptoms have resisted cure, complain of maladies ranging from severe fatigue, dizziness, memory loss and a sort of brain fog that makes concentration difficult.

Public demand for a defense against Lyme disease, which is caused by a type of corkscrew-shaped bacterium, is one of the reasons why a U.S. Food and Drug Administration advisory panel on Tuesday reluctantly recommended approval of a new vaccine, even though the group had concerns about the drug’s effectiveness and safety. It told the manufacturer, SmithKline Beecham, that it needed to continue clinical testing.

Although rarely fatal, Lyme disease has vocal and fairly influential pressure groups because so many of its victims are professionals who live in upscale suburban developments. Last year, senators from Connecticut, which has the nation’s highest incidence of Lyme disease, and five other heavy Lyme states wrote a letter to the FDA urging officials to speed the way to market for SmithKline’s vaccine and another upcoming drug.

The fact that the panel grudgingly recommended a flawed drug reflects some of the ambivalence about Lyme disease and its menacing carrier, the seemingly armor-plated arachnid that has become the scourge of sprawling suburbia. Some doctors contend that more people think they have the disease than really do and that a cottage industry of clinics run by Doctor Feelgoods has cropped up to capitalize on Lyme anxiety by over-medicating thousands of people with antibiotics. They argue that Lyme disease has become a catch-all diagnosis for people suffering from other things.

Other doctors and patient advocacy groups that pump out newsletters devoted to Lyme disease insist that the conservative medical establishment still doesn’t recognize just how chronically debilitating, resistant to treatment, symptomatically cryptic and elusive to detection Lyme disease can be and put too much faith in imperfect diagnoses.

Agreement on Need for More Research

Nearly all agree that more research needs to be done.

“We really don’t have the full story on this,” said Terrence Doherty, a local doctor.

Doherty recently tested a new vaccine manufactured by Pasteur Merieux Connaught, which will compete with SmithKline’s drug, on more than 500 local residents. He said he had no shortage of volunteers, himself included.

“It really didn’t take a big effort to recruit people into this,” he said. “There is a definite fear of Lyme.”

Lyme disease has become so dug into the psyches of communities throughout the Northeast and upper Midwest, in fact, that few people raise an eyebrow over such occurrences as these:

* The New Jersey Appeals Court in March ordered a country club to pay workers’ compensation to a former groundskeeper who said he contracted Lyme disease from his job, a decision legal experts viewed as significant.

* Boy Scouts in New Hampshire abandoned a camp they had used for three decades because so many Scouts came home with ticks that nervous parents forbade them to return.

* A member of a West Virginia militia group, who also was a member of the high-IQ group Mensa, was sentenced to two years in prison in November for building and then detonating a fertilizer bomb. During sentencing, he pleaded for mercy, citing his bout with Lyme disease.

* Last spring, students at Yale staged a 1960s-style demonstration to protest current medical wisdom that Lyme disease patients need no more than four weeks of antibiotics to effect a cure.

* Floridians are blaming a surge in deer ticks on Hurricane Andrew in 1992, the aftermath of which led to a rebuilding boom and a resulting rise in the use of decorative landscaping mulch, much of which is filled with ticks that lived in the trees before they were mulched.

* Townsfolk on Maine’s Monhegan Island voted, 31 to 23, this spring to spend $8,000 to hire a “professional deerslayer” to wipe out the local herd in a final, scorched-earth effort to eradicate Lyme disease. Massachusetts’ Nantucket Island doubled the length of the deer-hunting season and lifted the bag limit. Dozens of other places have launched similar assaults on their deer, a prime carrier of ticks.

A generation ago, before suburbia spilled into the forest, people in Lyme used to run to their windows and gaze at the pretty deer that would cross the front yard with the frequency of a lunar eclipse. No more. “I saw eight deer in my pasture last week,” said Diane Gregory, 53, a real estate agent in the neighboring town of Old Lyme. “That really upset me.”

Occasionally, Gregory will take relocating out-of-towners to look at houses in Lyme, which is among the most densely wooded residential areas around. ‘They’ll want no part of it,” she said.

What frightens people about the tick is that it’s so small, particularly in its nymph stage. Even though it has to be on a victim for 24 hours to transmit Lyme, one of several diseases it can carry, its feeding apparatus is so surgically adept that it’s hard to detect unless you’re looking for it.

“Literally, it’s this big,” said Gregory, pointing to a period on a purchase agreement.

Some Bitten Never Smitten

Yet Lyme disease has been such a part of Lyme that some people just shrug. First Selectman Tim Griswold said he’s been bitten by deer ticks frequently but never contracted the disease. “People around here are acclimated. It’s been with us a good many years. Most families have somebody who has had the disease.”

Still, he does the daily tick check. And he said he would take the vaccine when it hits the market. His daughter had Lyme disease last year, but it was knocked out early.

When residents go out of town and tell people where they’re from, though, they invariably ask: “Like the disease?”

Few people understand how deeply Lyme disease has entered the New England psyche better than Elwyn Harp, who manufacturers a precision pair of spring-tempered steel tweezers called Uncle Bill’s Sliver Gripper in West Hartford. Five years ago, an entomologist told him how effective the tweezers were in extracting the deer tick, which is also known as black-legged tick.

Harp packaged his tweezers with a little plastic magnifying glass, a couple of alcohol wipes, two resealable plastic “tick specimen” bags and a tick identification card. He called it the Tick Removal Kit and sells it for about $4 wholesale.

“The kit is probably 20% of my business now,” said Harp, who added that he has probably sold 50,000 of them to Boy Scout troops, YMCA camps, day-care centers and public utilities, which pass them out to field crews.

It’s hard to find somebody in Lyme who hasn’t had Lyme disease, though nationwide the official numbers seem small. According to the Centers for Disease Control and Prevention, there were 16,461 cases of Lyme disease reported to the agency in 1996, though critics say the number is greatly underreported.

The CDC says the numbers are running lower in 1997, but it is unclear whether that signifies a trend downward, greater precautions or a cyclical down year for ticks.

Far greater than the victims are those who fear they might become one. A Yale University study this year said that fear of Lyme disease makes many people depressed and prompts them to rush to the doctor to demand unnecessary treatment.

“We get people who want the antibiotics before the diagnosis,” said Cheryl Lozanov, a receptionist at the Old Lyme Family Practice.

Connecticut is blanketed with billboards advertising 1-800-TICKBITE, through which people who fear they have Lyme disease usually can get intravenous doses of antibiotics, said Doherty. Doctors say such easy access to the drugs contributes to the emergence of drug-resistant forms of bacteria.

The Yale study looked at 209 patients and found that 60% who did not have Lyme disease still averaged four blood tests and 42 days of antibiotic treatment during the period that they suspected having the disease. A University of Maryland study found that of 142 people who reported tick bites but showed no Lyme symptoms, more than half got antibiotics.

Yet critics of current clinical standards for Lyme disease argue that many doctors are so wedded to standardized treatments and imperfect diagnostic methods that the worst patients don’t get enough drugs. They argue that it is better to be safe than sorry.

Chronic Sufferer Criticizes Doctors

Bett Marshall says she has suffered from chronic Lyme disease for 20 years and estimates she has seen roughly as many doctors, discarding those she believes failed to recognize her fatigue and recurring neurological problems as symptoms of the disease.

Among her symptoms, she said, were an inflamed sac around her heart, muscle aches, dizziness, memory loss and confusion. “I would drive out of my house and not be sure which side of the road to drive on,” said Marshall, 50.

When doctors finally discovered that she had Lyme disease, they gave her a standard three-week dose of antibiotics. But Marshall said symptoms kept returning. She kept changing doctors until finding one who gave her six weeks of intravenous antibiotics that she said has helped alleviate the symptoms.

Shopping for doctors is a routine practice in Lyme and other places where the disease is endemic, and some warn that some patients may find solace in believing that Lyme disease is the cause of their ailment, when really it isn’t.

“There are always patients who present vague symptoms that could fit a lot of different things. We used to call it chronic fatigue syndrome. I think chronic Lyme has become like that,” said Doherty.

Yet few diseases have such a history of being misdiagnosed. Paulette Zander wasn’t always a stickler for minimizing her contact with the ticks, until she developed the early symptoms of the disease in 1986.

“I called my doctor and said I thought I had it, but she said ‘No, you don’t,’ ” she said. “I insisted, and it turned out that I did.”

Before that, she didn’t think twice about heading into the woods, letting her cat come inside or not tucking her pants under her socks. “I just never took it seriously.”