From Darkness to Light The Society to Improve Diagnostic Medicine Tells the Lorraine Johnson Story

By Sue Sheridan

The Society to Improve Diagnosis in Medicine (SIDM) is a non-profit organization that focuses on the issue of diagnostic error. Misdiagnosed Lyme disease is quite common and the consequences can be devastating.

The SIDM website recently featured the personal story of’s Lorraine Johnson, and the lessons learned from her own experience with diagnostic error. It is re-published here with SIDM’s permission.

L orraine Johnson was a high-functioning attorney in the late ’90s, living in southern California with her husband and children, when she started experiencing changes in her mood, energy level, concentration, and digestion.

An avid hiker, Lorraine loved to travel to the mountains of northern California and enjoyed spending time outdoors. In 1997, this hobby and a misdiagnosis would change her life forever.

Mysterious Symptoms

Lorraine Johnson, CEO of LymeDisease.orgAt first, simple things like taking walks or socializing were difficult for her, and she began feeling helpless as her situation worsened. Her symptoms included fatigue, cognitive impairment, severe lack of energy, gastrointestinal problems, and joint aches.

The specialists she saw treated her specific symptoms as individual conditions, such as treating her for arthritis and gastrointestinal issues. But no one considered that her condition may be multi-systemic. Without a proper diagnosis or treatment, her condition deteriorated and her hope dwindled.

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