On Thursday and Friday I spent six hours daily glued to zoom, for the Inflammatory Brain Disorders Conference. Speakers, both physicians and scientists and physician-scientists, from all over the world, spoke. The research is intensive and ongoing. They spoke about Long Covid, both the immune response and “brain fog”. They spoke about anti-NMDA antibody disorder (the book Brain on Fire) and now there have been over 500 people identified with that disorder and a whole bunch more antibody-to-brain disorders! They talked about PANS and PANDAS and chronic fatigue and Mast Cell Activation Disorder and about the immune system over and over. The new information is amazing and I need to reread all my notes. Psychiatry and Neurology and Immunology are all overlapping in research, along with Rheumatology, since these disorders overlap all four.
It is a medical revolution in the making.
Best news was that 96% of Long Covid patients are better by 2 years from getting sick. That is tremendously reassuring, though the number may change. And the definition of Long Covid is still being sorted out and we do not know if people relapse.
I felt that MY brain was MELTED by the end, but I managed to enjoy the Rhododendron Parade on Saturday and just puttered around the house on Sunday.
If I have had PANS since birth, who would I be if I had not contracted it?
No one knows. We are still arguing about whether PANDAS and PANS exist. But, my daughter says, we make up all the words. The definitions of illnesses CHANGE over time, and what an illness MEANS. Tuberculosis was an illness of poets and people too noble for this world, until microscopes became advanced enough to see the tiny bacterium, and then it became an illness of the crowded unclean poor. Medicine and science continued to study it. Once we recognized that it is an airborne illness, tuberculosis sanatoriums were set up, to quarantine people. My mother was diagnosed with tuberculosis when she coughed blood 8 months pregnant, so I was born in a sanatorium and avoided contracting tuberculosis as a newborn.
Antibodies cross the placenta, even though the tuberculosis bacterium does not. Usually infants contract tuberculosis and die, at least when I was born. The antibodies can trigger PANS or PANDAS.
The antibodies prime the fetus’s immune system. This makes sense, right? The fetus has a sick mother and best if its’ immune system is ready to fight.
Did my younger sister have it? I do not know. Not as badly, would be my guess. My mother said that as kids, we’d both get sick, but I got sicker. We both had strep A many times. My sister got mumps, off from school for three weeks, and I did not get it. But I got everything else.
Now the estimate for children with PANS or PANDAS is 1 in 200. This is enormous. A high prevalence. Antibodies, that I suspect are adaptive and lie in readiness for a pandemic or a crisis. And now we have had another pandemic, with the last really world wide bad respiratory one 100 years ago. Is the prevalence rising because of the pandemic or are we figuring out some of the cause of behavioral health illness or is the definition of illness changing or all three? I think all of them.
My cousin’s mother had polio either during her pregnancy or very soon after. My anthropologist uncle took his family to Bangladesh, where he was doing linguistics. So does my cousin have PANS or PANDAS? I do not know.
And what of my children? My pregnancy with my older child was fourth year medical school and went well. My pregnancy with my second was very complicated. I was in my first year of work as a rural Family Practice doctor and working too hard. I ended up on bed rest for three months and on a medicine. Is labor at 23 weeks an illness? Does it affect the fetus? I was on medicine from 23 weeks to 37 weeks. What effect does it have?
Medicine is still changing and changing quickly. We don’t know. There is so much we do not know.
I wrote this for a group of physicians, so it’s heavy on the science. BUT I think everyone can benefit from understanding the difference between the sympathetic nervous system and the parasympathetic. Also, we can survive without the sympathetic but not without the parasympathetic.
My essay yesterday was about antibodies to tubulin, what tubulin is and how antibodies work. This doesn’t seem very useful if the only thing we can do about the antibodies is remove them by theraputic plasma exchange or give anti-inflammatories. However, there are other approaches. As a rural Family Physician, I have an ever expanding toolbox that I learn from multiple specialties and patients. Mothers of children with PANS/PANDAS may already have figured out many of these techniques.
Our bodies have two basic modes for the nervous system. The well known mode is the sympathetic nervous system. This is the amped up fight or flight system. When we have a very activated sympathetic nervous system, we make less thyroid hormone and less sex hormones and switch production to more cortisol and adrenaline. This helped me to understand adult patients who say they are constantly tired, don’t want sex, they keep getting sick and they also have trouble sleeping. Borderline low thyroid, low sex hormones, elevated cortisol and elevated adrenaline, though it may be at the upper range of normal. The sympathetic nervous system readies muscles for flight or flight, turns digestion to low, reduces secretions everywhere (eyes, salivary glands, stomach, gall bladder, urine, etc) and tightens fascia around the muscles. Blood pressure and heart rate rise. High cortisol over time is not good for the immune system.
The other mode is the parasympathetic nervous system. This is the relaxed system. Digestion and urination works well, muscles relax, cortisol and adrenaline come down, thyroid and sex hormones are manufactured. Blood pressure is lower and heart rate is lower.
The first technique I use to change from sympathetic to parasympathetic is breathing. Swedish hospital is teaching the anxious patients, chronic pain patients and veterans slow breathing. Five seconds in and five seconds out. They recommend building up to 20 minutes over time. If done for 20 minutes, they said that almost everyone calms from sympathetic to parasympathetic. Some people endorse square breathing: in, hold, out, hold, in. I did daily Zen Buddhist meditation facing a wall for 40 minutes during college. This also works and some children might find it an enjoyable challenge. I find Zen meditation easier in a group than alone. I asked a 30 year veteran of the Special Forces to try the 5 in and 5 out breathing because he would find his muscles tight just watching television. He was reluctant, but he returned and said that he is surprised that it works. He also said that he is not used to the relaxed feeling and it feels weird.
Other ways of activating the parasympathetic nervous system for adults include walking, rocking, laughing, magazines seem to love hot baths, anything that relaxes. Playgrounds include places to climb, spin, swing and hang upside down, for children to get a break and play. Again, different people find different things relaxing. During my second strep A pneumonia, an antibody titer came back at 600 with normal being 200 and below. I have read that children can have titers of 2000. I could barely function with a titrer of 600 (off work, obviously) and thought that if my titer was 2000 I would hide under my bed and not come out. I would like input from child psychiatry on downregulating the sympathetic nervous system to parasympathetic in children, but my guess would be that a safe place is very important. Where is that safe place for each child and when they are not having a flare, can they practice going to it in their minds?
Another helpful parasympathetic activity is games or puzzles. My father died leaving an out of date will and a difficult estate. For the year that I worked on it, I did a suduko every day. I could not solve the estate quickly but I could solve the number puzzle every day and that gave me a small window of feeling good and relaxation. Board games or puzzles could work as well. I am less certain about computer games: my understanding is that the visual cortex is activated along with other parts of the brain. This seems more sympathetic than parasympathetic but I could be wrong. The familiarity of a video game may feel very safe and more predictable than the illness. Old movies and reading beloved books is parasympathetic for me. Oddly, sex is parasympathetic in women but both sympathetic and parasympathetic in men. Music can relax many people, and repeating the same music or album over and over. Comics and silly cat videos are parasympathetic.
As a physician, I often acted in a high sympathetic nervous system. A friend of my son’s said, “Your mother is crazy.” My son replied, “No, she’s just intense. About EVERYTHING.” I had to learn not to be intense about everything. We can model relaxation and parasympathetic activity and slowing down for our children, but we may have to set more boundaries at work.
Here is the best write up I have found on the internet about the parasympathetic nervous system: http://www.wisebrain.org/ParasympatheticNS.pdf. They have a great explanation as well as exercises to calm to parasympathetic.
This is very science dense because I wrote it for a group of physicians. I keep thinking that physicians are scientists and full of insatiable curiosity but my own experience with to date 25 specialists since 2012 would say that many are not curious at all.This continues to surprise and sadden me.
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All science starts with theories. Mothers of children with PANS/PANDAS reactions had to fight to get the medical community to believe that their children had changed after an infection and that symptoms of Obsessive Compulsive disorder and all the other symptoms were new and unexpected and severe. This is a discussion of tubulin and how antibodies work, theorizing based on my own adult experience of PANS. I was diagnosed by a psychiatrist in 2012. No specialist since has agreed yet no specialist has come up with an “overaching diagnosis” to explain recurrent pneumonia with multiple other confusing symptoms.
The current guidelines for treating PANS/PANDAS are here: https://www.liebertpub.com/doi/full/10.1089/cap.2016.0148. This section discusses four antibodies that are a common thread in PANS/PANDAS patients. Antibodies to dopamine 1 receptors, dopamine 2 receptors, tubulin and lysoganglioside.
Per wikipedia “Tubulin in molecular biology can refer either to the tubulin protein superfamily of globular proteins, or one of the member proteins of that superfamily.” Tubulin is essential in cell division and also makes up the proteins that allow movement of cilia, flagella and muscles in the human body. There are six members of the tubulin superfamily, so there are multiple kinds.
Antibodies are complicated. Each person makes different antibodies, and the antibodies can attach to a different part of a protein. For example, there is more than one vaccine for the Covid-19 virus, attaching to different parts of the virus and alerting the body to the presence of an infection. Viruses are too small to see yet have multiple surface sites that can be targets for a vaccine. When a cell or a virus is coated with antibodies, other immune cells get the signal to attack and kill cells. At times the body makes antibodies that attach to healthy cells, and this can cause autoimmune disease.
Antibodies also can act like a key. They can block a receptor or “turn it on”. Blockade is called an antagonist when a pharmaceutical blocks a receptor and “turning it on” is called an agonist. As an example of how an agonist and antagonist work, take the pharmaceutical buprenorphine. Buprenorphine is a dual agonist/antagonist drug. In low doses it works as an agonist at opioid receptors. At high doses it is an antagonist and blocks the receptors. It also has strong receptor affinity. This means that it will replace almost all other opioids at the receptor: oxycodone, hydrocodone, morphine, heroin. The blockage and ceiling dose make it an excellent choice for opioid overuse. Higher doses do not give a high nor cause overdose and when a person is on buprenorphine, other opioids do not displace the buprenorphine and give no effect.
Similarly, a tubulin antibody could be an agonist or an antagonist or both. As an agonist, it would block function. My version of PANS comes with a weird version of chronic fatigue. When I am affected, my fast twitch muscles do not work right and I instantly get short of breath and tachycardic. I suspect that my lung cilia are also affected, because that would explain the recurrent pneumonias. My slow twitch muscles are fine. With this fourth round of pneumonia I needed oxygen for over a year, but with oxygen my slow twitch muscles do fine. We have fast twitch fatiguable muscles, fast twitch non-fatiguable, and slow twitch. With six families of tubulin and multiple subfamilies and every person making different antibodies, it is no wonder that each person’s symptoms are highly variable.
Currently the testing for the four antibodies is experimental. It is not used for diagnosis. When I had pneumonia in 2012 and 2014, the antibodies had not yet been described. There is now a laboratory in New York State that will test for them but insurance will not cover the test, it costs $1000 as of last year, and it is not definitive nor useful yet anyhow.
There are studies going on of antibodies in ME-CFS, fibromyalgia, chronic lyme disease, PANS/PANDAS and Long Covid. Recently antibodies from humans with fibromyalgia were injected into mice. The antibodies caused fibromyalgia symptoms in the mice: https://www.sciencedaily.com/releases/2021/07/210701120703.htm. One of the barriers to diagnosis and treatment of fibromyalgia is that science has not found a marker in common that we can test for. Even the two inflammatory markers that we use (C-reactive protein and Erythrocyte Sedimentaion rate) are negative in fibromyalgia. This doesn’t mean that people do not have pain or that it is not real, it just means we have not found the markers. It may be that the markers are diverse antibodies and there is not a single marker.
The research is fascinating and gives me hope. It boggles the mind, doesn’t it?
When I am sick with pneumonia, I have to keep my carbohydrate intake as low as possible, or I get much much worse. I am attributing this to the lysoganglioside antibody. I have been puzzling about the lysogangilosides because a conference last year says that in some children with PANS/PANDAS, the antibodies cross the blood brain barrier and then macrophages appear to be killing ganglion brain cells. They described a truly awful case. I completely understand children refusing to eat or only eating one or two things when they are having a flare. And everyone may have different food issues because we all make different antibodies. This makes it darned tricky to sort out.
But back to ganglion cells. These are the “nerve” cells. They make up the brain but there are also nerve cells all over the body. And more recently we have started calling the gut, the digestive system, as second “brain”. This is because the gut turns out to have tons of ganglion cells.
So, my lysoganglioside antibodies do not appear to attack my brain. But something attacks my gut. It could be any or all of the antibodies, actually. Ganglion cells in the gut would have receptors for dopamine, the gut has smooth muscle that is powered by tubulin and my understanding of lysogangliosides is that they clean up dead or damaged ganglion cells and should not bother healthy ones. Studies of patients with lyme disease are showing the same four antibodies with a rising baseline for people who have more infections, so my guess is that my baseline has risen enough that I do not tolerate gluten. I may try it again, because my good news is that my muscles feel normal again. No more tubulin blocking antibodies, so I have fast twitch muscles again. They are weak but functional. I am starting to exercise them. Hoorah! If I am super lucky, whichever antibody screws up gluten for me has also dropped, but it may not have. The antibodies do not all do the same thing at the same time. This flare started for me when I had my influenza vaccine and then 5 days later, my fourth Covid-19 vaccine. The shots SHOULD get an antibody response but it was annoying to have the muscle dysfunction again. I managed to avoid getting pneumonia, so the response is shortened, about two months. I had very little of the dopamine 1 and 2 effects, so it was a relatively mild effect. The annoying bit was that I was improving in exercise at pulmonary rehab and the vaccines knocked me back down.
When I have pneumonia, eating carbohydrates makes my breathing worse. That’s weird. Well, not really. This fourth go around I realized that I could mitigate the effect of rising blood sugar as I improved by drinking bicarb with each meal. Sodium bicarbonate, baking soda in water. Why did that help?
Bicarbonate is a base. If it helped the symptoms, then it was balancing out an acid. Rising blood sugar was making me acidotic. When we are acidotic, our bodies will try to increase bicarbonate by speeding our breathing. If I have pneumonia and am hypoxic anyhow, then additional pressure on breathing is definitely not a good thing. So adding a glass of water with a teaspoon of baking soda reduced the acidosis. Then food did not affect my breathing.
Would this help all children with a pandas flare? Again, everyone has different antibodies, so the answer is probably NO. I think it is enormously important to listen to children with a PANDAS/PANS flare and give them an assortment of simple foods to choose from. No pressure for a balanced diet at the height of a flare, because some food or food group may make them feel terribly ill and actually may affect their acid/base balance and MAKE them more ill. I would offer something mostly fat: avocado or bacon or a high fat salami or cheese. Some steamed or raw vegetables, ranging from the high carbohydrate to low. Peas are high, kale is low. No sauces or dressing. Some protein sources, chicken breast or meat or beans. A grain or grain source. Offer fruit but do not push. Let the child figure out what they can eat and roll with it. Try to find more things in that food group. Remember that the main food groups are fats, proteins and carbohydrates. There are a bunch of different carbohydrates, which are sugars. Glucose, fructose (in fruit and corn syrup), lactose (in dairy), maltose, dextrose and others. I would avoid junk food and anything prepared. When I am sick I do fine with lactose, but all of the other carbohydrates make me feel very very ill and mess up my breathing. This is individual and will differ from person to person. If eating makes you feel very very ill, it’s easy to understand why some children stop eating. The obsessive compulsive traits are understandable too: if you suddenly don’t tolerate the foods you love and you do not understand what is happening (and your adults don’t either), you might try to behave in ways to bring back the good old days. Do everything the one right way and maybe things will return to normal. It’s a terrifying illness for children and for parents, but I have hope that my experience will help other people.
The article is a proposal for diagnostic criteria for autoimmune obsessive compulsive disorder, a relatively rare version of OCD. Important because the treatment has to include searching for infection that triggers the antibody response, which in turn attacks the brain. Antibiotics to treat a “psychiatric” disorder. Mind and body connection, right?
The ironic thing about this new proposed diagnosis is that I do not have obivious OCD in any way, shape or form. It is masked by packrat. Also, my OCD is focused. When I was working, it was focused on patients. My clinic charts were thorough, 100% of the time. I was brutally thorough and wouldn’t skip anything. The result was that I got a reputation for being an amazing diagnostician. Usually it was because I wanted ALL the puzzle pieces and the ones that don’t fit are the ones that interested me. They have to all fit. Either the patient is lying or the diagnosis is not as simple as it appears. Occam’s Razor be damned, people can have more than one illness.
In fact, an article 20 years ago looked at average patient panels and said that the average primary care patient has 4-5 chronic illnesses. Hypertension, diabetes, emphysema, tobacco overuse disorder, alcohol overuse disorder, well, yeah. And then the complex ones had 9 or more complex illnesses. You can’t see the person for one thing, because if the diabetic has a toe infection, you’d better look at their kidney function because the antibiotic dose can kill their kidneys if you don’t adjust it. So do not tell me to see the patient for one thing. Malpractice on the hoof. Completely crazy and evil that administrators tell doctors to do that.
No one looking at my house would ever think I have any OCD. I am not a hoarder (ok, books) but the packrat force is strong in me. My daughter did not inherit that gene. She is a minimalist. However, she has come to appreciate the packrat a little.
This summer she said that her purse is wearing out. As a minimalist she has one purse. I ask, “Would you like to see if I have one that you like?” It so happens that as I was trying to recover from pneumonia, a local garage sale had 20+ year old designer purses for $3 each, because the house was going on the market. Got to get rid of the stuff.
“Yes, please.” says my daughter.
I start with the weird ones that I know she will not want. I get eye rolls. But I am progressing towards the purses that are close to the one she has. At last I produce a small leather purse, the right size, in good shape, and she sits up. “Let me see that one.” Like Eeyore with his popped balloon, putting it in a jar and taking it out, she tries putting her phone and wallet in the purse and taking it out. “Yes, I like this!” She calls it “Shopping mom’s closet.” I think it is delightfully comic. The benefits of a packrat mother.
Back to the Nature article and OCD. The diagnostic criteria are gaining steam. Having watched a conference this summer about Pandas and Pans, mine is mild. Some young people have a version where killer T cells invade the brain and kill neurons. I had a moment of panic when the conference was discussing a case, but then I thought, if I had the neuron killing kind I would be dead or demented by now.
Instead, I’m just a little neurologically unusual.
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.
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.
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.
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.
I am thinking about tubulin blocker antibodies. How would they work?
About 2 weeks ago, I had trouble walking down the stairs because my quadriceps just did not want to bend. In fact, all of my muscles felt awake and grumpy. As if I were Sleeping Beauty, now awake. Of course, if I was Sleeping Beauty and some jerk kissed me awake, I’d punch his lights out. Hands off!
Anyhow, I concluded that my tubulin antibodies had released. Was I better?
Well, no. It’s been weird. In me it’s the voluntary fast twitch muscles that don’t work when I have a PANS/PANDAS reaction, so they are back on line. The grumpy muscles are the slow twitch ones who essentially are screaming “WHERE HAVE YOU BEEN, I’VE BEEN DOING ALL YOUR WORK SINCE MARCH!” Nine months. The fast twitch muscles are weak, the slow twitch muscles don’t trust them and I am having trouble getting it all to work together.
My balance is fine. It just all hurts and is a bit unreliable.
I was in Michigan for Thanksgiving, staying with old friends. My oldest friend there is 80 and does not have wi-fi or any internet. That made doing any blogging quite a challenge and many thanks to everyone who pointed creative spelling. I would go to her son’s house daily and try to put up the work I’d done at her house. Not the way I usually do it and three kids distracting me, which I enjoyed.
It is bowling that makes me realize how weird my muscles are right now. I went bowling with the middle (15) and younger (11) child. Mom watching all of us. My role is Weird Aunt, more or less. I have bowled maybe 12 times in my life. I guttered the first three balls, a 9 pound orange beauty. My muscles all started screaming at me at once in my upper and middle back. Oh, I thought. So I slowed way down and tried to slow bowl. Next was a strike. I ended up bowling 100, which I guess is not so bad for someone who really has no idea what they are doing. My muscles were grumpy but slow was ok and I didn’t pull anything badly. Next morning I am quite stiff.
I am trying to figure out how to rehabilitate the muscles. Do I exercise? Slowly? It’s as if half a team has been missing for 9 months and is now back. The remaining team members are tired, pissed off, and have figured out how to work without them. They aren’t very pleased about relinquishing control and they don’t trust the part of the team that’s been missing. I would go to my doctor and ask to see a neurologist or ask for physical therapy, except that since PANS/PANDAS is barely believed in in children, there are only a few doctors that work with adults and other doctors seem to think they are quacks. One writes articles for Psychology Today. I’ve thought about contacting him, but he’s a psychiatrist. How much do psychiatrists know about muscles?
Let’s extrapolate this too, to the people with really bad chronic fatigue. Presumably they have antibodies to tubulin that affects more muscles, fast and slow twitch. No wonder they lie in bed. I would presume that they are hypoxic too, if they could walk, but they barely can. The Functional Medicine doctors are treating folks with hyperbaric oxygen and I think it might help with these muscles that don’t work and can’t move. It is sneaky. It’s not that the muscle can’t move at all, it isn’t paralyzed, it’s just that the exhaustion and fatigue that comes after moving it is terrible. The body says very very clearly : “DON’T DO THAT.” And we are still in the infancy of looking at antibodies, so we aren’t measuring them. I was going to say we can’t type them, but that’s not true. We are using monoclonal antibodies to treat cancer, so there are ways to isolate and type them. Medical science may explode with this and can’t you see the potential for misuse? Imagine an army affected by a tubulin blocker antibody, against an army with a tubulin augmenting antibody. Holy moly. It has the potential to be really really horrific, which is why I am putting all this up on everything2. Keep it in mind, ok? Nothing like making information public to prevent secrets from screwing us over.
And that’s the news from me. “Har det godt!” which is Danish for “Have it good!” or have a really good day.
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.
Engaging in some lyrical athletics whilst painting pictures with words and pounding the pavement. I run; blog; write poetry; chase after my kids & drink coffee.
Refugees welcome - Flüchtlinge willkommen I am teaching German to refugees. Ich unterrichte geflüchtete Menschen in der deutschen Sprache. I am writing this blog in English and German because my friends speak English and German. Ich schreibe auf Deutsch und Englisch, weil meine Freunde Deutsch und Englisch sprechen.
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