Category Archives: Beloved

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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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Winter travel

My daughter and I travel again this winter. We know it’s a crapshoot with the combination of Covid-19, influenza, RSV and weather. She flew from Denver to Seattle. I tested positive for Covid-19 two days before she arrived. Change of plans! A friend of hers picked her up and she stayed with them until I had finished the first five days of isolation. Then she came to my house and we both masked. I ate upstairs and she ate in the daylight basement.

We flew from Seattle a few days before Christmas. We were lucky enough to fly, since the plane the day before was cancelled and on the day after. We had a direct flight Seattle to Dulles. We had a lovely Christmas with my son and daughter-in-law.

We also got to visit with 4 over 80 year old family members once I tested negative for 48 hours. My two aunts and an uncle on my father’s side and a grandmother on their father’s side. I am so happy to have seen all of these elders! Not olders, they are not old until at least 90 and that may move back too!

For the Ragtag Daily Prompt: travel.

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This too two

This too two I want to remember.
Disagreeing. Respectful nearly always.
You say, “You argue with everything.”
“I think about both sides.” I say.
“And if I am alone I discuss both with myself.”
You roll your eyes and I grin and continue.
This too two I want to remember.

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Small cat

The kittens were new in 2021 and are so much bigger now. Elwha is the biggest cat I’ve ever had. Tiger face and shoulders. They were a bit malnourished when I got them and Elwha grow out rather than up at first. He was also very worried about food and ate very fast. It took a while for him to trust that more food would come. So far so good and he is much more mellow now.

And they both love to go outside on harness and leash. I have to take them one at a time, because I can’t effectively carry both if one of them freaks out. Elwha is much more likely to freak out than Sol Duc. The recycling truck is particularly scary. Also people, dogs and SUVs.

Early on, when everything was new, Elwha jumped into the bathtub and howled, because he landed in water. He had previously found it empty. I had to rescue him and he was very upset. He spent a full thirty minutes cleaning himself.

Very happy New Year’s Eve. Be careful out there and I hope the New Year brings joys. I am hoping that this will be our last really bad Covid-19 winter, though we may need to do yearly vaccines.

Here is a tea-cat, Hot Kitty, in a teapot that Helen Burling Ottaway made. She was my mother and the poem on the teapot is mine. You can read it here. We drank a lot of tea growing up.

For the Ragtag Daily Prompt: new.

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This too

This too I want to remember.
Discussions of the world together.
The mysteries of science and sweatpants strings.
String theory and medicine, cabbages and kings.
Why the sea is boiling hot and whether pigs have wings.
This too I want to remember.