The ironic thing after being sick and off work for 10 months and then working part time another 10 months is that it's not clear whether I have pandas, a strep autoimmune disorder, or not.
Evidence for and against.
1. Currently the US medical machine barely admits to the existence of pandas in children. The US doesn't admit to it in adults. So even though a physician diagnosed me with it, he retired. The next physician said, "I don't believe in pandas." Uh, what? I had no idea that it is considered not real in adults. In Europe and in Canada, adults are diagnosed. When the doctor said, "I don't believe in pandas." I thought, does he not believe in the animals either? And I knew I was in the absolute hell of controversial diagnosis, where chronic fatigue and fibromyalgia were for years and years.....
2. I did have strep A, at least, there is strong evidence. Two antibodies: a streptozyme and an ASO. The ASO (anti streptolysisn antibody) is supposedly elevated for six weeks after a strep A infection and has been used to diagnose rheumatic fever. The streptozyme stays up for 3 months. In the kids with pandas it can rise into the 600 range. I was up at 600 the second time. More recently I have had two patients with walking pneumonia with a positive streptozyme. One had a positive ASO and the other had a negative one. Presumably the one with the negative ASO has strep pneumonia not strep A. The one with the positive ASO, "my" strep, is going to see the pulmonologist because it's been ten months and she is still not fully recovered. Hmmm.
3. I had pneumonia, as proved by abnormal chest CT, abnormal bronchoscopy and abnormal pulmonary function tests, done four months after the infection when I was still coughing. However, strep culture in my throat was negative at the start. I think this version of strep A lives in the trachea not the throat. Smart little bugger. I researched strep A and currently there are 4000 known strains and counting. I read that the kids with pandas will sometimes have a "flare" with a negative throat culture. Either something else is raising their antibody level or they have the tracheal strep A. And then they aren't being treated. On the bronchoscopy, no bacteria was left in my lungs, they were just still inflamed.
4. I was terrified and wired when I was really sick. However, I was borderline septic. The definition of sepsis is end organ damage from blood pressure dropping. Mine didn't drop because I could feel the fluid "third spacing", running out like sand from an hourglass, in my legs and arms. I drank fluid to keep up. They recorded my urine output in the hospital and how much fluid in. The doctor didn't look at it. She sent me home with 4200 cc in and 10,400 cc out. In 24 hours. Normal urine output is 3000cc in 24 hours. I did not have a fever or an elevated wbc count so she didn't believe that I was sick. I went home and drank the fluid to keep up. And tried to balance my electrolytes. With all that fluid, I had dropped my potassium and magnesium to levels where my muscles were spasming, including my throat and vocal cords, which is what made me go to the emergency room. The second time I got it, I measured my urine output with a "hat" on the toilet and again, it went up to 10,000 cc. You can see why people would drop their blood pressure within a couple of days if they didn't recognize it. It was terrifying.
5. So, pandas is an antibody reaction where the antibodies to strep A supposedly case emotional responses because the antibodies attach to the brain. But terror and anxiety are a pretty normal response to being septic. And if the kids do have strep A, but the tracheal one that can't be picked up on throat culture, are they septic? In the end, I don't know if I have pandas or not. If I get strep throat then I should have a pandas reaction if I have pandas and if it exists. I'd rather not, really. The mortality rate for sepsis is 28-50%. Once you get it you tend to get it again. I've survived twice. I hope not to go a third round....also I'm glad it wasn't the flesh eating strain.
6. Reading about strep A is fascinating. It has evolved with us, so it tries to dwell in and on people by making it's surface like a human cell. When it does this too well, we make antibodies to the strep A that then attack our own tissues: rheumatic fever, syndenham's chorea, glomerulonephritis, pandas, myalgias, scarlet fever. These are not autoimmune disorders, but "pseudo-autoimmune" because the antibodies are appropriately attacking the strep, but then cross react with our own tissues.