It was July 2003 that I set out on a journey to Cape Girardeau, Missouri, to visit Edwin J. Masters, the doctor involved in hand-to-hand combat with the Centers for Disease Control and Prevention over the existence of Lyme disease in the southern United States. Working with a few intrepid colleagues, Dr. Masters managed to generate powerful evidence for Southern Lyme, though his evidence was continually undermined.
For two days straight I sat with Dr. Masters in his oversized basement, reviewing document after document showing how data had been cast to shed doubt on the disease. Ed Masters' story sheds light not only on Lyme disease but also the dangers we all face when medicine is politicized and studies skewed. His great persistence finally led to recognition of Masters' disease, the Lyme of the south.
The heroic Dr. Masters died on June 21 2009. In his honor, I'll spend several days retelling his sprawling, riveting, and most important tale.
Front and center in the debate over the existence of Lyme disease in the southern U.S. was the country doctor, Edwin J. Masters of Cape Girardeau, Missouri, who reveled in fighting for a cause.
It was near the start of his career, in 1979, that Masters wrote to his US Congressman, an ultra-liberal in a region of Midwest moderates, asking if he'd voted himself a raise. The Congressman, Bill Burlison, wrote back claiming he couldn't remember how he voted on his pay raise, but if the doctor wanted to know he could look it up himself.
Incensed at the rudeness, Masters' father-in-law alerted the media, and the exchange made TV news. Burlison retaliated by reporting Masters to the Federal Election Commission for writing a political missive on medical clinic stationery (an illegal tax deduction.) But Masters, a self-described "Eagle Scout and a stickler for every last detail," had proof in the form of cancelled checks that he'd paid for the stationery himself. Backed by the evidence (and the American Civil Liberties Union), Masters lashed back in anti-Burlison opinion pieces emblazoned on clinic letterhead and sent to newspapers throughout the State.
As election time neared, the drama increased: Whenever Burlison's opponent, conservative Republican Bill Emerson, couldn't attend a debate, Masters came in his stead. Once word got out, people crowded the debates not to see the candidates, but to watch the engaging Dr. Masters. A six-term incumbent, Burlison lost the election of 1980 --and Masters' new friend, the freshman Congressman Emerson, was swept in.
Despite his love of the brawl, Masters was your quintessential hail fellow well met --if you wanted a congenial sports buddy or a friend to confide in, Masters was your man. Tall, affable, and classically handsome, with a swath of thick hair and a wide, friendly grin, Ed Masters found himself front and center in a fight he never sought -- documenting a new Lyme-like illness or Lyme disease itself, often present in areas considered non-endemic by the CDC.
He entered the fray when, as an amateur forester, he was asked to give a talk on Lyme at a forestry meeting in 1988. Because he'd never seen a case of Lyme disease, he prepared exhaustively, even borrowing slides from health departments in Minnesota and throughout the East. "I spent a year working on the talk," Masters says.
The lecture went fine, but when he returned home to Missouri he started recognizing what seemed like Lyme disease in patients of his own. The first such patient was a farmer, age 55, who'd been the picture of health for years. One day he came in, emotionally overwrought and said, "I ache all over, knees and ankles, I can't think clearly and I need help getting out of the combine."
Masters knew his patient's hobby was fishing, and asked him whether, in the course of that activity, he'd ever been bitten by ticks. Of course he'd been bitten,the farmer responded, like anyone who fished. In possession of a good-sized collection of Lyme rash photos following the forestry talk, Masters took some out and asked the farmer to look at them. Had he ever noticed one of these?
"I had one of those last summer," the farmer said, explaining that he'd been going downhill ever since. First Masters tried to rule out any other cause for the illness. But when he could find nothing else the matter with the farmer, who was headed for disability, Masters treated with antibiotics. Not only did the farmer recover, but one year later he was so full of energy he expanded his operation by buying an adjacent farm.
Now that Masters knew what to look for, he started seeing Missouri Lyme in other patients, too. Not only did they have the typical erythema migrans rash,but also swollen joints, meningitis, neuropathy, and other specific hallmarks of the disease. Masters sent their blood into a lab, and many tested positive on the ELISA, the standard Lyme disease test of the day.
Thus validated, Masters reported his cases to the Missouri Department of Health, but his reports were ignored. If he'd read just a couple of articles on Lyme disease, he might have backed off, but after a year of prepping for his forestry talk he couldn't believe he had it wrong. So he started documenting the cases as precisely as he could. Every erythema migrans rash warranted an entire roll of film, and he made sure to photograph a rash and face together so he wouldn't be accused of recycling the same rash again and again. In preparation for the day that better tests would come, he obtained a special refrigerator for his office and began to store samples of patient rashes and blood.
READ PART II HERE
To be continued, Adapted from Cure Unknown, Inside the Lyme Epidemic.(St. Martins Press, 2008)