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.

Adverse Childhood Experiences 12: welcome to the dark

Welcome to the dark, everyone.

When you think about it, all the children in the world are adding at least one Adverse Childhood Experience score and possibly more, because of Covid-19. Some will add more than one: domestic violence is up with stress, addiction is up, behavioral health problems are up, some parents get sick and die, and then some children are starving.

From the CDC Ace website:

“Overview:Adverse Childhood Experiences (ACEs) are potentially traumatic events that occur in childhood. ACEs can include violence, abuse, and growing up in a family with mental health or substance use problems. Toxic stress from ACEs can change brain development and affect how the body responds to stress. ACEs are linked to chronic health problems, mental illness, and substance misuse in adulthood. However, ACEs can be prevented.”

Well, can they be prevented? Could Covid-19 be prevented? I question that one.

I have a slightly different viewpoint. I have an ACE Score of 5 and am not dead and don’t have heart disease. I spent quite a bit of time thinking about ACE scores and that it’s framed as kids’ brains are damaged.

I would argue that this is survival wiring. When I have a patient where I suspect a high ACE score, I bring it up, show them the CDC web site and say that I think of it as “crisis wiring” not “damaged”. I say, “You survived your childhood. Good job! The low ACE score people do not understand us and I may be able to help you let go of some of the automatic survival reactions and fit in with the people who had a nice childhood more easily.”

It doesn’t seem useful to me to say “We have to prevent ACE scores.” Um. Tsunamis, hurricanes, Covid-19, wars… it seems to me that the ACE score wiring is adaptive. If your country is at war and you are a kid and your family sets out to sea to escape, well, you need to survive. If that means you are guarded, untrusting, suspicious and wary of everyone, yeah, ok. You need to survive. One of my high ACE Score veterans said that the military loved him because he could go from zero to 60 in one minute. Yeah, me too. I’ve worked on my temper since I was a child. Now it appears that my initial ACE insult was my mother having tuberculosis, so in the womb. Attacked by antibodies, while the tuberculosis bacillus cannot cross the placenta, luckily for me. And luckily for me she coughed blood at 8 months pregnant and then thought she had lung cancer and was going to die at age 22. Hmmm, think of what those hormones did to my wiring.

So if we can’t prevent all ACE Scores, what do we do? We change the focus. We need to understand crisis wiring, support it and help people to let go of the hair trigger that got them through whatever horrid things they grew up with. 16% of Americans have a score of 4 or more BEFORE Covid-19. We now have a 20 or 25 year cohort that will have higher scores. Let’s not label them doomed or damaged. Let’s talk about it and help people to understand.

I read a definition of misery memoirs today. I don’t scorn them. I don’t like the fake ones. I don’t read them, though I did read Angela’s Ashes. What I thought was amazing about Angela’s Ashes is that for me he captures the child attitude of accepting what is happening: when his sibling is dying and they see a dog get killed and he associates the two. And when he writes about moving and how their father would not carry anything, because it was shameful for a man to do that. He takes it all for granted when he is little because that is what he knows. One book that I know of that makes a really difficult childhood quite amazing is Precious Bane, by Mary Webb. Here is a visible disability that marks her negatively and yet she thrives.

A friend met at a conference is working with traumatic brain injury folks. They were starting a study to measure ACE scores and watch them heal, because they were noticing the high ACE score people seem to recover faster. I can see that: I would just say, another miserable thing and how am I going to work through it. Meanwhile a friend tells me on the phone that it’s “not fair” that her son’s senior year of college is spoiled by Covid-19. I think to myself, uh, yes but he’s not in a war zone nor starving nor hit by a tsunami and everyone is affected by this and he’s been vaccinated. I think he is very lucky. What percentage of the world has gotten vaccinated? He isn’t on a ventilator. Right now, that falls under doing well and also lucky in my book. And maybe that is what the high ACE score people have to teach the low ACE score people: really, things could be a lot worse. No, I don’t trust easily and I am no longer feeling sorry about it. I have had a successful career in spite of my ACE score, I ran a clinic in the way that felt ethical to me, I have friends who stick with me even through PANDAS and my children are doing well. And I am not addicted to anything except I’d get a caffeine headache for a day if I had none.

For the people with the good childhood, the traumatic brain injury could be their first terrible experience. They go through the stages of grief. The high ACE score people do too, but we’ve done it before, we are familiar with it, it’s old territory, yeah ok jungle again, get the machete out and move on. As the world gets through Covid-19, with me still thinking that this winter looks pretty dark, maybe we can all learn about ACE scores and support each other and try to be kind, even to the scary looking veteran.

Take care.

I don’t think I realized what I had gotten myself into, but it seemed like the potential for fun and insanity were there in equal parts

sometimes you know things
without knowing

sometimes you no things
without noing

sometimes you know things
without noing

sometimes you no things
without knowing

sometimes you koanow things
without knowing

sometimes you no things
without koanowing

sometimes you koanow
without koanowing

sometimes you koanow

snow

also published on another site today.

you know you are hypoxic when

Darn it. I went from two months of no hiking or beach walking to too fast too much… oops. Injured left tibialis anterior. Oxygen AND a boot. Dang blang curses… guess I have to behave slightly better.

Another outfit not appropriate for work: on the morning before the boot…. I am holding out my hand to be kissed. That area on my lower left shin is red… and later in the day I got in with ortho and got the boot.

flowered dress with long beads and above the elbow white gloves, hey, put that oxygen back on!

Fierce woman

Ok, who is this fierce woman?

It is not me.

It is not my daughter.

It is a relative.

It is not my mother.

It is not my grandmother.

I have pictures of all of these women with that expression.

This is Mary Robbins White, my grandmother’s mother.

This is the line of women: mother to daughter all the way down.

What is passed from mother to daughter and mother to son? Besides the fierce expression?

Mitochondria. The mitochondria are only in the egg, not in the sperm. My grandparents, had three children, two boys and my mother. My mother passed the mitochondria to me and my sister, but the men would not contribute mitochondria to their sons or daughters. It is amazing to look at that serious face with intensity and concentration and see that passed down to my daughter, my son and my niece….

Guess who is who in the following photographs. I took two of them.

outfits inappropriate for work 3

Ok, maybe it is not inappropriate for work. But it would be a little weird for work… I was going in the woods with my oxygen tank. “Local doctor of 21 years found eaten by cougar, which then died because it couldn’t digest the oxygen tank.” Heh.

Listening to this, fabulous!!!

covid 19 two

From November 20th, 2020:

My ex called Saturday. Early, which unusual. I thought he was calling to say his mother died.

Nope.

He is an RN at a nursing home. “We’ve gone from one Covid 19 patient to 55 in the nursing home in one week. And they installed a new computer program on Tuesday that makes everything take twice as long. I quit.”

Actually he gave two weeks notice.

He called our kids yesterday. He has Covid 19. However, they are so short of staff that he is working. On the Covid 19 ward of the nursing home.

____________________

In my clinic, we are struggling with watching people travel for Thanksgiving. We have decided. If someone travels or has Thanksgiving with other households, we will offer a zoom visit or a reschedule in two weeks. We do not want them to expose others in clinic. And if we get it or are exposed, we are closed for a minimum of two weeks.

____________________

He called me. Today 60 out of the 70 nursing home patients have it. All of the staff have it. The staff are working anyhow because there is no one else.

On covid-19

I am going to post a series of short essays I wrote on another site at the end of 2020. Because we have to work together and these are relevant. I will post one every day or two.

From Tuesday November 24, 2020:

I have just had a call asking for a Covid-19 test.

Not for symptoms.

Nope. Traveled from Washington to California with a buddy and “My sister thinks I should be tested.”

Me: “Oh, does your sister want you tested before you come to Thanksgiving?”

Patient: “Uh, I think so.”

Me: “First of all, the priority is for people who have symptoms or have been exposed. Secondly I am not ordering a test for someone who has no symptoms, chose to travel and then thinks it’s ok to go to a Thanksgiving dinner in another household if they get a negative. It’s not ok. You can test negative one day and be shedding virus the next. The quarantine after exposure is 14 days. The medical advice from the CDC, from the surgeon general and from me is STAY HOME.”

Others are asking for antibody tests. We don’t know if the antibodies mean you aren’t infectious. We don’t know how long they last. Typically with other covid viruses they don’t last long. In contrast, chicken pox virus gives lifelong immunity. We don’t know if a person can get Covid-19 again, though there have already been some cases. No, I won’t do an antibody test because the person “Just wants to know.”

STAY HOME STAY HOME STAY HOME.

be careful who lasers your hoohoo

be sure whatever you do do
you’re careful who lasers your hoohoo
vaginal rejuvenation
should not be self done by the patient
the person who fires the laser
should having training and not just in tasers
hoohoo lasers are selling like hotcakes
making money for yahoos who clambake
no yahoo should do do your hoohoo
else you and your honey will boohoo

written in 2018.

I don’t make this shit up: http://www.cbc.ca/news/opinion/vaginal-rejuvenation-1.4782406
hoohoo: https://www.urbandictionary.com/define.php?term=hoohoo