Second Article Roanoke Times

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In search of hope, facts

The burden of Albright’s longtime physical and mental ailments

has chipped away at her livelihood and her family’s finances.

Albright has drawn support from her family, including daughter

Bongard (left), 12, and son Bongard, 8. Her prolonged

intravenous antibiotics cost almost $40,000 a year, and many doctors

contend that treatment is harmful to both her and the public. KYLE

GREEN | The Roanoke Times

By Beth Macy | 981-3435

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

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.â€

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 ’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 — 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.

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.

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. 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’

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 ,

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.

Albright

& Bongard, the law firm and title agency that Victor Bongard owns

with his wife, has faced downsizing, mainly because of his wife’s

absence from the job.

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 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. 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.â€

A doctor at Mayo suggested that label after 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 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.â€

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 , 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, , 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.â€

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.

Dr.

Kerkering, Carilion Clinic's infectious diseases section chief

and a professor at the Virginia Tech Carilion School of Medicine has

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.

It’s the kind of doctoring that infuriates Dr. 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.â€

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.â€

Gale 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.

( 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,â€

he says.

In fact, complications from such treatment have included infected IV

lines, gallbladder problems, yeast infections and, in one case, death.

Albright injects herself with a needle of Lovenox, a blood thinner that

is part of her daily regimen of shots, pills and intravenous treatment

for chronic Lyme disease. Before this diagnosis, doctors attributed her

symptoms to ankylosing spondylitis, stress or “convergence disorder.â€

KYLE GREEN | The Roanoke Times

“Lyme-literate†doctors believe that many Lyme cases fall through the

cracks of undertreatment — or in ’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.â€

His mantra, a line he likes to shares with other infectious disease doctors in

town: “Anecdote squared does not equal data.â€

‘Not evil, just wrong’

Kerkering is leery of stories such as the one reported in an October Roanoke

Times obituary. ette 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 ette 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 ette’s illness, Malinchak

referred her to well-known Lyme physician Dr. ph 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 ette 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,

ette 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.

Albright — surrounded by kids (from left) Bongard,

Bongard and Bongard — often lacks the energy to do many tasks

around the house. Neurological complications, which her specialist

attributes to chronic Lyme disease, cloud her ability to think.

Misspelling her son’s name or forgetting her own happens at times. KYLE

GREEN | The Roanoke Times

“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 ette’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.â€

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.â€

Sowder says he had shielded his wife from the politics of the

disease, including what he calls the “tin-foil-hat conspiracy peopleâ€

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.â€

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,

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, 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.â€

Her husband disagreed. He saw 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?â€

In mid-October, ’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.â€

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.â€

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.â€

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 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.â€

Last spring, had arranged to sell her beloved Harley-son,

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.

-30-

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.

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--

" Horses are God's Apology for Men. "

" Let us awaken then, and envince a different spirit, --a spirit that shall

inspire the people with confidence in themselves, and in us -- a spirit that

will encourage them to persevere in this glorious struggle, until their rights

and liberties shall be established on a rock. " ---- , 1777