Patient Stories
Dermatomyositis/Polymyositis
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.
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.
Lisa’s Story—From Leg Weakness to Regaining Her Strength
In April 2014, I noticed that my leg strength had diminished. I mentioned it to a trainer, who said I could quickly regain that strength. She had me do various exercises including asking me to squat down and jump up. When I squatted I was unable to stand back up on my own, let alone jump. She advised me to see my doctor, as my sudden loss of strength could be an indicator of something serious.
Liesl’s Story—From Prednisone Roller Coaster to Remission
My story was featured in the RB Intercessor a few years ago… Liesl Dutro, Dermatomyositis currently 37 years of age. My first symptoms 6appeared in July of 1996 and I was diagnosed with Dermatomyositis in September 1996 following a muscle biopsy. Symptoms of Dermatomyositis first appeared after the birth of my second child.
Karen’s Story—From Housebound to Hiking Eight Miles
I was diagnosed with Lupus in 1995 at the age of 48, I had seen seven doctors before this was concluded. Lupus is an autoimmune disease one of about 80 known to the medical community. my symptoms started with lower back pain and terrible rashes all over my body, the ones on my head neck and chest would ooze and bleed. I had severe gottrons papules on my hands my head itched so bad I thought I would go crazy. Had difficulty swallowing and extreme sun sensitivity along with fatigue, sleep disturbances, dry eyes, hives, shingles, bronchitis, short term memory loss, flushing ears, leaky gut, fibromyalgia and sustained vintricular tackcyardia (rapid heart beat ) My CPK (inflamation of the muscles and skin) was elevated to the point where I couldn’t dress myself or drive the car as a result I went on medical leave from work. You might not have all but you will have many of the symptoms to one degree or another. I have also learned that stress produces cortisol and cortisol causes TH-2 cell overactivation the body goes “wacko.” For some after a stressful situation an autoimmune disease may manifest. Now for my story.
Dex’ Story—From Prednisone Roller Coaster to Remission
In April of 2002, I developed a bout of nausea that was unlike any other I’d experienced, leading to whole body weakness and a host of feelings that I can’t really describe and shudder to remember. That evening I had a seizure and passed out trying to get to the bathroom. Everything went haywire and I was in bed for a week.