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  • #308034
    JOJO19551
    Participant

    Hi to all! I read a book several years ago about a woman with scleroderma who went to the NIH to be treated for scleroderma by using antibiotics. I believe the name of the Doctor was Dr. Brown. Does anyone know the name of the book? I would like to forward it to a new scleroderma friend. Thanks, Jo Ann

    #371022
    Woods1977
    Participant

    Hi,

    Is this the book you’re looking for?

    Scleroderma: The Proven Therapy that Can Save Your Life
    by Henry Scammell

    #371023
    JOJO19551
    Participant

    No, I found that one. This is a story about a woman who used minocycline to treat her scleroderma. Her book lead me to to the book you mentioned, as well as The Roadback Foundation. I probably bought 10 of her books for people I met with scleroderma and gave my own away as well. Thanks.

    #371024
    A Friend
    Participant

    @JOJO19551 wrote:

    No, I found that one. This is a story about a woman who used minocycline to treat her scleroderma. Her book lead me to to the book you mentioned, as well as The Roadback Foundation. I probably bought 10 of her books for people I met with scleroderma and gave my own away as well. Thanks.

    JoJo,
    You probably saw all these…[???]
    http://www.amazon.com/The-Scleroderma-Book-Patients-Families/dp/0195115074
    AF

    #371025
    JOJO19551
    Participant

    I did, thanks. I am unsure why it is not listed. It is a very inspiring story for a new scleroderma patient and why they do do antibiotics versus harsh drugs. Thank you. Jo Ann.

    #371017
    richie
    Participant

    Hi–Do you mean Pat Ganger–??
    Richie

    #371018
    JOJO19551
    Participant

    Hi Richie. I believe that is it. It is such an inspiring story which gave me lots of hope. Thanks.

    #371019
    richie
    Participant

    Hi

    I can certainly not only give you hope but tell you first hand that I am in complete remission from diffuse scleroderma and I really had a huge list of problems which over the years have all resolved —
    Richie

    #371020
    JOJO19551
    Participant

    Richie, me too. I still have crooked fingers. Any suggestions? I know you did but reserved.

    #371021
    richie
    Participant

    Hi Keep exercising your fingers flexing as much as possible –that takes the longest to resolve but mine did and yours will also !
    richie

    #371015
    Anonymous
    Participant

    @richie wrote:

    Hi

    I can certainly not only give you hope but tell you first hand that I am in complete remission from diffuse scleroderma and I really had a huge list of problems which over the years have all resolved —
    Richie

    Hi richie

    I’d like to read so many stories like yours. 😉

    how long did you take antibiotics?

    excuse the question maybe I’ve already read but I forget everything 🙄

    #371016
    richie
    Participant

    Hi Since 1999 –I still take the antibiotic cause when the scleroderma was active I was real sick and I dont want to risk a relapse –
    Still take 200 mg of the minocin brand daily —I take large doses of probiotic daily –have never had any issues due to the med –Only side effects were when I first started -lasted about two weeks –I was walking around retching –once it cleared up never bothered with any side effects at all !!!!!!!!!!!!!!!!!!!!!
    richie

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