Support & Resources
Community Stories
Stories are sacred. We share them with dignity, consent, and deep respect for the people who live them.
Stories are sacred. We treat them with dignity.
Every story shared here is with the full knowledge and consent of the person telling it. We emphasize resilience and humanity — not labels or tragedy. The storyteller retains control of their narrative.
Sarah
Connecticut
After two years of being told my symptoms were anxiety, I finally received a Lyme disease diagnosis. Project Lyme's resources helped me understand my options and find a clinician who listened.
I was 34 when I first noticed the fatigue that wouldn't lift, the joint pain that moved from my knees to my wrists, the brain fog that made me feel like I was thinking through cotton. For two years, I saw specialist after specialist. Each one ran tests, found nothing definitive, and suggested stress management. It wasn't until I found Project Lyme's provider directory that I connected with a clinician who took my full history seriously. The diagnosis changed everything — not because it made me feel better overnight, but because it gave me a path forward.
Marcus
New York
I was a marathon runner. Lyme disease took two years of my life. The community I found through Project Lyme reminded me that I wasn't alone — and that recovery was possible.
I trained for years. Running was my identity, my stress relief, my community. When I started experiencing debilitating fatigue and neurological symptoms, I couldn't understand what was happening. The diagnosis came after 18 months of searching. What helped most during that time wasn't just the medical information — it was knowing that other people had walked this path and come out the other side.
Elena
Massachusetts
As a mother of a child with Lyme disease, I needed accurate information — not fear. Project Lyme gave me the tools to advocate for my daughter and navigate a complicated medical landscape.
My daughter was nine when she started complaining of headaches and joint pain. Her pediatrician was thorough and caring, but Lyme disease wasn't on the initial radar. By the time we had a diagnosis, she had missed months of school. The journey taught me how to research, how to ask the right questions, and how to be my child's most effective advocate. I want other parents to have those tools from the beginning.
Dr. James R.
Researcher, Johns Hopkins
The research funding from Project Lyme allowed our lab to develop a new diagnostic test that could detect Lyme disease in its earliest stages. That work wouldn't have been possible without them.
Lyme disease diagnostics have been largely stagnant for decades. The current two-tier testing protocol misses a significant percentage of early cases. Our research focuses on identifying new biomarkers that can detect infection within the first week — before the immune response that current tests rely on has fully developed. Project Lyme's funding gave us the resources to move this work from hypothesis to proof-of-concept. The next step is clinical validation.
"Would I feel respected and accurately represented if this was my story?"
We follow ethical standards to ensure empowerment, not exploitation. All story participants know how, where, and for how long their story will be used. We use person-first language, emphasize resilience, and never alter a story for dramatic effect. The storyteller always retains ownership of their narrative.
Share Your Story
Your experience has the power to help someone who is just beginning their journey. If you would like to share your Lyme story with our community, we would be honored to hear it.
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