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My working theory regarding PANDAS and PANS is that everyone makes a different trio of antibodies*.

Take the tubulin antibody. I am lucky. My antibody is a key that fits in the fast twitch fatigable tubulin so that my fast twitch muscles don't work right when the antibody is high. This affects my lungs and makes me short of breath. Oxygen fixes it, hooray. However, I think some people have antibodies that affect both the fast twitch fatigable and the slow twitch muscles. They are the chronic fatigue folks who can barely get out of bed. My chronic fatigue was relatively mild. Is ALL chronic fatigue related to this? Working theory, remember? I could be wrong... but if I am right...It would be nice if we could treat chronic fatigue with oxygen or a sleep apnea machine and fix it. I need a lab and a bunch of bench scientists, need to isolate antibodies, I need a plasmapheresis machine and then clinical trials.

My dopamine antibodies apparently fit in ALL of the dopamine receptors and TURN THEM ON. This makes me look completely batshit out of my mind when the antibodies are high. I am not out of my mind... not quite. It comes close. It also heightens the oppositional defiance that I learned by nine months or younger, to survive really really bad stuff in my family. Evidence is turning up about sexual abuse... well, you don't want to know. Ick. I apparently was a biter. So I don't really remember but still wake with my jaw clenched tight.

In 2012 when I was a breeding ground for strep A, the strep eats up vitamins. I FELT a cut open on my hand and watched it start bleeding. I got the shakes, because that can be the start of DIC, disseminated intravascular coagulopathy, where you just bleed out. Fungk. I drank kale water. Parsley, kale, collards have the highest vegetable source of vitamin K. The bleeding stopped.

The next day I was sitting upstairs in my house and the cut opened again and blood started running out. And I tasted blood. I went to look in the mirror. I was bleeding all along my gum line. SHIT, I AM GOING TO DIE! I drank kale water and called an ambulance. The ER had me labeled batshit. The ER doc said, "If the labs are normal, I won't believe you." Nice, thanks fucker. So the labs WEREN'T normal. "Well, they are just a little high. So I don't believe you." Great. I trailed home, wondering if I had to show up bleeding out before they would help me. My life is fucking weird.

But my personal dopamine antibody makes me ADHD, OCD, oppositional defiant, emotionally labile, hypomanic (I sleep, so not full maniac), and so forth. The stand out is the oppositional defiance. The antibody plus my high ACE score means that I do turn into an ogre or a werewolf when I am .... really scared. I fire up, extend fur and claws and fangs and am absolutely ready to fight. When cornered or scared, I recommend not messing with me, because well, I did understand wolverine pretty well. I was instantly envious of his claws.

My post college boyfriend said that I turned into an ogre when I was angry. He was a jerk in that he wanted me "to never get angry again".... um, right. I had been in counseling for a year to try to present my anger in a more appropriate way and the counselor finally said, "Ok, you've tried everything. Now he needs to come in." He said, "I want you fixed so that you never get angry again ever." I laughed. "In your dreams." He immediately broke up with me, rather to my surprise. Oh, I thought, HE has a problem with anger. I may well turn into an ogre, but he's totally unrealistic. I told him that.

I contacted him ten years ago and initially got a two word reply: "I'm sorry." Ok, three words, sort of. I thought, ah, figured out that anger is something ya gotta deal with.

Anyhow, I have worked on the ogre thing ever since, because I took it seriously.

Might make some progress some day... heh. Watch out for your local werewolves.

The third antibody is anti-lyso-gangliosidase. It seems to cause me fibromyalgia. I know how it works in me and I can mostly control it. I hurt when my blood sugar rises and especially with gluten. Fructose and sucrose are not good either but lactose is just fine. Weird. Honey is less bad than sugar and dried fruit is ok, but when the antibodies are high, I can't eat fresh fruit without hurting.

At first when I get sick I just eat protein, fat and greens, needing the vitamins since the cells seem to speed up and eat more. On the worst day I didn't eat anything except coffee and butter. Coffee seems to displace my personal dopamine antibody and calms me down. Tea doesn't. Albuterol doesn't. Terbutaline kept me from preterm labor. All of these are relatives to adrenaline.

So, vampires, ogres and werewolves. What about the other legendary creatures? Angels, devils, mermaids, zombies. Honestly, I think the zombies eat the heavy carbs. Also if anti tubulin can turn muscles off, in theory there could be anti tubulin that turns them on. Then you get super athletes and oh, there goes Superman...and Wonder Woman. What a very weird world we do live in.

And that is my current theoretical update and thoughts on PANS and PANDAS and here is the site to read about the antibodies: https://www.nimh.nih.gov/news/science-news/2017/guidelines-published-for-treating-pans-pandas.

* Ok, that link does not actually talk about the antibodies. * Here is the key quotation: "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)." which is from this paper: https://www.liebertpub.com/doi/full/10.1089/cap.2016.0148, the 2nd of three papers about how to treat PANDAS/PANS. The paper leading to the three papers is this: https://home.liebertpub.com/news/revised-treatment-guidelines-released-for-pediatric-acute-onset-neuropsychiatric-syndrome-pans-pandas/2223. Remember, the US medical community, in their infinite wisdom, does not believe in this in adults currently but European and Canadian physicians do.