Tag Archives: OCD

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Autoimmune OCD and my daughter shops my closet

https://www.nature.com/articles/s41398-021-01700-4

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.

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myalgic encephalopathy

Myalgic Encephalomyelitis, actually. I put encephalopathy on the Ragtag Daily Prompt, but …. my brain is still a bit fuxxy. Yeah, tried to type fuzzy. It’s sometimes annoying and sometimes funny. I have a little trouble with my balance, as if my proprioception is not quite working right. I have not fallen, but that is really my dance chops. All those years jitterbug dancing, I recover my balance very well. However, I am staying off of ladders for now.

The antibodies are annoying. The dopamine ones are down a little, which is a relief. I still spent 20 minutes this am organizing CDs into categories. This satisfies both the ADHD and the OCD bugs. I have four categories: women musicians, rock and blues, classical/ethnic and local/folk. Sometimes I don’t know where the hell to put a CD. Southern Culture on the Skids… hmm. Harry Connick jr…. double hmmm. I now have a pile of movie soundtracks and a pile of DUNNO. I have picked up CDs at garage sales when they are a dollar each. Random. Those are in a separate “listen to it and decide” pile. They could end up in the library box outside if I dislike them enough. There seems to be some rap, I don’t have tons of that. Punk, now, it gets filed with the rock except when it’s more Americana…..

I can lower the antibody levels with a hot bath. Tend to wait until I really have to eat, eat, then with the antibodies start poking me I have the hot bath. A sauna would help as would a hot tub. Dang. Where is my hot tub? I hurt a lot more if I eat gluten or get my blood sugar high. Sugar is bad. Rice is pretty ok, though muscles hurt afterwards. I’ve long since trashed my glycogen stores, so my blood sugar will drop back to ketosis within 2 hours instead of taking 2-3 days. Feels terrible while it is happening. I get really cold and achy and just feel like I am dying. Lie down, wrap up in a really warm pile of blankets. I feel the shift: lights get brighter, sound gets louder and the pain switches off. Then I get too hot and throw off the blankets and have some energy again. I still have to behave: any little thing like starting to trot up the stairs and OW, my chest starts hurting and I get short of breath. I am a little short of breath just being vertical. I am glad I am not bad enough to have to just lie in bed, that would fungking suck.

Hope you are well. Get the covid vaccine: it may well make you feel rotten, but covid 19 does the same thing only more so. I think that if I got covid 19 I would croak.

Ribbit.

Peace be with you.

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Pandas and the toughest yarn

After my sister died, I eventually got a box from her home.

People were cleaning it out. My cousin Ko, my friend Caroline, other friends.

Among other things, they sent part of her yarn stash.

What they sent me was the very very fine yarn and the fuzzy yarn. The mohair.

Oh gosh, I thought, they sent me the toughest yarn.

Well, as part of the dealing with the ADHD/OCD antibody annoyance, which makes me wired while the OTHER antibodies make me physically not able to do much, what am I doing?

Sorting my yarn stash, for one. I have a LOT of that lovely fuzzy soft superfine mohair and other superfine yarns. It is tricky to work with because the fine needles are hard on the hands and because if you screw up, it’s hard to take it out. I know some of the tricks: freezing the sweater is one. It makes it easier for the fibers to untangle.

I’ve also been sorting the knitting books and magazines. I have more books. My mother gave me a whole hardcover book on edges and casting on. I’ve used it twice so far. But now I am home, buzzing with antibodies (yeah, sometimes it feels like ants or bees or pins. On the inside.) and so: knit.

And lo, I find this book. Fine knitting. It even has a mohair t-shirt pattern! Awesome, I am going to be knitting up some of my sister’s mohair. Wonderful. I think she’d approve. Also, I plan to be just as glam and sultry as the woman on the cover, heh.

I think I’ll submit this to the Ragtag Daily Prompt: Country Comfort.

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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.