Category Archives: adverse childhood experiences

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Covid 19 long term and PANDAS

It is not looking like I will be able to return to medicine. Based on the current research, the PANDAS reaction will get worse with each infection. I will be moving in to a hamster ball next week, (*&^*&(*&*&^.

You, gentle reader, can work your way through the research, which I am going to present to you. You have no reason to do this unless you have chronic fatigue, fibromyalgia or myalgic encephalopathy or post covid syndrome. Or you know someone with one of those. I think there are a few people out there.

First, read the guidelines for treating PANS/PANDAS.

https://www.pandasppn.org/guidelines/
https://www.pandasppn.org/jcap2017/

The article about the three antibodies involved is in this section:
https://www.liebertpub.com/doi/full/10.1089/cap.2016.0148

“Evidence for group A Streptococcus (GAS)-specific cross-reactive antibodies having affinity for neuronal components (including receptors) in the basal ganglia has been demonstrated in human and animal studies (Husby et al. 1976; Kirvan et al. 2003, 2006a, 2006b, 2007; Hoffman et al. 2004; Yaddanapudi et al. 2010; Brimberg et al. 2012; Lotan et al. 2014). Sera and immunoglobulin G (IgG) from SC and PANDAS patients known to bind to components of the GAS cell wall have also been shown to cross-react with components of neurons in the basal ganglia caudate, putamen, and internal segment of the globus pallidus (Kirvan et al. 2006b). Antineuronal IgG antibodies binding to multiple targets, including lysoganglioside, tubulin, and dopamine receptors, have been reported to be elevated in patients with SC and PANDAS compared to controls (Kirvan et al. 2003, 2006a, 2006b, 2007; Cox et al. 2013, 2015). Targeting of such antibodies to dopaminergic neurons in the substantia nigra and ventral tegmental area in the basal ganglia (as well as other cortical neurons) was confirmed in transgenic mice expressing a chimeric antineuronal autoantibody containing VHΒ±VL regions cloned from a patient with SC (Cox et al. 2013).”

All right, three antibodies. So WHAT, doctor?

The antibodies are to dopamine, tubulin and lysoganglioside.

Here is an article looking at chronic lyme disease.

https://www.sciencedirect.com/science/article/pii/S2666354619300158

Basically that article looks at four groups. No lyme disease, one episode, more than one and chronic. No dopamine antibodies. But the tubulin and lysoganglioside antibodies are not present in the healthy folks and are present in the lyme folks, highest in the chronic lyme. Those two antibodies are associated with chronic fatigue (the tubulin) and fibromyalgia/gluten and sugar intolerance (the lysoganglioside).

Now wrap your head around that one in ten severe infections can trigger chronic fatigue. ANY INFECTION. I am normal, I just bloody well got antibodies early because my mother had tuberculosis through the whole pregnancy. So I was born with PANS. Then, smartied that I am, I chose to be a physician, meaning I get exposed to infections. Guess I am not going to be doing Doctors Without Borders, right?

Treatment, well, that is complicated. I think it depends on the person’s profile: which antibody is giving them the most trouble. I am a special case, because I have all of the antibodies firing full bore at once. Which has forced me to be extremely creative about how to survive this now and in the past.

First off for the treatment: DO NOT PUSH THE CHRONIC FATIGUE. Because the tubulin is damaging not just skeletal muscles but the heart muscle as well. So even with squeaky clean coronary arteries, pushing through the chronic fatigue could trigger a heart attack or broken heart syndrome. And we aren’t (yet) measuring these antibodies routinely. Hell, I hadn’t heard of tubulin since the distant mists of college until 2 weeks ago.

Secondly: if there are neurological symptoms, that is, any two or more of manic/word finding difficulty/ADHD/OCD/emotional lability/oppositional defiance/clingy/brain fog/yeah I forget the rest, then the anti-dopamine antibodies are present. In addition to speeding the thoughts, I think that they speed cell metabolism. I always drop ten pounds the first week. So, vitamins are vital. If your vitamin K drops, you may clot. Also vitamin D for teeth and vitamin B12 — if it’s low you can get Guillain Barre. The myelin sheaths unwind. Ok, that could also be thiamine or folate or all three. Bleeding strokes from low vitamin K.

Third: I don’t know if it’s just me, but the things I have to change in my diet are NO SUGAR and NO GLUTEN. I tried rice yesterday and it was ok, so I think it’s gluten and not just all bread/rice/potatoes/pasta. I have mostly been eating meat or cheese with kale/collards/mustard greens/parsley or turnip greens. All of which are vitamin rich. I have not had bread in three weeks and have been not even eating much fruit. Blueberries and grapefruit are safest. In two of my bouts of this, with strep A pneumonia, I would have fluid shifts when I ate sugar or gluten. Normal urine output is up to 2 liters. I had 10. That was documented in a 24 hour inpatient observation, though the doc did not actually notice. I did. I also figured out how to get it to stop, by stopping carbohydrates as much as possible. Greens only, because they are food sources of vitamin K. At any rate, it’s worth a try for other people. I use electrolyte tabs with fluids too, NUNN tabs or Airborne.

There’s other stuff. But I am tired and my chest hurts. Take care of yourself and each other.

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The Brewer’s Big Horses

This is one of the Songs to Raise Girls, songs that I learned before Kindergarten. A very weird list of songs.

This song comes from my maternal grandfather. My mother said that it was a Congregationalist temperance song….

The photograph is Morris D. Temple and his grandson, F. Temple Burling. F. Temple Burling is my maternal grandfather. I am related to Temple Pumps. According to my mother’s stories, Morris Temple was more interested in Japanese art than in Temple Pumps and the company eventually folded. I don’t know if that is true, or if it was a different Temple then Morris. However, my middle name is Temple.

This song is one that I don’t have memorized, though I know the tune. I have my mother’s handwritten lyrics, with her drawings framing it. There is a tape of my grandfather singing it in the Library of Congress, according to my mother. I would like to go listen to it some time.

I’ve copied it just how my mother wrote it out. There might be an issue about political correctness, but I have a picture of Morris Temple in the 1860s, in his civil war uniform, with a sword. You will have to wait for that post to see which side he fought for….. I presume that my mother wrote it down as she was taught it. I am not sure who talked like this in Iowa in the 1880s, but maybe it was most people.

The Brewers’ Big Horses

O, the brewer’s big horses, comin’ down de road
A totin’ along old Lucifer’s load
Dey step so high and dey step so free
But them big horses can’t run over me

Chorus:
O no! boys O no!
De turnpike’s free where ever I go
I’m a temperance ingine don’t you see
So them big horses can’t run ovah me
Repeat with “toot toot toots”

O de liquo’ men been actin lak de own de place
A livin’ off de sweat o’ de po’ man’s face
Dey’s fat and sassy as dey can be
But deir big horses can’t run ovah me

Chorus

I’ll harness dem horses to de temperance cart
I’ll hit ’em with the gad fo’ to give ’em a start
I’ll teach ’em how fo’ to haw an’ gee
So them big horses can’t run ovah me

Chorus

It took me a while to find this song on the internet. It is listed in temperance songs in wikipedia: https://en.wikipedia.org/wiki/Temperance_songs and is mentioned in The Christian Advocate under lyrics: The Brewers Big Horses. It is listed as written in 1913 by JB Herbert and HS Taylor. Isn’t it interesting that Budweiser still uses the Brewer’s Big Horses in advertising?

Again, this is a song I was learning way before I know what a brewer or a turnpike was. My parents stopped singing a bunch of songs when they realized that I was memorizing all of them. They did not want me singing certain songs in Kindergarten.

They did not need to worry. I shut up when I got to school, because no one wanted to sing and no one knew the songs. They all talked about television and we didn’t have one.

I was very disappointed in school. Not enough singing and it was lonely.

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biotics explained

Are you confused about BIOTICS? Is your neighbor taking more Mysterious Healthy Pills than you? We can help! We are marketers posing as scientists from Mega Super Good For You and the Planet CoreValuePoration! Look! We have white coats and ours are clean!

PROBIOTICS: These are GOOD and GOOD FOR YOU! You should take them, you should take ours! We have capsules and we stuff them full of good-for-you biotics. We don’t call them bacteria, because bacteria are gross and yuky and cause infections. You know ours are best because they are the most expensive, the health food co-op sells them, and they have to be refrigerated. Take one everyday! You can never have too many biotics in the teaming mass of millions in your gut!

Conbiotics: These are BAD FOR YOU! They are sold by the other companies. They lie. They get biotics from prisoners poop. They will turn you criminal. They will make you fight with your mother and disinherit your first born, lie, drink too much and cook meth. You will know they are conbiotics because they are cheaper and not refrigerated. And some of the biotics in their tablets are bacteria! Do you want to take bacteria? DEAD BACTERIA, they don’t even give you live ones.

Antibiotics: THESE KILL PROBIOTICS. BY THE MILLIONS. THESE ARE PASSE, OUT OF FASHION, EVIL AND YOU REALLY DON’T WANT THEM (unless you have strep throat or pneumonia or sepsis, and even then, the antibiotics suck because the sepsis mortality rate is 28-50%, THAT MEANS HALF THE SEPSIS VICTIMS DIE EVEN WITH ANTIBIOTICS, DOES THAT PROVE THEY SUCK OR WHAT?)

UNCLEBIOTICS: Now MEGA SUPER GOOD FOR YOU AND THE PLANET COREVALUEPORATION is developing THE NEWEST AND BEST BIOTICS OF ALL! UNCLEBIOTICS ARE BETTER THAN ANTIBIOTICS BECAUSE THEY ARE MALE AND UNCLES ARE MORE FUN AND RARER THAN AUNTS AND THEY ARE WAY LESS LIKELY TO HUG YOU INTO WEIRD SMELLING BOSOMS, except that uncle that wears the boa and the weight lifter uncle, too many illegal steroids, he has fine manboobs.

SUBSCRIBE TODAY TO OUR MONTHLY POOBIOTIC, WE MEAN PROBIOTIC SERVICE AND YOU WILL RECEIVE FREE SAMPLES OF UNCLEBIOTICS AS FAST AS WE CAN GET THE UNCLES TO POO AND THE RATS TO SURVIVE THE CAPSULES.

All ingredients generally recognized as safe http://www.fda.gov/Food/IngredientsPackagingLabeling/GRAS/, you should listen to us, don’t listen to your mama, she says “Don’t eat poo!” but what do mamas know, Mother’s Day is so OVER for the year and we have WHITE COATS!

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patience

The Ragtag Daily Prompt today is patience. We still have some fog. We hope for clear sailing. We hope the fog bank will shrink. Right now we can see what is under it and avoid it. Patience, patience. Mask and immunize, please, please, push back the fog.

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Mother/child art

The photograph is me and my younger sister on our mother’s lap.

I have a collection of mother/child art. I think it’s because I was born in a tuberculosis sanatorium, because my mother coughed blood at eight months pregnant, and I had to be passed around while she got well. I went back to her at nine months. I acted pretty independent at that point and was not very trusting of adults.

I am taking photographs of the mother/child art for this part of my blog.

I can’t attribute this photograph. I don’t know who took it. Both of my parents and my sister are dead, so I cannot ask.

It might have been my grandfather, but I don’t know.

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Quota

Quota

honestly
I feelΒ despair
when I try
to think about the newΒ schedule

Twenty four slots
Of 20 minutes
See three people
For 40 minutes
Twenty on the schedule

UnansweredΒ questions
Wake me on Sunday morning
If I am called to a labor patient
Must I make up that clinicΒ face time?
What ofΒ holidays?
The clinic is closed.
Night callΒ is nowhere addressed
Will they hire more and more
Who don’t take call
Until I am the last woman standing
Red rimmed eyes staring
Numb with fatigue

What of my nearly deaf patient
WhoΒ reads lips
May we take forty minutes?
All the fairly deaf elderly?
New parents, anxious
Questions pour out like
Coins from a jackpot win
What of the tearfulΒ brokenhearted
And anxious?
I shrink at the thought
Of crushing their hearts
Into twenty minutes

And what if I’mΒ sick?
(sick leave & vacation all one)
It’s not aΒ holidayΒ if I’m on call
No make-up day off
If I cancelΒ clinic
For illness
Do I make up those days
A quota of patient face days

I am in theΒ factory
TheΒ mines
People are the shirts I must sew
TheΒ tons of coalΒ I must load
I mustΒ meet a quota

Doctors die younger
Our life is measured out
InΒ patients
I won’t let theΒ quota
KillΒ my love

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Aces again

I am singing: “You are coming up ACES!”

Ok, but, hopefully not. Because I am talking about ACE scores, Adverse Childhood Experiences. See the CDC website, this is all based on a ginormous Kaiser study in the 1990s.

Here: About the CDC-Kaiser ACE Study |Violence Prevention|Injury Center|CDC

Yep. A very very interesting topic for a rural family practice physician.

For the Ragtag Daily Prompt: ACE.

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love poem to the monsters under my bed

I am trying to wrap my mind around an aspect of Adverse Childhood Experience Scores. Ace scores.

Raised in war or chaos or an addiction household or a crazy household, kids do their best to survive and thrive. I acknowledge that first. “You survived your terrible and terrifying childhood. You are amazing. You have crisis wiring in your brain. You had to wire that way in order to survive.”

And what does that mean? High alert, high adrenaline, high cortisol, reactive. One veteran says that the military loved him being able to go from zero to 60 instantly.

“Yes, and how is that serving you now?” I ask. “Do you want to change it?”

“No.” he says.

“Why not?” I say.

“Because I know I can protect myself.”

He can protect himself, as I can too. But being on the alert for a crisis, being good in a crisis, being able to fire up like a volcano, is that what I want and is that what he wants? If not, how do we change it?

I think of it as being able to see monsters. Other people’s monsters. My crisis childhood wiring is to pay attention to the non-verbal communication: what people do not what people say. The body language, the tone of voice, what the person is not saying in words, when someone is being polite but the body language is a shut down, a rejection, a dismissal, posturing, aggressive, they don’t like me no matter what the words are, belittling. But if I or my high ACE score patients respond to the body language and emotional feeling, we have named the monster. And the person is being “polite” and will not admit to the monstrous feelings. Those feelings are unconscious or at least the person does not want to admit if they are at all conscious.

In clinic I have learned to dance with the monstrous feelings. I don’t always succeed, but I keep leveling up. It’s a matter of delicacy, inviting the person to admit the monstrous. Some do, some don’t, some don’t the first time or second or third, but the fourth time the monsters are brought out. And they aren’t monstrous feelings after all. They are normal. All I do then is listen and say that the feeling sounds normal for what is happening. It’s like letting off a steam valve.

So how do I and my high ACE score folks learn to do this in social settings as well? When someone is talking to me with a monstrous feeling, meanly, I challenge it. Because I am not afraid of that monstrous feeling. But I have then broken a social contract and the person will like me even less then they already did. And maybe that monstrous feeling is not really about me at all. It’s about their own current life events and the feelings that they try not to feel, are ashamed of, are afraid of. It’s not polite of me to challenge that feeling in a social setting, I am not this person’s doctor or therapist and they didn’t ask me. It’s hard because I feel so sorry for the monstrous feeling and for the person feeling it. I am moving to compassion and love for that feeling rather than taking it as directed at me, taking it personally.

That is my intention. We will see how well it goes.

A naturopath told me to have the intention to release old grief. It’s not old grief though. It’s ongoing grief. Grief for all of the monstrous feelings that swirl around daily and the monsters that are not loved. Most people try to ignore them. I don’t. I love them, because someone has to and because they are so lonely and sad. They are crying. Don’t you hear them? That’s what love is, when you can love your own monstrous feelings and other people’s too.

And our own are the hardest.

ACE study: https://www.cdc.gov/violenceprevention/childabuseandneglect/acestudy/index.html

I took the photograph in the Ape Caves, the lava tube at Mount St. Helen’s.

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cracks

For the Ragtag Daily Prompt: fault.

I realized last night that I had not put up the prompt, and got back up to do it. My daughter called while I was thinking and told me about segmentation faults. I wrote the poem this morning.

cracks

people talk about me

whisper gossip
social skills aren’t right

they only see now

I had to grow in cracks
hold on tightly
find nourishment where I could
not fall
survive

if they could see my roots
if they could see
where I had to grow
no choice

maybe they would be kinder

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new again

I get to start again

I have always seen the monsters under the bed
I have to
to survive

you don’t tell people about their monsters

I learn that early

they get angry hit punish send away
and anyhow they leave you even if they love you

when I am alone
we play
the monsters and I

they are so happy to be seen

they cry often
why doesn’t he love me?
why won’t she hold me?
why does he throw me out?
why?

I hold them
dry their tears
cuddle them
wrap them warmly

they cheer up
and play

they never forget
they alert
their person is near
they rush back

sometimes one rejected
returns with seven friends
hoping to storm the person

that doesn’t work

the monsters never lose hope
never

sometimes I see
a person see their monster
let it be conscious
the person is grown enough
to love

I am so used to the monsters
I work with them in clinic
visit after visit
the monsters weeping on my lap
while the person refuses refuses refuses
and sometimes a crack opens
like a portal light blinding
and the monster
is loved

that’s why I am here
what makes it worth staying
Beloved

now I think
I am new again
it’s hard to date
when the monsters are yanking at my skirt
crying howling distracting
and I am hopeful
but it is not my role
it’s not ok
it’s antisocial
to ask about the monsters

I am new again
I won’t date anyone with monsters
that I can see

they must love them first