They describe seeking out a parade of medical specialists and thousands of dollars' worth of tests that never provided satisfactory explanations or relief. Then a son with medical issues of his own moved to the West Coast and was diagnosed there with Lyme disease.
"It's a very, very lonely disease to have," Sue Gibbons says, sitting at her kitchen table. "It's just disheartening."
'It's here now'
Lyme disease was identified in the 1970s as a scourge of the East Coast, eventually named for its Ground Zero: Lyme, Conn. It is spread by a species of tick -- the deer tick -- which early in its growth cycle feeds on small mice who have the bacteria Borrelia burgdorferi. As they grow, the ticks prefer to feed on deer. When the too-small-to-see deer ticks attach themselves to draw blood from humans, as they will in the coming spring and summer months, they might pass along the infection.
On that much, everyone agrees.
"If you recognize it, it is mindlessly simple," says Dr. Robert Hunt, a South Bend infectious disease consultant. If a patient is diagnosed early with some classic symptoms, including fever and a rash resembling a bull's-eye, he or she can be treated with antibiotics for a few weeks and be done with it.
In the fall of 2009, Hunt confirmed Lyme cases contracted in St. Joseph County, rather than the historic method of patients merely bringing it back from other parts of the country.
"It's here now," Hunt says. "The physician community is well aware of this."
But if someone contracts Lyme and isn't treated quickly, it can attack other parts of the body, and symptoms can pop up weeks, months or even years later. Called chronic Lyme disease, it can insidiously attack joints and the nervous system, and lead to such effects as Bell's palsy, chronic fatigue syndrome and even paralysis.
Where the medical establishment tends to diverge is in the testing and diagnosis of chronic Lyme, and even in how the disease may be spreading.
Sue and John Gibbons sought out a local chiropractic doctor for relief, and when their son's case tipped them off to the possibility, that chiropractor arranged for specialized testing for Lyme, which came back positive.
They found a Lyme specialist in Chicago, Dr. Jeffrey Piccirillo, who also sees patients in central Iowa.
Piccirillo, who says he is among 40 Lyme specialists in the country, sees about 40 patients a week from 17 states, attracting a few new patients every week.
He says he began his work in Lyme about three years ago, after he was diagnosed himself.
Piccirillo says he had been an orthopedic surgeon since 1994. He was devastated when he developed a tremor in both of his hands so strong that he could not even eat soup from a bowl.
After 18 months of bouncing from specialist to specialist in search of answers, finally a neurologist said to him, "This could be Lyme disease."