1. John Snow on Broccoli shows benefits for epidermolysis bullosa simplex
    John Snow John Snow United States says:
    June 24, 2009 at 7:04 PM

    I have EBS. In 1989 I stumbled upon a combination of Dilantin (100mgXd) plus heavy doses of niacin as an effective treatment to raise the threshold at which this condition manifests. Before, when I experienced trauma to my feet and developed "hot spots," I invariably had blisters the next morning. Now--and if I DO NOT ABUSE THE THREShHOLD-- even though I have the hot spots, I awaken the next morning with unblistered feet, ready for a new day. What I'm getting, is the ability to do much, much more in physical activity without blistering. My brother, my daughter and grandson -- all affected -- have had the same experience.

    A WORD OF WARNING. Those trying this treatment will often become elated with the results that the do abuse the threshhold and get a much deeper and more painful blistering. To live with EBS successfully is to learn to manage one's lifestyle.

    These results are consistant with the findings of researcher Jo David Fine and his research on the dystrophic form of EB. Fine has simply misread his results (if any) with EBS. ANY IMPROVEMENT IN ONE'S ABILITY TO LIVE WITH MORE LIBERTY is a definite gain.

    Reply
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