Mary Ellen Cirrito, who summers in Cutchogue and lives in Hempstead, remembers the day the “bottom dropped out” in her life when she experienced the first symptoms of what she would learn was Lyme disease. It was October 2007 and she had spent a weekend with friends during which she remembers “feeling way off. I couldn’t sleep and had a foggy feeling that I couldn’t shake and couldn’t explain.”
On her ride home, Ms. Cirrito, who is in her 50s, experienced palpitations and feared a heart attack. Five days of hospitalization followed at Winthrop-University Hospital in Mineola, during which she was subjected to “every test under the sun” before doctors told her, “We don’t see anything wrong with you; maybe you should see a psychiatrist.”
Her symptoms worsened in the months that followed — pain in her legs, feet and shoulders and numbness in her face and legs. She was also treated at Stony Brook University Hospital.
“I started to panic,” she said. She experienced a dramatic weight loss, short-term memory problems and emotional upset. “I thought that I might actually be losing my mind,” she said.
After four months of hell, an infectious disease specialist finally diagnosed Lyme disease. A course of oral antibiotics followed by intravenous antibiotics helped, but symptoms returned and the antibiotics didn’t provide relief. A neurologist finally was able to relieve the pain and neuropathy, although short-term memory remains a challenge.
Ms. Cirrito’s chronic symptoms aren’t typical of all Lyme disease cases, and remain controversial among medical specialists, according to Suffolk County Health Commissioner James Tomarken.
Scientifically, there’s no evidence that Lyme disease is chronic, Dr. Tomarken said. But he acknowledged that many people say they still suffer the symptoms long after taking antibiotics and initially being declared cured. “Some are left with chronic symptoms,” he agreed.
As the peak Lyme disease season arrives this month, he can’t predict whether the disease will be better or worse this summer. Suffolk County has figures only up through 2007: of the most recent years, they show that 542 cases were reported in the county in 2005; 190 in 2006; and 234 in 2007. The New York State Department of Health has more recent figures and they show that Suffolk County reported 542 confirmed and probable cases in 2008 and 498 in 2009.
Deer are believed to be major hosts for ticks and a rising population of them on the North Fork and in many suburban areas has prompted Southold’s Town Board to address the issue of how to thin the herd. More deer would seem to mean that 2010 might be a difficult year, but not all deer have ticks and not all ticks carry Lyme disease, Dr. Tomarken said.
But what about that Lyme disease vaccine that was marketed back in 2002? It’s off the market, Dr. Tomarken said. It’s not that there was anything wrong with it, according to the Centers for Disease Control. There was just an insufficient consumer demand for drug companies to spend money manufacturing it, Dr. Tomarken said.
What the doctor can offer is advice for avoiding being bitten by a tick that might be infected.
Wear light clothing on which the ticks will be apparent, Dr. Tomarken recommended. He advised against open shoes and even suggested that pant legs be tucked into socks and that you wear long-sleeved shirts when hiking through an area that might be tick-infested.
Check yourself, your children and pets for ticks, Dr. Tomarken said. And stay on well-cleared paths when hiking. Avoid sitting in the grass or on stone walls, where the ticks proliferate, he said. If you have long hair, tie it back when you’re gardening.
And consider using insecticides, although that doesn’t replace the need to check for ticks, the doctor said.
If you do find a tick, use a fine-nosed tweezer pressing it into the skin as far as possible to completely remove the body of the insect, he said. And if you are bitten, don’t assume you’re infected, he said.
But if you do experience flu-like symptoms — headaches, muscle aches and chills — you may indeed be infected and need antibiotics, Dr. Tomarken said. As for the classic bull’s-eye rash, that’s actually not very common, he said. When it does appear, it may be after you have been infected for a while. Getting treated early is wise, he said.
As for Ms. Cirrito, she lives with the symptoms day to day.
“I now have hope that even though I function at 70 to 80 percent, I will be able to start living again and to enjoy my life and the precious time that I have with my family.”
Her husband, Michael, has established the Peconic Bay Fishing Tournament to benefit the Lyme Disease Association. All proceeds from the June 12 fishing tournament, sponsored by Strong’s Marina in Mattituck, will go to the foundation, a volunteer nonprofit group, based in Jackson, N.J., that raises money for research, education and patient support.
“Seeing a loved one live with the disease, experiencing the confusion of the medical profession as to treatment options for the patient and realizing that most people have no idea how widespread and insidious this condition has become in Suffolk County has prompted me to establish the Peconic Bay Fishing Tournament as a benefit for the Lyme Disease Association,” Mr. Cirrito said.
The tournament is slated to take place from dawn to 5:30 p.m. on Saturday, June 12, with a barbecue at Strong’s that evening. The entry fee is $75 for anglers or $25 just for the barbecue.
The angler who catches the largest fish will received a $1,000 prize; there will also be junior division prizes. To register, call Mr. Cirrito at 516-292-1818 or e-mail [email protected]