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!

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.

sleep and defiance

Oh, gosh, CNN is making everyone panic about sleep again: https://www.cnn.com/2022/11/08/health/sleep-deprivation-wellness/index.html

Don’t buy it. It used to be 8 hours. Now they are saying 7 in this article. SLEEP AT LEAST 7 HOURS OR YOUR BRAIN WILL MELT.

Nope. The media likes us to panic because it sells papers and gets shares. Don’t buy the hoopla.

After all, I took call at night for 30 years and my brain has not melted. (Ok, if you disagree, post your own blog, heh, heh.) Starting third year of medical school. Sometimes it was every third night, sometimes every fourth. We were often up and awake and working for much of the night and then through the next day. If we had to be ready for rounds at 8 am, we had to be there earlier to see the patients, check the lab work, check any studies, drink a gallon of coffee and then be coherent on rounds, where the faculty physician might quiz us about the nineteen causes of high potassium. Uh. Taking too much potassium is one. Kidney failure, diabetic ketoacidosis, etc, etc.

I made up the number nineteen.

Anyhow, I was a sleep rather than eat person. If we got a break, I would go to sleep and skip food. The bad rotations were obvious because my weight would drop. We’d meet for “nutrition rounds” in the morning. I would skip lunch, hoping to have it at home post call, but the list might have things added even as I ran around checking things off. At last I would stop for lunch at 2 or 3 or 4 because my brain was no longer functioning.

Doesn’t sound very healthy, does it?

Here is a post on sleep from 2015: https://drkottaway.com/2015/01/08/sleep/. I sent a copy to our sleep specialist and he liked it.

When I got my flu vaccination and covid booster a month ago, it hit me pretty hard. I am sleeping as I normally do at night, for 6.5-7 hours. But I also started napping, once or twice a day. I was sleeping 11 or 12 hours total daily. I canceled pulmonary rehabilitation exercise, because it wiped me out. I was starting to feel better after three weeks, so I restarted pulmonary rehab. I promptly slept 12 hours a day again and my muscles gave me HELL.

So what in the heck IS this? Well, healing. My body is knocking me out to do repair work. It’s sending a pretty clear message that running on a treadmill is not ok right now. My immune system is busy making antibodies and is saying HEY WE DO NOT HAVE ENERGY TO SPARE FOR ANYTHING ELSE. This is sort of annoying except that having had four rounds of really bad pneumonia, the last one requiring oxygen for a year, still on oxygen to sing and for heavy exertion, I am willing to listen to my body. It is annoying, but: my mother, father and sister are dead, so even though I am struggling some, I’m not dead. It’s all relative, right?

When I had pneumonia #3 (2014) and pneumonia #4 (2021), both times part of the healing is sleeping twelve hours a day. I went back to work six months after the 2014 one and promptly slept twelve hours a night. I was seeing 4-5 patients a day and could barely do that. I went into denial about chronic fatigue, but I knew I had it. NO WAY, I AM TOUGH. Well, I am tough, but that means chronic fatigue and not dead.

I do not worry about sleeping 7 hours a night or 8 hours. I sleep when I get sleepy. Naps are fine and one gets to relearn napping after age 50 or 60 and it’s ok. If you need to stay awake after lunch, have a small lunch and no alcohol. Alcohol is not good for sleep in the long term and neither is marijuana. Benzodiazepines are worse than either. Ambien and those drugs are approved for “short term” use, meaning two weeks. Great. We don’t know what it does if you are on it for years, but some of us note that those drugs are closely related to the benzodiazepines. I think the most addictive drug is tobacco, followed by benzodiazepines and then methamphetamines. That is from asking patients and observation over 30 years. There are individual quirks though, and I have had people say, “Alcohol is no problem but the first time I was given oxycodone I wanted more.” Sometimes there is a bit of denial in those statements.

The photograph is me doing my second sleep study last week. I scored. Um, or rather, it was a positive test. Sleep apnea, darn. I am now waiting for my bipap machine. The funny bit is that I had to drive an hour to the lab. I was supposed to be there at 8. I got there an hour early because I get really tired at night. The tech let me in and wired me up. “But,” she said, “you can’t go to sleep until 9, because I have another patient and they are not here yet.” “Ok,” I said. I read for a while in the chair, put my head back and (don’t tell) fell asleep.

She came back in, did the final connections and then left. There is a ceiling camera and a disembodied voice. We tested the connections. “Flex and extend your right foot.” “Now breath through your nose.” I did and immediately fell asleep. She woke me, “Breath through your mouth now.” “Was I asleep?” “Yes.” The wires didn’t bother me much, though I had to surface part way during the night to change position.

I’ve slept sitting up in hospital meetings. I fell asleep standing against the wall in medical school. It is really a blessing to be able to fall asleep.

The year my father died, I had a terrible time falling asleep. His will was very out of date, written 40+ years before. It was a mess. His house had 13 years worth of unopened mail. I used Jon Kabat Zinn’s Mindfulness Meditation tape to fall asleep. But I used it in a rather weird way. He has a section where he says “Do NOT fall asleep.” It was a body scan. I would think, hey, you can’t tell ME what to do, and I would always fall asleep during it. So there, Dr. Kabat Zinn. Thank you.

The pandemic is enormously stressful, not to mention all of the other things. You can still relax though. What relaxes YOU? Stupid animal videos? A walk around a yard or park? Dancing in your kitchen? Knitting? Reading your absolutely most boring textbook? Put the phone and the television and the computer away at least one hour before you want to sleep and preferably two hours.

And here, to relax you, are pictures of sleep: https://drkottaway.com/2018/04/30/zzzzzz/

Blessings.

Chronic pain #I forget

The CDC has a new set of recommendations for chronic pain.

I will write about them. I have to read them first. Hurts too much, right now, the election, and all the pandemic fighting. Stress people and you see what they are really like.

My church has melted down into a huge fight. I was in a chorus singing instead of being in a meeting. Apparently there is a group that says brown people have “taken over” the national organization of the church. Um. Hello. That is discrimination. Does the color of the skin matter if it is a good leader? Why are people insane? I filled out a county survey on drug use today. I know we have methamphetamines and heroin in our high schools because patients have told me. But then I get to the race question. What race am I? I checked OTHER and wrote HUMAN. The race bullcrap is NOT SCIENCE. I haven’t done any genetics testing. I DO NOT KNOW WHAT RACE I AM THOUGH I LOOK WHITE.

It is important for medicine in that there is proven discrimination with less screen health services offered to “brown” people, whatever the heck “brown” people means. I wish the heavens would turn us all the same color over night. Or perhaps blind us. That is not nice of me and I do not care.

I am glad that this horror came out in my church. Because now the discrimination is out in the open. And the committee has sent out a message saying NO. We WILL stay part of the national organization. We WILL not give in to this discrimination. AND I SAY HOORAY AND BLESSINGS ON THEM.

Here is the new CDC set of recommendations for chronic pain: https://www.cdc.gov/mmwr/volumes/71/rr/rr7103a1.htm . You can read them yourself.

I read to this sentence so far: “Approximately one in five U.S. adults had chronic pain in 2019 and approximately one in 14 adults experienced “high-impact” chronic pain, defined as having pain on most days or every day during the past 3 months that limited life or work activities (5).”

Part of me is horrified and part of me is calm. Because pain is a part of life. Pain, love, joy, fear, it’s all part of our emotional evolved systems to survive, right? If God is love, God is also pain and fear. It is not a split. It is both.

This song is a love song. But to me, it’s a love song from heroin to a woman. One lovely day, a place where there is no pain. There will be pain on the return, the withdrawal. I have patients say, “You need to get me pain free.” My reply was “I will not get you pain free. Pain free is dead. Or at least, they can no longer tell me if the next form hurts.” In this song, “she won’t let on, that the feelings have got so strong.” Addiction, opioid overuse.

I took the photograph of Elwha yesterday. He is my relaxation mentor.

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.

drkottaway’s werewolf theory

Papers about antibodies and immune system responses are proliferating. About Chronic Lyme disease, fibromyalgia, chronic fatigue, long haul Covid-19. We are near the tipping point of understanding vastly much more about the immune system, though understanding what is happening and being able to “fix” it are poles apart. You have to invent the germ theory before you can invent an antibiotic.

Allopathic medicine currently says that behavioral health disorders are caused by “neurotransmitter imbalances” in the brain. That’s a bunch of vague hooey, isn’t it? There is one mouse neuron that has been studied and has 300 different kinds of receptors for serotonin. Scientists blocked one and the mice acted obsessive compulsive. That was one kind of receptor. They are trying to figure out the other 299 and what they do in combination. Does this sound like we understand the brain? No, it doesn’t.

BUT there are papers about antibodies. Antibodies can mimic neurotransmitters, like dopamine, like serotonin, like adrenaline, like norepinephrine. Hmmmm. With multiple different types of receptors for each neurotransmitter, the antibodies could be specific for some receptors and not others. The antibodies could block the receptor, like the wrong key in a lock. Or the antibody could act like a key and turn the receptor on.

One barrier to understanding Long Haul Covid-19 and chronic fatigue as autoimmune diseases is that they do not cause a rise in the usual inflammatory markers. Those are the ESR (erythrocyte sedimentation rate) and CRP (um, I forget — oh, C-reactive protein). This does not mean that there is no inflammation or that these are not autoimmune disorders. This means we have not found a diagnostic marker. Rheumatoid arthritis can be “sero-positive”, with a positive rheumatoid factor marker. Or it can be “sero-negative”, with a negative rheumatoid factor lab, but it’s still rheumatoid arthritis.

What does this have to do with werewolves? Great question! I am thinking about the adaptive advantage of making antibodies to our own neurotransmitter receptors. How could that POSSIBLY be an advantage? What it means is that when someone is very very ill, or very very stressed, or both, at a certain point the immune system starts making crisis antibodies. These cause neurotransmitter and other symptoms. Brain fog, obsessive compulsive disorder, anxiety, muscle pain, fatigue and on down some very long lists. A recent study of fibromyalgia patients looked at 8 antibodies. One was an antibody to the GABA receptor. All of the patients had some of the antibodies, none of them had all of them, and they all had different patterns. So there is no marker and the neurotransmitter antibody could explain brain function changes.

Why werewolves? I am thinking of the old legends that are embedded in multiple countries and languages. Werewolves, demons, vampires, angels. My fourth pneumonia has left a problem: I can’t tolerate gluten any more. We did the antibody tests last week. I think they will be negative, because my gluten intolerance is relatively mild. I can have a tiny bit. People with bad celiac really can’t have any. I may have an antibody that is either a low level or one that has not been described yet. So with repeated infections, four pneumonias plus the exposure to my mother’s antibodies to tuberculosis in the womb, I now have what is looking like a permanent change in diet. This pneumonia started in March 2021, so it’s over a year. I had diverticulitis after that in August. I ate a piece of tempura two months later and thought, ooops, that has gluten! The next day I hurt in the same place as the diverticulitis and decided that I would stay well away from gluten for a while.

The adaptive advantage of having antibodies that change our diet or character or make us stronger or weaker would be to force us to change. To leave a community. To ask for help. To hide during a pandemic. To fight or be suspicious of everyone. Being a grumpy werewolf might save your life in a pandemic, as long as you don’t break any laws and eat someone. A friend likes the dark and hibernates and likes protein best: vampire or bear? I am not sure, maybe a vampire bear. Chronic fatigue seems to “save” or at least stop people from working 20 hours a day and driving themselves to illness. I am not saying that chronic fatigue is good or fun: but it might be adaptive. Brain fog and stiff muscles: zombies, anyone?

Can we do anything to prevent ourselves from getting these mysterious but probably autoimmune disorders? Yes. Lower stress. BUT WE ARE IN A PANDEMIC. Yes, but we can still lower stress. Here are three things to do:

  1. Do not work yourself into the ground, into illness, into the grave. Take breaks.
  2. BREATHE. A simple exercise to quiet the nervous system is to breathe in four seconds and out for seconds. You have to pay attention or count, unless you do it as part of facing a wall meditating, but it works. The veterans I worked with agreed that this works and they are not an easy crowd to please.
  3. LOLCATS or whatever makes you laugh. Sit under a tree. Throw rocks in the water at the beach. Play with a child’s toy with or without the child. (Remember to share.) Sit in a rocking chair and rock gently. Go for a walk, slowly, no ear buds. Listen to the birds. Watch the tops of trees move in the wind. This quiets the sympathetic fight or flight response and switches us to the relaxed parasympathetic. Do this every day at least once.

These all quiet the nervous system which in turn quiets the immune system.

But wait, some people are in a war zone or a disaster zone or an earthquake! Yes. Help them. Get them out. Send something locally or internationally. Give something to your local “buy nothing” group or Heifer or one of the groups in your town: Rotary, Soroptmists, Elks, your local Area Aging help group.

And that is Drkottaway’s Werewolf Theory, a work in progress, under study. I need NIH West. Contact me to start the fund drive.

____________

References:

Overview of fibromyalgia: https://www.verywellhealth.com/autoimmunity-neuroinflammation-in-fibromyalgia-5197944

Fibromyalgia as an autoimmune disorder: https://spondylitis.org/research-new/fibromyalgia-might-be-an-autoimmune-disorder-a-new-study-says/

They have given human antibodies from fibromyalgia patients to mice. The mice get fibromyalgia. https://www.nature.com/articles/s41584-021-00679-y

I took the photograph of Sol Duc today.

Practicing Conflict II

Practicing conflict II

In Practicing conflict, I wrote about practicing conflict by arguing different sides of a topic inside my head. I wrote that I don’t fear conflict and have learned to enjoy arguing with myself. I am a physician and physicians argue all the time.

What? No they don’t. Well, the doctor persona does not argue with the patient much. Some doctors give orders to patients, others try to negotiate, some try to convince. But behind the scenes, doctors are more like the Whacky Racer Car with the Cave Guys, running with their feet and hitting each other with clubs.

In residency in Family Practice at OHSU in Portland, Oregon, I start on General Surgery during internship. This is in the early 1990s and there was not much in the way of “disruptive physician” rules. I have to cover Trauma and Plastic Surgery and General Surgery at night on call. The resident is present but I get paged first for patients on the floor. I learn that I should go to all Trauma pages in the emergency room. If I know what is happening with the new Trauma patient, it’s a lot easier to handle the phone calls for more drugs and so forth. Also, the resident is less mean to me.

We attend the Trauma “Grand Rounds”. These are unreassuring to a new intern. A resident presents a trauma patient, giving the history in the accepted formal order. The Faculty Trauma Surgeons interrupt, disagree with management of the patient and yell. They yell at the resident and at each other. The upper level residents yell too, being well trained. The Trauma Surgeons do not agree with each other. They are inflammatory and rude. I am shocked initially: medicine is not a cookbook, is not simple and it appears that it is a controversial mess. It turns out that medicine IS a controversial mess.

There is not as much yelling on the next rotation. At that time Trauma Surgeons yelled more than any other set of doctors that I ran across. They yelled in the ER, at each other, at the staff, at the nurses, at the residents. The culture has changed, I suspect, but that’s how it was then.

I take Advanced Trauma Life Support as a third year resident. The Trauma Surgeons at OHSU helped write the course. They don’t agree with it. On some questions the teaching Surgeon says, “The answer to this question is (c), “ followed by muttering loudly, “though I totally don’t agree with that and I would do (b).” Another Trauma resident or surgeon then might start arguing with him, but they moved on pretty quickly, to teach the current agreed best practices in the book. Which change every few years. Great.

Years later (2009) I join the Mad as Hell Doctors, to go across the US talking about single payer. They are a group from Oregon. Physicians for a National Healthcare Program are a bit cautious with us the first year: we might be whackos. We have an RV with our logo and we have a small fleet of cars and what do you think we do in the cars? We argue. Or discuss. Or whatever you want to call it. We spend the driving dissecting issues and how to present things best and tearing apart the last presentation and rebuilding our ideas. The group does 36 presentations in 24 days. Each presentation takes an hour to set up, two hours to do and another hour to break down and debrief. We get more and more exhausted and cranky and um, well, argumentative, as the trip proceeds. Even though I think of the Whacky Racer Cave Guys running with their feet and bonking each other with clubs, this is the most wonderful group of doctors I have ever been with. A common goal that we all want to get to, discussing and disagreeing on strategy all the way! I feel closer to those physicians in a week then I feel to any of the physicians that I’ve worked with for the last 9 years in my small town. Conflict with a common goal.

Doctors are TRAINED to argue, even with themselves, to document every decision in the chart with reasons why they have reached that decision. And that they have thought about all of the reasons for say, a low potassium, thought of every possible cause and worked their way through testing. The testing always has two strands. One strand is rule out the things that could kill the person NOW, even if rare. The other strand is what is common? You have to think about both at the same time, always. And argue with yourself about which tests should be done, in what order, what is most important, how do you treat the person while awaiting results, and have I missed anything? And if we aren’t sure, we call another doctor, run it by them, wait for them to shoot holes in our logic or to say, no, I can’t think of anything else.

We can deal with conflict. We must deal with conflict. The world is too small not to deal with conflict, with disagreements, with different viewpoints and positions and ideas. If doctors can do it every single day at work, then everyone else can too. Trying to see all the positions and possible diagnoses saves lives in medicine. We need to extrapolate that to everything else. Try to see other positions, try to understand them, to respect them. We can and we must.

Blessings.

Here are the Whacky Racers:

And Madashell Doctors blog: http://madashelldoctors.com/category/uncategorized/page/3/

For the Ragtag Daily Prompt: discuss.

The photograph is from my clinic once we had stopped seeing patients and were selling everything. Mordechai was our clinic skeleton, made of plastic, from China. This was in January 2021.

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.

sorrow

Most of the time I am fine (I miss you I miss you I miss you).
I am busy during the day (You said I needed my own life).
What shut you down, I wonder (the family event).
You said I always try to learn daily (you say you refuse to change).
I have friends that love me and my kids (you say you do not love me).
I don’t think I know what love is (your actions felt like love sometimes).
Mostly I don’t think about you (sometimes it is very dark).
I hope that you are well (I wish I wanted you to be happy without me).
I am patching my heart again (for you I use elk sinew).
The deer remind me (life goes on, even when one doesn’t want it to).

A previous poem, when my sister died: The deer remind me.