8/7/01: The trouble with Lyme disease

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http://www.post-gazette.com/healthscience/20010807hlyme4.asp

The trouble with Lyme disease

Diagnosis is erratic and many patients believe their suffering is taken

lightly

Tuesday, August 07, 2001

By Virginia Linn, Post-Gazette Staff Writer

Here it was, the start of tick season in a state with one of the highest

Lyme disease rates in the country, and it still took evaluations by a

pediatrician, a hospital diagnostic specialist and four infectious disease

experts before an 11-year-old girl with the telltale bulls-eye rash was

diagnosed with Lyme disease.

That's because Maddison Stimmler of Natrona Heights, despite having

flu-like symptoms and pain, never tested positive for Lyme in a blood

antibody test. Without that positive result, she didn't meet the strict

government criteria for her illness to be counted as Lyme.

But for the doctors involved, there was no doubt that the Highlands Middle

School student had been infected by a tick, probably in her back yard in

early May.

That's the confounding characteristic about this disease, which is caused

by the corkscrew-shaped bacteria Borrelia burgdorferi and was first linked

to tick bites in Lyme, Conn., in the mid 1970s. There's no perfect test,

and the disease is just as difficult to diagnose now as it was then.

Maddison, who just turned 12, is lucky because Dr. Carlton Gartner, chief

of diagnostic referral at Children's Hospital, put her on a dose of the

antibiotic doxycycline that has cleared up the condition.

Tammy Burleson-Berkoben hasn't been so lucky.

The 39-year-old mother of two believes she was bitten by an infected tick

shortly after moving to Township from Florida in the early

1990s, when she spent a lot time hiking in the thick woods around her

home.

Since then, a spectrum of symptoms has emerged -- arthritis pain and

weakness in her legs that made it difficult to walk, overwhelming fatigue

and mental confusion to the point that on a recent day, she lost her way

in own her home. Local doctors have told her she had fibromyalgia, chronic

fatigue, maybe multiple sclerosis. They've sent her to psychiatrists, told

her it's all in her head.

Burleson-Berkoben's symptoms are markedly different from Maddison's. But a

few months ago, she too was diagnosed as having Lyme disease, though with

a different, chronic form. Now on leave from her job as a flight

attendant, she is struggling to get well -- a process that has required

her to fight just as hard against doctors for treatment as she has against

the disease.

How to treat chronic Lyme is the most contentious and controversial part

of this infection, pitting patients against doctors who refuse to give

them antibiotics for their symptoms. Lyme experts agree that antibiotics

work for 90 percent of patients. But in a small group of patients, severe

problems that mimic symptoms of many other diseases persist or return.

It's not clear what causes these problems or how best to treat them.

" I have to get my life back, " she said. " I can't continue to live this

way. "

Burleson-Berkoben has started a Lyme disease support group in the South

Hills. Another group has met at an Etna church since 1989.

Nationally, the disease has grown 25-fold since 1982, according to the

Centers for Disease Control and Prevention. More than 90 percent of all

cases occur in just nine states, including Pennsylvania.

So far, only a handful of cases have been reported each year in Allegheny

County: 14 in 1996, seven in 1997, 21 in 1998, 15 in 1999 and 11 in 2000.

As of mid-July this year, seven were recorded.

Ruth Ann Tobin, a leader of the Etna support group, calls those figures

" absurd. "

" I get hundreds of calls, " she said. She is among the Lyme sufferers who

believe the disease is vastly under-diagnosed and under-treated.

Indeed, the Lyme Disease Foundation, the first and largest Lyme advocacy

and scientific nonprofit organization, in Hartford, Conn., believes the

count is 13 to 15 times higher than the roughly 16,000 cases reported each

year to the CDC.

When the county Health Department started getting Lyme reports, the people

had been infected in places like New England and the Poconos. But as in

Maddison Stimmler's case, people also are contracting the disease here.

" We're just going to have to make more people aware of it if we see more

cases, " said Gartner, the Children's diagnostics specialist. " It's bound

to happen; we have the deer and the ticks. "

A long path to diagnosis

Sandi Stimmler, Maddison's mother, was upset that it took a month to get a

diagnosis for her daughter.

The girl first developed red bite marks on her left leg in early May. They

were not itchy, but they were painful, prompting the first visit to the

pediatrician. The doctor told her they were spider bites and gave her a

salve to put on the rash.

Within a few days, the rash turned into the bulls-eye and spread to about

six inches in diameter. The pediatrician next thought it was a skin

condition. Two days later, Sandi Stimmler had Maddison in the emergency

room with a lot of pain and flu-like symptoms. Tests for a strep infection

and Lyme both came back negative.

When her daughter's condition worsened, Stimmler marched into the

pediatrician's office and demanded a referral to Children's.

" I didn't know much about Lyme, " Stimmler said. " I put my trust in my PCP

[primary care physician]. Not only is the general public unaware of Lyme

disease, unfortunately, some of the doctors need to be aware. "

Another problem is that lab testing is not as rigorous as it should be,

Gartner said. Results are often erroneous.

Burleson-Berkoben, in her long saga, has found the same problem with

awareness.

As she battled the pain and weakness over the years, she had a bulls-eye

rash appear intermittently on her upper arm. When it showed up again this

year, she got tested for Lyme with positive results. Her doctor at the

time put her on a month's dose of antibiotic, but refused to continue

therapy beyond that, even though Burleson-Berkoben's symptoms had not

improved

When told the therapy would stop, Burleson-Berkoben broke into tears in

the doctor's office.

" I was in a lot of pain, and I started crying, " she said. " What is it

you're not telling me? " she said the doctor asked, implying her problems

were emotional. " Is there a problem at work? Did you have a fight with

your husband? "

She searched for another doctor to help her without success. This summer,

she started long-term antibiotic treatment with a doctor in Hermitage,

Mercer County, whom she refused to identify, and hopes she'll finally get

well.

Another Hermitage doctor also offers long-term treatment; they're the only

two in Western Pennsylvania who treat chronic Lyme. Patients fly in from

around the country to see them.

Neither would discuss his therapy, which highlights the big debate about

chronic Lyme.

The latest research

A study published July 12 in the New England Journal of Medicine found

that Lyme disease can be prevented in patients who receive a one-dose

treatment of an antibiotic given soon after the bite by an infected tick.

That same issue published another study that debunked the use of

aggressive treatment with both oral and intravenous antibiotics on people

suffering from the long-term effects of Lyme. This study bolsters the

views of Dr. Steere, the renowned researcher with the New England

Medical Center who identified Lyme. He has concluded that many of these

folks with chronic Lyme no longer have the bacterium in their system --

which might respond to antibiotic treatment -- or never had the disease at

all.

Even before the publication of this study, national guidelines were

published limiting antibiotic treatment.

Steere's view has drawn the wrath of chronic Lyme patients who just want

to get well, and they've sought out doctors who will give them that

aggressive treatment.

But those doctors who don't follow established protocol are beginning to

come under fire from state medical boards -- the most publicized involving

a Long Island, N.Y., physician, Dr. ph Burrascano, last fall.

Although a spokeswoman for the Pennsylvania secretary of state's office

was unaware of any similar investigations here, the few doctors who treat

chronic patients are operating underground as much as possible.

" I'm finding that the doctors who advocate long-term antibiotic treatment

tend to have relatives who have Lyme or, in a few cases, have Lyme

themselves, " said Ken Mott, head of a national Lyme advocacy group Ticked

Off and Fed Up in Gettysburg, Pa. " They're more sympathetic to it. They're

not inclined to treat it as some psychosomatic aftermath. "

The controversy hasn't dissuaded Burleson-Berkoben from seeking that

treatment.

" I'm seeing results, " she said. " I feel like I'm getting better. "

For more information

South Hills Lyme Disease Support Group, meets 7:30 p.m. first Thursday of

each month in the Castle Room, second floor of the Bibro Building

at Jefferson Hospital. Call Tammy Burleson-Berkoben at 412-751-4497.

Lyme Disease Support Group, meets 7:30 p.m. second Monday of each month at

the Calvert United Presbyterian Church, 94 Locust, Etna. Call Ruth Ann

Tobin at 412-621-4918.

Lyme Disease Foundation, One Financial Plaza, Hartford, Conn., 06013-2601.

(860) 525-2000 or a 24-hour hot line, (800) 886-LYME. www.Lyme.org .

Lyme Disease Association, P.O. Box 1438, , N.J., 08527. (888)

366-6611. www.lymedisease

association.org

Lyme Disease Network of New Jersey, 43 Winton Road, East Brunswick, N.J.

08816. www.lymenet.org

American Lyme Disease Foundation, Mill Pond Offices, 293 Route 100,

Somers, N.Y., 10589. www.aldf.com

Centers for Disease Control and Prevention, www.cdc.gov . Click on Health

topics A to Z, then click on Lyme disease.

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