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February 3, 2014 at 8:11 pm #308034JOJO19551Participant
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
February 3, 2014 at 8:30 pm #371022Woods1977ParticipantHi,
Is this the book you’re looking for?
Scleroderma: The Proven Therapy that Can Save Your Life
by Henry ScammellFebruary 3, 2014 at 8:53 pm #371023JOJO19551ParticipantNo, 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.
February 3, 2014 at 9:06 pm #371024A FriendParticipant@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
AFFebruary 3, 2014 at 9:13 pm #371025JOJO19551ParticipantI 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.
February 4, 2014 at 9:42 pm #371017richieParticipantHi–Do you mean Pat Ganger–??
RichieFebruary 4, 2014 at 9:51 pm #371018JOJO19551ParticipantHi Richie. I believe that is it. It is such an inspiring story which gave me lots of hope. Thanks.
February 4, 2014 at 10:03 pm #371019richieParticipantHi
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 —
RichieFebruary 4, 2014 at 10:06 pm #371020JOJO19551ParticipantRichie, me too. I still have crooked fingers. Any suggestions? I know you did but reserved.
February 4, 2014 at 10:13 pm #371021richieParticipantHi Keep exercising your fingers flexing as much as possible –that takes the longest to resolve but mine did and yours will also !
richieFebruary 5, 2014 at 11:49 pm #371015AnonymousParticipant@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 —
RichieHi 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 🙄
February 6, 2014 at 1:12 am #371016richieParticipantHi 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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