I have had Systemic Scleroerma for 2 1/2 years. Iam told the disease progresses for 5 years. Here is my story: I turned 58 on 8-26-06. I went to the beach carrying my own backpack chair (fully loaded), another bag, and a large hat. I walked thru the sand in my bare feet and had some friendly banter with my husband, over where to put down our belongings. ONE YEAR AGO, I was almost bedfast. I wore gloves 24/7, hands smeared with vasoline to ease the pain. A good day for me was to make it downstairs to my recliner to watch TV. The skin on my arms, hands and face was hard like a porcelain doll. I fell down the steps. I could not walk properly as the disease ws in my feel and legs. I was pretty much told I would die. I asked my doctor for the antibiotic protocol (AP) after I read the book by Henry Scammel. The doctor said NO and got mad, stating that he would not treat me if I was going to continue down that path. I went to a different doctor in August, 2005. I started AP (Minocyclene 100 mg 2 X per day)in October. I am also doing another treatment which he started first,(Photopheresis). Some statistics show that neither of these 2 treatments work. Well, I have met 2 ladies in full remission from AP. I know another in full remission from Photopheresis. I’m the only one I know who is receiving both treatments. I still have some stomach bleeding (watermelon stomach) but my esophagus and lungs appear to be good. My Hemaglobin is 12.3 which is normal for me. The disease is gone from my feet, legs, face and 1/2 of my arms and hands. My friends, doctors and family say I am a walking miracle! My very close friend just died of this terrible disease. She was just getting read to start the AP but it was too late. PLEASE SPREAD THE WORD!
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