BROOKFIELD -- State Sen. David Cappiello, R-Danbury, shared his experiences with Lyme disease during a meeting of the local Lyme disease task force Monday.
Cappiello, who spoke publicly about his battle with the tick-born illness during the meeting, said he was diagnosed in May -- shortly after experiencing exhaustion, fatigue and extreme pain.
"At first I thought I was just tired from campaigning," Cappiello said.
"Then one night my wife lightly brushed against my hair and it felt like someone had just dragged razor blades across my head.
The pain was excruciating."
Cappiello, who likely received the disease from ticks in his own backyard, said he was one of the lucky ones.
The disease was diagnosed within two weeks and he is now symptom free.
Members of the Brookfield Lyme Disease Task Force, who also shared their experiences Monday, weren't as lucky.
Local resident Monica Bolesta said she suffered with the disease for more than a year before it was properly diagnosed.
"I was in so much pain that I couldn't talk or get out of bed," she said.
"I felt like someone lit a match to my body.
I would cry, because I couldn't get out of bed to help my kids onto the school bus."
Bolesta and other members of the task force, which was formed five months ago to promote education and prevention efforts, were upset over the response to Lyme disease by state and federal officials over the past 30 years since the illness was first identified.
"I don't understand why the state isn't doing more," Bolesta said.
"There is no research being done into the disease."
Maggie Shaw of Newtown, also a member of the task force, said it was more than six years before she was properly diagnosed.
Her three children and her husband have also been diagnosed.
She said under-reporting of the disease and a failure of medical officials to properly diagnose the ailment makes it seem as though Lyme disease isn't a big problem in the area.
When she was diagnosed with Lyme disease in 1999, she said, a survey of ticks in Newtown found about 20 percent carried the disease.
A similar survey last year showed the rate had increased to nearly 70 percent.
"Children run the greatest risk," she said.
"Often they can't articulate the symptoms they are experiencing to adults, especially if they got it at an early age and they don't know what life is like without the pain."
The task force, to provide education about the disease, helped to have the curriculum "The Time for Lyme" instituted in the town's school system.
It was created by Greenwich education officials and provides learning tools for students in several grade levels from kindergarten to high school.
The task force also helped the local health department receive a state grant for the disbursement of 1,000 Lyme kits, a first aid kit that includes tools to properly remove ticks.
Local resident Russ Cornelius developed the kit about five years ago.
"There are kits available for snake bites but nothing for removing ticks," he said.
"And how often do people get bit by snakes?"
Cappiello said he would like to see a greater effort by the state Department of Environmental Protection to control the deer population as a way to curb Lyme disease .
"I'm a big animal rights supporter, but we have to be aware of what's going on," he said.
"There is an overpopulation of deer statewide."
Cappiello said while he supported legislation that would have required the state DEP to control the population, "extremists got in the way of the bill."
He added that members of the medical community also have to be "on the same page" when it comes to the disease.
"There are some in the medical community that know very little about Lyme disease and there are others who are experts," he said.
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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bettyg
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good find jennie,
suggestion; to show it's a STATE SENATOR who has lyme! gives folks more of an encentive to write letter to editor back reminding later public about our 2 lyme bills in public.
also, tincup posted here lately about the LOW NUMBERS OF LYME DIAGNOSED and the cumulative totals of CDC reported cases by state 1980 to 8-16-08 !!!
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