Patient Stories
Scleroderma
Every patient’s journey is unique, but no one should have to travel it alone. The stories shared here come from individuals living with a variety of rheumatic and inflammatory diseases who chose to explore antibiotic protocols as part of their treatment journey. Some experienced gradual improvement, others dramatic recoveries, and many found hope simply by connecting with others who understood what they were going through. These personal experiences are shared to educate, encourage, and remind you that every journey is different and should be discussed with your healthcare provider.
If you’re looking for more than written stories, we invite you to join the Road Back Foundation Private Facebook Community, where you can connect directly with patients in real time. Whether you’re just beginning to research antibiotic protocols, preparing to start treatment, actively undergoing therapy, or years into recovery, you’ll find a welcoming community ready to share their experiences, answer questions, and offer practical support.
Donna’s Story—Defying a Scleroderma “Death Sentence”
My name is Donna Celeiro, I am 71, and live in Saugerties, New York (USA). I have had systemic scleroderma for 50+ years; it took me an unbelievable 27 years of searching and trying countless doctors/hospitals/tests/medications and listening to numerous thoughtless/sarcastic/insulting remarks about seeing a shrink, I am doing much better than the “death sentence” I was originally given in 1997 by my first rheumatologist.
Janet’s Story—Peeling Back the Layers of Chronic Illness
In 2002, the good health I had experienced all my life was about to change. I noticed a bump on my chest after attending a country wedding — it was like some kind of an insect bite. It began to change its form and started to resemble a ringworm infection. I also began to have a chronic tickle in my throat and felt lethargic. A topical treatment did not resolve the lesion plus it started to change forms and began to look like a couple of large papules. The skin specialist thought it looked like a spider bite, but when the biopsy came back, suggested Scleromyxedema. I had the lumps removed and further investigation suggested that it was not scleromyxedema but still no definite answer.
RJR1066’s Story—A Negative ANA and a 50-Mile Hike
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.
Sharon’s Story—From Diffuse Scleroderma to Symptom-Free
My symptoms began in Sept. 2014 with fatigue and high heart rate of 140 bpm per a holotor monitor. Other symptoms followed: hair loss, swelling in arms, legs and face, tight skin on arms, legs, chest and face, teeth separating, raynauds, gerds, joint pain, hand tenderness, ulcerated fingers and many others. Diagnosed in Jan. 2015 with diffuse scleroderma dn RNA polymerase III antibody.
Beverly’s Story—From Rapid Decline to Lasting Balance
Up until the Spring of 1988, I considered myself phenomenally healthy. I ran three to five miles daily, bench pressed half my weight, lead an active social life and was budding into my career as a dietitian. My health, however, took a turn for the worst at age 27 when “strange things” started happening to my body. I remember going from “good” to “bad” in a matter of 24 hours.
In the late Fall of 1988, I had a routine blood test at my physician’s office. The results indicated an early detection of an autoimmune disorder. At that point, I thought that I had better pursue medical help as I was planning a trip to the Moscow and Leningrad, the following month, to present my nutrition study at the Soviet-American Nutrition Conference. This was taking place during the beginning of the relaxation of restrictions and hard feelings and the start of a dialogue between the United States and Russia. Needless to say, my physician canceled my trip to Russia and relinquished me to no work and no exercise for eight weeks. My Thanksgiving was spent pondering my future.
Aynur’s Story—Thirty-Seven Years of Scleroderma, Seven Years of Negative ANA
Dear Friends! I’ve been away for so long – sorry but you never leave my heart and thoughts! Just wanted to check in here, say hi and encourage all those new to the AP. It’s my 8th year on AP and 7 consecutive years of REVERSED ANA! With a very long standing but very moderate diffuse scleroderma without internal organ involvement, I started with just 100 mg twice daily. A year into AP and after ANA reversed to NEGATIVE, I’m on 100 mg once daily. I’ve started with a Canadian brand, blue-orange capsules (Stiefel) but I’ve changed brands several times as per the pharmacy supplies and for the last 2-3 years I have been on different tablets from the UK and the last one is Crescent, since capsules are no longer available. I’m doing great, the damage SD caused me is slowly but surely disappearing. And I’ve had SD for 37 years! First manifestation – Raynaud’s at the age of 3 (most likely after CMV virus 6 months prior and frequent tonsillitis) and full SD albeit without any internal organ involvement, by the age of 11. My early years were painful and I spent some time in hospitals (rheumatic fever, tonsils removed, etc.). Yet I pushed myself through the pain and did gymnastics (even received junior level certifications) between ages 7 and 11 and ballroom dancing from 11 till 14. Then, it all slowed and stabilised by age 18. I’m 40 now, mum of 2 beautiful, healthy kids. I’m very active – working, travelling, doing everything, walking/cycling almost daily 8 km…
Sharon’s Story—RNA Polymerase III–Positive Scleroderma: A Story of Recovery
My symptoms began abruptly in September 2014. Rash on face, swollen hands and fingers, swollen legs and feet and puffy face especially around eyes. Terrible fatigue. Chills and low grade fever. Very sensitive hands and feet. Hair loss, muscle loss, weight loss, teeth separating, growths on chest, neck and face. Brainfog, joint pain especially in wrists, fingers and toes and eventually all joints. Diagnosed in January 2015 with diffuse scleroderma and RNA polymerase III number was 116.
Susan’s Story—From Galloping Scleroderma to an Active Life
My SD symptoms started in 2005 but I was not diagnosed until 2006. I took conventional rheumatology meds for almost a year but my symptom progression continued very rapidly. I could not: open a water bottle, dress myself independently, walk downstairs with alternating feet, get up off the floor in a normal manner, stand for more than 20 min.
Adrianne’s Story—From Skeptic to Believer: My Scleroderma AP Journey
So it all began with a little weakness in my hands. Then it was a whirlwind of immense pain, fatigue, appointments, blood work, testing, and traveling to specialists. I wont bore you, you’ve experienced the same thing, but long story short, it was diagnosis diffuse systemic sclerosis AKA scleroderma.
Sharon’s Story—From Racing Heart and Swollen Hands to Walking Three Miles
Minocycline works! My symptoms started in September 2014. I was diagnosed in January 2015 with systemic diffuse scleroderma.