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.
Here are clues: https://my.clevelandclinic.org/health/diseases/autoimmune-encephalitis
https://www.mayoclinic.org/diseases-conditions/autoimmune-encephalitis/symptoms-causes/syc-20576380
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.
I like the addendum “as of 2022”.
and here: https://www.nature.com/articles/s41572-025-00650-1
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.
Go down, slow down.
Blessings and peace you.
I’m curious about what sort of labs you’d run to diagnose an autoimmune condition.
When I was in Kent, they actually had an encephalopathy lab panel. Totally depends on symptoms, right? Is the brain inflamed, or joints or thyroid off or am I worrying about connective tissue disorders or MS or what?
A diagnostic puzzle then.
I am working on the follow up. Looked up what percentage of the US population has an autoimmune disorder and is it rising? Guess the answer.
I’d assume that it is rising, aand I wouldn’t be surprised – stress, environmental pollution, and other factors. If the interplay of factors is subtle It might be almost impossible to track.
You gots it. More to come.
The classic ones are the ESR and CRP, but those are not elevated in fibromyalgia and chronic fatigue or my personal weird shutdown illness.
In my last reply I said it was like a puzzle, but it seems to be more of a diagmostic enigma.
I’m not a doc or a scientist but I agree with all of this (that I can understand) and the conclusion 100% and I CAN understand it. Thanks for writing this.
Bless you, Martha!
I was worrying that this was too scattered, so you give me great comfort!
I’m glad, Katy.