Predicting medicine again: autoimmune disease

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.

Here: https://autoimmune-encephalitis.org/wp-content/uploads/2022/10/PNK-The-Known-types-and-categories-of-AE-as-of-2022.pdf

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.

Unload

I write Watching my sister die
a poem
14 years in the making

as usual
the poem goes off
in a direction I don't anticipate

I never know where my poems
will go

I just sit down
with something nagging at me

write me write me write me
NOW

and I've gotten up at 3 am
because the damn poem
won't let me sleep

that one was about
my future ex
a horse of course

Idaho Gigolo

my sister poem
takes me back
and deep
until I cry

but the ending
is reconciliation
forgiveness
unexpected

that is why I cry

I don't expect reconciliation
from a damn poem
the poems do what they want
I never know
what they will do

maybe they ARE alive

like a child
waiting for a fetus
waiting for the egg and sperm
to join

waiting to be born

wait

this poem is doing it too
damn it

but after the sister poem
I unload a huge burden
anger
and grief

and then to the facilities

and I unload there
too

so there

__________________

For the Ragtag Daily Prompt: waddle.

Do you think the seal rock is poopy? Do seals and sea lions waddle or is there another word?

Watching my sister die

I wrote this today thinking about my sister's write up "Watching my mother die" here: https://everything2.com/title/Watching+my+mother+die
Her write up is the fourth one down.

______________________________

Watching my sister die


I know before she does
but maybe not
maybe she knew
that last year

brave front
while soliciting money
on the internet
as the cancer progresses

she describes new treatments
I forget
how many rounds of chemo
she endured

eight years
from diagnosis
to death

I stop visiting
for a year
after she bullies 30K more
from our father

and he calls me crying

I give myself permission
to change
to be a physician
more than a sister

because as a sister
my sister is
cruel

she destroys my reputation
with my mother's family

or maybe they already
don't like me
because I think the family rules
are ludicrous and stupid

and I won't follow them

I suppose each generation
has someone who says
wait
these rules make no sense

why are we following these?

I think she will die
by February 2011
but there is another death
unexpected

the death of my hope
for a sister who loves me
for a sister who treats me well

for a sister who loves me

and I let that hope die
and I rise from the ashes
and I choose not to visit

and she uses this
tells people I won't visit
though I don't say I won't

people sent me checks

I sent them back
with thanks
saying

it is too soon
to leave my nascent business

my sister
stays in touch
this year

at last
in February 2012
she calls me

my oncologist
referred me to hospice
but I am not going

yes, I know
you are refusing to go

I don't saybut the cancer
is progressing
and like it or not

you will go

my sister
applies for a clinical trial
miles away

and at last
her enthralled circle
refuses

they say
we are so tired
we cannot drive you there

daily

I fly down
for a long weekend
and the hospice interview

I am excluded
but ask to step in
at the end

I ask the nurse
is this like where I live
that if there is a stroke

or a blood clot
or bleeding
or whatever horror

hospice will keep
her comfortable

but will not treat it?

yes

says the nurse

my sister stands
pushing away from the table
NO she says

I AM NOT READY

yes, I knew that

you are not going

I don't say
but you will go
willing or no

I fly down a second time
and as I leave
she cries

I am surprised

we have not talked
really

there are so many people
in and out
and I've been portrayed
as a villian

there is still time

I fly down a third time

she is angry, angry
now in hospice
angry that she is dying

I start to sing a lullaby
and she says NO

I study her
I sing Samuel Hall

To the gallows I must go
I must go
I must go

To the gallows I must go
with my friends all down below
saying Sam I told you so

damn their eyes
damn their eyes

saying Sam I told you so
damn their eyes

she smiles
a vicious secret smile

she is in renal failure
strange
says

I have to take a trip

I say yes
you do

I don't know how

You will figure it out

How will I find you?

I am surprised again
the connection is still there
buried deep

You said I can take the dragon home
the one I made in college
and gave you

You are born in the year of the dragon
you will have wings
find the dragon

and you will find me

oh, good
she says
relieved

she speaks of a bad pig

I say maybe it isn't bad
maybe it's done some bad things

she shakes her head

I say shall I take the
bad pig away?

she still is not satisfied

I guess: do you want me
to keep the bad pig
from hurting anyone else

yes
she smiles
yes

again we are alone

I am Bad she says

You are not bad
I say
You have done some bad things

Very bad

She is crying

I say I love you anyway

and she blooms
like a rose
soft in a dark orange blanket
with matching lip gloss

forgiven
and reconciled

flying home
I name the dragon
Bad Pig

and gird myself
for death

three days later
she dies

and then the fallout
and the aftermath
begins

_____________________

I will attach this to the Ragtag Daily Prompt "escapade", though I think of escapades as fun.
The escapade is the photograph. She and I were dancing before my wedding, in 2007.
I am the short one and clearly I was teasing her about something.

Sorrow never dies, quite.

Neither does love.