I'm not a storyteller, but I will try to put into words my trials with Scleroderma and my success with the antibiotic protocol.
While on vacation in Feb/95 I would wake during the night with tingling hands. I would shake it off and go back to bed. When I returned home in May, my family doctor sent me to a specialist, and I had an operation on both my hands, 3 months apart, for carpal tunnel. In Oct/95 suddenly my whole body was sore, I couldn't do anything, hardly move. My family doctor sent me to a rheumatologist, who took one look at my hands and diagnosed scleroderma. I had never heard of this and wasn't too alarmed. He didn't say much to me except that there was no cure for it, and gave me penicillamine. I had all the necessary tests to see if this was right, and it was. I took penicillamine on and off for about 2 years, stopping in between because of protein in the urine, and also I went south for the winter for 4 months.
One of my sons is a computer engineer, and he gave me a computer and 'the works' with it. After I got on the internet, I looked up all I could find on scleroderma, and then I got frightened. I would not take any more pencillamine, and hadn't been on any NSAIDs for pain. I found the rheumatic site and copied all the information. After trying to find a doctor to give me the antiobiotics, I finally convinced my family doctor to give it to me since my son took tetracycline for 3 yrs. for acne. She gave me the minocycline and clindamycin (oral). I took all the lab tests before I started. Shortly after I started the antiobiotics in Nov/98, I went to Dr. Armstrong in Ottawa (courtesy of Donna's info (mousepotatoes)) and she started me on the IVs. I do go away a lot, and in between the IVs I took the clindamycin orally.
Before I started the antibiotics, I could hardly move my body parts. I could not raise my arms over my head, couldn't shampoo my hair, lift a cup, wash between my toes as my skin was so tight on my hands and feet, and many more problems. After a while I started to improve. I can now, after a year, do the above things again. My hands are slightly curled, but I can now do all the necessary heavy chores around the house.
I stopped going to see my old rheumatologist when he wouldn't prescribe the antibiotics for me, but I now have a new one just in case I may need her. She is very nice, sympathetic but does not approve the antibiotic protocol, but is humoring me, and keeps in touch with my family doctor.
I also have Raynauds, a hiatal hernia and IBS, and am now getting wrinkles (would like to do without those though) and I can see the veins in my hands and feet as the skin is softening. I didn't have too many problems on the antibiotics, with hardly any flareups. I have been very fortunate. I just got back from California in May and started the IVs again.
My SED rate went from 28 to 25 in one year. My ANA went from 1.160 to 1.80. My family doctor was so pleased with the results, she phoned me herself the day she got the test results back and she gave me a script for the minocycline and clindamycin for another year. She also kept all the notes I copied from the rheumatic site.
One of my other sons is an optometrist, and one of his patients said she had scleroderma. He told her what I was doing with the antibiotics, and she called me right away, went to her family doctor and he gave her the minocycline and clindamycin, no questions asked. He didn't do any lab tests on her though, he said he would just rely on how her body would treat her. She is going to phone Dr. Armstrong to see her. I will also tell anyone else about the antibiotics, if they are willing to listen. I am so grateful that I found the rheumatic site, and for all the help from Chris, Ethel, Donna and all you other people for all your encouragement and information. This site is so informative, kind and sympathetic to our needs. Thanks so much.
Emily, antibiotic protocol since Nov/98
You can reach me at firstname.lastname@example.org