Roanoke Times Lyme Article

[Guest guest]

Salvos launched in Lyme dispute The rise of the tick-borne disease in

Virginia has created a political and medical divide. Part one in a

three-day series.

By Beth Macy <mailto:beth.macy@...>

981-3435

[As far as the medical establishment is concerned, chronic Lyme disease

doesn't exist. But those who fight crushing fatigue and cognitive

impairment, such as Blacksburg resident Albright (left), question

that notion. After more than two decades, and husband Victor

Bongard (right) believe they've found a glimmer of hope — long-term

intravenous antibiotic therapy — which is barely covered by

insurance.]

Photos by Green | The Roanoke Times

As far as the medical establishment is concerned, chronic Lyme disease

doesn't exist. But those who fight crushing fatigue and cognitive

impairment, such as Blacksburg resident Albright (left), question

that notion. After more than two decades, and husband Victor

Bongard (right) believe they've found a glimmer of hope — long-term

intravenous antibiotic therapy — which is barely covered by

insurance.

[ Albright laughs as she sews a patch on her son

Bongard's karate training uniform. While , 10, and his brother,

, 8, are both advanced in karate, it's their mom who may be

staring down a tough opponent. — a lawyer who had been such a

fierce negotiator that her colleagues nicknamed her The Tiger — has

what some call chronic Lyme disease.]

Albright laughs as she sews a patch on her son Bongard's

karate training uniform. While , 10, and his brother, ,

8, are both advanced in karate, it's their mom who may be staring down

a tough opponent. — a lawyer who had been such a fierce

negotiator that her colleagues nicknamed her The Tiger — has what

some call chronic Lyme disease.

[Dog groomer Mauricia Shanks washes a dog at her business in

Pearisburg. Shanks contracted Lyme disease in July 2009. That year, she

was the first reported case of Lyme in Giles County, but she said she

had a difficult time getting it reported and had go to Northern Virginia

for treatment. Because treatment was delayed, she said it took her nine

months to get well.]

Dog groomer Mauricia Shanks washes a dog at her business in Pearisburg.

Shanks contracted Lyme disease in July 2009. That year, she was the

first reported case of Lyme in Giles County, but she said she had a

difficult time getting it reported and had go to Northern Virginia for

treatment. Because treatment was delayed, she said it took her nine

months to get well.

Video Navigating the chronic Lyme debate

Video by Loew | The Roanoke Times

Comments Your take

* Share your thoughts on the Lyme disease debate

<http://www.roanoke.com/news/roanoke/wb/271231#comment>

Lost in the Woods: Navigating the debate over Lyme disease Coming Monday

A desperate seeks out experimental therapy, while Carilion's top

specialist says such treatment has " no evidence of benefit. "

Her husband called her The Tiger. Their colleagues did too.

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, 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, 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, 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.

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 -- 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.

Nagy-Agren of the Veterans Affairs Medical Center in Salem.

Dueling narratives

Back in 2006, 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.

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 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 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 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. ette

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 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. Dowling of Gale 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. 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, 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 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 's eerily similar symptoms suggested that she get

tested for it, too.

In late 2009, she found Dr. 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, 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.

[Guest guest]

great article, thanks.

looking forward to pts 2 and 3.

ellen

>

> Salvos launched in Lyme dispute The rise of the tick-borne disease in

> Virginia has created a political and medical divide. Part one in a

> three-day series.

> By Beth Macy <mailto:beth.macy@...>

> 981-3435

> [As far as the medical establishment is concerned, chronic Lyme disease

> doesn't exist. But those who fight crushing fatigue and cognitive

> impairment, such as Blacksburg resident Albright (left), question

> that notion. After more than two decades, and husband Victor

> Bongard (right) believe they've found a glimmer of hope — long-term

> intravenous antibiotic therapy — which is barely covered by

> insurance.]

> Photos by Green | The Roanoke Times

>

> As far as the medical establishment is concerned, chronic Lyme disease

> doesn't exist. But those who fight crushing fatigue and cognitive

> impairment, such as Blacksburg resident Albright (left), question

> that notion. After more than two decades, and husband Victor

> Bongard (right) believe they've found a glimmer of hope — long-term

> intravenous antibiotic therapy — which is barely covered by

> insurance.

> [ Albright laughs as she sews a patch on her son

> Bongard's karate training uniform. While , 10, and his brother,

> , 8, are both advanced in karate, it's their mom who may be

> staring down a tough opponent. — a lawyer who had been such a

> fierce negotiator that her colleagues nicknamed her The Tiger — has

> what some call chronic Lyme disease.]

> Albright laughs as she sews a patch on her son Bongard's

> karate training uniform. While , 10, and his brother, ,

> 8, are both advanced in karate, it's their mom who may be staring down

> a tough opponent. — a lawyer who had been such a fierce

> negotiator that her colleagues nicknamed her The Tiger — has what

> some call chronic Lyme disease.

> [Dog groomer Mauricia Shanks washes a dog at her business in

> Pearisburg. Shanks contracted Lyme disease in July 2009. That year, she

> was the first reported case of Lyme in Giles County, but she said she

> had a difficult time getting it reported and had go to Northern Virginia

> for treatment. Because treatment was delayed, she said it took her nine

> months to get well.]

> Dog groomer Mauricia Shanks washes a dog at her business in Pearisburg.

> Shanks contracted Lyme disease in July 2009. That year, she was the

> first reported case of Lyme in Giles County, but she said she had a

> difficult time getting it reported and had go to Northern Virginia for

> treatment. Because treatment was delayed, she said it took her nine

> months to get well.

> Video Navigating the chronic Lyme debate

> Video by Loew | The Roanoke Times

> Comments Your take

> * Share your thoughts on the Lyme disease debate

> <http://www.roanoke.com/news/roanoke/wb/271231#comment>

> Lost in the Woods: Navigating the debate over Lyme disease Coming Monday

> A desperate seeks out experimental therapy, while Carilion's top

> specialist says such treatment has " no evidence of benefit. "

>

> Her husband called her The Tiger. Their colleagues did too.

>

> 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, 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, 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, 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.

>

> 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 -- 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.

> Nagy-Agren of the Veterans Affairs Medical Center in Salem.

>

> Dueling narratives

>

> Back in 2006, 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.

>

> 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 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 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 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. ette

> 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 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. Dowling of Gale 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. 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, 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 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 's eerily similar symptoms suggested that she get

> tested for it, too.

>

> In late 2009, she found Dr. 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, 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.

>

>

>

>