Covid 19 long term and PANDAS

It is not looking like I will be able to return to medicine. Based on the current research, the PANDAS reaction will get worse with each infection. I will be moving in to a hamster ball next week, (*&^*&(*&*&^.

You, gentle reader, can work your way through the research, which I am going to present to you. You have no reason to do this unless you have chronic fatigue, fibromyalgia or myalgic encephalopathy or post covid syndrome. Or you know someone with one of those. I think there are a few people out there.

First, read the guidelines for treating PANS/PANDAS.

https://www.pandasppn.org/guidelines/
https://www.pandasppn.org/jcap2017/

The article about the three antibodies involved is in this section:
https://www.liebertpub.com/doi/full/10.1089/cap.2016.0148

“Evidence for group A Streptococcus (GAS)-specific cross-reactive antibodies having affinity for neuronal components (including receptors) in the basal ganglia has been demonstrated in human and animal studies (Husby et al. 1976; Kirvan et al. 2003, 2006a, 2006b, 2007; Hoffman et al. 2004; Yaddanapudi et al. 2010; Brimberg et al. 2012; Lotan et al. 2014). Sera and immunoglobulin G (IgG) from SC and PANDAS patients known to bind to components of the GAS cell wall have also been shown to cross-react with components of neurons in the basal ganglia caudate, putamen, and internal segment of the globus pallidus (Kirvan et al. 2006b). Antineuronal IgG antibodies binding to multiple targets, including lysoganglioside, tubulin, and dopamine receptors, have been reported to be elevated in patients with SC and PANDAS compared to controls (Kirvan et al. 2003, 2006a, 2006b, 2007; Cox et al. 2013, 2015). Targeting of such antibodies to dopaminergic neurons in the substantia nigra and ventral tegmental area in the basal ganglia (as well as other cortical neurons) was confirmed in transgenic mice expressing a chimeric antineuronal autoantibody containing VH±VL regions cloned from a patient with SC (Cox et al. 2013).”

All right, three antibodies. So WHAT, doctor?

The antibodies are to dopamine, tubulin and lysoganglioside.

Here is an article looking at chronic lyme disease.

https://www.sciencedirect.com/science/article/pii/S2666354619300158

Basically that article looks at four groups. No lyme disease, one episode, more than one and chronic. No dopamine antibodies. But the tubulin and lysoganglioside antibodies are not present in the healthy folks and are present in the lyme folks, highest in the chronic lyme. Those two antibodies are associated with chronic fatigue (the tubulin) and fibromyalgia/gluten and sugar intolerance (the lysoganglioside).

Now wrap your head around that one in ten severe infections can trigger chronic fatigue. ANY INFECTION. I am normal, I just bloody well got antibodies early because my mother had tuberculosis through the whole pregnancy. So I was born with PANS. Then, smartied that I am, I chose to be a physician, meaning I get exposed to infections. Guess I am not going to be doing Doctors Without Borders, right?

Treatment, well, that is complicated. I think it depends on the person’s profile: which antibody is giving them the most trouble. I am a special case, because I have all of the antibodies firing full bore at once. Which has forced me to be extremely creative about how to survive this now and in the past.

First off for the treatment: DO NOT PUSH THE CHRONIC FATIGUE. Because the tubulin is damaging not just skeletal muscles but the heart muscle as well. So even with squeaky clean coronary arteries, pushing through the chronic fatigue could trigger a heart attack or broken heart syndrome. And we aren’t (yet) measuring these antibodies routinely. Hell, I hadn’t heard of tubulin since the distant mists of college until 2 weeks ago.

Secondly: if there are neurological symptoms, that is, any two or more of manic/word finding difficulty/ADHD/OCD/emotional lability/oppositional defiance/clingy/brain fog/yeah I forget the rest, then the anti-dopamine antibodies are present. In addition to speeding the thoughts, I think that they speed cell metabolism. I always drop ten pounds the first week. So, vitamins are vital. If your vitamin K drops, you may clot. Also vitamin D for teeth and vitamin B12 — if it’s low you can get Guillain Barre. The myelin sheaths unwind. Ok, that could also be thiamine or folate or all three. Bleeding strokes from low vitamin K.

Third: I don’t know if it’s just me, but the things I have to change in my diet are NO SUGAR and NO GLUTEN. I tried rice yesterday and it was ok, so I think it’s gluten and not just all bread/rice/potatoes/pasta. I have mostly been eating meat or cheese with kale/collards/mustard greens/parsley or turnip greens. All of which are vitamin rich. I have not had bread in three weeks and have been not even eating much fruit. Blueberries and grapefruit are safest. In two of my bouts of this, with strep A pneumonia, I would have fluid shifts when I ate sugar or gluten. Normal urine output is up to 2 liters. I had 10. That was documented in a 24 hour inpatient observation, though the doc did not actually notice. I did. I also figured out how to get it to stop, by stopping carbohydrates as much as possible. Greens only, because they are food sources of vitamin K. At any rate, it’s worth a try for other people. I use electrolyte tabs with fluids too, NUNN tabs or Airborne.

There’s other stuff. But I am tired and my chest hurts. Take care of yourself and each other.

biotics explained

Are you confused about BIOTICS? Is your neighbor taking more Mysterious Healthy Pills than you? We can help! We are marketers posing as scientists from Mega Super Good For You and the Planet CoreValuePoration! Look! We have white coats and ours are clean!

PROBIOTICS: These are GOOD and GOOD FOR YOU! You should take them, you should take ours! We have capsules and we stuff them full of good-for-you biotics. We don’t call them bacteria, because bacteria are gross and yuky and cause infections. You know ours are best because they are the most expensive, the health food co-op sells them, and they have to be refrigerated. Take one everyday! You can never have too many biotics in the teaming mass of millions in your gut!

Conbiotics: These are BAD FOR YOU! They are sold by the other companies. They lie. They get biotics from prisoners poop. They will turn you criminal. They will make you fight with your mother and disinherit your first born, lie, drink too much and cook meth. You will know they are conbiotics because they are cheaper and not refrigerated. And some of the biotics in their tablets are bacteria! Do you want to take bacteria? DEAD BACTERIA, they don’t even give you live ones.

Antibiotics: THESE KILL PROBIOTICS. BY THE MILLIONS. THESE ARE PASSE, OUT OF FASHION, EVIL AND YOU REALLY DON’T WANT THEM (unless you have strep throat or pneumonia or sepsis, and even then, the antibiotics suck because the sepsis mortality rate is 28-50%, THAT MEANS HALF THE SEPSIS VICTIMS DIE EVEN WITH ANTIBIOTICS, DOES THAT PROVE THEY SUCK OR WHAT?)

UNCLEBIOTICS: Now MEGA SUPER GOOD FOR YOU AND THE PLANET COREVALUEPORATION is developing THE NEWEST AND BEST BIOTICS OF ALL! UNCLEBIOTICS ARE BETTER THAN ANTIBIOTICS BECAUSE THEY ARE MALE AND UNCLES ARE MORE FUN AND RARER THAN AUNTS AND THEY ARE WAY LESS LIKELY TO HUG YOU INTO WEIRD SMELLING BOSOMS, except that uncle that wears the boa and the weight lifter uncle, too many illegal steroids, he has fine manboobs.

SUBSCRIBE TODAY TO OUR MONTHLY POOBIOTIC, WE MEAN PROBIOTIC SERVICE AND YOU WILL RECEIVE FREE SAMPLES OF UNCLEBIOTICS AS FAST AS WE CAN GET THE UNCLES TO POO AND THE RATS TO SURVIVE THE CAPSULES.

All ingredients generally recognized as safe http://www.fda.gov/Food/IngredientsPackagingLabeling/GRAS/, you should listen to us, don’t listen to your mama, she says “Don’t eat poo!” but what do mamas know, Mother’s Day is so OVER for the year and we have WHITE COATS!

Deep Vein Thrombosis

Our clinic had a band back before 2009. Me and 4 of the nurses. We were into heavy metal. This was when I was working for Port Townsend Family Physicians. The county let me go and PTFP changed their name. Could not have been because we wore our band regalia to work, right? After all, it was Halloween.

Maybe they were afraid that the songs would catch on.

Little blue pill

Don’t code in the waiting room

Evidence based BM

Probiotics make you psychotic

Better that way

Alcohol is better than benzos

Mr. Sable is Unable

Buprenorphine: better n morphine

EMR means Eat My Rear

The 18 Patient Blues

Idaho Gigolo

I played flute and saw. J played fiddle and air siren. The others, well, you should ask them. I think all the tapes got burned by the hospital. Too bad, so sad.

I can’t credit the photographer. I don’t know who took it.

Quota

Quota

honestly
I feel despair
when I try
to think about the new schedule

Twenty four slots
Of 20 minutes
See three people
For 40 minutes
Twenty on the schedule

Unanswered questions
Wake me on Sunday morning
If I am called to a labor patient
Must I make up that clinic face time?
What of holidays?
The clinic is closed.
Night call is nowhere addressed
Will they hire more and more
Who don’t take call
Until I am the last woman standing
Red rimmed eyes staring
Numb with fatigue

What of my nearly deaf patient
Who reads lips
May we take forty minutes?
All the fairly deaf elderly?
New parents, anxious
Questions pour out like
Coins from a jackpot win
What of the tearful brokenhearted
And anxious?
I shrink at the thought
Of crushing their hearts
Into twenty minutes

And what if I’m sick?
(sick leave & vacation all one)
It’s not a holiday if I’m on call
No make-up day off
If I cancel clinic
For illness
Do I make up those days
A quota of patient face days

I am in the factory
The mines
People are the shirts I must sew
The tons of coal I must load
I must meet a quota

Doctors die younger
Our life is measured out
In patients
I won’t let the quota
Kill my love

Revolution in prior authorizations

I had a small one doc family practice clinic for ten years. Spent more time with patients. The trade off was that if they need a prior authorization, they had to come in for a visit. I would call the insurance company from the room face to face counselling and coordination of care and all that crap. This did a number of things:

1. I could bill for the time.

2. The patient saw how the insurance company treats us and our offices. The rep on the line would try to call me by my first name since doctors rarely call. I would say, “No, please call me Dr. Ottaway.”

3. The patients sometimes had called their insurances already and been told “Have your doctor call.” When I would call, the company rep would sometimes say, “We don’t cover that.” The patient would be outraged and say, “But I called YESTERDAY.” The rep would say, “I only talk to doctors. The part of the company that talks to patients is a different part.” The insurance companies can’t triangulate their way out of that.

4. I would end the call by saying, “This has been a face to face with the patient call, you have been on speaker phone and I am documenting the call and the time in the patient’s chart.” At first the calls took 25-30 minutes. Some companies apparently flagged me, and would say “Yes.” if I called, and get me off the phone as fast as possible. They really do not like it being documented in the chart.

5. Insurance companies sometimes drop patients on purpose because the person has gotten more expensive. I had a snow bird from Alaska whose insurance had dropped him. He said he’d paid on time. I said, come in if you want and I will call them. I spent 45 minutes on the phone where they made multiple excuses, lied (we can’t send you a copy of his insurance because we don’t have a fax after they’d said he was not allowed to leave Alaska and I said, “For how long? What do you mean? You don’t insure him if he’s out of the state? Send me a copy of his insurance contract!”) I finally realize that they have dropped him on purpose because he’s been diagnosed with diabetes. I say “Ok, look, I am staying on the phone until he’s reinstated and I don’t care how long it takes. And if you hang up on me I will contact the insurance commissioner in Alaska and Washington states.”

6. Patients are truly outraged at how a physician is treated when she calls an insurance company herself. I have to give my name, my NPI number, my address, my phone number, my fax number, the patient name, the patient address, the patient phone number the patient insurance number and sometimes have to do it every time someone transfers me. When they see me spend 25-30 minutes on the phone to get a prior auth, especially if it is refused, they are up in arms.

I think it would be truly revolutionary if every doc in the country called an insurance company with a patient in the room and documented the conversation in the chart. Wouldn’t that be fun?

Gonna be a revolution, yeah…..

questions for equality

For the Ragtag Daily Prompt: book. My second entry for the prompt today.

Skimming the reader’s guide at the back of a book today, I read one question and halt. Here:

“You’ve managed such an extraordinarily successful writing career along with being a full-time father. What has it been like to juggle the two?”

Yes, what has it been like? Because I changed the gender. I can’t imagine this question being posted to a male author. The layers and the sexism in this question are spectacular.

First of all, what is a full-time mother? Does it mean one who is “home” with the kids? Not working “outside” the house. Maybe we should call it at work with the kids if it’s full-time. If she is a writer is that work but it’s not work if she is a housewife? Is she a “full-time” mother with a writing hobby unless it’s successful and then she’s a “full-time” mother with a successful career? How are they defining success?

What is a full-time father? Does it mean the same thing?

Are there part-time mothers? Is a mother who goes to work outside the house a part-time mother? I work. My husband was the househusband. We also had some daycare. Was he a full-time father? Was he a slacker because he took care of the house and the kids and played golf? Our son was six months old when I started my family practice residency. Was I a part-time mother?

The question feels to me like more of the same gender discrimination and devaluation of both genders. A woman who is a “full-time” mother AND a successful writer, wow, that is made noble. But I have never heard a man called a “full-time” father or any questions of a successful man about how he juggled his fatherhood and his career.

It remains infuriating.

The book is Anna Quindlan’s every last one, Random House, 2011 and the Random House Reader’s Circle asks the questions.

Well, gentle readers? Are you a full-time or a part-time parent? Why? Was your father a full or a part time father and was your mother full or part time? And do they mean the same thing?



crossroads

Regardless of how the vote goes, I will keep speaking up.

It is so painful to have woman after woman saying, “I have stories too.”

And to the “nice” men who say, “I can’t believe that sort of thing. I can’t read about it. It hurts too much.” YOU are silencing too. YOU are part of the problem. As long as YOU refuse to listen, refuse to speak up, refuse to read about it: YOU PRETEND TO YOURSELF THAT IT IS NOT HAPPENING TO YOUR WIFE, YOUR SISTER, YOUR MOTHER, YOUR DAUGHTER. YOU PRETEND THAT IT ONLY HAPPENS TO “THOSE” WOMEN, THAT THEY ARE FEW, THAT IF THEY HAD TAKEN PRECAUTIONS IT WOULD NOT HAVE HAPPENED, THAT YOU ARE PROTECTING “YOUR” WOMEN.

Speak up, “nice” men. Are you ASKING the women in your life? Or are you silencing them?

Sweet Honey in the Rock: Joanne Little.

 

speaking up 3

Here are speaking up and speaking up 2.

More events in my life:

I am on the metro in Washington, DC. It is not rush hour. I am reading my book.

I suddenly realize  as the metro stops, my car is empty. I am the only one in the car. One man gets on. I am hyperalert. He walks down the car and sits next to me.

The car starts up. I stare at my book.

“Hi.” he says, “What’s your name?”

I don’t answer.

“C’mon. What’s your name?”

“I am reading my book. I don’t want to talk.”

“C’mon, baby, be nice.”

I stand up, purse and book. “Excuse me.” I step by him and stand at the metro car door. I get off that car at the next stop and move to the next one with people on it. Shaking with both the threat and anger, that I have to deal with this.

2. I take a dance class in Washington, DC. I work at the National Institute of Health. I leave my car at NIH and ride the metro.

One night I get off the metro at NIH and I am riding up the escalator, with my backpack.

A man, clearly drunk, steps up on the escalator beside me, and says “Hi, baby, what’s your name?”

“LEAVE ME ALONE!” I snarl and stomp up the escalator. It is dark and there are very few people at the stop and in the lot. I am in danger from this drunk.

I am walking fast at the top, away from the escalator, when I hear running steps behind me. WHACK! He takes a swing at me and runs off. He hits my backpack and not me. I am screaming at him.

He is gone. I run to my car, get in, and sit there, hands on the wheel. Shaking. There is a part of me that wonders what I would do if he crossed the road in front of my car.

My next class is not dance. I take tae kwon do.

3. I have used my tae kwon do once so far. Where? In first year medical school.

No way, you say.

Yes, way.

We have lecture after lecture in the same hall. We usually sit in the same places. I am newly married. The guy behind me starts tickling my neck during a lecture, with a pen. I twitch a couple times and then hear muffled giggles and realize that it’s the person behind me.

I stiffen and wait until I am really ready. Breathe. The tickle comes. I snap a basic block back and forward: and have his pen.

He SCREAMS!

The whole class turns towards us. The lecturer stops, staring. I am facing forward, holding the pen down low, not moving. He has the entire room staring at him, everyone but me. He doesn’t say a word. You could hear a …. pen…. drop.

The lecturer shakes his head and continues.

I keep the pen.

Just think, he’s a doctor.

I took the photograph when we were in Wisconsin. I went to UW Madison. I like being a badger.

Speaking up

For yesterday’s Ragtag Daily Prompt: justice.

I keep hearing “Why didn’t she speak up sooner?”

I spoke up. I was 7. The abuser was a neighbor. Nothing was done. I thought it was my fault, that I was not a virgin, and that at age 7 I was pregnant. I did not understand puberty. I spoke up to my mother, who dismissed it.

So I did the only thing I could: I tried to protect myself and my four year old sister. I told her never ever to go near that neighbor. And I never went near him again.

I was taken for a well child check a month or two later. I didn’t say anything but I thought that surely the doctor would have noticed if I was pregnant, so I must not be.

I grieved on the school bus, thinking that I was the only girl who was not a virgin. I was wrong about the not a virgin, but I also was probably wrong about being the only girl.

I didn’t even realize that hello, I was seven, it was not my fault, I didn’t even understand what was happening. I didn’t understand until I was in college and heard a radio program about how women who are raped feel guilty. Here is a poem about that realization: The bacon burning.

So do you think I spoke up after that? Why would I? No one helped me and I was silenced. I learned this lesson: no one will help and I am on my own. I did speak up in medical school: Make a difference.

Where is justice? And do you really want us ALL to speak up now? About ALL of it?

When I was in my early teens, a friend of my parents french kissed me. He said, “I wanted to be your first french kiss.” Hello, I avoided him after that and did I want a french kiss from an old friend of my parents? He had a PhD but no boundaries, no emotional intelligence and poor ethics.

Shall I go on? In college I worked in two labs: both fruit fly labs. In one the graduate student was professional, courteous and quickly gave me a raise. In the other, I never saw the professor again and I was ignored. I went to resign from the second. The PhD professor said, “What do you plan to do after college?”

“What do you mean?” I asked.

“Do you plan to get married and become some man’s cow?”

Oh, really? Do you Mr. PhD professor refer to all married women as men’s cows? Would you have the same conversation with a male student? I quit. I don’t like you or your lab and that sort of comment reinforces my dislike.

In medical school we had two female physicians on the faculty. One was married but no children. Residents joked about her, that she had the balls in the family, because they were both physicians. The other was not married, an OB-gyn. We asked her to speak to our Women in Medicine group about children and career.

“If you want to be taken seriously as a physician, you should not have children.” she said.

I asked, “What if we have a house husband?”

“No man’s ego could stand up to that,” she replied.

I have children and a career.

I had worked in a clinic for a year and another provider talked to me. “Do you know that they are paying the other physician (male) twice what they are paying you?”

Oh, really? I set up a meeting with the administration.

“Oh, the male physician is the clinic director, that’s why we pay him more.”

This was a lie. I had been in the clinic for a year and there had never been one word that he was clinic director. The next year they standardized paying us by RVUs: his salary went down and mine went up. And so justice was done, right? No, the male physicians are given jobs such as head of hospice or medical director and extra money. Do they work harder? The jobs are not offered to the women physicians.

A male physician at the hospital was made chief of staff. He asks me in the hall, “Do women physicians just quit because they want to stay at home with children?”

“Do you want a serious answer?” I said. He looked surprised. We went to an office and I discussed that almost all the hospital staff were women at that time and that they have a different relationship with female physicians than male physicians. Most of the administrators were male, white males.

So really, do you want all the women in the US to speak up? Maybe we all should. The above is not anywhere near an exhaustive list, it is a start. This is just from thinking about it for two days. I can fill pages…..