UPDATE on FSU Quarterback who got Lyme - controversial dx

Discussion in 'Fibromyalgia Main Forum' started by victoria, Nov 26, 2005.

  1. victoria

    victoria New Member

    Here's some background:

    When Sexton was found last June wandering down the street disheveled, claiming to be God, etc., most thought he was on drugs or having a psychotic episode;

    class/teammates had reported he had acted somewhat strangely at times in the months before last June. No one initially couuld find anything wrong with him at all, and he had taken no drugs.

    On the advice of family friends, he saw a LLMD in Penn. where he was finally dx'd with Lyme; there was a lot of controversy about the dx and treatment (IV abx)- there were a lot of doctors who wrote in to newspapers in Fla about how that could NOT be the correct dx...

    but guess what, after treatment, he is now back in school.

    The Florida Times-Union
    November 24, 2005

    ACC EXTRA: Sexton on recovery road

    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.

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    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 coach.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 approaching 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 smile 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.

    This story can be found on Jacksonville.com at
    http://www.jacksonville.com/tu-online/stories/112405/col_20388123.shtml.
  2. Greeneyes2

    Greeneyes2 New Member

    This is very interesting reading. The description of the symptoms is so very familiar. I have been tested for lyme and it came back negative. I think after this I need to find out what test was used and if necessay pay for the better one, or see if there is a LLMD anywhere close.

    Thanks again.

    Gentle Hugs,
    Denise
  3. karatelady52

    karatelady52 New Member

    Thanks so much for the article

    I lived in Tallahassee in my 20's, had season tickets to all the FSU games and had chronic lyme disease at the time and wouldn't find out for 30 more years!

    At that time I was having chronic IBS that was so debilitating I could hardly sit through a football game.
    I also had heart palpitations and neck and back pain.

    I sure hope this young man will help out our cause to get the medical field educated on this important disease.

    Sandy

  4. ldbgcoleman

    ldbgcoleman New Member

    I hope everyone here reads this. You do not have to accept the FM or CFS diagnosis. There is an underlying cause so find a Dr who can help you. I luckily don't suffer from Lymes but active EBV and Mycoplasma for me are treatable. If not for DR Bullington at the Atlanta FFC I would be in the bed instead of decorating! Please understand that there is help out there and do whatever it takes to get it!

    Good Luck Lynn
  5. victoria

    victoria New Member

    and bumping this up again
  6. Dalphia

    Dalphia New Member

    and I hope you will keep everyone here updated on his progress. This certainly gives us hope for a brighter days.
    I'm sure this young man had quite a struggle to get to the point he is today and may God Bless Him.

  7. ldbgcoleman

    ldbgcoleman New Member

    This is a must read!