Category Archives: chronic fatigue

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Antibodies to tubulin

All right.

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.

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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/

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werewolf

Time out word warning, in this poem. This poem is about discrimination. Substitute practically anything for werewolf…. disabled, bipolar, depressed, autistic, substance abuser. I am sick of discrimination. For human, substitute “normal”.

You know I’ve been a werewolf my whole life

Started in the womb
triggered by antibodies
to tuberculosis

And I am tired

of people telling me

I’m a werewolf.

Ok? I fucking know that.
I have known it since Kindergarten
where I arrived full of joy
ready to sing

and was shunned

we didn’t have a television

but I knew that wasn’t really it
I was different
I am different

and fuck you humans
different is ok.

I am a werewolf
and I am fucking proud
of all I have accomplished
in the teeth of humans hating me
and trying to shut me down
and shunning me
and reporting me
and doing everything short of shooting me
with real guns

I’ve been told to sit down
shut up
stop arguing
be nice
be good
go away
die
don’t read my writeups
don’t C! my work
don’t talk to me
stop making waves
been fired
been reported
been shunned
been alone

and fuck you humans

get ready
because I am middle aged now
for a werewolf
and I am ready

to be one all the timee

damn the torpedoes
full speed ahead
fuck you humans
for how you’ve treated me

I’ve turned the other cheek
for sixty years

and now
I
will
fight

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writhe

You are sick as shit.

You go to the ER.

You finally feel safe, on a bed, they will save me, you think.

The nurse is on autopilot. He does not seem concerned. You are shaking a little as he arranges you on the bed. He puts the heart monitor stickers on and hooks you up. Blood pressure cuff, pulse ox. Blood pressure is fine, pulse is a bit fast, at 110.

You notice he is not making eye contact.

“I’m cold.” you whisper.

He doesn’t reply. He keeps messing with the wires. He puts the call button next to your hand. He leaves and returns with a warm blanket. It feels wonderful. He doesn’t say a word.

You feel better under the warmth.

The respiratory therapist wheels in the ECG machine. You smile at her but again, no eye contact. She puts more stickers on you. “Hold a deep breath.” The ECG spits out. She takes it and leaves.

The radiology tech wheels the portable xray machine in. You watch his face but don’t bother to smile. He looks everywhere but at you. It’s a bit creepy. Are they all robots? It’s 3 pm, not 3 am. “Lean forward,” says the tech, putting the radiology cartridge behind you. “Take a deep breath and hold it.” He takes the cartridge and leaves.

The nurse is back. Puts in the iv and draws 5 tubes of blood. You are shivering a little. He doesn’t seem to notice. You think about another warm blanket. The iv fluid starts and you can feel it running cold into your arm.

There is a child crying in the ER, in some other room. You start noticing the noises. Machines beeping. People typing on computer keyboards. No one is talking. The kid gives a howl of protest, rising and then is abruptly quiet.

Your hands and feet are tingling and burning. You writhe a little under the blanket. Sensation is returning to your hands and feet. It hurts but it is also good. You were at the point where all your feeling had shrunk to a tiny spark in the center of your chest. As the iv fluid runs, feeling slowly spreads out from that.

The doctor comes in. Grumpy, clearly. “Lean forward.” Listens to your chest. “Sounds clear.”

“It’s been hurting for 5 days. It hurts to breathe. Burns.” You are anxious as hell. BELIEVE ME.

The ER doc gives a little shrug. “Oxygen sats are fine.” He does a half-assed exam. He leaves.

You look at your feet, taking your socks off. Because he didn’t. There are two black spots, a couple millimeters across, old blood. Those are new.

You press the call button.

Time goes by. The nurse floats back in.

“Look. Tell the doctor to look. These are petechiae.” You point to the black spots.

If the nurse had laser vision, your feet would be burned. The nurse glares at your feet. He goes out.

The doc comes in and looks at your feet.

“They are petichiae. I have an infection.”

He gives a tiny shrug. “Your chest xray looks clear. Your labs are normal. You are not running a fever.”

“I am on azithromycin for walking pneumonia. I suddenly felt like all the fluid was running out of my arms and legs. I am worried that I am septic.”

“Blood pressure is fine. You are really really anxious.”

You are furious. It probably shows on your face. You are terrified.

“Could it be an antibiotic reaction?”

Shrug. “No rash.”

“Except the petechiae.” A sign of sepsis.

“I will change the antibiotics. Clindamycin.” He leaves.

You lie back, terrified. He doesn’t believe you. He is sending you home, septic. You will probably die.

The nurse comes in. Removes the iv and unhooks the monitor and the blood pressure cuff. You get dressed, numb and frightened and cold. The nurse goes out and returns. He recites the patient instructions in a bored voice and gives you the first dose of clindamycin.

You walk shakily to the door of the emergency room. To go home. While you are septic and they don’t believe you. You know what happens with sepsis: your blood pressure will drop and then organ damage and then IF you survive you could have heart damage or lung damage or brain damage and you might not anyhow.

You go home.

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No pandas

Today is PANS/PANDAS awareness day. I wrote this a couple weeks ago.

Home
PANDAS PHYSICIANS NETWORK: PANS/PANDAS AWARENESS DAY

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No pandas

I don’t have PANDAS because in the United States we barely believe in it in children and we don’t at all in adults.

I don’t have PANDAS because even though one psychiatrist said I did, he retired, and the next one says I don’t. Then not sure then no. They don’t agree.

I don’t have PANDAS because my primary care doctor won’t read the guidelines even after I have been her patient for seven years.

I don’t have PANDAS because my pulmonologist has never heard of it.

I don’t have PANDAS because it would be a lot easier to put me on a mood stabilizer to shut me up than listen to me.

I don’t have PANDAS because I am labelled difficult because I am afraid to take a mood stabilizer because I do not get a fever or a white count so my main symptom of infection is that other doctors think that I am manic though I am hypoxic and short of breath. They want to fix my mood while I want to not die of pneumonia, so our goals are at odds.

I don’t have PANDAS because I am a doctor and if I had PANDAS my fellow local doctors would feel guilty that they have told each other that I am bipolar and manic for the last 18 years and have shunned me at the county medical meetings and won’t even send me the invitations, except for the one that forwards them. He says he has given them my email and he doesn’t understand why they don’t send me the invitations.

I don’t have PANDAS because Seattle Children’s doesn’t allow the Cunningham Panel to be drawn and they say there is not enough evidence yet.

I don’t have PANDAS because I can’t afford to pay $925 on my own for the Cunningham Panel and anyhow my antibody level is back to whatever is my new baseline, higher than before no doubt.

I don’t have PANDAS because the other doctors are frightened: if I have PANDAS then who else does and if I have chronic fatigue caused by hypoxia and fibromyalgia and it’s related to PANDAS then who else would they have to test and neuropsychiatric is a whole different thing from psychiatric and we swear that we don’t know what causes chronic fatigue and fibromyalgia.

I don’t have PANDAS because I am an adult who lives in the US though if I was in Canada or Europe I could in fact have PANDAS.

I don’t have PANDAS because in the United States we barely believe in it in children and we don’t at all in adults.

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grounded

Poem: grounded

grief is an ox
that stands in the room with me
and overshadows
everything

no
grief
is a plow
pulled by an ox
I try to guide it
in the furrows

no
grief is the heavy ground
the plow turns it
the ox pulls
I guide it
in the furrows

no
I am grieving
I let it be close
I don’t push it
in to an ox
in to a plow
in to the earth
I let it in
I grieve

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vast

Sometimes emotions are vast. I do not think our culture deals with grief very easily. Grief then becomes a vast pit, stuffed inside us. I sent the Falling Angels poems to friends and family. One older friend said that the poems were too sad and was I that sad all the time?

I replied, no, I am not sad all the time. The sadness is in the poems because there are very few people that I know that are comfortable with sadness and grief. So I put it in to poetry, because I do not want to stuff it. We need to let grief come out and let the tears flow and let it go.

For the Ragtag Daily Prompt: vast.

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pebbles

This is for the RDP stone prompt, my prompt.

Small pebbles… except now we have to sing: “One of these things is not like the others, one of these things just doesn’t belong! Can you guess which thing is not like the others, by the time I finish my song!”

And here is a photo for scale.

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nap

I am posting this for today’s Ragtag Daily Prompt: action.

Well, for every action there is an equal and opposite reaction, right? Which could be a nap. This is taken with my phone zoomed from an upstairs window, right in my back yard. Voyeur, yep, that’s me, spying on my Giant Long Earred Yard Rats, also sometimes called Deer.

All of my 911 memories are still swirling around. I think everyone is exhausted and grieving. Please take care of yourselves today and I hope you have a safe place to take a nap, like my Giant Yard Rats.

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Mask refusal in the 1918-1919 influenza pandemic

This is from an article about the history of medicine, about people refusing to wear masks in the 1918-1919 influenza pandemic:

“Adherence is based on three concepts: individualism versus collectivism; trust versus fear; and willingness to obey social distance rules. Jay Van Bavel opines that some countries tend to be more individualistic,16 and therefore more likely to reject rules and ignore attempts by public health authorities to β€œnudge” behavior change with risk messages or appeals for altruism. InΒ collectivist cultures, people are more likely to do what is deemed best for society. Trust and fear are also significant influences on human behavior.17 In countries with political division, people are less likely to trust advice from one side or the other and are more likely to form pro- and anti- camps. This may also undermine advice issued by public health professionals. The last and most difficult to attain is social distancing. Human beings are social animals with bodies and brains designed and wired for connection. A pandemic, in many ways, goes against our instinct to connect. Behavioral psychologist Michael Sanders argues that if everybody breaks the rules a little bit, the results are not dissimilar to many people not following the rules at all.18“

From another article:

“It was the worst pandemic in modern history.

The 1918 influenza virus swept the globe, killing at least 50 million people worldwide.

In the US, the disease devastated cities, forcing law enforcement to ban public meetings, shut down schools, churches, and theaters, and even stop funerals.

In total,Β 675,000 Americans died from the Spanish flu, named after the disease’s early presence in Spain.”

I read a book on the 1918-1919 influenza. It started in the U.S. The photograph that haunts me is the bodies stacked five deep in the hallways of San Francisco Hospitals.

And in a third article:

“The scenes in Philadelphia appeared to be straight out of the plague-infested Middle Ages. Throughout the day and night, horse-drawn wagons kept a constant parade through the streets of Philadelphia as priests joined the police in collecting corpses draped in sackcloths and blood-stained sheets that were left on porches and sidewalks. The bodies were piled on top of each other in the wagons with limbs protruding from underneath the sheets. The parents of one small boy who succumbed to the flu begged the authorities to allow him the dignity of being buried in a wooden box that had been used to ship macaroni instead of wrapping him a sheet and having him taken away in a patrol wagon.”

A CDC article about the history of the 1918-1919 influenza says this:

“The fully reconstructed 1918 virus was striking in terms of its ability to quickly replicate, i.e., make copies of itself and spread infection in the lungs of infected mice. For example, four days after infection, the amount of 1918 virus found in the lung tissue of infected mice was 39,000 times higher than that produced by one of the comparison recombinant flu viruses.14

Furthermore, the 1918 virus was highly lethal in the mice. Some mice died within three days of infection with the 1918 virus, and the mice lost up to 13% of their body weight within two days of infection with the 1918 virus. The 1918 virus was at least 100 times more lethal than one of the other recombinant viruses tested.14 Experiments indicated that 1918 virus’ HA gene played a large role in its severity. When the HA gene of the 1918 virus was swapped with that of a contemporary human seasonal influenza A (H1N1) flu virus known as β€œA/Texas/36/91” or Tx/91 for short, and combined with the remaining seven genes of the 1918 virus, the resulting recombinant virus notably did not kill infected mice and did not result in significant weight loss.14“

The 1918-1919 influenza virus was sequenced and studied in 2005. We did not have the tools before that. Frozen bodies were exhumed with the permission of Inuit tribes to find the virus.

Later, that same article talks about future pandemics:

“When considering the potential for a modern era high severity pandemic, it is important; however, to reflect on the considerable medical, scientific and societal advancements that have occurred since 1918, while recognizing that there are a number of ways that global preparations for the next pandemic still warrant improvement.”

Let us now travel back to a worse epidemic: the plague in the Middle Ages:

“Did you know? Between 1347 and 1350, a mysterious disease known as the “Black Death” (the bubonic plague) killed some 20 million people in Europeβ€”30 percent of the continent’s population. It was especially deadly in cities, where it was impossible to prevent the transmission of the disease from one person to another.”

I am hoping that people will awaken, get their vaccines, wear their masks and stop Covid-19 in its’ tracks, so that our death rate resembles the 1918-1919 Influenza. Not the Middle Ages plague.