Why we share
Story sharing serves many purposes for the Lyme community. It can be therapeutic, it can help raise awareness, but most importantly it serves as anecdotal evidence to back up the hundreds of peer-reviewed articles showcasing that Lyme disease persists in patients.
We have shared 50+ stories across our network in an effort to raise awareness of the struggles of chronic patients.
Ten years passed before I could find a functional medicine practitioner to test me for Lyme disease, which revealed that I’d had Lyme for many years. By that time, I was suffering from short-term memory loss, Bell’s palsy, migraines, brain fog, light sensitivity, air hunger, neuropathy, IBS, SIBO, difficulty reading and forming sentences, difficulty walking, chronic fatigue, and muscle and joint pain.
Our patient-focused initiative, Generation Lyme, is dedicated to sharing stories and cultivating a community for Lyme disease patients.
I was first evaluated by ER doctors who determined I should be admitted to the ICU given my stroke-like symptoms. It was never mentioned throughout the series of tests performed that the symptoms may stem from Lyme. Unfortunately I was discharged from the ICU with more questions than when I was first admitted. It was only weeks later that Dr. Brian Fallon in NYC re-ran blood tests and identified the positive IgG results. At that time I was finally given antibiotics but the Lyme had already entered my central nervous system. While I have lingering symptoms to this day I consider myself extremely fortunate to have an army of Lyme doctors here in NY who properly diagnosed me after I was misdiagnosed at a critical point.
During his diagnosis, Johnny was monitored for 26 different symptoms.