Tag Archives: chronic fatigue

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Make space for the difficult feelings

I am watching a four part video from the UK about illness and trauma.

The first part is about how trauma memories are stored differently from regular memories. Regular memories are stored in files, like stories in a book or a library.

Trauma memories are stored in the amygdala and often are disjointed and broken up and have all of the sensory input from the worst parts, including the emotions.

The therapist is talking about healing: that our tendency is to turn away from the trauma, smooth it over and try to ignore it.

However, the amygdala will not allow this. It will keep bringing the trauma up. And that is actually its’ job, to try to warn and protect us from danger!

The therapist counsels finding a safe time and place and safe person (if you have one) and then making space for the trauma to come back up. One approach is to write out the story, going through that most traumatic part, but not stopping there. What happened next? Writing the story and then putting it aside. Writing it again the next day and doing this for four days. As the story is rewritten and has an ending, even if it is not a happy ending, the story is eventually moved from the amygdala to the regular files. People can and do heal. They may need a lot of time and help, but they can heal.

I am not saying that four days of writing stories is enough. That is one approach, but nothing works for everyone and people need different sorts of help. There are all sorts of paths to healing.

In my Family Practice clinic I would see people in distress. With some gentle prompting and offering space, they would tell me about trauma and things happening in their personal life or work life. Things that were feeling so overwhelming that they could not tell their families or friends and they just could not seem to process the feelings about it. I would keep asking what was happening and give them the space to tell the story. Many times when they reached the present they would stop. There would be a silence. Then I would say, “It seems perfectly reasonable that you feel terrible, frightened, horrified, grieved, whatever they were feeling, with that going on.” And there was often a moment where the person looked inwards, at the arc of the story, and they too felt that their feelings were reasonable.

I would offer a referral to a counselor. “Or you can come back. Do you want to come back and talk about it if you need to?”

Sometimes they would take the referral. Sometimes they would schedule to come back. But nearly half the time they would say, “Let me wait and see. I think I am ok. I will call if I need to. Let me see what happens.”

When a person goes through trauma, many people cut them off. They don’t want to hear about it. They say let it go. They may avoid you. You will find out who your true friends are, who can stand by you when you are suffering. I have trouble when someone tries to show up in my life and wants to just pretend that nothing happened. “Let’s just start from now and go forward.” A family member said that to me recently. Um, no. You do not get to pretend nothing happened or say, “I wanted to stay out of it.” and now show back up. No. No. You are not my friend and will not be. And I am completely unwilling to trade silence about my trauma for your false friendship.

Yet rather than anger, I feel grief and pity. Because this family member can’t process his own trauma and therefore can’t be present for mine. Stunted growth.

People can heal but they need help and they need to choose to do the work of healing.

The four videos are here: https://www.panspandasuk.org/trauma.

This song is a darkly funny illustration: she may be trying to process past trauma, but the narrator doesn’t want anything to do with it. And he may not have the capacity to handle it. He may have his own issues that he has not dealt with. And maybe they both need professionals.

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Nerve ablation

Would I do this? A nerve ablation for chronic pain?

https://healthy.kaiserpermanente.org/health-wellness/health-encyclopedia/he.nerve-ablation-for-chronic-pain.zx3505

Two people mentioned nerve ablation to me this week: one in the back and one in the knee. Would I do this?

Holy denervation, Batman. I’d like to think that I wouldn’t, but pain does suck.

The problem is that pain is information, even chronic pain. The current thinking in medicine is that chronic pain is some sort of glitch in the wiring or the brain where something keeps hurting even if we can’t see much of an injury.

Like grief or a broken heart or the death of a loved one.

Those pains can soften, but do they entirely go away? The death of loved ones doesn’t. It’s been a decade since my sister died of cancer and I still think of things that would make her howl with laughter. She understood me in a way that no one in the world does: ok, except for my children. My children are adults now and out in the world and observing other parenting and non-parenting and disastrous young adult choices. My son now has a high school classmate dead of opioid overdose. A topic for another essay.

Back to chronic pain. Medicine in the United States does patients a terrible disservice by talking about the spinal discs all the time. 99 times out of 100, the pain is NOT a disc. The back is very complicated, with 6 layers of muscles, and some of those muscles are only an inch long. They all have to work together in a fluid way. Often, we forget this. Our muscles try to obey us and we lock them into a terrible position and they try and try and try: and then tear and hurt.

Lock them? Yes. We have three main types of muscle: fast twitch fatigable, fast twitch non-fatigable and slow twitch. Slow twitch don’t get much attention in the United States MORE AND FASTER dysfunctional ADHD culture. Slow twitch muscles are the posture muscles. If you lock them in one position, they will stay there. Even when you get up from the computer or desk or bent over picking strawberries.

When the muscles lock, remember that they are all attached to bones. Every muscle attaches to at least two sites. Picture a muscle that crosses the knee joint locking into a shortened position. Now, do you think the knee moves normally? NO, it doesn’t. And if the muscle is tight and locked, the knee joint can be damaged by not being able to move freely.

Now, think about your back. You have seven cervical vertebrae, 12 thoracic and five lumbar. So 24 separate bones, and then other bones, like ribs, attached by tendons and ligaments and muscles. You pull a muscle in your lower back playing pickleball. It hurts. When the muscle is injured, it tightens up to protect itself. The surrounding muscles can tighten as well, and then that area doesn’t move right. The other muscles and joints have to attempt to take up the slack! They can’t move normally either! All too often I ask what people did when their back started hurting and all they did was take something to mask the pain and keep going.

Pretty dysfunctional.

So what do I want you to do with a new injury? RICE. Rest, ice, compression, elevation. Rest the muscle. It’s hurt. Ice for ten minute intervals in the first 48 hours, not heat. Heat increases bleeding and swelling. Muscles can bleed if they are torn. You have had a bruise sometime in your life, right? You won’t see a deep muscle bruise, and personally I have trouble looking at my own back. You may add heat after the first 48 hours. Usually the peak of swelling and bleeding is by 48 hours. Compression: if it is an ankle or an elbow, an ace wrap holds the joint still and reduces swelling. You can press ice on your back, or lie on an ice pack. Go ahead and shower but not super hot at first. Elevation for arms and legs: gravity helps reduce swelling and pain.

What if it’s been hurting for a year? Your blog was too late!

Check your posture first. If you have been avoiding moving a part of your body, you need help. If your posture is terrible, you really need help. Take breaks at the computer! Get up and walk! And see your primary care person. Physical therapy, occupational therapy, massage therapy. Pay attention to what makes the pain worse and what makes it better. Alcohol or pot might make if hurt less, but that’s not fixing the problem and could make it worse. Muscle relaxants are not great either. The muscle tightened up to keep from tearing, remember? And scar tissue can form in muscle. You need to work with someone to gently break down that scar tissue without tearing the muscle again. So muscle memory is for injuries too. If a muscle has been traumatized, it has scarring and it remembers. It may tear more easily and will tighten up more easily. Listen to your muscles. They do not just tighten with trauma, they also tighten with stress and are more at risk for injury. Learn how to reduce your stress, go into a parasympathetic relaxed mode, and help your muscles.

For long term chronic pain, I think of present injury, old injury and then brain and emotional injury. We are often afraid of injury, that we will be hurt, that it will hurt forever, that we will be disabled and be alone and starve. Our culture for the most part celebrates the young and strong and the survivors. I don’t think we have a “chronic pain day” where the whole country thanks the people who have chronic pain and work anyhow, to take care of each other and their families. Maybe we should have that. The emotional part of chronic pain must be addressed too.

I would be very cautious about having a nerve cut, or ablated. The exception for me is the abnormal heart pathways that cause arrythmias. Yes, I think ablating them is a good treatment, but we still try other things first. There can be complications of any surgery.

___________________

The photograph is me and my ex dancing at our wedding in 1989. Swing dancing is a delight and you have to not injure your partner or yourself! We noticed that even one drink would affect our dancing and our favorite place to dance was at Cabin John Park, which had no alcohol at all. Posture is important. I think the photographer on this one was my ex’s uncle but we also had a dance friend who took wonderful photographs.

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Tubulin and antibodies

This is very science dense because I wrote it for a group of physicians. I keep thinking that physicians are scientists and full of insatiable curiosity but my own experience with to date 25 specialists since 2012 would say that many are not curious at all. This continues to surprise and sadden me.

______________________________

All science starts with theories. Mothers of children with PANS/PANDAS reactions had to fight to get the medical community to believe that their children had changed after an infection and that symptoms of Obsessive Compulsive disorder and all the other symptoms were new and unexpected and severe. This is a discussion of tubulin and how antibodies work, theorizing based on my own adult experience of PANS. I was diagnosed by a psychiatrist in 2012. No specialist since has agreed yet no specialist has come up with an “overaching diagnosis” to explain recurrent pneumonia with multiple other confusing symptoms.

The current guidelines for treating PANS/PANDAS are here: https://www.liebertpub.com/doi/full/10.1089/cap.2016.0148. This section discusses four antibodies that are a common thread in PANS/PANDAS patients. Antibodies to dopamine 1 receptors, dopamine 2 receptors, tubulin and lysoganglioside.

Per wikipedia “Tubulin in molecular biology can refer either to the tubulin protein superfamily of globular proteins, or one of the member proteins of that superfamily.” Tubulin is essential in cell division and also makes up the proteins that allow movement of cilia, flagella and muscles in the human body. There are six members of the tubulin superfamily, so there are multiple kinds.

Antibodies are complicated. Each person makes different antibodies, and the antibodies can attach to a different part of a protein. For example, there is more than one vaccine for the Covid-19 virus, attaching to different parts of the virus and alerting the body to the presence of an infection. Viruses are too small to see yet have multiple surface sites that can be targets for a vaccine. When a cell or a virus is coated with antibodies, other immune cells get the signal to attack and kill cells. At times the body makes antibodies that attach to healthy cells, and this can cause autoimmune disease.

Antibodies also can act like a key. They can block a receptor or “turn it on”. Blockade is called an antagonist when a pharmaceutical blocks a receptor and “turning it on” is called an agonist. As an example of how an agonist and antagonist work, take the pharmaceutical buprenorphine. Buprenorphine is a dual agonist/antagonist drug. In low doses it works as an agonist at opioid receptors. At high doses it is an antagonist and blocks the receptors. It also has strong receptor affinity. This means that it will replace almost all other opioids at the receptor: oxycodone, hydrocodone, morphine, heroin. The blockage and ceiling dose make it an excellent choice for opioid overuse. Higher doses do not give a high nor cause overdose and when a person is on buprenorphine, other opioids do not displace the buprenorphine and give no effect.

Similarly, a tubulin antibody could be an agonist or an antagonist or both. As an agonist, it would block function. My version of PANS comes with a weird version of chronic fatigue. When I am affected, my fast twitch muscles do not work right and I instantly get short of breath and tachycardic. I suspect that my lung cilia are also affected, because that would explain the recurrent pneumonias. My slow twitch muscles are fine. With this fourth round of pneumonia I needed oxygen for over a year, but with oxygen my slow twitch muscles do fine. We have fast twitch fatiguable muscles, fast twitch non-fatiguable, and slow twitch. With six families of tubulin and multiple subfamilies and every person making different antibodies, it is no wonder that each person’s symptoms are highly variable.

Currently the testing for the four antibodies is experimental. It is not used for diagnosis. When I had pneumonia in 2012 and 2014, the antibodies had not yet been described. There is now a laboratory in New York State that will test for them but insurance will not cover the test, it costs $1000 as of last year, and it is not definitive nor useful yet anyhow.

There are studies going on of antibodies in ME-CFS, fibromyalgia, chronic lyme disease, PANS/PANDAS and Long Covid. Recently antibodies from humans with fibromyalgia were injected into mice. The antibodies caused fibromyalgia symptoms in the mice: https://www.sciencedaily.com/releases/2021/07/210701120703.htm. One of the barriers to diagnosis and treatment of fibromyalgia is that science has not found a marker in common that we can test for. Even the two inflammatory markers that we use (C-reactive protein and Erythrocyte Sedimentaion rate) are negative in fibromyalgia. This doesn’t mean that people do not have pain or that it is not real, it just means we have not found the markers. It may be that the markers are diverse antibodies and there is not a single marker.

The research is fascinating and gives me hope. It boggles the mind, doesn’t it?

For the Ragtag Daily Prompt boggle.

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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!

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Conspiracy is easier than vulnerability and grief

“Our culture faces a flood of conspiracism” says the Atlantic Monthly.

My great Uncle forwards an article that says we are tracking along stages as we did to WWII.

I write back. No, I say, we are tracking towards WWI.

Because of Covid-19.

The problem with the pandemic is vulnerability and grief. It is difficult to be mature enough to accept vulnerability and grief. It is easier to find someone to blame and go after them. We can’t burn a virus, we can’t hang it in effigy, we can’t take it to court and give it the death penalty. Many people are terrified and do not want to feel vulnerable and do not want to grieve. So they fall into conspiracies: it is safer to believe that the pandemic is a lie, that alien lizards have taken over the US Government, that it is the fault of a country making it on purpose, or a race, or a religion. It is easier to believe that nanocomputers are being injected with the vaccine than to think about the number of dead. It is easier not to think about the number of dead, the terrifying randomness, to believe that this only affects people with preexisting conditions, or people who God wants to smite, or people the lizard aliens hate. Or that the whole thing is a lie.

We are mimicing the late 19 teens and early 1920s very well. A world pandemic. We have a war, that is not a world war. This time we have bombs capable of destroying current life on earth. We’d be left with tardigrades and those bacteria who live in the deep trenches in boiling water where the earth’s crust is thin. At least one of my friends thinks this might be a good thing.

We have just reached 8 billion people.

In London, the Black Death had a 50% kill rate in the 1400s. Half the people that got it died. It changed the world. Pandemics change the world. In this pandemic the death rate is about 1% or a little more. However, 10% to 30% of the people with Covid-19 have Long Covid. Today, Johns Hopkins says we are at 635 million people who have gotten Covid-19. 6.6 million or more are dead from it. Then we have between 65 million and 195 million people with Long Covid in the world.

We don’t know how long Long Covid lasts. We don’t know how to cure it. We do not know if we can cure it or if people will get better. We do not know, we do not know, we do not know.

Which is also terrifying. So the conspiracy and someone to hate or some group to hate or someone to fight is safer for many people.

Do not go there. We must grieve. We must help each other. We must face fear and not give in to it. We must not fall into the trap of the charismatic leader who will give us villains, who will lead us into a World War to distract us from our grief.

And from there into a world depression. Remember, the Roaring Twenties end with the worst depression the world has seen so far. Let us not repeat it, let us not beat it.

Peace you and blessings.

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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.

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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 β€œhigh-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.

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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.

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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.

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Care bare? No, Care Barrier.

My cardiologist told me to go to the Mayo Clinic six months ago.

I saw him last week and he wanted an update.

I said, “I filled out a request for a visit and my primary care referred me, but Mayo Clinic never called.”

He replies: “I will refer you.”

A week later I get a call from Mayo Clinic. But I do not have an appointment yet because

  1. They are booked out until November 18th. I am advised to “call daily” to get my appointment. They open up a week at a time, but don’t say when. A new meaning to “maybe you’ll get lucky”.
  2. They do not take my insurance and want a $5000 deposit prior to seeing me. I can fill out paperwork to ask for patient assistance. This would be the fifth hospital system in which I have filled out that paperwork. I have had to do it for four other places. The paperwork is different for each one and some even want a copy of my taxes. Do you think it’s secure? Of course it isn’t.
  3. I have to go in person to Minnesota, so add a round trip plane ticket to that $5000. They may do tests while I am there, so I don’t know how much of the $5000 I would get back. If any.

At the moment this seems insurmountable, but I will keep chipping away at all the insane barriers and paperwork. What a stupid medical system the US has, right?

We still need single payer and medicare for all. There would be one set of patient assistance papers, not five.