Walk with rabbits

Some days I can’t chuckle
when the news rolls in
my heart could buckle
shootings again

US gun habits
What’s up doc? Dagnabbit.

Shootings on the year of the rabbit
dancers dead as they celebrate
Why are guns such a habit?
I refuse to fill my heart with hate

Gun sales stab it
Year of the rabbit

Forgive but do not reconcile
let my resolve not buckle
mental health takes a while
let no demented chuckle

Fearful gun habits
online snared like rabbits

They argue they must defend their homes
daughter teacher on the line
fearful males online alone
think that guns will make them fine

Fear is a habit
Stop being rabbits

Leave your basement
Help another
Walk the pavement
Earth as mother

Make it a habit
To walk out with rabbits

_______________________

For the Ragtag Daily Prompt: chuckle.

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.

______________________________

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.

In the box

Wednesday was interesting and frustrating and part was beautiful.

The beautiful part was arriving at the Kingston, Washington ferry dock early. I took photographs of the quite gorgeous light display while I waited for the 6:25 ferry.

On the other side, I drove to Swedish Hospital, Cherry Hill. There I had another set of pulmonary function tests. The technician was very good. She said that since I have a normal forced vital capacity it does not look like asthma. However, a ratio was at 64% of normal, which is related to small airways.

“Have you had allergy testing?” she asks, “And a methacholine challenge?”

“Yes,” I say. “Both. In 2014. No allergies at all and the methacholine was negative.”

“Hmmmm.” she says.

Afterwards we call pulmonary. I have an appointment on this next Wednesday but we call and ask if there is a cancellation and I can get seen today, since I am two hours from home already.

Yes, there is, but I have to hurry to Issaquah, Washington.

There is an accident on the I90 bridge, so I do not think I will make it. But I am there by ten and the pulmonologist will see me. I check in, fill out paperwork, wait, go in the room, a medical assistant asks questions.

The pulmonologist comes in. He is nice and is able to pull up the chest CT from 2012, two of them since the first one “couldn’t rule out cancer”. Since I am referred for hypoxia without a clear cause, he questions me about my heart. Echocardiogram, zio patch (2), bubble study, yeah, it has all been normal. I describe getting sick and tachycardic and hypoxic and coughing.

“Do you cough anything up?”

“No.”

“Do you cough now?”

“Yes, if I exercise or get tired.”

He is like many physician specialists that I have seen. He has a number of pulmonary diagnoses, or boxes. Emphysema, COPD, lung cancer, bronchiectasis, chronic bronchitis, the progressive muscular disorders. All of those are ruled out in the past. So he puts me in the asthma box.

“I thought asthma was ruled out with the methacholine.” I say.

“Well, you have SOMETHING going on in the lower airways, and it was present in the 2021 and the 2012 pulmonary function tests. Maybe an asthma medicine will help.”

I mention ME-CFS and my muscles not working right, but he only deals with lungs. He won’t say a word about those disorders.

Sigh. I do not get the improvement with albuterol that diagnoses asthma on the pfts and never have. The formal reading of the pfts is that I do not meet criteria for asthma but there is something in the lower airways.

Monsters, maybe? I’ll try the inhaler, though with skepticism. Antibodies seem like a better guess, but antibodies are outside this pulmonologist’s set of boxes.

________________________

The photograph is from Swedish, Cherry Hill, bird’s eye view from the balcony.

Methacholine test.

Yammer

You’ve joined my silent dead: doesn’t matter
whether you speak or not. You’d like this song
and be jealous of the skills. I yammer
to my dead, the number rising strong.
At sixty I declare that I am middle aged
Mom dies at sixty-one which feels unfair.
My sister dies at forty-nine, cancer rage.
I watched them both as chemo takes their hair.
You too are dead no words across the breach.
I yammer to you daily in my head.
Agates gleam, treasure on the beach.
You refuse to look, I mourn that you act dead.
You sit stubborn in a rocking chair alone.
You don’t believe your dead will call you home.

For the Ragtag Daily Prompt: yammer.

Conspiracy is easier than vulnerability and grief

“Our culture faces a flood of conspiracism” says the Atlantic Monthly.

My great Uncle forwards an article that says we are tracking along stages as we did to WWII.

I write back. No, I say, we are tracking towards WWI.

Because of Covid-19.

The problem with the pandemic is vulnerability and grief. It is difficult to be mature enough to accept vulnerability and grief. It is easier to find someone to blame and go after them. We can’t burn a virus, we can’t hang it in effigy, we can’t take it to court and give it the death penalty. Many people are terrified and do not want to feel vulnerable and do not want to grieve. So they fall into conspiracies: it is safer to believe that the pandemic is a lie, that alien lizards have taken over the US Government, that it is the fault of a country making it on purpose, or a race, or a religion. It is easier to believe that nanocomputers are being injected with the vaccine than to think about the number of dead. It is easier not to think about the number of dead, the terrifying randomness, to believe that this only affects people with preexisting conditions, or people who God wants to smite, or people the lizard aliens hate. Or that the whole thing is a lie.

We are mimicing the late 19 teens and early 1920s very well. A world pandemic. We have a war, that is not a world war. This time we have bombs capable of destroying current life on earth. We’d be left with tardigrades and those bacteria who live in the deep trenches in boiling water where the earth’s crust is thin. At least one of my friends thinks this might be a good thing.

We have just reached 8 billion people.

In London, the Black Death had a 50% kill rate in the 1400s. Half the people that got it died. It changed the world. Pandemics change the world. In this pandemic the death rate is about 1% or a little more. However, 10% to 30% of the people with Covid-19 have Long Covid. Today, Johns Hopkins says we are at 635 million people who have gotten Covid-19. 6.6 million or more are dead from it. Then we have between 65 million and 195 million people with Long Covid in the world.

We don’t know how long Long Covid lasts. We don’t know how to cure it. We do not know if we can cure it or if people will get better. We do not know, we do not know, we do not know.

Which is also terrifying. So the conspiracy and someone to hate or some group to hate or someone to fight is safer for many people.

Do not go there. We must grieve. We must help each other. We must face fear and not give in to it. We must not fall into the trap of the charismatic leader who will give us villains, who will lead us into a World War to distract us from our grief.

And from there into a world depression. Remember, the Roaring Twenties end with the worst depression the world has seen so far. Let us not repeat it, let us not beat it.

Peace you and blessings.

Getting ready

Rainshadow Chorale is practicing, masked, but practicing, for our concerts the first week of November.

I think it’s going to be fabulous!

Our website: http://rainshadowchorale.org/

Now all we need is the audience! Mark your calendars!

For the Ragtag Daily Prompt: audience.

how to protect codgers

A friend calls me yesterday, complaining that the new Covid-19 vaccine doesn’t prevent infection nearly enough for him to want to get it. He is in his 70s and says darn it, he’d still have a 60% chance of getting infected.

I thought about it and wrote back this morning:

Re the new vaccine the POINT is NOT to prevent infection, though it lessens it in codgers like me and you.

The point is that the vaccinated younger people shed a s–tload less virus if they get it, because their immune system kills it fast. This reduces the amount of circulating virus so that the codgers stop dying like flies. Also the codgers get less sick if their immune system recognizes B4 and B5.

Got it? Get the vaccine.

I am waiting for the top ten causes of death for 2021 to come out. Over one million US people have died of Covid-19. In 2020, there were between 300-400,000 deaths from Covid. That means that we lost 600-700,000 in 2021. If we lost close to 700,000 people, then Covid-19 would beat out heart disease as the number one cause of death in the US. When did that last happen? During the 1918-1920 influenza, the “Spanish” flu that has been traced to a chicken farm in the US midwest.

Here is a provisional and not final list: https://www.cdc.gov/nchs/data/health_policy/provisional-leading-causes-of-death-for-2021.pdf. Hmmm. The numbers are not adding up unless a lot of US people died of Covid-19 in early 2022. And cancer is higher than it’s ever been and creeping up on heart disease. But these are not the final numbers, sigh.

Here is a fascinating chart: https://www.cdc.gov/nchs/data/dvs/lead1900_98.pdf. If you scroll to the end, the top two causes of death in 1900 were pneumonia first and tuberculosis. Heart was fourth. Heart rises to first in 1910 but then pneumonia is back at the top in 1918-1920. I think that the heart has been number one ever since, in the US. World top ten is not the same.

This is not the first pandemic and it won’t be the last. It is horrible. I think that everyone is doing the best they can, though some responses seem saner than others. Remember the old doctor joke about what to do in a code (when someone’s heart has stopped). First: check your own pulse. It’s a corollary that if the patient is dead, you can try to bring them back, but you can’t make them more dead. Also, my latest Advanced Cardiac Life Support class, on line, told me that sometimes I do not have to do cardiac life support. Their example was a decapitated patient. Really? Ouch, doctor humor. But truly, if you are freaking out or want to scream at someone or feel like the world is nuts and you have to do something, first check your own pulse. Slow it down. Breath in four and out four. I can drop my pulse from 101 to 71 in 20 seconds, just by slowing my breathing. You can learn to too.

My recommendation is that if you are due for the booster, get it. And thank you for protecting me and my friend and the other codgers.

No, it is not snowing here yet. But codger seems to be a word for an old GUY. Humph. Would a grumpy hummingbird be a grummer? What is a female codger? I am using codger for any gender, to heck with it.