This blog is primarily about my journey to recover from PANDAS. In doing so, I hope to encourage others in the same fight while advocating for the recognition and treatment of the disease. But the only reason I found out I have PANDAS is the fact that a family member had it. I am limited in how much information I can share about this person’s diagnosis and profound recovery. It is a beautiful story, but it is their story.
My part of that story is that I watched PANDAS unfold firsthand, unleash terrible fury and then buckle under the pressure of antibiotics and eventually, IVIG treatments. Important to recognizing and understanding PANDAS, is seeing that it is a relapsing and remitting disorder. As an observer, the episodic nature was all too familiar.
The one thing that made me think, “Do I have PANDAS, too?” was the fact that I was taking the very same medications as the family member who was diagnosed and treated for PANDAS. Both of us had been seeing psychiatrists for many years. We took the typical drugs for anxiety, depression, OCD and ADHD. Our doses never stayed consistent– there were periodic needs to adjust our meds– increases, decreases and even, for some seasons of life, no meds at all.
Initially, I resisted the thought of having PANDAS because I assumed I was under tremendous stress and once “life” got better, I would, too. Nevertheless, I fought a lot of anxiety, OCD, depression and ADHD symptoms. Sometimes I simply felt dizzy and woozy– like I was on the type of medication doctors give you before a medical procedure. (i.e. You are “there” but “not there” at the same time.) I managed. I hid what I could, as I always have.
Then I got sick with the flu. . . and never fully recovered. Influenza Strain A in the early spring of 2018 turned my life upside down. The quest for answers about my own health could no longer be ignored. So I asked for help, first by stopping by to see my primary care doctor. . . . (to be continued.)
Categories: The story continues