Category Archives: rural medicine

by

In the box

Wednesday was interesting and frustrating and part was beautiful.

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

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

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

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

“Hmmmm.” she says.

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

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

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

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

“Do you cough anything up?”

“No.”

“Do you cough now?”

“Yes, if I exercise or get tired.”

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

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

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

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

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

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

________________________

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

Methacholine test.

by

pulmonary rehabilitation

I am fractious and grumpy when I first go to pulmonary rehabilitation at my local hospital.

This is because I have local hospital PTSD because of past treatment. However, there is only one hospital in my county.

I am anxious and tachycardic when I first arrive. I have sent patients to cardiac rehabilitation and to pulmonary rehabilitation, but it’s the first time I’ve gone. My doctor did not refer me until I ask her. I thought it up while I was talking to my insurance company’s chronic care person. You know you are desperate when you call your insurance company for ideas. The insurance company is motivated to pay for pulmonary rehabilitation because I am expensive. I have had loads of tests this year and cost a bunch of money. They would like me well. Me too. So yes, I qualify for pulmonary rehab by virtue of four pneumonias in nineteen years and this time a year on oxygen continuously and still part time now.

I have two people to help me. One is a respiratory therapist and the other a physical therapist. I am an unusual referral. Many of their patients have chronic obstructive pulmonary disease and/or emphysema, usually from cigaretes, but also from things like asbestos or alpha-1-antitrypsin disorder or progressive muscular disorders.

They explain. There are 24 visits, over 12 weeks. I come in twice a week. I am weighed, they ask about symptoms, and we go to the small gym. It has three treadmills, three stationary bikes and three of those semi-horizontal not really a bike things. I pick the treadmill. After I describe my lung weirdness, that a fast heart rate preceeds hypoxia, they put a wrist pulse oximeter on me. Unlike the little finger ones, it can pick up heart rate and oxygen rate even when I am walking on the treadmill. My blood pressure and pulse is checked and I start the treadmill. I go slowly the first time. My heartrate is over 100 to start with, but that’s partly the PTSD reaction. I can slow my heart rate just by slowing my breathing and not talking, into the 80s.

Here is how I looked the first time:

https://www.reddit.com/r/FunnyAnimals/comments/zadptv/this_is_whats_happened_in_gym/

Ok, not really. I start walking on the treadmill and go for 30 minutes. Blood pressure and heart rate are checked mid way through. The only time I drop my oxygen level is when I walk AND talk and then I drop it to 87. I stop talking.

After the treadmill, there is another 15-20 minutes of “patient education” about the lungs. This is usually a video, discussion and handouts. They can have up to 3 people simultaneously. At first there is another woman, but she finishes her 12 weeks. She is still on oxygen. I am doing the treadmill without oxygen. “What is your goal?” asks the respiratory therapist. “I want to ski this winter.” I say. She blinks.

The patient education alternates with lifting hand weights. The physical therapist does that with me. There is a stretching session each time too. The weights are slow twitch muscles so that is easier for me to push.

On the third day on the treadmill, I start pushing myself. My heart rate before starting was 81. I get to 120. “Um, don’t push it further than that.” says the therapist.

“Why not?” I say.

“Well, the guidelines are that we’re supposed to not have the person exercising at a heart rate of more than 30 over their baseline.”

“Oh,” I say. I am at 40 over. I slow down a little, aiming for a heart rate of 115. My blood pressure is between 90 and 115 systolic to start with, even anxious, and goes up to the 140s or 150s in the middle of exercising. If I talk too much while I am on the treadmill, my oxygen level starts to drop. It drops the third time down below 88 and the therapist says, “Shall I get oxygen?” “No,” I say. “I just need to shut up.” I do and my oxygen level recovers.

I steadily improve on the treadmill. I can enter my weight and it will measure “METS”. I start out at only a few mets. My goal is as high as I can go. By week 8 I am pleased to be alternating walking and running and I am averaging over 8 mets. Bicycling takes 7-9 mets, and more if you race. I want to return to bicycling.

Then I get my flu vaccine. I feel terrible the next day and cancel my rehab. I see my doctor for a routine visit the next Tuesday and she gives me the covid booster. That hammers me. I go back to being tachycardic much more easily and my fast twitch muscles are not working again. I contact my cardiologist and primary, do I put pulmonary rehabilitation on hold?

I decide to go and I do not drop my oxygen. However, I get tachycardic much more quickly, I can’t get up to over 8 mets, and it feels truly terrible. And my muscles give me hell and hurt horribly for the next two days. I put pulmonary rehab on hold and wait and do slow twitch exercises. The working theory is that there are antibodies to my fast twitch muscles, so the vaccines have activated my immune system. Not just antibodies to influenza and covid, but also the ones that make my muscles not work and hurt. A fibromyalgia/chronic fatigue flare. I start sleeping 12 hours a day again, as I did when I got sick over a year ago. I am really anxious at first but there are no signs of pneumonia, I am not hypoxic, and it’s mostly muscles and fatigue.

After three weeks I return and do my last four pulmonary rehab visits. It hurts way more than the first 8 weeks and it is way more exhausting. I don’t like sleeping 12 hours a night. It could be worse, though. Some people have chronic fatigue where they have to lie in bed most of the time. I don’t have that, so I consider myself lucky. Mine is fast twitch muscles only. Presumably theirs is fast and slow twitch muscles. I have an annoying but relatively mild version of chronic fatigue.

I graduate from pulmonary rehabilitation. Many thanks for the help with my muscles! I want a wrist pulse oximeter, but they cost $700 and I dont’ really need it. By now I can tell when I have a fast heart rate and I can tell when I am getting hypoxic. It makes me goofy and silly, though I normally have that anyhow.

Many thanks to Jefferson Healthcare’s Pulmonary Rehabilitation Department. And if you have had pneumonia more than once or long Covid, consider asking your doctor to refer you. It makes me much more confident about exercising and pushing myself and what is safe. And eventually these stupid antibodies will fall off the receptors again. I hope.

________________

For the Ragtag Daily Prompt: fractious.

PS: The Rehabilitation Department was closed then open then closed then open during the last two years. They did not have many people when I was there. Get in soon, because there are limited spaces!

by

In the dark

I choose to dwell in the dark with the monsters.

I came here because I wanted to understand how people could be monsters. People turn in to monsters sometimes. Not the crazy people or the serial killers: just normal people. They have enormous fights in their families. They get drunk or use drugs. They kill themselves with cigarettes. They sit unmoving in front of the television. They fight family or close friends. Families sue each other over the parent’s will. They fight over the stuff or over mother or over who will take care of father. They disown each other. They say β€œI only let nice people in my life.” That leaves me out. And I don’t want anything to do with anyone who says that. That is monstrous. Do they turn the other cheek? Do they love their neighbor as themselves? No. They are monsters.

I kept studying the monsters and studying them, until I found my own. I rescued mine from a deep hole. The monsters were babies. They were filthy and frightened and crying and abandoned. I washed them and diapered them and fed them and wrapped them in blankets. They stared at me, sullen. They had no idea how to respond to being cared for. I had to learn to love them. I loved them right away, even though they were monsters. I cared for them and they grew up, loved, happy, adults.

And then I see the monsters in other people. People hide their monsters, stuff them in dungeons, neglect them, deny them, scream at them. The monsters realize that I can see them and they start crying. β€œHelp us! Please! Let us out! We are cold! We are hungry! We are neglected!” I learn not to talk to the monsters until the person is gone. The person may never talk to me again if I acknowledge the monster. They think I am the monster. I’ve reminded them of theirs or named them! Most people hate it. I learn, slowly and painfully, that I can only talk to the monsters after their people leave. The monsters hang around. They tell me their stories. They tell me their misery. I hold them while they cry, heads in my lap, howling and breaking things. But eventually they have to return to their person, to their jail, to their suffering.

I like the monsters better than the people. Some people wear the monsters on the outside. Veterans, almost always. To keep people away. They come to clinic and try to scare me. This is very very difficult because I like the monsters. I am delighted to meet the monsters. This is startling and the veteran promptly calms down. I am not afraid. I like the people who wear their monsters on the outside: they are not hiding them. It’s the ones who hide and abuse and torture their monsters: I do not trust those people. And I feel huge grief and sorrow, pity for their monsters. I can’t fix them. The people must each turn to their own monsters. Let them come to consciousness. Face them, comfort them and at last, love them. And this is hard. It is very hard. It is a life time of work. It is emotional maturity. It has nothing to do with educational level. It is hard work worth doing.

I choose to dwell in the dark with the monsters. Because they need me most of all.

Blessings.

by

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.

Poll: 1 in 7 parents have not talked about vaccines with their child’s doctor

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.

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.

by

All of my patients are smart 2

I did a porch call a bit over a year ago. It’s like a house call except on a porch.

A friend/patient asks me to see a long time friend of his. The friend has multiple chemical sensitivities. We meet, the three of us, on his porch.

My friend has had me as a physician but he has not seen me at work with someone else.

I ask a lot of questions and then launch into an explanation of the immune system and how antibodies work.

My friend states, “He can’t understand that.’

I smile at his friend. “Oh yes he can. And you followed what I said, didn’t you?”

His friend grins back and said, “Yes, I did. Most of it. Or enough.”

All of my patients are smart. One day in clinic I think how blessed I am, that ALL of my patients are smart and fascinating people. Then I think, how could that be? And, how lucky am I?

And then I think: everyone is smart.

They are not all educated in the same way I am. They may not be well read. They may not have my science background or my geeky fiction and poetry and song brain. But they ALL are smart.

Some are brilliant at mechanical things. I have a patient who is an expert in restoring church organs and is working 3000 miles away in New York City. “They are driving me crazy.” he says. “You have to have the approval signed off on over 20 groups, historic preservation, the fire fighters, etc, etc, to remove one board from the church. The organ was covered over by bad repairs over the years. We’re trying to get it back. After this I will put in new organs, but this is my last restoration.”

Veterans, teachers, attorneys, physicians, retired computer engineers, car mechanics, marine engineers, parents, grandparents. They are all smart, men and women.

We finish the porch visit with some options and the friend of my friend says he will think about what I said and try some things.

A few days later my friend calls. “I couldn’t believe he was following your science talk, but he was. He got it. He remembers it and understood it.”

“Of course he did,” I say.

“I am actually impressed,” says my friend. “It was really interesting watching you do that.”

That may be one of my weird skills. To be able to listen to the person thoroughly and then respond in language that they understand and a bit more. An assumption, always, that they can follow a complex and intricate idea.

I do not know if they always follow what I say. But they always respond to the assumption that they are smart and that they can understand and that they are an equal. I am explaining from my expertise, but I know they can understand when I explain it correctly.

And I have not seen this in the physicians that I have seen. Out of 22 physicians since 2012, four were excellent and met me and explained as an equal.

The rest did not. They dismiss me. They talk down or avoid me once they realize that they do not understand why I keep getting pneumonia. They are afraid to say “I don’t know.” Four are not afraid and recognize that it’s something weird and say, “We do not understand this and we don’t know how to fix it.”

Four out of 22 have my respect. And that is a sad number. Medical training needs to change and physicians need time to listen and need to learn how to listen.

Meanwhile, all of my patients are smart. And I am so blessed.

by

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 β€œsuggested 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, β€œunderlying 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: β€œunderlying 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 .

by

Rebel in clinic

Right before my hospital district informed me that they no longer wanted my services, I was rebelling. The fight from my perspective, was over good patient care. They had set a quota. 18 patients a day. One every 20 minutes and one 40 minute visit. 8 am to noon and 1 pm to 5. I argued and argued and argued. I knew finishing the note in the room took me 25 minutes on the hateful electronic medical record and I had averaged 16 patients a day my whole career. I was not fast but I was super thorough and had just gotten an excellent report on a chart review and had been told that I was a great diagnostician. Which was mostly due to my nearly OCD thoroughness. I was not diplomatic with the hospital administration.

One day I was feeling wicked, just wicked. I had a brainstorm and started whistling softly. The other two doctors and PA were all in the same small office.

One took the bait. “What is that? I know that song.”

“Oh, we are singing it in chorus. For some reason it is in my head today.” So I sang this song.

I did not have the words memorized. I swear that the temperature in the room dropped and the male doctors hunched in their chairs.

“Yeah, don’t know why that one keeps playing in my head.” I said. “I hope you can all come to the concert!”

But answer came there none.

I took the photograph at Quimper Family Medicine, the clinic I opened after the hospital clinic kicked me out. The skeleton was named Mordechai in a contest. This is from 2014. Mordechai lived in our waiting room every October, with different outfits.

by

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.

by

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.