Sue and John Gibbons suffered for years from various physical ailments, ranging from body aches and headaches to fatigue and confusion.
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.
More than a year after the South Bend couple also was diagnosed and both began long-term treatment of antibiotics, they are relieved. But they also are still stung by the general disbelief of their friends and the lingering controversy in the medical establishment over the testing, diagnosis and treatment of what's known as chronic 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."
Deciding to learn more, Piccirillo worked with Lyme specialists on the East Coast.
"Looking back, in medical school, we probably had 10 minutes on Lyme disease," says Piccirillo, who is 48.
The disdain the Gibbonses have felt from doctors and others they've encountered is certainly real, he says.
"A patient will go back in (with a note from him) and their doctor will say, 'I don't think this is what you have,'æ" Piccirillo says. Sometimes, then, a patient backs off from Lyme treatment, or the family doctor "fires" the patient from his or her practice.
"I think it is fairly common for people to think you're crazy," he says.
But it's slowly changing, he says. "I've had more doctors call and say, 'I'm looking more into this; can you send more information?'æ"
A 2010 documentary film, "Under Our Skin," examined the controversy surrounding chronic Lyme. It was critical of the medical community for not recognizing the condition and not supporting doctors trying to treat it.
Piccirillo lauds the fact that the Infectious Diseases Society of America announced earlier this year that it will re-examine its guidelines involving Lyme.
The administration of long-term antibiotics is not unheard-of in medicine, Piccirillo says, pointing to their use in similar types of conditions, such as AIDS and syphilis.
But Dr. Paul Mead, an infectious disease physician and medical officer based in Fort Collins, Colo., with the Centers for Disease Control, urges caution.
If you don't really have chronic Lyme - and the accuracy of testing itself is controversial - he says the danger is not only that there are underlying conditions that might not be treated properly, but also that long-term antibiotic use can cause its own complications and even death.
"Several studies have looked at long-term treatment with antibiotics," Mead says, "and the long-term treatment has not been shown to be more effective than a placebo."
Mead is aware of strengthening advocacy groups that criticize the CDC and other medical organizations for not recognizing the severity and rapid spread of Lyme outside of the most hard-hit parts of the country: the East and West coasts and upper Midwestern states of Minnesota and Wisconsin.
"There's no question that it's a big public health problem," he says, pointing out that it's now the most common disease spread by animals or insects in the United States. He acknowledges that left untreated, Lyme can have serious long-term and varied consequences.
But Mead says studies that have reportedly cited the Lyme bacterium being found in sand fleas, mosquitoes or bedbugs or in other types of ticks have not shown that they are capable of spreading the disease - he describes a complicated web of tick development on which Lyme is contingent - or that it's even the same strain of bacteria.
"As with everything in science, you can never say never," Mead says. "But there's really no good evidence that this is happening."
Some in what Mead calls the " Lyme advocacy world" claim that many lab tests for Lyme are inadequate, including the CDC's. So does Hunt. But Mead says the science is more complicated than they're realizing, including what stage the bacteria is in and how the body's antibodies are reacting to it.
"I guess the question that's not often asked is, why would mainstream medicine and the media not want to acknowledge it?" Mead says. "We acknowledge all kinds of disease. We have no vested interest in downplaying how serious Lyme disease is."
The CDC was updating its Lyme disease Web page even last week, he says, and plans to directly target more information to groups at greater risks of contracting it, such as landscapers and golfers.
Living with Lyme
While the CDC beefs up its efforts to spread the word about Lyme, Kenneth Kanczuzewski is preparing to do the same.
Kanczuzewski is treasurer and spokesman for the Izaak Walton League west of South Bend. As in other wildlife- and woods-heavy parts of the county, he knows Lyme is a risk for the league's visitors. The group will post signs at its front gates that feature images of ticks with the headline "Prevent Lyme Disease!" and suggest ways to do so, including wearing repellent with DEET.
He points out that deer ticks can be found all over the county, but the group wants its visitors to be cautious while enjoying the outdoors.
"I tell everybody to watch everybody," he says. "People just need to know what they're seeing ... but I can only reach my members."
The Gibbonses, too, want people to be more aware.
John Gibbons, 49, remembers a tick that embedded into his skin 11 years ago. But neither he nor Sue really know how they contracted Lyme.
John's treatment has been so effective, he says, that he has resumed the running that had become impossible because his feet hurt so badly. At one low point, he had to pull his car over while driving because he had forgotten the way home; now, his mind is sharp again.
Sue, 51, still struggles with fatigue, but much of her pain is gone, she says. They both take probiotics and other supplements to combat the antibiotics and keep their immune systems strong, and they are routinely monitored.
She shakes her head over the long road they were forced to take for their diagnoses.
"Just because you can't tell me what it is doesn't mean it's fine," she says of doctors. "It just amazes me how little doctors know sometimes.
"We've had it easy compared to a whole lot of people with Lyme disease," Sue says. "Then again, there's a whole lot of people who don't feel well who don't know they have it."
Staff Writer Virginia Black: 574-235-6321 email@example.comCopyright © 2014, Los Angeles Times