Borrelioosiin sairastuneiden henkilökohtaisia kokemuksia taudista ja sen hoidosta.

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Viestit: 1820
Liittynyt: Ma Tammi 26, 2009 23:13


Viesti Kirjoittaja Bb » To Tammi 29, 2009 13:29

Stephen on 54-vuotias muusikko, jonka oireet alkoivat v. 1997 kun häntä puri punkki hänen kotipihallaan.

Alussa hän sai antibioottia kuumeeseen mutta pian hoidon loputtua hän tunsi kovaa kipua silmän takaosassa. Dg: borrelioosin aiheuttama aivokalvontulehdus tai aivoturvotus. Hän sai IV antibiootteja ja kipu hävisi. Myöhemmin kesällä silmävaivat alkoivat uudelleen. Nyt vasen silmähermo turposi. Vähitellen näkökyky alkoi heiketä kummastakin silmästä. Lisää antibiootteja. Lääkäri ei uskonut silmäoireiden johtuvan borrelioosista vaan syövästä. Biopsia ei kuitenkaan vahvistanut syöpädiagnoosia.

Stephen ei kykene tekemään töitä ja sairastelu on vienyt hänet taloudellisiin vaikeuksiin eikä hän kykene huolehtimaan vaimostaan eikä 6-vuotiaasta lapsestaan. Hän on alueellaan tunnettu muusikko joten ystävät ovat auttaneet häntä taloudellisesti mm. hyväntekeväisyyskonsertin muodossa.

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Teacher faces health problems with courage

By Deborah McDermott

Complete Maine News Index

There are, Stephen Bracciotti says, many people in the world are far worse off than he is. Still, when life socks you between the eyes, as it has him, you are forced to take stock and count blessings when you least expect them.

The well-known York, Maine, musician and guitar teacher has been dealing since early summer with a thus-far undiagnosed ailment that has left him legally blind in one eye and with declining vision in the other. Bracciotti, 54, has had spinal taps, CAT scans, intravenous antibiotics, an eye biopsy. He sees neuro-opthamologists, infectious disease specialists, neuro-oncologists.

Self-employed, as is his jeweler wife, Lauren Pollaro, he is facing upward of $100,000 in medical bills not covered by his high-deductible, catastrophic insurance policy that is proving woefully inadequate. He has to increasingly rely on others for simple daily activities.

And yet, he says, this has been one of the most enriching times in his life, and has changed forever how he will view himself in the future.

Bracciotti said his health problems probably began in June with a deer tick bite. Certainly, thats when he began to track his problems. He had already had Lyme disease in 1997, and was familiar with its symptoms. Within days, he was running a fever and was put on antibiotics. Not long after, he felt intense pain in the back of his eyes. The diagnosis: Lyme meningitis, or swelling of the brain. More intense and intravenous antibiotics followed, and the pain subsided.

In early August, however, he noticed something wrong with his vision - a shimmering obstruction, like an amoeba, he said, on his left eye. A neuro-opthomologist from Massachusetts Eye and Ear Infirmary said his optic nerves were swollen. By the end of the month, his eyesight was rapidly diminishing. And his right eye was beginning to be affected. He was seeing a Lyme specialist in Boston by then, who - after a spinal tap and more intravenous IV - told him he did not think the loss of vision was caused by Lyme.

Thats when, in September, doctors began to suspect optic lymphoma - cancer. In early October, a biopsy was conducted and vitreous fluid from the eye extracted. It was tested - and no cancer was indicated. However, Bracciotti said, the test is right only 30 percent of the time. Tha where matters stand now, as he wonders whether he should have a more invasive operation where a slice of optic nerve is taken.

"My gut tells me it ist cancer - because I don´t want it to be," Bracciotti said.

Bracciotti, who has been on the music faculty at Berwick Academy and the Rivertree Center for the Arts in Kennebunk, and has a private studio in York , had to stop working in September, when he could no longer see well enough to teach.

"The hard part is that I pride myself on looking at my students technique. I want to be attentive and I cant," he said.

The most difficult and the most rewarding aspect of his situation, he said, is how vulnerable he now feels. Difficult, because he cant take care of his wife and child, 6-year-old Adrian, as he once did, working around the house, paying the bills. Difficult because "its hard for me to be beholden to others."

"Im struggling with being overwhelmed. Im struggling with getting my house in order - literally and figuratively - in case I lose more of my sight."

But it is rewarding, too, to realize how much people care about him.

In late October, local musician Joyce Andersen dedicated her last Sunday night show of the season at Inn on the Blues in York Beach to Bracciotti. She became involved after receiving a call from South Berwick musician and Berwick Academy teacher Chip Harding, who has known Bracciotti for years.

Among those performing that night in addition to Andersen and Harding, were Kevin Farley, Mike Rogers, Joe Rogers, Kent Allyn, Tom Richter and Andersen´S husband, Harvey Reid.

"We know how hard it is to be a musician with expensive and inadequate health insurance," Andersen said. "But we can know what its like to be going through what Stephen and his family are going through. It makes you want to do something."

The concert raised $2,800, which was funneled into a nonprofit organization started by Harding called Healing Vision. Healing Vision was formed specifically to receive donations from those who want to help out Bracciotti and Pollaro.

"That a couple who is doing everything right, who is working hard to be productive in their fields, to be good parents, to be good citizens can be hanging by a thread like they are, in the wealthiest nation in the world, is pretty pathetic," Harding said.

Bracciotti is overwhelmed by the outpouring of help he has received, from musicians, friends, family, even total strangers.

"Ive shed more tears in the past three months than I have in my entire life," he said. "I keep thinking how can I possibly deserve this?

"My hope is that when I am whole again, I know I will be helping people in some way," he said. "Ive always been a compassionate person, but I didnt take the time. If I can retain enough vision so I am not completely blind, I want to work with people in a similar situation."

In the meantime, he is taking things one day at a time. He practices Chi Kung, a form of Tai Chi, every morning, and meditates every night to relieve the stress.

And he waits.

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