In July of 2012 I woke up with numbness extending from my elbows to hands that quickly became painful. I normally ran 4 miles a day and within 2 months I was unable to even speed walks without pain and a racing heart. My blood pressure which had been completely normal all my life, skyrocketed to 195/105 and my fingers became so swollen I couldn’t clap or shake hands without wincing. After many months of tests and questions, my doctor referred me to a rheumatologist who immediately diagnosed me with limited systemic scleroderma in January of 2013. I got a second opinion which confirmed it. She strongly suspected diffuse due to how quickly I had accumulated symptoms and their level of severity. By this time, I had tendon friction, brain fog, severe raynauds, severe pain in all my joints, tightening skin across my face, little sleep due to pain, some swallowing issues…..even my teeth were beginning to feel loose. It was just incredible considering I was completely healthy at my physical in June of 2012.
I ‘stumbled’ upon roadback.org during an online search regarding MTX and side effects. I am convinced to this day, God divinely intervened to make roadback ‘pop-up’ at the top of my feed. I read everything on the site. Dr. Thomas Brown and his research completely resonated with me and I reached out to Maz, Christine and others who helped me take the first steps toward healing. After all, my rheumatologist told me she would “treat symptoms as they arise”. Hers was a hopeless and discouraging prognosis. I asked her to consider treating me with AP. She refused calling it ‘smoke and mirrors’ and ‘baseless’. I found a doctor in my area who was treating his patients with AP and at my first visit he told me his goal was to “make me well”. The treatment goals could not have been more different!
We went aggressively after SD. I did 5 rounds of IVs in 2013 in addition to MINOCIN. The experience was much like peeling away layers of an onion. A symptom would ‘disappear’….then I would feel the same for awhile until another symptom disappeared. It has continued like that, but my most notable progress was made in the first two years.
I did experience some herxing, and some seeming ‘plateaus’ but, I began to feel pretty normal by then.
Fast forward to July of 2018 and for the first time in 6 years my ANA was NEGATIVE! I just returned from a 50 mile strenuous hiking adventure in Banff National Park! It is wonderful when my children ask me if I “still have” scleroderma. I can’t even begin to tell you how much that means to me.
I live virtually symptom free today and for that I am deeply grateful to Dr. Brown, this forum and all who have helped an encouraged me in my personal journey to healing.
AP not only gave me my life back, it gave me a passion to help others struggling with scleroderma and other autoimmune diseases that can be treated with AP. I’ve been ‘working’ my own little corner of the world here in MN doing what I can. It is hard to believe that AP for SD is still not accepted as a main stream treatment option. After all, it is abundantly clear that conventional treatment has a demonstrably poor track record.
I hope my story will encourage anyone new to this protocol. Three key ingredients to healing are patience, perseverance and people. Be sure you connect with people here, myself included as we want to cheer you on!
May God richly bless all who read this.