Tag Archives: working theory

by

Working theory

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

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

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

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

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

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

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

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

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

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

Slow in, slow out.

Practice and heal.

_____________________

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

.

by

Long Covid healing crash

I have a friend with Long Covid. Eight months now.

My friend describes blood sugar crashes. She does not have diabetes and was tested before Covid. She has not been tested again.

“Sometimes I eat dinner, feel better, and then an hour later I feel terrible again. I have to eat again. And I ate extra in November and all that happened is I gained ten pounds. So eating extra doesn’t work.”

I suspect that as the clue: the feeling terrible an hour after she eats.

I call her the next day: “Spread the carbohydrates out. It could be that your body is producing too much insulin, storing the glucose and carbohydrates, and then your blood sugar gets too low. That can happen early in type 2 diabetes, but this could also be a healing mode.”

I write about carbohydrates to her. Anything that is not a fat or a protein is a carbohydrate. So all the grains and all the vegetables and fruits have carbohydrates, sugars. Glucose, fructose, maltose, lactose. Milk products contain lactose, but also fat and protein. Avocados are weird fruit and mostly fat. Sugar beets and peas are high sugar vegetables. A small apple is 15 grams of carbohydrate and a large one is 30. A tablespoon of sugar is also 15 grams of carbohydrate. A coke had 32 grams and a Starbuck’s mocha has over 60 grams. I quit drinking them when I looked that up. Empty calories.

A cup of kale has only 7 grams of carbohydrate for our bodies. The rest is fiber that we can’t break down into sugars. Fiber doesn’t raise our blood sugar. I wonder about cows with their four stomachs: they can break grass down into food and we can’t.

At any rate, my friend is going to try 3-4 meals a day with only 30-45 grams of carbohydrate and three snacks, at 15-30. This is an athlete and young. Most of my patients were closer to 70, so would need to do the lower end of those numbers.

I had crashes after my second and third pneumonias in 2012 and 2014. Strep A pneumonia and strep throat of the muscles. It hurt, like all over Strep A. After the 2014 one, it was six months before I could go back to work. When I did, it was exhausting. I was only seeing 3-5 patients a day at first and could barely do that. I ate one meal a day because food crashed me. As soon as I ate I went to sleep. My MD did not believe me. I saw a naturopath too. She claimed it was a food allergy and I said, “I don’t think so. I think it is a healing crash. I think my body is doing a ton of repair work and wants me asleep and not moving much.” Over the next six months it slowly improved. I went to 2 meals a day. Since then I really do not eat until I have been up for 4-6 hours. Expect tea with milk. And yes, I am getting a little nutrition through the milk, fat and protein and lactose.

I had one patient who said eating made her faint. I didn’t know what to do, but she was in the ICU, ate lunch and then fainted into her tray. The nurse was standing right there and immediately did a blood sugar and called me. Her blood sugar was in the low normal range. We transferred her to Virginia Mason in Seattle. She came back with a diagnosis that seemed pretty much like hand waving. Idiopathic (meaning the doctors dunno why) central (ok, brain) something syndrome, which meant yeah, she faints after she eats and doesn’t have diabetes and that is weird.

I am reading about similar neurological symptoms with Long Covid and also POTS: postural orthostatic tachycardia syndrome. This translates to heart rate goes faster than it should when the person stands up. Again, the cause is not clear and it’s not clear how to fix it.

Once an older patient went to the neurologist to discuss getting dizzy when she stood up. She returned grumpy. “He said that I just have to stand up slowly because I am 80. I don’t feel like I’m 80. I want to hop out of bed like I always have. But if I do, I nearly faint.” Her body was taking longer to equilibrate blood pressure after she stood up. The neurologist said no medicine: stand up slower. She grumpily complied.

I told my friend that maybe the pancrease is stressed and producing too much insulin. To store food. But another possibility is that her body wants her to lie down and rest so that it can do healing work after eating. This would make any young person impatient, but sometimes we have to listen to our bodies. I have learned THAT the hard way.

Blessings.

__________________

The photograph is of a Barbie ambulance/clinic. It does have a gurney, but the back opens up to be a fairly well appointed clinic, with lots of details, including a television in the waiting room. Today the doctor has wings. Fairy? Angel? We are not really sure.