BITTEN BY UNCERTAINTY
Drawing the lines in the Lyme disease battle
Angry patients question treatment — or lack of it — yet with tests often inconclusive, some doctors think the condition is overdiagnosed. And the split is widening.
By Beth Daley
| GLOBE STAFF
JUNE 02, 2013
MATTHEW CAVANAUGH FOR THE GLOBE
First in a series of occasional stories.
Dr. Allen Steere, a slender Massachusetts General Hospital rheumatologist, clicked on a slide as he recounted the early days of Lyme disease, the illness that became the singular focus of his career.
Suddenly, from the back of the Boston University meeting room, a man in a blazer and scarf jumped from his seat.
“Allen Steere’s papers killed my sister!’’ Timothy Grey shouted as some 60 stunned attendees at the January dinner talk watched nervously. “She died and you have her blood on your hands.’
It was happening again. Steere recognized Grey, a 44-year-old Michigan filmmaker who had been harassing him for several years. Grey is part of the “counterculture,’’ Steere told the audience, raising his normally soft voice to be heard over the intruder.
‘We are the clinicians responsible for seeing these patients year after year.’ — Dr. Robert Bransfield, New Jersey psychiatrist
Two men began herding Grey to the door. “You are a monster,” he declared.
Nearly 40 years after Steere discovered Lyme, Grey’s outburst highlights the rising anger and activism of patient groups that are hugely dissatisfied and mistrustful of the medical establishment’s response.
As the disease continues to spread across the Northeast, the most basic questions remain mired in polarizing controversy: Who has the disease? Why do some people remain sick after treatment? And how should they be cared for?
It’s a debate with significance far beyond Lyme, reflecting gaping differences in how segments of the medical world and the public cope with scientific uncertainty. The battle lines have been drawn for years, but as the number of altered lives rises, the Lyme divide is widening.
Steere, as the nation’s most prominent Lyme researcher and advocate for a cautious, science-based approach to diagnosing and treating Lyme patients, has become an iconic villain for many patients.
In 1975, a young Steere began investigating a cluster of children in Lyme, Conn., with arthritis, a rare diagnosis at that age. Today, Lyme disease, often transmitted by a deer tick no bigger than a poppy seed, is the second most commonly reported infectious disease in New England, second only to chlamydia.
Massachusetts is an epicenter for the illness. Lyme patients reside in every part of the state and 15,000 to 30,000 people here will likely get the disease this year when a tick crawls on them to stealthily feed on their blood, usually in the spring and summer. They could also get four other — though less prevalent — diseases the parasite delivers, including one just discovered in the Northeast.
Lyme and ticks, however, appear to be a low priority for public health authorities. More than $10 million is spent each year in Massachusetts to control mosquitos that spread occasionally fatal West Nile virus and Eastern equine encephalitis.
Tick-borne diseases receive only about $60,000 annually in state funding and a fraction of the attention, though Lyme makes many more people miserable for weeks on end with flu-like symptoms and fatigue. Patients who go untreated have reported facial paralysis, arthritis, heart blockage, extreme fatigue, mental decline, irritability, depression, and other problems, although very rarely death.
STEVE HAINES FOR THE GLOBE
Scott Caseau received his intravenous antibiotics at Cape Cod Hospital.
Grey’s pursuit of Steere represents a boiling over of patient frustration after a generation of controversy about the disease.
The 70-year-old doctor has come to conclude that Lyme — which lacks a sure-fire diagnostic test — can be a catchall label for vague and wide-ranging health complaints. For those who truly have it, Steere says, a month or less of antibiotics almost always will rid the body of infection, although up to three months may be needed to treat Lyme arthritis, a later-stage symptom of the disease.
This is largely the consensus among infectious-diseases specialists, but thousands of patients and some doctors say Lyme is far more prevalent and that the infection can persist in the body even after being treated agressively with antibiotics. One of the ways this chronic form of Lyme can be managed or cured, many of them say, is for patients to take more antibiotics for longer periods of time.
Insurance companies, citing the mainstream doctors’ conclusions, often refuse to pay for this medicine that can regularly cost more than $5,000 a month. A heartbroken and angry Grey is convinced that his sister Lori Hall-Steele’s 2008 death came in part from doctors denying her antibiotics for Lyme.
Physicians can be dismissive toward patients who believe they have chronic Lyme because their claims cannot be proven, and some are outright disrespectful. A National Institutes of Health Lyme program officer referred to Lyme advocates as “Lyme Loonies” in a 2007 e-mail to a colleague that a documentary filmmaker obtained through the Freedom of Information Act.
Some doctors that diagnose chronic Lyme and treat these patients have been investigated and sanctioned by state medical boards. The issue is so politically charged, doctors rarely advertise they treat chronic Lyme. Patients find them through word of mouth or through an Internet-based system that they must register for to receive physicians’ names.
Now, Lyme advocates are bypassing the medical establishment altogether: Doctors who have treated hundreds of chronically ill patients have created their own medical association and are holding scientific conferences, while activists are convincing politicians to pass laws to protect doctors and force insurance companies to pay for medicine. One such bill is pending before the Massachusetts Legislature.
This bitter distrust between the medical establishment and some patients reflects a broader trend in health care. For generations, doctors treated sick patients with no absolute diagnosis by spending time with them and easing symptoms. But in today’s cost-cutting health care landscape, physicians are pressed for time and an increasing emphasis is placed on testing to reach a definitive diagnosis. Without one, there is often little treatment for patients, no reimbursement for doctors.
Frustrated at having no explanation for patients’ suffering, some doctors push them toward psychiatrists, both patients and doctors say. Shunned, patients hunt answers elsewhere. In the end, the public and even many doctors on the front line are left with questions.
“It’s a very confusing illness for physicians and patients,’’ said Dr. Laurel Miller, infectious disease medical director of Cape Cod Healthcare, which runs Cape Cod and Falmouth hospitals, where at least one doctor treats chronic Lyme while others do not. “There is a lot of anxiety.”
From the top floor of a Massachusetts General Hospital research lab in Charlestown, Steere is in the crosshairs.
“I never imagined that this might happen,’’ he said.
Swollen knees in paradise
Polly Murray was worried. The 42-year-old Connecticut artist’s family had been plagued by relapsing health problems for years. A fastidious record-keeper, she had documented her four children’s rashes, flu-like illnesses, swollen knees, and other symptoms, as well as her own. And she knew other children and adults in their woodsy, idyllic town of Lyme who complained of the same symptoms.
Dr. Allen Steere, a Massachusetts General Hospital rheumatologist, has become an iconic villain for many patients.
By 1975, one son, Todd, had been diagnosed with juvenile rheumatoid arthritis and another, Alex, was being treated for severe knee swelling, stiffness, and pain that doctors said was from some sort of trauma. After being told repeatedly by physicians that her children’s maladies were unrelated, Murray, nonetheless called the state health agency to investigate. Another mother in town did the same.
The orthopedic doctor caring for Murray’s family was outraged. Afterward, recalled Todd Murray, now a doctor himself, “the tears were streaming down her face at the hostility and injustice she had faced.”
Those calls helped lead Murray to Steere, then a 32-year-old rheumatology fellow at Yale University.
A gifted violinist, Steere had studied at the elite Juilliard School and played in a string quartet with rising star Itzhak Perlman at a summer camp in upstate New York when they were both in their teens. (A friendship would later rekindle when Perlman’s daughter came down with rheumatoid arthritis.)
An uncontrollable finger spasm forced Steere to put down the violin, but he attacked medicine with the same quiet determination he did music. With his gentlemanly demeanor and musician’s soul, “he was the first one who really listened,’’ said Alex Murray, now a wine specialist who works at Legal Sea Foods corporate headquarters in South Boston.
As the investigation took shape, Steere and his colleagues honed in on children. That so many had the usually rare diagnosis of arthritis suggested a common cause. Valuable leads came in through school nurses, area doctors, and other public health officials. Steere ultimately found 39 children in three communities with inflammatory arthritis; some of their parents had it too.
Many lived in forested neighborhoods. Almost all got sick in the summer and early fall. Some reported a rash, much like those known in Europe from tick bites, before coming down with symptoms. Yet none of the patients tested positive for any known tick-borne disease.
Steere published the first paper on a new disease in 1977, calling it Lyme arthritis. Crawling ticks seemed the likely culprit. He suspected they spread a virus, but attention soon focused on a bacteria. In 1982 the culprit was found: corkscrew-shaped microbes known as spirochetes were identified in the ticks’ gut.
Ticks get Lyme by feeding as larvae on white-footed mice, birds or other animals that carry the bacteria. After molting, poppy-seed sized nymphs wait on tall grasses or in leaf litter in the spring and summer to grasp hold of a person, deer or other passing animal for their next blood meal. The Lyme bacteria, or the four other pathogens, can be transmitted as they feed. The many mobile animals ticks latch onto help spread the parasite.
Lyme disease’s history is long and it likely existed throughout the northeastern United States at one time. As colonists cut down trees for farmland and as deer were hunted, deer ticks were likely driven to isolated wooded regions such as upper Michigan and Long Island, according to Durland Fish, a Yale epidemiologist and ecologist.
Trees began to grow back as farms were abandoned. Deer populations began rebounding and suburbia was carved into the young forest, ultimately bringing people into close contact with the Lyme-carrying ticks — in backyards, along the edges of soccer fields, hidden in the soft fur of dogs and cats.
By the mid-1980s, Lyme’s broad array of symptoms, which mirrored so many other diseases, grabbed headlines. Steere, who was quickly becoming one of the world’s premiere Lyme researchers (he has published over 300 scholarly papers on the disease), was inundated with calls and visits from patients.
Some of the patients he carefully examined clearly had Lyme, reflecting the growing spread of the disease. But many came in convinced they had Lyme although they had never tested positive and did not have classic symptoms. Other doctors were seeing the same trend.
Steere watched it all with a growing sense of unease.
Uncertainty and ambiguity
Twice a day, seven days a week, a heavy-duty course of intravenous antibiotics flows into Scott “Scoot” Caseau’s arm at Cape Cod Hospital in Hyannis.
STEVE HAINES FOR THE GLOBE
Scott “Scoot” Caseau is a Harley-Davidson devotee who has suffered from debilitating headaches, fatigue, and joint pain for more than 15 years.
“This is the only thing that makes me feel better,” said Caseau, a burly Harley-Davidson devotee who has suffered from debilitating headaches, fatigue, and joint pain for more than 15 years. After tests for diseases from AIDS to Lyme came up negative, Caseau found what patients call a “Lyme literate” doctor. His blood was sent to a lab that interprets Lyme tests more liberally than what the US Centers for Disease Control and Prevention recommends. The lab said he had Lyme, along with other tick-borne diseases.
Lyme disease can be difficult to identify and doctors use both symptoms and tests to diagnose the disease. A common early calling card — a bull’s-eye rash around the bite — does not occur in everyone; while others don’t notice it. Tests are indirect, looking for antibodies the body produces to fight the infection, not the bacteria itself. A person who has early Lyme might not have begun producing antibodies yet. Conversely, after the infection is long gone, antibodies may persist in the blood, resulting in a positive test.
Steere helped develop diagnostic and treatment guidelines for doctors through the Infectious Disease Society of America, one of the country’s largest medical associations, and most hospitals and doctors rely on these standards.
While up to 25 percent of treated Lyme patients may still feel unwell after treatment, he says that there is no evidence it is from an active infection and that most feel better within weeks or months without more treatment. To continue to prescribe antibiotics for many more months or years, he says, is unnecessary and could do more harm to the patient than good.
Lyme advocates say the medical group’s guidelines present a too-simplistic picture of Lyme, missing thousands of patients and cutting others off from a cure. They say Lyme can last years, decades even, and point to long lists of patients who have gotten better from continued use of antibiotics. Many want the infectious-disease association to rewrite the guidelines to allow treatment to be guided by the clinical presentation of individual patients, which can greatly vary.
“Lyme is the only thing I have ever tested positive for,’’ a matter-of-fact Caseau said recently in the kitchen of his neat, Hyannis ranch home. He has been on intravenous antibiotics on and off for about eight years, one time for 2½ years straight.
Caseau, on disability because of Lyme, is one of the lucky ones: His current antibiotics, which cost $800 a day, are covered by the federal Medicare program and private insurance.
Caseau is the sort of patient Steere and his colleagues were concerned about when they published a paper in 1993 saying that Lyme was becoming a diagnosis for a variety of other poorly understood medical conditions, such as chronic fatigue syndrome and fibromyalgia. Lyme, they concluded, was often overdiagnosed.
Many Lyme patients were outraged and hurt: Not only were they told they were not sick with Lyme by the man who had discovered it, the paper’s conclusions seemed to dismiss many of them. Activists, already angry at him, began showing up at more talks he gave; bodyguards were hired for a time to protect him.
Meanwhile, the growing open-ended use of antibiotics to treat patients diagnosed with Lyme was drawing scrutiny from the medical establishment despite patients’ — and some doctors’ — insistence that the drugs cured the disease or made patients feel better. Today, that use of antibiotics continues to be one of the most controversial aspects of the “Lyme Wars”, as some doctors and patients call it.
In the early 1990s, the CDC published a cautionary study of 14 children who had to have their gallbladders removed and 22 suffering bloodstream infections because of long use of IV antibiotics for Lyme.
State medical boards began launching investigations of doctors who treated patients for chronic Lyme, including Caseau’s current physician, a psychiatrist named Bernard Raxlen. Charges that he improperly diagnosed and treated Lyme patients were dismissed in Connecticut, although he was reprimanded on lesser charges for failing to turn over patient records. Raxlen, now based in Manhattan, says he has been found guilty of mistreating a patient and is committed to helping people with tick-borne diseases.
Health plans, listening to the Infectious Disease Society of America, limited coverage of antibiotics. Lyme support groups are rife with patient stories of mortgaged homes and sold cars to afford long-term treatment.
Less than a decade after Connecticut Governor John Rowland declared Allen Steere day in 1998 to thank him for his contributions to understanding Lyme, the state’s attorney general launched an investigation into the infectious-disease society’s guidelines and the people who developed them, which included Steere. In a settlement, both sides agreed to have an impartial panel review the medical group’s guidelines, and it upheld them.
But that didn’t settle matters — the sides had too much contempt for each other.
The Lyme advocates had already embarked on a new strategy: Ignore Steere’s world altogether.
A parallel world
Almost 400 miles from Steere’s office, about 150 doctors, nurses, and health care workers crammed into a small conference room in Hershey, Pa. The April meeting was the first US regional conference of the International Lyme and Associated Diseases Society, a medical group of doctors and health professionals created in part to counter the Infectious Disease Society of America. The event was so popular that organizers had to turn away 50 people.
SUZANNE KREITER/GLOBE STAFF
At a State House rally, Michele Miller (center) said her mother, Jeanne Cloutier, died of Lyme disease. Writer and blogger Jennifer Crystal (left) and Sarah Albanesi, of state Senator Bruce E. Tarr’s office, also attended the rally.
Doctors and researchers spoke in rapid succession about the best protocols for antibiotics, supplements and other treatments for chronic Lyme. Many were circumspect and scientifically cautious, but others spoke more freely, closely linking Lyme to a host of other ailments. Exhibitors in an adjacent hall advertised nutritional supplements and Lyme testing companies.
“We have a different conceptual belief system’’ than research scientists, said Dr. Robert Bransfield, a New Jersey psychiatrist and former ILADS president who researches links between suicide, depression, and Lyme and who was one of the speakers at the meeting. “We adhere to a broader definition of Lyme disease” borne out of years of experience treating patients. “We are the clinicians responsible for seeing these patients year after year.”
Lyme patients and advocates say they just want answers. Frustrated with a lack of government research into persistent infection, they have begun to fund such work themselves.
The Stamford, Conn.-based Lyme Research Alliance has raised more than $6 million in the last 10 years to fund research, including most of the funding to endow Columbia University’s Medical Center Lyme and Tick-Borne Diseases Research Center. Another Lyme group, the Tick-Borne Disease Alliance has partnered with the XPrize Foundation to encourage research into a better diagnostic test for Lyme.
A few members of the medical establishment have “trashed our patients and organizations,’’ said Pat Smith, president of the Lyme Disease Association, a large national group that works on education, research, and patient support. “Those patients and organizations have come together to provide the resources, research, education, and advocacy required to overcome [these] negative images.”
Politically, the adovocates are also gaining ground. Massachusetts, Rhode Island, New Hampshire, and Connecticut have passed laws in recent years to protect doctors from being disciplined by medical boards for continued use of antibiotics for chronic Lyme; other Lyme activist laws have been passed around the country. A bill is now pending in Massachusetts to require insurers to pay for those antibiotics. Its prospects are not clear, although a bill was passed in recent years to protect doctors prescribing longer term antibiotics.
Doctors on the front lines — and the public — are often left confused by the polarized debate and lack of a surefire diagnostic test.
On Martha’s Vineyard, a hotspot for the disease, health care workers met last month to come up with a unified approach to dealing with patients who may be in the early stages of the disease. Those in attendance suggested treating people with antibiotics as a precaution, rather than waiting to see if other symptoms develop.
So controversial is the subject of chronic Lyme, 11 out of 15 community doctors on Cape Cod and Greater Boston who were contacted by the Globe refused to speak publicly about the disease, or did not return calls or e-mails.
Mad at establishment
The last words Timothy Grey says his 43-year-old sister uttered were aimed at the medical world that denied her antibiotics: Make them pay, she said, accompanied by an obscenity.
Grey spends much of his time trying to do so. He filmed a 2009 documentary on his sister’s death, which her doctors attributed to ALS.
Called “Under the Eightball,” it blames the medical establishment for deliberately downplaying the dangers of Lyme, in addition to accusing the government of developing Lyme as biowarfare.
He interrupted Steere once in 2009 while he was with a patient. A friend filmed the exchange, and it was posted on You Tube. Later, Grey confronted Steere again, in a Massachusetts General cafeteria. Steere called security and Grey left.
“This is what activists do,’’ said Grey, from his Michigan home. Others in the Lyme advocacy community distance themselves greatly from Grey, saying his confrontational tactics do not help their cause. Still, many are deeply upset with Steere and a handful of other doctors they view as key gatekeepers to getting federal research money to study persistent infection and other aspects of Lyme.
Steere says he is embarrassed by Grey’s attacks, and appears at times pained by activists’ harsh portrayal of him as a villain on numerous websites. “What I think is considerably nuanced,” Steere said during an interview in his small office, with orderly piles of research papers stacked on his desk. “I don’t think that [patients’ sickness] is all in their head.”
After Grey was escorted from the Boston Unversity room that January night, Steere paused. “Lyme disease has been a difficult journey,’’ he told the audience. “[This] gives you more of a feel of what it is like to work on Lyme disease.”
And then he continued with his talk in a calm, measured voice.
Correction: Dr. Laurel Miller’s job title was described incorrectly in an earlier version of this article.