Borrelioosiin sairastuneiden henkilökohtaisia kokemuksia taudista ja sen hoidosta.

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Liittynyt: Ke Tammi 21, 2009 14:16


Viesti Kirjoittaja soijuv » Ma Huhti 20, 2009 10:43

Jalkapalloilija Wyatt Sexton sai yhtäkkiä psykoottisia oireita. Ensiavussa lääkärit sanoivat etteivät tiedä oireiden syytä. "Olemme tehneet kaikki mahdolliset testit eikä niissä ole mitään mikä selittäisi Wyattin oireet."

Perheen ystävät kehottivat heitä teettämään borrelioositestin. "Onneksi uskoimme ystäviämme sillä muutoin emme olisi saaneet tietää mikä Wyattin oireet aiheuttaa. Testi vahvisti ystävien epäilyt oikeaksi. Wyattilla on borrelioosi. Borrelioosi voi aiheuttaa erilaisia mielialahäiriöitä, kognitiivisia ongelmia, päänsärkyä, halvauksia, vapinaa jne. Borrelioosi diagnosoidaan usein virheellisesti fibromyalgiaksi, krooniseksi väsymysoireyhtymäksi, lupukseksi, kaksisuuntaiseksi mielialahäiriöksi jne.

Perheen ystävä Sandy Lanford sairastaa itsekin borrelioosia. Hänet diagnosoitiin virheellisesti 20 vuoden ajan. Vasta 4 v. sitten hän sai borrelioosidiagnoosin. Lanford perusti alueelleen tukiryhmän koska hänen mielestään muutoksia saadaan parhaiten aikaiseksi koulutuksen ja tiedottamisen avulla. Valitettavasti alueellamme ei ole yhtään "borrelioosin erikoistunutta lääkäriä (LLMD)". Meidän täytyy matkustaa toiseen osavaltioon saadaksemme asianmukaista hoitoa."

Tri Swami aloitti Wyattin hoidon 3 kuukauden suonensisäisellä antibioottihoidolla (keftriaksoni). Wyatt oli onnekas. Ilman oikeaa tietoa ja hoitoa sairaudesta, hän olisi saattanut joutua viettämään lopun elämäänsä psykiatrisessa sairaalassa. Meidän oli oltava jokaisessa vaiheessa erittäin päättäväisiä sillä sekä lääkärit että vakuutusyhtiöt vastustivat päätöksiämme. Wyattin tauti ehti kroonistua eikä taudin täydellisestä paranemisesta ole varmuutta. Päämääränä on kuitenkin saavuttaa oikealla hoidolla oireeton tila. Omaa tilannetta täytyy tarkkailla koko loppuelämän ajan. Mikäli oireita ilmaantuu, on antibioottihoito aloitettava välittömästi uudelleen. ... 8123.shtml

ACC EXTRA: Sexton on recovery road
Support key as former FSU starting quarterback battles Lyme disease.
By BOB THOMAS, The Times-Union

TALLAHASSEE -- The simple pleasures of parenthood -- a son's smile of satisfaction after passing a test, siblings chasing each other around the house, or playing guitar -- are cherished more than ever in the Sexton home.

Five months ago, Joy and Billy Sexton had no idea what the future held for their son, Florida State quarterback and honors student Wyatt Sexton.

Today, the entire Sexton family will share the traditional Thanksgiving dinner with the FSU football team while reserving some private time to count their many blessings. Back in school and practicing with his teammates on a limited basis, Wyatt Sexton is recovering from a frightening battle with a disease that led to his nearly month-long confinement in a Tallahassee hospital ward. Countless tests and treatments failed to reveal the source, or provide a cure, for Sexton's mysterious illness, which came to a head following a June 13 psychotic episode requiring a police intervention.

"I truly believe that God had his hand in this in the beginning because there were so many doors that were closed that had to be opened," Joy Sexton said. "From the beginning, going into the hospital, the emergency room doctors said, 'We've run all the tests. There's nothing here that causes this type of behavior. You're in for the long haul because your son is sick, and I don't know what it is.'"

"That was a nightmare," said Billy Sexton, who had been looking forward to spending his 29th season as an FSU assistant football oach with his son as the starting quarterback. Thanks to the persistent efforts of longtime friends -- Ernie and Sandy Lanford, and Lance and Heidi Scalf -- the Sextons agreed to have their son tested for Lyme disease.

"If it hadn't been for those four people that we're very good friends with, we wouldn't have known to go in that direction," Billy Sexton said. "I'm eternally grateful." That test confirmed the suspicions of the two families, who recognized the symptoms because their lives have been touched by the spirochete bacteria often transmitted by a tick bite. When untreated, the disease can lead to symptoms ranging from rashes, headaches and lethargy to tremors, facial paralysis, mood swings and cognitive disorders. For the first time since their son's diagnosis, the Sextons agreed to an exclusive interview with the Times-Union, hopeful that their story will bring greater awareness to a disease that's often misdiagnosed as fibromyalgia, chronic fatigue syndrome, lupus or bipolar disease. Wyatt, however, declined to be interviewed for this story. According to his mother, he remains "pretty raw" about published accusations of alleged drug abuse following the June 13 episode, which came on the heels of his return from the Bonaroo Music Festival.

"Hopefully, over time, he will realize that he's in a position where he can bring a lot of great attention to this disease and hopefully be able to help get more money for research and better treatment and better diagnosis by the doctors," she said. That's the problem the Sextons and many other have encountered. "Four years ago, I was diagnosed with the disease after it was misdiagnosed for 20 years," said Sandy Lanford, the wife of former Florida State golf coach Ernie Lanford. Lanford organized a support group -- Life Lyme -- in
Tallahassee for the some 400 people she said are infected with the disease, "because I thought education was the way to change things".

"The sad thing is we don't have a Lyme-literate doctor in town and we have to travel out of state."

Ernie Lanford and Lance Scalfa accompanied Joy, Wyatt and his sister, Leslie, on a chartered plane to Hermitage, Pa., home to doctor Chandra Swami. An expert in the field of Lyme disease, Swami put Sexton on the road to recovery, ordering a 12-week course of the antibiotic rocephrin, to be administered daily intravenously. "[Wyatt] was very, very lucky," Sandy Lanford said. "He could be in a psych ward the rest of his life if they hadn't learned what he has."

Within a few weeks, Sexton began to show signs of improvement on a daily basis, telling his father what he described as a "brain fog" was lifting. It hasn't been an easy recovery on a number of fronts. "There were doors that were closed," Joy Sexton said. "You had to be extremely persistent and not accept no as an answer from many people through this process." Resistance came from some in the medical community as well as insurance companies, many of which will not pay for the extended antibiotic care required.

"Many people that have talked to me have lost their jobs, lost their health, lost their house, lost their marriage, lost their businesses," she said. "It's devastating. If the doctor tells you that you need this treatment and the insurance companies won't pay for it, then you'll do whatever you've got to do to get the treatment. We did and other families do also. When you have chronic Lyme and you don't get the right treatment [or] when the insurance companies won't pay for it, you either have to stop it -- many people that have stopped it die -- and it is devastating." Throughout the ordeal, the Sexton family was receiving letters, e-mails and telephone calls of support, many from people suffering from Lyme disease. "They call each other Lymees," Joy Sexton said. "Hundreds of Lymees wrote letters, called, sent e-mails, saying, 'I've had it. I went through it. There's life in the end of the tunnel.'" Many wrote personal letters of encouragement to Wyatt. "I'd go out to the mailbox to get the mail and a car with a stranger in it would roll down the window and say, 'How's Wyatt? We're praying,'" she said. With the start of the school year pproaching and his health improving, Wyatt convinced his parents to allow him to enroll as a part-time student. He registered for micro- and macro-economics courses. The Sextons remember the countless hours Wyatt spent studying for his first exam about a month into the school year. The disease had compromised his short-term memory, but not his determination. "When he got out of this car he had this smile from ear-to-ear and I broke out in tears," Joy said. "You don't realize that his processing had really slowed down because of all the infection and he knew it. ... So when he drives up and he has this mile on your face, you cry. I hadn't asked him how he's done on a test in 10 years."

It was just one of many small battles Wyatt has won on his way to recovery, though there is no cure for the disease when it has reached the chronic stage he suffers from. "My understanding is that with the appropriate treatment, which is tailored by your symptoms and your degree of infection, you can become symptom-free," Joy said. "But you have to be in touch with yourself so that when the symptoms start coming back, if they do -- and most people I've talked with [say] they do -- you have to go back on the antibiotics to make sure that the spirochete doesn't become rampant again." According to his parents, Wyatt's recovery has also been fueled by his desire to return to the FSU football team in a full-time capacity next season. By working out in the weight room, he has already regained the more than 20 pounds he lost and has resumed running and throwing with teammates on a limited basis. "He has a goal to come back and compete, to be the starting quarterback at Florida State, the position he left before he had this," Joy said. "I think he's well on his way." In the process, he has brought much-needed attention to a disease Lanford said is reaching "epidemic" proportions. Her research, which will help support a state legislature bill to aid those suffering from Lyme, has uncovered approximately 1,800 diagnosed cases of the disease in Florida alone. Wyatt Sexton's case will undoubtedly put some teeth in that legislative cause., (850)224-7515, ext. 14

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