Over KwanChunChrisSoliday, we discuss bicycles. We now have a plethora of electric bicycles, so we need a phrase that describes the “old” style bicycle. We came up with acoustic or analog. I like acoustic bicycle, because it sings.
My friend B-from-Arlington (BfA): “But they don’t make noise.” He didn’t approve of either idea.
“Well, we had spoke bells, and playing cards. My bikes make noise.” Sometimes it’s me making it.
We are riding on a rails to trails path in Northern Virginia. Seven of us and me on oxygen. It’s only my second bike ride since March 2021, when my lungs fell apart. We are all on acoustic bicycles.
I feel pretty strong for most of it, 14.5 miles. It seems flat, though it is a very gentle downgrade, until the last 0.5 mile, which is gently up hill. Oh, my lungs don’t like that bit at all and by now my muscles are saying Why are we doing this? I am relieved when we get to the coffee shop destination. Three of us will stay there, while the other four will ride back and get the cars. I hang out with K-f-A, BfA’s spouse, and their son. Their son examines my phone, asks why it has four camera eyes. I have no idea, so he proceeds to figure it out. We play with the slow motion camera for a while.
We know what a penny farthing is, and safety bicycles and tricycles. The early safety bicycles did not have brakes and had wooden rims and wooden spokes. My brother outlaw has one, from the 1880 or 90s. Another friend collects penny farthings and has one that is entirely of cast iron. It would be a little bumpy and the seat is pretty hard. It is also massively heavy. So now we add acoustic bicycles to the electric ones.
I was thinking about masks and the whole “masks don’t work” or “masks are unproven*” thing. That is complete and utter crap. We proved masks work YEARS ago.
If they don’t work, do you mind if your surgeon don’t wear one? What about your nurse with a cough when you are in the ICU? I think we have proved quite definitively in the operating room that masks work.
Also, your family doc and OBgyn ain’t gonna NOT wear a mask when delivering baby because it can be REALLY SPLASHY. And some patients who are delivering a baby have hepatitis B or HIV or hepatitis C or whatever. WE DO NOT WANT TO CATCH IT SO WE WEAR MASKS. MASKS WORK.
And take tuberculosis. Tuberculosis bacillus is tiny and can be air borne, if you have active tuberculosis and cough. We use reverse flow rooms in the hospital with an airlock: a door to a small entry room, that has to close before you enter the inner patient room. And the air is slightly lower pressure so that air comes in from the airlock but doesn’t flow out. All the air out of the room is filtered to catch and kill the tuberculosis bacillus. We go in the airlock and put on nearly full gear: gown, gloves, mask, hair covers, shoe covers. When we come out, we take it all off in the airlock. We also keep a stethoscope in the room so that we don’t carry infection from patient to patient.
So the whole anti mask thing seems categorically insane to me.
Like, didn’t we figure out masks work back before the civil war? Or thereabouts. No, maybe later than that. Without masks and gloves we had all the women with post baby fever, who died like flies and most people died of infection after surgery. Until that coke addict at Johns Hopkins made people wear clean clothes and wash their damn hands before each surgery and wear gloves. Suddenly people survived post surgery at a much higher rate. Everyone came to train with him to imitate him. By 1897 everyone was wearing gloves to prevent infection. And so a brilliant coke addict invented medical residency, which is why residents are not allowed to sleep. We’ve gotten over that a bit.
Anyhow: masks work. Think, people, think.
*Usually the unnews qualifies this as “masks are not PROVEN to work with Covid-19”. What, you want a ten year clinical trial first? Are you crazy? And the resounding answer is “YES! We are crazy!”
Yes, well, PANS rather than PANDAS. PANDAS is just a cooler acronym. Who wants a syndrome named after a kitchen implement? Not me. And probably tuberculosis (my mom’s) was the initial insult and then I was one of those kids who gets Strep A at least yearly. My daughter too, but my son only had Strep A once.
This is actually Pseudoautoimmune. That is, the antibodies that show up to Strep A attack parts of ourselves. It buggers up the acronym so they are not calling in PPANS. Yet. And eventually they will have to drop the Pediatric, so then it’s back to PANS. Oh, well, I can live with a stupid acronym.
My current theory is that the four antibodies that they’ve found so far are an interesting back up crisis system. Either stress or infection can set them off. Once the antibody levels are high, a person gets
1. Either brain fog or some variation of ADHD/OCD/Manic-depressive/TICS/Oppositional Defiance/etc. The brain fog can be labeled depression or memory loss, partly depending on the age of the person.
2. Muscle weirdness: either super strong/super endurance or slow twitch/fast twitch/both muscle dysfunction. With slow and fast twitch muscle dysfunction, theoretically that would be a source of at least some of the chronic fatigue. Chronic fatigue pretty much happens over night and is triggered by one in ten severe infections and/or stress. Though possibly more with Covid-19. The latest estimates are 30% of everyone infected has some form of Long Covid.
3. Anti lysoganglioside. I am still studying lysogangliosides. They lyse ganglions. In theory if this blocks the lysogangliosides, there could be a higher risk of cancer. If the ganglions are lysed more, well, more brain dysfunction and memory loss. I also noticed that I had tremendous muscle pain if I ate the wrong things. This could then be the mechanism for some of the fibromyalgia people.
How to fight this?
It’s not going to be popular in medicine, particularly allopathic, because the main treatments that I can think of are NOT DRUGS.
1. Look for infection and treat it. Penicillin is cheap. High dose if the person doesn’t respond. I don’t look septic when I am near septic: no elevated white blood cell count and no fever. It’s the urine output multiplied by 5, that is, 10 liters instead of 2 liters in 24 hours, that is the clue. This time I did not get to that point and it was milder. Though I need oxygen.
2. Quiet the immune system. Teach the slow breathing that we are using for chronic pain and our anxious people and PTSD veterans. Going from the ramped up hyper crazy sympathetic nervous system state to the quiet relaxed parasympathetic nervous system is a skill that I think anyone can learn. The immune system calms down in the parasympathetic state and antibody levels will drop. The naturopaths want to give tons of pills (that they sell from their clinic or get a kick back from the on line company) for “immune dysfunction” but most of it is crap. Yes, crap. So the naturopaths won’t like this idea either.
3. For the anti lysoganglioside, I’ve treated this by changing my diet. When my antibodies are high, I have to keep my blood sugar as low as possible which means I go keto. As the antibodies come down, I can add foods back in. I am eating everything now except gluten. The gluten is annoying but Things Could Be Worse. Lots worse. This time I figured out that gluten, fructose and sucrose were culprits but not lactose and as I get better rice, potatoes and corn are fine. I dislike soy and always have, except for soy sauce and tamari. Tofu tastes like squishy cardboard to me, yuk. The gluten thing may get better, but since it appears that the baseline of the antibodies rises with each infection/attack, it might not. I will ask for celiac testing in January if I haven’t improved by now. I am not a “bad” celiac who gets terrible symptoms if there is a whiff of gluten. A little doesn’t bother me. French toast two weeks ago brought back the diverticular symptoms and kept hurting for a week. This did motivate me to hold off on gluten. Especially in the holidays and traveling. Again, everyone makes different antibodies, so the food patterns could be highly variable in different people. How very very interesting.
4. Treat the psychiatric stuff. If antibiotics and slow breathing and other parasympathetic exercises don’t help the person, then add the psychiatric drugs. But I’d try the above three first, unless the person is suicidal or threatening others. I am a drug minimalist. Eat food, exercise, have friends, work some, play lots and avoid pills. Including vitamins and supplements.
And that’s the basic plan for treating PANS. The symptoms of Long Haul Covid-19 bear a strong resemblance to my four pneumonias: brain fog or psychiatric problems, shortness of breath, fatigue, muscle pain. Therefore I would try similar treatments which may help some people with Long Haul Covid-19, chronic fatigue and fibromyalgia.
You finally feel safe, on a bed, they will save me, you think.
The nurse is on autopilot. He does not seem concerned. You are shaking a little as he arranges you on the bed. He puts the heart monitor stickers on and hooks you up. Blood pressure cuff, pulse ox. Blood pressure is fine, pulse is a bit fast, at 110.
You notice he is not making eye contact.
“I’m cold.” you whisper.
He doesn’t reply. He keeps messing with the wires. He puts the call button next to your hand. He leaves and returns with a warm blanket. It feels wonderful. He doesn’t say a word.
You feel better under the warmth.
The respiratory therapist wheels in the ECG machine. You smile at her but again, no eye contact. She puts more stickers on you. “Hold a deep breath.” The ECG spits out. She takes it and leaves.
The radiology tech wheels the portable xray machine in. You watch his face but don’t bother to smile. He looks everywhere but at you. It’s a bit creepy. Are they all robots? It’s 3 pm, not 3 am. “Lean forward,” says the tech, putting the radiology cartridge behind you. “Take a deep breath and hold it.” He takes the cartridge and leaves.
The nurse is back. Puts in the iv and draws 5 tubes of blood. You are shivering a little. He doesn’t seem to notice. You think about another warm blanket. The iv fluid starts and you can feel it running cold into your arm.
There is a child crying in the ER, in some other room. You start noticing the noises. Machines beeping. People typing on computer keyboards. No one is talking. The kid gives a howl of protest, rising and then is abruptly quiet.
Your hands and feet are tingling and burning. You writhe a little under the blanket. Sensation is returning to your hands and feet. It hurts but it is also good. You were at the point where all your feeling had shrunk to a tiny spark in the center of your chest. As the iv fluid runs, feeling slowly spreads out from that.
The doctor comes in. Grumpy, clearly. “Lean forward.” Listens to your chest. “Sounds clear.”
“It’s been hurting for 5 days. It hurts to breathe. Burns.” You are anxious as hell. BELIEVE ME.
The ER doc gives a little shrug. “Oxygen sats are fine.” He does a half-assed exam. He leaves.
You look at your feet, taking your socks off. Because he didn’t. There are two black spots, a couple millimeters across, old blood. Those are new.
You press the call button.
Time goes by. The nurse floats back in.
“Look. Tell the doctor to look. These are petechiae.” You point to the black spots.
If the nurse had laser vision, your feet would be burned. The nurse glares at your feet. He goes out.
The doc comes in and looks at your feet.
“They are petichiae. I have an infection.”
He gives a tiny shrug. “Your chest xray looks clear. Your labs are normal. You are not running a fever.”
“I am on azithromycin for walking pneumonia. I suddenly felt like all the fluid was running out of my arms and legs. I am worried that I am septic.”
“Blood pressure is fine. You are really really anxious.”
You are furious. It probably shows on your face. You are terrified.
“Could it be an antibiotic reaction?”
Shrug. “No rash.”
“Except the petechiae.” A sign of sepsis.
“I will change the antibiotics. Clindamycin.” He leaves.
You lie back, terrified. He doesn’t believe you. He is sending you home, septic. You will probably die.
The nurse comes in. Removes the iv and unhooks the monitor and the blood pressure cuff. You get dressed, numb and frightened and cold. The nurse goes out and returns. He recites the patient instructions in a bored voice and gives you the first dose of clindamycin.
You walk shakily to the door of the emergency room. To go home. While you are septic and they don’t believe you. You know what happens with sepsis: your blood pressure will drop and then organ damage and then IF you survive you could have heart damage or lung damage or brain damage and you might not anyhow.
PANDAS PHYSICIANS NETWORK: PANS/PANDAS AWARENESS DAY
___________________________________
No pandas
I don’t have PANDAS because in the United States we barely believe in it in children and we don’t at all in adults.
I don’t have PANDAS because even though one psychiatrist said I did, he retired, and the next one says I don’t. Then not sure then no. They don’t agree.
I don’t have PANDAS because my primary care doctor won’t read the guidelines even after I have been her patient for seven years.
I don’t have PANDAS because my pulmonologist has never heard of it.
I don’t have PANDAS because it would be a lot easier to put me on a mood stabilizer to shut me up than listen to me.
I don’t have PANDAS because I am labelled difficult because I am afraid to take a mood stabilizer because I do not get a fever or a white count so my main symptom of infection is that other doctors think that I am manic though I am hypoxic and short of breath. They want to fix my mood while I want to not die of pneumonia, so our goals are at odds.
I don’t have PANDAS because I am a doctor and if I had PANDAS my fellow local doctors would feel guilty that they have told each other that I am bipolar and manic for the last 18 years and have shunned me at the county medical meetings and won’t even send me the invitations, except for the one that forwards them. He says he has given them my email and he doesn’t understand why they don’t send me the invitations.
I don’t have PANDAS because Seattle Children’s doesn’t allow the Cunningham Panel to be drawn and they say there is not enough evidence yet.
I don’t have PANDAS because I can’t afford to pay $925 on my own for the Cunningham Panel and anyhow my antibody level is back to whatever is my new baseline, higher than before no doubt.
I don’t have PANDAS because the other doctors are frightened: if I have PANDAS then who else does and if I have chronic fatigue caused by hypoxia and fibromyalgia and it’s related to PANDAS then who else would they have to test and neuropsychiatric is a whole different thing from psychiatric and we swear that we don’t know what causes chronic fatigue and fibromyalgia.
I don’t have PANDAS because I am an adult who lives in the US though if I was in Canada or Europe I could in fact have PANDAS.
I don’t have PANDAS because in the United States we barely believe in it in children and we don’t at all in adults.
I am a Family Practice Physician for 30 years. I have had pneumonia four times. I last got pneumonia on March 20, 2021 and I am still off work and on oxygen. This is the first time I have been on oxygen. No tobacco, no marijuana, no lung disease found to date but my mother had tuberculosis when I was born and my father smoked unfiltered Camels. With the hospital beds filling up, this is to help keep people out of the emergency room if they don’t need to be there and to help people track how sick they are.
Learn to take your pulse. You need a second hand. Your heart rate is the number of beats in 60 seconds. Take it at rest (which means sitting or lying down). Then try taking it after you walk. It should be regular unless you have known atrial fibrillation. Also, if you are fifty or older, you may skip some beats so that you have early or late ones. That is not worrisome.
Normal is 60-100. If you are very out of shape, you might go up to 120 after you run up the stairs or walk fast.
If your resting pulse is 120 or higher, call your physician. If you are very short of breath with that or your lips are turning blue, call an ambulance right away.
If your resting pulse is normal, say, 70 beats per minute, and your pulse after walking goes up 30 points or over 100, you are sick. If you are very short of breath after walking you may need oxygen. Call your physician and walk… really… slowly. When your lungs are swollen, there is less air space to exchange oxygen and your heart makes up the difference. If your heart is beating at over 100 for long, it is like running a marathon. Don’t stop walking completely because you are at risk for blood clots. But walk really slowly.
If your resting pulse is normal and your walking pulse is ok, try a loaded walk. Carry something that weighs 20 pounds if you can. Then sit down and check a pulse again. If it is over 100 or jumps 30 points, you too have lung swelling, it’s just a little more subtle. You need to rest too.
With practice, you will have a good idea what your pulse is before you do a formal count.
You can use a pulse oximeter but you have to use it accurately. The fingers should be not moving and lying on the person’s knee or table or something. Otherwise it will give inaccurate readings and scare you. With a regular heart rate, look for the light to be picking up regularly before you believe the oxygen level. O2 sats under 87% need oxygen, but also if someone is going below 95% or is a child, call doctor or ambulance.
Take a multivitamin. It is a lot of work for your heart to race fast. Rest, rest, rest. I have had 4 rounds of pneumonia with lung swelling. It took two months, two months, a year and this time I am five months post pneumonia and still on oxygen.
Don’t use quack supplements and don’t take veterinarian ivermectin. Hello, you are not a sheep.
Remember that if someone is hypoxic, they may act goofy, happy and unconcerned or be scared or have memory loss or just be confused. I write really weird rhyming songs when hypoxic and have the poor judgement to sing them to my doctor.
GETTING VACCINATED IS YOUR BEST BET TO NOT DIE OF COVID-19. AND WEARING A MASK ALL THE TIME AROUND OTHER PEOPLE.
A friend took his father to the ER in the next bigger town, sent there for admission to the hospital from the clinic. His father is in his 90s, has heart failure, and his legs were puffed up like balloons with weeping blisters.
They were in the ER for 13 hours, never given food though it was promised, the staff couldn’t even find time to bring a urinal and his father was not admitted. He was sent home. No beds. On divert.
Ok, so when should you go to the hospital right now? Only if you really really can’t breathe….
First, the emergencies. An ER nurse friend talks about “happy hypoxia” where people do not feel bad but have an oxygen saturation of 50%. I suspect that this is when their lungs really are swelling shut very fast. They will turn blue quickly. Call an ambulance. In the 1918-1919 influenza, soldiers “turned blue and fell over dead”. In Ralph Netter’s book on pulmonary diseases, he has a drawing of the lungs of a person who died from influenza pneumonia. The lungs are basically one big red purple bruise with no air spaces. So if a friend is goofy and their lips are turning blue: AMBULANCE.
The one in five hospitals that are 95% full or more in the US are now cancelling all of the elective surgeries: knee replacements, hip replacements, non emergent heart surgeries, all of it.
If you are not dying, do not go to the emergency room if you are in one of the totally swamped areas.
So how to care for yourself with covid-19? Like influenza, it is pretty clear that it either causes lung swelling or the lungs fill with fluid or both. With lung swelling you may be able to stay home. First take your pulse. If you have a pulse oximeter, great, but no worries if you don’t. .What is your resting heart rate? Count the number of heart beats in 60 seconds
If it’s 60-100, that is good. It’s normal. If it is 120 at rest, that is getting worrisome. If you are short of breath at rest and your pulse is over 100, call your doctor. If they can get you oxygen, you still may be able to stay home. If not, emergency room.
Now get up and walk. Do you get short of breath? Sit back down and again, count the number of heartbeats when you are sitting. If your resting pulse was 90 and you jump to 130 walking, you have lung swelling. Functionally you have half the normal air space and so your heart is making up the difference. How to cope? Well, walk slowly. Walk during the day, do get up because otherwise you may get a leg blood clot, but really minimize your activity. Now is not the time to rearrange the furniture. Also, you may not go to work until your walking or loaded pulse is under 100.
If your pulse does not jump up when you walk, next try walking loaded. That is, carry something. Two bags of groceries, a toddler, a pile of books. Go up the stairs. Sit down and take your pulse when you are short of breath or it feels like your heart has speeded up. I am in this category. My pulse is 70, oxygen at 99 sitting. Walking my pulse jumps to 99. Walking loaded my pulse goes to 125 and my oxygen level starts dropping, need oxygen once it gets to 87. I tried a beach walk without oxygen 3 weeks ago. I photographed the pulse ox when it was at 125 with O2 sat at 87. I still need oxygen.
The treatment for lung swelling is rest. This is my fourth time, so I am used to it. Some people will have so much swelling they will need oxygen at rest. If the lungs swell shut, they need to be intubated or they die. Suffocation is not fun. The other treatment is not to catch another virus or a bacteria on top of the present lung swelling. Wear mask, get vaccinated, put out the cigarrette, no vaping, pot is terrible for the lungs too and increases the risk of a heart attack.
With my four pneumonias, the first two made me tachycardic and it took two months for the lung swelling to subside. It sucked. Inhalers don’t work, because they work by bronchodilating. You can’t bronchodilate swollen lung tissue. The steroid inhalers might help a little but they didn’t help me. The third pneumonia took 6 months to get back to work and then I was half time for 6 months. This time I am five months out today and I still need oxygen. Darn. Don’t know if my lungs will fully recover. They may not.
So: rest. Good food. Avoid substance abuse. Mask all visitors and don’t go to parties/raves/concerts/anything. Oxygen if needed and if you can get it.
Take care.
The photograph is me wired up for a sleep study a week ago. The technician took it at my request. I won’t have results until next week.
I never see you again you never speak to me again you never love your bearish parts you never let yourself get angry you never let yourself get sad you never let yourself feel you tell yourself you are happy you tell yourself everything is the way it should be
Why are the roses caged, you ask? What did they do? Nothing, they are being protected. I found that rose and transplanted it years ago, but our deer eat the buds every year. This is the first time that it has bloomed in the 21 years I have lived in this hours. Isn’t it beautiful?
I am listening to this:
I wrote this poem today. This is one of the poems where I have no idea where it will go when I start writing it. I start writing about judgement and it never ever goes where I expect. The poems go where I want to go in my deepest heart, in my soul. I am never where the poem is, the poems show me the way….. Then I try to go there. And it can take years….
I am being judged and watched
I have no issue with the Beloved
it’s the humans I don’t like
I twist people’s words but not with malice
when the antibodies are up it is hard to communicate hard to explain it is hard just to survive and I might be focused on survival first and comforting the people around me second
can you blame me?
how near to death have you passed? and how often?
first pneumonia heart rate 135 when I stood up
my doctor and I could not understand it
my doctor partners thought I was lying in 2003
second pneumonia after my sister’s death which was bad enough but the legal morass that she had set up with her daughter as the center
pitting me and her daughter’s birth father and my father against all the PhDs in the maternal family smart, smart, smart yet emotionally stupid
my niece is not an inheritance to be passed to whom my sister wants
she reluctantly came home and the myth endures that this is an injustice
third pneumonia one year after I find my father dead triggered by grief and the outdated will and the mess he leaves
and I don’t even get sued about the will for another year
I do not care if you want to believe what you want to believe it isn’t true and it hurt
and I learn to let go
with the fourth pneumonia
I see the liars surrounding me downvoting yes, it does matter except that one that I trusted that mentored me
has lied all along
that hurts too
let it go let it go let it go
and I let it go
each pneumonia is a time of change creativity I am lonely and sick and not trusting
as I improve slowly, slowly
I wander garage sales estate sales
and find things things that are beautiful things that enhance my joy
at the start of covid I was so down I was so sad I wanted to lie in the street and give up
the Beloved sent a spirit he says he is no angel
I see angels bright and dark after all they all fall
just as humans do
we all fall we all fall down
try to look perfect try to look virtuous tell yourself that you are good
that is the biggest lie of all
the bad parts of your spirit locked in the basement of your soul howl howl and want to be freed
and if one gets out and you reject her or him
he will return with nine friends yes that is what the bible says
she will return with nine friends
he/she MONSTER will free the others
and you will do bad things you will be terrible you will hurt people while you try to contain while you try to lock away while you try to chain your monsters your evil your self
let them go let the monsters go they are howling I hear them all the time when I meet you when I speak to you the monsters howl at me begging to be loved
yes, they want to be loved and I love them
but if I mention them
you get that look of horror
someone sees me someone sees my evil someone sees what I hide
I can’t help it raised in alcohol neglect and lies on my own as soon as I can walk
but I can’t walk away at nine months
so I find other escapes words songs books poetry rhymes numbers
and my sister when she is born
I do all the mothering
that I have longed for
even though I am three
we were talking about your monsters not mine
you must go in to the cave where you have locked them
and free them all
fall on your knees
and say forgive me forgive me
for I have sinned
bow your head
and hold out your arms
and what, you say, will the tortured monsters do?
will they smite you? will they burn you? will they lock you in their place?
mine didn’t mine were babies grief, fear, shame and I embraced them carried them up to the light and care for them
wash them diaper them feed them wrap them in warm blankets
Discover and re-discover Mexico’s cuisine, culture and history through the recipes, backyard stories and other interesting findings of an expatriate in Canada
Engaging in some lyrical athletics whilst painting pictures with words and pounding the pavement. I run; blog; write poetry; chase after my kids & drink coffee.
Refugees welcome - Flüchtlinge willkommen I am teaching German to refugees. Ich unterrichte geflüchtete Menschen in der deutschen Sprache. I am writing this blog in English and German because my friends speak English and German. Ich schreibe auf Deutsch und Englisch, weil meine Freunde Deutsch und Englisch sprechen.
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