how doctors think, a dual pathway

A friend calls today and says that another person is bleeding and yet they have been set up to be seen Monday. Why isn’t this an emergency?

Based on the limited information the friend tells me, I agree with the doctors. It is NOT an emergency and I explain why. It is uncomfortable for the person because it may be cancer. Why is that not an emergency?

Let’s use chest pain in the emergency room as an example. Doctors have two brain tracks that are triggered simultaneously by every patient. The first one is “What could kill this person in the next five minutes?” The second is “What is common?” Common things are common and more likely. In medical school the really rare things are nicknamed zebras. You know there are a lot of horses but you can’t miss the zebra. I suppose that in Africa the common things are zebras and the rare ones are orcas or something like that.

Anyhow, the killers for chest pain are heart attacks, sudden death. But there could also be a dissecting aortic aneurysm, where the largest artery in the body is tearing. That person can bleed to death really really fast and that is a surgical emergency. No doctor wants to miss it. There could be a pulmonary embolism, a clot blocking the lung. Chest pain could be from a cancer. A very rare chest pain is from the valve leaflets in the heart tearing so that the person goes in to flash pulmonary edema. And there is Takayasu’s Arteritis, “broken heart syndrome”, where the heart suddenly balloons in size and again, heart failure ensues. Heart failure is actually pump failure, so fluid backs up in the lungs or the legs or both. It is usually slow but rarely very fast and dramatic. A collapsed lung can also cause a lot of pain. And my list is still not complete, I haven’t mentioned pericarditis or myocarditis or a compression fracture.

The common things do include heart attacks, but also anxiety, musculoskeletal problems, inflamed cartilage of the chest wall, fibromyalgia flares, broken ribs, trauma and other things. I was very puzzled in clinic by a woman with pain on both sides of her lower chest wall. In front but cutting through her chest. I ruled out many things. I thought that it was her diaphragm. I sent her to a rehab doctor for help. The rehab doctor sent her to radiology. She had a compression fracture of her spine and the nerves were sending pain messages on both sides. That was not even on my “differential diagnosis” list, because she had no back pain at all. My list changed that day.

Physicians and nurse practitioners and physicians assistants and registered nurses and licensed practical nurses and medical assistants are all trained to think of this differential diagnosis. We are alerted by the history and have to think down both pathways. Last year working as a temporary doctor, the medical assistant came to me saying, “This patient’s blood pressure is 80/60.” “Is he conscious?” I asked, as I went straight for the room. “Yes, he’s talking.” He WAS talking, which means that he’s gotten to 80/60 slowly or is used to it. His heart rate was fast, up near 120. I immediately had him drink water and keep drinking, as soon as he denied chest pain. The problem was dehydration: he was developmentally delayed and had only had one cup of fluid that day and it was now midafternoon. I spent time explaining that he needed 8 cups each day. Not more than that, because if he had too much fluid, it would lower his sodium and make his muscles weak. Most days he drank 3-4 cups. His chart graphed the problem: some days he had normal blood pressure and a normal heart rate. Other days his blood pressure was below normal and his heart rate was fast, his heart trying to make up for the low level of fluid. Cars don’t do so well when there is almost no oil, do they? His kidneys were affected as well. I asked him to drink the 8 cups a day, discussed the size of the cup (not 8 gallons, please) and then recheck labs in 2 weeks. If his kidneys did not improve, he would need a kidney specialist. It turned out that he had nearly fainted that morning in the waiting room. His group home person admitted that no one had noticed that he really was not drinking fluid. I thought that the patient understood and would try to drink a better amount of fluid.

So back to the person I was called about. Infection has been ruled out. This is blood in the urine. A kidney stone has been ruled out, but there is something in the kidney. This is urgent, but if the person is not bleeding hard, it is not emergent. When there is blood in the urine it does not take very much to turn it red. If there is a lot of blood, that can be an emergency, but from the story I got third person, it’s not very much. The emergency things are ruled out but there is still not a clear diagnosis. Yes, cancer is one of the possibilities but it could also be benign. Now a specialist is needed to figure out the next step and the differential diagnosis, the list of things it could be. They will order tests in the same dual order: what could kill this person quickly and what do we need to rule out as common? People often can be very anxious during this period, which is normal. The person says, “I don’t care what it ISN’T, I want to know what it IS.” But sometimes it is a zebra and it takes a while to get to that specific test.

Another example is a woman that I sent to the eye doctor. The optometrist thought it was something rare and bad. He sent her to the opthamologist, who ruled out the first thing, but thought it was something else rare and bad. He sent her to a retinal specialist. The retinal specialist ruled out the second rare and bad thing and said, “No, you have something very rare that is benign.” My patient said, “I have three diagnoses. Who do I believe?” I replied, “No, you have one. The optometrist knew it was unusual and sent you to an eye doctor. The eye doctor know it was unusual and sent you to an even more specialized eye doctor (a “sub specialist”. We keep them in basements.) Now you have a diagnosis. It was a scary process, but I think you should focus on the third opinion because hey, she said it’s benign and it won’t hurt you! That is the best outcome!” She thought about it and agreed. The process was frightening but the conclusion could not have been better.

For the Ragtag Daily Prompt: disquieting.

Patient Satisfaction Score

The latest issue of Family Practice Medicine has an article on patient satisfaction scores.

I remember my first patient satisfaction score VIVIDLY.

I am in my first family medicine job in Alamosa, Colorado. I receive a 21 page handout with multiple graphs about my patient satisfaction scores. I am horrified because I score 30% overall. I am more horrified by the score than the information that I will not receive the bonus.

I go to my PA (physician’s assistant). He too has scored 30%. We are clearly complete failures as medical providers.

Then I go to my partner who has been there for over 20 years.

She snorts. “Look at the number of patients.”

“What?” I say. I look.

My score is based on interviews with three patients. Yes, you read that correctly. THREE PEOPLE.

And I have 21 pages of graphs in color based on three people.

I am annoyed and creative. I talk to the Physicians Assistant and we plan. I call the CFO.

“My PA and I think we should resign.”

“What? Why?”

“We scored 30% on the patient satisfaction. We have never scored that low on anything in our lives before. We are failures as medical people. We are going to go work for the post office.”

“NO! It’s not that important! It is only three patients! You are not failures!”

“Three patients?” I ask.

“Yes, just three.”

“And you based a bonus on three patients? And sent me 21 pages of colored graphs based on three patients?”

“Um…”

“I think we should discuss the bonus further….”

I did not get the bonus. It was a total set up and I am not sure that ANYONE got that bonus. Much of the maximum “earning potential” advertised was impossible for any one person to get. You would have to work around the clock. They got out of paying us by having multiple bonuses that each required a lot of extra work…. They were experts in cheating the employed physicians. That became pretty clear and I was 5th senior physician out of 15 in two years, because ten physicians got right out of there. I lasted three years, barely. I knew I would not last when an excellent partner refused her second year of $50,000 in federal rural underserved loan repayment to quit AND stayed in the Valley working in the emergency room. I called the CEO: “Doesn’t this get your attention?”

“She just didn’t fit in.”

“Yes, well, I don’t think anyone will.” I asked my senior partner how she stayed. “You pick your turf and you guard it!” said my partner. I thought, you know, I hope that medicine is not that grim everywhere.

Unfortunately I think that it IS that grim and getting grimmer. Remember that in the end, it is we the people who vote who control the US medical system. If we vote to privatize Medicare, we will destroy it. Right now 1 in 5 doctors and 1 in 4 nurses want to leave medicine. Covid-19 has accelerated the destruction of the US medical non-system, as my fellow Mad as Hell Doctor calls it. We need Medicare for all, a shut down of US health insurance companies, and to have money going to healthcare rather than to paying employees $100,000 or more per year to try to get prior authorizations from over 500 different insurance companies all with different rules, multiple insurance plans and different computer websites. Right now I have specialists in four different local systems. The only person who has read everyone’s clinic notes is ME because it is nearly impossible to get them to communicate with each other. Two of them use the EPIC electronic medical record but consider the patient information “proprietary” and I have to call to get them to release the notes to each other. Is this something that we think helps people’s health? I don’t think so. I have trouble with the system in spite of being a physician and I HATE going to my local healthcare organization. Vote the system down and tell your congresspeople that you too want Medicare For All and single payer.

Physicians for a National Healthcare Program: https://pnhp.org/

Healthcare Now: https://www.healthcare-now.org/

I have had people say, but think of all the people out of work when we shut down insurance companies. Yes AND think of the freedom to start small businesses if we no longer have to fear the huge cost of insurance: Medicare for all!

Microbiome Dating Service

You have been perfecting your health for years.

You know the antiaging regime and you follow it religiously.

You have read Jeffrey Bland. You have been tested for the mthfr mutation. You understand pandas. You have taken a functional medicine class and you’ve studied biochemistry in your local functional medicine group. You have reversed your autoimmune symptoms by a combination of the best from Dr. Ballantyne and Dr. Perlmutter. Your adrenal fatigue is gone. You have the pajamas that Dr. Oz says help most with sleep. You know your supplements backwards and forwards and have visited the clean green factories that make them.

You are healthy.

You are ready for the perfect relationship. But…. would you want to date someone who doesn’t take care of themselves? What if they don’t care? What if their bacteria invade YOU?

WELCOME TO THE MICROBIOME DATING SERVICE!

We will remove your fears and cares. All clients agree to a monthly detailed microbiome stool screen. You will date healthy people. If a screen fails, a client is notified and all dating partners are notified as well. Clients agree to EXCLUSIVE DATING with other healthy people, tested and monitored.

You are healthy. You want to stay that way. WELCOME TO THE MICROBIOME DATING SERVICE!

WE KEEP YOU SAFE.


http://www.nytimes.com/2013/05/19/magazine/say-hello-to-the-100-trillion-bacteria-that-make-up-your-microbiome.html?_r=1

Update on whatever it is I have

I had the heart echocardiogram bubble study. Normal. I really really did not like having the mix of blood, saline and AIR injected and I COULD FEEL IT. My logical brain knew it was going into a vein, but my emotional brain kept yelling “Air embolisms kill people!” Yes, but that is arterial. My emotional brain did not care. Anyhow, it was fine.

Saw the cardiologist who said he can understand why I feel PTSD going into my local hospital. He says I should not need oxygen at age 60 with no smoking. He says “Not your heart.” Yeah, duuuude, I know. He suggests I go to the Mayo Clinic. I agree.

Meanwhile, my primary sent a referral to rheumatology to have me seen at Swedish to confirm chronic fatigue. This is to keep the stupid disability off my back. Swedish rheum doesn’t call me. I ask my primary’s office. Swedish STILL doesn’t call me. I call them, as follows.

“Hi, I was referred to Swedish rheum and I have not been called.”

“Name, serial number, date of birth, length of little toe. Ah, we just received the referral yesterday.”

“Um, I don’t think so. I was referred over a month ago.”

“Uh, oh,” scrabble noises, “Oh, uh, we got a referral in December. We were not taking new patients in December.”

“When did you start taking new patients?”

“Oh, um.”

“When did you start taking new patients?”

“Oh, uh, January. But we only took the ones that called us, because after they call, we then review the notes.”

“So you ignored the referral until I call? How am I supposed to know that?”

“Oh, uh, we will expedite your referral. Maybe even today.”

So THEN I get a message from my primary that they have REFUSED the referral. Great.

Meanwhile I read the cardiologist’s note, which pisses me off. “We will refer you to Mayo Clinic since you have unexplained hypoxia and you think you have PANS.”

I send my primary a very pissed off note saying, could we please phrase this as “a psychiatrist suggested PANS in 2012 and while no one likes this diagnosis, no one else has suggested an overarching diagnosis since that time in spite of her seeing four pulmonologists, neurology, cardiology, infectious disease, four psychiatrists, allergy/asthma, and immunology”. Saying “the patient thinks she has PANS” automatically labels me as crazy and obsessed.

So, it seems I should write a book, about how the medical communities treat patients, including a fellow physician, horribly. Of those doctors, three have treated me with respect and were grown up enough to say, “We don’t know.” The neurologist, the infectious disease doc and the present pulmonologist. All the rest are dismissive and disrespectful. Oh, and the one psychiatrist, but the next one says, “I don’t believe in PANDAS.” I stare at him in disbelief, thinking “they are animals related to raccoons that live in China, you moron”. I did not even know it was controversial until that moment. Holy PANDAS, Batman.

My primary has suggested I write to the Mayo Clinic myself, and I am going to. Because the present people aren’t listening, except my pulmonologist and she is short staffed and looks like death warmed over post call every time I see her.

So it’s all annoying as hell. The cardiologist seemed pretty nice, but damn, he put the same damn rumor down about me self diagnosing. Most of the doctors apparently think I might be a tolerable person if they could just drug me with psych drugs. And from what I have seen, there are many patients who are in this situation.

For the Ragtag Daily Prompt: WAR.

https://pubmed.ncbi.nlm.nih.gov/30724577/

mad skills

What are your mad skills?

My maddest baddest skill, shared with my younger sister, is reading hidden emotions. Children of alcoholics and addicts learn that one young. Or die. Or start drinking/drugging to numb young.

Our culture is bloody weird. Emotions are stuffed like turkeys until people are near bursting. I swear that half my clinic time was letting people talk about emotions and then saying, well, those seem like pretty reasonable feelings in view of the insanity going on in your family. There would be a silence while the person thought about the horrible terrible feelings being reasonable and then I would say, “You said you want an antidepressant. Do you want to discuss that?”

Often people put it off. Once the feelings are OUT and present and looked at instead of stuffed/contained/terrifying, the person would say, “I don’t know. I don’t know if I need it.”

“Do you want to schedule to come back in two weeks?”

Sometimes yes, sometimes no. If they wanted to start an antidepressant, I would caution that the recommendation was to stay on it for six months minimum if tolerated. Also, if they were starting it in June, I would say, “Don’t stop it in January. Wait until the sun is back. Here that can be July 4th. At least wait until spring.”

The plants are all thinking about spring now. My magnolia would like three more days of sun and then it will burst into bloom. The plums are budding and close to exploding. My camellia is usually first, but I trimmed it at the wrong time of year and so it is not blooming. It looks healthy, though. It is sort of sulking for a season. I would like to sulk for a season too.

Why is our culture, the US, so terrified of emotion? We think everything should be about logic. Emotions are both hormonally and electrically mediated through nerves and blood and they are INFORMATION about our environment and each other. We should let emotions roll through us like waves, and not worry about them so much. I think of myself as an ocean. The emotions are the weather. They roll through. Ok, big storm. Then rain, and lightening. Then low clouds and some fog. Then sun and a beautiful day to sail with a light breeze. But the deeper currents change slowly and the weather is not really that important. I reside in the depths.

The furor over rising prices seems ridiculous to me. The roaring twenties has begun already in housing and buying stuff on Amazon. I have bought two things from Amazon in the last two years. I like to buy local. One order was for my future daughter in law’s wish list. I think people are buying so that they do not have to feel. It is cultural mania. Everyone is rushing around trying to make money instead of grieving. Yesterday I thought, if this keeps up, we WILL have a depression like 1929.

Don’t do it. Don’t buy stuff to avoid the stuff inside. Sit still twice a day, for at least five minutes, and just listen. Try to listen to the depths.

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: 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.

My end of life plan

My End of Life Plan and Wishes are as follows:

1. My plan is that my life should end after a half day of skiing for free at age 125 or older.
2. My wish is to ski quite brilliantly, smoothly and gracefully, though not as aggressively as at age 110 and below.
3. My plan is that other skiers will ask who that brilliant skier is and that all the lift operators will know.
4. My plan is that I will have a delicious lunch, with a glass of champagne, in a condo overlooking the slopes.
5. I plan to have a hot tub and then a massage from one of the many handsome men who flirt with me.
6. My plan is that I will sit in a comfortable leather armchair with my feet on a foot stool, while three of my male friends vie to be the one to bring me the second glass of champagne.
7. My wish is that I will not need any cosmetic surgery or false eyes or ears or teeth or joints or heart valves and will retain my spleen, teeth, gall bladder, appendix and brain in full operating order.
8. My plan is that I will not be on prescriptions, medicines, vitamins, supplements, medical foods, or nutraceuticals nor under the care of any quacks of any sort.
9. My wish is that my male flirts will all think that I am not a day over 75.
10. My wish is that I will be listening to live music, a woodwind quartet or string quartet, just dropped in to say hello, along with three of my great grandchildren, showing off their olympic ski medals, summa cum laude graduation documents, or Nobel prizes.
11. My plan is that after the quartet leaves, I will fall asleep….
12. ….and not wake up, and that though my attendants are sad, none of them throws themselves off the balcony over the cliff and are all surprised at my true age and at the bountiful gifts I have left to each of them with proof that a long life and compounded interest have excellent results. My children, grandchildren and great grandchildren will live long and prosper as well.

http://www.nutraceutical.com/
http://www.fda.gov/Food/GuidanceRegulation/GuidanceDocumentsRegulatoryInformation/MedicalFoods/ucm054048.htm

The photograph is from 2014.

Ode to defiance

Is oppositional defiance running YOUR life?

I am oppositional defiant. I have been for as long as I can remember. I ALWAYS want to argue when someone tells me to do something or gives me advice. BUT, I have learned to work with it.

I work with it by arguing with myself.

Give me a topic. Or advice. I will promptly argue the opposite, internally or externally. Then I will argue the original side. Then my demon fights my angel until they are both tired and decide to go have a beer. Somewhere along the way I will make a decision and also I will laugh, because it’s funny.

B has figured this out. “You argue with EVERYTHING.” he says.

“Yes, and if there is no one around, I argue with myself. All the time.”

However, he is also oppositional defiant. He is smart too, and doing some self examination.

“I am thinking about my life. I think ALL of my important decisions were oppositional defiant ones.”

“Someone told you you couldn’t do that?

“Yes.”

He’s chewing on that. Heh. He accuses ME of overthinking. I replied that I am making up for his underthinking, heh. He suggests that I STOP overthinking and I say, “You want to DESTROY the SOURCE of my poetry?” Double heh.

The point is, some of us are oppositional defiant, but really, we don’t want that to run our lives EITHER. We don’t want ANYTHING or ANYONE to tell us what to do.

B says, “I think that everyone refusing the vaccine is oppositional defiant.” He has a lot of friends, both liberal and conservative.

“That is interesting.” I say. And I wonder if it is worth dying for, to be oppositional defiant. Not if it’s running your life, right? I don’t want ANYTHING to run my life except ME.

So then I spend a bunch of time arguing with myself about the causes of refusing the vaccine. And I have not reached a conclusion. Yet.

I took the photograph at the Bellevue Mall on Monday. A three story waterfall. Really? Isn’t there enough rain in Seattle? We should have a three story sun instead.

Pediatric autoimmune neuropsychiatric syndrome

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.

We will see if I make any headway at all.

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For more about PANS/PANDAS: https://home.liebertpub.com/news/revised-treatment-guidelines-released-for-pediatric-acute-onset-neuropsychiatric-syndrome-pans-pandas/2223