Tag Archives: breathe

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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.

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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.

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Immunomodulation

I wrote this for a group of physicians, so it’s heavy on the science. BUT I think everyone can benefit from understanding the difference between the sympathetic nervous system and the parasympathetic. Also, we can survive without the sympathetic but not without the parasympathetic.

My essay yesterday was about antibodies to tubulin, what tubulin is and how antibodies work. This doesn’t seem very useful if the only thing we can do about the antibodies is remove them by theraputic plasma exchange or give anti-inflammatories. However, there are other approaches. As a rural Family Physician, I have an ever expanding toolbox that I learn from multiple specialties and patients. Mothers of children with PANS/PANDAS may already have figured out many of these techniques.

Our bodies have two basic modes for the nervous system. The well known mode is the sympathetic nervous system. This is the amped up fight or flight system. When we have a very activated sympathetic nervous system, we make less thyroid hormone and less sex hormones and switch production to more cortisol and adrenaline. This helped me to understand adult patients who say they are constantly tired, don’t want sex, they keep getting sick and they also have trouble sleeping. Borderline low thyroid, low sex hormones, elevated cortisol and elevated adrenaline, though it may be at the upper range of normal. The sympathetic nervous system readies muscles for flight or flight, turns digestion to low, reduces secretions everywhere (eyes, salivary glands, stomach, gall bladder, urine, etc) and tightens fascia around the muscles. Blood pressure and heart rate rise. High cortisol over time is not good for the immune system.

The other mode is the parasympathetic nervous system. This is the relaxed system. Digestion and urination works well, muscles relax, cortisol and adrenaline come down, thyroid and sex hormones are manufactured. Blood pressure is lower and heart rate is lower.

The first technique I use to change from sympathetic to parasympathetic is breathing. Swedish hospital is teaching the anxious patients, chronic pain patients and veterans slow breathing. Five seconds in and five seconds out. They recommend building up to 20 minutes over time. If done for 20 minutes, they said that almost everyone calms from sympathetic to parasympathetic. Some people endorse square breathing: in, hold, out, hold, in. I did daily Zen Buddhist meditation facing a wall for 40 minutes during college. This also works and some children might find it an enjoyable challenge. I find Zen meditation easier in a group than alone. I asked a 30 year veteran of the Special Forces to try the 5 in and 5 out breathing because he would find his muscles tight just watching television. He was reluctant, but he returned and said that he is surprised that it works. He also said that he is not used to the relaxed feeling and it feels weird.

Other ways of activating the parasympathetic nervous system for adults include walking, rocking, laughing, magazines seem to love hot baths, anything that relaxes. Playgrounds include places to climb, spin, swing and hang upside down, for children to get a break and play. Again, different people find different things relaxing. During my second strep A pneumonia, an antibody titer came back at 600 with normal being 200 and below. I have read that children can have titers of 2000. I could barely function with a titrer of 600 (off work, obviously) and thought that if my titer was 2000 I would hide under my bed and not come out. I would like input from child psychiatry on downregulating the sympathetic nervous system to parasympathetic in children, but my guess would be that a safe place is very important. Where is that safe place for each child and when they are not having a flare, can they practice going to it in their minds?

Another helpful parasympathetic activity is games or puzzles. My father died leaving an out of date will and a difficult estate. For the year that I worked on it, I did a suduko every day. I could not solve the estate quickly but I could solve the number puzzle every day and that gave me a small window of feeling good and relaxation. Board games or puzzles could work as well. I am less certain about computer games: my understanding is that the visual cortex is activated along with other parts of the brain. This seems more sympathetic than parasympathetic but I could be wrong. The familiarity of a video game may feel very safe and more predictable than the illness. Old movies and reading beloved books is parasympathetic for me. Oddly, sex is parasympathetic in women but both sympathetic and parasympathetic in men. Music can relax many people, and repeating the same music or album over and over. Comics and silly cat videos are parasympathetic.

As a physician, I often acted in a high sympathetic nervous system. A friend of my son’s said, “Your mother is crazy.” My son replied, “No, she’s just intense. About EVERYTHING.” I had to learn not to be intense about everything. We can model relaxation and parasympathetic activity and slowing down for our children, but we may have to set more boundaries at work.

Here is the best write up I have found on the internet about the parasympathetic nervous system: http://www.wisebrain.org/ParasympatheticNS.pdf. They have a great explanation as well as exercises to calm to parasympathetic.

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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.

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Hammock and filter

I am preparing the cats to travel a bit. I acquired this foldable framed container. The cats are getting used to it. Elwha has decided it makes a nice hammock platform from which to watch me in the kitchen.

We still have smoke from the fires. Seattle is worse than here. The cats are not out for their daily walks until this clears. I am getting lots of knitting and continuing medical education done.

Yesterday I built a Corsi-Rosenthal cube. I bought a box fan and four MERV-13 filters and duct tape. Tape it all into a cube with the filters facing in and the fan facing out and voila! An air filter for my house. Even though I’ve kept the house closed up, the air has been bad for a week. My house is from 1930 and not tight so there is seepage.

Here are the instructions for the cube: https://encycla.com/Corsi-Rosenthal_Cube.

For the Ragtag Daily Prompt: platform.

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Long Covid and fatigue

Sometimes medical articles are SO IRRITATING! Like this:

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

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

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

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

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

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

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

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

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

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

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

Blessings and peace you.

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

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Red sun

This is a sunrise, not a sunset, two days ago on Marrowstone Island. The air quality was deteriorating and I am mostly staying indoors today. We are at high particulate matter and high fine particulate matter, coming from the fires to the east. The recommendation is to mask outside, keep windows closed, use an air filter and mask outside. Also to not exercise heavily outside.

It looks sunny out now, but the air looks wrong. Dirty. My lungs don’t like it at all, not surprisingly. I hope people are taking care of themselves. Stay in, take it easy, mask. Our air is supposed to improve tomorrow.

Blessings and peace you.

Real time air quality map here.

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On meditation and breathing

In college at the University of Wisconsin, I dated a gentleman who was following the Zen Buddhist tradition.

He meditated daily, for forty minutes, facing a wall.

I was quite intrigued. I did not think I could do that. I am a fidgety person and can’t sit still. I promptly tried it.

Forty minutes is a long time facing a wall at age 19.

I would fall asleep. I would start tilting to one side or the other on my zafu and jerk back up. I knew I was not supposed to follow thoughts, but I couldn’t not think. It is more subtle than that: I slowly figured out that I can let the thoughts pop up from the toaster brain, but try not to follow them. Wave at the thought. Let it go.

One day there was a small hole in the wall when I faced it. A tiny spider came out and went back in. I was very happy about the spider.

The next day the spider came out and waved one leg at me. Then it went back in the hole. The end of the 40 minutes is signaled by a chime. I got suspicious afterwards and went back to the wall. Not only was there no spider, but there was no hole, either. I did not see any more holes or spiders.

I meditated regularly daily for two years. After that I would return to practice intermittently. Meditation trained my breathing: my breathing slows way down during meditation.

I use that breathing when I have pneumonia. In the worst episode, I was in the hospital and disbelieved. I slowed my breath way way down to calm myself and so that I could think. Eight counts in, eight counts out. Then ten, then twelve. I needed to focus and figure out what was causing sepsis symptoms. And I did figure it out. The provider sent me home that morning, septic and 6 liters behind on fluid, but I was able to survive.

Now the pain clinics are teaching slow breathing. Five seconds in and five seconds out. Start with a few minutes and work up to twenty minutes. “Almost everyone goes from high sympathetic nervous system fight or flight state to the parasympathetic relaxed nervous system state.” I think we need more of that, don’t you? This is being taught for anxiety, for chronic pain, for fear and depression. I asked a veteran to try it. His response: “I hate to admit it but it works.” Also, “I’m not used to being relaxed. It feels weird.” I laughed and said, “I think it might be good if you get used to it.” He reluctantly agreed and continued the practice.

Peace you, peace me.