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

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

  1. I know a whole whole lot about it. Sorry I have not emailed you back. I’ve been in a funk. But I actually read the email every morning for inspiration.
    Anyway… I have tourette syndrome and anxiety. My daughter also has this plus OCD. She was diagnosed at a specialty clinic . A PANDAS clinic. She did not have the strep titer and was tested for it nor did she or I have chronic strep. So that was ruled out but the symptoms are similar and a friend of mine’s daughter has PANDAS and she is a lot like us. It should not be ruled out and you should be thoroughly evaluated for it. If you want to email me again about more details I will email you back. Sorry I’ve been in this funk an dhavent gotten back to you

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    • You know it’s funny, when I was listening to the info about it, I thought of you and then thought, “She likely checked into this too, since she’s been so thorough.”

      I would not be able to afford any testing for it so it doesn’t really matter all that much on looking into it for me.

      I have been concentrating on diet, which isn’t always successful. But I just last night, have figured something rather significant out for myself as far as what I’ve been eating and a certain symptom that shows up after eating certain foods. I will email you when I get a chance and catch you up.

      No worries on not emailing me back though from before. It’s okay. I was just really glad to help and I love that you can go back to it for inspiration. I know how hard it is to not have people in my life who share my history. It’s hard enough for able bodied people. It gives me anxiety to think I’d need them to help me physically. And it sucks that you don’t have that.

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      • Yep I sure did. And I even did the meditation CD’s but through a therapist who I first did them in her office and then at home.
        I was interested in diet too and got a glucose monitor and just for the heck of it ate chocolate sugary chocolate yesterday and i immedatiatly felt dizzy after and took my blood sugar. Totally normal level. So I’m guessing just sugar makes ya feel like crap.

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        • I swear I think people with PTSD (and even though I found PANDAS to be interesting, and many of us could have it on top of the PTSD I still know that PTsd is a thing) anyway. I seriously think people with PTSD, particularly the complex kind, have more food sensitivities than the average bear. Too much sugar makes me feel like crap but it can bring my blood sugar back in balance if it’s really low…proven by eating an ice cream sandwich on Wednesday while away from the “homestead” and had not many choices but HAD to eat something. I felt better but by the time I got home (only 15 minutes later) I was super hungry again and couldn’t get food ready fast enough. Shaky and hangry.

          When I eat chocolate, it’s usually raw cacao and the theobromine in it can make me wired if I eat too much. it picks up my mood though if I’m careful with it…but that’s hard because of a binging issue. It’s the same for caffeine but when I’ve been drinking coffee non-stop for days and weeks, I get mean and intolerant.

          I didn’t know there were CDs for PANDAS. Did they help?

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          • I would love to have a study done and find if those with PTSD have more chemical or food sensitivities. And I wonder why. If it is the overactive neurologic system.
            There is a specialized therapy for it. Intensive therapy.
            I just did the CD’s for meditation. Sorry I mixed two comments from separate posts into one and it sounded all confusing

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  2. This is a new one to me. But it makes total sense. I had tonsillitis, strep throat, and bronchitis many times as a kid. Had my tonsils out when I was six. Oh man that ether they used for anesthesia back then was scary! I still battle inflammation issues now, in my mid sixties. I take the antioxidant grape seed extract which helps a lot, but it still isn’t enough sometimes.

    Of course, our brain is connected to our body and what affects one affects the other. Like having fish in a pond, whatever you put into the water is going to affect the fish.I

    That’s so interesting about your dad. I know my mother had a bad head injury when she was six or seven. She fell on her head on cement. When I was a little girl and she told me about it, she said that she had never felt the same since falling on her head.

    I never fell on cement, but I have been knocked unconscious four times, three of which were due to abuse. Plus I had a TIA, what they call a mini stroke, when I was 33. I was in the hospital for a couple of days, and a lot of tests were run. In the end I was told it was probably a freak blood clot and that no brain damage was found. But I lost my math skills with the TIA. Until then, math was like a higher language to me. Loved it. Now I struggle to remember the times tables.

    When I had my baseline eeg last year before having neurofeedback, the results were that I had evidence of almost everything but dementia. Head trauma, stroke, ocd, add/adhd, dyslexia, and PTSD, all kinds of things. The therapist said: “When I met you for the intake interview I couldn’t understand why you were here, because you seemed so well put together, calm and personable. Then I saw your eeg and understood!”

    Thank God I started out with an IQ of 156, according to a proctored Mensa test I had decades ago, or I wouldn’t have any brain left! Actually, three of my four knock out concussions happened before my IQ test at age 26, so who knows what I started out with. But the worst concussion, the mini stroke, and two years of heavy drinking came after my Mensa test.

    Uh… Why am I telling you all this? I totally lost my train of thought. Need to get off here and go write on my memoir. Oh yeah, I know what I wanted to tell you — I recently made the stupid mistake of calling my momster for the first time in years. She lured me in with a wonderful loving birthday message. I thought maybe old age had changed her for the better. But at 83 she is worse than ever. At first, she was all sweet and nice, catching me up on news. Then BOOM, gaslighting, projecting, evil LIES were coming out of her mouth. So I had to change my cell number.

    But here’s the thing, when I tried to notify my aunt, momster’s sister, of my new number, my cousin informed me that my 78 yr old aunt has dementia. I thought something was wrong last time we talked, in January. Now I wonder — could my mother have early dementia too? On top of her childhood skull fracture? Whew. Maybe she did not know she was lying? Maybe?

    I think we all need to wear protective helmets, from birth to the end of our lives. Not really, but wow, head trauma ruins so many lives. And when you throw these PANDAS into the mix, and kur crazy diets, and all the toxins in our environment, it’s a wonder we can function at all!

    My tablet battery is dying, no time to proofread..

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    • PS: Someone on Twitter accused me of bragging by letting it be known that I am a Mensa member. I surely don’t want to be all narcissistic like that! But I figure that if I can tell the bad about me, that I spent two of my teen years incarcerated in a state mental institution, and I have C-PTSD, and I have been divorced more than once, etc, then why can’t I also tell some of the good? But even so, I would not want to take an IQ test now, I would probably fail it, lol.

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  3. Hi, I’m an adult diagnosed with PANDAS/PANS. I had my first symptoms of mental illness at 9, but it wasn’t until ten years later that I was diagnosed with PANS. I’ve been treating it for the last four years now. Even though this is called pediatric, there are a lot of adults with PANS out there because no one bothered to look into it when we were kids, and people don’t just outgrow autoimmune disease. I’d encourage you to investigate this. You’re right in that it probably won’t solve all of your problems, but treating it could forever change your life for the better––like it did for me. I think I’d be permanently institutionalized (or worse) without the IVIG, antibiotics, and steroids I got, but instead, I’m now pursuing a graduate degree! When the brain is inflamed from PANS/PANDAS, traditional psychiatric interventions can only go so far. Message me or check out my blog if you want to know any more! PANDAS Physician’s Network has some good resources on their website.

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    • P. S. BPD is a common misdiagnosis in people with PANS. BPD’s hallmark symptoms like emotional dysregulation, fear of abandonment/separation, and suicide attempts are also characteristic PANS symptoms, so there’s overlap… And certainly trauma can contribute to physical illness, just like it can for mental illness. I don’t think the mind and body can be so easily separated like some doctors believe.

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    • Hi. Nice to meet you and thanks for the comment. I’m happy for you that you got the proper diagnosis and things are so much better for you since.
      I have government insurance so it really isn’t likely that I’ll get any real help through the doctors that are covered under that insurance. I will ask though and I could do some research, but I have no income. And that usually leads to dead ends in my experience, especially when it comes to medical conditions that are on the obscure side.

      I’ve had some pretty serious digestive issues too so taking anti-biotics would not be the best idea for me right now. I don’t talk about this on my blog…at least not much as of yet. But I’ve started eating meat…a lot of it. I know that sounds crazy but following a meat based diet as opposed to a plant based diet, turns out it’s anti-inflammatory.

      And so I’m starting to feel better. I see some kind of difference and improvement each day. It is slow, but that’s okay. I’m just sorry I didn’t realize this before.

      All this being said, I might like to look further into getting diagnosed and possibly also find out more about IVIG if I do have it. Do you know what tests I would ask for?

      I am not at all surprised that BPD is a common misdiagnosis for those who actually have PANDAS/PANS.
      Thanks for the resource too, I’ll check it out. I’ll also have a look at your blog.

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