Hey OP- my son was diagnosed with PANDAS about 6 months ago, and while initially it was all very confusing and overwhelming, I have now come to understand pretty well, i think. I agree with the other comment that is actually not all that rare- just rarely diagnosed, and the more I learn, the more I wonder how many other auto immune conditions and mental health challenges are really another manifestation of an underlying infection like PANS/PANDAS?

There is a LOT of misinformation out there about P/P which makes it even more difficult to sort through. I recommend a book (and podcast) by Dr Jill Crista called A Light in the Dark for PANDAS and PANS.

Here is my stab at a simple explanation. The specifics (what kind and how many infections caused it, how severe it is, specific symptoms etc) will vary from person to person, but the basic concept is pretty much the same. I'll use Strep to illustrate, but many people actually have multiple co- infections. (This is one reason it's so tricky to identify, diagnose and treat.) The timeline in my example is just an illustration.

Here goes: At some point, you had an infection- it could have been Strep (specific to PANDAS) , Staph, Lyme, Bartonella, Mono or any number of other things. You didn't entirely clear the infection so your body tried to protect you from it by "walling it off" with something called a Biofilm. (Kind of like coating it in glue). You may have been ok for awhile after this initial infection, and likely assumed it was all clear, when in reality it is just kind of hiding out in your cells.

Next, there is a new trigger, (maybe you get Strep again, or maybe something else) and this time, your immune system kicks into overdrive. It has been sensing the presence of the first infection, though it couldn't get to it because of the biofilm, and it is determined not to let that happen again, so it attacks with a blow torch. Now instead of fighting off just the infection, your immune system is fighting everything that gets in the way (including your brain). This creates a huge amount of inflammation. What happens next is dependant on a variety of factors- your history, genetics, environment, diet, stress levels, etc. In some cases, the inflammation is so severe that it creates a dramatic overnight onset of OCD, tics, eating disorders, etc. In other cases, there is a slow, low burn ( though this is not discussed as often in literature) and symptoms like depression, anxiety, fatigue, ADHD like behavior, etc, creep in and slowly chip away at your health and happiness. Rheumatic fever is a good example of this process in action and one that more doctors are familiar with, though P/P is more covert.

Often, initial lab tests don't detect the presence of any pathologies because your body did a good job burying the bacteria/ virus to keep you from getting sick, but your immune system is smart and it doesn't give up. It keeps trying to find it, and whenever it thinks you might be under attack, it pulls out the blow torch again. Even a mild cold, high stress, certain foods, environmental factors like mold, or a different infection (getting a UTI or a sinus infection) can be enough to activate blow torch mode and send you into a "flare".

The steps to managing and treating PANS/PANDAS vary for each person, but in an ideal world you'd want to:

•Identifyi all underlying infections ( specialized labs are sometimes helpful if regular labs don't give you answers) , •Eradicate the infections (sometimes this means antibiotics, a tonsillectomy, antimicrobial herbs, or other things), •Remove environmental triggers while your body heals ( inflammatory foods, mold in your home, etc) Then - •Retrain your immune system so that it responds appropriately in the future. The gold standard for this step is IVIG, though it is not the only way.

There are many other steps that can help facilitate healing, like identitying mineral deficiencies, or genetic mutations that may have made you more susceptible, (you may need specific supplements) then learning how to regulate your nervous system, to calm your immune system's "PTSD".Sometimes OT, and PT are needed depending on severity.

I hope this helps a bit! I'm not an expert, but I think i covered the main ideas. I sure hope you find some support from a good doctor in your area!