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December 30, 2010 | Categories: Featured, Lyme Disease | 17 Comments »

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.

Dueling narratives

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.

Research gap

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.

-30-

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.

December 21, 2010 | Categories: Featured, Lyme Disease | 52 Comments »

In search of hope, facts

The burden of Taylor Albright’s longtime physical and mental ailments
has chipped away at her livelihood and her family’s finances.

By Beth Macy | 981-3435

Her day no longer revolves around legal contracts and land deals.

Taylor Albright had been such a fierce negotiator that her colleagues nicknamed her The Tiger. But now the 45-year-old lawyer finds it a challenge to get her three children to soccer practice and order pizza on the phone.

Some days she has enough energy to do both, but often she can do only one — and it takes an iPhone alarm to prompt her.

She’s set her phone to quack, like a mama duck calling her ducklings, when it’s time to pick the kids up from their Blacksburg school. When she forgets a phrase or can’t finish a sentence, her children joke that she’s speaking “Mommish.”

It’s a language that even she doesn’t always understand. Once she referred to herself as Tammy. Another time she caught herself misspelling her son Griffin’s name.

The crushing tiredness and arthritic joint pain, the neurological complications that cloud her ability to think, the life-threatening blood clots and debilitating incontinence — Taylor and her doctor believe they are all manifestations of the chronic Lyme disease she’s had for more than 25 years.

But the illness is fast becoming medicine’s third rail. It’s not recognized by the Infectious Diseases Society of America, which says there’s no evidence to prove it exists.

Taylor and other patients may have something wrong with them, the medical establishment argues. But whatever it is, it’s not chronic Lyme, and it certainly shouldn’t be treated with long-term antibiotics, which not only doesn’t help people, those doctors contend, it can hurt them — and the public at large.

Taylor has read the IDSA arguments with her typical due diligence. Even on bad days, she knows the guidelines word for word.

Nonetheless, she was relieved in December 2009 when her New York Lyme specialist, Dr. Richard Horowitz, suggested she defy the establishment credo and undertake the most controversial treatment of all: prolonged intravenous antibiotics, self-administered through a catheter in her chest.

The treatment would take four to six hours a day, and complications could occur. At a cost of almost $60,000 a year, very little of it covered by insurance, it could bankrupt the family.
Yet for the first time in 25 years, The Tiger finally felt a thread — albeit a precarious one — of hope. Whatever was crippling her, maybe this would put a stop to it.

‘Convergence disorder’

Taylor was a high school student in southern New Jersey when she got her first tick bite — and shrugged it off. Looking back, she figures it was that nonchalance that did her in. She endured a litany of ailments followed by a litany of specialists, with nobody, not even Taylor, stopping to consider the tick-borne disease.

In her early 20s, a doctor diagnosed her with ankylosing spondylitis, a rare and incurable inflammatory arthritis and autoimmune disorder. If her diagnosis kept her from seeking other explanations for her pain, it was her headstrong denial that kept her from letting it slow her down.

She overcompensated by working harder, longer hours. After the kids came along, she and her law partner-husband, Victor Bongard, bought a couch for her office. What did it matter if she napped between clients since one or both of them would be working through the night anyway?

But the pains grew harder to ignore, especially after a second tick bite at FloydFest in July 2006. She watched the bite site vigilantly for a rash, wrongly thinking it had to be present for Lyme.

By October, her chest and back pain was so severe that Victor rushed her to an urgent care doctor. No tests were performed, and Taylor didn’t think to mention the tick. She was suffering from stress, the doctor decided, and prescribed the sedative Ativan.
Another week passed before her family doctor found blood clots in her lungs and hospitalized her for 12 days.

Over the next two years, her health plummeted. Taylor forgot things, things she should have known — the names of her kids’ teachers, for instance.

Another embolism appeared, this one on her shoulder, and her head and limbs shook. A 2009 visit to the Mayo Clinic ruled out the earlier diagnosis of ankylosing spondylitis, but there was nothing to replace it with other than “convergence disorder.”

A doctor at Mayo suggested that label after Taylor described helping care for her grandmother, who lived nearby, before her death in 2007. Because her tremors mirrored her grandmother’s Parkinson’s-like shakes, he postulated that Taylor was so emotionally bereft that she had taken on her symptoms — 18 months after her grandmother died.

To The Tiger, it was simply another doctor, another version of: “It’s all in your head.”
The visit so traumatized her that she couldn’t talk about it for months — not even, at first, to Victor.

At work, the law firm and title agency the couple had worked so diligently to build was imploding — partly from the recession but mainly because of the absence of Taylor, who had managed every aspect of it.

Today, the firm of Albright & Bongard, which once comprised 13 employees, has downsized from seven attorneys to just two. The couple are mainly living off the proceeds from the sale of their dreamland — the acreage that was supposed to house their companies.

Because of her earlier autoimmune diagnosis, the firm’s application for disability insurance had been rejected, so she receives no benefits.

“My husband’s working like a dog,” she said on a weekday in September. She was lying down to conserve energy so she could drive her 12-year-old, Victoria, to soccer practice in Roanoke later that day. Her omnipresent appendage — a clear plastic bag of liquid antibiotics — ran into her chest through a tube tucked under her T-shirt.

“Not only am I not bringing business in, but I’m the cause of huge expenses,” she said. “It’s horrible.”

Anecdote isn’t data

Viewed through the Lyme controversy prism, The Tiger’s IV treatment — deemed experimental by her insurance company — plunges her squarely into the deep end.

It’s the kind of doctoring that infuriates Dr. Thomas Kerkering, Carilion Clinic’s infectious diseases section chief and a professor at the Virginia Tech Carilion School of Medicine. He’s spent much of the past decade “de-mything” chronic Lyme, which he likens to chronic fatigue syndrome and fibromyalgia before it.

He lumps the three into disease “catch-alls,” faux ailments designed to give a name to the stresses of daily living. “Again, it’s: ‘If I’m not feeling well today, it’s my Lyme disease acting up,’ ” Kerkering says.

“Nobody can prove or disprove that their symptoms are or are not due to [chronic] Lyme disease. … Those of us who stick to the scientific evidence are pilloried.”

His dismissal of chronic Lyme comes at a moment when Carilion is banking its reputation — and its new medical school — on “evidence-based medicine,” the concept of applying the most scientifically sound research to clinical decision-making.

Kerkering built his career at the Medical College of Virginia and East Carolina University before coming to Roanoke two years ago. Along the way, he led medical mission trips to some three dozen Third World countries, winning humanitarian awards. He has battled epidemics in war-torn countries and, closer to home, seen to it that needy HIV/AIDS patients were not turned away.

But he has little patience for the Lyme wars and greets a reporter’s inquiry with: “I’ve been looking forward to this [interview] as much as a root canal.”

LewisGale Medical Center’s infectious disease specialist may report seeing 25 to 30 Lyme cases this year, but Kerkering’s team at Carilion has confirmed just four cases from the region — even though about 50 people have called about suspected Lyme. If the callers don’t pass the two-tiered blood test for Lyme, “We generally don’t see them because we can’t do anything for them,” he says.

It irks him when patients threaten to “ ‘go see my doc in Manhattan’ … because that’s where most of the charlatans are. They’ll do IV antibiotics for two years. Insurance doesn’t cover it, and people are willing to pay thousands of dollars to have a diagnosis,” Kerkering says.

(Taylor says her doctor doesn’t accept insurance because several Lyme doctors have lost their licenses after being sued by insurance companies.)

What’s at the heart of their malaise?

Kerkering does not directly say, “It’s all in their heads.” But in the course of an hourlong interview and in followup e-mails, he contends that the placebo effect is a more powerful influence on health than antibiotics.

“For those people who’ve had a diagnosis of chronic Lyme disease and have been treated with long-term IV antibiotics, there is no evidence of benefit, even though some individuals may feel they have been helped,” he says.

In fact, complications from such treatment have included infected IV lines, gallbladder problems, yeast infections and, in one case, death.

“Lyme-literate” doctors believe that many Lyme cases fall through the cracks of undertreatment — or in Taylor’s case, no treatment at all — spiraling into chronic, hard-to-treat infections. But mainstream physicians insist that a short antibiotic course kills off the spirochetes in all but a very rare number of cases.

If Carilion really wanted to make a fortune, Kerkering adds facetiously, it would open up a chronic Lyme clinic. “We’d be busier than we want — but we’d be taking advantage of patients, sort of like the con man taking advantage of the old people.”
His mantra, a line he likes to shares with other infectious disease doctors in town: “Anecdote squared does not equal data.”

‘Not evil, just wrong’

Kerkering is leery of stories such as the one reported in an October Roanoke Times obituary. Johnette Sowder, a 47-year-old former emergency-room secretary and nursing school student, died Oct. 14, from complications related to chronic Lyme, her family contends.

While the initial autopsy report found her cause of death to be inconclusive, this much is certain: The Back Creek woman had been severely ill and on disability for several years. She was in so much pain that she could no longer feed the birds and other animals on her 90-acre property at the base of Bent Mountain — the place where she was presumably bitten by the tick.

She was hospitalized three times in Roanoke, initially for shortness of breath, chest pains and swelling. Heart problems were initially suspected, but multiple specialists ruled that out, along with several other conditions. At Duke University Medical Center, where she went for a cardiology workup, the intake doctor sent her to the psychiatry department instead.

Her family practice physician, Dr. Marie Malinchak — who had worked with Johnette at the Carilion Roanoke Memorial Hospital emergency room years earlier — eventually tested her for Lyme, with equivocal or inconclusive results, considered negative by most mainstream doctors and insurance companies.

Convinced Lyme was responsible for Johnette’s illness, Malinchak referred her to well-known Lyme physician Dr. Joseph Jemsek in 2003. That was three years before his medical license was suspended for diagnosing and treating chronic Lyme using methods that were outside the “recognized standards,” according to the North Carolina Medical Board.

But Johnette and her husband, Wayne Sowder, saw Jemsek as a savior. When he sent her Lyme test off to a controversial lab in California and it returned with resoundingly positive results, the Sowders were relieved.

“We were naive enough to think that the medical system, now that it knows the problem, can actually fix the problem,” recalls Wayne Sowder, a music sound engineer.

When Jemsek relocated his practice to Washington, D.C., in 2009, Johnette followed him there. For seven years, she took Jemsek-prescribed medications, including a wide range of antibiotics, most of them oral — because her insurance company would only pay for 30 days of IV antibiotics.

“Due to the impediments that were placed in the way of her doctor, we were forced to take half-measures and baby steps, which I believe prolonged Johnette’s recovery,” Wayne Sowder said.

It wasn’t until this past summer that she finally began to feel better. “She had stopped most of her pain meds voluntarily,” he recalls. “She was even thinking of getting back into nursing school.”

But she died moments after collapsing at her father’s house in Knightdale, N.C., after complaining of severe back pain. Family members believe she may have been stricken by a blood clot.

Less than a week after her death, the news of Gov. Bob McDonnell’s Lyme Disease Task Force appointment hit Wayne Sowder in the gut. “I thought, finally, the world’s waking up and she’s not gonna be able to appreciate it. A week before, we would have been high-fiving about that.”

Sowder says he had shielded his wife from the politics of the disease, including what he calls the “tin-foil-hat conspiracy people” who believe insurers, big pharma and politicians are conspiring to line their pockets at the expense of Lyme patients.

“Some people make bad decisions, some companies make bad decisions, and some governments make bad decisions. The problem that Lyme disease suffers from is a convergence of all three,” he says.

“They’re not evil, just wrong.”

Savior or snake oil?

The Tiger is on the couch again — only this time she’s not just lying there; she’s sewing. Her 10-year-old son just passed a karate test, and a new patch must be added to his belt.

Victor is home between clients. A part-time Pulaski County prosecutor, he’s getting ready to meet a domestic violence victim at a shelter on this, a recent fall day.

Where once she was intimately involved with every detail of his work, Taylor concedes: “I had no idea that was even part of his job.” In the beginning it was too painful for her to hear about work, so he got into the habit of telling her nothing at all.

After 11 months on the antibiotics, Taylor has measured small but steady improvements. As of September, her head tremors had subsided, the night sweats were nearly gone. She no longer had involuntary “sewing machine leg” shakes when she walked down the stairs.

Though she figured she was 70 percent better than she was at the height of her illness, she felt worn down by the treatments — the multiple shots and pills, the tube sticking out of her chest — and was considering stopping the IV drugs.

While grateful for the gradual improvement, she shared some of Kerkering’s concerns:

“Have I been taken in by snake-oil salesmen? Am I spending my children’s college money on snake oil? I wonder.”

Her husband disagreed. He saw Taylor improving by the week and believes they have the controversial doctor with his controversial treatment to thank. “If it’s having a positive effect, unlike nothing anyone else did, how can it be wrong?”

In mid-October, Taylor’s improvement had plateaued. Her doctor stopped the IV drugs and upped her oral antibiotics — and almost immediately she began to feel worse: The numbness in her limbs returned, along with the night sweats.

“I’m not going to know if it’s really snake oil till it’s over,” she said in November. “But I’m doubting it [the doctor’s treatment plan] less and less now. I think the fact that I’ve gotten worse confirms the Lyme diagnosis.”

Victor finds the establishment’s take on chronic Lyme both dishonest and intellectually flawed: “Just because you can’t prove something doesn’t mean it isn’t true, and these researchers know that.”

It’s a paradigm problem, he adds. “Their entire life’s work depends upon the paradigm they’ve constructed and built their careers on. It’s threatening to the core of their life’s work that it might be different.”

Still, the disease has nearly bankrupted the family. Their retirement, their kids’ college funds, their investments — without her income, the cushion has collapsed.
It’s driven some friends away, in part because Taylor literally can’t recall who they are. At the Unitarian Universalist church they attend, Victor has been reluctant to share their story.
He’s a lawyer and a part-time prosecutor, after all. He’s supposed to stand up for the little people, not be one of them.

“But I keep thinking, if only people knew. … It’s not just that you’re not getting a paycheck. It’s that you’ve spent all your retirement, and your medical bills are more than you might make in a given year.”

Last spring, Taylor had arranged to sell her beloved Harley-Davidson, a Sportster 1200. Even as a kid she’d loved riding on her dad’s Harley. When she took up riding, it fulfilled her desire for adventure, for challenging the status quo.

She hasn’t been able to ride for years now, and the proceeds could have paid for a month’s treatment.

But Victor put the brakes on the sale. The Harley remains parked in their garage. It’s a symbol of the powerful woman his wife once was and his hope that one day, The Tiger will roar again.

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This story is the second in a three-part series on Lyme disease. It first ran in The Roanoke Times on Monday, Dec. 20, 2010.

December 20, 2010 | Categories: Featured, Lyme Disease | 48 Comments »

The doctor of last resort

Most Western Virginia physicians side with CDC guidelines where chronic Lyme disease is concerned. But one area doctor risks it all to make her own path.

 

By Beth Macy | 981-3435

LEXINGTON — Dr. Cathryn Harbor was volunteering at her children’s camp outside Charlottesville last summer when she noticed a startling phenomenon: In the span of one week, 10 of her 100 campers came to her complaining of flulike symptoms.

Each reported being bitten by a tick, and four were spotted with suspicious rashes. All 10 cases were a ringer — at least in Harbor’s mind — for suspected Lyme disease.

With their parents’ permission, she treated the children immediately, and then she called the health department to ask: Should we shut the camp down?

Harbor, 50, runs a solo family practice in Lexington. An avid cyclist, she rides her bike to work, which is a cottage nestled amid Washington and Lee University’s fraternity houses.

Raised in a family of academics and activists — her minister dad was a Davidson College professor, both parents were Vietnam War protesters and civil rights advocates — she had dreamed of curing world hunger before she realized she hated agricultural economics and went to theUniversity of North Carolina School of Medicine instead.

She hated medical school, too — but only because it seemed more about regurgitating facts than about complex, critical thinking.

“I don’t think the world works in multiple choice,” she says.

Her office opens onto a begonia-filled screened porch. During the warm months, her patients hear crickets chirping.

But the medical world beyond her doors is not so inviting.

In the past year, Harbor has become an outlier, a minority doctor who believes in the aggressive treatment of acute Lyme and its lingering effects, commonly referred to as chronic Lyme. It’s a position nearly as frustrating as trying to cure world hunger.

It’s so politically contentious that when she called the Virginia Department of Health to say she was swamped treating campers with acute Lyme, the response was: You can’t possibly have that many cases because the number of Lyme-carrying ticks in Western Virginia is insignificant and small.

Harbor wasn’t convinced, then or now. And she’s not standing by idly while researchers, scientists and Lyme advocates duke it out over the treatment of Lyme and the question of its latent effects.
Both sides agree on the existence of acute Lyme and its cause — a corkscrew-shaped spirochete, a bacteria that transmits Lyme when an infected deer tick feeds on a human. But this is where the camps part ways:

The medical establishment believes that acute Lyme is easily treated with a short course of antibiotics, with the exception of a very small number of patients who may get post-Lyme inflammatory illness or an immune system imbalance.

The outliers contend that chronic Lyme is a severe and potentially crippling disease, with a wide range of symptoms that set in when acute Lyme is not treated early or aggressively enough. They believe the spirochetes are virulent and hard to detect, corkscrewing deeply into joints and other collagen-rich tissues in the brain, eyes and heart.

They reason that the best regimen for late-stage Lyme includes longer courses of antibiotics, ranging from months to a year or more. But the establishment argues that long-term antibiotics are not only unproven, they’re potentially dangerous.

Meanwhile, sick people keep showing up at Harbor’s door, nearly 100 of them since February alone, some from North Carolina and Maryland. Most have already seen multiple doctors who have treated them for multiple illnesses. And yet their pains and complications persist.

In the face of uncertainty — and at great personal risk to her livelihood — Harbor has chosen to treat them aggressively for chronic Lyme, with a multipronged approach that includes prescribing more antibiotics than the Infectious Diseases Society of America and the Centers for Disease Control and Prevention recommend.

“But when you’re the doctor of last resort,” she says, “you keep trying other things.”

Roiling waters

It’s some of those other things that keep getting doctors in trouble. In September, 73-year-old Dr. Geoffrey Gubb shuttered his Eastern Shore practice after the Virginia Board of Medicine put him on probation and permanently banned him from prescribing narcotics. The investigation found that Gubb had treated more than a dozen Lyme patients with high-powered pain drugs including oxycodone without properly monitoring and documenting their conditions.

Upward of 30 doctors, most of them in the Lyme-riddled northeastern states, have been similarly sanctioned in the past decade. Chronic Lyme advocates have responded by lobbying four states to enact laws protecting doctors who prescribe long-term antibiotics.

But the volleys continue in point-counterpoint fashion, as Lyme spreads south and west from its New England ground zero. Among the establishment’s latest strategies, according to Northern Virginia Lyme lobbyist Monte Skall: Pick a so-called “Lyme-literate” doctor, go after his or her records and create a chilling effect on other doctors who dare treat outside the IDSA guidelines, considered the gold standard of care.

“A lot of physicians in our state are hesitant to get involved because of the medical debate that’s raging about this disease,” says Skall, president of the National Capital Lyme and Tick-Borne Disease Association. Her McLean-based group is pushing the Virginia General Assembly to reintroduce a Lyme bill in January that was shelved last year. She’s also a member of Gov. Bob McDonnell’s Lyme Disease Task Force, created in October to examine the diagnosis, treatment and public awareness of Lyme.

The CDC maintains that its Lyme protocol is not a mandate for clinicians. Echoing the IDSA guidelines, it recommends limiting antibiotic treatment with an eight-week ceiling but holds that the vast majority of Lyme cases are easily treated in two to four weeks.

Its case definition for Lyme is supposed to be used to confirm the spread of Lyme and then alert the public as necessary. But most doctors view the guidelines as “black and white and incontrovertible,” Skall says.

Doctors who rely only on the CDC’s narrow case definition may “fail to diagnose some patients who in fact do have Lyme disease,” especially those with late-stage neurologic Lyme, says the New River Health District director, Dr. Jody Hershey.

Others, by treating patients for “probable Lyme,” err on the side of treatment, arguing that the “serious consequences for physical, cognitive and functional disability associated with chronic Lyme disease outweigh the risks of antibiotic therapy,” Hershey says — the essence of the controversy.

Gubb was an agnostic about chronic Lyme until 2005, when he treated a seventh-dan karate black belt who’d apparently been crippled by the disease. Later that year, Gubb himself tested positive for Lyme disease as well as a malaria-like co-infection called Babesiosis.

“You’ve got 400 doctors saying Lyme’s a big deal, and 400,000 saying you should forget it, especially from the big places like Johns Hopkins and Yale. So you tell yourself, well, how can 400 be right and all this other bunch be wrong?” says Gubb, a solo family practitioner and former emergency-room doctor.

It reminds him of the early-1900s saga over syphilis. In its advanced stage, it was originally thought to be a psychiatric disorder called “general paresis of the insane.” That shifted with the discovery of the syphilis spirochete and the invention of penicillin to stamp it out.

“If you want to go into [treating Lyme], you have to go into it knowing there’s a good chance that sooner or later somebody will file some kind of a complaint,” Gubb says.

On the other hand, had he not dipped his toe into the roiling waters of Lyme: “I’d probably be in a wheelchair by now.”

‘She’s being brave’

Harbor’s minority opinion was also borne of personal experience: A tick bit her at the same summer camp in 2007 as she picked wineberries along the Appalachian Trail.

She was so blase about her bull’s-eye rash — a telltale symptom of Lyme — that she used it as a teachable moment, showing it to her patients. But she’s come to believe that she was undertreated with a 10-day course of doxycycline, a common antibiotic also used in the treatment of acne and a variety of infections.

About the same time, several of her patients — including Roanoke-area civic leader and longtime Hollins University trustee Anna Lawson — told her about their battles with Lyme and brought her books on the subject.

Lawson, who says she believes she was undertreated in the wake of a 2006 tick bite, learned about chronic Lyme from Hollins art professor Nancy Dahlstrom, who was disabled for four years before being diagnosed by a Maryland doctor. Lawson went to him, too — at a cost of several thousand dollars, none of it covered by insurance.

But she also continued seeing Harbor, who was studying the disease and trying to figure out why her infectious disease colleagues were turning so many Lyme patients away.

Last winter, Harbor had her own aha moment when she came to believe that the cyclic headaches and neck pain she’d been blaming on bicycling, hormonal issues, the stress of being a working mom with three teenagers — anything but the disabling spirochete — were actually latent effects from her 2007 Lyme.

The headache felt like a drill bit going through her skull. She used topical muscle relaxants to get through the day and sought relief from massage and physical therapists. “I had no appreciation of how horrible it was to be in pain,” she says.

By the time physical therapist Rick Sidor sought her out earlier this year, Harbor had established her own Lyme protocol. It’s an almost-echo of the guidelines adopted by the International Lyme and Associated Diseases Society — the minority doctor group that opposes the Infectious Diseases Society of America.

But long-term antibiotics are only part of her approach. She demands that her chronic Lyme patients exercise regularly and eat a diet rich in vegetables, whole grains and immune system-boosting herbs.
“She’s being brave just treating me,” says Sidor, who’s now in his seventh month of an oral antibiotic course — and says he feels better than he has in 15 years.

He believes he contracted Lyme in the mid-1990s after clearing vines from a pine tree in the back yard of his Southwest Roanoke County home, part of a newer development that’s rife with deer.

But Lyme was nowhere on Virginia doctors’ radar at that time, so his doctor treated him with an antiviral medication, which made him worse.

When he returned to the doctor a few weeks later, he was advised to see a psychiatrist, which infuriated him.

“I am not somebody that wants to lay on the couch,” says Sidor, 49, who played college football and runs his own physical therapy practice.

He was eventually diagnosed with chronic fatigue syndrome and, over the next several years, treated for bouts of pain, sleeplessness and a bone-crushing fatigue that some days made it hard to raise himself from a chair. He forgot things — the name of a popular employee, for instance — a symptom commonly referred to as “Lyme fog.” He’d go to make a pot of coffee, only to realize he’d just made one moments before.

“Last year I knew that 99 percent of America would not be at work the way I felt,” he says. “When you’re in the middle of it, it’s like the worst flu ever — on steroids — but only with this, it’s month after month, year after year.”

He wishes the naysayer doctors could feel the pain he feels. “How many others are suffering because these docs think they know everything?” he asks.

Here’s where Harbor differs from Gubb and most of her maverick colleagues: She will treat patients like Sidor with strong doses of oral antibiotics for much longer than the IDSA-recommended eight-week ceiling. But she seldom prescribes opiates, and she’s not comfortable overseeing intravenous treatment in an outpatient setting. The IV treatment may pack a stronger and more immediate punch, but it’s also more likely to summon the board of medicine to her door.

Besides, she’s not convinced that antibiotics can eradicate each and every spirochete, even though she sees the drugs as useful tools in her physician’s bag.

“I think antibiotics keep the spirochete numbers low enough that it gives the immune system a fighting chance, but I think it’s equally important to build up the immune system,” she says.

Infectious-disease doctors insist that post-Lyme complications are not caused by active spirochetes, but Harbor said she believes the science is uncertain and incomplete: “If you’re not embracing uncertainty and doing your best in the face of it, you aren’t being scientific.”

While some allege that Lyme doctors are charlatans profiting from desperate people who suffer from “affluenza,” Harbor insists she’s not getting rich. She spends 45 minutes with each new patient, has only one employee (a receptionist) and takes Fridays off to tend to family concerns.
“You’ll find me here at night sweeping the floors,” she says.

“What’s difficult is to feel that I’m endangered when all I’m doing is the best I know how to do.”

‘Not my boss’

On the Lyme treatment spectrum, Harbor is more conservative than Gubb but more liberal than LewisGale Medical Center infectious-disease specialist Dr. Muddasar Chaudry — and far to the left of his colleagues at Carilion Clinic.

Chaudry will treat outside the Infectious Diseases Society of America guidelines on occasion, including for a nurse whose cognitive function was so impaired that “she had trouble staying awake during her interview with me.” He gave her almost three months of IV antibiotics — well beyond the guideline limits, but her condition was so dire he felt he had to try something. (He doesn’t know whether the patient recovered, he says, because she never returned to him.)

In another case, a Lyme-positive veterinarian he’d already treated for 12 weeks returned for further treatment. But Chaudry refused, saying his hands were tied: “Our practice is restricted by higher authorities, like the CDC.”

A year later, he took a call from a home-health agency asking him to approve an order for IV antibiotics for the same vet, and again he refused. The woman had been so desperate for treatment that she had already started her own IV, he says.

He feels sorry for such patients, and he hates it when colleagues say it’s all in their heads.

Of the 25 to 30 Lyme referrals he gets a year, many come from Carilion practitioners, Chaudry says.

That may be because the Carilion infectious-disease department has taken such a hard-line stance against chronic Lyme — its section chief, Dr. Thomas Kerkering, doesn’t believe it exists. (“So far there is no verifiable evidence that there is a condition called chronic Lyme disease,” he asserts.)

When patients beg for antibiotics, Chaudry tells them: “Antibiotics are poisons to bacteria, and they’re also poisons to our bodies, and I don’t experiment with poisons.”

It’s an argument Harbor finds disingenuous. “What do you say? ‘I’m sorry you’re in pain, and you weren’t in pain when you were on antibiotics — but the IDSA says I can’t give you anymore’? The IDSA isn’t my boss.”

She is ethically compelled to treat patients the best way she knows how. She finds tactical flaws with the IDSA-cited studies that dismiss long-term antibiotics as ineffective and dangerous. “The research questions are posed by people who set the study up so they get the answers they want. Nobody’s doing the studies I’d be interested in seeing. Nobody.”

Can antibiotics truly cure the ailment that advocates call chronic Lyme? At this point, Harbor says the answer is unknowable, shrouded in controversy and conflict of interest. Patients are the ultimate losers in the Lyme wars, she says, because the politics of treatment have trumped patient health.

“If there were a drug that treated chronic Lyme effectively, the guidelines would be paid for by the drug industry, and there would be a different narrative about Lyme,” she says.

About that much, she and Chaudry agree. Pharmaceutical companies don’t profit on short-term antibiotics — not the way they do on lifelong cholesterol and diabetes drugs — which hinders the development of newer agents, Chaudry says.

“It’s very expensive to develop a new drug, and if they’re not going to make money, they’re not going to work on it,” he says. “So the government has to fund the research.”

Tick ‘hysteria’

It all comes back to the ticks.

Harbor admits she’s scared to death of the bugs, partly because there’s been scant study of them in recent years. On vacation in Alaska last summer, she and her W&L geologist husband, David, joked that they’d rather deal with grizzly bears than ticks: At least with bears, it’s not so insidious; either you’re dead or you’re not dead.

The latest research done on Ixodes scapularis in the South was published in 2004 — in Florida, nowhere near the Mason-Dixon line. Yale University researcher Robert Jory Brinkerhoff collected ticks in Western Virginia in 2004 and 2005 as part of an Ixodes occurrence map of the eastern United States. Back then, he found no Ixodes from collection sites in Grayson, Smyth and Highland counties — the closest spots to Roanoke that were sampled. But overall, the study did suggest expansion of Ixodes south of its original New England and Upper Midwest hotspots.

“Where there used to not be [Ixodes] ticks, it looks like there are now,” Brinkerhoff says.

While the state’s public health entomologist David Gaines concedes that acute Lyme in Virginia will easily surpass 1,000 new cases this year — almost quadruple what was reported five years ago — he doesn’t want the public to fall prey to tick “hysteria.”

The vast majority of Southeastern ticks are auburn-legged lone star ticks, not the black-legged Ixodes — and only 10 percent of the Ixodes are known carriers of Lyme, Gaines says. But those numbers are based on old research, none of which was done in Western Virginia.

With no state funding for current research, Gaines has had to settle for some unscientific sampling of his own on his family’s Albemarle County farm. He didn’t spot his first black-legged tick there until 2006, but this summer he noted that of the 90 ticks collected, 25 were the black-legged Ixodes.

Those findings fit the suspicions of Old Dominion University scientist Daniel Sonenshine, who published the definitive text on the subject, “The Biology of Ticks,” in 1993. The last time he sampled ticks west of Tidewater was 17 years ago, when Sonenshine and his researchers found a single Ixodes at Fort Lee, near Petersburg.

“But everything has changed so much,” he says. “Everything we used to think was the case before global warming is so different that you hate to make prognostications based on old data.”
Though the first handful of confirmed Lyme in Western Virginia was reported in 2006, the numbers reached a critical mass in the summer when the Virginia Department of Health held a news conference to alert the public. In the Roanoke and New River valleys alone, 65 cases were confirmed this year.
That trend makes monitoring all the more imperative, Sonenshine says.

“This is a disease that’s been affecting almost 30,000 people a year, with a possible threat of long-term consequences if left untreated,” he says. “And the public is frightened of it. So this is not just some little rash you’re talking about.”

Harbor wants to know what’s going on with Lyme in Virginia, in her county, right now. “Because I believe people are getting it, and some of them are self-employed and hunters, and they can’t work anymore. They’re not going on unemployment or disability. They’re just screwed.”
If she has to put her neck on the line to get them treatment, well — no one ever accused her of being a conformist.

It bothers her that the medical establishment won’t entertain the possibility of chronic Lyme.
“It’s
position with my patients to start with: I’m hostile about what you think you have,” Harbor says.

It’s become such a sore point that some Lexingtonians have quietly gone behind their doctors’ backs to see her after fearing they were undertreated for Lyme.

“These are the people who worry me most — the ones who think they have Lyme and go to their doctor, who’s trained that if you think you have Lyme, you’re crazy.

“And fair enough, we do need to consider other things,” she says. “But why do they think the ticks out there aren’t carrying spirochetes? What’s their data source, and when’s the last time they checked?

“And where’s the health department in all this? It’s hiring Mr. Gaines to tell me there’s no Lyme on the AT when I’ve seen it in my campers.”

She may feel embattled, but Harbor says she sleeps well at night knowing that most of her patients are not just being heard, they’re also getting better — with or without the evidence-based research to prove why that is.

“I don’t like operating out of fear,” she says. “But the truth is, I’m more afraid of spirochetes.”

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This story is the third in a three-part series on Lyme disease. It first ran in The Roanoke Times on Tuesday, Dec. 21, 2010.

December 19, 2010 | Categories: Featured, Lyme Disease | 45 Comments »