Island residents discuss living with Lyme and other tick-borne diseases
Lyme disease in other communities
Sponsored by the Jamestown Tick Task Force
Wednesday, Feb. 12, at 6 p.m. at the library
Learn how other New England communities have dealt with problem
Local gardener Roger Marshall had an exhausting holiday season.
While it’s true most everyone has their tanks drained following more than a month of gluttonous eating, drinking and shopping, it wasn’t the tryptophan that sidelined Marshall.
The author started nodding off at his desk. He would wake up feeling achy. He slept most of the time, and when he wasn’t in bed, he didn’t want to do anything.
Marshall’s M.O. has never been to sit still. He’s a sailor, with active grown children who sail, and when he’s not building a greenhouse, he’s planting and harvesting crops from inside of it.
But it all came to a crashing halt when he caught Lyme disease for the third time. The first couple of times Marshall was exposed to the disease, he doesn’t remember it being nearly as crippling.
“It’s really debilitating,” he said. “I was sleeping most of the time. I would sit down at my desk, start writing, and the next thing I know I’d wake up with my head on the keyboard and 10 pages of X’s.”
For the first two bouts, Marshall noticed the culprits. When he saw a deer tick attached to his body, he immediately took the 2-mile drive from his home at Fort Wetherill to Dr. Joe England on Southwest Avenue.
The third time, which Marshall predicts he picked up in November or December, he didn’t see the enemy. He only felt the symptoms.
“I’m also suffering from being old,” Marshall said. “I never experienced the effects this bad.”
It took Marshall longer to visit the doctor this time because he never saw a tick on his body, there was no bull’s-eye rash, and it was cold outside. Adult ticks, contrary to popular belief, remain active all winter long.
Marshall didn’t speak at the symposium on Jan. 22. The forum, organized by David Fuquea, was the third event sponsored by the Tick Task Force. The goal of the six symposia is to educate the public about the link between Jamestown, deer and tick-borne disease. Residents were invited to share their experiences in the most recent forum, and a handful told their stories.
Tammy Fasano lives on Standish Road with her husband. She is the mother of two college-aged children, and the Fasanos, according to Tammy, are a “very active family.”
“My daughter has spent the last seven summers in the woods in the Maine, yet I’m the only one who has had Lyme disease in my family. And I’ve had it twice.”
Fasano had just given birth to her second child in 1994 when she became incredibly weak. Pain and fatigue spread throughout her body, and she just figured it was a side effect from the delivery.
“I walked around in a paralyzed state with two babies to take care of,” Fasano said.
For two months, she did nothing. Then one morning she woke up with Bell’s palsy. She immediately went to the doctor.
“Lyme?” she asked herself after hearing the news. “I never had a rash. I never saw a tick.”
Lyme disease then was relatively new and unknown, and since she was most likely infected when she was pregnant, Fasano asked the doctor if it could be passed in utero.
The answer was scary because there wasn’t one. The doctor had no idea.
Fasano went on antibiotics for a while and began feeling better, so she stopped. The problem? She was still fighting her first bout with Lyme.
She developed lockjaw soon after, and when she went back to the doctor’s, Fasano had to persuade the medical experts it was the same disease. She went back on antibiotics and got better.
Her second nightmare began in 2010. After returning to the country from traveling abroad, Fasano made her routine visit to Dr. England. The doctor noticed something.
“Tammy, look,” England said. “It’s the bull’s-eye.”
“Terror went through my body,” Fasano said. “I just started crying.”
For the second time, the antibiotics responded. She considers herself lucky.
“I feel very exposed living here,” she said. “I don’t feel like I have the power to get these ticks off me. Or to see them.”
Steve Farrelly lives on Beach Avenue in the Jamestown Shores. He is the father of five and has lived on the island for 25 years. His backyard is a stomping ground for deer ticks. There is a stone wall for mice to live in, and apple trees for deer to snack on.
Twelve years ago he was with his youngest son, then 3, at a school function at Meadowbrook Waldorf School in West Kingston. He son, almost instantly, developed a speech impediment.
“I notice he was speaking like Popeye,” Farrelly said. “His jaw was a little bit droopy.”
As the day went on, his son’s speech grew worse. Almost immediately after seeing a doctor, the toddler was diagnosed with Lyme. His son improved following treatment.
Like Fasano and Marshall, however, the nightmare didn’t end. Just last summer, his oldest child, a junior at the University of Rhode Island, came home from school tired and weak. She stayed with her parents because she’s couldn’t concentrate at school. That’s when they noticed bruising on her back. Farrelly’s oldest daughter, like his youngest son, has been infected.
“We love living in Jamestown. We’ve been here a long time. But I &feel this area is a hotbed,” Farrelly said.
While Lyme is the most eminent of tick-borne illnesses, it’s certainly not the only one. The Hirsch family of five is proof of that – they all suffer from cat scratch fever.
Bennett and Dori Hirsch live on Hawthorne Road and have three daughters. When Dori started to feel fatigued, she chalked it up to old age.
“It coincided with menopause,” she said. “I thought, ‘Boy, it’s really hitting me with a vengeance.’”
But it became more than sore joints and exhaustion. Dori’s hair began falling out, but she wasn’t thinning on top. Her hair was coming out in clumps.
“That’s when I decided to go to the doctor,” she said.
Dori was diagnosed with cat scratch fever, a disease caused by the bacteria bartonella. While the sickness is most commonly linked to a cat scratch or bite, ticks can act as vectors and transmit the disease to humans.
The symptoms, according to Dori, include headaches, muscle aches and “bizarre tingles.” There are dozens of strains of cat scratch fever, and Hirsch requires a different antibiotic. It took a while for Dori to respond to the drugs.
“There were three months where I took the antibiotics and no change,” she said, “then all of a sudden the hair stopped falling out and things looked better.”
“It’s tough,” she added. “You have to endure.”
Bennett Hirsch starting off thinking the same thing his wife had thought: old age was getting the best of him.
“Even at work I felt like I wanted to put my head down,” he said.
Then he started feeling tingling in his right foot, and when he’d lie down in bed, even the touch of a sheet on the top of the foot was painful. When his other foot blew up to three times the size of the other, Bennett knew it was something more than tarsal tunnel syndrome.
He’s been on antibiotics for three months and says he’s starting to get windows of energy back. He says he “firmly believes” Jamestown is the epicenter of tick-borne diseases.
The final presenter was Steve Tiexiera, the owner of Island Rubbish. Although the Howland Avenue resident hunts, he’s never had Lyme disease. “Knock on wood,” he said.
But his father has, and so has his aunt. “She’s been bit quite a few times, and I don’t think she ever got rid of it. She had it right until the day she died. She lived with joint paint for the last 10 years of her life.”
The next symposium sponsored by the Tick Task Force is on Wednesday, Feb. 12, from 6 to 8 p.m. at the library. It is the fourth of six forums. The event will focus on other New England communities with similar problems, and how they’ve combated the overabundance of white-tailed deer and their Lyme epidemic.