chronic fatigue

I am realizing that I have had chronic fatigue since 2014. Or possibly 2012.

We know that chronic fatigue can be kicked off by infection. One in ten people with a severe infection is diagnosed with chronic fatigue. Severe stress can also kick it into gear or a combination of stress or grief or attack or assault and infection can kick it in to gear.

We don’t really understand it, though I am finding experience to be a very great teacher.

As far back as medical school and residency, I was curious about it. I love the edges of things: it is the things that we don’t understand that I study. I pick up bits of information like a crow or magpie. I add it to the pile of things related to it in my brain. Sometimes I will add just one more small piece and the entire pile of puzzle pieces with suddenly, in just a blink, rearrange itself into a picture.

The pieces won’t arrange themselves until I have a complete picture. Or, well, until something in my brain is satisfied that it is complete enough. Since nothing is every complete or completely understood, is it? Nothing fixed and we make up all the words.

Anyhow, chronic fatigue would explain why running my own clinic, I did not see more than ten patients a day. Also I do have some OCD, hidden under a messy packrat gene. You would NOT look at my house two months ago and think that I have some OCD. Messy and chaotic. But I am a precision demon about patient charts and I am always thorough. In 2009 our local hospital let me know that my reputation was of a brilliant diagnostician. Ironically, this was right before they fired me for arguing about the patient quota of 18 per day. I ran late because I could not stop being thorough. I cut my work from 4 days a week to 3.5 but that was still two hours of dictating and paperwork for every day of clinic. So clinic was 28 hours plus the dictating and paperwork and calling specialists and calling insurance and a one hour meeting at lunch with the administration EVERY DAY FOR MONTHS, so really clinic was 8 hours of patient contact plus the one hour lunch meeting. Redo the math: 28 hours plus 4 one hour lunch meetings plus 7 hours of the generated deal with stuff AND do not forget about call nights. 39 hours plus call. At least one call night a week, 6 pm to 8 am, so that is 51 hours or more. I felt that I was working flat out as fast as I could every single day in clinic and I still was not keeping up.

I also really really resented the one hour lunch meetings because I was only allowed 20 minutes for a patient and was to see them “for one thing”. Seeing people “for one thing” is unethical and dangerous because for example: a diabetic with a toe infection. That is already two things. But you’d better calculate the third: kidney function, because you have to dose the antibiotic for the toe based on the kidney function, and diabetes is the number one cause of adult kidney failure in the US. Oh, and you’d better check on the diabetes too, because if their blood sugar is whomping out of control, the toe won’t heal and that’s how they got infected in the first place. So I might have ranted a bit about seeing people “for one thing” because I think it is an UNETHICAL DANGEROUS LOAD OF CRAP. DO NOT PUT UP WITH IT, DOCTORS AND PATIENTS OF THE UNITED STATES. It is corporate trying to maximize profit and they can frankly go to hell and stay there. Single payer. ‘Nuf said.

Even more ironically is that two years after they fired me for vocally disagreeing with the quota (I would add that I was not diplomatic and I was vociferous), the hospital dropped the quota down. To what I had asked for, 16 patients a day. I actually had kept track through my career and knew that I averaged 16 patients a day. One partner usually saw 20 or 21, but the problem was that he kept the chart in his head. When I would get one of his patients, I’d have to say, “Um, you have some heart disease, right? You’ve had a heart attack or a bypass? What year was the bypass? How many vessels?” I’d be guessing from the medicines and clues… but the past history was not entered into the chart. So, yeah, I only saw 16 patients a day but my charts were solid and thorough and the charts on his patients were a lot more comprehensible every time I saw one of his patients and did the chart for him. He owes me. Pay up.

Anyhow, I have worked really hard for the last seven years, in spite of some chronic fatigue and fibromyalgia. Which I rather refused to admit to myself. I thought I was “well”. I felt bad that I didn’t clean up my chaotic house.

Now I forgive myself for the house. Because the truth is I couldn’t clean up the house. Not after 7-10 patients and running my own clinic, CEO, chief cook and bottle washer, dealing with the covid changes, trying to figure out medicare’s arcane language, fielding malpractice insurance, business insurance, insurance insurance and phone company scam calls.

I have been sick at home for 6 weeks. I have been on oxygen for 4 days? 5 days? I would have felt a lot better and been able to think better if I had been on oxygen the whole time. Meanwhile, turns out I CAN clean up and organize in spite of being hypoxic. My house is now a very different place and the garden has changed enormously very quickly.

I am sending more money to India, via https://www.pratham.org/ . I can hardly bear to think about the people who cannot get oxygen. It feels terrible and terrifying to not be able to breathe. My chest hurt and lungs and heart when I even sat up, much less walked. If I walked slowly enough, it was bearable, just barely. I walked anyhow. Those edges, I am always there.

It is very weird being on oxygen. I have told people in the past when I had pneumonia. I’ve almost died from it four times. Heart rate of 135 holding oxygen level, but it doesn’t feel good. I am confident that I do not have coronary artery disease, because if I did, I would have had a heart attack the first week. A heart rate of 135 is running a marathon. It is exhausting. Right now on oxygen, my heart rate is 86 and oxygen at 98%. My normal heart rate is more like low 70s. Normal is 60-100, you knew that, right?

It is very weird being on oxygen. Because now I have a visible signal that I have been/am sick. Somehow this is making people more kind, more concerned. I keep thinking, but I told you I was ill before. Why does being on oxygen make people kinder?

I think that is the difference between having an illness where there is not much comprehension and one that we think we understand. So chronic fatigue and fibromyalgia are dismissed, disrespected and discriminated against, while cancer and sepsis and covid-19 and massive trauma in the military are supported. People send gifts.

In the past, tuberculosis was thought to be an illness of sensitive poets. Then the tuberculosis bacillius was discovered and it morphed into a disease of the poor dirty overcrowded low scum of humanity. My mother had tuberculosis, but luckily it was when we’d moved on to sanitoriums, because it is airborne, so stop the spread and take care of people. There was also medicine. My mother had to take 36 pills a day. At one point in the hospital, someone brought her a medicine.

“What is it?” asked my mother.

“Don’t worry about it.” said the nurse.

“No,” said my mother. “I want to know what it is.”

The nurse got the doctor. He came in and said, “Take the pill.”

“What is it?” said my mother. She was 22, 8 months pregnant, very poor, and a student at the University of Tennessee.

“Don’t worry about it.” said the doctor.

My mother threw it at his head. Because not only was she 22, 8 months pregnant, very poor and a student at the University of Tennessee, but she was also the daughter of F. Temple Burling MD, a psychiatrist, physician and professor at Cornell University.

And he had told her, don’t take anything unless you know what it is…..


________________________________________________________________

The picture is of my mother, Helen Burling Ottaway, in 1945. Helen Temple Burling II at the time of the picture.

________________________________________________________________

I think the final straw that made the hospital fire me was me singing “The 18 Patient Blues” which I’d made up, to the tune of 16 Tons, into the Chief Financial Officer’s voicemail and at the open mike at the Upstage, here in town. I admit, it was not diplomatic.

broken

I wrote this poem in 2014. Sometimes you know things without knowing them. Or you know them before you are ready to know them and so…. you forget.

broken

I think you said
“Break her.”

And you told them how.

You told them my weaknesses
and my strengths.

You told them that I twisted your words.

You said, “You twist my words.”
K said, “You twist my words.”
S said, “You twist my words.”
Ko said, “You twist my words.”

and on everything2
they, too, twist my words.

Twist
twisted
fisted.

When the outer is charming and perfect
the damage is inside.

I wear my spikes on the outside.


No one, to date, has been allowed more then
visitation rights
inside.

No one except
you
and my children
and all children.

Only they are allowed inside.

Twist
twisted
fisted.

I am broken.

But I was always broken and knew it.

I hope that no one cut their hands
when they tried to smash me.

Pretty on the outside
deadly on the inside.

Yet I think a spark in you said,
“Break her.”

What you didn’t tell them
is that I don’t bother to lie
because no one listens anyhow
no one ever listened
and so I can always tell the truth
until they stop listening.

because they don’t believe me

but you knew

I tell the truth

And I was already broken.

8/22/14

And this should connect to this: https://drkottaway.com/2014/11/

Tired

Yes, so the picture is me during Family Practice residency at OHSU. Also a friend, visiting, a fellow graduate from Medical College of Virginia. She looks alive. This pneumonia is making me feel like that picture. I started internship and residency with a six month old. We would wait until 9 pm for his bedtime or sometimes he wouldn’t see me.

One night I was trying to give him a bath, after a day and a night and most of another day on the obstetrics rotation. I had to call my husband to come help, because I could not stay awake by the bathtub. Safety first.

When I had a really bad call night and then ran around the next day trying to get everything done so I could GO HOME, I could not stay awake until my son’s bedtime. So he would put me to bed. By age two he would tuck me in and babble a story and dad would turn out the light…..

I would come home from the day and a half working, just exhausted and my son would be doing something new. “When did he learn to CRAWL!!?!” I would say.

“Oh, is he crawling?” my husband would say. “I don’t know. Didn’t notice.”

RRRRrrrrrr.

When my son started two word sentences around age two, we would ask him questions. “Where does T live?”

“Pink house.”

“Where does daddy live?”

“Pink house.”

“Where does mommy live?”

“Hospital.”

I went and had a tantrum at my residency director. I was so mad at the faculty. My son thought I lived at the hospital. He was right, too. I was pissed and stomped around like a honey badger, wanting a cobra to fight. The faculty ducked into closets and bathrooms…… I gave them hell.

My kids are doing well in spite of mom living in the hospital. Though they acted out some, as normal kids do. A few years ago I asked my daughter, “Where are the barbies?”

“Hmmm.” she said.

I eyed her. That noncommital noise gets my attention.

She shrugs. “Ok, well. T and his friends and I blew them up with firecrackers. In the driveway. When you weren’t home.”

“Hmmm,” I said.

“We did not blow up the Get Real Girl because we knew that would piss you off.”

“Mmmm-hmmm.” Yes, it would.

So I wonder…. what else were they up to? How did the ceiling tiles get broken in the finished basement? There are various other mysteries…. if the house could talk, it would tell me.

The barbies came up a few days ago. “Didn’t you blow up any action figures? Aka Boy Dolls?”

“No.” said my daughter.

“That’s kind of sexist.” I said.

“Hmmm.” she said. And my son just laughed.




stealthie in the grass

Stealthie in my yard, two days ago. I like the current crop of grass and weeds.

Music: Simon Lynge Hallelujah: https://www.youtube.com/watch?v=iIHpeaHJJ9s

His website is here: https://simonlyngemusic.com/. Hey Simon, when do we get another local concert? Concert in the grass? Hugs, ya’ll.

myalgic encephalopathy

Myalgic Encephalomyelitis, actually. I put encephalopathy on the Ragtag Daily Prompt, but …. my brain is still a bit fuxxy. Yeah, tried to type fuzzy. It’s sometimes annoying and sometimes funny. I have a little trouble with my balance, as if my proprioception is not quite working right. I have not fallen, but that is really my dance chops. All those years jitterbug dancing, I recover my balance very well. However, I am staying off of ladders for now.

The antibodies are annoying. The dopamine ones are down a little, which is a relief. I still spent 20 minutes this am organizing CDs into categories. This satisfies both the ADHD and the OCD bugs. I have four categories: women musicians, rock and blues, classical/ethnic and local/folk. Sometimes I don’t know where the hell to put a CD. Southern Culture on the Skids… hmm. Harry Connick jr…. double hmmm. I now have a pile of movie soundtracks and a pile of DUNNO. I have picked up CDs at garage sales when they are a dollar each. Random. Those are in a separate “listen to it and decide” pile. They could end up in the library box outside if I dislike them enough. There seems to be some rap, I don’t have tons of that. Punk, now, it gets filed with the rock except when it’s more Americana…..

I can lower the antibody levels with a hot bath. Tend to wait until I really have to eat, eat, then with the antibodies start poking me I have the hot bath. A sauna would help as would a hot tub. Dang. Where is my hot tub? I hurt a lot more if I eat gluten or get my blood sugar high. Sugar is bad. Rice is pretty ok, though muscles hurt afterwards. I’ve long since trashed my glycogen stores, so my blood sugar will drop back to ketosis within 2 hours instead of taking 2-3 days. Feels terrible while it is happening. I get really cold and achy and just feel like I am dying. Lie down, wrap up in a really warm pile of blankets. I feel the shift: lights get brighter, sound gets louder and the pain switches off. Then I get too hot and throw off the blankets and have some energy again. I still have to behave: any little thing like starting to trot up the stairs and OW, my chest starts hurting and I get short of breath. I am a little short of breath just being vertical. I am glad I am not bad enough to have to just lie in bed, that would fungking suck.

Hope you are well. Get the covid vaccine: it may well make you feel rotten, but covid 19 does the same thing only more so. I think that if I got covid 19 I would croak.

Ribbit.

Peace be with you.

The introverted thinker on the playground

My daughter is an introverted thinker. Sometimes this is extremely entertaining.

When she was in first grade she came home part way through the year and said, “I want to get my hair cut like a boy.” “Short?” I said. “Yes,” she said. I didn’t think about it too much but made an appointment. I thought it was because she has that fine tangly hair that is really difficult to comb.

On the way to the salon, my intuition kicked in and I realized that something was up. She was in that deep abstraction mode, thinking.
I said, “Why do you want to get your hair cut like a boy?”
Her reply, “The boys chase the girls on the playground.”
Hmmmm.
“Do they chase you?”
“No.”
“Why not?”
“They are not sure if I am a boy or a girl.”
“You don’t want them to be sure?”
“No.”
“Why not?”
“There is another class that gets to recess before us. They get the tire swing. They have a club that is all boys. They won’t let us use the tire swing.”
“You are going to fool them. Okay.” I sat back to see how she would proceed with whatever plan she had regarding the tire swing.

She had her hair cut very short. The next morning she chose hand-me-downs from her brother. A rugby shirt, a navy blue sweatshirt, flannel lined thick jeans and his old hiking boots. She had never worn any of them before and her usual preference was pink. I took her to school. She went into her class and just went to stand by some other children, not saying anything at all. They commented on her haircut.

I went to the principal and described my daughter’s plan, mostly because I thought it was quite brilliant. He said, “Oh, we have to do something about this.” I said, “I wasn’t trying to get anyone to interfere.” He said, “No, but we have a playground policy. They are allowed to have clubs, but they are not allowed to exclude anyone. In other words, no ‘boys only’ clubs. We will hold an assembly to remind them.”

So for a seven year old introverted thinker on the playground, a problem required careful thought and a plan, which she then carried out. I liked the approach of challenging gender. As far as I could tell it did not occur to her to ask for help. I do wonder at times what other plans she is implementing.

She did get to use the tire swing. Then she went back to wearing pink.

cereal mean stupidity

Some people act mean. Not only do they act mean but they are cereally mean. They are mean about cheerios, about count chocula, about granola, about oatmeal.

Not only do they act mean, and cereally mean, but stupidly mean.

They are stupidly mean because they heard that you like cheerios. It doesn’t matter if you actually do or don’t like cheerios. Someone told them that you like cheerios, they think cereal is sinful and you are LABELLED. They have you labelled as liking cheerios and you are a sinner.

And it doesn’t matter what you say or do. You can say “I don’t like cheerios.” Yeah, they don’t believe you. They think that maybe YOU EAT CHEERIOS when no one is looking, behind curtains, in the basement. They did a search on the internet and you bought Cheerios in 1997. You are a sinner.

You can show photos of your breakfast. “Look! Yohgurt and raspberries!” Doesn’t matter. They whisper, she eats cheerios in secret. You are still a sinner and you are a sinner and a liar.

You can be an upright citizen for years, join the Rotary, volunteer, donate money. Doesn’t matter. The whispers circle back to you: cereal.

So finally you figure it out: fungk them. You do not have time in your life for cereal mean stupidity. You put those people on ignore and leave them there. You cheerfully help if they have a flat tire or appendicitis. You commiserate when they complain that they are miserable. Well, actually, fungk that. Your goal if they call is: get off the phone. “I got a pan burning on the stove, I gotta go to the bathroom, I gotta trim my nosehairs…” Anything but talk to one of them. Because your life is a lot of fun, once you stop trying to change their minds.

And it doesn’t have to be cereal. It can be bipolar disorder or race or politics or the country you are from. Cereal mean stupidity is rather rampant. We have the choice to ignore it and live with more joy than ever.

Peace out.

Covid 19 long term and PANDAS

It is not looking like I will be able to return to medicine. Based on the current research, the PANDAS reaction will get worse with each infection. I will be moving in to a hamster ball next week, (*&^*&(*&*&^.

You, gentle reader, can work your way through the research, which I am going to present to you. You have no reason to do this unless you have chronic fatigue, fibromyalgia or myalgic encephalopathy or post covid syndrome. Or you know someone with one of those. I think there are a few people out there.

First, read the guidelines for treating PANS/PANDAS.

https://www.pandasppn.org/guidelines/
https://www.pandasppn.org/jcap2017/

The article about the three antibodies involved is in this section:
https://www.liebertpub.com/doi/full/10.1089/cap.2016.0148

“Evidence for group A Streptococcus (GAS)-specific cross-reactive antibodies having affinity for neuronal components (including receptors) in the basal ganglia has been demonstrated in human and animal studies (Husby et al. 1976; Kirvan et al. 2003, 2006a, 2006b, 2007; Hoffman et al. 2004; Yaddanapudi et al. 2010; Brimberg et al. 2012; Lotan et al. 2014). Sera and immunoglobulin G (IgG) from SC and PANDAS patients known to bind to components of the GAS cell wall have also been shown to cross-react with components of neurons in the basal ganglia caudate, putamen, and internal segment of the globus pallidus (Kirvan et al. 2006b). Antineuronal IgG antibodies binding to multiple targets, including lysoganglioside, tubulin, and dopamine receptors, have been reported to be elevated in patients with SC and PANDAS compared to controls (Kirvan et al. 2003, 2006a, 2006b, 2007; Cox et al. 2013, 2015). Targeting of such antibodies to dopaminergic neurons in the substantia nigra and ventral tegmental area in the basal ganglia (as well as other cortical neurons) was confirmed in transgenic mice expressing a chimeric antineuronal autoantibody containing VH±VL regions cloned from a patient with SC (Cox et al. 2013).”

All right, three antibodies. So WHAT, doctor?

The antibodies are to dopamine, tubulin and lysoganglioside.

Here is an article looking at chronic lyme disease.

https://www.sciencedirect.com/science/article/pii/S2666354619300158

Basically that article looks at four groups. No lyme disease, one episode, more than one and chronic. No dopamine antibodies. But the tubulin and lysoganglioside antibodies are not present in the healthy folks and are present in the lyme folks, highest in the chronic lyme. Those two antibodies are associated with chronic fatigue (the tubulin) and fibromyalgia/gluten and sugar intolerance (the lysoganglioside).

Now wrap your head around that one in ten severe infections can trigger chronic fatigue. ANY INFECTION. I am normal, I just bloody well got antibodies early because my mother had tuberculosis through the whole pregnancy. So I was born with PANS. Then, smartied that I am, I chose to be a physician, meaning I get exposed to infections. Guess I am not going to be doing Doctors Without Borders, right?

Treatment, well, that is complicated. I think it depends on the person’s profile: which antibody is giving them the most trouble. I am a special case, because I have all of the antibodies firing full bore at once. Which has forced me to be extremely creative about how to survive this now and in the past.

First off for the treatment: DO NOT PUSH THE CHRONIC FATIGUE. Because the tubulin is damaging not just skeletal muscles but the heart muscle as well. So even with squeaky clean coronary arteries, pushing through the chronic fatigue could trigger a heart attack or broken heart syndrome. And we aren’t (yet) measuring these antibodies routinely. Hell, I hadn’t heard of tubulin since the distant mists of college until 2 weeks ago.

Secondly: if there are neurological symptoms, that is, any two or more of manic/word finding difficulty/ADHD/OCD/emotional lability/oppositional defiance/clingy/brain fog/yeah I forget the rest, then the anti-dopamine antibodies are present. In addition to speeding the thoughts, I think that they speed cell metabolism. I always drop ten pounds the first week. So, vitamins are vital. If your vitamin K drops, you may clot. Also vitamin D for teeth and vitamin B12 — if it’s low you can get Guillain Barre. The myelin sheaths unwind. Ok, that could also be thiamine or folate or all three. Bleeding strokes from low vitamin K.

Third: I don’t know if it’s just me, but the things I have to change in my diet are NO SUGAR and NO GLUTEN. I tried rice yesterday and it was ok, so I think it’s gluten and not just all bread/rice/potatoes/pasta. I have mostly been eating meat or cheese with kale/collards/mustard greens/parsley or turnip greens. All of which are vitamin rich. I have not had bread in three weeks and have been not even eating much fruit. Blueberries and grapefruit are safest. In two of my bouts of this, with strep A pneumonia, I would have fluid shifts when I ate sugar or gluten. Normal urine output is up to 2 liters. I had 10. That was documented in a 24 hour inpatient observation, though the doc did not actually notice. I did. I also figured out how to get it to stop, by stopping carbohydrates as much as possible. Greens only, because they are food sources of vitamin K. At any rate, it’s worth a try for other people. I use electrolyte tabs with fluids too, NUNN tabs or Airborne.

There’s other stuff. But I am tired and my chest hurts. Take care of yourself and each other.

TITANIC

I am doing the three day AAFP (American Academy of Family Physicians) physician wellness conference.

Here: https://www.aafp.org/membership/benefits/physician-health-first.html

I think it’s going to be TITANIC.

For the Ragtag Daily Prompt: TITANIC.