Negotiating peace

I spend a long day wrestling with love
arguing with myself back and forth
I am no angel descended from above
Those undeserving of my love make me wroth
yet my core argues that it still loves them
and agrees their cruelty’s beyond the pale
I snarl and cough and choke on bitter phlegm
Defend my self staying far away and hale
My core agrees I shall not tolerate abuse
Forgive yet we despair we’ll ever reconcile
They show no guilt nor shame for their misuse
My core says let them be: she is so mild
Negotiation done: Agreed. I may love those who I love
But I leave contact with them to the angels and Beloved.

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Sonnet 10

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.

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.

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.

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.