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Thread: Wise Young: An opinion please..

  1. #11
    Senior Member willingtocope's Avatar
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    Well, there's the www.cpnhelp.org web site that has info on the bacteria. All you got to do is find a doctor to beleive it...

  2. #12
    from Section 16 in reference:

    Personality change in Multiple Sclerosis
    ...
    Stereotypic changes in personality in people with aggressive MS have long been recognized. ...
    These authors come to the conclusion that this personality change (which is, they say, characterised by elevated neuroticism and reduction in empathy, agreeableness and conscientiousness) is due to 'a neurogenic frontal lobe syndrome.' I think that the word which best sums up the character-changes is insouciance: a nonchalant lack of concern.
    Wow. That fits my wife to a T. I have long been frustrated that she has no ambition or willingness to stay free of skin issues, exercise even the slightest bit, eat at at least some fiber for bowel regulation, etc. She is not outwardly depressed, wanting to die, or angry. But she will make a big deal of meaningless things while virtually ignoring serious matters.

  3. #13
    Senior Member willingtocope's Avatar
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    Just an update...

    Saw my ne MS doc yesterday. He is aware of the Vanderbily Protocol (CPN) but says thats fairly old research and unproven. Says to his knowledge, Epstein-Barr virus is the new suspect, but has no ready treatment. He does have some hope for the research into the "anti-lingo" drugs that may actually regrow mylin.

    Hmmm...

    Since, by coincidence, I've seen two of his partners in the past...one in 2006, the other in 2009 with only slight spasticity in my left leg...and their reports on MRI's done at the time said nothing about Sclerosis, he is puzzled by SPMS four years later. he's going to continue to collect and review records from all the other places I've been, and we'll talk again.

    In the meantime, he had me talk with his MS Advisory nurse and she's going to look into getting me some "quality of life" improvement.

  4. #14
    The longer we live with this condition, the more important quality of life improvements become - hope the nurse turns out be a good resource in that department.

  5. #15
    Senior Member willingtocope's Avatar
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    Now that the forum software is fully functioning again, I went searching for this thread. It been almost a year!

    Much has happened. The big news is...I've tried other neuros and even some infectious disease specialists. They all refused to get involved. So, I've decided to treat myself (yeah, I know).

    Using the guidelines at www.cpnhelp.org I started with N-Acetyl-Cysteine. Reaction was notable. My symptoms are by no means gone, but there has been slight improvement.

    I started the antibiotic treatment a week ago. Again, reaction seems to be what was described (...the "kissed by a dementor" feeling...).

    We'll see where it goes from here...

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