PANDAS and PANS: Have You Heard of These? This May Be Part of My Puzzle and Not Borderline

I watch a lot of YouTube. Too much really.  And I get a lot of different types of suggested videos on my home page there.  Last night after watching one video, I noticed a thumbnail from ABC 20/20. The title was “Parents fear for young daughter’s safety as her behavior changes dramatically…Part 1.”

I clicked, out of sheer curiosity. I had no idea what it would be about. In that particular video they didn’t even get to what the diagnosis was so I went seeking out part 2. But I’d also read comments under the first video and some people were naming PANDAS as the probable diagnosis.

I had to know more and watched part 2 and 3 hoping to see the whole episode. I finally found a link in the comment section of part 3 to the entire show, which I will link below.

PANDAS stands for Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. The video explains it much better than I do, the way it all works in the body, but essentially when you have an infection/virus like strep throat, the virus can make its way across the blood brain barrier and effect your brain…which means it will effect your behavior.

Some of the illnesses named in the references I’ve found so far are strep throat, rheumatic fever and scarlet fever.  I only noticed someone mention scarlet fever in passing, I think it was in the comment section of the article I read. You can find the article here if you’re interested.


The following paragraph from the article is rather interesting:
“The population is split between patients who had never been to a psychiatrist before, and those who had been to one, or many, with less than salutary results.  The presenting complaints varied broadly; anxiety, panic, depression, ADHD, sleep difficulties, OCD, tics, Bipolar Disorder, ODD, headaches, fibromyalgia, medication side effects. And many more.”


As I watched the video and read the article, I wondered seriously how many people have been misdiagnosed with borderline personality disorder and other so-called mental disorders but actually have PANDAS.

This requires testing to be absolutely sure and it’s not too probable that I have such testing available to me. In addition to that, it’s not recognized by many doctors. What a fuckin’ surprise righ? Some deny it exists and say that there’s not enough evidence. So even though testing exists to find out, these fucking assholes won’t even order the test let alone acknowledge your concern about it if you mention it to them.

I think about all the psychiatrists I went to see when I was younger, at a time when these doctors still held office hours and talked to their patients. Not one of them ever ordered tests to see if anything was PHYSICALLY wrong. NOT ONE even suggested it.

And later, when I spent time with therapists, nothing like that was suggested either. Now psychiatrists meet with a patient for 15 minutes tops at a time to throw a Rx at people.  It never occurred to me either because well, I was indoctrinated, gas lit and brain washed to believe it was my mind.

I mean for fucks sake, is our brain not a physical part of our body anyway??? Seriously!

But I digress.

Some things that stood out to me in my discovery of this disorder was that my father when he was 9 years old came down with rheumatic fever. It would not have even been 1950 yet, so of course, PANDAS was not even named yet. But that doesn’t mean the symptoms and reactions in the body didn’t exist. The infection would’ve changed his DNA despite being treated.

My father as an adult displayed some of the symptoms of PANDAS. Of course I would not know when they started. It would be interesting to know if anything about his personality changed after he recovered. He was bed-ridden for an entire school year. Had to have a tutor come in to the house and the doctor made house calls.  As an adult though, my father had mood swings, which was the most prominent I would say of his symptoms, traits or whatever you wanna call them. He also displayed rage to a point.I almost hesitate to say that only because I’ve experienced someone raging at me and I’ve raged at others.

My father never did it like that. His anger would be sudden and his voice would boom.  He had a very deep voice and if something set him off suddenly, the unexpected reaction of the angry tone of voice had the same intimidating effect of raging. The end of his rage would be abrupt and he’d turn and walk away.  Then later, you’d never even know he’d been angry.

There was a point in time, during my adolescence though that he seemed to be perpetually angry with me. Just gave me the cold shoulder much of the time or spoke abruptly to me.

And finally he also displayed behaviors that I would be considered OCD and last but not least, severe and I mean severe anxiety and control issues.

As for me and my illnesses: When I was a kid, I had scarlet fever TWICE! Once when I was 5 and then again at the age of 9 at the same time that I had chicken pox.

I’ve already mentioned that I have ragey episodes. I am moody for sure and definitely have some OCD behaviors and habits. AND intense anxiety and control issues.

I know that these things add up to other problems, disorders and “mental” illnesses but they ALSO add up to PANDAS. I know I’m an adult. You could just change it to AANDAS. The symptoms still can play out in an adult.

Adults get strep throat and strep infections, particularly if they work in hospitals and doctor offices. And if they’ve had the aforementioned viruses and infections in the past as children, and it went unnoticed or untreated, then it would still be present in an adult body/brain.

Even treating these infections, PANDAS can still take hold as you will see in the video if you watch it.

I want to make it clear though that even though I think this could be a piece of my puzzle, I still understand that it’s not the answer for everyone. It doesn’t mean I’m discounting the effects of traumatic experiences in any way. I have enough of my own. In fact, intense stressful experiences can trigger PANDAS from what I understand so far. And that’s why I say, “a PIECE of my puzzle.”

In addition I also understand that it might NOT be what’s wrong too. I’m just considering it and I was pretty blown away by the correlations that I see.

More of why I think it might be part of what’s going on with me:
I notice a difference in the way I feel (mood swings), my behavior (rage) and even my thought process and perceptions, when I am eating a certain way. The healthier I eat, the better I feel.The more stable I am in my mood. The more awake I feel when I first get up in the morning.  The less OCD behavior I display.

These behaviors can manifest as a result of inflammation and I notice inflammation in my body in more physical ways more so now than ever. Inflammation plays a part in auto-immune disorders and in fact pretty much any illness.

When I was a young adult, I ate so much take-out, including fast food. That food by sheer design is inflammatory to the healthiest of humans. But when someone who has a sensitive constitution and/or an accumulation of it in their body over a period of time, the reactions will become more and more intense.  A person’s brain can swell and they may not necessarily feel it. And certainly no on on the outside can see it…except in the behaviors that are displayed. And then it’s punished and judged.

Apparently diet is used with some kids who have PANDAS along with probiotics and behavioral therapy. So I can see the correlation with diet. The behavioral therapy? Well I was on the right track there but it’s really useless when the brain is causing the mind to be in a dark place. Not to mention the horrid environment and shitty therapists I got stuck with when I went for it.

It’s frustrating. It seems that I find myself on the right track at times but in the wrong order.

I also tend to self-sabotage because food isn’t a fast fix. It takes time and after about two weeks, I give in to cravings and I get back into a downward spiral and before I know it I’m feeling very out of control again.

Anyway, here’s the video just below. It could be difficult to watch because… well, children are struggling. But the info could also be helpful if you’ve been struggling in some way with your diagnosis and doctors not listening to you.

https://abc.go.com/shows/nightline/episode-guide/2018-07/20-072018-Mystery-Diagnosis-Children-Under-Attack

 

Another link: PANDASnetwork.org

Mothers’ Day Delayed Triggers

It seems like when one of those trigger days comes up, other stressful shit snowballs and everything feels hopeless.

Of course I’m talking about mothers’ day as the trigger day. And even though I felt like I sailed through it all right on the actual day, it’s apparently caught up to me.

Last night I ran some errands. When I was sitting in my car in the Trader Joe’s parking lot I saw a guy walking between cars in the lot and he glanced at me. No doubt it was because I had just started my car, he needed to walk behind my car to get to his and he wanted to make sure I saw him too so I wouldn’t rear end him.

Completely understandable. He was watching out for himself.

But my mind goes to my mother and either a memory of something I’ve done before or something I can imagine me having done when I was just a little younger, likely after divorcing my father. If I’d have caught an age appropriate man glancing at my mother in the same way, it would not be above me to say, “There ya go mom, he’s checkin’ ya out.”  It would’ve been mostly a joke since once divorced, she had no interest in dating AT ALL.

Then I switched roles (in my mind) but in my case, my daughter was imaginary because I don’t have one. I pictured me in my mother’s role and a teen daughter saying that to me while we sat in the car together getting ready to pull out of our spot and go home with our groceries.  I even pictured what that might feel like to have such a presence in the car with me.

I started thinking about how I knew by the age of 13 that I didn’t want kids. Then I thought about how I’d felt slight regret in the past and thought how it might be nice to be THAT house where my teen kids friends all came to hang out.

Last night as I thought about it though, felt lonelier. I felt even more regret. I don’t regret not having children in the state I was in at the age I would’ve been having kids.  But I regret not ever feeling like I could be a capable parent.  I never felt grown up enough. I still don’t.

The thought of the type of man I would want to help me with the most difficult job in the world crossed my mind. I started to picture the kind of man it would take to help me raise one or two children. I’ve never been with such a man.

At that point, I realized that ever since the break up of a tumultuous, emotional roller coaster of a relationship in 2011/2012, I never stopped to think about what sort of man I would like to have in my life.

I’m not sure I ever really did. The men who I felt capable of raising children were not for me…not in my mind. They were too good for me. And I settled for men who, some good looking, but all of them were emotionally unavailable in some way as well as emotionally immature. At least I had the instinct to know better than to have kids with them.

But then it didn’t really have a whole lot to do with them. I was afraid to be pregnant and then I was afraid of how would the child be financially cared for. But most of all, I did think about how I would treat any child of mine. I had bad examples and somehow I knew that having kids was a bad idea for me. At the time I made the decision at 13, I just thought it was purely selfish. I thought I just didn’t want the burden and responsibility so that I could be free. But the truth is I didn’t want the responsibility because I didn’t think I could handle it and didn’t believe that I’d ever find a man would could either.

My thoughts then lingered to B as I drove to the next stop to drop some stuff off at Goodwill. At a stop light, I glanced over at a car sitting next to me. Inside I saw two people and felt sad. I wondered what their life is like. If they get along. If they have family. If they have support in their lives from both family and friends. If they were happy to be in the car together.

Because at that point, I was longing for company. But not just any company. I wanted someone I felt close to. Someone I felt safe with. Someone that I felt had my back and enjoyed being with. It was a more relaxed feeling to not have B with me. I can’t stand being with him in a vehicle. He doesn’t talk, and when I talk he doesn’t acknowledge most of what I say. He doesn’t see the same things I do and so there is this big ass gaping ravine between the two of us even when we are sitting next to each other.

So that led to frustration, sadness and more loneliness.

And this morning I realized that the AC wasn’t really working. Which means that in order to get attention to that, I need to call or text the wicked bitch of southeastern PA.  She’s got a history of invalidating complaints, blaming us and putting the onus on us to take care of certain things. Not big things like this. But that she’s done that at all, just added to the depression that already set in.

It’s bad enough to have the AC go ka-fucking-put on the first day it’s been hot in 2 weeks but quite another to know you have to deal with a difficult person (probably a narcissist) to deal with it.

Personal Girl/Woman Stuff: A Bit About Neglect

There is something to be said for staying in a fog of depression, agitation with the present and irritability with the people around you that didn’t cause the trauma.

There are aspects of it that make things easier. You don’t have to feel the pain of the events that come to mind during moments out of the fog.

You don’t have to ruminate on it and think it to death trying to feel better about it. Trying to make sense of it. Trying to think and talk it away to yourself.

It just feels better to keep those memories at bay because it hurts too intensely to realize the depth of neglect in important aspects of your life as you grew into the self you would never actually know.

No wonder so many of us turn to drugs, alcohol and people who use us. Anything to dull it. Anything to just escape the fact that we weren’t loved.


The above thoughts come from remembering that I was expected to stay at the house when I was 13 (in 8th grade) while my parents were still at work, while my siblings could go do whatever the fuck they wanted outside the house. I mean, I could be around the house, but not two blocks away where my (supposed) best friend lived at the time.

Thing is, I didn’t usually ‘stick around.’ And if I did it was because my friend was there with me.

I got paid 5 bucks as allowance for this each week. It was plenty to keep me in cigarettes (yep, I smoke at the age of 13) but that was about it.

What could a 13 use money for? Well, clothes for one thing. I had clothes. My mother met my needs for the necessities for the most part. But I liked to go to the mall and there were times that I saw things I would’ve like to buy. I wasn’t spend crazy though. I’m just talking about an album here and a pair of jeans there. Not a lot of shit that I didn’t need.  It would’ve been nice to have a bigger collection of music (albums). But I was pretty much convince that asking for more than what I was already getting would just be responded to with a no. So I didn’t usually ask.

The thing though that really hurts though is that as I was coming of age so to speak. My chest grew pretty rapidly, like over night. I’d had a trainer bra in my drawer for a couple years that I hadn’t touched but it finally came to the point that I could not deny that my body had changed, as much as I had not wanted it to at that time.  I was very subconscious about it and I remember one summer I would walk around the pool (at the swim club we belonged to), with one arm folded over its opposite shoulder to try to hide myself, until I got into the pool.

That trainer bra though, I wore that thing out and I’d grown out of it long before I wore it out.

So where was my mother at this point? This woman did my laundry. She’d have seen the bra wearing out, getting holes in it. And then she would’ve noticed my body and that I had grown too big for a fucking trainer bra! I was a kid and not comfortable with such a big change. I still wanted to be a tom boy and that had been made difficult. I didn’t want to grow up quite yet. I wasn’t ready. I was embarrassed by my body’s changes. And I wasn’t comfortable bringing it up to my mother.  She was the adult. She owed me the reality check.

Eventually of course I finally admitted to myself that I had to do something other than wear a trainer bra. But I keep thinking about how mothers are supposed to gently nudge a young daughter into that reality. She could’ve said something like this: “I think it’s time we get you out of that trainer bra. Why don’t we go shopping for some bras that fit.”

I’ll admit that my memory isn’t perfect and she may have done that.  But I do remember that I was wearing that one trainer for way too long.

Darkness Lifting a Bit

I’m waiting on a couple burgers to cook. Part of the problem is certainly my negligence in taking care of my ‘diet’. Not diet in the sense of restrictions and something to ‘go on’ to reach a particular goal. “Diet” as in what I eat. Like you’d talk about an animal’s diet…what they eat. Period.

There’s a lot to be said for keeping blood sugar in balance, whether my issue is high or low…I don’t know. But I do know keeping it in check makes a difference in my mood and state of mind.

Another thing that helps that I’ve written some about before is kratom. Just like most other supplements though I am sensitive to it and need to be careful. Too much and it does the opposite of what I need it to do and taking it too frequently, I have wheezing issues. It can also feed the rage too. So yeah, it’s a bit of a tight rope. I will go weeks at a time sometimes without taking any.

Today, a short time ago I took some, mixed in with some fresh squeezed grapefruit juice.15 minutes later, I feel less depressed. I feel a bit more organized in my thinking and the darkness has lifted a lot. It also gave me the push within to want to do some things for myself.

Last night I went to a library and wrote out a list in my journal of things I want to have with me in a backpack when I leave the apartment.  Before going to the library, I stopped at Whole Foods to get something to eat. The longer the errands took me the better (ie., speaker asshole) and I was hungry.

When I got back out to my car, I realized I could’ve used something I didn’t think I had with me. (Turns out I did but didn’t know it and so didn’t use it.)

When I got to the library I realized there was something else I could’ve used while I was there and didn’t have.
So I said to myself, “You want to put together a grab-and-go type of bag so that when you want to leave the shit-hole you live in, you don’t have to worry about thinking through what’s needed.”

So I made a list of the stuff I could think of that I would want in a bug-out  bag needed for a local escape. Well, I took care of gathering those things just a little while ago and put them into a small nylon backpack that I have. I did it because I felt motivated as a result of taking the kratom.

I can think of other things I’d like to add but there isn’t room for much, so at some point I will want a bigger back pack, especially so I don’t have to carry multiple bags with me.

My non-traumatized brain likes to keep things simple, efficient and organized.  And I can say, that when kratom is absorbed in the way I need it, I feel almost ‘normal.’  I am able to organize better, I don’t feel like a lead weight while I’m doing chores and I actually feel like being alive.

But again, and I think this is important, there is a sweet spot for me and kratom and I don’t always hit it.   Even the same kind and same dose can have a different effect on a different day.

There’s some other things I want to do too in the next hour or so, and that seems and feels more possible than it did only a couple hours ago.