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.


9 thoughts on “Working theory

  1. One of the research studies on AERD looked at AERD and mast cell activation syndrome. My own personal theory about MY long covid is that it happened because 1) I got Covid. 2) Seemingly, I recovered. 3) I got my flu shot and my Covid booster, a Pfizer (different from my others which were all Moderna) 4) A few days later I had Long Covid and that lasted for 6 months and change. I thought, “My immune system is mad as hell and not going to take it any more.”

    And now? Most symptoms have resolved, but I still don’t feel “right.” I can’t tell if the world has changed or my perspective on the world has changed or if I’m still fucked up. I have no idea. Or all of the above. Obviously the world DID change. Obviously I had to change, too. And now? I have no idea. I’m fighting depression and so far so good.

    Last night as I was drifting off to sleep (which I am now able to do again) I thought of the Black Death, of Boccaccio’s Decameron, of the young people fleeing Florence for the country hell bent on having as much pleasure as they could before the Black Death caught up to them (if they were unable to evade it). That’s kind of where I am now — 71 years old. A friend has just been diagnosed with a very bad brain tumor. Another has Endocrine Cancer. WTF? We don’t get out of here alive, so head to the country and carpe the diem.

    Here’s a scholarly paper on AERD and Mast Cell Activation.

    • drkottaway says:

      Many thanks and I hope you keep getting better. I did have a flare after the last vaccine and my doc has agreed to an antibody level before another. If my level is still really high, we will hold off.

    • drkottaway says:

      Maybe mother earth is just pissed and has all the small cells up in arms.

      • It wouldn’t surprise me. We are not a thing apart from her at all. We are part of her. Sometimes I wonder what she’s thinking. We just go on our way because, it seems, we don’t know any better.

  2. I used to use a mast cell inhibitor for asthma. It seemed like the right approach – an inhaled medication targeting the mast cells in the lung. It worked and I no longer needed albuterol. Then long-term studies came out showing minimal efficacy and the drug was no longer available in the US. Statistics being what they are, not enough people showed benefit. I guess I was an outlier. I used it every morning in the winter before riding to work and again in the afternoon before riding home. I stopped reacting when I started the cromolyn sodium. I could breathe and exercise in cold weather! When I used up my supply, I found that I no longer needed it. I got better! It wasn’t supposed to be a cure, just a treatment, but something changed over time. Interestingly, I see that it is now available in the US again, though it is not covered by my insurance.

    • drkottaway says:

      Interesting! Yes, my lungs finally seem better, or at least back to the 2014 baseline. Inhalers do not work for me, my lungs could care less about albuterol. I get more benefit in my lungs from caffeine.

    • drkottaway says:

      It is going to be terribly interesting to watch!

Comments are closed.