Category Archives: behavioral health

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You will be labeled

If you get sick
with something the doctors don’t understand
you will be labeled
unstable
mental
bipolar
crazy.

They will try to drug you.

How do you tell
when they are right
and you are crazy
brain on fire
and when you aren’t?

Don’t ask me.
I’m a Family Practice doc
and I’m rural
and I’m a girl.

I’m the one they make fun of
in the medical schools.
“The rural doctor
transferred this patient.”

Yes we did.
Because we knew it was something
different
that needed more
than we had
in our small town
in our small hospital.

Once a neurosurgeon says,
“You are transferring the patient
because it’s Friday
and you don’t want to work
on the weekend.”
“She needs an MRI,” I say
“and we don’t have one.”
and transfer her anyway.
I call two days later.
After the MRI, she is in
the operating room
for a tumor in her spine.
He doesn’t call me back
but I hope he remembers.
I certainly do, after years
and years.

If you get sick
with something the doctors don’t understand
you will be labeled
unstable
mental
bipolar
crazy.

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As I was going to Washington, DC

As I was going to Washington, DC

I met insurance CEOs who said “Whee”!

500 Insurance CEOs said Weeee!

Have ten insurance plans EEEEEach!

Every plan has it’s own website!

Every plan is different, password for each site!

Every plan refuses coverage for different treatments, right?

Every plan demands prior authorization, doctor’s office up all night

If they refuse chemotherapy the doctor has to fight?

Prior auths, treatments, passwords, plans

Insurance companies, all those demands

As I was going to DC

How many passwords will I need?

______________________

For the Ragtag Daily Prompt: snail.

I was pricing health insurance in case I get well enough to work more. I can get an $800 a month with a $8000 deductible or a $1435 a month with a $2000 deductible. I would very much like to work part time treating Long Covid. But, ironically enough, looks like I can’t afford health insurance. It costs more than the malpractice would. Ironic, huh? It’s not like we need doctors. (I do not have a medical release yet anyhow, but time to do research. It’s making me gloomy.)

You know, if we do get Artificial Intelligence, it will take one look at the United States Medical non-system, decide we are insane, and wipe us out.

And honestly, when I was working for the hospital clinics, I thought the most brilliant person in our office was the woman who could extract a prior authorization from so many insurance companies. I would send the referral to print and half the time she would have it authorized by the time the patient got to the front desk. And why do we waste all that brilliance on giving health insurance companies a profit of 20 cents out of every dollar? That is $20,000,000 out of $100,000,000. Looks worse with bigger numbers, doesn’t it?

Physicians for a National Healthcare Program: https://pnhp.org/.

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Keep it simple

Sometimes I just despair as I read new guidelines. Don’t you? Maybe you are not a physician and don’t try to keep all of this impossible stuff in your head. Mine is full. Tilt.

Diabetes alone: if someone has type II diabetes, there are specific blood pressure guidelines, cholesterol guidelines, we are to do a hgbA1C lab test every six months minimum and more often if they are out of control, and a urine microalbumin/creatinine ratio yearly. If that starts being abnormal we are to start one of two classes of blood pressure medicines even if they have normal blood pressure.

Oh, and don’t forget: a yearly eye test and we are supposed to check their feet at EVERY visit to make sure they are not getting diabetic ulcers.

Got that? And that is just type II diabetes. And there are a whole raft of medicines, about forty right now. Some are weekly shots, some are daily tablets, some are twice a day or with every meal and they all have their own side effects, how fun. Check drug interactions, are their kidneys ok? Is their liver ok? Diabetes increases the risk of heart attack and stroke and don’t forget those feet.

Diabetes is one of the most complicated sets of guidelines, but there are a rather appalling number of guidelines. Maybe we should sic an AI on that job: Mr. Smith has type II diabetes poorly controlled, hypertension, erectile dysfunction, feels a little short of breath and has a bruise on his left shin after tripping yesterday. Please, AI, organize a twenty minute visit to cover as many things as possible efficiently and have the note finished and followup arranged by the end of it. Then it turns out that what Mr. Smith really wants to talk about is his niece who has just overdosed and nearly died from heroin, so everything else goes out the window. Maybe I should see him weekly for the next month.

Do you want to keep it simple and stay out of the doctor’s office and more importantly out of the hospital? If you are 25 and healthy, you don’t much care because old is unimaginable.

But there is a very nice study that looked at just five things regarding health, over 28 years for men and 34 for women: “The researchers looked at NHS and HPFS data on diet, physical activity, body weight, smoking, and alcohol consumption that had been collected from regularly administered, validated questionnaires.”

Here is an article about the study: https://www.health.harvard.edu/blog/healthy-lifestyle-5-keys-to-a-longer-life-2018070514186

Here is the study: https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.117.032047

So let’s break the five things down. Here are the more formal definitions: “Using data from the Nurses’ Health Study (1980–2014; n=78 865) and the Health Professionals Follow-up Study (1986–2014, n=44 354), we defined 5 low-risk lifestyle factors as never smoking, body mass index of 18.5 to 24.9 kg/m2, ≥30 min/d of moderate to vigorous physical activity, moderate alcohol intake, and a high diet quality score (upper 40%), and estimated hazard ratios for the association of total lifestyle score (0–5 scale) with mortality.”

First: never smoking. I would add never vaping and not living in a cave and burning wood and hopefully not living right next to a 12 lane superhighway, all of which are bad for the lungs. Ok, while we are at it, don’t use methamphetamines or heroin or cocaine or krocodil, right? They didn’t even include those in the study.

Second: Body mass index 18.5-25. If you aren’t there, it is diet and exercise that need to change.

Third: Thirty minutes or more per day of moderate to vigorous physical activity. That can be ten minute intervals. Three can have an enormous effect on number two.

Fourth: moderate alcohol intake. Ok, alcohol is bad for the heart, period. So is tobacco. They defined moderate as less than or equal to “5 to 15 g/d for women and 5 to 30 g/d for men”. Let’s do the math: a 12 ounce beer that is 5% has 14gm of alcohol. Here: https://www.niaaa.nih.gov/alcohols-effects-health/overview-alcohol-consumption/what-standard-drink. The 8.9% 16 ounce beer at our local pub has quite a bit more. Here is a website where you can calculate how much alcohol is in a drink: https://www.rethinkingdrinking.niaaa.nih.gov/Tools/Calculators/Cocktail-Calculator.aspx.

Fifth: Diet. There is an overwhelming amount of confusing information on the internet and some of it is not only confusing but wrong. “Diet quality in the NHS, HPFS, and NHANES was assessed with the Alternate Healthy Eating Index score (Methods in the online-only Data Supplement), which is strongly associated with the onset of cardiometabolic disease in the general population.” I have not assessed my own Alternate Healthy Eating Index score. However, there are a couple very straightforward things that help with diet. First: No sweetened drinks. That means that sugary coffee with the syrup should go. I quit drinking mochas when I read that a 12 ounce one has 62 grams of carbohydrate. I would rather have a small dark chocolate. And sodas are just evil and juice not much better. Eat the fruit instead. Second: eat vegetables, every meal. A fruit is not a vegetable and no, potato chips don’t count. I mean a green or yellow or red vegetable. You can saute any vegetable, or any that I can think of. I am not counting grains as a vegetable, so pasta, pizza, potato chips and so forth do not count. Beans do count. Third: the DASH diet recommends only a tablespoon of sweetener per day. That is not very much. You can make that cheesecake slice last a week! A small piece of dark chocolate daily or tablespoon size chunk of that cheesecake.

I had a diabetic patient who would be fine, fine, fine, then out of control. “WHAT are you eating? And drinking?” The first time it was two 16 ounce Mochas a day. Then he was fine for a year and a half. Then labs went haywire again. “What are you drinking?” “Well,” he said, not wanting to admit it, “Ok, I decided to try Caramel Machiattos.” “No, no, no! You can’t do that! You’ll end up on insulin!” “Ok, ok, got it, got it.”

And what is the difference if I try to do those five things, you ask, skeptical. “We estimated that the life expectancy at age 50 years was 29.0 years (95% CI, 28.3–29.8) for women and 25.5 years (95% CI, 24.7–26.2) for men who adopted zero low-risk lifestyle factors. In contrast, for those who adopted all 5 low-risk factors, we projected a life expectancy at age 50 years of 43.1 years (95% CI, 41.3–44.9) for women and 37.6 years (95% CI, 35.8–39.4) for men.The projected life expectancy at age 50 years was on average 14.0 years (95% CI, 11.8–16.2) longer among female Americans with 5 low-risk factors compared with those with zero low-risk factors; for men, the difference was 12.2 years (95% CI, 10.1–14.2).”

____________________

I took the photograph from Marrowstone Island. What does a healthy seal diet look like? I am so lucky to have miles of beach to hike, as long as I watch the tides and don’t mind rain.

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Shame and anger in overuse illnesses

“amongst those who treat addicts of any kind generally agree that anger and shame help no one and is actively counter-productive.”*

Wait.

I have to think about that statement.

I do not agree at all.

Ok, for the physician/ARNP/PAC, anger at the patient and shaming the patient are not good practice, don’t work, and could make them worse. BUT anger and shame come up.

In many patients.

Sometimes it goes like this with opioid overuse: the person shows up, gets on buprenorphine, and is clean.

It may be a long time since they have been “clean”.

One young man wants to know WHY I am treating him as an opioid overuse patient. “Why are you treating me like an addict?”

I try to be patient. I recommended that he go inpatient, because I don’t think we will cut through the denial outpatient. Very high risk of relapse. “You have been buying oxycodone on the street for more than ten years.”

“I’ve been buying it for back pain, not to party.”

“Did you ever see a doctor about the back pain?”

“Well, no.”

“Buying it illegally is one of the criteria of opiate overuse.”

“But I’m not an addict! I’ve never tried heroin! I have never used needles!”

“We can go through the criteria again.”

He shakes his head.

He is in denial. He is fine. He doesn’t need inpatient. He is super confident, gets work again, is super proud.

And then angry. “My family still won’t talk to me!”

“Um, yes.”

“I’m clean. I’m going to the stupid AA/NA groups! Though I don’t need to. I’m fine!”

“What have you noticed at the groups?”

“What a bunch of liars!” he says, angry. “There are people court ordered there and they are still using! I can tell. They are lying through their teeth!”

“Obvious, huh?”

“Yeah!”

“Did you ever lie while you were taking the oxycodone?”

Now he ducks his head and looks down. “Well, maybe. A little.”

“Do you think your family and friends could tell?”

He glances up at me and away. “Maybe.”

“Your family may be angry and may have trouble trusting you for a while.”

“But I’ve been clean for four months!”

“How many years did you tell untruths?”

“Well.”

Shame and anger. Anger from the family and old friends, who have heard the story before, who are not inclined to trust, who are hurt and sad. The first hurdle is getting clean, but that is only the first one. Repairing relationships takes time and some people may refuse and they have that right! Sometimes patients are shocked that now that they are clean, a relationship can’t be repaired. Or that it may take years to repair. My overuse folks are not exactly used to being patient. And sometimes as they realize how upset the family and friends are, they are very ashamed. And some are very sad, at years lost, and friendships, and loved ones. I have had at least one person disappear, to relapse, after describing introducing someone else to heroin. He died about two years later, in his forties.

Shame and anger definitely come up in overuse illness.

The above is not a single patient, but cobbled together from more than one.

______________________

*from an essay titled “F—ing yes, I’m a fatphobe” on everything2.com. Today there are two with that title. The quotation is from the second essay.

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Walk with rabbits

Some days I can’t chuckle
when the news rolls in
my heart could buckle
shootings again

US gun habits
What’s up doc? Dagnabbit.

Shootings on the year of the rabbit
dancers dead as they celebrate
Why are guns such a habit?
I refuse to fill my heart with hate

Gun sales stab it
Year of the rabbit

Forgive but do not reconcile
let my resolve not buckle
mental health takes a while
let no demented chuckle

Fearful gun habits
online snared like rabbits

They argue they must defend their homes
daughter teacher on the line
fearful males online alone
think that guns will make them fine

Fear is a habit
Stop being rabbits

Leave your basement
Help another
Walk the pavement
Earth as mother

Make it a habit
To walk out with rabbits

_______________________

For the Ragtag Daily Prompt: chuckle.

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drkottaway’s werewolf theory

Papers about antibodies and immune system responses are proliferating. About Chronic Lyme disease, fibromyalgia, chronic fatigue, long haul Covid-19. We are near the tipping point of understanding vastly much more about the immune system, though understanding what is happening and being able to “fix” it are poles apart. You have to invent the germ theory before you can invent an antibiotic.

Allopathic medicine currently says that behavioral health disorders are caused by “neurotransmitter imbalances” in the brain. That’s a bunch of vague hooey, isn’t it? There is one mouse neuron that has been studied and has 300 different kinds of receptors for serotonin. Scientists blocked one and the mice acted obsessive compulsive. That was one kind of receptor. They are trying to figure out the other 299 and what they do in combination. Does this sound like we understand the brain? No, it doesn’t.

BUT there are papers about antibodies. Antibodies can mimic neurotransmitters, like dopamine, like serotonin, like adrenaline, like norepinephrine. Hmmmm. With multiple different types of receptors for each neurotransmitter, the antibodies could be specific for some receptors and not others. The antibodies could block the receptor, like the wrong key in a lock. Or the antibody could act like a key and turn the receptor on.

One barrier to understanding Long Haul Covid-19 and chronic fatigue as autoimmune diseases is that they do not cause a rise in the usual inflammatory markers. Those are the ESR (erythrocyte sedimentation rate) and CRP (um, I forget — oh, C-reactive protein). This does not mean that there is no inflammation or that these are not autoimmune disorders. This means we have not found a diagnostic marker. Rheumatoid arthritis can be “sero-positive”, with a positive rheumatoid factor marker. Or it can be “sero-negative”, with a negative rheumatoid factor lab, but it’s still rheumatoid arthritis.

What does this have to do with werewolves? Great question! I am thinking about the adaptive advantage of making antibodies to our own neurotransmitter receptors. How could that POSSIBLY be an advantage? What it means is that when someone is very very ill, or very very stressed, or both, at a certain point the immune system starts making crisis antibodies. These cause neurotransmitter and other symptoms. Brain fog, obsessive compulsive disorder, anxiety, muscle pain, fatigue and on down some very long lists. A recent study of fibromyalgia patients looked at 8 antibodies. One was an antibody to the GABA receptor. All of the patients had some of the antibodies, none of them had all of them, and they all had different patterns. So there is no marker and the neurotransmitter antibody could explain brain function changes.

Why werewolves? I am thinking of the old legends that are embedded in multiple countries and languages. Werewolves, demons, vampires, angels. My fourth pneumonia has left a problem: I can’t tolerate gluten any more. We did the antibody tests last week. I think they will be negative, because my gluten intolerance is relatively mild. I can have a tiny bit. People with bad celiac really can’t have any. I may have an antibody that is either a low level or one that has not been described yet. So with repeated infections, four pneumonias plus the exposure to my mother’s antibodies to tuberculosis in the womb, I now have what is looking like a permanent change in diet. This pneumonia started in March 2021, so it’s over a year. I had diverticulitis after that in August. I ate a piece of tempura two months later and thought, ooops, that has gluten! The next day I hurt in the same place as the diverticulitis and decided that I would stay well away from gluten for a while.

The adaptive advantage of having antibodies that change our diet or character or make us stronger or weaker would be to force us to change. To leave a community. To ask for help. To hide during a pandemic. To fight or be suspicious of everyone. Being a grumpy werewolf might save your life in a pandemic, as long as you don’t break any laws and eat someone. A friend likes the dark and hibernates and likes protein best: vampire or bear? I am not sure, maybe a vampire bear. Chronic fatigue seems to “save” or at least stop people from working 20 hours a day and driving themselves to illness. I am not saying that chronic fatigue is good or fun: but it might be adaptive. Brain fog and stiff muscles: zombies, anyone?

Can we do anything to prevent ourselves from getting these mysterious but probably autoimmune disorders? Yes. Lower stress. BUT WE ARE IN A PANDEMIC. Yes, but we can still lower stress. Here are three things to do:

  1. Do not work yourself into the ground, into illness, into the grave. Take breaks.
  2. BREATHE. A simple exercise to quiet the nervous system is to breathe in four seconds and out for seconds. You have to pay attention or count, unless you do it as part of facing a wall meditating, but it works. The veterans I worked with agreed that this works and they are not an easy crowd to please.
  3. LOLCATS or whatever makes you laugh. Sit under a tree. Throw rocks in the water at the beach. Play with a child’s toy with or without the child. (Remember to share.) Sit in a rocking chair and rock gently. Go for a walk, slowly, no ear buds. Listen to the birds. Watch the tops of trees move in the wind. This quiets the sympathetic fight or flight response and switches us to the relaxed parasympathetic. Do this every day at least once.

These all quiet the nervous system which in turn quiets the immune system.

But wait, some people are in a war zone or a disaster zone or an earthquake! Yes. Help them. Get them out. Send something locally or internationally. Give something to your local “buy nothing” group or Heifer or one of the groups in your town: Rotary, Soroptmists, Elks, your local Area Aging help group.

And that is Drkottaway’s Werewolf Theory, a work in progress, under study. I need NIH West. Contact me to start the fund drive.

____________

References:

Overview of fibromyalgia: https://www.verywellhealth.com/autoimmunity-neuroinflammation-in-fibromyalgia-5197944

Fibromyalgia as an autoimmune disorder: https://spondylitis.org/research-new/fibromyalgia-might-be-an-autoimmune-disorder-a-new-study-says/

They have given human antibodies from fibromyalgia patients to mice. The mice get fibromyalgia. https://www.nature.com/articles/s41584-021-00679-y

I took the photograph of Sol Duc today.

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Practicing Conflict

An essay from my church talks about the writer avoiding conflict, fearing conflict and disliking conflict. This interests me, because I do not avoid conflict, I don’t fear conflict and actually, I like it. Our emeritus minister once did a sermon in which he said that when you are thinking about two conflicting things at once, that is grace. I have thought about his words many times, especially when I am not in agreement about something.

Does this interest in conflict mean I fight all the time? Well, sort of, but not in the way you think. I don’t fight with other people much. I fight myself.

What? No, really. Most topics have multiple sides. Not one, not two, but many. Like a dodecahedron or a cut gem. Hold it up to the light, twelve sides, each different. I argue the different sides with myself.

I learned this from my parents. My parents would disagree about something, they would discuss or argue about it, and then they would bet. Sometimes they bet a penny, sometimes a quarter, sometimes one million dollars. Then one of them would get up and get the Oxford English Dictionary, or the World Atlas, or some other reference and look it up. This was pre-internet, ok? 1970s and 1980s.

Sometimes my parents would even pay each other. The penny or quarter. My father spoke terrible French and my mother had lived in Paris for a year after high school, so he could get her going by insisting that his French was correct. It wasn’t. Ever.

There were other arguments in the middle of the night that were not friendly and involved yelling, but the daytime disagreements were funny and they would both laugh.

Once my sister is visiting after my mother has died. My father is present. My father, sister and I get in a three way disagreement about physics. I’m a physician, my sister was a Landscape Architect and my father was a mathematician/engineer, so we are all three talking through our hats. However, we happily argue our positions. Afterwards, my gentleman friend says, “That was weird.” “What?” I ask. “That was competitive and you were all arguing.” “It was a discussion and we disagreed.” “I won’t compete.” “We let my dad win, because it makes him happy.” “That was weird.” “Ok, whatever.”

My gentleman friend is also shocked when my teen son challenges me at dinner. My son says, “I am researching marijuana and driving for school and there isn’t much evidence that it impairs driving.”  I reply, “Well, there is not as easy a test as an alcohol test and it was illegal, so it has not been studied.” We were off and having a discussion.

Afterwards my gentleman friend says, “I am amazed by your son bringing that up. We weren’t allowed to discuss anything like that at dinner.” I say, “We pretty much discuss anything at dinner and both my kids are allowed to try to change my mind. About going to a party or whatever.” He shakes his head. “That is really different.” “Ok,” I say.

This habit of challenging authority, including adults, did not go over well when my son was an exchange student to Thailand. It did not occur to me to talk to him about it. He figured it out pretty quickly.

Back to my internal arguments. If I take a position, I almost immediately challenge it. I think of it as the old cartoons, with the angel on one shoulder and the devil on the other. The devil will make fun of things and suggest revenges and generally behave really badly. The angel will rouse and say, “Hey, you aren’t being nice.” Then they fight. The internal battle very quickly becomes comic with the two of them trading insults and bringing up past fights and fighting unfairly. When it makes me laugh inside, I can also be over the driver who cut me off, or someone who spoke nastily, or whatever. My devil is very very creative about suggested revenges. When the angel says, “You are meaner than the person who cut you off!” I am over it.

When I was little and disagreeing with my family, my sister could tell. “You have your stone face on!” That meant I was attempting to hide a feeling, especially fear or anger or grief. Siblings and family are the most difficult because they can read us and see through us like glass. My physician training also teaches control of feelings. I have sometimes wanted to grab a patient and scream “Why are you doing this to yourself?” but that really is not part of the doctor persona. I am doing it inside, but I can put it aside until later. Then the devil goes to town! And the angel tries to calm the devil down.

Maybe we all need more of this skill. Pick a mildly controversial topic. Argue one side of it. Then switch positions and argue the other side. Go back and forth until it gets ridiculous. Let each side get unreasonable and inflammatory and annoying. This can play in your head and not on your face. Once you can do a mild topic, move on to something a bit more difficult. If you only know the arguments on your side, read. You can find the other side, the internet is huge. Start gently.

A friend says, “You always argue about things.” I say, “I prefer to think of it as a discussion.” “You always take the other side.” “Well, it interests me. And if there is no one to discuss something with, I discuss it with myself!” “Weirdo,” says the friend. I think he’s jealous, really I do. Don’t you?

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how to protect codgers

A friend calls me yesterday, complaining that the new Covid-19 vaccine doesn’t prevent infection nearly enough for him to want to get it. He is in his 70s and says darn it, he’d still have a 60% chance of getting infected.

I thought about it and wrote back this morning:

Re the new vaccine the POINT is NOT to prevent infection, though it lessens it in codgers like me and you.

The point is that the vaccinated younger people shed a s–tload less virus if they get it, because their immune system kills it fast. This reduces the amount of circulating virus so that the codgers stop dying like flies. Also the codgers get less sick if their immune system recognizes B4 and B5.

Got it? Get the vaccine.

I am waiting for the top ten causes of death for 2021 to come out. Over one million US people have died of Covid-19. In 2020, there were between 300-400,000 deaths from Covid. That means that we lost 600-700,000 in 2021. If we lost close to 700,000 people, then Covid-19 would beat out heart disease as the number one cause of death in the US. When did that last happen? During the 1918-1920 influenza, the “Spanish” flu that has been traced to a chicken farm in the US midwest.

Here is a provisional and not final list: https://www.cdc.gov/nchs/data/health_policy/provisional-leading-causes-of-death-for-2021.pdf. Hmmm. The numbers are not adding up unless a lot of US people died of Covid-19 in early 2022. And cancer is higher than it’s ever been and creeping up on heart disease. But these are not the final numbers, sigh.

Here is a fascinating chart: https://www.cdc.gov/nchs/data/dvs/lead1900_98.pdf. If you scroll to the end, the top two causes of death in 1900 were pneumonia first and tuberculosis. Heart was fourth. Heart rises to first in 1910 but then pneumonia is back at the top in 1918-1920. I think that the heart has been number one ever since, in the US. World top ten is not the same.

This is not the first pandemic and it won’t be the last. It is horrible. I think that everyone is doing the best they can, though some responses seem saner than others. Remember the old doctor joke about what to do in a code (when someone’s heart has stopped). First: check your own pulse. It’s a corollary that if the patient is dead, you can try to bring them back, but you can’t make them more dead. Also, my latest Advanced Cardiac Life Support class, on line, told me that sometimes I do not have to do cardiac life support. Their example was a decapitated patient. Really? Ouch, doctor humor. But truly, if you are freaking out or want to scream at someone or feel like the world is nuts and you have to do something, first check your own pulse. Slow it down. Breath in four and out four. I can drop my pulse from 101 to 71 in 20 seconds, just by slowing my breathing. You can learn to too.

My recommendation is that if you are due for the booster, get it. And thank you for protecting me and my friend and the other codgers.

No, it is not snowing here yet. But codger seems to be a word for an old GUY. Humph. Would a grumpy hummingbird be a grummer? What is a female codger? I am using codger for any gender, to heck with it.

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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.