Patient Stories
Lyme Disease/MSIDS
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.
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.
Kim’s Story—From “No Good Drugs” to 95% Better
2005 was one of the best years of my life and also one of the worst years of my life. One of the most joyful moments Id ever experienced came that spring with the birth of my first grandchildren, healthy boy/girl twins, but that joy was being overshadowed by some strange illness. After enjoying excellent health my first 53 years, being sick was uncharted territory for me. In the past Ive required little medical attention and been pleased with the care Id received, so I wasnt even that worried about being sick because I felt I had good doctors looking out for my best interests and after all, I always got better. This time was different. For the first time I really needed my doctors to figure out what was wrong with me and why I was getting worse (in other words – do their job), so when the best they could come up with was that I was overly anxious it became clear to me that I was going to have to become a super sleuth and try to figure this out for myself. I knew enough to say with 100% certainty that anxiety wasnt my problem and that anti-depressants werent the answer. At this point, crushing fatigue was my biggest complaint, but quickly followed by a string of unusual symptoms that seemed to fall under the auto-immune umbrella.
Juliette’s Story—From Chronic Fatigue to Living Life Fully Again
My onset of CFS was very gradual. I had Raynaud’s and sleep difficulties for almost 10 years before any other symptoms appeared.
Rosemary’s Story—Believing in Recovery When No One Else Did
Writing the story has been very difficult, I just could not put it down on paper what I have experienced so will give a brief outline with the chance to update later. So thrilled and excited today to find that at last my immune system is clocking in after 3 years and three months of aggressive antibiotic therapy every day and no other supplement except antifungal and acidiphillous treatment for three years even though necessary I could not tolerate or manage the changes with them interacting with the A/P. Was concerned but had faith I would pull it all together eventually.