Salvos launched in Lyme debate
The rise of the tick-borne disease in Virginia has created a political and medical divide
By Beth Macy | 981-3435
Her husband called her The Tiger. Their colleagues did too.
Taylor Albright was such a fierce lawyer that she once negotiated a land-dispute settlement from $12,000 down to $200 — and she’d had the gall to try for $5.
At the Manhattan law firm where she landed after law school, she wore European designer suits. Her favorite was the brass-buttoned Burberry from London; same tailor as the Queen.
But the suits seemed too flashy for bucolic Blacksburg, where she and her lawyer husband, Victor Bongard, moved in 1999 to be closer to family and where, on nice days, she rode her Harley to work.
It was 2006, the height of the real-estate boom, and the couple were so busy with their practice and title agency — and raising three kids — that frequently they took turns working through the night.
To house their expanding firm, they bought 4.5 acres on the edge of Blacksburg between farmland and commercial property. The development would be green, she told a reporter, something that would “achieve the triple bottom line — environmental stewardship, social responsibility and economic prosperity.”
But two weeks before the scheduled groundbreaking, The Tiger lost her bite.
Forget the Harley. Try as she might, Taylor could not get out of bed.
For 12 days she was hospitalized with life-threatening blood clots in her lungs. Doctors had initially blamed her pain on stress, but when the X-ray confirmed pulmonary emboli, Taylor was sure the sickness was related to the fatigue, joint pain and tremors she’d experienced off and on for years.
She remembered being so tired in her 43rd-story Park Avenue office a decade earlier that she sometimes hid under her desk to nap. Only her secretary knew.
She never suspected she would come to blame her illness on the black-legged tick — Ixodes scapularis — commonly called the deer tick. In its nymphal and most dangerous stage, it’s no bigger than the period at the end of this sentence.
She certainly didn’t envision being caught in the crossfire of a fight working its way into statehouses, boards of medicine and doctors’ offices across the country.
Allegations are fierce: To mainstream doctors, Taylor has a fictional disease, and the doctors treating her are charlatans who should have their licenses revoked. But to the outlier doctors willing to treat such patients, the mainstream physicians are arrogantly putting incomplete science — and their own reputations — ahead of patient health.
Taylor delved into the controversy last year around the same time the Virginia General Assembly got its first look at three of the most contentious words in medicine: chronic Lyme disease.
Capitol Square had rarely seen anything like it: More than 125 chronic Lyme advocates traveled to Richmond to lobby for a bill that would protect doctors who go outside professional guidelines to prescribe long-term antibiotics for treatment. The bill was ultimately shelved, but the size of the crowd, the placards, the fevered exchanges — seasoned observers said only the abortion issue yielded that much emotion.
All this for a tick-borne disease?
As the nymphal ticks emerged from dormancy in late spring 2010, the Virginia Department of Health sent a mass letter to doctors urging them to be vigilant in their treatment and reporting of Lyme. In a June news conference, word filtered down to hikers and suburban gardeners: Lyme disease has seeped into Southwest Virginia, up 500 percent in Montgomery County alone from 2007 to 2008.
It was already a charged issue in Northern Virginia and Tidewater, where most of the state’s 1,000 cases were reported this year and where suburbanites worried about exploding deer populations have filled community centers and meeting halls. Statewide, reports of Lyme in Virginia have nearly quadrupled in the past five years.
But a record 65 new cases have been documented this year in the Roanoke region — a place where only a handful was reported just four years ago. More troubling, experts concede that incidence of Lyme is woefully under-reported and can be as much as 10 times higher than the numbers indicate.
In October, Gov. Bob McDonnell entered the fray, creating the state’s first Lyme Disease Task Force to analyze the diagnosis, treatment and education among doctors and the public at large.
“This disease can cause severe illness in humans,” warned a news release announcing the task force. “If untreated or not properly treated, some patients may develop arthritis, neurological problems, and/or heart problems.”
Infectious disease experts in Roanoke claimed the governor’s move was prompted by politics, not science.
“I think chronic Lyme seems to be an idea that’s infectious,” said Dr. Stephanie Nagy-Agren of the Veterans Affairs Medical Center in Salem.
Back in 2006, Taylor knew nothing about the Lyme wars raging in the Northeast. She knew only that she was very, very sick.
She revised her will, mothballed her Armani and trained her co-workers to do her job. She asked her mom if she would choose a nanny to help Victor raise the kids when the time came.
Her relatives didn’t want to discuss it, but with her shrewd legal eye, The Tiger weighed the evidence in her case — the debilitating fatigue, the recurring blood clots, the fact that one in three people with pulmonary emboli don’t survive — and found it incontrovertible.
“I think I’m going to die,” she said. She was 41 years old.
Taylor had physical proof that her mystery malaise wasn’t all in her head. But it would be three more years before doctors thought to test her for Lyme.
And why would they? She was living in the New River Valley, where health officials counted just one case of Lyme in 2006.
But does she have chronic Lyme disease now? Is the enemy truly the Lyme-carrying bacteria, a tiny wormlike spirochete named Borrelia burgdorferi?
Those questions have incited blood-boiling arguments since the discovery of the disease in Lyme, Conn., in 1975. It has pitted doctor against doctor, and doctor against patient, in a debate that has muddied the usual boundaries of medicine, science and politics. Conspiracy theories abound on both sides.
“I don’t remember any other disease in recent history that’s caused such an uproar, with the stakes so high on both sides,” medical anthropologist Mark Macauda says. “And they are nowhere close to reaching common ground.”
About the only thing they agree on is the existence of acute Lyme disease, a short-lived infection similar to a summer flu. Symptoms, usually appearing between three and 30 days, can vary widely but typically involve joint pain, fevers and a telltale erythema migrans, or bulls-eye rash.
If caught in the acute stage, Lyme is easily eradicated with a short course of doxycycline — a common antibiotic used in the treatment of acne.
But from there the two camps diverge:
Most doctors, citing guidelines issued by the Infectious Diseases Society of America, believe nearly all cases of Lyme are acute, with the exception of a very small number of patients who have post-Lyme inflammatory illness. They take the position that chronic Lyme disease doesn’t exist; that short-term antibiotics decimate the spirochetes in all but the rarest of cases.
Ask them about the debate, and they’re likely to hand you copies of The New England Journal of Medicine, talk about “evidence-based medicine” and say the crux of chronic Lyme isn’t Borrelia but rather the vagaries and vicissitudes of middle-aged, middle-class life.
“Why should politics be dictating care?” Nagy-Agren says. “I never had a lawyer teach me in medical school, or a politician teach me how to care for a patient.”
But Lyme patients and what they call their “Lyme-literate” doctors spin a different narrative based on evidence of their own. They point to a high rate of false negatives on the two-tiered Lyme test, and the fact that it takes up to a month for the confirmatory antibodies to appear — complications that can lead to delayed treatment or none at all. They cite Centers for Disease Control and Prevention figures stating that 20 percent to 30 percent of cases don’t present with the telltale rash.
Left untreated in the initial days and weeks, an acute case of Lyme can develop into a crippling, chronic version of the disease that attacks the body and the brain, they believe.
Ask them about the debate, and the response is equally charged. They liken the naysayers to those who first labeled multiple sclerosis the “faker’s disease” — people who called the science wrong, leaving history to tell the tale.
“I think when people in the medical community don’t know the answer, they tend to brush the question aside,” says Roanoker Karen Fralin, who has been treated twice for Lyme in the past six years.
When she first turned up at her doctor’s office in 2004 with Lyme symptoms and a tick sample in hand, he threw the bag away, telling her, “We don’t have Lyme in Virginia,” she says.
But Fralin, the 46-year-old wife of former delegate William Fralin and a strong-minded woman in her own right, didn’t blindly accept her doctor’s opinion. She knew about the controversy and had several friends and a relative who’d sought aggressive treatment outside Roanoke.
When her symptoms worsened, she went to a Washington, D.C., doctor who treated her with three 30-day courses of the antibiotic doxycycline — well beyond what the infectious disease experts recommend. According to Lyme doctors: The longer a Lyme infection is allowed to flourish untreated, the more resistant to antibiotics the Borrelia becomes, necessitating longer regimens.
Fralin began to get better after several months, though she says she still has intermittent joint pain and fatigue.
When friends describe having prolonged Lyme symptoms, she advises them to circumvent local doctors and go out-of-state, too.
Such is the not-quite-underground network of middle- and upper-middle class people in the Roanoke area who travel as far away as New York and New Jersey for treatment of what they believe to be chronic Lyme, much of it not covered by insurance: a Presbyterian minister, a Hollins University professor, a Floyd factory owner, a James Madison Middle School student so sick he had to be home-schooled.
In October, a 47-year-old former emergency-room secretary died of complications her family believes stemmed from chronic Lyme. Johnette Sowder of Back Creek in Roanoke County had been seeing a controversial Lyme doctor since 2003 and had been improving in recent months before her unexpected death.
Fralin believes some local doctors are finally adopting a better-safe-than-sorry approach, even at the risk of overtreating. This year, when she returned to her family doctor exhibiting signs of a second tick bite she’d gotten in her wooded South Roanoke yard — swollen glands and joint pain, but no rash — she was treated immediately for 30 days.
Roanoke County lawyer Matt O’Herron, 39, had a similar experience last summer after rushing to the emergency room with a fever of 106. He’d been cleaning brush in his back yard but saw no evidence of a tick bite until days later, when he noticed a purple welt on his leg.
Instead of waiting for test confirmation, his doctor immediately prescribed a three-week course of antibiotics.
“I couldn’t have gotten any luckier,” he says of his full recovery. “I’ve heard horror stories from friends in Northern Virginia who weren’t so lucky.”
Either their cases weren’t detected early, when short-term antibiotics are deemed effective, or they weren’t treated long enough. CDC guidelines call for a regimen of 14 to 28 days, with allowances for a second, 28-day course if conditions don’t improve.
But in newly endemic areas such as Western Virginia, according to patients and doctors alike, treatment standards seem to be all over the place.
“I wish I could help you with a standard practice, but I am not sure there is one being used regularly,” said a Roanoke pediatrician, who asked not to be named for fear of alienating colleagues.
This much is certain: There is a gaping disconnect between scientific research and the experiences of people on the ground. Among the 420 New Englanders whom anthropologist Macauda interviewed for his 2007 dissertation on chronic Lyme, 80 percent of the interviewees believed in the disease.
Of the doctors he interviewed? Just 20 percent.
“With newer diseases, it takes a while for public health to catch up,” said Macauda, now a University of South Carolina researcher. “The establishment may say no initially, but if more evidence comes up over time, the model can change.”
Macauda says the medical establishment wisely argues against antibiotic overuse because it fosters drug-resistant infections. Nearly 30,000 Americans die annually from infections of drug-resistant bacteria spread through hospitals and nursing homes.
But he’s equally convinced that chronically ill patients aren’t malingerers whose illness is “all in their heads,” as many doctors allege — “Doxycycline Deficiency Syndrome,” they call it, dismissively.
Connecticut, Rhode Island, California and Massachusetts have gone so far as to pass legislation protecting doctors who prescribe long-term antibiotics after the sanctioning of 30 doctors, several of whom lost their licenses.
In Virginia, the political battle is just beginning, with Del. Tom Rust, R-Fairfax County, planning to revive his doctor-protection bill in the upcoming session. Two doctors have been investigated by the Virginia Board of Medicine for overtreating Lyme in recent years, including a 73-year-old Eastern Shore doctor who shuttered his practice in September after being put on probation and permanently banned from prescribing narcotics. The other doctor, based in Northern Virginia, was cleared of wrongdoing in 2005.
“I have people coming to me saying their dog can get better treatment than they can,” Rust says. The two Northern Virginia counties he represents reported a combined 436 cases of Lyme last year, nearly half the state’s total. “But I have to convince the medical community that I’m not out here giving a blank check to any doctor who wants to commit malpractice.”
The controversy has had a chilling effect on doctors, and some patients claim to have fallen through the cracks as a result.
For 44-year-old pet groomer Mauricia Shanks, her descent into the land of Lyme began in July 2009 when she discovered an engorged tick in the bend of her leg. She pulled it off and threw it in the yard of her Pearisburg shop. Three days later, she awoke to a fever so raging that it took a double dose of Tylenol and Motrin to get her out of bed.
At the emergency room, staffers blamed it on a virus and sent her home. By the time her family doctor saw her a week later, she’d developed a rash. The doctor diagnosed Lyme immediately and prescribed three weeks of doxycycline, Shanks says.
But by Labor Day, her symptoms were back — times 10. Her fingers stiffened and curled involuntarily. Every joint in her body ached. It was hard to wake up, hard to think straight. “It was almost like my thoughts were arguing with each other,” she says.
Her Lyme test came back resoundingly positive. Rather than consult the CDC’s guidelines for subsequent treatment, Shanks says her doctor told her: “As we expected, sweetheart, you’ve got Lyme — but you’ve already been adequately treated.”
Shanks had never heard of Erin Brockovich, but over the next nine months, her story paralleled that of the feisty environmental activist. She fought repeatedly for treatment, and then fought for her case to be counted by public health officials.
She became the first reported case of Lyme in Giles County, but only because the Northern Virginia doctor she finally coaxed into treating her — with nine months of oral antibiotics — reported the case. Despite Virginia Department of Health guidelines requiring doctors to report Lyme, area health care providers concede there is confusion over whose job that is.
Emergency room director Dr. Robert Dowling of LewisGale Medical Center in Salem knows it isn’t his. “The reasonable thing to do is to have the lab that runs the test make the report,” he says.
But what happens to suspected cases that are treated preventively, without test confirmation? Those don’t fit the CDC surveillance criteria and therefore aren’t counted.
Salem infectious disease specialist Muddasar Chaudry treats 25 to 30 new Lyme cases a year. And yet most of his patients were not counted last year. He says it’s not his job to report them; it’s the primary care doctor’s.
The state health department counted just one confirmed case of Lyme in Roanoke County in 2009, and zero in Roanoke and Salem. So far this year, Roanoke has reported two confirmed cases in the region; Roanoke County, four.
But Montgomery County reported 23 — a jump possibly owing to terrain, with the New River Valley comprising more newer developments where deer and humans converge. It may also be related to increased physician education on Lyme led by Dr. Jody Hershey, director of the New River Health District.
“You’re definitely on the cusp [of increased Lyme numbers in Virginia] … and I know we can do a better job of educating physicians” to diagnose, report and treat Lyme, CDC Lyme spokesman Dr. Kevin Griffith said.
Shanks and other advocates contend that the low numbers undermine public health by giving hunters, hikers and gardeners a false sense of security.
“It infuriates me so bad because if these doctors would report the Lyme they’re seeing, then Richmond would realize we’ve got a problem here in Western Virginia and people would take notice,” she says.
For her part, Shanks passes out Lyme disease fliers to all who enter her grooming shop. She’s starting a regional support network under the umbrella of the McLean, Va.-based National Capitol Lyme and Tick-Borne Disease Association, the group that organized support for Rust’s bill.
Like Fralin and others, Shanks has become a beacon to people newly diagnosed with Lyme, helping them tap into a network of out-of-town doctors. She has regular telephone debates with the state health department’s top entomologist, David Gaines, over the reality of chronic Lyme.
She tells him: “There are certain things that science is just wrong about, and why people won’t even entertain the fact that this disease can cripple you is beyond me.”
Gaines’ take echoes the mainstream medical community’s: “A lot of people are suffering from arthritic or neurological symptoms; they have something. But I can’t say it’s Lyme disease.”
‘On death’s door’
The Tiger didn’t have a beacon like Fralin or Shanks to guide her. She was too enmeshed in her work most of the time to even look for one.
At Duke University Law School and earlier in her career, she endured periodic bouts of pain and fatigue. In between, she was tired at best, blaming herself for her “lesser constitution” and digging her heels in harder at work.
At her worst, she had body tremors and trouble remembering things — like to turn off a boiling pot on the stove. In her 30s and early 40s, she sought out experts at the Mayo Clinic and Duke. Among the various diagnoses: depression, arthritis, an autoimmune disorder and severe B-12 deficiency.
But no one mentioned Lyme, and Taylor didn’t consider it, either, thinking that fevers were a required symptom.
She laughs when she describes how, after 18 years of trying to unravel her medical mystery, she finally deduced what it was: Her mother-in-law plays bridge with a woman whose daughter-in-law had Lyme, and after hearing about Taylor’s eerily similar symptoms suggested that she get tested for it, too.
In late 2009, she found Dr. Richard Horowitz, a Hyde Park, N.Y., internist who’s treated some 11,000 Lyme patients in 20 years. Her test results indicated “classic, undiagnosed chronic Lyme,” he told her.
Though rarely traced to Lyme, her blood clots were simply Borrelia’s latest, harshest salvo, he said. Lyme’s attack on her central nervous system was also responsible for her worsening incontinence, a result of misfiring signals between her bladder and her brain.
“She was gray, couldn’t get out of bed most days,” her husband says. “She seemed to be on death’s door.”
They were about to embark on one of the most controversial treatments in medicine, one that would try their marriage, cripple their business and nearly bankrupt their family.
And before she got better, the doctor warned, Taylor was likely to get worse.
But there was no room for negotiation. If she wanted to live, The Tiger decided, it was time to rise up and fight.
This story is the first in a three-part series on Lyme disease. It first ran in The Roanoke Times on Sunday, Dec. 19, 2010.