Patient Stories

Patient Stories Patient Stories

Project Lyme believes in the power of story telling.

Tick-borne diseases and their effects on patients are still widely misunderstood by the general population, and sometimes denied by the medical professionals as well as the government officials meant to keep people safe. Project Lyme shares stories of patients to reinforce the harsh reality of living with persistent forms Lyme and the related coinfections. Project Lyme leverages its platform to give power back to the people and to make it easier to “Talk About Ticks” so that one day we can eliminate this epidemic from our world.


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.

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We have shared hundreds of stories across our network in an effort to raise awareness of the struggles of chronic patients.

Meet Grace

At 17 years old, Grace Burns started having regular episodes where her legs grew numb, and she lost consciousness. She quickly developed other symptoms, including fevers, arthritis, migraines, nausea, nerve and muscle problems, and brain fog. It would take three years for her to find out why: chronic and neurological Lyme disease.

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Project 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.

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During his diagnosis, Johnny was monitored for 26 different symptoms.

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