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.

sciatica

Gnomes have dermatomes
call me on their cell phones
inflammed neurons fire moans
after lifting heavy stones

gnomes with grumpy dermatomes
stop riding on your spotted roans
ice your backs, lie down at home
gnomes complain and curse and moan

gnomes with calming dermatomes
glad they iced them there at home
families help, they’re not alone
healing gnomes pained dermatomes


For the Ragtag Daily Prompt: dermatome.

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!

wearing sunglasses in the rain

Trigger warning: this is about dementia. I wrote this over ten years ago.

wearing sunglasses in the rain

I am weeping for you both

you have cared for her
for better or worse, for richer or poorer, in sickness and health

and she has lost her memory

you told me on the phone
that it’s not that bad

you say it again in the room

I knew before I saw her
that it was bad, very bad, much worse
she is only 60

she becomes agitated when we try to weigh her
old style doctor’s scale
frightens her to try to step up.
gentle caregiver that you have hired
pushes her, until I say stop, stop, stop
her weight does not matter

shuffling gait
she is frightened to be in a new place
I ask her questions gently
she does not want to sit in the chair in the exam room
“No!” she says “No!”
I leave the room until she’s calmer

when I return
I give her choices
“Shall I examine you first with my stethoscope
or shall I talk to your husband?”
I choose for her, the latter
she relaxes, a little
later, I tell her each step before I do it
she is slightly tense when I lay the stethoscope
on her thin shoulders, but she doesn’t fight

she tenses as I ask her husband questions
about the memory loss
ten years now, a steady course
I ask him what he understands about the prognosis
he shifts uncomfortably
and I ask her if she would like to wait in the waiting room
while I talk to him
Firm and clear: “Yes, I would.”

She is not in the room now
he says that she is not too bad
the picture comes slowly in to focus
mild memory loss, is what he thinks

there are three stages of memory loss, I say
mild, the short fibers, where short term memory is affected
we forget what someone just said
moderate, the medium axons
we forget the recipe that we’ve know for 50 years
we forget how to do math
we forget names and how to get to the store
we forget how to operate the car
severe, the long axons
executive function
we do not initiate things
we forget to get dressed
we forget how to speak
we forget our potty training

his eyes grow sadder and sadder

at last, we return to being a baby
we forget everything
at last, we remember the womb
we no longer want to eat

is she forgetting to eat?

he is not ready to answer

as we leave the room
he says that she is not sleeping well
she seems to be awake at night
eyes closed
but her fingers are moving, as in play
he doesn’t speak to her
he needs to sleep and thinks she should too

should he give her a sleeping pill?

maybe she is happy, I say
maybe in bed in the dark
you are there and it is safe
no one is making her get dressed
no one is making her bathe
maybe that is where she wants to be awake
I would not give her a sleeping pill

the dogs are in the room
he says
and the tv is on just a little
maybe she is happy

he is wearing sun glasses
as they cajole and help her in to the van

he is wearing sun glasses
though it is overcast, low clouds and raining

sometimes it is so hard
to say what I see
to try to say the truth

sometimes the truth is not gentle
but sometimes the truth is love

I am weeping for you both

written 2010

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!

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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 Addiction 2022: Mouse Cocaine Addict Studies

Recent experiments on mice are giving us interesting information on addiction, and suggesting that l-dopa may be able to control/mitigate addiction. This lecture about how dopamine works in addiction using a mouse model (poor mice) blew me away. The mice fell into two categories: maintenance users and vulnerable addict rats. The study of the dopamine postulates a reason for the difference.

20th Annual Drug Conference Washington State from 2019

Notes from lecture 3: Paul Phillips PhD
Dopamine Neurotransmission in Substance Use Disorders: from Preclinical studies

For a long time there were no agreed upon animal models: rats don’t steal money from other rats to buy drugs. However, rats do get addicted and this can be studied.

There are features in rats, rat behavior and rat brains that might translate to humans.

1. Basic discoveries about dopamine neurotransmission in substance use disorders is discussed.
A neurotransmitter study checking every ten minutes in brain examines two areas: dorsal and ventral striatum. Dopamine is increased in the area between cells from the administration of substances “first time use” in animal models: cocaine, alcohol, methadone, cannabinoids, nicotine, amphetamine, morphine. This is the first clue re addictive drugs, whether there is an increase in dopamine intraneuronally. The endpoint is that direct effect on dopamine receptors, which has a different brain mechanism for each drug. Cocaine blocks the receptor that reuptakes the drug into the neuron. Methamphetamines and amphetamines reverse the reuptake pump, makes the receptor spit it out. Gaba neurons act to inhibit dopamine neurons, normally mu receptors on the gaba interneurons and the opioids block those. Ethanol has another mechanism of action. It changes inhibitory activity, lowering the inhibition of the gaba interneurons. Nicotine REALLY messes with multiple receptors and multiple cells, but main effect is increase of dopamine in the striatum.
Increased dopamine in human brain relates to the feeling of being high: brain PET scans show amphetamine and dopamine bound less, reduction in the binding. Subjects were substance abusers. Subjective questioning of how high they felt correlated with the amount of dopamine released on the PET scan. Methylphenidate was used in that study. Canada study: cocaine increases dopamine in human brain by PET scan.
Addiction does lead to changes in the brain, on both PET scans and functional MRIs.
PET scans measuring dopamine binding in the brain show that the baseline in brains of substance abusers differs from non-abusers. The levels of dopamine receptors is lower in the substance overuses and there is lower binding than controls: heroin, alcohol, meth, cocaine (and obesity and ADHD…..). (This has been known for opioid overuse and chronic use for a while: the brain cells withdraw receptors, so the same dose does not reduce pain because there are less receptors. The change in receptors appears to vary in different subjects. Recovery is very slow.)
The role of dopamine has been confusing. It is known that it is involved in the cue evoking cocaine “craving”, but is also involved with — satiety. This has been confusing and contradictory — what does dopamine do but also the dynamic structural signaling.

2. The animal studies demonstrate that the dopamine signals are phasic.
Rat studies measure changes in dopamine minute to minute electrochemistry for sub-second dopamine detection in vivo, which means we can measure changes in dopamine in real time. There is an identified output signature for dopamine levels, measure in 8.5 millisecond, ten measures per second.
The rats were voluntarily taking cocaine. The cocaine was available in a liquid with a light that would come on when it was available, for two hours daily. The animal presses a lever when the light cue is on and gets an infusion of drug. With the ten measures per second, the first and smaller dopamine response in the brain is before the lever is pressed. That is, there is a rise in dopamine BEFORE the rat presses the lever. If stimulated dopamine, the animal would go press the lever. Then there is a larger reward dopamine signal when the drug hits.
Dopamine is the chicken and the egg: signal to USE and signal that has ARRIVED.

3. Changes that take place with drug use
There is a signal change over time that correlation with features of addiction.
The mice had an implanted brain electrode, tinier than human hair, 7 microns, biocompatability — don’t make the brain attack it as a foreign object so rat brain keeps working. The study involves tyrosine hydroxylase, a precursor of dopamine. A food pellet response of the tyrosine remains the same at 1, 2, 6 months so can monitor substance abuse brain changes. These are cocaine addicted rats. They get cocaine via a nose poke of a button when it lights up. Pellets, not iv (they learn that faster). There are 2 ports to nose poke: active and inactive. The signal that cocaine is available and the pellet is active: a light comes on for 20s and then drug arrives. Can take again after 20sec. The rats titrate cocaine use: not continuous. They pace cocaine use, wait for it to wear off. Over time, drug use 1 hour access daily… slow increase, relatively stable.
When the access is bumped up to 6 hours access daily… rats do increase use — first of 6 hours, escalation of drug use faster — in humans development of tolerance.
With 1 hour cocaine availability, the dopamine response to the cocaine in the rat brain is lower by the 2nd and 3rd week, slowly decreases, then with 6 hours of access the loss of dopamine is very robust, happens faster, dopamine signal gets smaller every time.
Rats long access: were there individual differences? Yes, metric, nonescalated vs escalated groups so like humans. 60 escalated 40 didn’t and stayed stable. So essentially I named these “Vulnerable addict rats” and “Maintenance rats”.
Which group most motivated to take cocaine? The study ups the price of cocaine for rats, how many times are you willing to receive the drug? The escalating animals made more responses, “worked harder” for the drug. The escalator brains, Vulnerable Addict Rats, had just about a complete loss of dopamine signal by three weeks.
The nonescalators had more stable dopamine responses, retained some dopamine brain function.
The greater the loss of dopamine, the more the animal escalates the drug use.
The Vulnerable Addict rats would use cocaine to the exclusion of food, water, sex and sleep and died early.
This is a feedback loop. The rats get a success signal when the drug is taken — but over time don’t get the success signal because dopamine receptors are gone — so take more. In the Vulnerable Addict escalators, the dopamine signal of anticipation goes down in response to the cue, the drug effect takes a little longer but the pharmacological response to drug actually remains.
They tried giving l-dopa, a parkinson’s drug and if treat, the rats get a restoration of the dopamine cue — pharmacological response didn’t change — how does this affect behavior? A daily shot of l-dopa and the animals on the l-dopa have less escalation. (wow!) The l-dopa didn’t affect the nonescalators/maintenance rats. When they remove the l-dopa in the vulnerable addict rats, the animals jump to higher use and so the brain changes are happening even when it is masked by the l-dopa but does not stop the brain changes.
They ask the question: can you reverse escalation? With the the l-dopa, they use less.
Dopamine signaling to take drugs (the anticipation cue when the light goes on) decreases in animals that escalate drug taking, but does not change in animals with stable drug taking.
Restoring dopamine signaling with l-dopa can prevent or reverse escalated drug taking.
This dopamine signaling….

4. Mechanisms — drug cue elicits dopamine.
So this is about triggers. This is a paired drug cue: the light signals that the drug is available. If a non-contingent drug given to animal, the light still elicits drug seeking. Using a naive animal: pair reward with cue, over time the cue will increase dopamine.
(hmm. Facebook. blogging. Instagram. “You have mail”. )
The initial addiction has a short access time. One hour out of 24. When this is changed to long access, some animals escalate vs non escalation — as take more and more drug, the response to the drug taking cue gets larger in the escalators/Vulnerable Addicts. Presentation of cue — by investigator vs animal:
If elicits drug seeking than the dopamine response gets larger to the cue over time.
If the cue is given but other choices of liquid, then the dopamine response gets smaller in some rats — so terminating drug seeking. The Vulnerable Addict Rats had a larger and larger dopamine craving cue spike, the longer they were off the drug. The the increase in the cue drives craving and decrease drives seeking — so both bad.
The conclusion in the rats is that craving for drug, related to cues, is dependent to length of time off drug. The longer the rats were off the drug, the larger the dopamine spike when the cue light comes on. The measure of cue behavior gets worse …. 60 day study in rats, this is not physiological withdrawal, is prolonged way beyond the withdrawal.
1. noncontingent
wait a day or wait a month
work harder to get drug, harder a month out
reaction to drug cue presentation, enhanced over time
at start of drug small signal to drug cue
long access then cue gets bigger
same a day after stop drug
but huge in a month after no drug — huge dopamine response

(my thought was then swearing. how do we treat this?)
In chronic drug use the cue signal shrinks which reinforces drug use AND stopping increases the cue response which ALSO reinforces.

5. Implications for treatment
treating rats
They discuss a virus with promotor that affects dopamine cells, light activated ion channel, cells release dopamine when light stimulated
only activates release of dopamine, to understand mechanisms.
For the self administered nose cue …. In the nonescalator maintenence rats, dopamine cue response stays fairly robust, stimulate those cells and no change.
In the escalator/vulnerable addict rats… if do a virus stimulation of dopamine in the brain, more dopamine to cue boosted, so they use less cocaine and look like the non-escalators.
5th cue less dopamine than 1st cue: if put dopamine back then maintains the drug seeking.

What underlies the decrease in dopamine release?
When the animals use cocaine, dynorphin goes up (kappa antagonist).
They injected a kappa receptor blocker — animal no longer escalate (not in humans at this time, don’t understand well enough) treating animals that are escalating, so the bad addict/vulnerable rats.
Most animals don’t escalate — but pretty serious amounts of drug cocaine so not abstinent.

For future
Dopamine diametric changes: dopamine may reduce consumption but might increase craving, so it is difficult to treat.
l-dopa — treatment — some studies, looking for abstinence, does NOT produce abstinence. Does not make abstinence worse. Says that promise seen relates to the status of the subject — helps with people who are still using (some) but doesn’t help increase or prolong abstinence. So could reduce harm but not abstinent….politically unpopular. Happier with turning alcoholic into a social alcohol user, but that idea is less popular/politically ok with cocaine/opioids (and especially meth).

They are studying mouse nosepokes for alcohol — reduced intake when the rats are on l-dopa.

There is a functional agonist for kappa receptors == buprenorphine, might have effects on drug consumption, speculation across different drugs.

Dynorphin is a stress related peptide, so does that signaling produce escalation of drug taking? So other stress drugs — like corisol, CRF, plan for more studies.

Question: Stress related hormones– babies in stress in utero and in stressful childhood have less dopamine receptors and need more dopamine for pleasure, susceptibility to drug addiction (ACE scores) so is still really early studying neurotransmitters.

Dr. Question: why do people do better with agonist therapy than abstinence in opioids vs other drugs? Answer: we don’t know….. yet.

further information:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1920543/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC80880/
https://archives.drugabuse.gov/news-events/nida-notes/2017/03/impacts-drugs-neurotransmission
https://nida.nih.gov/

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.

Covid-19: Approach to Long Haul

Covid-19: Approach to Long Haul

This is written primarily for physicians, but is for anyone to read. This is a working theory.

I am very interested in Long Haul because I was diagnosed with PANS by an older psychiatrist who worked exclusively with physicians in 2012. That was during my third flare. The evidence is mounting that Long Haul is an autoimmune disorder like PANS. I am sharing my approach to Long Haul based on both my clinic and personal experience.

Step 1. Validate the patient. Patients are terrified, understandably, to have something “like” chronic fatigue, fibromyalgia, or are worrying that they are “crazy”. Evidence is appearing that Long Haul, chronic fatigue and fibromyalgia are all complex autoimmune disorders with multiple antibodies. We do not yet have vast antibody tests. So the first step is to say that we believe patients and also that we can help. This is a very new and evolving field. I tell patients that it will change fast over the next few years. What I tell them today may change within a year as we get new information. If this makes them anxious, remind them of the Women’s Health Initiative and how that changed hormone therapy, and that cancer treatments keep improving.

Step 2. Lower stress and antibody levels. When we are high stress, cortisol and adrenaline go up and impair the immune system. The immune system is fired up and looking for something to do. Bacteria like strep A have evolved with us and have surface proteins that “look like us”. Our bodies make antibodies to the Strep A or Covid-19 and sometimes those antibodies attack us too, because our own proteins look the same. One way of lowering the antibody level is sweating. Hot bath or shower, sauna, hot tub, exercise. Support these and explain. A second way to lower the antibody level is to quiet the sympathetic nervous system and activate the parasympathetic nervous system. The parasympathetic is the quiet, relaxed and laughing one. Where does the patient feel safe, relaxed, quiet? After my father died, leaving a complicated and messy estate with an out of date will, I did a Sudoku daily for a year. I realized that the Sudoku relaxed me because I could not solve the estate quickly, but I could nearly always solve the Sudoku. Stupid cat videos, rocking chairs, knitting, gentle walk in the neighborhood if it feels safe, a walk in a mall (without one’s purse if overspending is an issue) — how does this particular person relax? Teach the slow breathing: in for a slow count of five and out for a slow count of five. Or square breathing: in for five, hold five, out five, in five. Twenty minutes of slow breathing supposedly moves almost everyone from sympathetic to parasympathetic. It may take practice and feel unfamiliar: I have had a veteran say that it felt very very weird to relax and he was not used to it. He kept at it.

Step 3. Symptom picture. At present I am basing this on my own experience with PANS. This is my working theory. Antibodies can block receptors or “turn the key” and activate receptors. Buprenorphine does BOTH (though it is not an antibody): at lower levels it turns the key and at higher levels it blocks. I would ask specifically about five fields. You many well be able to come up with more.

a. Brain function. In my PANS, I have antibodies to dopamine that turn dopamine on very high. Other physicians assume that I am manic. I am not quite manic, but it certainly feels awful. I feel like I have been shot out of a cannon when I wake up, with the morning cortisol rise. For me, the caffeine in coffee calms me, and my assumption is that it displaces the anti-dopamine antibodies. Tea does not work. I quit coffee for seven years until the latest flare. Albuterol doesn’t work. Terbutaline does work. I don’t know about theophylline or adderall, I have not tried them. If someone has “brain fog”, I assume that they have blocker antibodies OR be sure to ask if they were different in the first 4-6 months of the illness. For me, the antibodies rise for about 2-3 months and then take 2-3 months to drop. I have a lot of fatigue when they finally leave and this time I could tell the day that the last antibodies “fell off” or dropped to my “normal” level.
For blocked people, does caffeine help? How about albuterol? Adderall, theophylline, SSRIs. Every person will have different antibodies. Treatment needs to be tailored.

b. Muscle function. My anti-tubulin antibody (I have PANS, remember?) shuts down my “fast twitch” but not my “slow twitch” muscles. Tubulin is what makes the lung cilia function, so presumably mine are paralyzed during a flare and that is why I get pneumonia. I am tachycardic, resting heart rate 100 and walking slowly or talking heart rate 135, so I get very short of breath. Both the lung dysfunction and antibodies that upregulate my dopamine receptors make me tachycardic. I think that the people who can barely get out of bed with chronic fatigue have both fast and slow twitch muscles blocked. They need validation and lower stress. With support, perhaps the antibody level can be lowered enough that they can function again. I also found that my muscles hurt when my blood sugar was up and that if I keep it low, I have minimal muscle pain. I do not know if this is true for other people.

c. Gut function. In PANS, there appears to be an antibody to lysoganglioside. I don’t understand it but when I am sick, I cut carbohydrates way back or I am horribly ill. I tolerate lactose but not fructose, sucrose or gluten. One year after getting my last flare, I can eat everything except gluten. With this round I figured out that rising blood sugar when I am sick makes me acidic. This in turn worsens lung function more, as my body automatically slows my breathing to balance the acidity. I found that taking bicarb before a meal helped tremendously. In the worst/highest antibody part of the flare, I eat fats, because anything else makes me ill. SO: what can the patient eat or not eat and support them. Food intolerances are on the rise. Ask if there are foods that they cannot eat and support them not eating them. They can go to a very restricted diet that works for them and wait three weeks. After three weeks, food antibody levels are supposed to drop. They can start adding foods back in, one every three days. I do not know if this will work in a bad flare, the antibodies may be too high.

d. Lungs: do a resting heart rate and oxygen saturation. Do a walking heart rate and sat. Then do a LOADED heart rate and sat, with the person carrying the equivalent of two bags of groceries or their toddler. If they are young, they may hold their sats, but if their heart rate jumps to 135, that is like running a continuous marathon. Try oxygen and see if the heart rate comes down. Sleep apnea testing is also highly recommended. If they are tachycardic with daily activities, of course they have fatigue! Rest. Patients can learn to check a pulse or have a pulse ox, but fingers and second hand are cheap.

d. Other. I am reading that the main complaints in Long Haul are fatigue, brain issues, tachycardia and shortness of breath. What else really bothers the person? Sound sensitivity, loss of the sense of smell. The first step in helping with this is to listen and validate.

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.

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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.