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.
PART IV (CONCLUSION):
By summer of 1994, Masters and Denny Donnell had resigned from the CDC effort and struck out on their own. Working night and day, the Missouri researchers were able to execute two preemptive strikes -- a detailed letter of objection to the Journal of Infectious Diseases, where the CDC would be submitting the manuscript, and an article of their own for the journal, Missouri Medicine.
They were so efficient that their article in Missouri Medicine was actually published first. There, in July 1995, Masters and Donnell presented the results as they saw them: Missouri patients fulfilling the strict CDC surveillance definition for Lyme disease had been documented in significant number, and there was growing evidence that lone star ticks were infected with a a still-unidentified spirochete representing a new species of Borrelia.
When the CDC article came out in the Journal of Infectious Diseases a month later, cooler heads had prevailed. Whether due to further reflection from the authors or pressure from the editor who had reviewed Ed Masters' critique, the final, published article conceded the possibility that some lone star ticks were infected with a new spirochete, but, the CDC emphasized, likelihood was low. Instead, said officials, the rashes in Missouri -which they called STARI (for Southern Tick-Associated Rash Illness) might be allergy to tick saliva. In the extensive acknowledgement section of the paper, in which dozens of physicians and scientists were thanked for help and guidance, Ed Masters wasn't mentioned at all.
It would take a world class entomologist to put it all together, explaining the rationale for a southern version of the disease. That scientist was James. H. Oliver, Jr., Callaway Professor of Biology and Director of the Institute of Arthropology and Parasitology at Georgia Southern University. The first thing Oliver did was determine that mice through the Carolinas, Georgia, Florida, Alabama, and Mississippi tested positive for the Lyme disease spirochete, Borrelia burgdorferi, generating as many reactive antibodies as mice from Connecticut.
Oliver later learned that southern Lyme is transmitted most often by the lonestar tick, which carries a spirochete that is still unknown. (Evidence is mounting that the unknown spirochete may be nothing more than an alternate strain of northern-style Lyme) But there's more. Oliver has ultimately found a range of new Southern ticks transmitting a pastiche of borreliae. And he's recently reported a unique Southern strain of B. burgdorferi with outer surface proteins so unusual they are undetectable on blood tests used up North.
"When you consider Jim Oliver's findings," said Ed Masters, "comparing northern stuff to southern stuff is like comparing a pedigreed world champion poodle to a junkyard dog."
Despite such differences, Masters held that "Lyme-like illness deserved Lyme-like treatment." And he warned northerners to beware: The term "Southern" in the CDC's name of Southern Rash-Associated Illness could be most misleading of all. The aggressive lone star tick has expanded its range relentlessly. Found up the East Coast as far north as Maine and throughout the Midwest, it carries Master's disease and a host of other illnesses -including the Southern versions of babesiosis and ehrlichiosis-- wherever it goes.
The CDC, for its part, has finally agreed that the disease actually exists --and that it may well be caused by a spirochete, in fact, a Borrelia; that's a victory for Ed Masters, who fought hand-to-hand combat with the government over the reality of a Lyme-like illness in the South and southern Midwest for almost twenty years.
But even as the protagonists agree on more facts, the philosophical divide remains vast. Where Masters saw "Missouri Lyme" as just one borreliosis on a spectrum, the CDC contends that STARI is a rash-only illness largely unrelated to Lyme. While Masters reported continued illness if treatment was delayed, the CDC insists, to this day, that its studies have ruled that out. While Masters recommended Lyme-like treatment, the old guard says that since no one has found a spirochete, antibiotics should be used sparingly, if they are used at all. In the end, Ed Masters sought a unified field theory of borreliosis that included that Southern patients, while the CDC divides the spectrum into smaller and smaller parts.
We were sitting in Ed Masters' basement, a room so long it had the feel of a football stadium. The length worked well: Ed Masters' full and varied life, starting from his earliest days, splashed in photographs and news stories across the walls. I saw Ed Masters, a strapping, athletic Dartmouth kid, holding a basketball." I always liked to run with that ball," he said.
Then there was the section devoted to his fight with the Congressman, the one he chased from office a quarter of a century back: Reading the news clips on Ed Masters' wall, you got the story straight: the initial dispute, the weekly editorials written on medical clinic stationery, and finally, a Congressman toppled from office, never to be heard from again. Masters noted how ironic life was, how everything that went around came around, in the end.
He was a tempting target: "With my data, nothing fit anymore --not the tick, not the microorganism, not the serology," Ed Masters said. "One person told me, ‘Masters, they were having a big old fine party, and you're the turd in the punchbowl. You spoiled it.'" And so he had. #THE END
Adapted from Cure Unknown, Inside the Lyme Epidemic.(St. Martins Press, 2008)