In 2006, a bite from a Lone Star tick changed my life forever. I developed Alpha-gal syndrome, triggering a full-blown Mast Cell Activation Syndrome (MCAS) that left my body in crisis daily for two years. Desperate for answers, I spent a month at the Mayo Clinic, where specialists had never seen MCAS triggered by a tick bite—this was entirely uncharted territory. My case was so severe that they told my husband to prepare for the worst; they believed I had only a month to live.

 

Under the care of Dr. Tina Merritt in Northwest Arkansas—one of the first physicians to study Alpha-gal—I became her very first patient with this condition. At the time, Alpha-gal wasn’t even recognized as an allergy. Today, Dr. Merritt treats numerous patients suffering from “Beef Allergy” and MCAS, contributing to the growing understanding of how tick bites can trigger life-threatening allergic responses.

 

During my treatment, the Mayo Clinic was at a loss. My symptoms mimicked late-stage cystic fibrosis, and my oxygen saturation levels were unstable. Genentech had just released a new medication for cystic fibrosis patients. Though it was intended for another purpose, I inhaled it several times a day just to keep my oxygen levels steady.

 

At the time, I was one of only eleven patients in the U.S. diagnosed with MCAS linked to Alpha-gal syndrome. I was fighting to survive, and survival meant rebuilding everything—my health, my understanding of my body, and how I lived my life.

 

Soon, I will share videos from my 2006 journey, offering an intimate look at what it was like to navigate this unknown condition.

 

Fast-forward nineteen years, and the pieces are finally coming together. I recently found a well-informed physician who provided a genetic test that may offer deeper insights into my journey.

 

This is my story—a testament to resilience, advocacy, and the power of never giving up. I share it to help others who are walking a similar path so that no one has to face this journey alone.