PANDAS & Misophonia

PANDAS??? The cute and fuzzy bears? Unfortunately, no, the PANDAS I'm talking about in this post refers to the condition Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS).

One thing I wish I'd known a lot earlier on in my journey to cure my Misophonia was how chronic infections can play a role in neurological disorders. Growing up, I had heard about conditions such as Lyme Disease, but didn't really understand them.

Over the years, I've been through a revolving door of doctors and received several different diagnoses including Obsessive Compulsive and Sensory Processing Disorder (note - even though I was diagnosed with OCD, I didn't have the typical symptoms most people think of, such as having to have everything in order. My OCD diagnosis was based on my sensory issues to sounds and textures). More recently, in October of 2019, a new functional medicine doctor I was working with in San Diego tested my Antistreptolysin O (ASO) titer. The ASO titer tests your blood for antibodies against streptolysin O, created by group A streptococcus bacteria (ASO Titer Overview).

My levels were abnormally high. As you can see from the image, the range is 0-200, and I was sitting pretty at 453.5. If only I could've had the same results on my SATs. At the time, I didn't think much of these results and my practitioner and I assumed my levels were probably high because I had been sick recently.

A few months later, I started researching the internet for correlations between high ASO levels and Misophonia. I came across a condition known as PANDAS that is correlated with OCD. I read the description of PANDAS and lit up. I was so happy and thought THAT'S ME!

Of course, this was a self-diagnosis so I had more work to do with practitioners to determine if my high ASO levels could be playing a role in my Misophonia.

I came across a book titled "Saving Sammy" by Beth Maloney and after reading it, was pretty convinced that my ASO level definitely played a role in my Misophonia. In the book, Beth talks about how her son changed completely after bouts of Strep Throat as a child. She mentioned that he developed strong aversions to certain sounds, which was a ding ding ding lightbulb moment for me. I won't mention specifics, but I found it interesting that I had developed Misophonia at a young age, seemingly overnight, and also had Strep Throat a couple times as a child. After reading about Sammy, I wanted to do more research into medical history.

I contacted my childhood pediatrician's office and asked for all of my medical records. Sure enough, after scouring through them, I realized that the year I first started complaining about my sensory issues was the same year I had Strep Throat for the first time. The second time I had Strep Throat was when I was 11, coincidentally the same year my Misophonia worsened and became permanent. This could be nothing more than mere coincidence, however, my ASO levels are something I'm keeping in mind and monitoring as I continue working with different practitioners.

I had my ASO titer tested again more recently, and my levels were even higher despite trying different treatments.

One of the reasons this increase may have occurred is because I started taking a BLIS K12 probiotic. This is a specific probiotic that is Streptococcus salivarius K12. You may be thinking if you already had a problem with strep bacteria, why were you taking a strep probiotic? The logic was that my system may be overrun with a bad strain or strains of Strep bacteria. According to John Tagg, founder of Blis Technologies, the bad strain of Strep is primarily Streptococcus Pyogenes. In his experience battling Rheumatic Fever, he found that supplementing with Streptococcus salivarius K12 helped prevent Streptococcus Pyogenes from proliferating, releasing him from his decade-long dependence on antibiotics.

Similar to John, many people in the PANDAS community experience benefits while on antibiotics, however, as soon as they stop the antibiotics, symptoms come back. I wanted to avoid taking antibiotics initially, in order to preserve my gut and to see if I could reduce my ASO levels in a more sustainable way. However, I think what may have happened is I started taking the BLIS K12 probiotic, and my body created more Strep antibodies, and unfortunately still wasn't fighting anything off.

As of now, my ASO levels are still high, I have not taken antibiotics yet, but am open to doing so in the future. On the natural side of things, some herbs I've tried are Oregano Oil, Cat's Claw, and some of Stephen Buhner's herbal protocols. However, I haven't tried them long enough to confirm whether or not they made a difference. This Strep/PANDAS-Misophonia correlation is also still a theory. While speaking with some researchers at the University of California, San Diego, I was informed that there are people they've seen with high ASO titers and no symptoms.

I recently started working with a new practitioner in Los Angeles who is an MD, but open to alternative treatment modalities. He's a pediatrician but agreed to take on my case, as he usually works with children that have developed PANDAS. I'll keep you posted on what we discover.

Another piece of information I forgot to include earlier is that while PANDAS specifically refers to Strep related infections, another diagnosis, known as PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), can be responsible for similar symptoms from a different kind of infection.

Do you have PANDAS, Misophonia, or both? Have you been successful in treating either condition? If so, please shoot me a message! I'd love to connect. Cheers, Chris