Darkness to Light–my journey with AP

[vonni]

I am 58 years old and my diagnosis is systemic scleroderma.  I began having symptoms in 5/09 of tingling in my hands, followed by edema (swelling) in my hands and lower extremities.  Some mornings, I would wake up with the right side of my face swollen.  This continued until mid 9/09, when the swelling resolved followed by tightening and fibrosing of the skin on my hands, forearms, anterior thighs and lower extremities. Some mornings, I would wake up and when I got out of bed, I felt like my skin was burning.  I had no energy and spent much of my day in the recliner.  I don't know how I managed to continue working, but business had slowed down due to the economy and it was a blessing in disguise.   I was referred to a rheumatologist and did eventually see 3 different ones, who had nothing more than “palliative care” to offer (i.e. immunosuppresant therapy or stem cell transplant).  I was advised that I had a very aggressive case of systemic scleroderma.  I went to a scleroderma center in Chicago and was advised my skin score was 27 on 11/6/09.  I declined Cellcept.  I had already scheduled an appt. with my AP physician for 11/16/09.   I had previously researched treatment options and stumbled upon this website and purchased the two books by Henry Scammell.  As an RN, I was initially skeptical because AP was not accepted as traditional therapy by the medical community.  Once I finished reading the books and the testimonials on this site, I was convinced that AP was the only viable treatment option.  This was the best decision I ever made.  I started AP on 11/16/09 which included 5 days of IV Clindamycin BID followed by Minocycline 100 mg BID.  My condition at the time I started AP was horrible–I had tachycardia, dyspnea (shortness of breath), dysphagia (difficulty swallowing), and the pain that goes with fibrosing skin. My hands were beet red, with the right side of my body more affected than the left side. The scleroderma had spread from my upper extremities and legs to include my abdomen, face and neck.  My upper lip had contracted as had my mouth opening.  All of this has resolved.  The only residual I have now is some stiffness in my hands and fibrosed skin on the dorsum (back of the hand), and minor stiffness in my knees (I went through about 2 months of pain in my knees, hips, and shoulders that felt like a bad case of arthritis after being on AP for 2 months).  My AP physician said to be patient, the hands take longer.  I did also start to have problems with my intestines and started on probiotics which have helped tremendously.  This truly has been a journey from darkness to light.   

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