Last in a series.
FLORENCE, Ore. — In the middle of lunch at a riverside café, Todd Murray paused. His blue-gray eyes took on an intense stare as he looked out across the Siuslaw River.
A beat later, the forgotten word came to him. “Acorns,” he said. And the 49-year-old doctor wondered, as he has for almost four decades: Was his poor word recall from the Lyme disease?
When he was a sixth-grader in Lyme, Conn., in 1975, Murray began suffering mysterious joint pain. His complaints, along with similar symptoms seen in his brother and other area children, led doctors to identify a new disease linked to the growing population of blood-sucking ticks in the Northeast. Lyme disease, then called Lyme arthritis, hobbled the young sports enthusiast for much of his school years and helped motivate him to become a doctor.
But Murray’s medical books have no explanation for the strange symptoms he has long experienced: the involuntary muscle twitching, a sporadic irregular heart rhythm, and the maddening inability sometimes to extract words from his brain when speaking.
“Is this normal, is it Lyme, or is it something else?’’ said Murray, who recently left his job as medical director of a hospital emergency department in coastal Oregon.
Murray was present at the discovery of Lyme, and his life since then epitomizes how much we have learned about the disease, and how much we haven’t. Many years later, he knows the maddening frustration of not knowing.
Even as Murray was deciding to devote his life to medicine, he was questioning whether the profession could root out the origins of his puzzling symptoms, or even help him feel better. Since then, he has felt occasional anger toward the doctors who discovered Lyme disease because they did not reach out to treat him with antibiotics after the illness was found to have a bacterial origin. He eventually received treatment after seeking help but he wonders whether a quicker response would have helped him feel better.
“It was a shadow hanging over me,” he said in an interview.
Today, Murray is no closer to understanding the reason for his strange symptoms. But he now accepts the limitations of medicine. He no longer needs an answer.
1975: A malady surfaces
Murray took his medical school admission test in 1989 with a catheter in his arm to deliver intravenous antibiotics, in hopes that it would treat his ongoing symptoms.
The previous year, plagued by the nagging suspicion that his chronic symptoms stemmed in some way from Lyme disease, he visited a doctor who believed the Lyme bacteria could cause an infection that persisted even after a patient received the recommended course of antibiotic treatment. It was a controversial idea, opposed by many in the medical establishment. There, Murray received his first antibiotic treatment for Lyme since falling ill more than a decade earlier.
But the 25-year-old still wasn’t right. His concentration was off. He was tired. When he spoke, his words sometimes would be reversed: Chest pain came out “pest chain.”
He went back to the doctor, who prescribed intravenous antibiotics for eight weeks.
Two months after the catheter was removed, Murray was admitted to a New York hospital with an irregular heart rhythm, the first of what would be several hospitalizations for this problem over two decades. Again, he wondered whether it was Lyme.
It was impossible not to think back to 1975. After a party at a swimming hole, Murray had come down with a fever, a headache, body aches, and throbbing neck pain. At his sister Wendy’s eighth-grade graduation days later, his head had hurt so bad, he recalled, “I wanted to cry out in pain.”
His brother Alex — now a wine specialist with Legal Sea Foods — had been the first in the family to get sick, with flu-like symptoms, then facial paralysis on one side, known as Bell’s palsy. Alex’s knees became so swollen that crutches were the only way he could get around. A year later, doctors recommended that Todd use crutches, too, to rest his bloated knee.
Murray’s mother, Polly, began chronicling the strange symptoms of her sons and, soon, her husband, too, in careful, loopingscript. Others nearby were added to her list. Eventually, her notations reached doctors willing to investigate the cause of the mysterious affliction.
Meanwhile, Murray acquired an occasional stutter and began reversing the beginning letters of words.
“The fact that I had a disease which nobody seemed to understand, and which was being described only as I experienced it, and which I never seemed to recover from, left me feeling hopeless at times,” Murray said in an e-mail interview.
Unable to play sports, he played the clown. He earned the nickname “The Crip” from his best friend, and played along, occasionally hamming it up by pretending he had a horrible palsy and falling to the ground. Despite the fatigue, pain, and strange rashes that marked his high school years, ambition also took seed. Murray developed an interest in math and science, sharpened by the vast amounts of time he spent in hospitals and doctors’ offices.
By the time the corkscrew-shaped bacteria that cause Lyme were discovered in 1982, Murray, a busy sophomore at Brown University, barely noticed.
But after graduation, as he began to seek answers for his lingering health problems from doctors, he could not get a question out of his head: Why did nobody offer him treatment after scientists identified the bacteria, called spirochetes?
“I know nobody intended to just let me go without antibiotics and see what happened, but here you have a disease caused by a spirochete, as syphilis is. . . and the decision was not to treat, though a patient with syphilis certainly would have [been treated],’’ Murray said.
Dr. Allen Steere, who discovered the disease and treated Murray early on, said by e-mail that he stopped being Murray’s doctor in 1979, three years before the cause of Lyme disease was known and six years before he published a paper showing that antibiotics helped with Lyme arthritis.
At one point in the mid-1980s, Murray’s mother called Steere and asked whether he would prescribe antibiotics for her son, he said. Steere declined, uneasy about prescribing over the phone, but his notes show that his office asked whether Murray could come to the clinic. He did not.
In 1991, Steere’s group evaluated Murray again as part of a study on long-term neurological problems seen in some people who were infected with Lyme. “Although Todd continued to have some symptoms, his test results were not suggestive of active infection, and we did not suggest further antibiotic therapy,” Steere said, noting that Murray by that point already had received the recommended course of intravenous antibiotics for neurological problems associated with Lyme.
Many Lyme sufferers and some doctors are convinced that the bacteria that cause the disease can — especially if not caught early — evade antibiotics and the body’s immune system by burrowing into joints, the nervous system, and other tissue, and wreak sustained havoc. Most infectious disease specialists, however, say that there is a lack of convincing evidence to support the idea of a persistent infection after antibiotics.
Though Murray’s medical school training at Columbia University taught him that patient care must be guided by rigorous research, he still wondered whether earlier treatment of his symptoms might have made a difference.
Searching for answers
Murray’s dissatisfaction with his medical care is striking, especially because he’s a doctor himself. But it is a common experience of patients with unexplained symptoms.
Millions of US residents suffer chronic health problems, be they headaches or tingling fingers, for which the medical establishment has not been able to pinpoint a cause. Such unexplained long-term issues, research shows, can account for as many as 1 out of 10 doctor visits.
Some patients, like Murray, wonder whether the problems originate from a specific event: a car accident, a tick bite, or even a seemingly benign fall. Others do not have an obvious culprit and search for answers through tests and countless doctor visits.
Yet these patients often grow frustrated with the traditional medical system, where office visits are measured in minutes and people without a positive diagnostic test may be viewed skeptically or referred to a psychiatrist.
Many chronically ill people, in fact, suffer from depression or other mental health issues. In one study of patients who had persistent symptoms lasting more than two years and made an average of 12 doctor visits per year, 94 percent had depression, according to Dr. Robert C. Smith of Michigan State University.
Doctors say they treat what they can, which is why they frequently refer patients to therapists. But patients typically attribute their psychological symptoms to the underlying medical problem and resent doctors who suggest treatment only for the depression or anxiety. Some seek relief and answers outside the medical establishment and try unproven therapies.
Now, some physicians are searching for common ground.
Medical schools do not train doctors “in symptoms that are difficult to explain,” said Smith, who is developing a curriculum to better teach doctors to deal with such problems.
Smith and other doctors say that people with unexplained chronic problems should be treated similarly to patients with known chronic problems: Get them off medicine that does not appear to be working and take small steps to begin to alleviate symptoms.
Some doctors who believe Lyme can evade antibiotics strongly disagree. Dr. Richard Horowitz of New York, who says he treats people for persistent Lyme, said that they may have other tickborne infections and that he has identified as many as 16 overlapping medical problems contributing to persistent illness in a patient.
“Chronic illness has multi-factorial causes,’’ said Horowitz, author of “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease.” “People need to know that there are answers and they can have hope.”
Murray is not sure what the answer is. He regularly sees patients who have illnesses that originate in their mind, but he also sees others with real problems for which there is no clear-cut diagnosis. He suggests that patients seek opinions from different physicians rather than try to prod the same one to make a new diagnosis, and that they see a specialist if their primary care doctor does not seem to be responding adequately. And, he adds, patients should go to doctors with an open mind.
“Physicians tend to become a little more suspicious of psychogenic illness if patients seem overly anxious, focused on a particular diagnosis, or write down extensive lists of symptoms or keep excessive logs of their experiences,” he said.
At last, moving on
Gradually, Murray realized that his preoccupation with Lyme disease as the possible cause of his health problems was not helping.
“It’s not as though the antibiotics really made me feel better; they really made no difference, except that I felt that maybe if there were [Lyme bacteria] hiding out in my brain I perhaps had finally gotten them,” he said. “But there was no way to objectively know that.”
Murray began looking forward. “I needed . . . not to think every day about it,” he said.
Work helped. After a residency in Philadelphia, Murray moved to Massachusetts to work at Holy Family Hospital in Methuen. He married in 2000 and moved to California with his wife, also a physician, for her residency the next year. In 2004, he became medical director of the emergency department at an Oakland hospital. After he divorced, he moved to Florence to take a job at Peace Harbor Hospital.
Professional achievements and deep friendships that Murray made at work “helped me to accept that I am OK despite my earlier life being so tainted by Lyme,” he said.
His family also drove his attitude change. Murray married again, to Inajara, and the couple now have two young children. Murray is intent on projecting healthy living to them.
Murray still does not know whether he has a chronic infection, but he has in time come to a place of peace.
“There is this Eastern idea that you are what you think, and you can’t spend your life struggling against things which you can’t change,” he said. “I took the Lyme disease treatment as far as I could, and at a certain point, knowing I wasn’t getting worse, I had to just accept that I had to move on.”
Murray starts a new job this month as an emergency physician in Sarasota, Fla.Beth Daley now works for the New England Center for Investigative Reporting but wrote this article while at the Globe. She can be reached at firstname.lastname@example.org. Follow her on Twitter @BethBDaley.