Patient Stories
Lupus/SLE
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.
Tyndall’s Story—Skiing Again After Lupus and RA
At the age of 14 I came down with what we thought was a terrible flu, a fever and extremely achy joints and fingers turning white with no circulation. My pediatrician tested my blood and most indicators for Lupus were positive.
Sankamithra’s Story—From Chronic Pain to Lupus Remission
My Primary was pleased with my labs and encouraged me to KEEP UP MY GOOD WORK.
Shirleys’ Story—Grateful for Nine Healthy Years
Thanks to the antibiotic therapy i started nine years ago for my disease is well controlled and this is without any side effects. I am forever grateful.
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.
Sarah’s Story—When “Normal” Became the Best Word She’d Ever Heard
This is long, but I’m a writer at heart, sorry! Hi, I am 33 yr old mother of two from California. I had Lupus full blown about 7 years. Previous to that, I had eating disorders, (anorexia/bulimia) from ages 15-18, which I now hear did some damage to the immune system, brain, kidneys, heart, liver, stomach, teeth,etc. After that, my health went downhill, even though I recovered from the eating disorders. Those young girls don’t realize what they are doing, wish I had.
Kim’s Story—Living Fully Despite RA and Lupus
It started in 1990 with a-lot of stiffness and pain. I wasn’t sure what to think and then came the Doctor visit that changed the way I live… In December of 1990 I was diagnosed with RA. I was given anti-inflammatory drugs and steroids which helped and for four years I did well, using methotrexate every so often to slow down the disease. But, in 1994 I became very ill with recurrent kidney infections that would not go away, after five weeks of different antibiotics that did not help I was hospitalized and another diagnoses came down the pike. Lupus.
Sheila’s Story—When Her Children Got Their Mom Back
My story begins in 1988. I was a single mother, very active. I became quite ill with what seemed like the flu. I was still bedridden after two weeks of the onset and was starting to wonder what was really wrong with me. I began trekking around to many doctors and was finally labeled as a Chronic Fatigue Syndrome patient. I lingered in this state of exhaustion for another 9 years till things went really haywire.
Lisa J’s Story—A Navy Veteran’s Journey Through MCTD
I was always a healthy kid growing up. It seemed no matter what I did, I never got hurt bad. Not even a broken bone. When I was 16 I came down with Mono. I was sick for three weeks and thought I was going to die. I got over it and I seemed to be back to normal except I was tired all of the time.