After Lou Carreras commented on my write up on autoimmune disease, I thought I would do more research. The article above https://theworlddata.com/autoimmune-diseases-statistics-in-us/ shows an enormous increase in autoimmune disorders in the last twenty years. Also, I canβt tell if they include fibromyalgia, chronic fatigue, long covid and the encephalopathies. The first three can be ANA and ESR negative. To me that means that we have not found a good inflammatory marker for these disorders. It is certainly not that they do not exist.
The data is a bit overwhelming and horrifying. I know too many people with connective tissue disorders and those were very very rare when I was in medical school (1989-1993). Not nearly as rare now and all the people I know are young.
I stand by what I wrote and this reinforces it: as a culture and world we have to back off from the high sympathetic nervous system fight or flight.
And today, Formula One racers are driving around the mall and Washington, DC. So what do I think of that? Imbecilic, toxic, dangerous. Which egotist set that up?
Once again here I go out on a limb. Here is my prediction for the next Really Big Thing in medicine, which is already happening. It is slowly rising from the murky swampy depths of our unconscious.
Autoimmune encephalitis? Or encephalopathy? What a mouthful. And what the hell?
Well, we have always said that we do not know the causes of depression, mania, schizophrenia, psychosis and all the other psychiatric diagnoses.
And now I think we know, though we don’t have them all sorted yet.
The cause is the immune system. And what’s more, it’s adaptive.
“NO!” (you run screaming from the room). “Not MY immune system! NO!”
Yes, I say, your immune system, my immune system, everybody’s immune system.
WHY? Well, my version shuts me down. I get tachycardia (a fast heart rate), short of breath, accusations that I am manic, my fast twitch muscles don’t work and I get pneumonia. And it lasts longer each time. Two months. Two months. Six months. A year and a half on oxygen and then off but really it took four years before my muscles started working right again. It shuts down my fast twitch muscles but not my slow twitch muscles.
So how is shutting me down adaptive?
Think. If there is a pandemic, or huge danger, or someone is trying to harm me, it isolates me. People think I am very very weird when it is happening. So I isolate, to protect myself. Isolate and voila — protection from pandemic. If I have resources, and luckily I do have resources, I can hole up. Food, drink and a broadband connection.
The book Brain on Fire and movie are about an encephalopathy: antibodies to NMDR that made the author psychotic until it was recognized and treated. I went to a virtual continuing medical education on encephalopathy in 2022, I think. In the US alone, there were already 555 patients identified with NMDR antibodies.
Now there is a whole list of antibody encephalopathies, many associated with cancers. Not all.
A physician friend calls me a few years ago. “Have you heard of NMDR antibody disorder?”
“Yes,” I say
“I have a patient with it,” she says. We are a county of 32,000 people. Rural. She is looking it up. I tell her what I know.
In January I see a patient who turns out to have Anti-Caspr2. I have to look it up. Now I see the list of encephalopathies that is rapidly becoming longer and longer.
I think that chronic fatigue, fibromyalgia and long Covid fall into immune system disorders too. Just because we haven’t figured out the mechanism: well, we may. If we don’t destroy the planet first.
I also have reservations about treatment. We are using more and more immune suppressants. I read about one that stops B cells from working. Specifically, the B cells that produce antibodies. Well, that would work for my disorder, except, I already get pneumonia really easily. And destroying the B cells lowers immunity and increases the risk of infection.
I see a patient in clinic who has a skin infection and a fever and an autoimmune disease. They are on an immunosurpressant that I don’t know much about. “Have you called your rheumatologist?”
“No, why?”
“I think you are supposed to stop the immunosupressant. Please call them today. And let me know what they say. Please!” I start antibiotics.
The patient sends a MyChart message. Yes, stop the immunosupressant while on antibiotics. In the future they will call the rheumatology office as well as seeing the clinic for any infection.
I am not saying we shouldn’t use immunosupressants. Sometimes we have to. Rheumatoid arthritis. Hypothyroidism, the most common autoimmune disease, yes, we should and do give outside thyroid hormone. But there is something else we need to do.
The clues for this lie with chronic fatigue and fibromyalgia. What triggers them? One in ten severe infections, severe stress, or a combination.
So we need to learn as a culture, as a world, as humanity, to lower stress. We can’t be high sympathetic nervous system fight or flight high achieving high spending higher faster crazier all the time.
Here is to the parasympathetic state. That is where we need to go. Go down, slow down, be kind to each other and ourselves, be gentle, laugh, fail, lie in a hammock, watch silly cat videos and fat bear week. Then the immune system might calm down and not attack us to save us. I think the immune system is pretty smart, really. Even as it pisses me off and limits me.
When you think about it, all the children in the world are adding at least one Adverse Childhood Experience score and possibly more, because of Covid-19. Some will add more than one: domestic violence is up with stress, addiction is up, behavioral health problems are up, some parents get sick and die, and then some children are starving.
From the CDC Ace website:
“Overview:Adverse Childhood Experiences (ACEs) are potentially traumatic events that occur in childhood. ACEs can include violence, abuse, and growing up in a family with mental health or substance use problems. Toxic stress from ACEs can change brain development and affect how the body responds to stress. ACEs are linked to chronic health problems, mental illness, and substance misuse in adulthood. However, ACEs can be prevented.”
Well, can they be prevented? Could Covid-19 be prevented? I question that one.
I have a slightly different viewpoint. I have an ACE Score of 5 and am not dead and don’t have heart disease. I spent quite a bit of time thinking about ACE scores and that it’s framed as kids’ brains are damaged.
I would argue that this is survival wiring. When I have a patient where I suspect a high ACE score, I bring it up, show them the CDC web site and say that I think of it as “crisis wiring” not “damaged”. I say, “You survived your childhood. Good job! The low ACE score people do not understand us and I may be able to help you let go of some of the automatic survival reactions and fit in with the people who had a nice childhood more easily.”
It doesn’t seem useful to me to say “We have to prevent ACE scores.” Um. Tsunamis, hurricanes, Covid-19, wars… it seems to me that the ACE score wiring is adaptive. If your country is at war and you are a kid and your family sets out to sea to escape, well, you need to survive. If that means you are guarded, untrusting, suspicious and wary of everyone, yeah, ok. You need to survive. One of my high ACE Score veterans said that the military loved him because he could go from zero to 60 in one minute. Yeah, me too. I’ve worked on my temper since I was a child. Now it appears that my initial ACE insult was my mother having tuberculosis, so in the womb. Attacked by antibodies, while the tuberculosis bacillus cannot cross the placenta, luckily for me. And luckily for me she coughed blood at 8 months pregnant and then thought she had lung cancer and was going to die at age 22. Hmmm, think of what those hormones did to my wiring.
So if we can’t prevent all ACE Scores, what do we do? We change the focus. We need to understand crisis wiring, support it and help people to let go of the hair trigger that got them through whatever horrid things they grew up with. 16% of Americans have a score of 4 or more BEFORE Covid-19. We now have a 20 or 25 year cohort that will have higher scores. Let’s not label them doomed or damaged. Let’s talk about it and help people to understand.
I read a definition of misery memoirs today. I don’t scorn them. I don’t like the fake ones. I don’t read them, though I did read Angela’s Ashes. What I thought was amazing about Angela’s Ashes is that for me he captures the child attitude of accepting what is happening: when his sibling is dying and they see a dog get killed and he associates the two. And when he writes about moving and how their father would not carry anything, because it was shameful for a man to do that. He takes it all for granted when he is little because that is what he knows. One book that I know of that makes a really difficult childhood quite amazing is Precious Bane, by Mary Webb. Here is a visible disability that marks her negatively and yet she thrives.
A friend met at a conference is working with traumatic brain injury folks. They were starting a study to measure ACE scores and watch them heal, because they were noticing the high ACE score people seem to recover faster. I can see that: I would just say, another miserable thing and how am I going to work through it. Meanwhile a friend tells me on the phone that it’s “not fair” that her son’s senior year of college is spoiled by Covid-19. I think to myself, uh, yes but he’s not in a war zone nor starving nor hit by a tsunami and everyone is affected by this and he’s been vaccinated. I think he is very lucky. What percentage of the world has gotten vaccinated? He isn’t on a ventilator. Right now, that falls under doing well and also lucky in my book. And maybe that is what the high ACE score people have to teach the low ACE score people: really, things could be a lot worse. No, I don’t trust easily and I am no longer feeling sorry about it. I have had a successful career in spite of my ACE score, I ran a clinic in the way that felt ethical to me, I have friends who stick with me even through PANDAS and my children are doing well. And I am not addicted to anything except I’d get a caffeine headache for a day if I had none.
For the people with the good childhood, the traumatic brain injury could be their first terrible experience. They go through the stages of grief. The high ACE score people do too, but we’ve done it before, we are familiar with it, it’s old territory, yeah ok jungle again, get the machete out and move on. As the world gets through Covid-19, with me still thinking that this winter looks pretty dark, maybe we can all learn about ACE scores and support each other and try to be kind, even to the scary looking veteran.
I never see you again you never speak to me again you never love your bearish parts you never let yourself get angry you never let yourself get sad you never let yourself feel you tell yourself you are happy you tell yourself everything is the way it should be
Top ten causes of death US 2020, according to JAMA, here.
Total deaths: 3,358.814 Contrast total deaths in 2019, at 2,854,838. That number had been on a very slow rise since 2015 (2,712,630) to 2019 (2,854,838). That increase over four years is 142,208 people. Then the death rate suddenly jumps 503,976 people in one year. Ouch. I cannot say that I understand vaccine refusal.
1. Coronary artery disease: 690,882 Heart disease still wins. And it went up 4.8%. It is suspected that people were afraid to go to doctors and hospitals. I saw one man early on in the pandemic for “constipation”. He had acute appendicitis. I sent him to the ER and his appendix was removed that day. He thanked me for seeing him in person. Might have missed that one over zoom.
2. Cancer deaths: 598,932 This is cancer deaths, not all of the cancers.
3. Covid-19: 345,342 I have had various people complain that covid-19 is listed as the cause of death when the person has a lot of other problems: heart disease, cancer, heart failure. The death certificate allows for more than one cause but we are supposed to list the final straw first. I cannot list old age, for example. I have to list: renal failure (kidneys stopped working) due to anorexia (stopped eating) due to dementia. That patient was 104 and had had dementia for years. But dementia is not listed as the final cause. So if the person is 92, in a nursing home for dementia and congestive heart failure, gets covid-19 and dies, covid-19 is listed first, and then the others.
4. Unintentional injuries: 192,176 Accidents went up, not down, which is interesting since lots of people were not in their cars. However, remember that the top of the list for unintentional injuries is overdose death, more by legal than illicit drugs. If there is no note, it’s considered unintentional. Well, unless there is a really high blood level of opioids and benzos and alcohol. Then it becomes intentional. They do not always check, especially if the person is elderly. The number rose 11.1%, which seems like a lot of people.
5. Stroke: 159,050 This rose too.
6. Chronic lower respiratory diseases: 151,637 This went down a little. This is mostly COPD and emphysema. So why would it go down? Well, I think bad lung disease people were dying of covid-19, right?
7. Alzheimer’s: 133,182 This seems to belie me putting renal failure due to anorexia due to Alzheimer’s. I think they actually read the forms and would put that as Alzheimer’s rather than renal failure, because it is not chronic renal disease.
8. Diabetes: 101,106 This rose too. 15.4%, again, probably partly because people avoided going to clinic visits. Also perhaps some stress eating. Carbohydrate comfort.
9. Influenza and pneumonia: 53,495 So this went up too in spite of a lot less influenza. Other pneumonias, presumably.
10. Kidney disease: 52,260 This went up.
And what fell out of the top ten, to be replaced by covid-19?
11. Suicide: 44,834 This actually went down a little. What will it do in 2021?
So what will 2021 look like? I don’t know. It depends what the variants of covid-19 do, depends on what sort of influenza year we have, depends on whether we are open or closed, depends if we bloody well help the rest of the world get vaccinated so that there is not a huge continuing wave of variants.
Today the Johns Hopkins covid-19 map says that deaths in the US stand at 608,818 from covid-19. If we subtract the 2020 covid-19 deaths, we stand at 263,495 deaths from covid-19 so far this year. Will we have more deaths in the US from covid-19 than in 2020? It is looking like yes, unless more people get immunized fast.
Qia is in her first year of college, 1200 miles from home. She joins the ski team, hoping to ski. There really aren’t mountains in Wisconsin. They are hills. She doesn’t have a car so she has to get rides to the ski hill. She does get demo skis, because she is on the team. It’s mostly guys, a few women. The guys chug a beer at the top of each run. The runs are ice after the first time down. It is very poorly lit and very cold. Qia is afraid of the ice and the guys and the drinking.
At Christmas she goes home, to Virginia. She really wants ski pants, she tells her mother. She is cold. She is still skiing in spite of the drinking and the scary guys and the ice. They yell at her to go faster but she goes the speed where she will not die. It doesn’t matter anyhow. She goes to a formal race and they have three foot tall trophies for the boys and nothing, not even a ribbon, for the women.
At home, her father is laughing. He is giggling, silly. He doesn’t make any sense. He gives Qia the creeps. Her mother sails along like nothing is wrong. Qia’s little sister has gone from the extroverted life of the party to locked down so hard that her eyes are stones. Fungk, thinks Qia.
Her father loses his down jacket, leaving it somewhere. Then he borrows her mothers and loses it too. Qia’s sister has out grown hers. On Christmas morning there are two down jackets and a pair of ski pants.
The ski pants are two sizes too small. Her father laughs. The down jackets are the ugliest colors, cheaply made, junk. Qia watches her mother and sister try to smile.
Qia leaves the ski pants and returns to Wisconsin. She gets a spider bite. It spreads. She goes to the doctor. He gives a laugh of relief and says it is shingles. He has to explain what shingles is. “It either means you are very run down or have severe stress.” Qia laughs. Worst Christmas of her life so far.
She realizes the problem. Her father has been abducted by fairies and a changeling put in his place. She reads everything she can find about changelings. Adult changelings are rare but not unknown. She pulls out every stop on top of her heavy schedule to learn about how to fight fairies. She can’t afford to hire a fighter. She finds an iron sword at a second hand shop. She hangs around the gyms and watches the fairy fighters fight. She goes home and practices every move. She collects herbs.
She sets things up before spring break. She arrives home and asks her mother and sister to go with her to a specialist in changelings and fighting fairies. Qia is sad but confident. Her mother and sister both cry after watching the movie about the behavior of changelings. Qia asks her mother and sister to help her.
They both refuse.
Qia can’t understand it. But she has studied and read the books. She will do it alone.
She meets with her father. She tells him how awful and frightening Christmas was. She tells him how ashamed and scared she was. She reads him a letter that her sister wrote to her, emotionless, about having to watch him when he is curled in a fetal ball at the top of the stairs. Her mother asked her sister to watch him, so he wouldn’t hurt himself. Her sister says that she wanted to go out with her friends. Her sister is in tenth grade.
Her father doesn’t say a word.
Qia begs him to tell her the key. The word that will open the portal. She shows him the sword and lists all of her herbs and describes her training. She tells him that after she defeats the fairies he will go home and her real father will be returned. She says that she knows he isn’t happy here, with mortals.
He doesn’t say a word to her for the rest of spring break. Her mother and sister do not say a word about it either. Her father drinks more heavily. Qia returns to college.
Qia refuses to come home for the summer. She stays in Wisconsin. She does not want to be around any of them.
Her sister is three years younger. Qia wishes that she could scoop her up and take her to Wisconsin. Qia frets and is in pain. Qia’s second year starts and her sister is in eleventh grade.
Qia’s mother calls. Qia’s sister is on her way. 3000 miles away. “At the last minute, C invited her to live with them in Seattle.” says Qia’s mother. “C was leaving the next day. Your sister decided and went with her. It’s a relief because your sister was getting A’s on tests but refusing to turn in homework, so overall she was getting D’s. ” Qia is relieved. C and S have a son named after her father. He is younger than her sister. Qia also has a cousin 6 years older who lived with C and S and still lives in Seattle. Qia wishes her little sister the best.
Years later, after her mother has died, Qia asks her father about it. By now her father is back and the changeling is gone. I was angry, says her father. But your sister was getting into lots of trouble. Really bad trouble. What could I do, locked in fairyland. He does not go into what Qia’s sister was doing.
And after her father dies, Qia finds a letter. The letter is from C to her mother. It is talking about her sister going to live with C and S. My mother lied to me, thinks Qia. I am not surprised. I wonder why she lied to me. Qia thinks it is probably because her mother set it up with C and did not tell her sister. Qia thinks that her mother lied to her sister. Qia thinks how much that would have hurt her sister: that her mother chose the changeling over her. Her sister would have been terribly hurt and angry.
But so many are dead, what does it matter? Qia’s mother is dead. Her father is dead. Her sister is dead. C’s son is longest dead. S is dead. Even the changeling is dead. Friends in fairyland let Qia know. Actually, Qia and C are the only ones left living.
C did not lie to Qia or her sister directly. She let Qia’s mother do the lying.
This is not a story about fairies. It is about alcohol or any addiction. We must support families, because the whole family becomes ill. Triangulation, lies, competition, enabling. In my maternal family, the enablers die before the enablees. I have chosen to leave the system and I refuse to be either an enabler or enablee. If you are in that sort of system, you may find that the family resists you leaving and tries to draw you back in to it. When you do finally succeed in leaving, there will be a strong reaction. When the pirahnas run out of food, they eat each other. Stand back and don’t get drawn back in. The newest victim will need to make their own decision to stay or leave.
I am spring cleaning in spurts and rearranging things. Amazing what you find. I found a mix tape someone made for my ex when he turned 50. It cracks me up.
I cleaned the top of the fridge. The dust bunnies were taken by surprise and dust elephants too. “Help,” shouted the dust bunnies. “Help,” shouted the dust elephants. Hopefully they have gone to a better place. At any rate, they aren’t on the fridge any more.
It’s raining out, today and yesterday. Time to clean and rearrange and put things in the get rid of it pile. Time and time.
My daughter is an introverted thinker. Sometimes this is extremely entertaining.
When she was in first grade she came home part way through the year and said, “I want to get my hair cut like a boy.” “Short?” I said. “Yes,” she said. I didn’t think about it too much but made an appointment. I thought it was because she has that fine tangly hair that is really difficult to comb.
On the way to the salon, my intuition kicked in and I realized that something was up. She was in that deep abstraction mode, thinking. I said, “Why do you want to get your hair cut like a boy?” Her reply, “The boys chase the girls on the playground.” Hmmmm. “Do they chase you?” “No.” “Why not?” “They are not sure if I am a boy or a girl.” “You don’t want them to be sure?” “No.” “Why not?” “There is another class that gets to recess before us. They get the tire swing. They have a club that is all boys. They won’t let us use the tire swing.” “You are going to fool them. Okay.” I sat back to see how she would proceed with whatever plan she had regarding the tire swing.
She had her hair cut very short. The next morning she chose hand-me-downs from her brother. A rugby shirt, a navy blue sweatshirt, flannel lined thick jeans and his old hiking boots. She had never worn any of them before and her usual preference was pink. I took her to school. She went into her class and just went to stand by some other children, not saying anything at all. They commented on her haircut.
I went to the principal and described my daughter’s plan, mostly because I thought it was quite brilliant. He said, “Oh, we have to do something about this.” I said, “I wasn’t trying to get anyone to interfere.” He said, “No, but we have a playground policy. They are allowed to have clubs, but they are not allowed to exclude anyone. In other words, no ‘boys only’ clubs. We will hold an assembly to remind them.”
So for a seven year old introverted thinker on the playground, a problem required careful thought and a plan, which she then carried out. I liked the approach of challenging gender. As far as I could tell it did not occur to her to ask for help. I do wonder at times what other plans she is implementing.
She did get to use the tire swing. Then she went back to wearing pink.
Discover and re-discover Mexicoβs cuisine, culture and history through the recipes, backyard stories and other interesting findings of an expatriate in Canada
Engaging in some lyrical athletics whilst painting pictures with words and pounding the pavement. I run; blog; write poetry; chase after my kids & drink coffee.
Refugees welcome - FlΓΌchtlinge willkommen I am teaching German to refugees. Ich unterrichte geflΓΌchtete Menschen in der deutschen Sprache. I am writing this blog in English and German because my friends speak English and German. Ich schreibe auf Deutsch und Englisch, weil meine Freunde Deutsch und Englisch sprechen.
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