I get good news yesterday.
A call from the Immunologist. "All of your tests are reassuring. You have mounted an antibody response to Covid-19 and to your pneumonia vaccines. In fact, you have the best response to Covid-19 of anyone I've tested."
Wow. Ok. Still risky to travel, will double mask, oxygen, and eye protection, BUT that is reassuring.
So wait, says my daughter, do you lose your disability?
Hell no, I say. The immunolgist has NOT answered the question: WHY no white blood cell count elevation and no fever with three pneumonias and the diverticulitis this summer. I still get pneumonia. Basically what he did not add was "I have no idea what the hell is wrong with you." Heh. No "overarching diagnosis", as the cardiologist says I need. Because he and all the others dislike the PANS/PANDAS one.
And the immunologist says, "I don't know anything about PANS/PANDAS." And again, I think he will not look it up. I think that is WEIRD. But apparently I am the weird one in this. I went into Family Practice because I am a generalist. I want lifelong learning. I want to learn daily. I look up EVERYTHING. And when my patient has some new weird thing, I look it up.
It completely floors me that other doctors do not look it up. Pediatric autoimmune neuropsychiatric syndrome. Ok, so the immunologist and the cardiologist basically said, yeah, I do not do pediatrics. My primary did not look it up even though I was her patient for SEVEN YEARS. I fired her when I realized that, because HELLO. I would have looked it up the minute I had time. Geez Louise. All of these doctors are staying in their wheelhouses, where it is safe. They don't want to venture anywhere new. So this is like the opioid medication assisted treatment: the local county doctors refused the training for a DECADE after I did it. Too new, too weird, we'd have to change. I was amazed at the level of resistance.
And my career makes me weirdly equipped to study this:
1. Undergraduate degree BS in Zoology and Scandinavian Studies with Honors. UW Madison. I am a Badger, heh.
2. Work at the National Institute of Health as a lab tech for 2.5 years in the National Cancer Institute under Steve Rosenberg, using interleukin 2 and Tumor Necrosis Factor to activate white blood cells from patients with renal cell carcinoma and melanoma to cure them. Worked for one in three patients, complete cure.
3. Medical School Richmond Virginia and residency in Portland, Oregon at OHSU. OHSU has special dispensation to do a ten week rural rotation, so ten weeks away from our "continuity" clinic patients. When I did it there were three sites: Pendleton, Enterprise and ----------. I went to Enterprise. Enterprise had four male doctors who ran a small rural hospital. They stuck us in the call rotation.
4. For jobs, I wanted rural, partly because of my exchange to Denmark in 1978. I lived in Bramminge, only 5000 people. I rode the train to Esbjerg to go to gymnasium. I loved watching my Danish father with the town: he was mayor, furniture factory owner and friend and he'd change hats as needed. He was amazing.
5. Alamosa, Colorado for three years. Rural obstetrics that was heavy, and a lifeflight took a minimum of 4 hours to get to us by fixed wing. You have to really really think ahead. I was good at it.
6. The Pacific Northwest. Still obstetrics for another ten years but now the geriatrics is heavy. And addiction, methamphetamines and heroin. Being raised with both parents alcoholics and starting to read about addiction ten years before I go to medical school is enormously helpful. I recognize addiction in people, with very high accuracy.
7. Buprenorphine: this teaches me about the opioid receptors. This medicine is BOTH an agonist and at higher doses, an antagonist. It BLOCKS the receptor at higher doses. This then is extrapolated when I learn about the antibodies in PANS/PANDAS.
8. And of course, having PANS/PANDAS and refusing to take drugs that make me feel sick, well, highly independent and oppositional defiant. Heh. The proof that this is good for me is that I am not dead yet.
So, judging by my local emergency room, the local primary care doctors and specialists, including UW and Virgina Mason, the level of resistance to the idea of chronic fatigue and fibromyalgia being a PANS/PANDAS reaction in at least some patients, is going to be huge. We don't know what "causes" behavioral health disorders either, right? They say "brain chemical imbalance" but all that really means is that you have less serotonin between the neuron and receptor if you are depressed then a person who is not depressed. Or less dopamine. If it is antibodies, that will change medicine. You read it first here, on an obscure website from a rural female physician, a family practitioner. Ha. Take that, patriarchy.
Anyhow, like the whole h. pylori thing, I think it is the patients who will change this. If they hear about it and take the instructions to their providers, and it works.... well, that is how the h. pylori treatment finally was accepted. It took decades. I had better stay alive for a while. I'd rather, I want to see grandchildren. But anyhow, I trust you noders to disseminate this if I croak.
Thanks.
Meanwhile I'll work on this.