After Lou Carreras commented on my write up on autoimmune disease, I thought I would do more research. The article above https://theworlddata.com/autoimmune-diseases-statistics-in-us/ shows an enormous increase in autoimmune disorders in the last twenty years. Also, I canβt tell if they include fibromyalgia, chronic fatigue, long covid and the encephalopathies. The first three can be ANA and ESR negative. To me that means that we have not found a good inflammatory marker for these disorders. It is certainly not that they do not exist.
The data is a bit overwhelming and horrifying. I know too many people with connective tissue disorders and those were very very rare when I was in medical school (1989-1993). Not nearly as rare now and all the people I know are young.
I stand by what I wrote and this reinforces it: as a culture and world we have to back off from the high sympathetic nervous system fight or flight.
And today, Formula One racers are driving around the mall and Washington, DC. So what do I think of that? Imbecilic, toxic, dangerous. Which egotist set that up?
Once again here I go out on a limb. Here is my prediction for the next Really Big Thing in medicine, which is already happening. It is slowly rising from the murky swampy depths of our unconscious.
Autoimmune encephalitis? Or encephalopathy? What a mouthful. And what the hell?
Well, we have always said that we do not know the causes of depression, mania, schizophrenia, psychosis and all the other psychiatric diagnoses.
And now I think we know, though we don’t have them all sorted yet.
The cause is the immune system. And what’s more, it’s adaptive.
“NO!” (you run screaming from the room). “Not MY immune system! NO!”
Yes, I say, your immune system, my immune system, everybody’s immune system.
WHY? Well, my version shuts me down. I get tachycardia (a fast heart rate), short of breath, accusations that I am manic, my fast twitch muscles don’t work and I get pneumonia. And it lasts longer each time. Two months. Two months. Six months. A year and a half on oxygen and then off but really it took four years before my muscles started working right again. It shuts down my fast twitch muscles but not my slow twitch muscles.
So how is shutting me down adaptive?
Think. If there is a pandemic, or huge danger, or someone is trying to harm me, it isolates me. People think I am very very weird when it is happening. So I isolate, to protect myself. Isolate and voila — protection from pandemic. If I have resources, and luckily I do have resources, I can hole up. Food, drink and a broadband connection.
The book Brain on Fire and movie are about an encephalopathy: antibodies to NMDR that made the author psychotic until it was recognized and treated. I went to a virtual continuing medical education on encephalopathy in 2022, I think. In the US alone, there were already 555 patients identified with NMDR antibodies.
Now there is a whole list of antibody encephalopathies, many associated with cancers. Not all.
A physician friend calls me a few years ago. “Have you heard of NMDR antibody disorder?”
“Yes,” I say
“I have a patient with it,” she says. We are a county of 32,000 people. Rural. She is looking it up. I tell her what I know.
In January I see a patient who turns out to have Anti-Caspr2. I have to look it up. Now I see the list of encephalopathies that is rapidly becoming longer and longer.
I think that chronic fatigue, fibromyalgia and long Covid fall into immune system disorders too. Just because we haven’t figured out the mechanism: well, we may. If we don’t destroy the planet first.
I also have reservations about treatment. We are using more and more immune suppressants. I read about one that stops B cells from working. Specifically, the B cells that produce antibodies. Well, that would work for my disorder, except, I already get pneumonia really easily. And destroying the B cells lowers immunity and increases the risk of infection.
I see a patient in clinic who has a skin infection and a fever and an autoimmune disease. They are on an immunosurpressant that I don’t know much about. “Have you called your rheumatologist?”
“No, why?”
“I think you are supposed to stop the immunosupressant. Please call them today. And let me know what they say. Please!” I start antibiotics.
The patient sends a MyChart message. Yes, stop the immunosupressant while on antibiotics. In the future they will call the rheumatology office as well as seeing the clinic for any infection.
I am not saying we shouldn’t use immunosupressants. Sometimes we have to. Rheumatoid arthritis. Hypothyroidism, the most common autoimmune disease, yes, we should and do give outside thyroid hormone. But there is something else we need to do.
The clues for this lie with chronic fatigue and fibromyalgia. What triggers them? One in ten severe infections, severe stress, or a combination.
So we need to learn as a culture, as a world, as humanity, to lower stress. We can’t be high sympathetic nervous system fight or flight high achieving high spending higher faster crazier all the time.
Here is to the parasympathetic state. That is where we need to go. Go down, slow down, be kind to each other and ourselves, be gentle, laugh, fail, lie in a hammock, watch silly cat videos and fat bear week. Then the immune system might calm down and not attack us to save us. I think the immune system is pretty smart, really. Even as it pisses me off and limits me.
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