Late Stage Lyme Disease: Diagnosed 20 Years Later

At 11 years old, it was common for Emily to play in the grassy field of the buffalo farm where she grew up. One day she was bitten by a tick, developing a bullseye rash around the bite. Within weeks she developed a severe fever and hallucinations, but unfortunately the connection between her mysterious symptoms and the tick bite was not made. Emily spent the next 20 years dealing with an increasingly debilitating illness. She suffered from short term memory loss, seizure-like episodes, an inability to control the muscles in her face, difficulty reading and writing, and eventually required a wheelchair. Lyme disease finally came onto her radar by chance, and it was a whirlwind of emotion to finally find and confirm a diagnosis. It took five years of rigorous treatment, but Emily is now in remission and experiencing life in a whole new way.

In this episode of the Major Pain podcast, Emily shares her harrowing journey through constant illness and the elation at finally finding answers. She recounts the many times she was doubted by doctors, misdiagnosed or denied proper care, compounding emotional trauma on top of the physical challenges of her disease. Her intense treatment included intravenous antibiotics and the use of a hyperbaric oxygen chamber, the latter of which still offers relief to this day. She also shares a message of hope to those still searching for answers to their own mystery illness, to keep fighting for a diagnosis in the face of an unyielding medical system.

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