adaptive theory of PANS/PANDAS

This is my working theory on PANS/PANDAS. Pediatric autoimmune neuropsychiatric syndrome/Pediatric autoimmune neuropsychiatric disorders associated with Strep A.

Four or more antibodies. The antibodies can take different patterns in different people.

  1. Antibodies to dopamine 1 and dopamine 2 receptors.

The antibodies are like keys fitting in a lock. The key may fit in the lock and BLOCK or fit in the lock and OPEN IT. So, there are a very large number of patterns that could arise from this, especially when we remember the rat neuron with 300 different receptors for serotonin in one neuron. Think of the possibilities here.

If this antibody BLOCKS, an ANTAGONIST, it will cause slowing/brain fog/depression/and I don’t know what all.

If this antibody is an AGONIST and the key turns, it apparently can cause mania, ADHD, OCD, oppositional defiance, clinginess, separation anxiety, anxiety, etc.

We do not know what causes psychiatric disorders. Now we have a category called neuropsychiatric, where it is caused by an antibody. Or antibodies. What percentage of psychiatric disorders are caused by this? I am betting high rather than low.

  1. Antibodies to tubulin.

If the antibody is an ANTAGONIST, blocking, then slow or fast twitch muscles won’t function correctly. It could block both. I think if it blocks both, that is the severe lie in bed chronic fatigue. I have trouble with my fast twitch muscles but my slow twitch ones work just fine.

If the antibody is an AGONIST, you get some super athletes. I know a number of people that I would suspect fall into this category. I can name five off the top of my head, friends.

  1. Antibodies to lysoganglioside.

This one worries me. Lysogangliosides lyse ganglions. These antibodies are used in soap making, among other things. They break down fatty cell walls.

When I have a high antibody level, I have trouble eating any carbohydrates. As I improve, I have trouble mostly with sucrose, fructose and gluten but not lactose. Also, when I eat gluten, I get acidic. When you get acidic, your body tries to compensate by slowing your breathing to hold on to CO2, because you need to balance the acid H+ with a base, OH-. So: triple whammy. Acidic I automatically breathe slower, which is not helpful when I am already hypoxic and tachycardic.

I have not figured out whether my antibody is an agonist or antagonist.

An agonist would lyse more ganglions. This could be bad for the brain and for peripheral nerves. Neuropathy and dementia.

An antagonist would stop ganglion lysing. Um, in theory, cancer. Lysogangliosides are supposed to clear out bad cells.My guess is that I have an antagonist because of the family history. At least, on my mother’s and sister’s side. My father smoked two packs of Camels for 55 years and did not get cancer: tough bugger, right? Or did he have an Agonist? This line of thinking makes me very highly motivated to eat in whatever way the antibodies want me to. I do not understand why gluten would trigger this and why the gluten effect in me lasts longer than the fructose and sucrose effect. Gluten intolerance and other gut problems are on the rise and this would certainly explain that. This is the cause of at least some fibromyalgia patterns. Not only does eating gluten screw up my breathing, but it makes any muscle that I have used recently hurt like hell. I ate some meatballs without reading the stupid package back in April. Two hours of chest wall muscle pain and honestly, heart pain. I dug the package out and duh: bread crumbs. Gol dang it, I hate it when I am stupid. However, it hurts like hell but at it’s worst I had normal cardiac enzymes and no heart attack. Weird.

Ok, but WAIT, you said ADAPTIVE. How can this nightmare be adaptive?

Sure, adaptive. Remember the back up system for when we are starving? We switch from metabolizing glucose to metabolizing protein and fats, our own if necessary. We go from glycogen metabolism to protein/fat metabolism which produces ketones.

This is the crisis shit hits the fan emotionally and in plagues system.

So, can be caused by stress or infection or a combination.

Why why why?

Because if the stress gets too high or the infection gets too bad, our body switches gears and runs a back up system. I’ve thought of chronic fatigue as some sort of switch the body throws for years, because it’s the hypercrazy work too hard workaholic Type A people who get it. Type B people do not get it or don’t notice or don’t care. Type B people just say, wow, I’m tired, I think I will rest. The Type A people flip out and say “Put me back like I was!!!!” and then they go to 47 doctors and refuse to do anything the doctors say and do internet research and see any kind of quack you can imagine and they are the most exhausting patients.

Why the psychiatric stuff? Ok, take mania. If there is plague or you are in a really dangerous abusive situation, mania suddenly makes sense. Overnight you are different and what’s more, it scares the hell out of everyone. You are shunned. You are alone. You may get thrown out of a job, family, friend group or all of the above. This would tend to protect you against both plague and the really dangerous abusive situation. Whether you like it or not.

And how clever of the brain/body. Here is a back up system. It changes at least four systems, so you are now a different person. You freak your employer, friends and family out. AND you are sick as shit and they won’t listen. You have to get out and go elsewhere for help or hide in your castle or house or whatever. You can’t move or you have super muscles. And every single person has a different pattern.

I look at the long haul covid. The most common symptoms are psychiatric, shortness of breath and fatigue. Sound familiar?

Now, will someone PLEASE fund my NIH west?

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Guidelines for treating PANS/PANDAS: https://www.pandasppn.org/jcap2017/

werewolf

Time out word warning, in this poem. This poem is about discrimination. Substitute practically anything for werewolf…. disabled, bipolar, depressed, autistic, substance abuser. I am sick of discrimination. For human, substitute “normal”.

You know I’ve been a werewolf my whole life

Started in the womb
triggered by antibodies
to tuberculosis

And I am tired

of people telling me

I’m a werewolf.

Ok? I fucking know that.
I have known it since Kindergarten
where I arrived full of joy
ready to sing

and was shunned

we didn’t have a television

but I knew that wasn’t really it
I was different
I am different

and fuck you humans
different is ok.

I am a werewolf
and I am fucking proud
of all I have accomplished
in the teeth of humans hating me
and trying to shut me down
and shunning me
and reporting me
and doing everything short of shooting me
with real guns

I’ve been told to sit down
shut up
stop arguing
be nice
be good
go away
die
don’t read my writeups
don’t C! my work
don’t talk to me
stop making waves
been fired
been reported
been shunned
been alone

and fuck you humans

get ready
because I am middle aged now
for a werewolf
and I am ready

to be one all the timee

damn the torpedoes
full speed ahead
fuck you humans
for how you’ve treated me

I’ve turned the other cheek
for sixty years

and now
I
will
fight

released like stars

I have had strep A sepsis and pneumonia twice. It was terrifying and I ended up having to take care of myself. I would be dead if I was not a physician.

Not to be named obscure website helped to sustain me, because it was a place I could go while I was alone, terrified and very very ill. The bout in 2014 took me out of clinic for six months and then I was barely able to work seeing half my usual number of patients. My local hospital refused to help me, but other people did. I am deeply deeply grateful to the people who did help me, including people on everything2.com that I have never met.

I wrote this in June 2014.

released like stars

________________

My sister used to tell me

β€œEverything2 is like a brain.

That’s what attracted me.

All the nodes, like neurons

Connected to each other more and more.”

Or something like that.


Isn’t it annoying?

Now that I’ve taken that memory out

Dusted it off

Embellished it

Who knows what she really said


Flashes of light now

And some where I blank out entirely

For just a moment

Only when I’ve eaten

I’m still avoiding carbs


Could be absence seizures

But she said seizures hurt

These do not hurt

And are accompanied by muscle twitches

Or muscles rolling gently across my frame


I am scared at first

Because I think they are neurons

Bursting into brain flame

And burning out

Brief candles


But I don’t think that’s right either

I think it is plaques

Deposits of antibody

Small pushpins in the wrong place

Being released like stars

Feathers

This is the final poem in my Falling Angels Dream Poetry series.

Some people say there are

Angels among us

I have faith in birds
I search for a nest
Hummingbird nest
the size of a nut
tiny, lined with spiderwebs
I love the herons too
great blue heron
flying lands in a tree
above me
I look through my mechanical eye
zoom in click click
and there is another
at the tree top
two in a tree
I move around
and there – one drops down
one flies
I am not distracted
a nest
a six foot nest
blessed
I move away gently

I wander back by the tree
gently
in the morning
in the evening
not one
not two
two in this tree
two in that
one in another
as many as five in a tree
six foot wing spans
a rookery of winged beings

angels among us
and why would we think
they would look like us?

ring

I dream a night sky thick with stars

all the stars start falling

I think “That isn’t good.”
sore afraid

all the stars are angels falling

I think “That isn’t good.”
sore afraid

an angel falls close past me
in space
face at perfect peace

I think “Why do they fall?”
sore afraid

I am falling in space
head down
no earth beneath me
with the angels

crying, imperfect acceptance
sore afraid

I wake
I put the dream away

it comes back
in a decade

I write about wings
sore afraid

I try to understand
sore afraid

I am asked what my small self
my child self
wants

wings

I say yes
no longer
sore afraid

did you hear the bell?

yes

hold me

poem: hold me

hold me, Beloved

hold me
I long for you
to be reunited with you, Beloved

to return to you

it is the children who hold me

here

the children
my children, grown
the hope of grandchildren
the damaged children
the new and young children
the old children in adults
who are so sad

it is the children who hold me

here

sometimes I am so sad, Beloved
I long for you

I do and I don’t
long for you
to call me home
and hold me

I know
that you hold me, Beloved
every moment

even when I cannot feel your touch

I know, Beloved
you will call me home

and hold me
now and forever
in your infinite embrace

Straddle this place

Straddle this place, where we look at history again and again, admit horror and mistakes and cruelty, and work together to build a future.

For the Ragtag Daily Prompt: straddle.

No pandas

Today is PANS/PANDAS awareness day. I wrote this a couple weeks ago.

PANDAS PHYSICIANS NETWORK: PANS/PANDAS AWARENESS DAY

___________________________________

No pandas

I don’t have PANDAS because in the United States we barely believe in it in children and we don’t at all in adults.

I don’t have PANDAS because even though one psychiatrist said I did, he retired, and the next one says I don’t. Then not sure then no. They don’t agree.

I don’t have PANDAS because my primary care doctor won’t read the guidelines even after I have been her patient for seven years.

I don’t have PANDAS because my pulmonologist has never heard of it.

I don’t have PANDAS because it would be a lot easier to put me on a mood stabilizer to shut me up than listen to me.

I don’t have PANDAS because I am labelled difficult because I am afraid to take a mood stabilizer because I do not get a fever or a white count so my main symptom of infection is that other doctors think that I am manic though I am hypoxic and short of breath. They want to fix my mood while I want to not die of pneumonia, so our goals are at odds.

I don’t have PANDAS because I am a doctor and if I had PANDAS my fellow local doctors would feel guilty that they have told each other that I am bipolar and manic for the last 18 years and have shunned me at the county medical meetings and won’t even send me the invitations, except for the one that forwards them. He says he has given them my email and he doesn’t understand why they don’t send me the invitations.

I don’t have PANDAS because Seattle Children’s doesn’t allow the Cunningham Panel to be drawn and they say there is not enough evidence yet.

I don’t have PANDAS because I can’t afford to pay $925 on my own for the Cunningham Panel and anyhow my antibody level is back to whatever is my new baseline, higher than before no doubt.

I don’t have PANDAS because the other doctors are frightened: if I have PANDAS then who else does and if I have chronic fatigue caused by hypoxia and fibromyalgia and it’s related to PANDAS then who else would they have to test and neuropsychiatric is a whole different thing from psychiatric and we swear that we don’t know what causes chronic fatigue and fibromyalgia.

I don’t have PANDAS because I am an adult who lives in the US though if I was in Canada or Europe I could in fact have PANDAS.

I don’t have PANDAS because in the United States we barely believe in it in children and we don’t at all in adults.