Living with Lyme – a 4-year search for 1 diagnosis

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SARASOTA – My life changed on February 14th 2013. I had to learn to manage debilitating fatigue, body aches, and headaches. This is my life, living with Lyme disease.

I woke up in septic shock. My organs were shutting down and there was no time for a diagnosis, just antibiotics. I got lucky, and in five days I was out of the ICU, but I wasn’t out of the woods.

The fatigue never left, and no one diagnosed me. Four years later my gut told me something was wrong. That’s when I saw Emergency Physician Albert Avila.

“When I looked at your medical records there were some unanswered technical questions,” says Dr. Avila. “There were some assumptions that I felt had been made, some lab results that had not been completely followed. A picture started to emerge in my mind that what you were describing to me was very real.”

Constant fatigue, headaches, joint pain, hot flashes, memory loss, trouble sleeping; it was all very real. After four years and countless specialists, Dr. Avila is the only one who went the extra mile, determined to diagnose me. “I believed you,” he says.

He looked at the whole puzzle, and followed up on the labs that had gone unanswered.

When he found the answer he said, “The good news is we have a diagnosis, the bad news is it’s complicated to treat.” Complicated is right.

“There’s some controversy within the house of medicine as to whether we’ve been using the correct methodology the right definition to make the diagnosis,” says Dr. Avila.

Disagreements between the CDC and the International Lyme and Associated Diseases Society about how to diagnose Lyme and how to treat it, making the road to recovery windy and uncertain.

The hardest part is that people don’t understand. On the outside I look healthy, but on the inside my body is constantly fighting. I want to live my life to the fullest and slowly, I’m taking it back.

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