Bill aims to spotlight Lyme disease issues
Norwalk Advocate
By Christiana Sciaudone
Staff Writer
STAMFORD -- Kelly Lyons had been too skinny for as long as she could remember. Fatigue and weakness plagued the 16-year-old. She had double vision through elementary school, which surgery only worsened.
Then her brother, Jamie, 13, at times, couldn't walk. His throat would close up; he had asthma and allergies. His pupils stopped dilating.
Their mother, Ann, thought she had arthritis, which she treated with ibuprofen.
The family, which lives in the Old Greenwich section of Greenwich, dealt with the long list of health problems individually, until Jamie, then his sister and mother, tested positive for Lyme disease early this year.
The family spoke about their plight with U.S. Sen. Christopher Dodd, D-Conn., at a news conference yesterday at Stamford Hospital.
"The rising number of the infected indicates that far more needs to be done," said Dodd, who yesterday introduced the Lyme and Tick-Borne Disease Prevention, Education and Research Act on the floor of the Senate.
The bipartisan legislation, co-sponsored by U.S. Sen. Rick Santorum, R-Pa., seeks $100 million for increased and coordinated federal prevention, treatment and research of Lyme and other tick-borne diseases, and the establishment of an advisory committee of federal agencies, patient organizations and clinicians.
Dodd said he expects the bill to pass easily considering the number of states hit by the disease.
Lyme disease comes from ticks, which get infected by sucking on white-footed mice. Symptoms, which can range greatly, include fever, headache, fatigue, skin rash, facial paralysis, joint swelling, loss of coordination, liver malfunction, memory loss and hallucinations.
In 2003, 21,273 cases of the disease were reported nationwide, which represents a decrease of 23,763 from 2002, according figures from the federal Centers for Disease Control and Prevention.
However, Dr. Michael Parry, director of infectious diseases and microbiology at Stamford Hospital, noted that the change is due to controversial new reporting procedures and that actual number of Lyme disease cases is far higher and growing.
Last year, 18 cases of Lyme disease were reported in Stamford and eight in New Canaan, according to the state Department of Public Health. Norwalk had 19 cases, Darien had 12 and Greenwich had five.
Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics, according to the Centers for Disease Control.
However, "lab tests are not as good as we want," Parry said. "The diagnosis is very elusive, very subtle."
Parry said that of about 1,300 tests given each year, about 10 percent come back positive, though the results aren't always accurate.
"We have problems of underdiagnosis, particularly for people who have been ill for a long period of time," Parry said. Problems of overdiagnosis also exist, he said.
"We as clinicians are very frustrated and patients are very frustrated by the lack of tools to make a better or the right diagnosis," Parry said. "We need help . . . both on the treatment side and on the diagnosis side."
The Lyons family -- except for Dad, who was spared -- are now all on antibiotics, and each has gotten worse before getting better.
For seven weeks in late winter, while on medication, the disease ate the lining of nerves in Jamie's feet, so he couldn't bear to have anything -- not even socks or bedsheets -- touch them, Ann Lyons said.
Yesterday, he was in much better condition, and walked without a problem, though he wore blue sunglasses to protect his pupils.
His mother, who began the antibiotics months ago, no longer has symptoms of arthritis.
Kelly, who started taking antibiotics in June, is optimistic. "I look forward to just having more energy," the teenager said, "to just living a normal life."
