Vaccination talk

My cousin asks me once, why do doctors say, “This will only hurt a little?’ when they give a shot.

I thought about it. “It’s a matter of scale. Picture this: in room one, I have a woman who thinks her lung cancer is back and it is. In room two I have a mother and daughter crying because the daughter is pregnant and frightened. In room three, I have a well adult who needs a vaccination. Scale their levels of pain.”

Room one is very high, room two is very high, room three barely registers on my pain scale.

I would give out a health department vaccination information booklet by 24 weeks to my pregnant patients, especially the first pregnancy. I previously had given it later, but then I had a woman who refused the child’s vaccines at visit after visit after visit, saying that they were still doing research. The child still had no vaccinations at 9 months.

Remember the woman who refused vaccinations for her children? She had more than four children. They all got whooping cough, pertussis. They whooped for months and were on quarantine. They were not allowed out of the household, any of them, until they were no longer infectious. The mother said she now was for vaccines and got them vaccinated.

I have seen adults with pertussis. Adults do not whoop but they cough. They can cough until they throw up or until they break a rib. For months. It is not fun at all. The adult Tdap stands for tetnus, diptheria, and acellular pertussis. I have never seen a case of diptheria and I don’t want to. It sounds horrible and can kill.

Have I seen a complication of a vaccination? One in 30 years of practice. And I know a person who had a complication, but they were not my patient.

The illnesses cause way more damage and disability than the vaccine. In residency I care for a young man in a group home. He can’t talk and has an odd skull shape. His mother got measles during the pregnancy. Measles is one of the infections that can cause severe birth defects. Get vaccinated before getting pregnant, though half the pregnancies in the US are “unintended”. That usually means “unbirthcontrolled”. I do not really understand that, since the risk of pregnancy in a fertile woman is one in four every time. Twenty five percent seems a pretty high risk to me.

I’ve written about my response to my last Covid-19 vaccination. It’s not a complication. It is an antibody response and it means that my immune system is WORKING, though admittedly it is weird and annoying. I don’t like the muscle dysfunction, but I will get the vaccinations anyhow.

I have a very alternative young woman in for prenatal care once. I give her the vaccination booklet. “Oh, my child is getting every vaccine there is,” she says.

“May I ask why? I was not expecting you to say that.”

“I was in the Peace Corps in Africa. I have seen kids die from every single one of the diseases we vaccinate for. My kid will get ALL the vaccinations.”

I said, “Please would you talk to my other moms?”

She smiled at that. “Maybe.”

I hope she did and does.

Qia and the dark

This story is part of a series about a Balint group for angels. Balint groups are groups for physicians to get together and talk about cases that bother them. This often means facing their own biases and discriminatory feelings. I wrote this in January 2022. The current estimate of Long Covid is 10 to 30% of non hospitalized people. Which is huge and terrifying.

___________________________

“And really, it looks like at least half the population will get Omicron. The question,” says Qia, “is how much Long Haul it causes. If it causes 30-50%, like Delta, we are in serious trouble.”

The angels are silent.

“Do you think it will?”

“I am hoping for under 10%.” says Qia. “But of course I do not know.”

Silence again.

“Why do you go to WORST CASE?” snaps Algernon. His wings rustle.

Qia blinks at him slowly.

She thinks about it. “It is the safest place to start.”

Algernon frowns at her. Another angel slowly nods.

“If I start in the worst case scenario, I can face it. I have to think about it, work through it, plan for it. Then I can back off and hope for one of the less horrific scenarios.”

“You are WEIRD.” says Algernon.

Qia is annoyed. Her wings go bat and blood red.

“Word.” whispers a very young angel.

“WHY?” snaps Qia, “WHY NOT face the worst?”

“Most people never do,” says the moderator.

“What?” says Qia.

“Most people never face the worst. They don’t want to. They are terrified. They are scared. They do things to avoid thinking about it. They skip that step and just go straight to hope.”

Qia glares at her. The moderator smiles and her wings go black as pitch.

“We aren’t PEOPLE. We are ANGELS.” says Qia, nearly snarling.

Algernon laughs. “Yeah, well, some of us do not want to think about the worst either. That is Gawd(esses) job.”

Qia is doubly pissed off to be crying. “No, we have to think too.”

“Qia, I agree, but it is hard.” says the moderator. “That is why you have the job you have. Because you are willing to go straight to the dark.”

Qia has her face in her hands.

The angels surround her, soothing, and start to sing.

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.

Navigating disability

I am having an interesting week regarding disability. Maybe it will make me a curmudgeon.

A woman says, “It must be difficult to be disabled, with your lungs.” I wear my oxygen to sing in chorus. I did the concert without the oxygen but had to drop some held notes at the end. I get goofy when I am hypoxic. I also write really strange rhyming songs when hypoxic, which I recorded.

I reply, “Well, my mother and father and sister are all dead, so by comparison I am doing well.”

She looked horrified. “ALL DEAD?”

“Yes.” I said.

Mother at 61, father 75 and sister at 49. Cancer, emphysema, cancer. I am so lucky that I don’t smoke and have always disliked sodas and thought that addictive things were very dangerous for me before I started college.

I also attended a Roam Echo Telemedicine yesterday, about Long Covid. WOW. It was EXCELLENT.

https://hsc.unm.edu/echo/partner-portal/echos-initiatives/long-covid-fatiguing-illness-recovery/

Yesterday’s program was given by an attorney, discussing disability. She was describing how the chart notes can damage a patient’s chances of obtaining disability and she gave us forms to help us document disability successfully.

She put the number of people with Long Haul Covid at 30% of the not hospitalized people.

Thirty percent. That is HUGE and damaging. I have heard numbers from 10-30%.

There were also physicians attending the Roam-Echo program who have Long Covid and are realizing that they can’t work to the level they did before. Some can’t work at all.

The panel recommended neuropsychiatric testing if the patient is having any trouble with memory or executive function or brain fog. Document, document, document.

Not only that, the previously taped programs are linked to the site above. So I can watch the rest of them. It is FREE and I get Continuing Medical Education from it.

I trained in Family Medicine from 1989-93 in medical school and residency 1993-96. When I was in school I got virtually no training on how to do disability paperwork. Or even how to tell if someone is disabled. The truth is that people do not want to be disabled. In our culture it is shameful and anyhow, social security disability is often $1000 per month. Try living on that. Unenviable.

It turns out that I am lucky or smart or some weird combination. I bought disability insurance way back in medical school and paid $1000 per year for 29 years. I used it twice before 2021. I was on bed rest for 3 months of preterm labor. My insurance doesn’t kick in until I have been off work for 3 months. I wrote them a letter and said I expected to return to work six weeks after having my child, unless there were complications. The company paid me for an extra week. I called them and basically they said, we are so happy to have you return to work that we do not care.

The second time was after my third pneumonia. Strep A and my lungs and muscles were trashed. Both burned like strep throat. It hurts. I was out for six months and then worked half of my usual for another six months. Really I was working about 1/4 of a regular Family Practice Physician. I was seeing 4-5 patients a day and then sleeping for 12 hours, exhausted. A “normal” load is 22 or more. Which is not really sustainable with today’s complex patients, but that is another essay. I had chronic fatigue, MECFS, as it’s now called, but I was in denial. I never got past 8-10 patients a day for the next seven years. I was also running my own small business and had continual hostility from the only hospital in the county. I was one of three independent practitioners. I really do not understand why they thought my tiny clinic was a threat, but whatever. They could grow up.

From 2014 to 2021, I asked any patient with upper respiratory symptoms or a cough to wear a mask for the visit and I masked too. I explained that if I got a fourth pneumonia, I would be disabled for Family Practice medicine. I hoped it wouldn’t happen. I masked the people with allergies too, because after all, you can have allergies AND a cold. When Covid-19 hit, my patients just rolled their eyes and wore the masks. I only ever had one man, a new patient, object. “I won’t wear a mask,” he said.

I said, “Sir, you don’t have to. But I won’t see you without a mask, so please leave and go to Urgent Care.” This was in my waiting room.

“You mean that!” he said.

“Yes I do. I get pneumonia, so that is a firm policy.”

He put on the mask.

I closed the clinic in early 2021. Covid-19 hit us too hard and we were a shoestring clinic anyhow, with 8-10 patients a day. I went to work in the next county. I kept walking into patient rooms where people had their masks off. I had pneumonia in five weeks.

So it goes.

My disability insurance is paying. I did have to hire an attorney to get the company to explain the policy rules clearly. I don’t speak legalese, I hate it, and I think that insurance companies will use any loophole they can find to get out of paying. So far I am lucky to have navigated this. Now I have to look over my policy again, because some policies change after two years of paying and they don’t have to pay if you can do ANY paid employment. It’s pretty clear that I can’t. I went for a beach walk yesterday and then crashed for a two hour nap and then slept 8 hours last night. Any labor, walking OR brain, will crash me. ME-CFS sucks. I think we will have a handle on it in another decade and it’s clear that it is an immune system response. Too late for my employment, though. Ah, well. I got 30 years in. I was annoyed because I was NOT planning to retire yet. I keep running in to people who say, “How do you like retirement?” “I didn’t retire. I am disabled by my fourth pneumonia and grumpy about it.” “Oh,” they say. I should do the social thing, “Love it!” but I’ve never been good at that anyhow. I joke that I tell the truth because I am often not believed, so why bother to lie?

At any rate, 10 or 30% of the people who have had unhospitalized Covid-19 is a huge number of people, and we do not know how long Long Covid will last or how to resolve it. Stay tuned. I hope it is less than a decade, but it will be a little while yet.

Prayers and blessings for all.

The photograph is the really beautiful agate I found yesterday. For the Ragtag Daily Prompt: curmudgeon.

Long Covid and fatigue

Sometimes medical articles are SO IRRITATING! Like this:

Symptomatic Long COVID May Be Tied To Decreased Exercise Capacity On Cardiopulmonary Exercise Testing Up To Three Months After Initial SARS-COV-2 Infection

Healio (10/18, Buzby) reports a 38-study systematic review and meta-analysis “suggested with low confidence that symptomatic long COVID was associated with decreased exercise capacity on cardiopulmonary exercise testing up to 3 months after initial SARS-COV-2 infection.” According to the findings published in JAMA Network Open, “underlying mechanisms may include but are not limited to deconditioning, peripheral mechanisms, hyperventilation, chronotropic incompetence, preload failure and autonomic and endothelial dysfunction.”

Wouldn’t it be nice if they believed the patients?

Let’s break this down. What does it all mean? Ok, the “low confidence” irritates me because it implies that the physicians can’t believe the patients who say “hey, I am short of breath and have a fast heart rate and get really fatigued if I try to do anything!”

I have had my fourth bout of pneumonia with shortness of breath and tachycardia. This time, since I am older, I had hypoxia bad enough to need oxygen. This is the FIRST TIME that some physicians have actually believed me. They believed the pulse oximeter dropping down to 87% and below, with a heart rate in the 140s, but they did not believe me and some accused me of malingering, for the last 19 years. Can you tell that I am a little tiny bit annoyed? If my eyes shot lasers, there would be some dead local physicians. And I AM a local physician, disbelieved by my supposed peers.

Let us simplify this gobbdygook: “underlying mechanisms may include but are not limited to deconditioning, peripheral mechanisms, hyperventilation, chronotropic incompetence, preload failure and autonomic and endothelial dysfunction.” The way I think of it is that sometimes a pneumonia will cause lung tissue swelling. Ok, think of the air space in your lungs as a large balloon. Now the wall of the balloon swells inwards and suddenly there is half as much air space. Guess how your body takes up the slack? The heart goes faster and you have tachycardia. This is a very simple way to think about it. I have tested patients who complain of bad fatigue after an upper respiratory infection with a very simple walk test. 1. I test them at rest, heart rate and oxygen saturation. 2. I walk them up and down a short hallway three times. 3. I sit them back down, and watch the heart rate and oxygen saturation. I watch until they are back to their seated baseline.

A friend tested recently and his resting heart rate was 62. After walking, his heart rate is in the 90s. H does not have a pulse oximeter, but his oxygen level is probably fine. However, that is a big jump. He has had “a terrible cold” for 8 days. I would bet money that his heart rate normally doesn’t jump that much. He still needs recovery time and rest.

In clinic, I had people who were ok at rest but needed oxygen when they walked. We would get them oxygen. More often, they did not need oxygen, but they were tachycardic. When they walked, their heart rate would jump, over 100. Normal is 60-100 beats per minute. If they jumped 30 beats or jumped over 100, I would forbid them to return to work until their heart rate would stay under 100 when they walked. If they went back to work they would be exhausted, it would slow healing, and they might catch a second bacteria or virus and then they could die.

Patients did not need a pulse oximeter. I would teach them to take their own pulse. The heart rate is the number of beats in 60 seconds. I have trouble feeling my own wrist, so I take mine at my neck. It’s a bit trickier if someone has atrial fibrillation but the pulse oximeters aren’t very good with afib either.

When I have pneumonia, my resting heart rate went to 100 the first time and my walking heart rate was in the 140s. I had influenza and felt terrible. My physician and I were mystified. It was a full two months before my heart rate came down to normal. I was out of shape by then and had to build back up. If I tried to walk around with my heart at 140, I was exhausted very quickly and it also felt terrible. The body does NOT like a continuous fast heart rate and says “LIE DOWN” in a VERY FIRM LOUD VOICE. So, I lay down. Until I recovered. For a while I was not sure if I would recover, but I did. This time it was a year before I could go to part time oxygen.

The fatigue follows the heart rate. Tachycardia is not good for you long term. If the heart is making up for reduced air space in the lungs, it doesn’t make sense to slow the heart rate with drugs. You NEED the heart to make up for the lungs. You need to rest, too!

Blessings and peace you.

The photograph is Elwha, helping me knit socks. With the bad air from the fires and my still recovering lungs, I am staying indoors and knitting socks .

A Good Reaction 2

I am still working my way through my immune response to an influenza shot and six days later, my Covid-19 booster.

I am kicking myself a bit for having them that close together, but at least my immune system responds. I think my immune system takes a shotgun approach and raises ALL the antibodies, and since I most probably have some antibodies that attack my own tissues, it’s not terribly much fun. I’ve had to put pulmonary rehab on hold until my fast twitch muscles work again. They aren’t working and my slow twitch muscles are very pissed off and stiff at having to do double duty. If I do aerobic things, my rib muscles hurt for two days. THAT feels awful.

The good thing (ha.) is that I am having the antibody response but I do not have pneumonia. The working theory is that I have PANS and antibodies to tubulin. Tubulin powers muscles, including lung cilia. Their job is to clean any trash out that gets breathed in. I am at much higher risk for getting pneumonia while the lung cilia are on auto-immune vacation. I am mostly staying home and masking when I go out. A friend got exposed to Covid-19 and refused to test at day five. Well, ok for him, but he could be asymptomatic. So he’s not allowed anywhere near me for at least another ten days. I disapprove of his callousness towards me and others.

Tobacco also paralyzes lung cilia. When I was working I would warn smokers that they might cough more when they stopped smoking, because the cilia would wake up and clean house. “Hey! No one has swept here in years!” A year after quitting smoking, the lung cancer risk drops almost to that of a non-smoker, because those cilia clean house. Isn’t THAT cool?

I don’t know how long my fast twitch muscles will be screwed up. With the last pneumonia, it was nearly a year before the antibodies finally went down. I woke one morning with my slow twitch muscles insanely stiff and my fast twitch back but weak as a newborn kitten. My slow twitch muscles were yelling at my fast twitch: “Where have you BEEN? We’ve been doing YOUR WORK!!” My fast twitch were confused, weak and surprised. I could barely walk down my stairs that day.

Even so, I am lucky. I have a version of chronic fatigue, but because only my fast twitch muscles are affected, I can still do stuff while sick. The people who can barely get out of bed, my working theory is that it is both the fast twitch and the slow twitch muscles that are affected.

And then there are the brain antibodies. Ugh. The silver lining is that the antibodies make me a bit OCD and a bit ADHD, so I am organizing the house. I vacuumed the stairs. That sounds trivial except that I HATE the vacuum. I usually use this peculiar cat hair sponge thing on the stairs, but this time I got the vacuum out. I think organizing and vacuuming are hella funny symptoms of autoantibodies.

Here is a blog post by another physician, also about brain antibodies and encephalopathy. Brain inflammation.

https://www.potomacpsychiatry.com/blog/infectious-diseases-and-psychiatric-illness

Great blog post. And the NIH paper on multiple studies of encephalopathy:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6455066/

If I have the energy today, I may try to look up the trajectory of antibody rise and fall after immunization. My brain tells me somewhere between 6 weeks and 6 months, pulling old data from somewhere, but I took immunology classes when I was working at the National Institutes of Health (late 1980s) and in medical school (early 1990s), so there may be new information. Science changes. I am hoping for less than six months really, and meanwhile trying not to get pneumonia.

Blessings and peace you.

I took the photograph in 2021, while I was REALLY sick. Glow in the dark Zombies stealing the cat food. I have to entertain myself somehow when I have pneumonia.

A good reaction

The last ten days sucked but the results are probably good.

What? Wait, why?

I saw the pulmonologist week before last on Wednesday. Her office does not give the new Covid-19 shot but does give flu shots. I got my flu shot. It didn’t seem to bother me much except that I felt a bit tired and grumpy.

I saw my family practitioner on Tuesday, after my pulmonary rehab. For the first time I did not improve in pulmonary rehabilitation (12 weeks, twice a week). I also seemed to have a faster heart rate, up to 140 beats per minute, on the treadmill. My doctor had me walked and even going around the block, my heart rate went to 115. Weird, I thought.

My family doctor did have the new Covid-19 vaccine so I got that. The next day I was more tired and grumpy. On Thursday I lost ground on the treadmill and felt awful and my heart rate just seemed high all the time.

Oh. This is an appropriate reaction for me to two vaccines one week apart. What? you say. Well, when I get pneumonia (four times), I have a fast heart rate response, shortness of breath, fatigue and I feel grumpy and wired. The theory is that I have antibodies to the dopamine receptors, that turn the receptors ON. Dopamine can raise your heart rate. At the same time, I have antibodies to tubulin. Those antibodies make my fast twitch muscles not work right, as well as lung cilia. So: fast heart rate, treadmill is much more difficult, and I started sleeping ten hours a day.

This means my immune system is working. It is making LOTS of antibodies, which is what I theoretically want it to do, though I would rather not have the dopamine and tubulin ones. Just antibodies to influenza and Covid-19. However, my immune system seems to have PTSD and when it makes antibodies, it makes them to EVERYTHING. This makes me very tired, grumpy, screws up exercise and gives me shortness of breath and a fast heart rate.

How long will it last? I am not entirely sure. With infections, antibodies rise and then fall over 3 to 6 or more months. The naturopaths say that food intolerance antibodies fall in three weeks if you stop eating the offending item. I want my Covid-19 antibodies to persist for 3-6 months or more, flu antibodies as well, but I’d like the ones that give me a fast heart rate and shortness of breath to drop right away!

I guess I will find out. At least my immune system works, however oddly.

Blessings and peace you.

I took the photograph of the Great Blue Heron just after she took off yesterday. I am trying to catch more birds in flight! Mostly I catch parts of birds, the tip of a wing, or feet. I am really pleased with this one.

Mourn

Thank you, Queen Elizabeth II, for choosing this time to pass, to die.

The world can use public mourning now, a formal ceremony. I tear up every time I look at the lines of people watching, standing, waiting, filing past your coffin.

Perhaps we should set up a coffin for all the dead, a field of coffins, doll coffins, hundreds, thousands, a million for the United States alone, and millions for the world, for all the dead from Covid-19.

And then we need more coffins, for those who died because care was delayed during the pandemic, screening for cancer, treatment for cancer or heart disease or lung disease. Let us set them up as well.

And then we need doll chairs, hundreds and thousands and millions of doll chairs, for the people with long haul Covid, to acknowledge that we don’t know if they will get well, will rise from their beds and chairs.

And white coats, hundreds and thousands and millions of white coats, some neatly on hangers, other bloody, others thrown on the floor, for the first responders, some dead, some quitting, some ill, some deciding that they can’t do medicine or fire fighting or policing any more, some stubbornly continuing in their jobs.

And job advertisements, on tiny doll computers, doll newspapers, doll signs in windows, saying help wanted, help, help, people are quitting, people are too sick to work, people have died, people are wondering why they should work in public, people are afraid and angry and hurt, help wanted.

I tear up when I watch the public mourning. I remember my mother, my father, my sister, all dead before the pandemic. I remember other dead, family and friends. I think of all the dead that I know, starting to outnumber the living that I know.

Thank you Queen Elizabeth II, for this formal and public mourning in this time of confusion and grief. Your last public service, for which I and many others, tear up and thank you.

___________________________

The photograph is from a friend’s dollhouse.

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.

Covid-19, Long Haul and the immune system

“Whether immune-mediated secondary OCD could also develop as a consequence of COVID-19 poses a highly relevant research question to be elucidated in the near future [35, 36]. The first studies of their kind have demonstrated infection-triggered neuronal antibody production against various antigens in COVID-19 patients who were presenting with unexplained neurological symptoms [37].” from https://www.nature.com/articles/s41398-021-01700-4

Um, yes. It is looking highly likely that chronic fatigue, fibromyalgia, and Long Haul Covid-19 are all immune system responses. They are not simple at all. They can involve antibodies, cytokines and killer T cells and probably other things.

Antibodies: the difficulty here is that we all make different antibodies. It’s all very well to say that people with PANDAS and PANS make antibodies to Dopamine 1 and 2 receptors, tubulin receptors and lysoganglioside receptors, but people each make different antibodies. The antibodies can attach and block the receptor or can attach to the receptor and turn the key: act like dopamine, for example. Dopamine makes people tachycardic, a fast heart rate. If dopamine receptors are blocked, that could be a source for “brain fog” and feeling down.

Cytokines: I worked at the National Institutes of Health back in the 1980s before medical school. We were studying interleukin 2 and tumor necrosis factor for cancer treatment. Building 10 had mice on the north south axis and human patients on the east west. It was fascinating. Now I am reading a current book on the immune system. There has been a lot of research since 1988. Cytokines are released by cells and are immunodulating agents. They are a form of communication in the immune system.

Killer T cells: When antibodies coat a cell, there are immune system cells that kill and/or eat the coated cells. This is good if it is an infectious bacteria or a cell infected with virus, but it is bad if it is your own joint cells or your heart cells or, horrors, brain cells. In rheumatic fever, antibodies to strep A attack the patient’s own cells as well as the strep A cells. This is called “pseudo autoimmune” but I am starting to suspect that all the autoimmune disorders are responses to stress or infection or both.

So if you are still reading, you are saying wait, this is awful, what can we do about it?

Our understanding of the immune system is better than 1988 however… it still has a ways to go. I think that Covid-19 and Long Haul Covid are going to seriously accelerate the research in this area. Meanwhile there are some things people can do to “down regulate” or quiet down the immune system.

If antibodies are causing some of the problem, we need to quiet them down. With severe PANDAS in children, plasmapheresis filters the blood and filters out antibodies. However, the body keeps making them. Infection must be treated first, but then the initial antibody response lasts for 6-8 weeks. Then the body makes memory antibodies and cells to remember. With reinfection, the response lasts for 2-4 months and then subsides if the infection is gone.

Treat infection first. Then treat urgent symptoms, including urgent psychiatric symptoms. Then work can start on the sympathetic nervous system, quieting down to the parasympathetic state. This is not easy with Long Haul Covid-19 or chronic fatigue or fibromyalgia because people are afraid, confused, in pain, exhausted. I have written about the sympathetic and parasympathetic nervous systems here and here. Start with slow breathing, four seconds in and four seconds out. It takes practice.

I have been getting feedback at the pulmonary rehab. When I arrive, they take my pulse, 02 saturation and blood pressure. They put the pulse oximeter on and often I am up in the 90s. I slow my breathing and watch my pulse drop. One day I came in relaxed and my initial pulse was 71. When I was a little late, it started at 99 and came down. The therapist took it off when I got my pulse down to 90. We can check our own pulse, the number of heart beats in one minute, or a small pulse oximeter is about $30.

We can’t really “fix” the immune system with drugs. Steroids can quiet inflammation but they make us more susceptible to infection and raise blood sugar and cause multiple problems when used chronically, like osteoporosis. Plasmapheresis is expensive and requires specially trained nurses. Doesn’t a breathing exercise sound a lot more DIY and cheaper too? You got this. Practice, practice, practice.