PANDAS? Hoping for answers

[ThreeAngels]

Hi everyone.  I've had an undiagnosed facial tic for at least 20 years. (I'm 41 now).  I've been to a neurologist, had an MRI, been on a few meds (Klonopin is the only one I can remember).  I even saw an acupuncturist. They just call it "tic disorder".
Yesterday they got pretty bad, to the point where they I was grinding/tensing my teeth.  It's mostly blinking/winking, neck tensing, nose clearing, etc.. and more dominant on my right side. Tiredness, caffeine, stress, going too many hours without food/water all seem to make it worse.
I started looking up some ways to get relief, and saw PANDAS come up.
When I was younger, I used to get strep a lot. Like every other week at one point.  The basketball team thought it was a good idea to share water bottles....
Penicillin worked, but one of the last times I had it, they put me on Rifampin.
I have anxiety all the time - complete hypochondriac too (probably why I'm here asking this. Ha!)
Does this sound like PANDAS to you? I know it's primarily adolescents, but I've read about some adults as well.  I'm just trying to find an answer to why I'm getting these tics, even if they never go away, it'll be a peace of mind (sorta).

I don't want to open the door to doctors again until I know what to look for and what to ask.

[Chemar]

Hi ThreeAngels,

I just wanted to welcome you to the forum. I am not clued up on PANDAS beyond the basics, so hopefully someone with more knowledge will be along soon.

However what you describe  of your strep history, would make me definitely look more into a possible PANS connection to your tics, anxiety etc.

Hope you find answers and effective treatment.

[4Nikki]

It doesn’t have to be pandas, I.e. born from strep, symptoms can come from any illness where your immune system overreacts. Look up cytokine storm on YouTube to get a understanding of how the immune system responds to an infection or virus and then you’ll get an idea of why there are so many different symptoms and responses. With our kiddo, the underlying problem is dysfunctional mitochondrial cells. When ever she gets an infection or virus her symptoms are elevated and she gets inflammation markers in her blood test. This means her immune system is building antibodies that are inflammatory. Sometimes her tics are exasperated to the point that it can’t be managed. Benadryl is a blocker and suppresses her symptoms for a while but when it wears off her symptoms become more stronger So we don’t give her Benadryl. However it can offer us relief until we locate the cause. ibprophen & pseudoephed helped with the binding and clears out the log jam of antibodies and protein cells from her basil ganglia. But if we don’t find the infection or virus the symptoms will come back. The Cunningham panel identified which ones were way off the scale. 

[Outofthefryingpan]

Hello There Three Angels,

Welcome! I know that it can sometimes take a long time to get a response on here - since the relative privacy that this forum offers means that it is not as immediate as social media and peopIe tend to check into it less often.

I have a young teen with relatively new tics and ocd, so we suspect PANDAS. I can certainly agree that tiredness, caffeine, stress and going too many hours without food/water all seem to make it worse. We also find that gluten and dairy have a detrimental effect (this is not the same for everyone) and indeed all the usual "nasties" that come with processed food. We have based our thoughts on experience, trial and error and dietary tests.

4Nikki makes an excellent point that it is important to stay on top of looking after immune health since inflammation (either caused by certain foods or infections) doesn't help and manifests itself as different symptoms in different people.

[MLee]

Hi ThreeAngels,

You could always make an appointment with a PANS/PANDAS literate Naturopath and discuss with them. They may be able to help navigate things for you.