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.
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.
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.