Joshua Cutler had a thriving career as a network engineer for the federal government in 2006 when he suddenly fell ill.
Cutler, of Winchester, Va., once had an active life as a young father who raced cars on weekends and enjoyed time with his family, but he suddenly found himself overcome with fatigue and feeling perpetually sick. He slept 18 or more hours a day.
The consequences were catastrophic. He lost his house and car. His family struggled to keep its head above water.
After a series of false starts, Cutler found a doctor who he said correctly diagnosed his condition as chronic Lyme disease and began a treatment plan that has made his condition marginally better.
The problem for Cutler and others like him is that the U.S. Centers for Disease Control and Prevention and infectious-disease specialists who draft treatment protocols for Lyme say he isn't sick - at least not with Lyme. The view of the CDC and the Infectious Diseases Society of America is that Lyme is treatable with short courses of antibiotics and that it is not a chronic condition. Any symptoms that persist likely won't be helped with more antibiotics.
Cutler and others like him tried to press their point Saturday at IDWeek2014, an annual meeting of the Infectious Diseases Society of America and other specialists at the Convention Center, attended by 5,658 scientists and physicians this year.
Outside the building on Broad Street were approximately 75 demonstrators, urging mainstream physicians and federal health officials to broaden their approach toward diagnosing and treating the disease.
Relations were testy. Cutler and several others were ejected when they tried to get in to an Infectious Diseases Society of America dinner Friday night.
"What we would like to see is the guidelines changed and more research dollars going to this issue," said Cutler, whose group, the Mayday Project, is pressing for change.
Like Cutler, the protesters all told heartrending stories of dealing with disease symptoms for years after conventional treatments failed. They have lost homes, spent down 401(k)s, and endured great physical hardship. They believe modern medicine is too beholden to insurance carriers and drugmakers to follow the scientific truth wherever it leads.
Because they say traditional medicine has let them down, Cutler and others have turned to what they call "Lyme literate" physicians who dispense with the official protocols and offer treatments such as long-term, high-dose intravenous antibiotics, which can have damaging health effects.
"These doctors have lost their homes and businesses" for going against the grain, said Nancy Brengle, a West Virginia mother who joined the protest Saturday and who says she has chronic Lyme disease.
The response of conventional medicine to the chronic Lyme movement has been unyielding, and in some instances acerbic. Paul Offit, an infectious-diseases specialist at Children's Hospital of Philadelphia and co-inventor of the rotavirus vaccine, in his book Do You Believe in Magic? The Sense and Nonsense of Alternative Medicine describes physicians who offer alternative Lyme treatments as quacks out to make a buck.
Science seems to be on his side. In his book, Offit wrote that in four separate studies of long-term antibiotic therapy, using one group of patients who receive medication and another who received only a placebo, there was no discernible difference in outcomes. He also faults physicians who promote alternative cures for claiming the Lyme bacterium is able to "hide" in the body, and thus does not respond to short-term treatment.
"The claim by Lyme-literate doctors that bacteria are hiding out of sight of researchers [despite appropriate antibiotics] is akin to the claim by Bigfoot-literate people that only they know the monster exists," Offit wrote.
Lyme disease is a bacterial illness transmitted to humans through the bite of infected black-legged ticks. Symptoms include fever, headache, fatigue, and a characteristic skin rash. According to the CDC, the disease can spread to joints, the heart, and the nervous system if left untreated.
The disease is particularly vexing in this region. Nearly 75 percent of the nation's confirmed Lyme disease cases come from Pennsylvania, New York, New Jersey, Connecticut, and Massachusetts. Pennsylvania, with 4,981 confirmed cases in 2012, has among the highest incidence of Lyme disease in the country, and the southeastern portion of the state is a particular hot spot. According to CDC statistics, Chester County ranks fourth in diagnoses among all counties nationwide.
Stephen Calderwood, president-elect of the Infectious Diseases Society of America and chief of the infectious-diseases unit at Massachusetts General Hospital in Boston, said he was convinced that many people who have suffered from Lyme have persistent symptoms after treatment with antibiotics. What is unknown is the cause. It is entirely possible ongoing symptoms are the result of an immunologic response, long after the Lyme bacterium is gone, he said. Like rheumatic fever, an inflammatory disease that damages heart tissue and that can occur after an infection, there may be similar after-effects from Lyme, Calderwood said.
More research is needed, he said.
"We are all desperate to find out what works and make people feel better," he said.
The clash between proponents of the idea that Lyme can be a chronic disease and the American medical establishment reached a boiling point in 2006 when Richard Blumenthal, now a Democratic U.S. senator from Connecticut but then the state's attorney general, filed suit against the Infectious Diseases Society of America after it issued guidelines governing treatment of the disease. Blumenthal claimed the group had failed to properly consider alternative treatments, and had established an unauthorized monopoly in violation of antitrust laws.
The two sides settled in 2008 when the society agreed to form a new committee to review its rules and take steps to avoid conflicts of interest. After an exhaustive review, the new committee found once again chronic Lyme did not exist.