By now you brilliant noders have figured out that I think chronic fatigue, fibromyalgia and long haul covid are all related to PANDAS or PANS. And that I have PANS. Not self diagnosed, as the stupid rumor has persisted since 2012. I gave my doctor hell about that and said, "Fix the damned chart." She did.
The rumor probably persists anyhow. Though the ER folks were all more professional and nicer to me with the diverticulitis than they have been with four previous pneumonia visits. But... I also did not have a PANS reaction with the diverticulitis.
So what does THAT mean?
The Guidelines for treating Pandas say that infection comes first and then the psychiatric reaction, because of antibodies. My four pneumonias were all the other way around. The first was triggered by my mother's death in 5/2000 and by the realization that my marriage was going to hell. Didn't get divorced until 2007 because I tried very hard to fix it. Influenza pneumonia, out for two months, accused of malingering by "partners", 2003.
2012, grundoon's death and the subsequent family discord: Strep A pneumonia that nearly killed me. That was a very close thing. Treated near sepsis at home with high dose clindamycin and penicillin plus avoiding carbs. Strep A eats glucose.
2014: one year practically to the day from when I found my father dead, Strep A pneumonia again. This time I was out for 6 months and then worked half time for 6 months and then really couldn't ramp up past 10 patients daily without being exhausted. I have the mild version of chronic fatigue, though oxygen has fixed it now.
2021: Two triggers. One was closing my clinic and saying goodbye to my patients, some of whom I had known for 21 years. It hurt. Also a relationship went into difficult waters. The psychiatric stuff started up in December 2020. We sent out the letter about closing right before the start of November, and my last patient was on January 6th. The Covid-19 vaccine may have contributed. It does ramp up the immune system. Shots on Dec 20 and Jan 7. I think that the symptoms started before the first shot. Pneumonia by March 20, 2021 and this time oxygen. Sucks.
I am a rural Family Practice physician, which is about as low on the doctor totem pole as you can get. I suppose I can write myself up as a case report. I am resisting because I hate reading that sort of report, much less writing it. I have tried to find a PANDAS/PANS physician. A friend says, "Find the most knowledgable one in the state." After digging for a week or two I thought, damn, I AM that physician. The US doctors currently don't believe in it in adults. Great. In Canada or Europe they think adults can have it. Well, duh, I mean it's not like antibodies go away. Our immune systems start to really fail in our 80s or 90s in some folks, but not in our thirties and forties usually.
So, my doctor is sending me to see an immunologist. She still doesn't think I have PANS and "doesn't have time" to read the guidelines*. Weird, right? Not really. At some level she has grokked that if I am right, she would be vulnerable to this too. That's why the docs all act whacked out when I go to the emergency room with pneumonia. They correctly note that there is a psychiatric thing going on, which terrifies them because they know I am a very good clinician. If I can go whacko, what about them? So they focus on the psych stuff while I am there saying, fuck the psych stuff, help me with this goddamn chest pain and I can't breathe. They are so freaked out that they can completely ignore actual lab values, Ins and outs, all of the medical stuff. That is pretty surreal. In 2012 I thought, this is so weird, I need the most creative doc in town to help me. Then I thought, I AM the most creative think outside the box doc in town and damn it, I don't wanna die. I live an interesting life.
My relationship got pretty weird in all of this too. He freaked out. He also said, "Why didn't you tell me?" I said, "You knew I got pneumonia." He said, "Yeah but the psych stuff?" I sighed. "Look, no one at the hospital believes me. I barely believe it. It is off the chart weird. How could I tell you?" He said, "I am watching it and I can't believe it either." Um, yeah. One day a week ago I thought, maybe I made it all up. I said that to him. He said, "No. You didn't make it up." Anyhow, at least I went seven years between episodes. I worried that I'd get pneumonia working for The Man. Yep. Faster than I expected, too.
I think I saw an immunologist back in 2014. But they will have new things to test for. And I am going to do the Cunningham Panel as long as either my insurance pays for it or it isn't too expensive. Back in 2014 the BRCA 1 and 2 test was $3600. My insurance then paid $3000 and I paid 600. So we will see. I should call the lab today. It would be a baseline at this point, but reading the paper about the three antibodies in lyme disease patients, the baseline rises with each infection. Lovely. I get more lizardy with each infection, har, har.
Meanwhile, some noders are thinking GTKY who the hell cares? This is noding for the ages. I am trying to figure out how to communicate about this both to patients and to physicians. Sent a letter to the New England Journal of Medicine, saying that I think long haul Covid is a PANS reaction. Rejected. Sent a query to BMJ. No response yet. Sent a different letter, essentially a rural Family Practice approach to long haul Covid, to JAMA. I'll bet they reject it. I didn't mention PANS in that letter. If that one is rejected I will rewrite it leaving out the weird diet antibody stuff and send it to the AAFP -- American Academy of Family Practice journal. I also am rethinking my approach to patients. Their eyes get that whacked out fear look when I mention antibodies, so... can treat without naming. I have all the tools I need, I just do not have a clinic. Ok, I wish I had a lab where I could do extensive antibody testing, so you dang ol noders, please message me when you are ready to be an angel investor. I'll just hold my breath until that happens.
It is a bit encouraging that I didn't have a PANS reaction with the diverticulitis. So infection alone doesn't trigger me. That or my immune system is currently exhausted and can't ramp up antibodies. Don't know which. I like the first idea better, but I am trying to be damned careful about the delta variant because #2 is also possible.
I've gotten into a discussion with a younger "super positive" thinking female physician. She is interested in ACE scores and "How to thrive with high ACE given its association with poor health outcomes is an area of deep fascination for me, and I'm sure others!" I suggested that I could be their Poster Grrl, heh. Appears she is anti-vaxx, and the power of positive thinking is gonna protect her and hers from Delta. Well. If we gonna credit God, then Jesus, thank you very much for the vaccine.
*Of course, I do not entirely agree with the guidelines, but it is very helpful to have the antibody targets named. Ah, dopamine. I am reading about it, and it can cause tachycardia. That was not in my recent knowledge bin.