Covid-19: Approach to Long Haul

Covid-19: Approach to Long Haul

This is written primarily for physicians, but is for anyone to read. This is a working theory.

I am very interested in Long Haul because I was diagnosed with PANS by an older psychiatrist who worked exclusively with physicians in 2012. That was during my third flare. The evidence is mounting that Long Haul is an autoimmune disorder like PANS. I am sharing my approach to Long Haul based on both my clinic and personal experience.

Step 1. Validate the patient. Patients are terrified, understandably, to have something “like” chronic fatigue, fibromyalgia, or are worrying that they are “crazy”. Evidence is appearing that Long Haul, chronic fatigue and fibromyalgia are all complex autoimmune disorders with multiple antibodies. We do not yet have vast antibody tests. So the first step is to say that we believe patients and also that we can help. This is a very new and evolving field. I tell patients that it will change fast over the next few years. What I tell them today may change within a year as we get new information. If this makes them anxious, remind them of the Women’s Health Initiative and how that changed hormone therapy, and that cancer treatments keep improving.

Step 2. Lower stress and antibody levels. When we are high stress, cortisol and adrenaline go up and impair the immune system. The immune system is fired up and looking for something to do. Bacteria like strep A have evolved with us and have surface proteins that “look like us”. Our bodies make antibodies to the Strep A or Covid-19 and sometimes those antibodies attack us too, because our own proteins look the same. One way of lowering the antibody level is sweating. Hot bath or shower, sauna, hot tub, exercise. Support these and explain. A second way to lower the antibody level is to quiet the sympathetic nervous system and activate the parasympathetic nervous system. The parasympathetic is the quiet, relaxed and laughing one. Where does the patient feel safe, relaxed, quiet? After my father died, leaving a complicated and messy estate with an out of date will, I did a Sudoku daily for a year. I realized that the Sudoku relaxed me because I could not solve the estate quickly, but I could nearly always solve the Sudoku. Stupid cat videos, rocking chairs, knitting, gentle walk in the neighborhood if it feels safe, a walk in a mall (without one’s purse if overspending is an issue) — how does this particular person relax? Teach the slow breathing: in for a slow count of five and out for a slow count of five. Or square breathing: in for five, hold five, out five, in five. Twenty minutes of slow breathing supposedly moves almost everyone from sympathetic to parasympathetic. It may take practice and feel unfamiliar: I have had a veteran say that it felt very very weird to relax and he was not used to it. He kept at it.

Step 3. Symptom picture. At present I am basing this on my own experience with PANS. This is my working theory. Antibodies can block receptors or “turn the key” and activate receptors. Buprenorphine does BOTH (though it is not an antibody): at lower levels it turns the key and at higher levels it blocks. I would ask specifically about five fields. You many well be able to come up with more.

a. Brain function. In my PANS, I have antibodies to dopamine that turn dopamine on very high. Other physicians assume that I am manic. I am not quite manic, but it certainly feels awful. I feel like I have been shot out of a cannon when I wake up, with the morning cortisol rise. For me, the caffeine in coffee calms me, and my assumption is that it displaces the anti-dopamine antibodies. Tea does not work. I quit coffee for seven years until the latest flare. Albuterol doesn’t work. Terbutaline does work. I don’t know about theophylline or adderall, I have not tried them. If someone has “brain fog”, I assume that they have blocker antibodies OR be sure to ask if they were different in the first 4-6 months of the illness. For me, the antibodies rise for about 2-3 months and then take 2-3 months to drop. I have a lot of fatigue when they finally leave and this time I could tell the day that the last antibodies “fell off” or dropped to my “normal” level.
For blocked people, does caffeine help? How about albuterol? Adderall, theophylline, SSRIs. Every person will have different antibodies. Treatment needs to be tailored.

b. Muscle function. My anti-tubulin antibody (I have PANS, remember?) shuts down my “fast twitch” but not my “slow twitch” muscles. Tubulin is what makes the lung cilia function, so presumably mine are paralyzed during a flare and that is why I get pneumonia. I am tachycardic, resting heart rate 100 and walking slowly or talking heart rate 135, so I get very short of breath. Both the lung dysfunction and antibodies that upregulate my dopamine receptors make me tachycardic. I think that the people who can barely get out of bed with chronic fatigue have both fast and slow twitch muscles blocked. They need validation and lower stress. With support, perhaps the antibody level can be lowered enough that they can function again. I also found that my muscles hurt when my blood sugar was up and that if I keep it low, I have minimal muscle pain. I do not know if this is true for other people.

c. Gut function. In PANS, there appears to be an antibody to lysoganglioside. I don’t understand it but when I am sick, I cut carbohydrates way back or I am horribly ill. I tolerate lactose but not fructose, sucrose or gluten. One year after getting my last flare, I can eat everything except gluten. With this round I figured out that rising blood sugar when I am sick makes me acidic. This in turn worsens lung function more, as my body automatically slows my breathing to balance the acidity. I found that taking bicarb before a meal helped tremendously. In the worst/highest antibody part of the flare, I eat fats, because anything else makes me ill. SO: what can the patient eat or not eat and support them. Food intolerances are on the rise. Ask if there are foods that they cannot eat and support them not eating them. They can go to a very restricted diet that works for them and wait three weeks. After three weeks, food antibody levels are supposed to drop. They can start adding foods back in, one every three days. I do not know if this will work in a bad flare, the antibodies may be too high.

d. Lungs: do a resting heart rate and oxygen saturation. Do a walking heart rate and sat. Then do a LOADED heart rate and sat, with the person carrying the equivalent of two bags of groceries or their toddler. If they are young, they may hold their sats, but if their heart rate jumps to 135, that is like running a continuous marathon. Try oxygen and see if the heart rate comes down. Sleep apnea testing is also highly recommended. If they are tachycardic with daily activities, of course they have fatigue! Rest. Patients can learn to check a pulse or have a pulse ox, but fingers and second hand are cheap.

d. Other. I am reading that the main complaints in Long Haul are fatigue, brain issues, tachycardia and shortness of breath. What else really bothers the person? Sound sensitivity, loss of the sense of smell. The first step in helping with this is to listen and validate.

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.

Covid-19: long haul II

A few days ago my primary care doctor texts that she wonders if I have the autoimmune form of fibromyalgia.

Red alert. I have not heard about this.

I did a search last night and find this: https://www.sciencedaily.com/releases/2021/07/210701120703.htm.

Now, if you have been paying attention, you know that I was diagnosed with PANDAS in 2012, though Isuspect that it is really PANS. Both are autoimmune disorders. I also think that long haul covid is the same thing or something similar.

Meanwhile, they are now saying Covid-19 Long Haul may ALSO be an autoimmune disorder. Multiple sites below.

There is a paper in Nature that I don’t have access to, annoyingly enough. The fibromyalgia story in the above story is that they have spun antibodies down from human serum of affected and unaffected people and then injected them into mice. The mice get fibromyalgia symptoms from the affected antibodies but not from the unaffected ones. The symptoms in the mice go away when the antibodies fade out, in a few weeks. Aha.

The long haul story says that death from Covid-19 may be an autoimmune response, the antibodies going really nuts and making people bleed or their lungs close down. That is, swell shut. They have been drawing blood to study at different stages of Covid-19 and also checking autopsy patients. Usually autoimmune diseases are more prevalent in women then men but Covid-19 seems to be worse in men. This: “The mechanisms behind the production of such autoantibodies aren’t yet clear. Widespread and long-term inflammation during severe COVID-19 may cause the immune system to produce antibodies to pieces of the virus it wouldn’t normally recognize. Some of those pieces might resemble human proteins enough to trigger the production of autoantibodies.

Excessive inflammation could also boost production of autoantibodies that had previously only existed in the body at very low levels. Vaccination against COVID-19 is much less inflammatory than infection with the virus. In a separate study that looked at COVID vaccination, none of the healthy volunteers developed autoantibodies.” (2)(*)

Here is another fibromyalgia paper: https://www.verywellhealth.com/autoimmunity-neuroinflammation-in-fibromyalgia-5197944. That paper lists the autoantibodies that they are finding in fibromyalgia including gangliosides. The fourth antibody in PANDAS/PANS is anti-lysoganglioside. Aha! So this is sparking a serious revolution in medicine: it is looking like many of the mysterious and difficult to describe and quantify diseases may be autoantibody disorders. The anti-ganglioside antibodies were found in 71% of fibromyalgia patients. There are seven antibodies listed, including one to serotonin. In PANS, they are blaming two anti-dopamine antibodies. None of the fibromyalgia patients had ALL seven, but all of them had some of them. A different pattern in every patient, because we all make different antibodies. Fascinating.

One more: https://pubmed.ncbi.nlm.nih.gov/28339361/. People with lupus are more likely to have fibromyalgia and visa versa. “Increasing evidence indicates that N-methyl-D-aspartate receptors (NMDARs) play a major role in the induction and maintenance of central sensitisation with chronic pain. In this study, we evaluated the role of anti-NMDAR antibodies in the development of FM in patients with SLE.” Lupus and fibromyalgia share an autoantibody. Holy cats. NMDA is ALSO a neurotransmitter. Makes me wonder quite a bit about “psychiatric” disorders.

Remember that we make up all the words. So the autoimmune diseases are usually found by testing for a few antibodies. In the most common autoimmune disorder, hypothyroidism, we usually check the TSH and T4 level, so patient hormone levels rather than antibody levels. Over the last 30 years, we are able to test for more antibodies. Systemic lupus erythematosis, celiac, rheumatoid arthritis, juvenile rheumatoid arthritis. When I was in medical school in 1989, the rheumatology book was an inch and a half thick and there were loads of different patterns of disease. I am sure it is twice as thick now. Our initial test for autoimmune disease is for inflammation: an antinuclear antibody and an erythrocyte sedimentation rate. Some people have rheumatoid arthritis but their RF is negative: they have “sero-negative” rheumatiod arthritis, which is more likely “a different autoantibody that we have not tracked down” rheumatoid arthritis. In chronic fatigue and fibromyalgia, the antinuclear antibody and erythrocyte sedimentation rate are usually normal. I suspect both disorders of being “post” inflammation.

My prediction is a serious medical revolution, where we start regularly testing for autoantibodies. Whether that will be something like a pregnancy test but with hundreds of autoantibodies tested for, or whether there are some key indicator ones that we can find, is not clear. At any rate, trauma, stress and infection all increase the likelihood of getting one of these disorders and we have to figure out how to lower the load of all three.

Do you think people are instinctively quitting their jobs?

I had a phone visit with my pulmonologist yesterday. She was running about 35 minutes late, I sat on Zoom until she showed up. She looks exhausted. “We have less doctors and more patients.” she says. “I was on call for the critical care unit last week and I am on call Monday and Tuesday.” “Please take care of yourself,” I say, “We really need you.” She is smiling the whole time. She is worried about me dropping weight and I am worried about her.

Prayers and blessings all around.


1. https://www.cedars-sinai.org/newsroom/covid-19-can-trigger-self-attacking-antibodies/
2. https://www.nih.gov/news-events/nih-research-matters/autoimmune-response-found-many-covid-19
1. https://www.cedars-sinai.org/newsroom/covid-19-can-trigger-self-attacking-antibodies/
2. https://www.nih.gov/news-events/nih-research-matters/autoimmune-response-found-many-covid-19
3. https://thehill.com/policy/healthcare/591528-long-covid-study-author-explains-four-factors-that-can-predict-how-you-get
4. https://www.the-scientist.com/news-opinion/studies-identify-risk-factors-for-long-covid-69648
5. https://www.dailymail.co.uk/health/article-10436473/Is-people-sicker-Covid-19.html
*If that paragraph does not make people get the vaccine, they are living completely in a mad dream world, IMHO.
6. https://www.nih.gov/news-events/nih-research-matters/misdirected-antibodies-linked-severe-covid-19

For the Ragtag Daily Prompt: flickering. As in flickering hope.

Adverse Childhood Experiences 13: unsense

As a child in an alcoholic/addict household where you can not trust adults, who do you trust?

You either trust yourself or you buy in the alcohol story.

If you buy in, you have a high probability of either becoming an addict or marrying one, depending if you prefer the enabler or the enablee role.

If you trust yourself, you develop certain senses. You pay attention to people’s emotions. You pay attention to what people FEEL, what people DO and not what people SAY. You do not care what they say: what matters is what they do. My sister said she used to walk my parent’s house during high school and try to feel the mood. Did she need to hide?

The enabler role is trying to control the other person. There are amazing variations on this. I cared for a person whose sister would not take care of herself. Every time the sister is hospitalized, the person goes and cleans tons of garbage and rotted food from the apartment.

“Stop doing that,” I say, “You are enabling her. Call Adult Protective Services to go look at it instead.”

It can be very difficult to stop and can take years. People can change.

I have noticed that the enabler role is lethal. The enablers seem to die before the enablee. Certainly in my immediate family and with many patients too.

Enablee is the person controlled. Alcohol, drugs, gambling, anger, emotions. It is very very interesting to watch. I have read parts of my mother’s diaries. She was the enabler, with my father as the enablee. However, the diaries document them fighting in the middle of the night when he is drunk. And I remember high school, putting the pillow over my ears, because they were screaming at each other.

But wait. Why would she argue with her drunk husband? Why would anyone argue with a drunk person? You have to wait until they are sober.

And slowly I realize that my mother too was an alcoholic. I remember her drinking. Best cover for an alcoholic is a worse alcoholic, right? It’s fairly horrid. But it explains some stories and my food insecurity. They would not get up in the morning to feed me. My mother told stories of me trying to feed myself: cheerios and laundry soap. If my father was hung over, ok, but, why wouldn’t my mother get up? I think they were both hung over. That or else she really did not want a child. Especially a nine month old with opinions while she was trying to get over tuberculosis. She never got to hold me after birth until 9 months. And then I did not want her. I wanted her mother.

Trusting yourself, life can be a bit complicated. You sense the emotions others are hiding. Being a physician allows me to ask about the hidden things, very gently. Sometimes they come out right away. Sometimes it takes months. Sometimes years and sometimes never. My sister and I discussed going to parties and thinking, oh, that person is the child of an addict/alcoholic. This person is in pain. This person is quite happy but hiding stuff.

I told a counselor I do not know how to turn it off. She replies, “Why do you think I am a counselor?”

I don’t see auras. I feel things: like a cloud. Like a tiger, like a bear, like a whale, singing.

I think I will go with the whale.

tears falling

I am back in grief
in the ocean of tears
someone has to go there
and I can swim

I can swim on the surface
and I can swim in the depths
no trench is too deep
for me to explore

they think it is dark
in the deepest trench
it’s true that the pressure
is very strong

but all of us
in the deepest depths
learn to glow
and shine

that is what the trench does
at first you are terrified
an ocean of grief
an ocean of tears

but then you see light
beings glowing
some are eating each other
but others smile and wave

if you are not too frightened
if you do not fight and struggle
if you take a breath, calmly
you find you can breathe

and you look at your hands
in wonder as you breathe
in the ocean of grief
in the ocean of tears

you too are glowing softly
in the ocean of grief
in the ocean of tears
you feel welcome

Hurricane Ridge

This is my mother’s biggest watercolor painting. I have it hanging in my guest room. It is huge and gorgeous, nearly the width of the double bed.

I miss her. Helen Burling Ottaway. I will put more of her artwork up. She died in 2000, but I still have the art.

wear and tear

B and I have been walking the beaches a lot since we returned from our trips in January.

We are noticing how much the beach changes daily. The high winter tides wash sand out and back in. Some days the beach is covered with pebbles and some days it is smooth sand. The boulders move and the cliffs do too.

With the heavy rains this year, sections of cliff collapse. We have both edged closer to the water when we see sections of sand and clay that have fallen: some are as large as a car or larger. We would not survive if that fell on us.

Trees hang on for as long as they can, but they fall too.

We also see root systems exposed when a section of the cliff falls and know that those trees are struggling to survive.

We are debilitated by the length of the pandemic, but going out walking every day, watching birds and trees and the beach change, the eagles flirting, the seals peering out of the water, this renews me. I hope you have a place to walk.

For the Ragtag Daily Prompt: debilitating.

saved

when your parents die
you will find what they saved

you will find things in the house
that you do not know why they saved

you may find linens carefully folded
and papers from the past

the linens embroidered by ancestors
but you cannot ask which ones

photographs of people you don’t know
and which are not labeled

a reference to a ring that your great aunt had
but she has been dead since 1986

when you go to your parents’ house
ask them what they have saved

ask them why it has been saved

ask them now
because when they are gone
it is too late

to ask about what they saved

________________________

There are also families estranged, where they have cut ties or emigrated or escaped abuse, and have reason not to save anything or speak about it.

We want freedom but we want love too. For the Ragtag Daily Prompt: freedom.