Category Archives: medical system failure

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failure of the medical non-system

One thing that makes me gloomy, as a Family Practice Physician: the only person who has read my medical notes from the multiple specialists is ME.

Since March 2021, I have seen Family Practice, Cardiology, Pulmonology, Infectious Disease, Immunology and Psychiatry. I am in a rural area, so this involves three different hospital systems. They all use the EPIC electronic medical record, but they won’t release information to each other. I have gotten two of them hooked together under ONE of my names and passwords but guess what: my primary care physicain can’t see the notes from the other sites. Only I can. “Proprietary infromation.” Hey, you stupid medical non-systems, this is MY healthcare, MY notes, and YOU SUCK.

My primary care physician COULD request the notes from my pulmonologist but she hasn’t. I find this incomprehensible. I have been on oxygen for over a year. I guess my doctor frankly doesn’t care. Has she farmed my lungs out to pulmonology and doesn’t have to pay attention any more? My goal in practice was to have all of the specialists’ notes. If that was five different specialists, I requested them. Ok, it is next to impossible to get psychiatry notes. I keep wondering if psychiatrists really write notes. The patients never seem to know what diagnosis the psychiatrist is using. One hundred percent of the people that I have seen put on an (addictive) benzodiazepine say that it is for sleep. Meanwhile, at the conferences, the psychiatrists say that primary care should not give the patients benzodiazepines for sleep. I raise my hand: “Even when you psychiatrists have started them? The patients all say it’s for sleep. We don’t know WHAT you have them on it for.” When I try to stop the benzo, the patient has a fit and says that psychiatry said they have to have it. And the psychiatrist has retired or left or changed the phone number and there are no notes ever.

Anyhow, I am counting up specialists. I had really bad strep A pneumonia in 2012 and 2014. Since 2012 I have seen 20 specialists. That is counting the three Family Practitioners, because Family Practice is a specialty too. I thought it was about taking care of the whole person, which to me means reading all the specialists notes, but not one of the ones I have been to has done that.

So the medical system is an abject failure. I blame the US citizens. We choose the system with our votes. We need medicare for all, single payer healthcare, and one electronic medical record for all of the United States. Right now, there is a push to privatize medicare and turn it over to For Profit. We need to fight this and we need to demand better healthcare. Hospital organizations should not be refusing to send my clinic note to my primary care doctor. It is stupid and bad care.

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


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stranded mermaid, cilia and tubulin

I took this photograph last summer at North Beach. I thought she looks like a stranded mermaid, thrown up on shore. I couldn’t move her, she was twice my length. The rock attachment had come too, up from our sea beds.

Happy solstice. Today marks the one year day from when I realized that I was having my fourth round of pneumonia, with hypoxia, agitation, fast twitch muscle dysfuntion and felt sick as could be. I am way better but not well. That is, I still need oxygen to play flute, to sing, to do heavy exercise and to carry anything heavy. Which is WAY better then having to wear oxygen all the time. Today I find a connection between the lungs and the brain, in quanta magazine. This video talks about a new found connection between cilia and the brain. We were taught that cilia and flagella are for locomotion, powered by tubulin. However, this shows that cilia behave like neurons and there is a connection. Since my peculiar illness seems to involve cilia dysfunction in my muscles and lungs, so that I get pneumonia, and the brain, because I am wired when it hits, this is a fascinating connection. If neurons developed from cilia, the dual illness makes a lot more sense. Hooray for quantum mechanics! We use it in medicine every single day.

https://www.quantamagazine.org/before-brains-mechanics-may-have-ruled-animal-behavior-20220316?mc_cid=80d950ddd6&mc_eid=5faa14000f

Happy solstice! Here comes the sun!

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first impressions

I am taking a writing class and our next book is on cultural appropriation.

This interests me. I tend to be a little gender blind and race blind when I meet people. I am using my super skill instead. My skill is developed from a really scary childhood: I read the stuffed emotions. The stuff people are hiding.

No way, you say. Oh, yes, I say.

My sister described coming home from high school and stopping when she walked into the house. She was trying to sense what was going on. Were our parents fighting? Was our father drunk? Yes, he was drunk, but which stage?

We talked about the stages and which we hated most.

Stage goofy/silly was annoying but not toxic. We said we had homework.

Stage asleep in a fetal ball in the upstairs hallway. My sister said she would step over him to get to her room.

Stage maudlin. We both agreed this was the worst. He would cry and say, “You can tell me anything.” Once he caught me in that stage and I was in tears by the time my mother got home. I left the room. The next morning mother said, “He said you two were discussing the cat’s disappearance.” I didn’t answer. We never said a word about the cat. I didn’t know if he was lying or was too drunk to remember it the next day, so made it up. Don’t care. Avoid.

He was never physically abusive. He and my mother would scream at each other at 1 or 2 am through most of high school. Reading her diaries, she writes that she drinks too much. I think they were both alcoholics, thought the family story is that he was the bad one. But I can’t imagine yelling with a drunk at 1 or 2 am for an hour. What is the point? They are drunk. So either she was drunk too or needed to fight.

Emotionally abusive, yes, both parents. My mother would take any show of fear or grief and tell it as a very very funny story to every person she ran into. Is it any surprise that I had to go into therapy after she died to learn to feel fear or grief? My sister would say, “She’s got her stone face on,” about me. Um, yeah, I am NOT going to let my family see my emotions…

Anyhow, that is what I read in people when I first meet them. It’s not the suit, the clothes, the make up, the race, the gender. I pretty much ignore those. I was fashion blind in junior high, a girl geek, could not read the code and did not care. I had given up on socializing with my fellow students. I was hopelessly bad at it. I did a lot better with the adults around my parents. I could have actual conversations with them.

I had one patient who was transgender where I couldn’t remember which direction. I didn’t care, either. That was a really angry person. Anger is always covering other emotions, so I avoided pronouns and tried to be as gentle as possible.

I complained to a counselor once that I can’t turn this “off”. And that it’s fine in clinic with patients, but it screws with my relationships with my peer doctors. They do not like it if I “read” them.

It took me years, but I finally realized that I have to use my clinic skills with everyone. I can’t turn off “reading” any more than you turn off your eyes when you meet a new person. But I can be as gentle with everyone as I am in clinic. I realized that as I started on a trip and the trip was amazing, everyone was so nice.

This reading is a product of a high ACE Score: Adverse Childhood Experiences. I score about a 5. One of my patients set off my ACE alarms on the first visit. I asked if he had had a rough childhood and gave a very short explanation of ACE scores. “Oh, I am a ten out of ten,” he said. He was, too. Ran away from home at age 6 or 8.

The ACE scores of all the children are rising from the last two years. The war will raise them even more, worse for the children there and the kids trying not to starve in Afganistan and Syria and world wide.

It will be interesting to read about cultural appropriation. But I don’t care much: I don’t “see” those things when I meet someone.

Hugs and blessings.

The photograph is me and my sister Chris in 1987, before my wedding. We were dancing before the wedding. She died in 2012 after 7 years of breast cancer.

Doctors and nurses and hospital staff are the last caregivers for the elderly alcoholics and addicts who are alone, whose families have finally cut them off. I think this song illustrates their pain. We try to take care of them.

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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/

Click to access MECFS_KeyFacts.pdf

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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.

Physicians for a National Health 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.

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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/

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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.

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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.

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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.

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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