Mystery of Lyme disease puzzles patients, doctors
By JENNETTE BARNES, Standard-Times staff writer
MIKE VALERI/The Standard-Times
Tom Lopes, an illustrator and carpenter who lives in Fairhaven, says he doesn't remember being bitten by the tick that infected him with Lyme disease, but that it probably happened here in his back yard. Living in SouthCoast means living with a high risk of insect-borne disease. Encephalitis from a simple mosquito bite killed two Massachusetts residents last year, and tick-borne Lyme disease infects some 1,500 Bay Staters annually, often with devastating long-term symptoms. In the first of a two-part series, we take an in-depth look at Lyme disease. Tomorrow, we report on West Nile virus and eastern equine encephalitis.
Lyme disease is nothing if not poorly understood.
Tom Lopes, an illustrator and carpenter who lives in Fairhaven, noticed a "sore" on his body last spring. He didn't know the sore was the circular rash associated with Lyme disease. Nor did he remember being bitten by a tick. Deer ticks, also called black-legged ticks, transmit the bacteria that causes Lyme disease.
A few weeks later, he suddenly fell ill, this time with another classic sign of advancing Lyme -- flu-like symptoms in summer. Before long, he was in the emergency room, delirious with fever, singing "On the Good Ship Lollipop" to the nurses. If the disease wasn't treated early, Mr. Lopes could have suffered years of joint pain, fatigue, memory loss or heart palpitations.
"I didn't realize it was as dangerous as it was," he said.
Mr. Lopes spent two weeks on intravenous antibiotics, and now considers himself cured, at least as far as anyone can tell. Tests for Lyme can be inconclusive. And it can be tricky to diagnose. More than 100 possible symptoms are mentioned in literature distributed by the Visiting Nurse Association of Southeastern Massachusetts, earning Lyme disease a reputation as a mysterious imitator of other conditions. Some physicians are reluctant to diagnose Lyme disease without a positive test, especially if the patient never developed the classic "bulls-eye" rash. But many confirmed cases never develop a rash.
As treatment is delayed, the bacteria replicate in the body, making older infections difficult to treat. Physicians vary widely in how aggressively they treat the disease and how they respond to patients who exhibit symptoms without a positive test result. Some embrace alternative therapies; others do not.
"The field has become way polarized," said Dr. Sam T. Donta, an infectious disease specialist in Falmouth and Boston. Each week, Dr. Donta sees about 10 new patients with chronic Lyme disease. Some have tested negative for Lyme and carry other diagnoses, such as chronic fatigue syndrome or fibromyalgia.
He believes what patients really need is the right kind of antibiotic therapy, often in repeated cycles. In his opinion, a popular antibiotic for Lyme, doxycycline, does not work as well as tetracycline. The best time to get antibiotics is right away, before Lyme could appear on a test. But in some chronic cases, medication never fully clears up the symptoms. Alternative therapies are popular among patients desperate for relief, like
Dianne Nassr of Freetown, who lived with chronic Lyme for two years. She noticed an odd red mark on the inside of her wrist in June of 2001, but she didn't know what it was. Not until she developed knee pain did Ms. Nassr begin a four-month course of antibiotic. It didn't seem to work, so she tried acupuncture and energy healing. But fatigue, insomnia and forgetfulness plagued her, so she went back to antibiotics -- this time, a three-drug cocktail for nine months.
"I had become Lyme disease," she said. "That was my identity."
Ms. Nassr believes a spiritual experience cured her, and it inspired her to open a holistic healing practice in Fall River.
Spread by ticks
To feed, ticks sink their mouths into the skin and hold on for several days to take a blood meal. Removing them before they feed, generally within 24-36 hours, can avert disease. That's why checking clothing and skin for ticks is so important, said Dr. Bela Matyas, medical director of the Massachusetts Department of Public Health epidemiology program.
"You're usually able to remove them before they have a chance to transmit the infection," he said.
Ticks should be removed with tweezers by gripping the tick as close to skin as possible and pulling gently.
The Department of Public Health recommends antibiotic treatment for anyone who lives in a high-Lyme area and gets a deer tick bite that lasts long enough for the tick to become engorged with blood. Engorged ticks swell in size.
Patients in high-Lyme areas may be given a single dose of antibiotic to treat tick exposure, Dr. Matyas said. Once symptoms appear, DPH recommends 14-21 days of antibiotics. But views on treatment vary.
"The one thing with Lyme disease is almost everything about it is controversial," Dr. Matyas said.
Some advocates, like American Lyme Disease Foundation executive director David Weld, recommend seeing a doctor after any tick bite.
Most human infections occur in the spring, when year-old nymphs become active after spending the winter dormant.
This year, the season has been cool in Massachusetts, so nymphs -- a key link in the chain of infection -- are emerging now, roughly two weeks later than normal, Mr. Weld said.
Even though fewer nymphs than adult ticks are infected with the Lyme bacteria, nymphs cause more infections because their small size makes them difficult to detect before they bite.
Adults can be active all year round, although they become less active when temperatures drop below 40 degrees.
State data on the prevalence of Lyme disease are constantly changing, because physicians often wait until the end of the year, or even later, to report cases, Dr. Matyas said. The state has recorded 1,789 cases for 2002, just over 1,500 for 2003, and 1,479 for 2004, but he said those numbers don't mean Lyme is declining.
Dr. Matyas said he expects the 2004 number to eventually get close to 1,800.Other the other hand, the risk of Lyme isn't necessarily rising, he said, except in areas where deer are newly arriving in residential neighborhoods. Deer do not carry the bacteria, but transport ticks from place to place. Most ticks that feed on deer are adult females, which can lay up to 3,000 eggs, according to federal scientists.
The highest rates of Lyme disease in Massachusetts in 2003 occurred on the Cape and Islands and in Berkshire County, followed by Plymouth County, which had 150 cases. Bristol County had 99 cases.
While Lyme is the most common tick-borne illness, it is far from the only one. American dog ticks, which are widespread in the Northeast, and Lone Star ticks, which are starting to appear in Massachusetts from their stronghold in the South, can carry Rocky Mountain spotted fever. Ticks can also carry babesiosis, ehrlichiosis, and tularemia.
A handful of new prevention techniques have appeared within the past few years.
The U.S. Centers for Disease Control and Prevention now recommend treating clothing and shoes with permethrin, an agricultural insecticide. It kills and repels both ticks and mosquitoes.
Some clothing companies have begun selling products pre-treated with permethrin. Buzz Off Insect Shield LLC, based in North Carolina, markets treated clothing through Orvis, L.L. Bean and Bass.
Like other pesticides, though, permethrin carries an element of health risk that is hotly debated. Literature from the Massachusetts Department of Public Health reports that permethrin binds tightly to fabrics, so very little gets on the skin once the fabric is dry.
Last year, scientists at Barnstable County Cooperative Extension started testing a device that treats deer with permethrin.
Deer eat from a bait station called a 4-Poster filled with corn. To reach the corn, they must rub their head, ears, and neck, where most ticks feed, against rollers laced with the pesticide.
Roughly 50 bait stations have been placed on Cape Cod and Martha's Vineyard. Ticks counts remain unchanged so far, partly because ticks have a two-year life cycle and often feed on smaller mammals in the first year.
"Maybe in three years we might see something," said David Simser, a biologist at Barnstable County Cooperative Extension.
A similar product that treats mice, a key carrier of Lyme disease, is available to the public through licensed pesticide applicators. Called the Maxforce Tick Management System, it uses the insecticide fipronil. Homeowners can also reduce the number of ticks in their yards by removing leaf litter, brush and wood piles where ticks thrive, and by making their property less hospitable to deer and rodents.
Dr. Matyas recommends walking in the middle of trails to avoid long grass. And don't forget the tick check.
This story appeared on Page A1 of The Standard-Times on May 22, 2005.
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