Tag 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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Pediatric autoimmune neuropsychiatric syndrome

Yes, well, PANS rather than PANDAS. PANDAS is just a cooler acronym. Who wants a syndrome named after a kitchen implement? Not me. And probably tuberculosis (my mom’s) was the initial insult and then I was one of those kids who gets Strep A at least yearly. My daughter too, but my son only had Strep A once.

This is actually Pseudoautoimmune. That is, the antibodies that show up to Strep A attack parts of ourselves. It buggers up the acronym so they are not calling in PPANS. Yet. And eventually they will have to drop the Pediatric, so then it’s back to PANS. Oh, well, I can live with a stupid acronym.

My current theory is that the four antibodies that they’ve found so far are an interesting back up crisis system. Either stress or infection can set them off. Once the antibody levels are high, a person gets

1. Either brain fog or some variation of ADHD/OCD/Manic-depressive/TICS/Oppositional Defiance/etc. The brain fog can be labeled depression or memory loss, partly depending on the age of the person.

2. Muscle weirdness: either super strong/super endurance or slow twitch/fast twitch/both muscle dysfunction. With slow and fast twitch muscle dysfunction, theoretically that would be a source of at least some of the chronic fatigue. Chronic fatigue pretty much happens over night and is triggered by one in ten severe infections and/or stress. Though possibly more with Covid-19. The latest estimates are 30% of everyone infected has some form of Long Covid.

3. Anti lysoganglioside. I am still studying lysogangliosides. They lyse ganglions. In theory if this blocks the lysogangliosides, there could be a higher risk of cancer. If the ganglions are lysed more, well, more brain dysfunction and memory loss. I also noticed that I had tremendous muscle pain if I ate the wrong things. This could then be the mechanism for some of the fibromyalgia people.

How to fight this?

It’s not going to be popular in medicine, particularly allopathic, because the main treatments that I can think of are NOT DRUGS.

1. Look for infection and treat it. Penicillin is cheap. High dose if the person doesn’t respond. I don’t look septic when I am near septic: no elevated white blood cell count and no fever. It’s the urine output multiplied by 5, that is, 10 liters instead of 2 liters in 24 hours, that is the clue. This time I did not get to that point and it was milder. Though I need oxygen.

2. Quiet the immune system. Teach the slow breathing that we are using for chronic pain and our anxious people and PTSD veterans. Going from the ramped up hyper crazy sympathetic nervous system state to the quiet relaxed parasympathetic nervous system is a skill that I think anyone can learn. The immune system calms down in the parasympathetic state and antibody levels will drop. The naturopaths want to give tons of pills (that they sell from their clinic or get a kick back from the on line company) for “immune dysfunction” but most of it is crap. Yes, crap. So the naturopaths won’t like this idea either.

3. For the anti lysoganglioside, I’ve treated this by changing my diet. When my antibodies are high, I have to keep my blood sugar as low as possible which means I go keto. As the antibodies come down, I can add foods back in. I am eating everything now except gluten. The gluten is annoying but Things Could Be Worse. Lots worse. This time I figured out that gluten, fructose and sucrose were culprits but not lactose and as I get better rice, potatoes and corn are fine. I dislike soy and always have, except for soy sauce and tamari. Tofu tastes like squishy cardboard to me, yuk. The gluten thing may get better, but since it appears that the baseline of the antibodies rises with each infection/attack, it might not. I will ask for celiac testing in January if I haven’t improved by now. I am not a “bad” celiac who gets terrible symptoms if there is a whiff of gluten. A little doesn’t bother me. French toast two weeks ago brought back the diverticular symptoms and kept hurting for a week. This did motivate me to hold off on gluten. Especially in the holidays and traveling. Again, everyone makes different antibodies, so the food patterns could be highly variable in different people. How very very interesting.

4. Treat the psychiatric stuff. If antibiotics and slow breathing and other parasympathetic exercises don’t help the person, then add the psychiatric drugs. But I’d try the above three first, unless the person is suicidal or threatening others. I am a drug minimalist. Eat food, exercise, have friends, work some, play lots and avoid pills. Including vitamins and supplements.

And that’s the basic plan for treating PANS. The symptoms of Long Haul Covid-19 bear a strong resemblance to my four pneumonias: brain fog or psychiatric problems, shortness of breath, fatigue, muscle pain. Therefore I would try similar treatments which may help some people with Long Haul Covid-19, chronic fatigue and fibromyalgia.

We will see if I make any headway at all.

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For more about PANS/PANDAS: https://home.liebertpub.com/news/revised-treatment-guidelines-released-for-pediatric-acute-onset-neuropsychiatric-syndrome-pans-pandas/2223

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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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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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Covid-19: Emotional weather

I do not think of emotions as bad or good. None of them are bad or good. They are information, controlled by electrical impulses and hormones, evolved over millions of years (or endowed by our creator, for those who swing that way).

I don’t dismiss emotions. I listen to them.

I think of myself as an ocean. There is all sorts of stuff happening in the depths that I don’t understand. Probiotics, for example. I don’t take them. If not for penicillin, I’d be dead many times over, from strep A pneumonia twice and other infections. I don’t think we understand probiotics yet. We don’t understand the brain, either.

The emotions are the weather in my life. I don’t really control them but they don’t control my ocean, either. Some days are sunny and gorgeous and then a storm may blow up. I am afraid of hurricanes, one destroyed my grandparents’ house in North Carolina, on the outer banks. I think all the cousins still mourn that house. And I miss my grandparents too, all of them. And my parents and my one sister.

See? The weather got “bad” there for a moment, but it isn’t bad. Storms have their own beauty though we hope to batten the hatches and that not too much damage is done. Maybe there is rain, scattered showers, sun breaks, a lenticular cloud. In the Pacific Northwest on the coast, the weather can change very quickly and we have microclimates. My father lived 17 miles away, but inland from me and in a valley. It was warmer in the summer and colder in the winter.

My goal with my weather emotions is to pay attention to them, let the storms blow in and out, and try not to harm anyone else because of my weather. When my sister was in hospice, we had a sign up in my small clinic. It said that my sister was in hospice with cancer and that clinic would be cancelled at some point with little warning. Patients were kind and gentle with me. And then it was cancelled, when she died. I got cards from people. They were so kind, thank you, thank you, and I could barely take it in. My maternal family then dealt with grief by having lawsuits. I don’t think that is a good way to deal with grief, but we just see things differently. Maybe it’s the right way for them. I don’t know.

Whenever I was having internal emotional weather that stirred me up, I would tell my nurse or office manager. Because they will sense my weather and need to know what is up. I had enormous support from them during a divorce, while my partners treated me horribly. My nurses and office manager knew me and my partners didn’t. My partners distanced me as if a divorce were catching. Whatever. Their loss.

Sometimes patients sensed that I was upset. I could tell by their faces. If they didn’t ask, I would. Bring the emotions out. Reassure them that I AM grumpy but not at them. Stuff in my own life. No worries.

Sometimes clinic is about a patient’s weather. They ask if they can tell me something. Often it is prefaced by “Maybe I need an antidepressant.” or “I feel really bad.” When they tell the story, usually I would say, “I think it is perfectly reasonable and normal that you feel angry/hurt/shocked/horrified/grieved/upset.” And then I would ask about an antidepressant or a counselor and most of the time, the person would say, “Well, I don’t think I need it right now.” What they needed was to know that their weather was NORMAL and REASONABLE.

I am seeing things on Facebutt and on media saying that mental health problems and behavioral health problems are on the rise. Maybe we should reframe that. Maybe we could say, “The weather is really bad right now for everyone and it’s very frightening and it is NORMAL and REASONABLE to feel frightened/appalled/angry/in denial/horrified/confused/agitated/anxious or WHATEVER you feel.” This weather is unprecedented in my lifetime, but as a physician who had very bad influenza pneumonia in 2003 and then read about the 1918-19 influenza, I have been expecting this. Expecting a pandemic. Expecting bad weather. This will pass eventually, we will learn to cope, be gentle with yourself and be gentle with others. Everyone is frightened, grieving, angry, in denial or in acceptance. The stages of grief are normal.

Hugs and prayers for all of us to endure this rough weather and help each other and ourselves..

I took the photograph in color. My program made a black and white version. It looks like the back of a stegosaurus to me, a dinosaur now living as a mountain.

For the Ragtag Daily Prompt: rainbow. Because sometimes the rain and sun combine to make a rainbow.

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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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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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pigs and fishes

is it ok

if I don’t make sense for a little while?

this is hard

it’s really hard
sometimes
to communicate

I never did
join the mainstream
of medicine

I went to class
to medical school
and wondered
and noticed
that the classes resembled
descriptions of cults
how they train people

and I thought
I am not joining any cult

and I kept my mouth shut

in the elevator
when another student says
“The other day
I threw out all of my husband’s plaid shirts.
I hate them.
They are too low class.”
If he loves them, you’ve hurt him, right?
and I think
I could say
“Yes, I hate it
when my husband
wears my plaid skirt
he stretches them all out
and ruins them.”
I would be outed
even more than I already am
as weird.

I don’t say a word
I just think
words

Medical school is four years
Residency is three
I am quiet there too
impression that I am shy
which is a lie
even so, the faculty fear me

I hear, 25 years later

and I am surprised

5 foot four
130 pounds

what the hell is there to fear?

though a boyfriend says
“You turn into an ogre
when you are angry.”

but I am quiet
in medical school
in residency
except when a patient
needs me
to speak

morph to ogre
morph to werewolf
if needed

as I get older
slowly
slowly
I learn
more subtelty

mostly from my children
who are subtle
and very very smart

at any rate

I never bought in to
the give opioids to everyone

and eventually
it turns out
that my intuition
or instinct
or whatever the hell you want to call it
study of addiction from the experience
and reading in college
matches
the studies
that come out

now I have another one
an intuition

the data is catching up with me

it’s funny
in my small community

I feel so lonely
after 21 years
mother’s death, sister’s death, father’s death
divorce
single mother 2 children
niece don’t go there
I am labeled by the medical community
I hear that the senior doctor
in the community
tells a woman midlevel
at a party
that I am crazy

maybe so

but I was right about opioids

pigs and fishes

is it ok

if I don’t make sense for a little while?

maybe
just maybe

they could listen to me this time

but I don’t think

they
will

that would be ok
but it is hurting people
and I can’t bear that

so I put myself
back in the traces

once in a massage
I thought
I can’t bear this
I am not strong enough
and suddenly I was in a dream world
where my back was enormous
huge
unending
and I thought, oh, I can bear this
thank you
I think

I put myself back in the traces
I am an ox
I plant my hooves

I begin
to pull
hard

pigs and fishes

even as I cry

The photograph is from 2014. Two pairs of glasses frames ago….

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heart of clay

I look for a broken heart on the beach. I nearly miss it, but here it is. I nearly miss it because it is so large. A clay heart, broken all the way through.

Here is a stealthie with my foot for scale.

Shoe selfie for scale, at the base of the broken clay heart.

Part of the cliff has recently collapsed. The heart must have broken during the slide. It will wash away in pieces now. Here is the cliff and you can see the scar of the slide. And the broken heart.

broken clay heart in the wall of the cliff, with the scar of a slide collapse

I tried walking the beach without oxygen. I did pick up rocks. I took a pulse oximeter with me. Carrying maybe three pounds of rocks, my oxygen saturations drop. Not well yet. 87 or below is not ok. It feels awful and exhausting too. Like being at a high altitude and not used to it. A pulse of 130 also does not feel great, normal being 70-100.

Pulse oximeter, with pulse 130 and oxygen saturation 87.

Thank goodness for the oxygen and the tanks that let me be mobile. Blessings and take care of your heart.