Patient Stories
Sjogren’s Syndrome
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.
Sue’s Story—From Medical Mystery to Finding Answers
In August of 2003 my life was suddenly altered. Although I had some issues over the prior 16 years, no doctors could tell me what I was dealing with. Fatigue, joint pain and over the prior six years I would experience a weird sensation once per month where my eyes would be very dry. The dryness usually came around my monthly cycle and would go away shortly after, though the pain and the fatigue continued.
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.
Emmy’s Story—Wanting Her Quality of Life Back
I was diagnosed with RA in June 1999, had been symptomatic since April 1999 – got up one day and had pain in both feet. I got a Rheumatologist appointment in June, who confirmed I had sero-positive RA. By July, I was bed-ridden and could barely limp up and down stairs, I felt my life was over and I couldn’t believe just how much I missed the simple things in life, like taking a quick walk for a breath of fresh air. All of the NSAIDs (anti-inflammatories)the Rheumy prescribed for me made me sick (Naprosyn gave me projectile vomiting, I felt like death on the high dose of Ibuprofen that was prescribed, and diclofenac gave me an upset stomach). By the beginning of August I was taking Plaquenil, just six weeks after diagnosis, and by the end of August the Plaquenil had begun to take effect, I could walk up and down stairs, and go for a short walk. By October Plaquenil was working brilliantly and I was back to my normal self. Unfortunately, in December I collapsed with breathing problems and anaphalactic shock and was taken off the Plaquenil immediately and told never to take even one pill ever again.
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.