Who would I be?

If I have had PANS since birth, who would I be if I had not contracted it?

No one knows. We are still arguing about whether PANDAS and PANS exist. But, my daughter says, we make up all the words. The definitions of illnesses CHANGE over time, and what an illness MEANS. Tuberculosis was an illness of poets and people too noble for this world, until microscopes became advanced enough to see the tiny bacterium, and then it became an illness of the crowded unclean poor. Medicine and science continued to study it. Once we recognized that it is an airborne illness, tuberculosis sanatoriums were set up, to quarantine people. My mother was diagnosed with tuberculosis when she coughed blood 8 months pregnant, so I was born in a sanatorium and avoided contracting tuberculosis as a newborn.

Antibodies cross the placenta, even though the tuberculosis bacterium does not. Usually infants contract tuberculosis and die, at least when I was born. The antibodies can trigger PANS or PANDAS.

The antibodies prime the fetus’s immune system. This makes sense, right? The fetus has a sick mother and best if its’ immune system is ready to fight.

Did my younger sister have it? I do not know. Not as badly, would be my guess. My mother said that as kids, we’d both get sick, but I got sicker. We both had strep A many times. My sister got mumps, off from school for three weeks, and I did not get it. But I got everything else.

Now the estimate for children with PANS or PANDAS is 1 in 200. This is enormous. A high prevalence. Antibodies, that I suspect are adaptive and lie in readiness for a pandemic or a crisis. And now we have had another pandemic, with the last really world wide bad respiratory one 100 years ago. Is the prevalence rising because of the pandemic or are we figuring out some of the cause of behavioral health illness or is the definition of illness changing or all three? I think all of them.

My cousin’s mother had polio either during her pregnancy or very soon after. My anthropologist uncle took his family to Bangladesh, where he was doing linguistics. So does my cousin have PANS or PANDAS? I do not know.

And what of my children? My pregnancy with my older child was fourth year medical school and went well. My pregnancy with my second was very complicated. I was in my first year of work as a rural Family Practice doctor and working too hard. I ended up on bed rest for three months and on a medicine. Is labor at 23 weeks an illness? Does it affect the fetus? I was on medicine from 23 weeks to 37 weeks. What effect does it have?

Medicine is still changing and changing quickly. We don’t know. There is so much we do not know.

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PANS/PANDAS: https://www.pandasppn.org/guidelines/

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The photograph is me and my sister, in about 1967ish. I do not know who took it.

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/.

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.

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.

If it don’t fit, don’t force it

Templates in primary care medicine suck.

Why? The problem with templates in primary care medicine is they focus on getting a specific list of questions answered for something like ear pain or back pain. They miss the weird stuff. They miss the outliers.

I hated the templates when we got our first electronic record in the early 2000s. The doctors who liked computers spent a year picking the system. Then they trained all the clinics for one week and we all went live. One of the biggest problems was that they liked computers and talked the language. We didn’t. We quit asking questions within a week, because when we asked a question it 1. Was a user problem and 2. They treated us like we were stupid and 3. They answered in Geek, which we did not understand.

We quit asking questions. The nurses and I all filed for workman’s comp because our shoulders locked up. Our shoulders hurt. We figured out how to get the stupid thing to work. Every doctor and nurse and PAC and nurse practitioner worked to figure it out on our own.

Two years later, they set up some standards for use. We resisted again, because they gave us orders in Geek and anyhow, we had no respect for them and we didn’t care. Change what we were doing? After no support for two years? Good luck!

It took me two years and three months to get the system to write what I considered a good clinic note. I had contacted an outside specialist three months in and asked how our notes were.

“You want me to be honest?” he said.

“Yes.”

“They suck. They are useless.”

“That’s what I thought.” I went on fighting the system and hating it. I won, eventually. Parts of my note continued to suck, but I figured out how to work around the stupid templates and put in some REAL information.

Now wait, you say, is the template totally useless?

In some situations, like emergency rooms, it may be very useful. It helps keep a harried ER team with four people from a car wreck from missing something. And if you are an ENT, otolaryngologist, you do see a lot of ear and mouth and throat things, so templates may help. But I think they are terrible for primary care.

They are good for billing, though. If you have all the boxes checked, the insurance company pays, and you can move on to the next victim. The insurance companies pay more if you see more people in a day. That is why our administration said, “See people for one thing per visit.”

However, that is not ethical. Say it is a 70 year old diabetic with atrial fibrillation on coumadin with a bladder infection. You cannot just say bladder infection and slap them on sulfa. For one thing sulfa screws up the coumadin and puts them at risk for bleeding. For a second, diabetes can affect kidney function and so can age and you have to adjust antibiotic dose for lower kidney function. For a third, if their glucose levels are out of control, the infection may not be controlled by an antibiotic. It’s not one thing. And the average patient has 4 chronic disorders in a study way back in the early 2000s. That means some people have none, some people have eight or more and most people have 3-5. Hypertension, diabetes, toe fungus, chronic shoulder pain, heart disease, the list goes on and on.

In any visit, I am alert for the things the DON’T fit. One time I am doing a new patient visit for back pain and note that she is hoarse. I bug her about the hoarseness. She admits it is continuous and has been there for two months. I do two referrals, because continuous hoarseness can be laryngeal cancer.

When she returns, she thanks me. She has vocal cord polyps, not cancer, but needs laser surgery. “You didn’t have to do that but you did.” she says. And do I feel good about not ignoring it? The visit went over time, but I’d rather go over time than miss laryngeal cancer, right?

We were taught to let the patient talk. Open ended questions. They’ve done studies that doctors cut people off from telling their stories very very quickly. If you let people talk, sometimes they say something that doesn’t fit the template, and we have to pay attention. Sometimes a comment or a couple comments are the clue, the key, the thing that doesn’t fit. Don’t force it into the template. Pay attention instead.

_______________________

The very serious group of people is a county medical meeting, 2014.

Doing the best with what you have

Medicare doesn’t cover everything.

It can’t. There are new things being thought up all the time. Some are legitimate and some are scams. There are tons of quack medicine videos and supplements and stuff on line.

But there is also a matter of personnel and resources. Sometimes we do not have enough. Then we have to do the best we can with what we have.

There is a particularly difficult case from my second year of rural Family Medicine with Obstetrics. Things went right but just barely. This is from memory and over 25 years ago, in the 1990s, so I can’t violate hipaa because I can’t remember names from then. Mostly.

I had a pregnant woman whose pregnancy had gotten complicated. Her ultrasound showed an abnormal placenta. Very rarely, the placenta can grow into the uterus too far, and form a placenta increta. Even more rarely it can grow THROUGH the wall of the uterus and into another body part. That is called a placenta percreta.

In this case we thought that the placenta had grown into the bladder. We were not certain. The obstetricians were aware. Our patient was aware. A cesarean section was planned for when the fetus was mature.

Then she developed a second pregnancy complication. Preeclampsia. This is a complication where blood pressure rises, there is protein in the urine and many things can go wrong. It can progress to eclampsia, which means seizures. This is Very Bad, which means the mother and fetus can die.

She developed HELLP syndrome. This is an acronym. The P is what I worried about, platelets. Platelets help your blood clot. Her platelet count was dropping out of sight. We were rural, 180 miles from the nearest high risk obstetrician. We did have blood for transfusion but NO PLATELETS.

The treatment for preeclampsia with HELLP syndrome is to deliver the baby. I called our obstetrician the minute I got the lab result. “No platelets — can I fly her out?”

“YES! FLY HER OUT!”

Transfer to a bigger hospital with facilities for a premature infant and with platelets, because she needs a cesearean section and she could need a hysterectomy if that darn placenta has grown through. Messy.

Problem number three: weather. We are in Alamosa, Colorado, at 7500 feet, which is the valley floor. We are surrounded by 14,000 foot peaks with passes in four directions. That nearest hospital with platelets is 180 miles and over a 10,000 foot pass and it is snowing.

I call Denver first. 250 miles. Fixed wing life flight. Nope, the weather is too bad to the east and north.

I call Albuquerque. 250 miles. Nope, the pass is socked in, the plane can’t get through.

I call Grand Junction. About the same distance. They say “WHERE are you?” I’ve never tried to send anyone there before. They demur and I cajole and beg. “Okay, okay!” The high risk obstetrics doctor can’t be looking forward to meeting this patient, but they accept.

From the start of calling to the arrival of a plane and crew usually takes about four hours. I want to chew my nails.At last I hug my patient goodbye and they go.

I get the call about 6 hours later. Delivered and they did have to do a hysterectomy, but mother and baby are fine. Her bladder was untouched. They had platelets.

Whew! I was so happy, and mom and baby too. Let’s give credit to my patient too: she got prenatal care. She paid attention. She knew she was high risk. I had told her to come in if anything changed and she did, so we caught the preeclampsia on time.

But it could have gone wrong in all sorts of ways. We were both careful and we were lucky. If the storm had been over Alamosa we would have done the best we could then, too, but it could have turned out quite differently. And thanks to the high risk obstetrics doctors who accept complex patients that they have never seen from rural doctors like me!

Blessings. Blessings on all the nurses and doctors and midlevels and hospital housecleaners and security and lab workers and the Life Flight personnel and First Responders and everyone who has worked and worked and worked through the pandemic.

________________________________________

I took the photograph in Maryland in December: abstract and complicated water, ice and reflections.

Medicare Disadvantage

Medicare Advantage plans, from for profit insurance companies, are being rebranded Medicare Reach.

They seem like a good deal. They are if you are healthy forever! So what is the catch?

In Michigan I go to look at a nursing home with a friend. The administrator shows us around. Small rooms with two beds. We also look at an assisted living. Much larger rooms, the friend can stay overnight in the private room with the parent, at a cost of $4000.00 per month. Her insurance will not cover it.

But back to the nursing home. The administrator tells us that it’s good that her parent does NOT have a medicare advantage or medicare reach plan. “It is nearly impossible to get the insurance companies to approve a rehabilitation stay at a nursing home.”

“Really?” I say.

“Oh, really.” She says. “The insurance companies certainly don’t want you to know that when you buy their “deal”.”

So, the for profit insurance companies want you if you are of medicare age and are well. BUT the catch is that they really don’t want to cover if you are sick. Think carefully before you buy a pig in a poke!

Physicians for a National Healthcare Program is working to stop the insurance companies from skimming profit off the healthier elders and then abandoning them when they are not healthy. I wish that the United States citizens would clue in, get mad, and vote for single payer! Write your congresspeople and put pressure on them! They listen to money but in the end, they live by votes. Make sure you look at the fine print, because the insurance company is there to make a profit off you, not preserve your health.

The picture is Mordechai, our plastic clinic skeleton, distrusting Profit-Over-Health Insurance Companies.

Long Covid and fatigue

Sometimes medical articles are SO IRRITATING! Like this:

Symptomatic Long COVID May Be Tied To Decreased Exercise Capacity On Cardiopulmonary Exercise Testing Up To Three Months After Initial SARS-COV-2 Infection

Healio (10/18, Buzby) reports a 38-study systematic review and meta-analysis “suggested with low confidence that symptomatic long COVID was associated with decreased exercise capacity on cardiopulmonary exercise testing up to 3 months after initial SARS-COV-2 infection.” According to the findings published in JAMA Network Open, “underlying mechanisms may include but are not limited to deconditioning, peripheral mechanisms, hyperventilation, chronotropic incompetence, preload failure and autonomic and endothelial dysfunction.”

Wouldn’t it be nice if they believed the patients?

Let’s break this down. What does it all mean? Ok, the “low confidence” irritates me because it implies that the physicians can’t believe the patients who say “hey, I am short of breath and have a fast heart rate and get really fatigued if I try to do anything!”

I have had my fourth bout of pneumonia with shortness of breath and tachycardia. This time, since I am older, I had hypoxia bad enough to need oxygen. This is the FIRST TIME that some physicians have actually believed me. They believed the pulse oximeter dropping down to 87% and below, with a heart rate in the 140s, but they did not believe me and some accused me of malingering, for the last 19 years. Can you tell that I am a little tiny bit annoyed? If my eyes shot lasers, there would be some dead local physicians. And I AM a local physician, disbelieved by my supposed peers.

Let us simplify this gobbdygook: “underlying mechanisms may include but are not limited to deconditioning, peripheral mechanisms, hyperventilation, chronotropic incompetence, preload failure and autonomic and endothelial dysfunction.” The way I think of it is that sometimes a pneumonia will cause lung tissue swelling. Ok, think of the air space in your lungs as a large balloon. Now the wall of the balloon swells inwards and suddenly there is half as much air space. Guess how your body takes up the slack? The heart goes faster and you have tachycardia. This is a very simple way to think about it. I have tested patients who complain of bad fatigue after an upper respiratory infection with a very simple walk test. 1. I test them at rest, heart rate and oxygen saturation. 2. I walk them up and down a short hallway three times. 3. I sit them back down, and watch the heart rate and oxygen saturation. I watch until they are back to their seated baseline.

A friend tested recently and his resting heart rate was 62. After walking, his heart rate is in the 90s. H does not have a pulse oximeter, but his oxygen level is probably fine. However, that is a big jump. He has had “a terrible cold” for 8 days. I would bet money that his heart rate normally doesn’t jump that much. He still needs recovery time and rest.

In clinic, I had people who were ok at rest but needed oxygen when they walked. We would get them oxygen. More often, they did not need oxygen, but they were tachycardic. When they walked, their heart rate would jump, over 100. Normal is 60-100 beats per minute. If they jumped 30 beats or jumped over 100, I would forbid them to return to work until their heart rate would stay under 100 when they walked. If they went back to work they would be exhausted, it would slow healing, and they might catch a second bacteria or virus and then they could die.

Patients did not need a pulse oximeter. I would teach them to take their own pulse. The heart rate is the number of beats in 60 seconds. I have trouble feeling my own wrist, so I take mine at my neck. It’s a bit trickier if someone has atrial fibrillation but the pulse oximeters aren’t very good with afib either.

When I have pneumonia, my resting heart rate went to 100 the first time and my walking heart rate was in the 140s. I had influenza and felt terrible. My physician and I were mystified. It was a full two months before my heart rate came down to normal. I was out of shape by then and had to build back up. If I tried to walk around with my heart at 140, I was exhausted very quickly and it also felt terrible. The body does NOT like a continuous fast heart rate and says “LIE DOWN” in a VERY FIRM LOUD VOICE. So, I lay down. Until I recovered. For a while I was not sure if I would recover, but I did. This time it was a year before I could go to part time oxygen.

The fatigue follows the heart rate. Tachycardia is not good for you long term. If the heart is making up for reduced air space in the lungs, it doesn’t make sense to slow the heart rate with drugs. You NEED the heart to make up for the lungs. You need to rest, too!

Blessings and peace you.

The photograph is Elwha, helping me knit socks. With the bad air from the fires and my still recovering lungs, I am staying indoors and knitting socks .

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.

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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.