Category Archives: tears

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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.

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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 VHΒ±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.

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The Brewer’s Big Horses

This is one of the Songs to Raise Girls, songs that I learned before Kindergarten. A very weird list of songs.

This song comes from my maternal grandfather. My mother said that it was a Congregationalist temperance song….

The photograph is Morris D. Temple and his grandson, F. Temple Burling. F. Temple Burling is my maternal grandfather. I am related to Temple Pumps. According to my mother’s stories, Morris Temple was more interested in Japanese art than in Temple Pumps and the company eventually folded. I don’t know if that is true, or if it was a different Temple then Morris. However, my middle name is Temple.

This song is one that I don’t have memorized, though I know the tune. I have my mother’s handwritten lyrics, with her drawings framing it. There is a tape of my grandfather singing it in the Library of Congress, according to my mother. I would like to go listen to it some time.

I’ve copied it just how my mother wrote it out. There might be an issue about political correctness, but I have a picture of Morris Temple in the 1860s, in his civil war uniform, with a sword. You will have to wait for that post to see which side he fought for….. I presume that my mother wrote it down as she was taught it. I am not sure who talked like this in Iowa in the 1880s, but maybe it was most people.

The Brewers’ Big Horses

O, the brewer’s big horses, comin’ down de road
A totin’ along old Lucifer’s load
Dey step so high and dey step so free
But them big horses can’t run over me

Chorus:
O no! boys O no!
De turnpike’s free where ever I go
I’m a temperance ingine don’t you see
So them big horses can’t run ovah me
Repeat with “toot toot toots”

O de liquo’ men been actin lak de own de place
A livin’ off de sweat o’ de po’ man’s face
Dey’s fat and sassy as dey can be
But deir big horses can’t run ovah me

Chorus

I’ll harness dem horses to de temperance cart
I’ll hit ’em with the gad fo’ to give ’em a start
I’ll teach ’em how fo’ to haw an’ gee
So them big horses can’t run ovah me

Chorus

It took me a while to find this song on the internet. It is listed in temperance songs in wikipedia: https://en.wikipedia.org/wiki/Temperance_songs and is mentioned in The Christian Advocate under lyrics: The Brewers Big Horses. It is listed as written in 1913 by JB Herbert and HS Taylor. Isn’t it interesting that Budweiser still uses the Brewer’s Big Horses in advertising?

Again, this is a song I was learning way before I know what a brewer or a turnpike was. My parents stopped singing a bunch of songs when they realized that I was memorizing all of them. They did not want me singing certain songs in Kindergarten.

They did not need to worry. I shut up when I got to school, because no one wanted to sing and no one knew the songs. They all talked about television and we didn’t have one.

I was very disappointed in school. Not enough singing and it was lonely.

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biotics explained

Are you confused about BIOTICS? Is your neighbor taking more Mysterious Healthy Pills than you? We can help! We are marketers posing as scientists from Mega Super Good For You and the Planet CoreValuePoration! Look! We have white coats and ours are clean!

PROBIOTICS: These are GOOD and GOOD FOR YOU! You should take them, you should take ours! We have capsules and we stuff them full of good-for-you biotics. We don’t call them bacteria, because bacteria are gross and yuky and cause infections. You know ours are best because they are the most expensive, the health food co-op sells them, and they have to be refrigerated. Take one everyday! You can never have too many biotics in the teaming mass of millions in your gut!

Conbiotics: These are BAD FOR YOU! They are sold by the other companies. They lie. They get biotics from prisoners poop. They will turn you criminal. They will make you fight with your mother and disinherit your first born, lie, drink too much and cook meth. You will know they are conbiotics because they are cheaper and not refrigerated. And some of the biotics in their tablets are bacteria! Do you want to take bacteria? DEAD BACTERIA, they don’t even give you live ones.

Antibiotics: THESE KILL PROBIOTICS. BY THE MILLIONS. THESE ARE PASSE, OUT OF FASHION, EVIL AND YOU REALLY DON’T WANT THEM (unless you have strep throat or pneumonia or sepsis, and even then, the antibiotics suck because the sepsis mortality rate is 28-50%, THAT MEANS HALF THE SEPSIS VICTIMS DIE EVEN WITH ANTIBIOTICS, DOES THAT PROVE THEY SUCK OR WHAT?)

UNCLEBIOTICS: Now MEGA SUPER GOOD FOR YOU AND THE PLANET COREVALUEPORATION is developing THE NEWEST AND BEST BIOTICS OF ALL! UNCLEBIOTICS ARE BETTER THAN ANTIBIOTICS BECAUSE THEY ARE MALE AND UNCLES ARE MORE FUN AND RARER THAN AUNTS AND THEY ARE WAY LESS LIKELY TO HUG YOU INTO WEIRD SMELLING BOSOMS, except that uncle that wears the boa and the weight lifter uncle, too many illegal steroids, he has fine manboobs.

SUBSCRIBE TODAY TO OUR MONTHLY POOBIOTIC, WE MEAN PROBIOTIC SERVICE AND YOU WILL RECEIVE FREE SAMPLES OF UNCLEBIOTICS AS FAST AS WE CAN GET THE UNCLES TO POO AND THE RATS TO SURVIVE THE CAPSULES.

All ingredients generally recognized as safe http://www.fda.gov/Food/IngredientsPackagingLabeling/GRAS/, you should listen to us, don’t listen to your mama, she says “Don’t eat poo!” but what do mamas know, Mother’s Day is so OVER for the year and we have WHITE COATS!

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Deep Vein Thrombosis

Our clinic had a band back before 2009. Me and 4 of the nurses. We were into heavy metal. This was when I was working for Port Townsend Family Physicians. The county let me go and PTFP changed their name. Could not have been because we wore our band regalia to work, right? After all, it was Halloween.

Maybe they were afraid that the songs would catch on.

Little blue pill

Don’t code in the waiting room

Evidence based BM

Probiotics make you psychotic

Better that way

Alcohol is better than benzos

Mr. Sable is Unable

Buprenorphine: better n morphine

EMR means Eat My Rear

The 18 Patient Blues

Idaho Gigolo

I played flute and saw. J played fiddle and air siren. The others, well, you should ask them. I think all the tapes got burned by the hospital. Too bad, so sad.

I can’t credit the photographer. I don’t know who took it.

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The dead are with me

I am at the lake. There are younger people with me. We go to the graveyard. The earth is soft and loose. There are no markers or stones. We do not need them.

“I can feel the people in the earth.” says one of the younger people.

“Me too!” says another.

“Of course.” I say. I name the people under the earth and introduce them. The young people are amazed. I am surprised that they have never felt the dead. I think the cities and concrete and phones and television and computers: all of these must block the signals. But we never allowed electricity here. The phones don’t work. Candles, aladdin lamps, propane stoves and heat with wood in old cabins. Thin shacks where we hear the wind and water, and tents, lying in the embrace of the earth.

We leave but when we come back, the young start to reach down into the soft earth, arms length. “Did they die young?” one asks. “We want to know more.”

“You must be patient.” I say. “Don’t push the dead.”

Later I return a third time to sit quietly alone with the dead. Dark falls, moonless, overcast, no stars. I stand to return to the cabins and my flashlight dies. I know the paths well, but not the path to the graveyard. I tie up my long skirt and kneel. I feel the ground gently. Yes, I can feel the path. I start to crawl slowly, stopping to feel the packed worn earth. I think of wolves and cougars but none have been here for years. It is not cold enough for exposure. It is just dark and slow. The dead are with me and approve.

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Advice to young people

My biggest piece of advice to young singles and young couples is: put half of each take home salary away. Married or not married, and I don’t care how committed you are.

I know people who lose their house when one half of a couple is sick, and the other can’t pay all the bills on one salary. We don’t want to think about illness or cancer, but it happens. Young parents, with one very ill and the other with a job, children and a sick spouse. Having a reserve is way more important than keeping up with the Joneses, unless you happen to inherit like Mr. Trump.

If you each put half of your take home salary away, then when life throws surprises at you, you will have a reserve. A big reserve if the surprises hold off for a while. Divide that half into retirement and half into money that you have access to in emergencies.

I listed the top ten causes of death in the US in 2012 here, but lets look by age: http://www.cdc.gov/injury/wisqars/pdf/leading_causes_of_death_by_age_group_2012-a.pdf.

From age 1 to 44 the top cause of death is accidents, unintentional injuries.

Suicide is second from age 15 to 44.

Cancer takes over as number one, malignant neoplasms, at age 45 to 65.

After 65, the number one cause of death is the heart, and that is where the biggest numbers are. But if a younger cause of death affects your family, it feels unfair, wrong, as if we all expect to like to age 78 or beyond.

Untintentional injury, that is, accidents, are broken down here:Β http://www.cdc.gov/injury. When I do physicals on teens, I ask them what the number one cause of death is for teens. They all know the answer, even if they have to think for a moment: motor vehicle accidents.

But lets look at accidents in the age 25-65 age group: poisonings. What? Poisoning? And NOT intentional…. what is going on there? It is drugs, legal and illegal, but more legal. Sedating drugs in combination are effective at sedating people enough to stop breathing and die. Alcohol with benzodiazepines (valium, ativan, etc.), opiates and opioids, sleep medicines such as ambien and sonata, withdrawal from methamphetamines, cocaine, crack….people die. And supplements may be contributing as well.

75 years of US mortality data: http://www.cdc.gov/nchs/data/databriefs/db88.pdf#x2013;2010%20

At birth now in the US the life expectancy averages 78, but not everyone reaches that….some people still die younger and some live longer.

The age of death is rising, world wide. In the US, many of us have a world envied standard of living and yet we have a significant number of people who are anxious and depressed and way too high a rate of substance abuse, alcohol, opiates and opioids, benzodiazepines and yes, marijuana is addictive. How do I reconcile this? How do you reconcile this?

Keep your reserve, young singles and young couples…..

http://www.worldlifeexpectancy.com/usa-cause-of-death-by-age-and-gender
As of the day I am writing this on 5/2/16:

POPULATION
318,857,056

Numbers to be corrected, first set was wrong, wrong, wrong.

I took the photograph yesterday evening: there were the most amazing Maxfield Parish clouds…. life and death are a mystery.