Hard-to-see things like spirochetes or retroviruses aren't going to stop some flat-Earthers from labeling sick patients psychiatric, leaving them untreated for their real disease, rejected, and in pain. But for patients, things may be changing --because science is moving on.
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.
"I am not comfortable with the CDC's position that Missouri is the hole in the donut, and that somehow Missouri is a magical, ‘Lyme-free' zone and that these observed Missouri spirochetes have nothing to do with human disease." --Dr. Ed Masters, Cape Girardeau, Missouri
“I was living in two worlds,” Masters said. “I would go to conferences and present to academic experts, and they would say, “Hmmm, that’s Lyme disease. Then I would go back home to Missouri and the people from the CDC would tell me I was misdiagnosing all these patients. Diagnosis of Lyme disease based on the rash was controversial only in Missouri, and nowhere else in the world.”
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 massaged to undermine patients and cast doubt on their disease. Ed Masters' story sheds light not only on Lyme disease but also the dangers we all face when medicine is politicized and studies designed to undermine patient care.
Doctors could never explain the strange spikes of fever to 105 degrees Fahrenheit that hit me in hallucinogenic waves for more than a week that summer, or the gullies of sleep so black that, except for the nightmares, I thought I might be dead. When the fever broke and I noticed the sweating, it seemed just a consequence of summer. It was after the sweat leveled off that the headache-without-end licked its first noxious path through my brain. I would suffer that headache --an inexplicable migraine-- for seven long years, until I was treated for Lyme disease and its malarialike cousin in the tick --babesiosis.Human babesiosis presents just like malaria --but you can catch it in your own backyard in Lyme-endemic areas like California and the northeast. Today thousands of cases of human babesiosis are diagnosed each year in regions known for Lyme disease. But due to ignorance on the part of primary care practitioners, it can also go unrecognized and untreated for years as was the case for me. When Lyme patients don't get well, babesia is often the cause. Pictured at left is a grassy field on Nantucket Island, where the disease in humans was first found.
Can an infection really alter your personality? At least 65 different microbes have been recognized as causing mental symptoms; the proof lies in several thousand articles published in the medical peer review.
A man opened fire on a pastor near St. Louis, murdering him a a rain of gunfire. His family says the attack was provoked by psychiatric illness caused by Lyme disease. Can a tick-borne infection cause this kind of rage?
It would be wrong if the Connecticut chimp attack caused anyone to fear Lyme patients, or to think Lyme disease might send them on killer rampages like the rage-infected zombies in Danny Boyle's post-apocalyptic thriller, 28 Days Later. The sickest of the Lyme patients are likely to be found in bed.
Sitting next to Burgdorfer in a sun-drenched conference room at the Rocky Mountain Laboratories, I watched him remove from his ancient briefcase a handwritten chart that had withstood the test of time. Yellowed and creased, the paper listed microbes, six in all. "These," he told me, "are what I found in the Shelter Island ticks."
The meaning of cure is relative. For the patient, remaining symptoms can be disabling and life-draining. For the scientist parsing the data, such symptoms can be dismissed --as somatic, psychiatric, incurable, irrelevant to the illness at the start.
"What has happened to the medical profession I loved so much? What has happened to make physicians step out of the role of healer into the role of destroyer?" --Psychiatrist Virginia Sherr, Holland PA (pictured at left.)
It's time to start looking for environmental drivers of the autism explosion, a major study from UC Davis finds. The researchers rule out genes and say major culprits could be metals, pesticides and infections in the environment.
As psychiatrist Virginia Sherr, pictured here, recovered from her long illness, she began to view her patients through a different lens -and "listen with a third, even a fourth, ear." Says Sherr: "I began to hear them describe the same symptoms that had bothered me: pains in their back, headache, enormous fatigue, night sweats, sinus problems that wouldn't quit." For a fleeting millisecond the impossible notion that she, herself, might be infecting her patients flashed through her mind. But her training as a psychiatrist quickly kicked in, causing her to question, instead, whether she had been swept up in a case of reverse transference. In the end, Sherr realized the truth. The patients, too, had significant clinical signs and symptoms and they needed to be worked up. "I realized it had nothing to do with me."
The news that the majority of people with chronic fatigue syndrome had been subject to child abuse or trauma struck me as outrageous. Having come through the Lyme wars, where patients are routinely mislabeled "psychiatric," I viewed this kind of assertion as a red flag.
Despite her own credentials as a physician, Holland PA psychiatrist Virginia Sherr, pictured here, was considered a "whiner" by other doctors. "I tried to explain that I was in serious difficulty to one physician after the next, as I gasped for breath on exertion, had painful muscle spasms in the thighs, face, and posterior shoulders, and experienced deep, aching, burning pain." Her symptoms became so severe, in fact, that Sherr felt as if "the self I knew was dissolving."
The CDC has documented human infection with a species of bartonella bacteria most commonly found in sheep. The news is important for psychologists and psychiatrists because bartonella has been associated with neuropsychiatric disease.
Adults lost homes and jobs. Children lost their childhoods when cognitive or emotional disabilities forced them to be home-schooled, sometimes for years. The impact was major, but mainstream experts continued to characterize their symptoms as "minor," "nonspecific," and "vague."
The first time I met a group of severely disabled Lyme disease patients I spent hours listening to their stories, some of them heartbreaking, and mourned, with them, their lives of frustration and pain. A month later, when I met the same patients again, several could not recall me. At first I was insulted. Had I been that forgettable, my empathy that banal?
It's easy to see why we had such a cavalier, even reckless, attitude toward the environment, and why, at first, we chalked Jason's flu, cough, and joint aches up to ordinary childhood ills. Our pediatricians at the Mount Kisco Medical Group, northern Westchester's largest medical practice, said all of it was routine. We were concerned in 1995, with the onset of shooting pains through Jason's arms and legs, but the doctors said these "growing pains" were normal.