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One Family's Struggle With Lyme Indicative Of Larger Debate

BY JEFF WHITE

As one-year-old Maverick Shaw wrestles with plastic building blocks on top of

a large kitchen island, he hurts inside.

He has arthritis throughout his neck, shoulders and hips. There are some

nights when he can not get comfortable, thrashing around in pain for up to an

hour before his mother, Karen, can ease the pain.

Maverick's 10-year old cousin, Ryan Shaw, often has trouble with his eyes due

to the inflammation behind them. His head and neck ache, and in the middle of

some nights he wakes up dizzy, not knowing where he is.

Both children have Lyme, the disease resultant from the bacteria that is

hosted in and transmitted by the seemingly harmless, insignificant deer tick.

Currently, Connecticut is the second most Lyme-infected state in the nation,

and more specifically, between 1994 and 1997, Fairfield County recorded the

fourth highest number of Lyme disease cases in the United States. Last year

alone, Newtown had 43 confirmed cases of Lyme, and nearly 180 cases over the

past five years, according to the Connecticut Department of Public Health.

Newtown's numbers only tell part of the story, however, because they are

ultimately compiled by the Center for Disease Control (CDC) in Atlanta, and

based on a very specific set of criteria. For a Lyme case to be considered a

statistic, the CDC requires blood work tested positive for Lyme bacteria and

an identifiable tick bite or rash.

More and more, the generally excepted tests for Lyme are proving scarcely

30-40% accurate, compounded by the fact that only 30% of those infected will

actually develop a rash. Sufferers are left languishing with the symptoms of a

disease tests say they do not have sometimes for years, before an accurate

Lyme diagnosis and treatment can be provided.

It amounts to a battle in the medical establishment concerning how to

accurately diagnose and treat Lyme. There are those doctors grounded in CDC

criteria, while other doctors recognize Lyme for the multi-systemic disease

that it is; a disease that takes on more forms than blood tests can account

for.

It is a battle the Shaw family, stretched across three households in

Southwestern Newtown and over Redding's border, knows only too well.

A Family's Battle With Lyme

In her bleach-white kitchen, Maggie Shaw, Ryan's mother, tells of the struggle

with Lyme that has come to dominate her life, as well as the lives of the

entire Shaw family.

"Last year, I went to a doctor for severe back pain," she recounts. "He did

some tests and concluded nothing was wrong, but referred me to a pain

management center.

"I was sitting there thinking `God, all my joints are aching, my head hurts.'

So then I went back and asked if they could test for Lyme. In the back of my

mind I thought this was Lyme disease, because we had been out in the woods and

I had pulled ticks off of the kids.

"A week later the results of my first Lyme test came back negative, so I

thought `oh well,' and went to the pain management center."

Maggie Shaw's pain did not abate, but rather worsened, with continued neck and

back pain, headaches, a growing inability to walk, and severe memory lapses.

She was not able to cope with her checkbook, or with her children's homework

anymore. She went back for another Lyme test.

But the second Lyme tests Maggie Shaw insisted upon also turned up negative.

"What these doctors did not tell me is that the tests are only 30-40%

accurate. I'm a nurse, and I felt like I would never take those types of odds

lightly," she says. "Finally a week went by, and I thought I was dying. I

really thought I was dying."

Having been sent to pain management centers and rheumotologists, desperation

caused Maggie Shaw to seek the opinion of Dr Stephen Phillips of Greenwich, a

notable doctor who has done extensive research on Lyme. Without any tests, he

told her he was 90% positive she had Lyme.

Sure enough, the blood test he used to back up his diagnosis came back

positive. When she was at the point of having seizures, Maggie Shaw was

finally diagnosed with Lyme.

In total, 11 members of Maggie Shaw's extended family, most of whom live

within a five miles radius of each other, have Lyme. Her sister-in-law, Karen

Shaw, had severe depression, anxiety attacks and heart palpitations.

Janet Shaw, another sister-in-law, has a husband who walked around with the

disease for four years, coping with chronic headaches, numb legs, eye and ear

pain.

Karen Shaw had Lyme when she was pregnant with Maverick, which is most likely

how the one-year old contracted the sickness. Maggie Shaw's son, Ryan,

probably came in contact with a tick while doing what kids do, playing in the

back yard of his family's home on Eden Hill Road. Although now diagnosed and

receiving treatment, he still has fits of crying and pain.

As Maggie Shaw drives down her road, she can point out 12 different homes that

have someone suffering with Lyme.

The Shaws are casualties of a debate within medical circles concerning how to

diagnose Lyme effectively. They have what is called late-stage or disseminated

Lyme, the result of not catching the disease in time. But it has become harder

to detect Lyme early when many doctors are not receptive to symptoms not,

until recently, considered indicative of Lyme.

A Medical Tennis Match

"The average person sees seven doctors before getting [an accurate]

diagnosis," says Bonnie Friedman, a representative of Dr Bernard Raxlen's

office in Greenwich. "It's a really individual disease, so it is hard to fit

it into a formula."

Still, many doctors try to. They look for the typical bull's eye rash and

positive blood test (which most sufferers actually lack), and dismiss symptoms

such as chronic headaches, extreme muscle aches and depression as indications

of other illnesses.

The debate hinges, Mrs Friedman concludes, on the distinction between those

doctors who base their diagnosis on medical findings, and those who base their

diagnosis on clinical findings.

Yale has long been on the vanguard of Lyme research, but they have not

published a definitive study on the disease in four years, according to Mrs

Friedman. The result are doctors who flock to both the expertise of Yale and

the CDC even while new information and examples are emerging concerning Lyme's

many symptoms, least of all, it seems, being the bull's eye rash.

Doctors that base their diagnosis mostly on blood work believe that even the

worst cases of Lyme can be cured in 28 days by intravenous (IV) antibiotics, a

theory developed mostly at the Yale Lyme clinic.

Other doctors utilize blood tests only in a supporting role, focusing more of

their attention on the patient's different symptoms, recognizing in most cases

these days, as Mrs Friedman points out, often the sickest Lyme patients are

those who test negative for the disease. They respond better to clinical

treatment.

These doctors favor prolonged antibiotic treatment, because many sufferers

have reoccurring Lyme, or post Lyme syndrome, causing the residual symptoms of

headaches, fatigue, depression and overall pain.

The Shaw family is on prolonged antibiotics. Maggie Shaw feels that both she

and her son Ryan will be taking medication for at least a year, and probably

for longer, depending on the regression of their symptoms.

Ryan Shaw's diagnosis, by pediatrician Dr Charles Ray Jones in New Haven, came

long after his body had become wrought with Lyme. He, like many members of the

Shaw family, was told repeatedly that because he was testing negative, he did

not have the disease.

Kathy Urrea of the Lyme Care Center in New Jersey calls the controversy "very

muddy waters." "It is just a controversial thing. I mean, who's right? There

is a percentage of patients that CDC recommendations won't work for," she

said.

"It is a dilemma of treatment. There is a lot of misinformation out there,"

says Mrs Friedman.

"The problem is those people walking around who do have it, though they brush

off the possibility with excuses like `I work hard, so that's why I'm tired,'

or `I'm must be getting older.' But that is not always the case," points out

Karen Shaw.

Although receiving treatment, 10-year old Ryan Shaw still battles a colon

infection called erlikia, brought on by Lyme. Maggie Shaw and other members of

the family, because of late onslaught of their Lyme, also struggle with

co-diseases of Lyme.

Ultimately, the diagnostic debate has left them with many questions.

"What is the town doing about this?" asks Karen Shaw."Is there education being

done? No. Are there prevention strategies being done? No."

For the town's part, Director of Health for Newtown Mark Cooper says that his

staff receives ticks, and sends them to the Department of Health for testing.

He is encouraged that more and more people seem to be seeking testing early.

But for that testing to be effective, many argue that a definitive attack plan

on diagnosing Lyme needs to be established, and accurate, timely testing the

norm in Connecticut.

"We're here in the Lyme center of the world, and yet we have to send our labs

out to California and Long Island and Illinois. Why are there not any labs in

Connecticut that are doing these Lyme test the way they should be done?" Karen

Shaw questions. "It's ridiculous."