Pandas stands for Pediatric autoimmune neurological disorders associated with streptoccocus A.
The website says that it's pediatric only, but of course children grow up. When I was nearly obsessed with chasing the mysterious bacterial tracheobronchitis in 2012, I did notice that certain patients got sicker. The patient with a splenectomy, patients who had had cancer, and as my focus grew sharper: patients who get strep easily. Who had had rheumatic fever or scarlet fever, all sequelae of strep A.
I think that there may be quite a few more PANDAS victims than anyone currently realizes. It's a nice setup, the Panda Strep that I have been chasing.
1. tracheobronchial. Quick strep and throat culture negative.
2. resistent to zithromax: people get a little better and then get worse.
3. smoldering course. The index patient came in on Dec. 30, 2011 and I thought it was viral. She came back with a paralyzed vocal cord and then with a pneumonia. Zithromax made her feel better for a week or two. High dose zithromax and steroids then did the trick. A depo penicillin shot is what my infectious disease doctor advised this time.
4. reinfects. Strep A has always done this.
I'm not going to paint the clinical picture here. Suffice it to say that it has a child/teen pattern, a more middle age pattern and one of the clues in my elderly is black stools that aren't blood, or chronic diarrhea or near diarrhea.
The patterns relate to the childhood ones on the website.
After my bout of PANDAS in 2012 and my current one, I'm starting to figure out how to treat it. Darn tricky for me. I get too high an antibody titer. A high titer can cause glomerulonephritis, clog the kidneys, cause renal failure. I've been trying to avert this. Ten liters a day is a lot.
The first time I saw the PANDAS site I thought, I have ALL of it, except the tics. This time I have the tics. Just small occasional ones, muscle twitches, as if they ripple. Feels weird. The emotional part is carbohydrate related, that is, the carbohydrates feed the strep which in turn bumps the antibodies up. So if I eat a raspberry I cry. Crying, of course, gets rid of some of the antibodies. The body knows what it is doing and tries very hard to survive.
With the very high fluid wash out to protect the kidneys, there is also replacement therapy. Potassium, sodium, magnesium, phosphorus, trace minerals, all the vitamins, especially A, D, E, K. Vitamin A lack is associated with the eyes, and strep can cause blindness. Vitamin K with bleeding, therefore my two trips to the ER this week with spontaneous bleeding. Gums bled. This is highly worrisome. Can bleed out from intestines. Trying to avoid that. Vitamin D, bones and teeth. One of my teeth broke two weeks ago. Not a coincidence, I think. Vitamin B12, folate and thiamine all important for nerve health: try to avert neuropathy.
Any carbohydrates feed the strep and then the antibodies get worse. So the mental health and other symptoms can be controlled with a zombie/vampire diet. Meat, and organ meats would be good, and blood to replace iron. Three days ago I ate 5 raspberries and felt as if tiny pins were sticking in the muscles of my arms and legs.
My theory is that the antibodies attach to an adrenalin receptor, so are adrenalin-like. This explains my huge caffeine craving. The caffeine displaces the strep antibodies from the brain receptor and then I am only on caffeine, not on crazy antibodies. The caffeine also makes me urinate them out. When I was in preterm labor I was on terbutaline, which is also related to caffeine and adrenalin. I think the preterm labor was also a Pandas reaction.
Long term, I think that the streptozyme, which is the strep antibody, goes down. But if the infection is still present, then I think it can cause chronic muscle pain, chronic tiredness, a low or borderline thyroid and borderline low cortisol. This is the zombie stage, which follows the vampire hyped up glittery scary stage. Long term, this strep could be associated with diabetes and obesity.
I have not isolated Pandas strep because I don't happen to have a bronchoscope. Just old fashioned rural doctor family medicine: close observation, an eye for patterns, wanting my patients to be well, stubbornness. I have promised the ER not to treat patients until I am "cleared". I am angry, because I'd already taken myself off work. I'm not going back unless I am bleeding at the gums and bleeding out. Meanwhile, I can still fucking think..... and, hmm. I think my immune system and PANDAS conspire to knock me out when I am trying to deal with a major puzzle or problem; when I get close to the solution. I am taken out to protect my heart. It may look crazy to others, but you do get time to think deeply on bedrest and fear definitely motivates.
Maybe the strep A bacteria is trying to cure us of the arrogance of discrimination against mental health diagnosis: what if some proportion of the current ADHD, anxiety, OCD, bipolar, autism, you name it, is a PANDAS reaction? Would you feel differently about someone who is "crazy" because they are infected, verses "crazy" for unknown reasons?
5. airborne. Like tuberculosis. My impression is people barely have to cough. Early symptoms are just some hoarseness -- and maybe feeling just a little bit wired......or scared.....or anxious.....
Having flooded the catbox, I will take my leave and rest.