behavioral health, cancer, and the immune system

There are more and more articles about immune causes of “behavioral health” diagnoses.

The latest I’ve read is about schizophrenia:

https://www.nature.com/articles/s41598-020-63776-0

Auto-antibodies are antibodies that we make against something else that then attack a part of ourselves. The most well know version of an auto-antibody is Rheumatic Fever, where an antibody to streptococcus A attacks the joints or skin or heart. I had a patient in Colorado who needed a new heart valve at age 10 or 11 because of Rheumatic Fever.

I have written a lot about PANDAS and PANS (respectively Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep A and Pediatric Acute Neuropsychiatric Syndrome) because an older psychiatrist was suspicious that I have PANS. I have had pneumonia four times and it is accompanied by anxiety and fear, part of which turns out to be hypoxia and tachycardia. I think a heart rate of 135 makes just about ANYONE feel anxious. It feels awful.

But what about other Behavioral Health Diagnoses? Remember, we are on the DSM V, the fifth manual of psychiatric diagnoses. We have not had markers or a clear cause. That is, we are aware that serotonin is low in the intracellular spaces in the brain with depression but we don’t know what the mechanism is, what the cause is and what exactly is happening in the neuron or brain cells. A paper on a particular rat neuron said that there were 300 different types of serotonin receptors on that neuron. Blocking one type caused rats to act in an obsessive compulsive manner. But there are 299 others and then combinations. Whew, there is a lot to be learned about the brain.

Fibromyalgia can be caused by autoantibodies, at least some of the cases: https://www.sciencedaily.com/releases/2021/07/210701120703.htm

Chronic fatigue: https://pubmed.ncbi.nlm.nih.gov/34441971/

Lupus and fibromyalgia overlap: https://pubmed.ncbi.nlm.nih.gov/9207710/

Autoimmune disorders are more common in women. We think this is because of pregnancy. The woman’s immune system has to tolerate a pregnancy where half the genetic material is from the father. Yet the immune system also has to recognize “not me, infection” and be able to distinguish that from the pregnancy. This is tricky. The most common autoimmune disorder currently is believed to be Hashimoto’s Thyroiditis, where there are self antibodies to the thyroid. Post covid could potentially beat this out.

Chronic fatigue and fibromyalgia have been orphan diseases in that we do not have an inflammation marker that defines them. The ESR (erythrocyte sedimentation rate) and CRP (um) are usually normal. These are often elevated in rheumatological disorders. Not having a marker doesn’t mean that the muscles are not painful and doesn’t mean that the fatigue is not real.

I am hopeful that we are on the cusp of a true revolution in medicine, with more understanding of the immune system and behavioral health disorders, as well as post covid, fibromyalgia and chronic fatigue. I worked at the National Cancer Institute in the 1980s before medical school, with Steve Rosenberg, MD. He was trying to get the immune system to fight cancer.

Now there has been a cancer treatment with 100% success: an immune treatment for people with rectal cancer with a particular immune profile. This is AMAZING! https://www.zmescience.com/science/experimental-trial-cancer-complete-remission-02725735/

Only 18 patients, but 100% success! No surgery.

The patch for the National Cancer Institute shows a man fighting a crab: Cancer, the crab. Dr. Rosenberg talked about Sysiphus, who was rolling a stone up a mountain eternally while it rolled back on him. From here: Later legend related that when Death came to fetch him, Sisyphus chained Death up so that no one died. Finally, Ares came to aid Death, and Sisyphus had to submit. In the meantime, Sisyphus had told his wife, Merope, not to perform the usual sacrifices and to leave his body unburied. Thus, when he reached the underworld, he was permitted to return to punish her for the omission. Once back at home, Sisyphus continued to live to a ripe old age before dying a second time.

Maybe the stone has reached a resting place. Blessings and peace you. Please peace me.

Covert covid conundrum

I had covid recently AND I have been very lucky with it.

WHAT?

Ok, so when the war started I had been talking to a friend in Europe about visiting. He said nice seasons were May and September, but he and his wife have a kitchen make over planned for September.

“My son is getting married at the end of April, after two year long postponements, and so May doesn’t seem feasible. Maybe next May.”

Then the war starts. And it is affecting gasoline and causing inflation. I call my friend. “Can I come in two weeks?” March to early April.

“Yes. We have other guests a week after that.”

“Ok.” I try to get a British Airways ticket to stop in London to see an old friend from high school. British Airways has a computer attack and three days go by. To heck with it. I buy a ticket to Paris and on to my friend’s country.

I spend an hour on the phone trying to change to a layover in Paris for three days. I manage that. I fly to Paris and then take the train to London. Three wonderful days with my friend in London. I mask on planes, metros and trains. I double mask on the airplane, with my oxygen, and use a ceramic straw to drink liquids.

After three days I take the train back to Paris, the local train to the airport, and fly to my old friend’s. I arrive at midnight and we take the metro.

We do lots of sightseeing and take a memory trip to his parents’ graves and the town we lived in when I was 17 and he was 18.5. I was an exchange student. The language comes back. I can read but listening is more difficult. My brain won’t process it fast enough.

Four days before I am due to fly back, I get an email from AirFrance. I need a negative PCR covid test within 24 hours of flying to return to the US.

Well. I have a mild headache and muscle aches. Probably not covid, BUT. I go online, register in the country for a test and go to the testing site. Positive. I read about covid. The muscle aches of this strain usually happen at day 4-5. I did notice that going from London to Paris to my destination four days earlier, I feel a little off balance. Not bad, not spinning, just slightly weird. So my guess is that I am at day 4 or 5 of covid.

My hosts have both had covid within the last month, so I am not confined to my room. I read the rules for being allowed on the airplane once you HAVE covid. I have to wait 11 days, have a certificate of the test and then the eleven day certificate saying cleared. I isolate for 5 days, spend about 8 hours rescheduling the flight with Air France and Delta, and contact my doctor. My doc wants me to take medicine, but the local medical people where I am say I am not sick enough. I agree with the local people. The headache is gone the next day, I have mild sniffles, and my lungs are fine. Well, at least, they are no worse.

When I am out of isolation, I take a train to another town masked and stay at a hotel for four days. In that country, 80% of the people are vaccinated and 80% have had covid. They are no longer masking, except a few. I am feeling good. I mask when I am around other people and in all public spaces in the hotel.

The trip home is rather more exciting than I would like. At the airport I am informed that I need a doctor clearance ALSO. They say retest. I say “I AM a doctor.” and pull out a copy of my license. I brought it just in case the war spread and I needed to help out. They let me on the plane. In Paris I nearly miss my connection, but am one of the last 8 people on the plane. I am very relieved once we take off.

The silver lining is that at my son’s wedding I am now very unlikely to get covid or give anyone covid and mine was very mild. The Omicron BA2.12.1 that is circulating in Europe is milder than the previous strains AND ten times more contagious or more. So the covid is morphing towards a cold, which is what coronaviruses used to do to us. There are some strains that I read about that are going in a more virulent direction, so I would prefer to have the mild one and be protected from the nasty ones.

Here is the CDC section about strains in the US:

https://covid.cdc.gov/covid-data-tracker/#variant-proportions

I arrive home on April 12 and then am unsurprised to see covid cases starting to rise again in the US. Here is the CDC tracker: https://covid.cdc.gov/covid-data-tracker/#datatracker-home

I am hoping that it’s more and more Omicron BA2.12.1, since it seems to be milder. I am reassured that covid did not make my lungs worse. Within a week I am better from covid and then get what seems like a normal cold. Covid testing negative. I am feeling well for the wedding and reassured that a normal cold does not force me on to continuous oxygen. I am feeling lucky about the version of covid that I have but I am NOT recommending that people get it on purpose, because even with mild covid, some people go on to develop long covid. Here is an article that I got yesterday through the American Academy of Family Practice:

https://www.healio.com/news/infectious-disease/20220425/global-prevalence-of-long-covid-substantial-researchers-say

Long covid is very worrisome and we don’t know what it will look like after a year or more. Many of the present studies are on unimmunized people, from the first year of covid, so the studies of immunized are still evolving. There is hope that there is less risk of long covid with immunization but there is still a risk.

Covid will continue to morph into different strains. We continue to get “colds” or “upper respiratory infections” because the viruses are very very good and fast at changing and avoiding our immune systems. Consider checking the CDC data tracker above regularly to see if your county or your destination has a high covid level and if so, mask back up.

One caveat: my local health department says we have a high level of transmission right now, here:

https://www.jeffersoncountypublichealth.org/1429/COVID-19

while the CDC says low, here:

Remember that all of these sites have to exchange data and update everything. My best guess is that the local has the best numbers, but that is a guess.

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/

adaptive theory of PANS/PANDAS

This is my working theory on PANS/PANDAS. Pediatric autoimmune neuropsychiatric syndrome/Pediatric autoimmune neuropsychiatric disorders associated with Strep A.

Four or more antibodies. The antibodies can take different patterns in different people.

  1. Antibodies to dopamine 1 and dopamine 2 receptors.

The antibodies are like keys fitting in a lock. The key may fit in the lock and BLOCK or fit in the lock and OPEN IT. So, there are a very large number of patterns that could arise from this, especially when we remember the rat neuron with 300 different receptors for serotonin in one neuron. Think of the possibilities here.

If this antibody BLOCKS, an ANTAGONIST, it will cause slowing/brain fog/depression/and I don’t know what all.

If this antibody is an AGONIST and the key turns, it apparently can cause mania, ADHD, OCD, oppositional defiance, clinginess, separation anxiety, anxiety, etc.

We do not know what causes psychiatric disorders. Now we have a category called neuropsychiatric, where it is caused by an antibody. Or antibodies. What percentage of psychiatric disorders are caused by this? I am betting high rather than low.

  1. Antibodies to tubulin.

If the antibody is an ANTAGONIST, blocking, then slow or fast twitch muscles won’t function correctly. It could block both. I think if it blocks both, that is the severe lie in bed chronic fatigue. I have trouble with my fast twitch muscles but my slow twitch ones work just fine.

If the antibody is an AGONIST, you get some super athletes. I know a number of people that I would suspect fall into this category. I can name five off the top of my head, friends.

  1. Antibodies to lysoganglioside.

This one worries me. Lysogangliosides lyse ganglions. These antibodies are used in soap making, among other things. They break down fatty cell walls.

When I have a high antibody level, I have trouble eating any carbohydrates. As I improve, I have trouble mostly with sucrose, fructose and gluten but not lactose. Also, when I eat gluten, I get acidic. When you get acidic, your body tries to compensate by slowing your breathing to hold on to CO2, because you need to balance the acid H+ with a base, OH-. So: triple whammy. Acidic I automatically breathe slower, which is not helpful when I am already hypoxic and tachycardic.

I have not figured out whether my antibody is an agonist or antagonist.

An agonist would lyse more ganglions. This could be bad for the brain and for peripheral nerves. Neuropathy and dementia.

An antagonist would stop ganglion lysing. Um, in theory, cancer. Lysogangliosides are supposed to clear out bad cells.My guess is that I have an antagonist because of the family history. At least, on my mother’s and sister’s side. My father smoked two packs of Camels for 55 years and did not get cancer: tough bugger, right? Or did he have an Agonist? This line of thinking makes me very highly motivated to eat in whatever way the antibodies want me to. I do not understand why gluten would trigger this and why the gluten effect in me lasts longer than the fructose and sucrose effect. Gluten intolerance and other gut problems are on the rise and this would certainly explain that. This is the cause of at least some fibromyalgia patterns. Not only does eating gluten screw up my breathing, but it makes any muscle that I have used recently hurt like hell. I ate some meatballs without reading the stupid package back in April. Two hours of chest wall muscle pain and honestly, heart pain. I dug the package out and duh: bread crumbs. Gol dang it, I hate it when I am stupid. However, it hurts like hell but at it’s worst I had normal cardiac enzymes and no heart attack. Weird.

Ok, but WAIT, you said ADAPTIVE. How can this nightmare be adaptive?

Sure, adaptive. Remember the back up system for when we are starving? We switch from metabolizing glucose to metabolizing protein and fats, our own if necessary. We go from glycogen metabolism to protein/fat metabolism which produces ketones.

This is the crisis shit hits the fan emotionally and in plagues system.

So, can be caused by stress or infection or a combination.

Why why why?

Because if the stress gets too high or the infection gets too bad, our body switches gears and runs a back up system. I’ve thought of chronic fatigue as some sort of switch the body throws for years, because it’s the hypercrazy work too hard workaholic Type A people who get it. Type B people do not get it or don’t notice or don’t care. Type B people just say, wow, I’m tired, I think I will rest. The Type A people flip out and say “Put me back like I was!!!!” and then they go to 47 doctors and refuse to do anything the doctors say and do internet research and see any kind of quack you can imagine and they are the most exhausting patients.

Why the psychiatric stuff? Ok, take mania. If there is plague or you are in a really dangerous abusive situation, mania suddenly makes sense. Overnight you are different and what’s more, it scares the hell out of everyone. You are shunned. You are alone. You may get thrown out of a job, family, friend group or all of the above. This would tend to protect you against both plague and the really dangerous abusive situation. Whether you like it or not.

And how clever of the brain/body. Here is a back up system. It changes at least four systems, so you are now a different person. You freak your employer, friends and family out. AND you are sick as shit and they won’t listen. You have to get out and go elsewhere for help or hide in your castle or house or whatever. You can’t move or you have super muscles. And every single person has a different pattern.

I look at the long haul covid. The most common symptoms are psychiatric, shortness of breath and fatigue. Sound familiar?

Now, will someone PLEASE fund my NIH west?

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Guidelines for treating PANS/PANDAS: https://www.pandasppn.org/jcap2017/