Category Archives: angels

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Tubulin and antibodies

This is very science dense because I wrote it for a group of physicians. I keep thinking that physicians are scientists and full of insatiable curiosity but my own experience with to date 25 specialists since 2012 would say that many are not curious at all. This continues to surprise and sadden me.

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All science starts with theories. Mothers of children with PANS/PANDAS reactions had to fight to get the medical community to believe that their children had changed after an infection and that symptoms of Obsessive Compulsive disorder and all the other symptoms were new and unexpected and severe. This is a discussion of tubulin and how antibodies work, theorizing based on my own adult experience of PANS. I was diagnosed by a psychiatrist in 2012. No specialist since has agreed yet no specialist has come up with an “overaching diagnosis” to explain recurrent pneumonia with multiple other confusing symptoms.

The current guidelines for treating PANS/PANDAS are here: https://www.liebertpub.com/doi/full/10.1089/cap.2016.0148. This section discusses four antibodies that are a common thread in PANS/PANDAS patients. Antibodies to dopamine 1 receptors, dopamine 2 receptors, tubulin and lysoganglioside.

Per wikipedia “Tubulin in molecular biology can refer either to the tubulin protein superfamily of globular proteins, or one of the member proteins of that superfamily.” Tubulin is essential in cell division and also makes up the proteins that allow movement of cilia, flagella and muscles in the human body. There are six members of the tubulin superfamily, so there are multiple kinds.

Antibodies are complicated. Each person makes different antibodies, and the antibodies can attach to a different part of a protein. For example, there is more than one vaccine for the Covid-19 virus, attaching to different parts of the virus and alerting the body to the presence of an infection. Viruses are too small to see yet have multiple surface sites that can be targets for a vaccine. When a cell or a virus is coated with antibodies, other immune cells get the signal to attack and kill cells. At times the body makes antibodies that attach to healthy cells, and this can cause autoimmune disease.

Antibodies also can act like a key. They can block a receptor or “turn it on”. Blockade is called an antagonist when a pharmaceutical blocks a receptor and “turning it on” is called an agonist. As an example of how an agonist and antagonist work, take the pharmaceutical buprenorphine. Buprenorphine is a dual agonist/antagonist drug. In low doses it works as an agonist at opioid receptors. At high doses it is an antagonist and blocks the receptors. It also has strong receptor affinity. This means that it will replace almost all other opioids at the receptor: oxycodone, hydrocodone, morphine, heroin. The blockage and ceiling dose make it an excellent choice for opioid overuse. Higher doses do not give a high nor cause overdose and when a person is on buprenorphine, other opioids do not displace the buprenorphine and give no effect.

Similarly, a tubulin antibody could be an agonist or an antagonist or both. As an agonist, it would block function. My version of PANS comes with a weird version of chronic fatigue. When I am affected, my fast twitch muscles do not work right and I instantly get short of breath and tachycardic. I suspect that my lung cilia are also affected, because that would explain the recurrent pneumonias. My slow twitch muscles are fine. With this fourth round of pneumonia I needed oxygen for over a year, but with oxygen my slow twitch muscles do fine. We have fast twitch fatiguable muscles, fast twitch non-fatiguable, and slow twitch. With six families of tubulin and multiple subfamilies and every person making different antibodies, it is no wonder that each person’s symptoms are highly variable.

Currently the testing for the four antibodies is experimental. It is not used for diagnosis. When I had pneumonia in 2012 and 2014, the antibodies had not yet been described. There is now a laboratory in New York State that will test for them but insurance will not cover the test, it costs $1000 as of last year, and it is not definitive nor useful yet anyhow.

There are studies going on of antibodies in ME-CFS, fibromyalgia, chronic lyme disease, PANS/PANDAS and Long Covid. Recently antibodies from humans with fibromyalgia were injected into mice. The antibodies caused fibromyalgia symptoms in the mice: https://www.sciencedaily.com/releases/2021/07/210701120703.htm. One of the barriers to diagnosis and treatment of fibromyalgia is that science has not found a marker in common that we can test for. Even the two inflammatory markers that we use (C-reactive protein and Erythrocyte Sedimentaion rate) are negative in fibromyalgia. This doesn’t mean that people do not have pain or that it is not real, it just means we have not found the markers. It may be that the markers are diverse antibodies and there is not a single marker.

The research is fascinating and gives me hope. It boggles the mind, doesn’t it?

For the Ragtag Daily Prompt boggle.

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Heart meditation for the Solstice

It snowed last night. Covid is making me fall asleep at 4 or 5 pm which means I am very awake at midnight. The cats and I checked out the snow at 1 am.

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Avalokitesvara Bodhisattva is the Bodhisattva of Compassion. He is enlightened, yet chooses to return to earth over and over, until everyone is enlightened.

In China, he changes gender and names into Kwan Yin, the Bodhisattva of Compassion.

In college I date a lapsed Jewish Zen Buddhist and I learn to meditate. At the group meetings there are 6 or 7 of us. The Heart Sutra is recited and we meditate facing the wall, sitting on our zafus, for 40 minutes. It is easier to meditate in a group, though I have no idea why. Pride? Some connection to other’s breathing? The breathing will serve me very very well later, when I keep getting pneumonia. The ability to slow my breathing will help me survive.

When we had a group meditation, the Heart Sutra was read slowly and clearly. It has it’s own rhythm. I had lost it and finally found the translation we used. Here it is:

There is more than one translation, here: https://dharmanet.org/HeartSutra.html. I have tapes and books by Jon Kabat Zinn, who has studied mindful meditation for 30 years. He gets better results in his mindful meditation pain classes than opioids, with an average decrease in pain of 50%. His tapes have the same slow gentle speech as our Heart Sutra readers. It is hypnotic and I can relax. Though my oppositional defiance kicks in when he says firmly that I am to fall more awake, not asleep. I listened to that CD every night for a year after my father died. When he would tell me to fall awake, I would smile and slide into sleep, a happy rebel. I was comforted that I did not have to do what he said.

Where is the Avalokitesvara, the Kwan Yin of the West? What examples in the largest religions are there? Someone who stays even after they have achieved enlightenment/heaven because they want everyone there. Not only that, but they believe everyone can be there. And they will not give up until everyone is there.

I was surprised when a Unitarian Minister stated that Unitarians do not believe in Hell, because a loving creator would not consign anyone to Hell. I didn’t really want to give Hell up, but I also agree that a loving creator would not consign anyone to hell. It’s a bit easier for me to think of people as continuing on a wheel of life until they achieve enlightenment than to think of some people going to Heaven, but after all, I don’t know the whole story. No one knows another person’s whole story. I wrote DMV to figure out the Hell/Heaven thing. And the lead character wants to go back, because her work is not done yet.

I am thankful for paxlovid at the moment. I am thankful that I found this translation of the Heart Sutra.

Happy Solstice.

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The first photograph is Elwha looking very meditative after going out in the snow. Here they both are in the snow:

For the Ragtag Daily Prompt: solstice.

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Catch and release

The chances of you changing are quite small.
I know from very early in our time.
Why God makes angels that will one day fall.
We could be sent to teach each other rhymes
or something else. I wonder at it daily.
My heart opens like a flower even so.
The candle just at dusk burns quite palely.
I wonder what excuse you’ll use to go.
It’s a comic denouement I see at last.
You denigrate my knowledge and my skill.
After exposure you refuse to wear a mask
or test. I rise in anger at ill will.
It’s comic that I’ve liked your busy mind.
Respect for mine is nil: you elk’s behind.

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low dudgeon

I think of how you treat me with low dudgeon.
Rarely and when fatigued I think of you.
You hide away, a hermit like curmudgeon
pusillanimous liar, unfaithful and untrue.
We share a childhood full of trauma
I work hard to heal from all the strife
but you choose to elevate the drama
and excise protestations from your life.
I ask Beloved what I am assigned to do.
You don’t believe in angels nor in me.
The mystery of angels leads me here to you;
like a bear you hide up in the trees.
I find the change the loved Beloved grants.
You refusing change, I ban you from my pants.

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For the Ragtag Daily Prompt: dudgeon.

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Qia and the dark

This story is part of a series about a Balint group for angels. Balint groups are groups for physicians to get together and talk about cases that bother them. This often means facing their own biases and discriminatory feelings. I wrote this in January 2022. The current estimate of Long Covid is 10 to 30% of non hospitalized people. Which is huge and terrifying.

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“And really, it looks like at least half the population will get Omicron. The question,” says Qia, “is how much Long Haul it causes. If it causes 30-50%, like Delta, we are in serious trouble.”

The angels are silent.

“Do you think it will?”

“I am hoping for under 10%.” says Qia. “But of course I do not know.”

Silence again.

“Why do you go to WORST CASE?” snaps Algernon. His wings rustle.

Qia blinks at him slowly.

She thinks about it. “It is the safest place to start.”

Algernon frowns at her. Another angel slowly nods.

“If I start in the worst case scenario, I can face it. I have to think about it, work through it, plan for it. Then I can back off and hope for one of the less horrific scenarios.”

“You are WEIRD.” says Algernon.

Qia is annoyed. Her wings go bat and blood red.

“Word.” whispers a very young angel.

“WHY?” snaps Qia, “WHY NOT face the worst?”

“Most people never do,” says the moderator.

“What?” says Qia.

“Most people never face the worst. They don’t want to. They are terrified. They are scared. They do things to avoid thinking about it. They skip that step and just go straight to hope.”

Qia glares at her. The moderator smiles and her wings go black as pitch.

“We aren’t PEOPLE. We are ANGELS.” says Qia, nearly snarling.

Algernon laughs. “Yeah, well, some of us do not want to think about the worst either. That is Gawd(esses) job.”

Qia is doubly pissed off to be crying. “No, we have to think too.”

“Qia, I agree, but it is hard.” says the moderator. “That is why you have the job you have. Because you are willing to go straight to the dark.”

Qia has her face in her hands.

The angels surround her, soothing, and start to sing.

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trauma bunnies

We can work it out, the song says. But no, maybe not, not always.

Trauma bunnies together. Walking. Why would you walk with me, I am so down? Oh, you are a trauma bunny too. Walking on the beach, slowing down, looking at rocks. The walks get longer and longer. You bring FOOD and tell me I have food insecurity. I laugh. But it is true.

Comparing notes about childhood. You say yours was worse. Yours was terrifying. You ran away over and over and over, but came home. Small children need food and shelter. You get older. A neighbor says if you run away now, you will never stop running. You do not run away permanently. But you still run.

My childhood has no bruises to the skin. But the bruises to the heart are a nightmare. You finally say that I win, my childhood was worse. But I was not trying to win, I want to say. I was just telling you as you’ve told me.

We have both survived damage and coped. I have the resource of a grandmother with money who paid for medical school. I apply without telling my parents, after my mother says, “You don’t want to be a doctor. It’s too much work.” I am a poet, a writer, being a doctor so I can study people and have children and be certain there is food. Job security. And food security, true. With a husband or without.

You fight school all the way, but when you are told that you will be a failure or in jail, you decide that you will prove them wrong. You are still proving it. You won’t tell how you make your money, not to the locals, but the new car every two years tells them you have money. And it’s the wrong kind of car: a liberal car for a professed conservative. It stands out.

We start playing trauma bunnies after six months. You want me to come to dinner and I turn New Yorker and direct: is this a date? You are surprised. I set the boundaries and you think about it. And say yes.

But trauma bunnies is not as much fun as the beach. We get close and intimate and then you run. When you run, I run too: the other way. I don’t chase you. You haven’t experienced that before. You keep coming back. Why aren’t I chasing you? Because I too am a trauma bunny, remember?

Back and forth: close and far, together and apart. All holidays become times when you run, so that I will not be part of the family. I announce that I am now your mistress and you can’t be with my family either. Back and forth. Closer and then you refuse to come to my son’s wedding. Far again.

You say the summer will be very busy. You say your focus is music. You say we can go to one beach. One beach? For the whole summer? I run to europe and you are surprised. I ask, are you too busy to have me around? No, you say. But when I return, you have a friend staying with you. Intimacy disappears.

I am tired of it. My daughter is here.

At last I bring up sex: are we done with that?

No, you say. We have visitors.

Wouldn’t stop me, I say.

You say, sex is still on the table. Then you hem and haw. You say sex is not important, you can take or leave it. The friendship is more important. Well, the friendship is most important, but sex IS important to me and hello, it’s damn insulting of you to say you can take or leave it. Leave. This is all triggered by your yearly family get together. You need me at a distance so you won’t be tempted to invite me. You don’t want me there so I am distanced again.

And I am done, done, done. I dream of a small child, a wild woman, a woman doctor and someone new: a quiet woman. I think about the quiet woman and I ask the other three. Yes, they say.

The quiet woman is the adult. Not the mask of the professional, not the wild defense fighter, not the small child. The small child has healed. She is the connection to the Beloved, to the source of the poems. She blesses the others. The quiet woman takes over.

The quiet woman takes over. She says goodbye, farewell, Beloved keep you and bless you, you may contact me any time.

You are in your cave alone and do not answer.

You may end up there, alone, alone, alone. You want freedom most of all, you say. Another song: freedom is another word.

Yes it is. People can change and grow. But some want to and some don’t and sometimes we don’t grow at the same time.

Yes, says the quiet woman. Sometimes we don’t grow at the same time.

Fade to quiet.

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I took the photograph from a canoe at Lake Matinenda in Ontario, Canada.

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quiet woman 2

mirror mirror

I am culpable as the mirror
hiding hiding hiding
curious about you
what is it you want to see?

I am always surprised
when a man lays his fantasy over me

I have hidden and studied people
for many years
now realize that that is why
the fantasy gets overlaid

I did not know
I was hiding behind a mirror

I think about four men
serial monogamy
over fifteen years
a year break after each

a mirror reflects
a man’s own anima: his ideal woman

all four so different
yet there is a thread that binds
trauma like my trauma
and closer and closer to an opposite

I do not want to be a mirror
any more

the connection of the damaged child
I tried so very hard not to trigger
until the mirror broke
I hold pieces up in my bleeding hands

they leave when the mirror breaks
now I understand

this time was hardest and least hard
at the same time
I could almost see what was happening
almost

and now I can see
and break the pattern with the mirror

my friend says
why don’t you let them see
who you really are?
they would never have let me work

I had to wear the doctor mask
even with other doctors

the nurses and the staff saw through it
right away
they’d call me for patient needs
and knew I’d answer

did I have to wear the doctor mask
or did I wear it to feel safe?

water over the dam
but it’s time to take down the dam
and be myself
and not a mirror

I didn’t know this quiet woman is me

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For the Ragtag Daily Prompt: ART!