Vaccine refusal folly

Who should NOT get vaccinated for Covid-19?

This is supposed to be humor. You may not find it funny.

Clearly oppositional defiant people do NOT get vaccinated. Here are a list of the reasons that I have heard, most of them said to my face or on email:

Hyper Conservative:
1. God will take care of me.
2. It’s false news. All made up by the media. The media is liberal. Even Fox News. Even CNN. They don’t know the true meaning of conservatism. I honor the flag.
3. We do our own research. We have better and deeper sources even than QAnon. If you don’t know what I am talking about than you don’t know! Why are you so stupid?
4. Alien lizards made the vaccine and it has tiny nanobots and it is tracking us and will take over our brains. Some people have ALREADY HAD THEIR BRAINS TAKEN OVER BY LIBERAL MEDIA AND NOW QANON! It’s probably best to bunker down.
5. No I don’t vote. Where is my medicaid check? Those evil government people are trying to take away my mother’s social security. If I voted, I would be part of the problem.
6. Masks kill you. Because you breathe your own breath. It’s not the CO2. You didn’t realize that your breath was THAT foul, did you? EEEEEEE-YUK.
7. No one can tell me what to do. If they do, I won’t do it. I won’t die. So there.

Hyper Liberal:
1. Goddess will take care of me.
2. Antibiotics are evil. Vaccines are evil. If you live NATURALLY, you will live forever. But I ordered that book that tells you how to cook your own medicines on your stove!
3. There is this HERB. It fixes everything. What do you MEAN, my kidneys are failing? But I live NATURALLY.
4. Doctors are evil. Well, not naturopaths. The government is evil. Yeah, I’m on medicaid. My mother NEEDS her medicare check. WTF is WRONG with you people? Why would I VOTE on the evil government?
5. Scientists are evil. If they would use NATURAL remedies, we’d all be fine. No, I don’t get labs checked. I don’t need to. Yes, these are shoes. Whaddaya MEAN shoes aren’t natural? These are handmade with hemp processed in a massive factory and NO LEATHER because LEATHER IS EVIL. I have bamboo towels, too, bamboo is natural. What do you MEAN it takes a fungkload of chemicals to process bamboo into fabric? It’s NATURAL.
6. Humans are evil. We should live naturally. Yes, I live in a house. Houses are natural. If you use natural cleansers and only allow natural fabrics and toys and crystals and foods. I don’t approve of logging. Yes, my house is made of wood, what of it?
7. No one can tell me what to do. If they do, I won’t do it. I won’t die. So there.

Martians:
1. It makes their brains explode in their helmets.

Alien Lizards posing as humans:
1. Well, actually we need to get the vaccine. I got it.

Gorillas:
1. They get the vaccine too, even the oppositional defiant ones. Except for the wild ones that are really canny and who we can’t catch and dart gun with the vaccine.

This is supposed to be humor. You may not find it funny. Don’t use it as proof that you shouldn’t get the vaccine, though people with really crazy ideas shouldn’t get it. Did you hear that they are about to send all the remaining vaccine supply to Africa because people here are refusing it? Is that a rumor or is it true?
The CDC has other ideas. But we don’t trust them, right?

For the Ragtag Daily Prompt: folly.

hope for good coming out of isolation

This video is from 2011. I was invited to be a speaker and had ten minutes to present the Mad as Hell Doctor program, talking about single payer healthcare, medicare for all.

If there is a good thing to get from Covid-19, for me it is single payer healthcare. Because doctors and nurses and staff are worn out, sick, quitting, dying. We need people to take out sick appendixes. We need people to work in nursing homes. We need to support our medical people and I am NOT talking about insurance corporations. They are making more profit than ever. Twenty percent of every dollar paid to them or more.

People say, but it’s socialized medicine, to have medicare for all. Well, no. The only socialized medicine in the US currently is the Veterans Administration. No one that I talk to wants to take away Veterans benefits. Or any of the other government programs: medicare, medicaid, active duty military. The oldest, the poorest and disabled and the people defending our country.

But physicians can do a better job if they are not worrying about prior authorization from 500 + companies, each with multiple different insurance contracts, and who can change what they cover at any time. I get emails all the time: we have changed what we cover. Great. Like I have time to read and learn 500+ insurance contracts. I memorize medicare rules and they change too. Medicare for all, one set of rules and then if you ask if something is covered, we will know.

I am not the only physician who wants single payer: Physicians for a National Healthcare Program.

I find this on line: https://www.quora.com/Could-Medicare-or-Medicaid-be-expanded-to-the-general-population-to-create-single-payer-healthcare-Would-it-be-more-efficient-than-an-entirely-new-program?share=1

The answer is yes, yes, yes. And there would be a continuous ongoing battle about what is covered and what isn’t but that already happens. For two reasons: medicine changes continuously as the science changes and there is a vocal strong fringe, which is occasionally correct. I don’t trust the fringe, but then I don’t trust insurance companies, herbal medicine makers or politicians either.

_____________________________

I can’t credit the videographer because I did not know that the video was being taken or that it was posted. I found out when a new patient said she was seeing me because of my video. I had to look it up.

Covid-19: aftermath

I am thinking about the roaring twenties a lot. I think people went a little nuts, not because of the war, but because they had difficulty being emotionally honest about the influenza pandemic. I think we humans will do it again to forget the deaths, to go into denial, to refuse to grieve.

Yes, that is my prediction.

Be very quiet, I am hunting wabbits.

Be careful in our future roaring twenties. Money will flow like honey and people will go nuts. Hold fast, hunker down, don’t go out without your macintosh, wear clean underwear. Remember what your mother told you, remember what your father tells you. Because that was followed by the Depression and that is one risk.

I don’t know if it will start this spring or next spring. Ok, I AM hoping that my son and future daughter-in-law can get married in early May, since they’ve put it off for two years. But. The 1918-19 influenza was really three years, not two. It tailed off. Half the people in the world got it. In Samoa, half the adults died, or was it 70%? They had little exposure to infection but a ship brought it. They KNEW they were high risk, but a sailor didn’t know he was sick yet.

Why a roaring twenties? Because we want to forget this pandemic, as the last one was forgotten. Our history books say that the Roaring Twenties was about the end of World War I. We teach lots about that. We barely mention the influenza world pandemic. I am reading a book about the 1918-19 influenza pandemic published in 2018. The author says that it is only now, 100 years later, that we are starting to really tell the stories of that pandemic. She gathers stories from all over the world, including stores of different infection control strategies in two cities. One guessed right and one guessed wrong, and in the wrong one, way more people died.

I read about that 1918-19 pandemic after influenza nearly killed me in 2003. I was 42, healthy, a physician, a mother, an athlete. I had NO risk factors except stress. Now it looks like it was a PANS reaction, but at the time, neither my doctor nor I could figure out why I was short of breath and tachycardic walking across a room for two months. Fatigue, chest pain, tachycardia, shortness of breath. Hmmm, what does that sound like? My partners thought I was faking and I was so sick that I could barely communicate. The stresses were my mother dying of ovarian cancer in May 2000 and my marriage being pretty on the rocks and me working way too hard. My psychiatrist said I should take time off. I said, I can’t. He said, you’d better. Then I got flu. “See?” he said. The body decides, not the conscious brain. He was correct, damn him.

The book I read in 2004 looked dry and medical from the outside. It had pages and pages of footnotes. It had photographs of Los Angeles. They knew the influenza was coming towards them like a wave and they tried to get ready. Bodies under sheets were stacked five deep in the hallways of the hospitals. It hit that fast. People, usually age 20-50, turned blue and fell over dead. WHY? It was the immune response. The 20-50 year olds had a better immune response than the 50 and older and their lungs would swell until there was no airspace left. Even then, that pandemic death rate was only 1-2 % in the US. But it was so fast and spread so quickly that everything was disrupted because it was the workers that were deathly ill and at home and there was no one to work.

People wore masks in public, except for the mask refusers, but not in their homes. So entire families would get ill. I don’t think they had figured out viral loads yet. If you are the last one standing, and you are trying to take care of a spouse and six children, you were high risk from viral load and exhaustion.

The Roaring Twenties WAS a way to grieve, it’s just a dysfunctional one. The stages of grief: denial, bargaining, anger, grief and acceptance. My sister said that acting out and revenge ought to be added as stages of grief. She died of breast cancer after fighting it for 8 years. Roaring is denial and bargaining and acting out and revenge, all at once. Everyone grieves differently, remember that. There is not an order to the stages of grief and you don’t do them once. You do them over and over and over.

I am a Cheerful Charlie, right?

War is one way to forget/deny/act out. Let’s not do that. Let’s not have a civil war of forgetfulness and denial.

Let us remember clearly and lean on each other.

Playing for change: lean on me

I think this fits the Ragtag Daily Prompt: inflammable.

My sister’s blog: https://e2grundoon.blogspot.com/2009/01/chemo-not-in-vain.html . She died on March 29, 2012. The start of the blog is here: https://e2grundoon.blogspot.com/2002/02/ .

Blessings.

______________

I got Cheerful Charlie from Pogo comics: read the Albert Alligator section. https://comicstrips.fandom.com/wiki/List_of_Pogo_characters
More recently, Downton Abby used Cheerful Charlie. https://downtonabbey.fandom.com/wiki/The_Cheerful_Charlies

Covid-19: Good and Bad News

I am writing this on Christmas morning.

The good news is this: National Guard Empties Bedpans and Clips Toenails at Nursing Homes. “In Minnesota, an ambitious initiative is training hundreds of Guard members to become certified nursing assistants and relieve burned-out nursing home workers.” (1) Well, hooray, the National Guard is called out to help, because the nursing homes are out of staff and we aren’t supposed to abuse our elderly. I think this is AMAZING. And the National Guard may learn some things about work and the elderly too. Hoorah and Hooray!

The bad news is a snippet from New York State: Omicron is milder, BUT the exception may be children. (2) Child cases of Covid-19 are going up really fast and hospital admissions of children. ICU work is hard hard hard, but child and infant ICU is even harder. Blessings on the nurses who do this and the physicians too. When I did my pediatrics rotation way back in Richmond, VA, in a tertiary care hospital, I had children who were dying: one with a brain tumor, one with liver cancer, one with Wilm’s disease. Hard work. I chose Family Practice. I have still had pediatric patients die, including an 18 month old where I had taken care of mother through the pregnancy, but not terribly many. Even less in the last ten years since my average patient was about age 70. All of my kids in the last ten years were complicated: one with Down’s, another a leukemia survivor, others. Children can be very medically complicated. I had two adults who had survived infant heart surgery as well. They were set up with UW’s Adults who had Childhood Heart Surgery Clinic, though that is not the correct name. I am pretty happy to have that sort of back up only two hours away. They both had pretty awesome heart murmurs and that midline chest zipper scar. Ouch.

So, why post this on Christmas? If the cases are rising in children, maybe that will inspire some folks to get vaccinated or at least not yell at family who refuse to bring small children to an unvaccinated Christmas gathering. Judging by the posts on the doctor mom facebook group, there is quite a bit of family yelling going on. Stand down, folks, and respect other peoples’ boundaries.

The problem is, if enough children are sick, we run out of beds. And staff. “As of Thursday, there were 1,987 confirmed or suspected pediatric covid-19 patients hospitalized nationally, a 31 percent jump in 10 days, according to a Washington Post analysis.” (3)

Blessings.

1. https://www.nytimes.com/2021/12/22/health/covid-national-guard-nursing-homes.html?action=click&campaign_id=154&emc=edit_cb_20211223&instance_id=48593&module=RelatedLinks&nl=coronavirus-briefing&pgtype=Article®i_id=165651500&segment_id=77808&te=1&user_id=c97a1a8547f511fe3bd45b0806ed713c

2. https://www.nytimes.com/2021/11/23/us/covid-cases-children.html

3. https://www.washingtonpost.com/health/2021/12/24/omicron-children-hospitalizations-us/

Covid-19: A tiny bit of good news

This: https://www.healio.com/news/primary-care/20211216/teen-drug-use-decreased-during-pandemic-survey-finds.

“Since 1975, the Monitoring the Future survey, funded by the National Institute on Drug Abuse (NIDA) and conducted by researchers at the University of Michigan Institute for Social Research, has been tracking substance use among adolescent students in the U.S.”

The numbers are interesting, aren’t they? “There was a sharp decrease in reported use (of alcohol) among 10th graders, from 40.7% in 2020 to 28.5% in 2021, and a mild decrease among 12th graders, from 55.3% in 2020 to 46.5%.”

What do YOU think the cause is? More parental supervision or less in person time with peers or something else or both? The news yammers about increased behavioral health issues and “crisis, crisis, crisis” but hello, it’s normal to be stressed during this. Learning to handle stress is important and useful. My elderly patients who lived alone came in to clinic after the first couple months of Covid-19, because they needed human contact. Since I had a one doctor clinic with me and a receptionist, my clinic was safer than the grocery store. We screened everyone for Covid-19 symptoms before they came in and diverted them to the testing site if they had symptoms. Only two of my people got Covid-19 by the time I closed, and both had traveled out of state. Neither one came in to clinic. They went and got tested because of symptoms.

Anyhow, I think it’s both parental supervision and less peer time in person. There is still a significant amount of alcohol consumed. A previous study of well off and very well off households showed increased risk of addiction by age 22 and 25 because 1. money 2. opportunity 3. parents more inclined to be in denial. Parents would turn a blind eye if grades were good. The biggest correlations for NOT being addicted were 1. family dinners and 2. parents who yapped about drugs/alcohol/addiction quite a lot. Caring, I think. Not giving up as the child enters their teens, but staying present and opinionated. Not to mention setting an example of moderation. The households where the parents use methamphetamines or heroin locally are higher risk for the teens.

More here: https://www.drugabuse.gov/drug-topics/trends-statistics/monitoring-future

This fits the Ragtag Daily Prompt: enigma.

Covid-19: Long Haul

https://www.bbc.com/news/av/world-us-canada-58918869 Some people with Long Haul Covid-19 are having to relearn how to walk and talk.

https://www.bbc.com/news/uk-england-leicestershire-59674203. Patients who were hospitalized are still affected at 5 months and one year after they are released from the hospital. Being female and obese are big risk factors. The article says “Long Covid has the potential to become highly prevalent as a new long-term condition.”

One more:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8146298/ ” While the precise definition of long COVID may be lacking, the most common symptoms reported in many studies are fatigue and dyspnoea that last for months after acute COVID-19. Other persistent symptoms may include cognitive and mental impairments, chest and joint pains, palpitations, myalgia, smell and taste dysfunctions, cough, headache, and gastrointestinal and cardiac issues.”
“One puzzling feature of long COVID is that it affects survivors of COVID-19 at all disease severity. Studies have discovered that long COVID affects even mild-to-moderate cases and younger adults who did not require respiratory support or hospital or intensive care. Patients who were no longer positive for SARS-CoV-2 and discharged from the hospital, as well as outpatients, can also develop long COVID [24,30,31,41,50]. More concerningly, long COVID also targets children, including those who had asymptomatic COVID-19, resulting in symptoms such as dyspnoea, fatigue, myalgia, cognitive impairments, headache, palpitations, and chest pain that last for at least 6 months [51–53].”

And the symptoms? “The most common ongoing symptoms were fatigue, muscle pain, physically slowing down, poor sleep and breathlessness.”

Yes, the same as mine.

My initial evaluation of Long Haul Covid-19 patients will cover three areas:

1. Behavioral Health. Are they having brain fog, feeling slowed, feeling like they can’t think? Is that what happened during the Covid-19 or did the opposite happen? Were they manic/ADHD/OCD etc? What happened in the weeks leading up to getting sick? Any major worries or life trauma? Lose a job, a relationship, someone in the family die? I am looking for a dopamine antibody pattern.

2. Musculoskeletal Chronic Fatigue. What muscles work and which muscles don’t work? If they need to lie in bed for 20 hours a day, both slow and fast twitch muscles are affected. If they are short of breath, they should have pulmonary function tests, including a loaded and unloaded walk test. Are their oxygen saturations dropping? They also need a sleep study. Check for sleep apnea. Any signs of ongoing infection with anything? Teeth, sinuses, ears, throat, lungs, stomach, lower gut, urinary, skin.

3. Musculoskeletal Fibromyalgia. WHEN do their muscles hurt? Is it after eating? Do they fall asleep after they eat or does their blood pressure drop after eating? What diet changes have they made? Are there things they have identified that they can’t eat? Gluten, lactose, meat, sucrose, fructose, nightshades, whatever. I am looking for antibodies to lysogangliosides.

Treatment:

High antibody levels can be lowered somewhat just with “lifestyle changes” aka no drugs.

A. Treat infection if present. Look for strep A with an ASO, since we have an occult one that is in the lungs, not the throat. For fungal infection, even just on the skin, lower blood sugar as much as tolerated. This may mean a ketotic diet.

B. Treat behavioral health with drugs if emergent. If suicidal or really losing it (meaning job/relationships/whatever), then drugs may be needed. But not forever. Avoid benzodiazepines. Check for addictions.

C. Lower antibody levels:
a. Lower stress. Many people will resist this. Counseling highly recommended, ‘cept they are all swamped. Have the person draw the three circles: a day in the present life, their ideal life and then what their body wants. Listen to the body.

b. You can sweat antibodies out: hot baths, hot shower, steam room, sauna, exercise. Daily in the morning, because cortisol rises when we get up, and so levels should be lowered.

c. Is there a stimulant that works for this person to calm them down? Or an antidepressant if they are slowed instead of sped up. The relatives of dopamine that work for ME are coffee caffeine and terbutaline. Ones that do NOT work for me include albuterol and tea caffeine. Ones that I have not tried include theophylline, that new relative of albuterol and ADHD meds like adderall. This will be individual to the person because we all make different antibodies. We are looking for a drug that displaces the dopamine antibodies. For people who are slowed or have brain fog, the stimulants may not work. I would try the SSRI antidepressants first, like sertraline and citalopram, unless the patient tells me they don’t work or make them anxious. I would screen for PTSD. For high PTSD scores and high ACE scores, I would use the old tricyclics, mirtazapine (which is NOT a benzodiazepine), wellbutrin or trazodone. Again, avoid benzodiazepines. Also check how much alcohol and marijuana are on board, because those are definitely going to make brain fog worse. The functional medicine people are treating mystery patients with hyperbaric oxygen chambers and I suspect that this works for the people with blocker tubulin antibodies.

d. Muscle pain/fibromyalgia symptoms. Avoid opioids, they will only work temporarily and may addict. Avoid muscle relaxants, they will only work temporarily. Again, the tricyclics may help. The newer antiseizure drugs that are indicated for fibromyalgia are possibilities, though as an “old” doctor I am conservative about “new” drugs. Gabapentin, pregabalin, and if the person is sped up, antiseizure medicines that are used for mania. GENTLE exercise. The line between me having a good day today and overdoing is knife thin. On the overdoing days I go to bed at 5 pm. I went to sleep at 5 pm yesterday and 6:30 last night. I sang for church last night and even though I’d driven myself there, one of the quartet offered to drive me home. “Do I look that grey?” I asked. “Yes.” he said. I turn grey from fatigue and it can be sudden. Right now it’s after my second meal. If I am active, I will fall asleep after lunch if I can. If I go really light on lunch, I crash right after dinner. And remember, I am one of the lucky people who only have fast twitch muscles affected, not fast and slow twitch.

I am adding this to yesterday’s Ragtag Daily Prompt: hopeful.

Covid-19: omicron

So far, it looks like the Omicron variant is more infectious and less virulent.

“This is good, right? you say, “We can all just get it, then we are immune, move on with our lives.”

There are three, no, four major problems that I can think of right off the bat.

1. Long Haul Covid. We do not know if Omicron will cause Long Haul Covid. This is a big deal. The numbers right now are suggesting that one third of the people who get Covid-19, even a mild case, still have problems at six months out and twelve months out. Are you willing to take a one in three chance? Not me! We do not know how to fix Long Haul Covid-19, we don’t know what it is (even though I have suspicions) and some people can’t even get out of bed. This is bad.

2. Omicron will be happily playing with Delta and trading genes and making NEW babies. As one math joker says, “hey, don’t screw up Pi for us.” We could get a version with the infectious capacity of Omicron and the virulence of Delta. This is also bad.

3. We don’t know what it will do to small children and babies and the very old and the immunosurpressed and Covid-19 turns out to infect fat cells which is theoretically why overweight and obese people in their thirties are dying with it. The doc group I am in on Facebutt is reporting a 5% survival with long term ECMO (heart lung bypass machine) and that people may need to be on the machine for months. Like, eight months. This requires two nurses at all times, not to mention a specialist. A few places report 30% survival, but they also say that they say NO a lot and refuse people they think will not survive. Might as well pick the ones that might survive, right?

4. We don’t know if the drugs we have right now work against it. Some may, some may not. Starting over.

So, I still say get immunized if you haven’t and get boosted if you have. Get your influenza shot too. The masks are helping with influenza this year too, but if flu really got a hold, flu in post-covid would be a very very effective killer. And if you are 65* you should get your prevnar vaccine, for pneumococcal pneumonia. It used to be called “the old man’s friend” because it’s such an effective killer of people 65 and up. The new shingles vaccine, yeah, get that too. Do you feel like a pincushion yet?

No word yet from my immunologist. If I am not making antibodies to Covid-19, do I cancel my Christmas trip? Dunno. Will wait to hear.

Happy whatever you celebrate.


1. https://www.cnn.com/2021/12/02/world/south-africa-omicron-origins-covid-cmd-intl/index.html?utm_source=fbCNN&utm_medium=social&utm_content=2021-12-02T13%3A31%3A02&utm_term=link&fbclid=IwAR0NySrFr-I_ieYmVMQawstw6-oEGlxf32MgcbKyLz8RvpdHHGfzZ678XTY

2. https://robinschoenthaler.medium.com/everything-you-ever-wanted-to-know-about-omicron-that-we-dont-know-yet-d85bdd64d76e

3. https://longbeach.gov/press-releases/omicron-variant-of-covid-19-virus-found-in-long-beach/. Yep, in my state.

4. https://www.cdc.gov/coronavirus/2019-ncov/variants/omicron-variant.html

* Or are younger and have heart disease, lung disease or anything really complicated, like cancer, lupus, autoimmune stuff, etc, etc.

mask up

Care for your family and friends and community. Mask up and do the best you can not to get nor give Covid-19 this season. The winter is dark but the sun will start returning to us soon. Like the seeds in the ground and the trees with no leaves, we can get through this dark season caring for each other.

Covid-19: masks work, we figured that out YEARS ago

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!”

For the Ragtag Daily Prompt: December. Because everyone should have figured out masks by now.

Antibodies to tubulin

All right.

I am thinking about tubulin blocker antibodies. How would they work?

About 2 weeks ago, I had trouble walking down the stairs because my quadriceps just did not want to bend. In fact, all of my muscles felt awake and grumpy. As if I were Sleeping Beauty, now awake. Of course, if I was Sleeping Beauty and some jerk kissed me awake, I’d punch his lights out. Hands off!

Anyhow, I concluded that my tubulin antibodies had released. Was I better?

Well, no. It’s been weird. In me it’s the voluntary fast twitch muscles that don’t work when I have a PANS/PANDAS reaction, so they are back on line. The grumpy muscles are the slow twitch ones who essentially are screaming “WHERE HAVE YOU BEEN, I’VE BEEN DOING ALL YOUR WORK SINCE MARCH!” Nine months. The fast twitch muscles are weak, the slow twitch muscles don’t trust them and I am having trouble getting it all to work together.

My balance is fine. It just all hurts and is a bit unreliable.

I was in Michigan for Thanksgiving, staying with old friends. My oldest friend there is 80 and does not have wi-fi or any internet. That made doing any blogging quite a challenge and many thanks to everyone who pointed creative spelling. I would go to her son’s house daily and try to put up the work I’d done at her house. Not the way I usually do it and three kids distracting me, which I enjoyed.

It is bowling that makes me realize how weird my muscles are right now. I went bowling with the middle (15) and younger (11) child. Mom watching all of us. My role is Weird Aunt, more or less. I have bowled maybe 12 times in my life. I guttered the first three balls, a 9 pound orange beauty. My muscles all started screaming at me at once in my upper and middle back. Oh, I thought. So I slowed way down and tried to slow bowl. Next was a strike. I ended up bowling 100, which I guess is not so bad for someone who really has no idea what they are doing. My muscles were grumpy but slow was ok and I didn’t pull anything badly. Next morning I am quite stiff.

I am trying to figure out how to rehabilitate the muscles. Do I exercise? Slowly? It’s as if half a team has been missing for 9 months and is now back. The remaining team members are tired, pissed off, and have figured out how to work without them. They aren’t very pleased about relinquishing control and they don’t trust the part of the team that’s been missing. I would go to my doctor and ask to see a neurologist or ask for physical therapy, except that since PANS/PANDAS is barely believed in in children, there are only a few doctors that work with adults and other doctors seem to think they are quacks. One writes articles for Psychology Today. I’ve thought about contacting him, but he’s a psychiatrist. How much do psychiatrists know about muscles?

Let’s extrapolate this too, to the people with really bad chronic fatigue. Presumably they have antibodies to tubulin that affects more muscles, fast and slow twitch. No wonder they lie in bed. I would presume that they are hypoxic too, if they could walk, but they barely can. The Functional Medicine doctors are treating folks with hyperbaric oxygen and I think it might help with these muscles that don’t work and can’t move. It is sneaky. It’s not that the muscle can’t move at all, it isn’t paralyzed, it’s just that the exhaustion and fatigue that comes after moving it is terrible. The body says very very clearly : “DON’T DO THAT.” And we are still in the infancy of looking at antibodies, so we aren’t measuring them. I was going to say we can’t type them, but that’s not true. We are using monoclonal antibodies to treat cancer, so there are ways to isolate and type them. Medical science may explode with this and can’t you see the potential for misuse? Imagine an army affected by a tubulin blocker antibody, against an army with a tubulin augmenting antibody. Holy moly. It has the potential to be really really horrific, which is why I am putting all this up on everything2. Keep it in mind, ok? Nothing like making information public to prevent secrets from screwing us over.

And that’s the news from me. “Har det godt!” which is Danish for “Have it good!” or have a really good day.