Long Covid fatigue and overdoing

I’ve been reading journal articles about Long Covid. The three primary symptoms are fatigue, shortness of breath and brain symptoms. Mostly brain fog. Then there is a long long list of other symptoms.

For the fatigue, the journals are recommended graded increase in activity “without triggering a fatigue crash”.

Now, that is all well and good, except it’s a moving target. The amount of activity one can do is NOT static.

I have something that caused CFS-ME. My fast twitch muscles came back on line sometime between Christmas and New Years. GREAT! Then I was helping a sick friend until January ninth. I flew home and then there is all the unpacking and bills and catching up and sweeping up catfur dust elephants. Finally I got to exercise. I walked a couple miles on the beach one day and then around town with a friend the next.

Which crashed me. The third day I spent lying on the couch. My muscles basically were ALL hurting and saying, “We hate you.”

The fast twitch are back on line but they are weak as newborn kittens. For the first two days I felt strong and normal. The third day I felt like a steamroller had gone over me.

So did I do the wrong thing? Well, no. I won’t know what I can and can’t do it unless I do it, right? After four rounds (or more) of pneumonia with muscle weirdness, I can tell when it’s improving. Then I have to rebuild the working muscles. Also my slow twitch posture muscles are frankly pissed off and have been doing all the work and are not very interested in working with the fast twitch when they first come on line. “Where have YOU been? We’ve been doing YOUR work AND OURS.” I have to learn to walk again.

I was doing well with pulmonary rehab in the fall, building up on the treadmill twice a week, until I got my flu shot and then my Covid booster. Well, they are supposed to raise antibodies. Unfortunately they raised the ones that make my fast twitch muscles not work. Muscle blocker antibodies. I am just glad that my slow twitch work, because I sympathize hugely with the people who end up lying in bed. It’s still inconvenient, difficult to explain and annoying.

At any rate, gentle graded increase in activity is all very well as advice. But do you control everything that happens in your life? I don’t. Someone gets sick, the mail goes awry, a billing company changed their address and I didn’t get the memo. It all takes energy. Some days I am going to overdo, especially when I feel better. And it rather sucks to lie around the next day, but it is ok.

Over the last week I had a friend up from Portland. We walked three days running. On the third day we walked paths from my house to the lighthouse and back. About 5-6 miles. I was not quite limping when I got home, but I knew I could rest the next day. My muscles got HUNGRY and are continuing to improve.

So when your doctor tells you “graded activity to avoid fatigue crashes”, remember that it is not wholly controllable because life is not wholly controllable. Some days you will do great and others, well, hmmm. That was too much.

Blessings.

https://www.aafp.org/pubs/afp/issues/2022/1100/long-covid.html

https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html

PANS/PANDAS and diet

I have been thinking about PANS and diet.

When I am sick with pneumonia, I have to keep my carbohydrate intake as low as possible, or I get much much worse. I am attributing this to the lysoganglioside antibody. I have been puzzling about the lysogangilosides because a conference last year says that in some children with PANS/PANDAS, the antibodies cross the blood brain barrier and then macrophages appear to be killing ganglion brain cells. They described a truly awful case. I completely understand children refusing to eat or only eating one or two things when they are having a flare. And everyone may have different food issues because we all make different antibodies. This makes it darned tricky to sort out.

But back to ganglion cells. These are the “nerve” cells. They make up the brain but there are also nerve cells all over the body. And more recently we have started calling the gut, the digestive system, as second “brain”. This is because the gut turns out to have tons of ganglion cells.

So, my lysoganglioside antibodies do not appear to attack my brain. But something attacks my gut. It could be any or all of the antibodies, actually. Ganglion cells in the gut would have receptors for dopamine, the gut has smooth muscle that is powered by tubulin and my understanding of lysogangliosides is that they clean up dead or damaged ganglion cells and should not bother healthy ones. Studies of patients with lyme disease are showing the same four antibodies with a rising baseline for people who have more infections, so my guess is that my baseline has risen enough that I do not tolerate gluten. I may try it again, because my good news is that my muscles feel normal again. No more tubulin blocking antibodies, so I have fast twitch muscles again. They are weak but functional. I am starting to exercise them. Hoorah! If I am super lucky, whichever antibody screws up gluten for me has also dropped, but it may not have. The antibodies do not all do the same thing at the same time. This flare started for me when I had my influenza vaccine and then 5 days later, my fourth Covid-19 vaccine. The shots SHOULD get an antibody response but it was annoying to have the muscle dysfunction again. I managed to avoid getting pneumonia, so the response is shortened, about two months. I had very little of the dopamine 1 and 2 effects, so it was a relatively mild effect. The annoying bit was that I was improving in exercise at pulmonary rehab and the vaccines knocked me back down.

When I have pneumonia, eating carbohydrates makes my breathing worse. That’s weird. Well, not really. This fourth go around I realized that I could mitigate the effect of rising blood sugar as I improved by drinking bicarb with each meal. Sodium bicarbonate, baking soda in water. Why did that help?

Bicarbonate is a base. If it helped the symptoms, then it was balancing out an acid. Rising blood sugar was making me acidotic. When we are acidotic, our bodies will try to increase bicarbonate by speeding our breathing. If I have pneumonia and am hypoxic anyhow, then additional pressure on breathing is definitely not a good thing. So adding a glass of water with a teaspoon of baking soda reduced the acidosis. Then food did not affect my breathing.

Would this help all children with a pandas flare? Again, everyone has different antibodies, so the answer is probably NO. I think it is enormously important to listen to children with a PANDAS/PANS flare and give them an assortment of simple foods to choose from. No pressure for a balanced diet at the height of a flare, because some food or food group may make them feel terribly ill and actually may affect their acid/base balance and MAKE them more ill. I would offer something mostly fat: avocado or bacon or a high fat salami or cheese. Some steamed or raw vegetables, ranging from the high carbohydrate to low. Peas are high, kale is low. No sauces or dressing. Some protein sources, chicken breast or meat or beans. A grain or grain source. Offer fruit but do not push. Let the child figure out what they can eat and roll with it. Try to find more things in that food group. Remember that the main food groups are fats, proteins and carbohydrates. There are a bunch of different carbohydrates, which are sugars. Glucose, fructose (in fruit and corn syrup), lactose (in dairy), maltose, dextrose and others. I would avoid junk food and anything prepared. When I am sick I do fine with lactose, but all of the other carbohydrates make me feel very very ill and mess up my breathing. This is individual and will differ from person to person. If eating makes you feel very very ill, it’s easy to understand why some children stop eating. The obsessive compulsive traits are understandable too: if you suddenly don’t tolerate the foods you love and you do not understand what is happening (and your adults don’t either), you might try to behave in ways to bring back the good old days. Do everything the one right way and maybe things will return to normal. It’s a terrifying illness for children and for parents, but I have hope that my experience will help other people.

Blessings.

The AntiDating Patch II

Gosh, again? Once again I am giving up on dating, because, well…. I just cannot even IMAGINE beginning to share my past life. Heh. I suppose I could do one of those “We never talk about the past” relationships, but BLEAGH. Sorry, boring.

So, I quit. As I wrote in The AntiDating Patch, people are contrary beasts and nothing makes them more interested then being engaged/and/or/quitting dating. How do I get around this? Wearing the PATCH(Tm) is not enough. (I chose itsy bitsy country of origin of my choice, just FYI, not the boxers and ick, not the speedo).

Quitting won’t work. I will be hounded. My microbiome will start howling and send out pheromones to the other microbiomes and people will gather round. No! I say, No!

Better to date. Hmmm. I think I will date the birds in my yard. The male deer are a bit spiky for my taste, a little scary to get close to. I like the raccoons, they are VERY good at growling and protect their young. The coyotes are shy but I’ve seen them within a block and by my former clinic. Also one on three legs by the hospital. I wonder if he was considering the ER? I find great blue herons fascinating and wish that I could fly and land in trees. I could date a tree, right? Be anything you want to be? At one point I was so fed up with people that I decided to be a tree.

There. I will peel the AntiDating Patch off in a week and date the local flora and fauna. A week of the patch will reinforce my resolve and then I can go moon at trees, or a blue heron, or a coyote.

Phew, problem solved and plan laid. I won’t have to explain my life at all, at least not in English. I have had a blue heron circle back to land in a tree when I was trying to talk blue heron. The heron looked pretty fierce, I am afraid that what I am saying is probably an insult. It’s easy to pick up the nasty slang in another language. Maybe they will teach me if they sense my deep and positive intentions. I hope so, don’t you?

Damaged or blessed?

Am I damaged or blessed to have PANS?

Damaged because it has put me out six times? Four times with pneumonia, once with preterm labor, and once with mononucleosis. Plus getting really sick with strep A as a kid, an earache that had me crying with pain at age 8, coughs in medical school that would hang on for six weeks and not respond to albuterol. Only rest would help. A year this time and not better yet, 6 months out last time and then seven years working half time. In 2012 out two months. 2005 out two months. Preterm labor out 6 months. Mononucleosis: dropped ten pounds and did not feel better or gain it back for two months. How much income have I lost? A lot. Am I damaged?

Blessed because I am not dead? My sister dies of cancer at 49, my mother at 61, my mother’s father at 79. All three married people who had “anger issues”. And all three got cancer.

I think that they had anger that they could not reach.

I do not think that ALL cancer is buried, unexamined, unresolved anger. But I am starting to see a medical pathway that could lead from buried anger or other buried emotions to illness and death. The buried emotions are stressful. The body tries to hold the stress. The body works very hard at it. The conscious mind is not aware. This is the realm of the unconscious. The stress, the unresolved trauma, anger, grief, whatever, triggers antibodies. Heightened sympathetic nervous system, higher adrenaline and higher cortisol. Cortisol is the steroid system. Steroids help to lower inflammation but they also impair the immune system. The immune system is chronically suppressed, trashed, and then it can’t do its job. Anti lysoganglioside antibodies form and block the lysogangliosides. The lysogangliosides are supposed to clean house in the brain. They can’t clean house, they are paralyzed. And the brain forms plaques: dementia. Or some other antibody forms that blocks cancer removing cells in the immune system: and there it is. Cancer.

We all have cancer all the time, that our immune system is removing. That’s a little weird to think about, isn’t it? So we need healthy immune systems, we need the parasympathetic nervous system, we need to relax, we need to play, we need to laugh ourselves silly at stupid cat videos, we need to make ridiculous memes go viral on TikTok, we need to use the power of the internet to drive the cost of a share up just to fuck with the rich Bosses, because we are tired of them fucking us over.

So, says my sig other, or he who used to be. You need to avoid stress, in order to not get sick again.

Well. I stopped eating on Saturday a week ago and ate minimal calories and mostly high protein and fat. Because I was pretty sure he was breaking up with me. He felt the same about me. I was terrified when we walked two days ago, so I wore the dragon shirt. Most of all I wanted not to yell.

Neither of us yelled. We both listened. He doesn’t know why he has shut me out of three areas of his life, and the three most important ones. It isn’t me. He is aware that it is him. He was not really aware that he was doing it. I am trained to hide emotions, from childhood in my crazy family and then physicians are trained as well. I cry with patients sometimes, when we find that their cancer is back, or other things like that. The child dying. But I can hold a calm expression even when a person tells me that they are hearing voices telling them to kill themselves and would I please take out the antenna in their tooth. So I sat hard on my emotions for ten months. Until I thought the right time had come.

Even then, I did my best and screwed up. We’d opened up one thing and I thought the rest would be ok. I sent an email. Whoa, boy, it was NOT ok, and I got yelled at. I burst into tears. I didn’t feel like yelling at all, I was crushed. But it is ok, it had to come out. The Year of the Ox is almost over. I hope the Year of the Tiger is less horrible. But at the same time, I would not trade the time with him for anything.

Damaged or blessed? Cursed or blessed?

Both, I think. All of us.

I am submitting this to today’s Ragtag Daily Prompt, though it is not a hawk.

Up a tree

I love Great Blue Herons. We have a lot. I love them best in trees, because they still look strange to me in trees. They will perch right on the top of our tall Pacific Northwest trees and look like peculiar Christmas tree toppers. Alien angels. Their bones are lighter than ours, so they can stand on a limb that would not hold me or you.

The Introverted Thinker in New York

The Introverted Thinker is eight. Her mother takes her out of school for a week to go to New York City.

They leave her sister and her father behind.

Her mother complains about the school paperwork. “Never let school get in the way of your children’s education,” she says. “That’s what my father says.”

The IT is not sure what all this means. But she is excited.

They go on an airplane. She gets to sit by the window. She can see the ground and it is squares like a quilt with hills. It is so beautiful! She is amazed, magic!

In New York City they go to the house of an old friend of her mother’s. The old friend is old and wears dresses to the ground and a lot of jewelry. The house is dark and there are many things in it. The IT is told that the things are antiques and she must not touch anything. She walks around carefully in the dark places, looking at all of the strange things while her mother talks to the old friend. They talk about the past and people that she does not know.

Her mother takes her to museums on some days. Some are art museums. The IT is already used to art museums because her mother is an artist. The museum is like an art gallery only much bigger and the ceilings are very high. A lot of the art is very big too.

One museum is different. Natural History, says her mother. There are dinosaur bones. The IT can’t touch them either but they are wonderful. Huge animals from the past that are not here any more! She loves it.

They fly home. First she has to thank the old friend with the house like a museum, only darker. Then they go to the plane. This time there are some clouds so the IT can’t see as much, but she still gets to see the quilt of the land.

She decides that she likes museums and she likes natural history. Especially dinosaurs.