“You’re going to hate me when I tell you this,” my cardiologist said this week.
I braced myself to be told my heart was damaged from Rheumatic Fever—or to be told my symptoms were all in my head, as so many doctors had said over the years…
With this latest relapse, I’ve been living as a ghost in my own life.
In a single day, I went from eagerly and excitedly whittling away at homework for my summer classes, to crying at the thought of writing a single paragraph of a paper. I went from enjoying meals and coffees with my friends, to being terrified of any group of people and not eating lunch at all. I went from being praised at school for contributions I made in my department, to wanting absolutely nothing to do with my chosen field.
Since being diagnosed with PANS, I’ve been on antibiotics for twenty months straight, save for one two-week break. I’ll continue until six months after my last symptom, or at the very least, through my senior year of college.
When I was first diagnosed with PANDAS in 2014, my doctor said the treatment plan was to give me “the whole kitchen sink.” In other words, I would receive the full range of therapies, many of them all at once. It was unscientific, since this made it hard to tell which treatments turned out to be the most effective, but for a girl who could hardly walk and had lost over 10% of her body weight, this approach was necessary.
As I approach final exams this week, I’ve been thinking back to three years ago, when my life changed forever, on December 17th, 2012.
At the time, I was seventeen and in my senior year of high school. I was excelling academically, and people told me I’d have a promising career. I was popular with lots of friends. I felt such a sense of freedom in being an “adult” by learning to drive. I thought the possibilities for my future were endless.
But in an afternoon, my whole world collapsed.
I’ll be the first one to admit that there’s pretty much nothing good about having flares or having to take all of the antibiotics and other medications that I take. But, sometimes, in the craziness of it all, I just have to laugh at my circumstances—especially when there’s a hamburger on my bottle of Cefdinir, which I only acquired because of a flare…
After five days of an increased Prednisone dose the other week, I was starting to come out of the mud of depression and brain fog. I almost thought I was okay. My psychiatrist had me double my Wellbutrin to help what was left of the depression, and I was almost hoping that would be enough.
But then the PANDA bear grabbed me again. Continue reading “Can Hamburgers Stop Flares?”
Ever since my tonsillectomy, I’ve noticed my OCD dying down significantly. I’ve found myself touching cabinet knobs in the kitchen that I haven’t been able to touch in over a year. I’m not checking my room for people trying to hurt me. I’m not washing my hands all the time.
I’ve been in CBT all summer, but the improvement I’ve seen seemed to happen much more suddenly and with much less effort than what I normally get from using therapy techniques alone. It was as if maybe, I had less brain inflammation, because I no longer had an infection in my tonsils.
Serratia marcescens… What in the world is that? An Italian dish? An exotic island town? Neither. It’s the name of a bacteria that you’ve probably never heard of—a bacteria that had taken up residence in my tonsils.
Serratia can be found anywhere, but it thrives in hospitals and in damp spaces like bathrooms. If you see a pink or orangish ring around a drain (such as mine, pictured above), it might be Serratia. Most people never have trouble living near the organism, but in hospital settings, it can cause serious problems. For me, having it in my tonsils was likely an ongoing trigger making my immune system attack my brain.
When I first found out that I needed a tonsillectomy, I made three appointments with three different doctors at two hospitals. While this may sound excessive, based on past experiences, I knew the first doctor or two might refuse to do the surgery as soon as I mentioned PANDAS, especially since my tonsils looked healthy on the outside.
Indeed, when my records were sent to the first doctor, my appointment was cancelled within two hours and my case passed to a different doctor in the practice.
With one day left until my surgery now, it’s been an interesting week. For the first time in eleven months, I’ve stopped antibiotics completely, so as not to influence the tonsil and adenoid cultures that will be performed. The doctors also told me to stop all supplements, so my pill cases have been extraordinarily empty these last few days (a much-welcomed sight!). Although I’ve had a slight increase in tics, trouble concentrating, and more trouble falling asleep, I haven’t noticed nearly as much of a difference as I expected.
