Did I Lose My Mind to a… Sink?

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.

But I never would’ve imagined I had this bacteria in my tonsils, especially since they looked small and healthy before they were removed. Although I’ve been having fewer PANS symptoms since my tonsillectomy, I was incredibly skeptical that there would be any infection found, let alone something as strange as Serratia. For years, I’ve been accustomed to undergoing all manner of blood work and tests only to have negative results.

But the other day, as I logged into the online portal to read the pathology report on my tonsils and adenoids, I was shocked to see the words, “Serratia marcescens tonsillitis.” The bacteria were not only in both of my tonsils, but in my adenoids as well, along with white blood cells. Interestingly, there wasn’t a trace of Strep or Mycoplasma pneumoniae or MRSA or any of the other more common findings in PANDA tonsils.

After months of not knowing why I was flaring every two to three weeks, I finally had a possible explanation.

I called my GP and shared the news, and she wanted to rule out an infection in any other part of my body. This meant sticking what looked like a long Q-tip up my nose, another around my butt, having me pee in a cup, and another needle-stick in my arm for a blood culture. All of these cultures came back negative, so it turns out that I’m infection-free now!

It’s unnerving to think that I had no idea there was a terrible bacteria living in part of my body this whole time. It’s even more unsettling to realize that an occult infection was essentially making me lose my mind. This is the kind of thing that could be the premise of a Sci-fi horror movie… But it’s just real life for me.

Although having this bacteria in my tonsils could explain my very frequent flares, I will always wonder: how did I get Serratia in the first place? Maybe it was the dirty sink or my orange-stained shower curtain. Maybe it wasn’t. I’ll never know. All I know is that I’m 90-95% symptom free with my tonsils and the infection gone. Whatever provoked my immune system to attack my brain and ruin my mind is gone now.

So what’s next? I’ve gone seven weeks without a flare—the longest flare-free period in the last year. If I do have another major flare again, my doctor wants me to do a three-week course of Bactrim instead of a Prednisone burst, because maybe, I’ve been flaring whenever I’m fighting off Serratia. Unfortunately, S. marcescens is resistant to many antibiotics, including penicillan-based antibiotics, so the Augmentin XR I’ve taken since October has offered no protection against it.

As for the sink… My mom has since scrubbed it out with bleach—same with the shower curtain. In order to kill this bacteria, you need to use bleach or hydrogen peroxide; it’s resistant to many other household disinfectants. I know this because, strangely, I did a long Biology report in high school about preventing S. marcescens infections.  For all I know, the whole time, the bacteria was living in my own tonsils. Oh, the irony!

Now, I’m Serratia-free, and my bathroom appears to be, too. I may not know for sure how I became infected, but one thing is certain: I’ll never again look at another pink ring in a sink in the same way!

9 thoughts on “Did I Lose My Mind to a… Sink?

  1. Wow, Iris!!! What a stunner! Sounds like data that should be RUSHED to ALL PANDAS/PANS docs and all other interested parties! It really bodes well for getting t&a!!!! Speaking possibly over personally… When we were considering T&A, we wanted to have Joy checked out “with swabs” too (but struggled to find someone to do them, including a vaginal swab, as it’s possible to have strep there. Maybe other stuff too?).

    Can’t believe you’ve done a REPORT on your very own arch foe! That’s a marvel. Truly. (I wonder how that bacteria even first landed on your radar!)

    Maybe this is one of our marvels. My Dad–who died in 1981–was a Pathologist! He used to give me throat cultures at the breakfast table (so all of my strep throats would be treated and would not progress to Rheumatic Fever!). Hmmmph. I surely crave his input (and supportive encouragement/respect for the severity) now! (I even wonder if HE had whatever has sensitized Joy to this.)

    Are the doctors wanting to spread your news???

    Thank you, thank you for sending the photo! I will keep a lookout for this.

    And maybe we need another (non-moved-to-VA) ENT now…

    I will offer an update on our (ahem) progress a bit later using a real keyboard.

    Just WOW! What amazing news/fantastic progress!!!

    Be s’well! Jill


    1. Yes, it was quite a stunner, but I was most surprised to not have any strep. There’s no way for me to know for sure that Serratia was the culprit and not just benignly lurking (though I find it hard to believe that my fragile immune system was unaffected by bacteria in my tonsils). It could’ve been EBV lingering in my tonsils instead that was messing with me (I had it right before I fell off the cliff last summer). Who knows? All I know is that I’ve been much better so far since the T&A.

      When I was doing the report in high school, I kept thinking to myself, “Wow, I hope I never get a Serratia infection!” My teacher assigned the subject because Serratia is a relatively common cause of hospital-acquired infections… That’s also amazing that your dad was a pathologist!

      My doctor (and the entourage of residents/med school students) said they’d never seen someone have less OCD after tonsillectomy (I was their first PANS patient) and said they’d never forget me. Hopefully this means they will talk about my case…

  2. Wow, what an important post. I learned a lot! You sure made the right decision going ahead with your surgery and I hope you continue to feel well. I’m going to clean my sink now :).

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