Category Archives: long covid

by

Brain thoughts

The attendees of the conference are all excited and hopeful at the fleshment of our understanding of Covid-19’s effects on the brain.

I am still absorbing the information, getting ready to write about it.

For the Ragtag Daily Prompt: fleshment.

by

Frame

What is the tree and where is it?

I am still thinking about the Inflammatory Brain Disorder Conference.

The researchers and physicians are talking about the immune system as if it is broken in Long Covid and ME/CFS and the other illnesses, but I am not sure I agree. Maybe the immune system knows what it is doing. Maybe Covid-19 is a really really nasty infection and the immune system sends out antibodies to make us stay down, stay in bed, rest and keep from catching something else. Maybe an antibody that suddenly makes you weird will make you isolate and hide and not interact with the other potentially infectious humans.

Ok, the inflammatory brain disorders that destroy the brain, those are not adaptive. However, I’ve thought that MC/CFS was a “repair mode” since residency.

When I had my third pneumonia in 2014, I refused to admit to myself that I had chronic fatigue. It was sort of obvious. I went back to work six months after I got sick and seeing just four or five patients left me exhausted. I would come home and sleep on the couch. I also skipped breakfast, because I would go to sleep as soon as I ate. My blood sugar was fine and it was not a food allergy. It felt as if my body wanted to do repair work and wanted me to sleep while it was doing the repairs. I would sleep after lunch. For the next six months of work, I slept twelve hours a day and hoped that I would not have more than five patients. Also that I would not get sick.

We had everyone who had upper respiratory symptoms or a cough wear a mask and I wore one too, hoping to not get another pneumonia. That worked. I only got sick when I went to work in another hospital clinic system. I kept walking into rooms with patients with their masks off. I got Covid-19 in a mere five weeks there, after going a year at my clinic without getting it.

I spoke to a friend yesterday. She was talking about her damaged immune system. I said I didn’t think of it as damaged. With enough stress and infection, I think the immune system gets primed. And then it is as if it has PTSD: the immune system says, “Enough already! We are not going to LET you overdo and get sick again! We are putting you DOWN to sleep if you overdo!” It is an extreme version of “listen to your body”, as if the body is shouting. The immune system is hyperalert and goes all out if there is any threat or suspected threat.

Maybe we need to be more gentle with ourselves and each other. The US culture is so oriented to production and work and money as success. But is that really success, if we work 20 hours a day and drive our immune system to desperate measures?

Maybe we need to learn to relax. To take time off. To breathe.

And the talk about Mast Cell Activation Disorder said exactly that. We need to teach how to go from the sympathetic fight or flight crazy to the quiet, relaxed, parasympathetic state. That quiets the immune system down very nicely.

It won’t fix everything, I am not saying that. But it is something everyone can learn. Slow breathe, in five and out five. Practice.

Breathe.

______________________________

The tree is a Redwood and it’s in the Chimacum Woods Rhododendron Nursery. Not just rhodys and on the Olympic Peninsula.

by

BRAINS

On Thursday and Friday I spent six hours daily glued to zoom, for the Inflammatory Brain Disorders Conference. Speakers, both physicians and scientists and physician-scientists, from all over the world, spoke. The research is intensive and ongoing. They spoke about Long Covid, both the immune response and “brain fog”. They spoke about anti-NMDA antibody disorder (the book Brain on Fire) and now there have been over 500 people identified with that disorder and a whole bunch more antibody-to-brain disorders! They talked about PANS and PANDAS and chronic fatigue and Mast Cell Activation Disorder and about the immune system over and over. The new information is amazing and I need to reread all my notes. Psychiatry and Neurology and Immunology are all overlapping in research, along with Rheumatology, since these disorders overlap all four.

It is a medical revolution in the making.

Best news was that 96% of Long Covid patients are better by 2 years from getting sick. That is tremendously reassuring, though the number may change. And the definition of Long Covid is still being sorted out and we do not know if people relapse.

I felt that MY brain was MELTED by the end, but I managed to enjoy the Rhododendron Parade on Saturday and just puttered around the house on Sunday.

by

Working theory

I attended two Zoom one hour programs on Long Covid this week.

Thursday from the University of Arizona, 330 people logged on, hard science with thirty minutes of information about Mast Cell Activation Syndrome. They said 17% of the population, which is huge, if it’s correct. This is not mastocytosis, the cancer. This is the immune system going rather batshit. Though I would frame it differently, as the immune system fighting a really difficult battle.

Friday from the University of Washington. I don’t know how many were logged on. This was at a much more aimed right at the physicians level. People sent in questions and they collated and gave answers. They promised to answer some of the questions later on. My question was whether a high Adverse Childhood Experience Score predisposed to Mast Cell Activation and they did not address that.

So mast cells apparently can produce over 1000 different signals: cytokines, histamines, proteases and I don’t know what all. They are all over our bodies (are you creeped out? I am a little.) near the boundaries: skin, nose, gastrointestinal tract, genitals. They produce different signals depending on what is happening. The Thursday researcher basically said that they could affect nearly any system in the body.

I’ve heard of mastocytosis and even had a patient with it, but Mast Cell Activation Syndrome was barely on my radar. I am not sure if 17% of the population is at risk or has it. It is tricky to diagnose, because the best lab test is a rather tricky and rare one, and it is sort of an orphan illness: few doctors know about it and it does not fit neatly into any specialties. Patients have seen an average of ten specialists before they get diagnosed. Hmmm. Sounds familiar.

This researcher has a ton of papers out, that I have not started reading yet. MCAS is implicated in Ehlers-Danlos, a connective tissue disease and in ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) as well as POTS (postural orthostatic tachycardia syndrome) and can get triggered by Covid-19. Well.

The good thing is that treatment is quieting the sympathetic nervous system to let the parasympathetic take over. The sympathetic is the fight or flight hyper one. Parasympathetic is the rest, relax, mellow out, slow heart rate, blood pressure down, digestion and quiet one. I think United States culture is crazy fight or flight most of the time (We’re number one!– so what?) and the pandemic has put the whole world into fight or flight mode. Crazy.

Back in Family Medicine residency, 1993-96, I had a number of ME/CFS, chronic fatigue patients. They tended to be hyper sensitive to medicines and have all sorts of symptoms which were fluid and changable and difficult to pin down. What I noticed though is that many of them had been super high acheivers or working multiple jobs or crazy high stress, until they hit some sort of wall. Often an infection but not always. The ones I saw wanted to go back to working 18 hours a day. I said, “Um, that’s how you got this, I do not think that is a good goal.” This often pissed people off. Even back then, I thought that chronic fatigue was a body reset, where the body rebels, some sort of switch is thrown, and people rest whether they want to or not. Some do recover but it can take ages. The Thursday speaker seems to think it’s the mast cells doing this.

The UW speakers were careful. They said we do not know how long Long Covid lasts. One said they do not like to diagnose POTS, because POTS is usually permanent and the Long Covid tachycardia usually resolves. They are seeing people who got sick 2-3 years ago and are still sick, but they also have people who have recovered in 9-12 months. They do not know if patients are entirely recovered or whether there will be other problems later. They also aren’t sure that the chronic fatigue like symptoms are the same as the rest of the ME/CFS. Remember when dementia was Alzheimer’s? Now there are all sorts of different dementia diagnoses, Lewy body, frontotemporal, Huntington’s, stroke dementia, alcoholic dementia, Parkinson’s, Alzheimer’s, and others. When I was in residency, we had hepatitis A, hepatitis B and non A non B. Now we are up to G or beyond. Medicine changes and it’s moving as fast as possible for both acute Covid-19 and Long Covid.

The mast cell reasearcher talked about getting the sympathetic and parasympathetic nervous systems back in balance. I think maybe we ALL need that. Every person in the whole world. One way to quiet the sympathetic nervous system is to slow your breathing. Try it. For five minutes, or three minutes. Slow breath in for a count of four or five and slow breath out for a count of five. Let your brain roam around and fuss, but let go of each thought as it passes by and return to counting and breathing.

Slow in, slow out.

Practice and heal.

_____________________

The musicians are Johnathan Doyle and a friend. They were fabulous, last Tuesday at the Bishop Hotel.

.

by

Long Covid and post pneumonia update

I was up above 5000 feet last week and did not need oxygen.

This is wonderful! I was on oxygen continuously from March of 2021 for a year and a half. I was really getting better and then had my Covid booster in early October. I crashed again. Do I regret the shot? No, because the crash is because antibodies went back up. Only some of them, though. My muscles and lungs were not working well again, but brain was fine (ok, some people do not like my brain, but they are idiots) and aside from having to avoid gluten, no digestive stuff.

About a month ago I really started feeling my fast twitch muscles work again. It was two years in March since this fourth pneumonia and I’ve had something Long Covid like after each one. Recovery took 2 months in 2003, 2 months in 2012 and 6 months off in 2014 and then an ongoing mild chronic fatigue, so I worked about half of a regular family medicine schedule. I saw 7-10 people per day instead of 16-22. I was also a single parent running a business with two children, so that has a lot of energy draw as well.

On the second morning there, my pulse was 61 and oxygen level 98% on room air. HOORAY! I am back to baseline from 2014. Since it took 2 years to recover, I really do not want to do this again. No more pneumonia. I have had two more rounds of Covid, but apparently the super high antibody level made it really really mild. An immunologist tested the antibodies since I keep getting pneumonia. He said I have the highest Covid antibody level he’s ever seen. Protective was over 50 and mine was 25,000. I seem to be darn good at making antibodies.

Now what? I have felt better for the last month. I still get tired and have about a half day of the energy level from my 20s or 30s, which was high. I am hiking, up to 6 miles in a day twice two weeks ago. Now to start biking and maybe running. I don’t like to run but it’s good training. I want to ski next winter at least one day. Maybe I will swim too. I used to swim a mile twice a week, but it’s been a long time. Also my swim team daughter expressed scorn for my freestyle stroke. Sigh, children are born to humble us, which sucks.

I am still trying to see if I can work with Long Covid patients. I have rather too much experience with something very like it. But I think I would like to enjoy feeling well for a month or two, first!

Hooray! I hope other Long Covid folks are working their way out of the woods too.

by

Xeno or infection phobic?

So is Xenophobia a pathological fear of strangers or foreigners? Like agoraphobia or arachnophobia? The Mayo Clinic site has a listing for agoraphobia but not for arachnophobia or xenophobia. Perhaps agoraphobia is more disabling. Though with our world having more and more people, xenophobia might be terribly dangerous as well.

Current world population: https://www.worldometers.info/world-population/.

Number of people with Long Covid: at least 65,000,000, though the talk I attended yesterday say that’s a low estimate. Nearly one percent of the world population.

This article in Nature: https://www.nature.com/articles/s41579-022-00846-2 is about Long Covid, the research to date and the areas that need research. This is a very fast moving target with information exploding from multiple labs.

I attended an on line continuing medical education about Long Covid yesterday: https://hsc.unm.edu/echo/partner-portal/echos-initiatives/long-covid-fatiguing-illness-recovery/. This is a global monthly teaching session about Long Covid and current research and diagnosis and treatment. Yesterday’s talk was about immune cell abnormalities that persist and evidence is showing up that they are causing some of the problems. However, as one researcher said, the problems are multifactorial and any system in the body can be affected in more than one way.

Essentially some of the immune cells are puffy, sticky and enlarged. The suspicion is that the postexertional malaise is related to these puffy sticky cells. During exercise, or for some people normal activity, the muscles need more blood flow and more oxygen. The puffy sticky cells are stiff and won’t slide through capillaries easily. The muscles send a panic “I need oxygen!” message to the brain and the muscles do not work. The recovery can take a day or two days because of the food/oxygen deprivation. The researcher said that the same mechanism is suspected in ME-CFS (myalgic encephalopathy-chronic fatigue syndrome).

My muscles are feeling normal. My chronic fatigue is comparatively mild and happens with bad infections or with a vaccine that raises antibody levels, as it is supposed to. That’s how immunizations work. Do I have antibodies that shut down my muscles or do I have puffy cells? I would postulate the former but I can’t be sure right now. My home science kit is not quite up to that study.

When my fast twitch muscles are not working, are affected, it is very weird. They DO NOT WORK RIGHT. It is hard to describe: it is sort of pain, but it’s more of a very very strong STOP EXERCISING NOW message. And then I am exhausted for 1-2 days. In contrast, my muscles are a bit sore after a four mile beach walk 2 days ago and then an intense physical therapy session, but I am not exhausted. No naps the last two days. I have returned to my normal sleep patterns, less hours.

One of the researchers presented new technology that can make a movie of the microscopic cells going though a space with a narrowing like a capillary. Video electron microscopy. They are describing the cell shapes and whether they go through a capillary diameter normally or stick, for people with no Covid, diabetics, acute Covid and Long Covid. All are different. It is fascinating new technology.

I think I am more infection phobic than xenophobic. People all have the same basic blood cells inside, even with lots of different genetic patterns. So far infection phobia has not led me to agoraphobia, but the talk yesterday sure makes me want to keep my mask on.

There were over 350 attendees yesterday from all over the world. Lay people can sign up as well and the videos are stored for anyone to watch. I will watch yesterday’s a second time because five different scientists presented in 30 minutes and I ignored the chat which was going full speed with references to look up. Homework. And progress is being made.

Blessings.

______________

For the Ragtag Daily Prompt: xenophobia.

______________

I took the photograph two days ago from East Beach on Marrowstone Island. The distance between the sea lions and the container ship is much further than it appears, and this is taken with a Canon PowerShot SX40HS zoomed most of the way out.

by

Long Covid and overdoing II

I overdid a bit yesterday too.

Friends drove me to the airport when I wasn’t really strong enough on my own. It is two hours away at least. I am very very grateful. They kept my car. I drove them to the ferry and picked one of them up last Friday. My friend L said my brakes were suspect. Two days ago I drove to his house and he took a look. I mostly held a flashlight. The front brakes are fine but the back shoes were down to very thin. I got a crash course in brakes (2006 Scion, a very useful black box of a car) and we took the drums to be ground. We ordered brake shoes and the kit of annoying springs and things.

Everything was ready yesterday so he picked me up. I held the flashlight and then held the back of the pin for one particularly annoying and difficult set of springs. He is a very good mechanic, though not primarily cars. A cell phone picture of the brake before taking it apart and studying the intact one: useful tips. He also pointed out the blue paint. Someone added that in order to keep it all straight. We got it all back together and then tested them. It did need some tweaking to tighten the emergency brake to working order again. I got home at about 4:30pm. Whew!

So today I am tired again and rather achy, but not too bad. I may attempt a quiet day, though we never know what will happen. The best laid plans can be altered at any moment. I hope to recharge my energy today!

__________________________________

For the Ragtag Daily Prompt: recharge. And speaking of recharging, here are two experts:

by

Long Covid fatigue and overdoing

I’ve been reading journal articles about Long Covid. The three primary symptoms are fatigue, shortness of breath and brain symptoms. Mostly brain fog. Then there is a long long list of other symptoms.

For the fatigue, the journals are recommended graded increase in activity “without triggering a fatigue crash”.

Now, that is all well and good, except it’s a moving target. The amount of activity one can do is NOT static.

I have something that caused CFS-ME. My fast twitch muscles came back on line sometime between Christmas and New Years. GREAT! Then I was helping a sick friend until January ninth. I flew home and then there is all the unpacking and bills and catching up and sweeping up catfur dust elephants. Finally I got to exercise. I walked a couple miles on the beach one day and then around town with a friend the next.

Which crashed me. The third day I spent lying on the couch. My muscles basically were ALL hurting and saying, “We hate you.”

The fast twitch are back on line but they are weak as newborn kittens. For the first two days I felt strong and normal. The third day I felt like a steamroller had gone over me.

So did I do the wrong thing? Well, no. I won’t know what I can and can’t do it unless I do it, right? After four rounds (or more) of pneumonia with muscle weirdness, I can tell when it’s improving. Then I have to rebuild the working muscles. Also my slow twitch posture muscles are frankly pissed off and have been doing all the work and are not very interested in working with the fast twitch when they first come on line. “Where have YOU been? We’ve been doing YOUR work AND OURS.” I have to learn to walk again.

I was doing well with pulmonary rehab in the fall, building up on the treadmill twice a week, until I got my flu shot and then my Covid booster. Well, they are supposed to raise antibodies. Unfortunately they raised the ones that make my fast twitch muscles not work. Muscle blocker antibodies. I am just glad that my slow twitch work, because I sympathize hugely with the people who end up lying in bed. It’s still inconvenient, difficult to explain and annoying.

At any rate, gentle graded increase in activity is all very well as advice. But do you control everything that happens in your life? I don’t. Someone gets sick, the mail goes awry, a billing company changed their address and I didn’t get the memo. It all takes energy. Some days I am going to overdo, especially when I feel better. And it rather sucks to lie around the next day, but it is ok.

Over the last week I had a friend up from Portland. We walked three days running. On the third day we walked paths from my house to the lighthouse and back. About 5-6 miles. I was not quite limping when I got home, but I knew I could rest the next day. My muscles got HUNGRY and are continuing to improve.

So when your doctor tells you “graded activity to avoid fatigue crashes”, remember that it is not wholly controllable because life is not wholly controllable. Some days you will do great and others, well, hmmm. That was too much.

Blessings.

https://www.aafp.org/pubs/afp/issues/2022/1100/long-covid.html

https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html

by

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.

by

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.