Letter to Congress: A Personal Testimony

(Sent to Sen. Blumenthal. A Testimony for Congress.)

I used to be a Certified Public Accountant, earning the fifth highest score on the Oregon CPA exam. However, due to Lyme disease—a condition I recently discovered—I lost my ability to practice five years ago. Doctors misdiagnosed my symptoms as psychological, leading me to spend time in a mental ward where I was wrongly treated for a mental disorder I did not have. This healthcare injustice took a significant toll on my life.

A friend truly saved my life by realizing I was a risk to myself, not wanting to ruin my husband’s or children’s lives. For four years, I endured the fog of psychiatric medications, losing my identity—even in the eyes of my family—until a compassionate doctor at Stanford heard my story. I will be endlessly grateful for his insight and support.

The Stanford doctor who diagnosed me had faced similar misdiagnosis. He had been given a death sentence with Lou Gehrig's disease just a year earlier. After seeking a second opinion, he found out he had Lyme and other neurological tick-borne illnesses. With his own life at risk, he determined the best treatment course, yet he faced obstacles as no MD in our state was willing to treat him. This healthcare injustice pushed him to travel back east for the necessary treatment. A year later, he returned to practicing medicine while undergoing high-dose picc line antibiotics.

I began my own treatment a week ago. After my husband shared my story, I visited his office the very next business day, where I learned I had all 15 indicators of Lyme disease, affecting multiple systems in my body and indicating an infectious diagnosis. The tests confirmed Lyme disease with a 98% specificity—contrary to the ERISA and Western Blot tests mandated by the American Medical Association, which stated I did NOT have Lyme disease.

Struggling to manage my home, I unwittingly tried harder to fail than I ever did in my successful days. My efforts felt like the widow's mite—small acts that no one noticed for far too long. The injustice of being misjudged has been almost as painful as the physical, emotional, and mental effects that Lyme disease can have on the body. Now, I feel liberated from that injustice.

Yet, I realize my battle has simply changed to a new front. In seeking Lyme disease treatment, I find the system in our country is politically bogged down and unable to protect and assist its citizens effectively! Despite exhibiting all 15 indicators of Lyme, I was the proverbial zebra in the psychiatric and neurologic communities, slipping through the cracks for the past five years!

Two years ago, we lost our home and had to declare bankruptcy. My 15-year-old daughter has taken on the role of caretaker when I crash and cannot function. I often have to prepare meals in the middle of the night due to insomnia, debilitating vertigo, and sensory overstimulation in our small living quarters. We’re trying to unite and support each other, but all of us yearn for the return of *Me*.