Jefferson native pens Lyme book - WI

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[RLL] Jefferson native pens Lyme book - WI

Jefferson native pens Lyme book

By Pam Chickering

Daily Jefferson County Union staff writer

Fort Atkinson, Wisc., Vol. 136 No. 78

Thursday, July 6, 2006 issue

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JEFFERSON - P. " Trish " Yerges never expected nor wanted to become an

expert on Lyme disease.

However, life had other plans for her, and now, several years after her

daughter, , contracted the disease, Trish has released a book of

clinical profiles on Lyme patients, using her daughter's experience and that

of fellow Lyme patients to help others affected by the disease.

Trish, a 1975 graduate of Jefferson High School, is the daughter of

Shirley and Mark Landowski, who reside between Jefferson and Fort Atkinson.

Yerges herself lived in the area until age 40, when her husband, 's

father, died of cancer.

Later, Trish remarried and moved to northeastern Oregon. came

with her, but returned to Wisconsin every summer for much-awaited vacations.

It was in Wisconsin, while visiting a friend in Whitewater, that then

12-year-old received the tick bite that led to her Lyme disease.

" Three days after she got the bite, she spiked a high fever of 103, had

body aches and felt awful: headache, nausea, extreme light sensitivity,

chills... " Trish recalled. " We took her to the ER in Fort, and the doctor

there, Dr. Duffy, (who is now serving in Iraq) immediately recognized

the signs. "

Along with fever and aches, had developed a visible bull's-eye

rash around the bite site, a telltale sign of Lyme.

At that time, though, Lyme disease was not as common---or as

well-reported---as it is today, and Duffy recommended that 's family

get a second opinion.

The on-call pediatrician felt it wasn't Lyme, as the Fort Atkinson area

did not see much of this disease, but he said definitely had an

infection, prescribing a 21-day course of antibiotics.

Trish also contacted her brother-in-law, a pharmacist, who recommended a

much more aggressive course of antibiotics to combat Lyme.

Back in Oregon, 's doctor could still see the faint marks around

the bite and also felt she had Lyme, putting her on eight weeks of

antibiotics.

" I thought we'd nipped it in the bud, " Trish said.

After six months, however---as happens to many undertreated Lyme

patients--- suffered a relapse, complete with paralysis and seizures.

Her symptoms never had completely vanished, and then they began to

worsen. Dark purple or sometimes red circles appeared around her eyes.

hated how she looked and tried to cover it up with makeup.

Her joints swelled up and ached like a 90-year-old's. She had trouble

lifting her school books or even her own 110-pound body weight, choosing to

study throughout her lunch hour so she didn't have to take her texts home.

Once did return home from school, she took a hot bath and was in

bed by 4:30 p.m., to sleep until morning.

" I'd even warm up the bed for her before she got in, " Trish said. " It

was all she could do to go to school and sleep, " Trish said.

Trish also described hearing yell to her from the bathroom one

day, where the girl had been taking a shower. She'd lost the strength to

lift her arms above her head or wash herself and began to feel faint in the

tub.

" I found her curled up in a ball under the spraying water, " the mother

said. " She couldn't get out without help. "

" We were really scared, " Trish said. " In northeastern Oregon living

among the Blue Mountains, we were really isolated. I panicked, and like any

frantic mother searching for help, I turned to the Internet. "

At first, Trish sought a support group for Lyme patients, but she didn't

get any responses. In desperation, as 's symptoms continued to

worsen, she connected with Dr. Rita Stanley, who is associated with the

prominent Legacy Good Samaritan Hospital in Portland, Oregon.

Fortunately, Dr. Stanley responded immediately, telling Trish that Lyme

is a complicated disease with which many doctors are not extremely familiar.

" Our pediatrician was fresh out of college and extremely humble, so he

agreed to have Dr. Stanley help advise him, " Trish said.

On Stanley's recommendation, the pediatrician put on nine months

of antibiotics. also underwent a series of tests for Lyme at the

family's out-of-pocket expense.

The first test, done through the Oregon State Department of Health

laboratory, showed negative results. However, Stanley said that false

negatives often appear within the first few months a person has Lyme

disease, recommending a second, more comprehensive test be done through a

California lab which more frequently deals with Lyme. That one came up

positive.

" This shows there are frailties in our medical system, " Trish said,

noting that she has since learned that early Lyme disease tests often show

false negatives because the patient's blood has not yet developed enough

antigens.

" was tested throughout her illness, and false tests helped lead

to a delayed diagnosis, " Trish said.

From what she's now learned, the mother agrees with Dr. Stanley's

recommendation that a clinical diagnosis be made on possible Lyme patients,

and that they be aggressively treated from that time on, without relying on

not-yet-accurate tests.

On Dr. Stanley's recommendation, went on a new protocol of drugs

that went well beyond the one-month treatment recommended for Lyme patients

by the Infectious Disease Society of America.

" One month, as we saw, was insufficient, " Trish said. " I think in time,

this will be recognized and those guidelines will be changed, but for now,

it's an obstacle to proper treatment. "

The treatment carried its own cost. Being on two antibiotics for so

long led to feel nauseous for half the day. And before she began to

feel better, the interaction of the disease and the aggressive treatment

made her feel worse for a time.

" Unfortunately, that's another feature of the disease, " Trish said.

" Lyme patients often experience 'Herx' flare-ups during the healing

process. "

She explained that this happens as the Lyme bacteria are being killed

off and the body kicks in with elevated white blood cell levels, making the

patient feel like he or she has the stomach flu on top of other symptoms.

" The patient has to be aware that this is part of the healing process, "

Trish said. " And it can happen throughout the healing process, but the

flare-ups get less strong each time. "

As the treatment began to take hold, Trish said, experienced this

as she felt electrifying jolts she described as being " like lightning "

running through her arms.

" The Lyme bacteria tries to reach the central nervous system, " Trish

said. " It can get through the blood barrier to the brain. "

's disease made school almost unbearable, as felt clumsy,

sore, and ugly and became the target of ridicule by other students---and

even to some extent, her gym teacher---who thought she was just making

things up.

Trish said her daughter got a doctor's excuse which allowed her to skip

running exercises in her physical education classes.

" Her teacher, clearly irritated by the note, firmly reminded her that

she would perform all the other non-exempt activities. "

Trish quoted her daughter as saying, " I was so embarrassed because some

of the other kids heard this and started to tease me, saying I was just

being lazy and faking it. "

" It took all the courage she had to attend seventh-grade at public

school, " Trish said of her daughter.

Despite feeling like she'd been " run over by a truck, " made it

through the school year, not missing a day.

The mother described seeing her daughter, formerly an active,

outdoor-loving child, dragging herself up the three steps into the [school]

bus by pulling herself up the handrails, then plopping into the first

available seat.

Even as she continued in her aggressive treatment, experienced

still more symptoms, one day failing to even get out of bed due to a sudden

paralysis of her legs. It only lasted five minutes but during that time,

couldn't move her legs, although she could feel them.

The family didn't know what to think, but again, Trish researched the

issue and found that this sometimes happened in Lyme patients whose disease

had begun to affect their central nervous system.

Eventually, though, turned the corner, and her symptoms went

away, her achy knees being the last to leave her. Still, she didn't want to

go through another school year like her seventh-grade one, and she decided

to home-school in the future to avoid difficulties should she relapse again.

Among the obstacles facing Lyme disease patients today are common

misdiagnosis, undertreatment, and inaccurate tests.

It took six months beyond her relapse to rid herself of all the

Lyme symptoms, but she has been healthy ever since.

With less-common diseases like Lyme, Trish said, parents have to be

strong advocates for their children and to seek out knowledgeable help. The

same goes for the owners of afflicted pets: Lyme disease does affect

animals, for example, causing debilitating and even deadly symptoms.

" These days, people travel all over the country, and just because a

disease is not so prevalent in one area, doesn't mean someone can't pick it

up, " Trish said. " Also, Lyme disease is spread by migratory birds, so

people should never have a sense of false safety. "

, now 19, is happy, active and healthy enough to [work full time

as a licensed insurance office manager] and to take up snowboarding. But

for a time, Lyme affected every area of her life.

One thing hasn't changed, Trish said. still travels to Wisconsin

each year to see family and friends, even though this was where she

contracted the disease.

The Book

While all of this was happening to , Trish was writing for the local

newspaper---The Valley News of Elgin, Oregon---and also doing some freelance

work, including her first book, " The Adventures of Scooper the Beagle Dog. "

Knowing Trish was a writer, Dr. Stanley approached her to ask if she'd

ever thought about co-authoring a book with her about Lyme disease, but the

mother did not want to take up the topic until several years had passed and

she knew that [had remained] symptom-free.

At that point, she finally took Stanley up on her offer and began work

on the book of clinical studies, which was to be a resource guide both for

medical professionals and for families who find themselves struggling with

this disease.

" Dr. Stanley wanted to interview 14 patients and write a book about

their experiences at a (10th grade) reading level so the layperson could

access it, " Trish explained.

The book took a year-and-a-half to write.

The pair started by putting out a call on the Internet for people who

had experienced the disease. The co-authors sought a mixed group of 14

interviews, and 80 people responded, including some people who were doctors

as well as Lyme patients.

" We had to screen them, " Trish said. " They all had to have credible

Lyme diagnoses, and we were also looking for a variety of geographic

locations and backgrounds.

Additionally, Trish said, the co-authors wanted to feature people who

were going through traditional treatment rather than alternative therapies.

From these interviews, the authors hoped to draw some lessons that would

help people avoid some of the pitfalls that earlier patients had suffered

while trying to obtain a diagnosis and proper treatment for the disease.

The patients featured included nine women and five men. They came from

a variety of backgrounds, from a 12-year-old child () to an IBM

analyst, to a successful loan underwriter, to an environmental health

scientist, to a pastor, to mountain climbers, to a registered nurse, to a

heavy machinery [repairer], to one patient who contracted Lyme disease in

the womb.

" You can be born with it if your mother is not properly treated, " Trish

said.

" Each story has its own lessons, " Trish said, noting that 's is

among the least complicated of the cases.

A banker who was a former athlete had to hide his disease from his

employer for years to avoid possible job discrimination, masking his

symptoms and making excuses as to why he couldn't play golf anymore, for

example.

In some cases, Trish said, the Lyme experience divided families, as when

one spouse got tired of " doctoring " the other for a nebulous condition that

never seemed to go away.

" These are sensitive, personal stories, but the people were willing to

share them in order to help others, " Trish said. " The patients want people

to know some of the hard lessons we learned---like don't rely on early blood

tests, and don't stop the antibiotics before the course is done unless your

doctor advises you to quit. "

" Another thing that's very insulting to patients is being told it's 'all

in your head.' " Trish said. " Lyme disease is physiological, not

psychogenic. "

To make the book even more accessible, the authors determined that

they'd create a glossary of medical terms and include a list of resources

for families.

The book, " Confronting Lyme Disease: What Patient Stories Teach Us, "

carries a copyright of 2005 and was released in March of this year.

Locally, it's available at the Velveteen Rabbit in Fort Atkinson and Trish

also has donated copies to both the Fort Atkinson and the Jefferson public

libraries.

Trish has taken charge of marketing the book herself. It also was on

display at the largest book exhibition in the country, held this year in New

Orleans and put on by the American Library Association, and it's available

on Amazon.com.

" It's intended as a serious, educational book, " Trish said. " We were

fortunate to be able to get some great endorsements, including an

introduction written by Dr. Lesley Ann Fein of New Jersey, Medical Director

of the Lyme Disease Society and endorsements from the president of the

Canadian Lyme Disease Foundation, among others.

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" Confronting Lyme Disease: What Patient Stories Teach Us " by (Trish)

P. Yerges & Rita L. Stanley, Ph.D.

website: http://www.confrontinglyme.com/