CLAIRE: 18 ERI LÄÄKÄRIÄ ENNEN DIAGNOOSIA

Borrelioosiin sairastuneiden henkilökohtaisia kokemuksia taudista ja sen hoidosta.

Valvojat: Borrelioosiyhdistys, Bb, Jatta1001

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Bb
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Liittynyt: Ma Tammi 26, 2009 23:13

CLAIRE: 18 ERI LÄÄKÄRIÄ ENNEN DIAGNOOSIA

Viesti Kirjoittaja Bb » Ke Tammi 28, 2009 13:22

Claire sairastui borrelioosiin 14-vuotiaana (todennäköisesti ratsastusharrastuksen myötä): nivelkipuja, muistihäiriöitä. Vasta hänen käytyään 18 eri lääkärillä borrelioositestit suoritettiin ja diagnoosiin päästiin. Hän sai IV antibioottihoidot, mutta hänellä on vielä jonkin verran oireita.

http://www.nj.com/living/ledger/index.s ... 135900.xml

Waltzing to wellness: Teenager bounces back from crippling Lyme disease to become a ballroom champ
Tuesday, January 11, 2005
BY MEG NUGENT

It's November in Puerto Rico and teenager Claire Bochenek is a ballroom dancing contestant in the Caribbean Dance Sport Classic.

The 18-year-old Netcong resident, dressed in a frothy, pink, ever-swirling gown, deftly glides across the floor with Peter Ingris, her partner and instructor, as he leads her in a Viennese waltz, then later, the tango, the fox-trot, a bit of swing and some Latin dancing.

Bochenek came home from her first-ever ballroom dancing competition with a first-place award in the newcomer category and a second prize in one event she entered as an advanced beginner.

Not bad for someone who took up "ballroom," as Bochenek likes to call it, only six months ago. Not bad for a young woman who's still recovering from a protracted, nasty case of Lyme disease that, for a time, cost Bochenek her health, her short-term memory and her sense of balance, robbed her of an entire school year at Lenape Valley Regional High School and forced her to give up her beloved sport of competitive horseback riding.

"There was so much I wanted to do," recalls Bochenek, "but I had absolutely no energy to do it."

Bochenek and her mother, Michele, believe it was the horseback riding she routinely practiced along wooded trails that placed her in close contact with deer ticks, which carry the bacterium that causes the potentially debilitating disease.

"She never had a rash," says Michele Bochenek, a recently retired investigator for the state Division of Criminal Justice. She was referring to a rash that sometimes appears with a case of Lyme. This rash can surface in the shape of a red bull's eye that surrounds the tick bite. In addition, the only tick encounter Claire Bochenek remembers was with a dog tick that was plucked from her scalp when she was 5.

But beginning at age 14, when she was in the eighth grade, Bochenek began experiencing symptoms she and her mother later realized were signs of Lyme. Then a straight-A student and a member of a coed soccer team, Bochenek started getting headaches and low-grade fevers. Volunteering as an altar server at her church, St. Michael's, in Netcong, Bochenek says, "I would go to kneel and my knees would hurt. The joint pain was killing me." She would get sprained ankles from inexplicably losing her balance during gym class.

There were other, more frightening symptoms. Toward the middle of her freshman year of high school, says Bochenek, "I couldn't remember what I had for homework. I couldn't remember how to do my homework."

Diagnosis can be elusive because Lyme can mimic other diseases and, as in Bochenek's case, victims don't always get that signature rash.

The Bocheneks consulted 18 doctors, including a medical team during a week of testing at the Mayo Clinic in Minnesota, before they got a definitive diagnosis of Lyme disease from an internist in Manhattan.

Bochenek's mother had begun to suspect Lyme disease, in part, because the staff at the Ringoes farm where her daughter went horseback riding suggested it as a possibility. Michele Bochenek began to question the doctors.

"I just kept asking everyone, 'Is this Lyme? Could she have Lyme?' And everyone said no," says the elder Bochenek. Medical professionals offered a variety of potential diagnoses, ranging from a possible tumor on her spine to Claire Bochenek's simply being an "adolescent female," according to her mother.

"It was frustrating," recalls the younger Bochenek. "I was so mad at all the doctors."

The Manhattan doctor, internist Stuart Orsher, was the only physician who ordered tests for Lyme disease, Michele Bochenek says. A week later, he called with the news that Claire Bochenek had Lyme. The diagnosis didn't bring much relief to the teen. Instead, she says, she felt suspense. Before the diagnosis, she "didn't know what would be the next thing," she said. "Now, I know what it is, but what are we going to do about it?"

Bochenek began to receive intravenous antibiotic treatments for her disease, while continuing to deal with sometimes worsening symptoms, including crushing headaches and continuing problems with her memory. "It got so bad during sophomore year, I couldn't remember how to get around the school. I needed a map."

Eventually, Bochenek decided to audit her sophomore classes so she wouldn't wreck her grade-point average. She also needed to shorten her class schedule, dropping four of her eight classes.

During her junior year, Bochenek went back to getting grades for schoolwork and received assistance from a class aide. She also coped by throwing herself into a broad range of activities as she received more intravenous antibiotics and her health and energy improved.

"I think if you find something you like enough and if it's something you want to do every day, nothing can really stand in your way," Bochenek says.

During her numerous trips into New York to see her doctors, Bochenek started going to Broadway shows. She saw "Les Miserables" 13 times, and a passion for musical theater was born.

She joined her school's color guard, becoming proficient in wielding flags, rifles and sabers. She took up trombone, playing in the school jazz and concert bands.

"I practiced all the time," says Bochenek. "I practiced the trombone three hours per day. I knew that if I forgot everything, I would be completely useless."

Acting and voice lessons followed, as did instruction in tap dance.

Last summer, Bochenek decided she wanted to pursue some kind of dancing. She and her mom drove by a studio in Byram that offered general dance classes in areas such as ballet and tap. But the place was closed.

"I decided that, since I was looking for a new kind of dance, why not ballroom?" says Bochenek, adding that her mother had taken ballroom dance lessons years ago. Besides, she thought, knowing ballroom could give her an edge in musical theater. "Most people who go into performance are really good at ballet, tap and jazz. None of them really know how to do ballroom."

She remembered seeing a ballroom dancing studio in Roxbury, which has since changed its name to the Arthur Murray Dance Studio. They drove by. It was open.

Bochenek discovered ballroom dancing was a natural fit for her. "It really clicked," she says. "The patterns came really easy to me." So easy that, within nine days, she moved from a beginners' class to one for advanced beginners.

"Claire is very talented," says Peter Ingris, who instructs Bochenek every day after school. "She picks it up very quickly and she's eager to learn new things. It's easy to work with her because she always wants to know more than the average student. She wants to study it, get a deeper understanding."

Because of her illness, Bochenek is catching up on the course credits she was forced to miss, and her graduation has been delayed until 2006. But she has big plans.

College, which once seemed unlikely because of the cognitive problems the Lyme disease caused, is back in her future. In addition to a theatrical career, Bochenek is also thinking about pursuing archeology or historical design.

She still feels the impact of Lyme disease.

"Some days, it's slow starting," Bochenek says. "But you just have to get up."

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