On a bus

I am in a bus. The driver is a man and quiet. It is night and I can’t see much besides road. I am standing by him.

“You have strong emotions.” he says.

“I am so glad that I can be myself with you and not hide them.” I lean my cheek against the back of his right shoulder. He doesn’t answer but what I feel is acceptance.

I wake up. It was a bus but I don’t know what or who else was on it. I don’t know where it is going. I am worried that I did not have a seatbelt on and I am just standing in the front of the bus. Unrestrained. Unrestrained emotion?

Once a woman says to me, “Your emotions are too strong.”

I think, “My emotions are too strong for YOU. They are normal for ME.” I avoided any discussion of emotion with that person for two years.

The people in dreams are aspects of ourselves. The quiet man is an aspect of myself and he is driving the bus. Emotion riots around but is not driving. Life is rather like that bus. We don’t always know where we are going or what is next.

I have had a very medical January, working to help three other people. I talk to another friend yesterday. She says, “You are being called back to medicine.”

I frown at the ceiling since I am on the cell phone. “I guess so. I am thinking about how I want to do it. I don’t know yet.”

She is off on a trip for three weeks. “You’ll figure it out.”

And where will the bus take me next?

I wish I had an ambulance that unfolds into a clinic.

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I had rather a grand time pulling out action figures and dolls from the basement to set up scenarios with the Barbie Ambulance. Here the baby has a facial rash. Probably 5th disease, parvovirus. This baby’s rash resolves when you wash her face with cold water. I am pleased that Barbie Doctor has a mask.

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.

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.

Winter bless us

Winter bless us year end dark and freezing
winter turn us inwards prayer for joy
prayer for joy for young ones all are seizing
others mourn loved deaths, eschewing toys
darkness let us settle loving all
silence let us turn our thoughts to peace
walk in wind and birds, iced trees so tall
few are out to gently walk the streets
the frozen ground holds lives that lie in wait
in freezing seeds hear the call and know
let every human drop their arms and hate
while seeds lie in wait to grow
let winter’s silence fill our hearts with joy
let peace descend, war melt to children’s toys

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A poem for Christine Goodenough after reading her Winter Delights.

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.

Yesterday

A triple play: a loss, a gain, a change.

Yesterday

Yesterday our friendship died for good
A small death that won’t be noticed
I want to place a small cross on the day
to mark this death and life
life because my small child is gone
she grew up, now part of the quiet woman
who came to me in a dream
when you left
you move on and tell me you won’t change
so you will find another to draw close
and push away, terror
that you will be trapped
you already are, in your own mind
you say you want freedom
in refusing change, that is death
slow and alone, is lonely different from alone?
call it freedom as you wish

I want to grow, I want to learn always
you want your past, your dead
you tell me I am keeping you from your life
you have it back I say as music restarts
I don’t, you say, my brother is dead, my wife
I did not cause those
they happened before we began to walk
and yet you blame me
like an angry child

I am in the gardens wandering
I am in the gardens wondering
the gardens of the world
everything is a garden
though some are planted with skulls
and young people fighting
It is strange to feel whole
I do not know what to do with it yet
but I will

_______________

I have fallen for this band. I am really enjoying them.

For the Ragtag Daily Prompt: triple.

Integrated behavioral health

The buzzwords now in Family Medicine. Integrated behavioral health in primary care. I am finding it a bit annoying.

Integrated does not mean race in this context. It just means the clinic should have a behavioral health person.

I suppose that is a good idea maybe, or might seem like one. But what do they think I have been doing for thirty years? Ignoring behavioral health?

Really, primary care is half or more behavioral health, if a primary care doctor gives people time and pays attention. People have an average of 8 colds a year. Why do they come in for cold number 4 if it is no worse than all the others? Because the cold in not really why they are coming in. The cold is the excuse. Notice that the person is there, that they are not that sick, that they do not care that you are not going to prescribe antibiotics.

I have my hand reaching for the door when an older patient says, “May I ask you something?” She came in for something that she didn’t seem to care about, so I am not surprised. I turn back. “Yes.”

“I have friends, in another state. They had a baby. The baby is very disabled.”

I sit down. This is more than 15 years ago, so I do not remember what the baby had. Hydrocephalus. Cerebral palsy. Something that requires multiple doctors and physical therapy and the parents are grieving.

“What bothers me most is that they have to struggle so much for services. There is very little support and very little money set aside. One of the parents has quit their job. It is a full time job taking care of this child and they are frightened about the future. Is this really what it’s like?”

And that is the real reason for the visit. “Yes,” I say. “It can be very difficult to access services, you have to track down the best people in your area, some physicians won’t pay much attention and others are wonderful. And the same with physical therapists and everyone else. Tell them to find some of the other parents of these children. Get them to recommend people. And the parents have to be sure to take care of themselves and each other.”

She frowns. “It’s a nightmare. Their life completely changed from what they thought. First baby. And it is overwhelming.”

“I am sorry. You are welcome to come back and ask me questions or just talk.”

“Thank you. I might.”

“Do you need a counselor?”

“No, I’m fine. I am just worried about them and feel helpless.”

“It sounds like staying in touch is the best thing you can do.”

“Ok.”

The true reason for the visit is often something entirely different from what the schedule says. Sometimes people are there without even knowing why they came in. “Can I ask a question?” That is key. Saying to see people for one thing is criminal and terrible medicine and makes behavioral health worse. There is so much we can do in primary care just by listening for these questions and making time for them.

I have nothing against adding a behavioral health person to the clinic. They talked about “embedding” a behavioral health person in each group of soldiers back in 2010, when I worked at Madigan Army Hospital for three months. I always pictured digging a hole in my clinic floor, capturing a counselor, and then cementing them in the hole. I would have to feed them, though. I always thought that was sort of a barrier. One more mouth to feed. I found it more useful to contact counselors, ask what they wanted to work with, learn who knew addiction medicine, learn who was good with children or families or trauma. And ask patients to tell me who they liked and why. I integrated behavioral health in my community, not just in my clinic, because there is no one counselor who is right for everyone.