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Psychosis or PANDAS/PANS/OCD


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When i was 11 I got rapid onset OCD, the symptoms more closely relating PANDAS/PANS. It got really bad and I was committed into a hospital. At 15, I started taking antibiotics, Sertraline, and Olanzapine, and as expected, the OCD decreased. The problem is I was never properly diagnosed, and when i turned 18 I stopped taking medication (with doctors approval). After a while, psychotic symptoms returned, and after seeing various neuropsychologists, I was diagnosed with Psychosis. I know PANDAS and OCD in general can cause Psychotic symptoms, but after a couple sessions with my doctor, I realized I've had the psychotic symptoms long before I had OCD, and my magical thinking was more of a response to the psychotic feeling I had. For the first time I'm doubtful about me having had PANDAS (even though symptoms seemed more akin to it than normal OCD). I'm not sure if it was the antibiotics that helped or the olanzapine/sertraline. The problem is I don't know what to do, treat my psychosis, or PANDAS. I no longer have compulsions, but still... And on top of that, the sertraline caused some side effects that still affect me to this day (i am 20). 

 

It's strange because I'm pretty sure I did have PANS or PANDAS, but looking back, I started doing the OCD rituals because of what the psychosis made me feel, to cope with it. I don't know wether psychosis caused OCD or vice versa, so I'm hoping someone can help me out.

 

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I had everything you are describing.  I had severe sudden onset OCD after contact with strep at around 14, and rheumatic fever at 17.  It all eventually hit the fan at 28 with psychosis and just generalized insanity for lack of a better word.   I am not a doctor, but your doctor should probably treat you with both antibiotics and psych meds.

Edited by PIK
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5 hours ago, Gpookie said:

May I ask what "magical thinking" is?

Most people with OCD start with their obsessions because of magical thinking. Some might believe that if they don't wash their hands someone will die. That's the gist of it. Other people with OCD have a just right reason for doing things. They just feel wrong and might start to feel anxiety. For me it was a mixture of both. There was some magical thinking but I couldn't quite pinpoint what it was, and I did a lot of the "rituals' because it just didn't feel right. Now that i know I have psychosis, I realize that my logic for starting the "rituals" was because the world didn't feel real. Everything around felt set up. And while the OCD has sort of resolved (another reason I believe I had PANS/PANDAS and not normal OCD) the feeling that everything around me is not real remains and has increased a lot.

 

Edited by Emi1432
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E

22 hours ago, Emi1432 said:

Most people with OCD start with their obsessions because of magical thinking. Some might believe that if they don't wash their hands someone will die. That's the gist of it. Other people with OCD have a just right reason for doing things. They just feel wrong and might start to feel anxiety. For me it was a mixture of both. There was some magical thinking but I couldn't quite pinpoint what it was, and I did a lot of the "rituals' because it just didn't feel right. Now that i know I have psychosis, I realize that my logic for starting the "rituals" was because the world didn't feel real. Everything around felt set up. And while the OCD has sort of resolved (another reason I believe I had PANS/PANDAS and not normal OCD) the feeling that everything around me is not real remains and has increased a lot.

 

Emi, this sounds a lot like depersonalization; a subjective sense of feeling unreal or anomaly in self awareness. You say 'feel' and 'felt set up' but from what you've wrote you clearly show an objective grasp on reality, this in itself isn't indicative of delusional thinking. There's a big difference between being detached from reality and having a break from it. Depersonlisation (along with derealization) is classified as a dissociative disorder and often goes hand in hand with anxiety disorders (OCD) and possibly as a feature of a chronic course of PANDAS/PANS.

Obviously, I don't know the full picture and am not trying to argue or subsitute for your Drs opinion, but from what you have wrote you clearly describe the essence of depersonalisation. 

 

I've heard PANS/PANDAS can cause symptoms of psychosis (including hallucinations), and your case looks very strong for PANS/PANDAS - it's still very reversible at 20. You should definitely try to pursue treatment for a likely cause.

I hope you get better soon, I'm 4 years older, in a kind of similar position, so if I can try to get better I know you definitely can. :) 

 

 

Edited by Hitman3161
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5 hours ago, Hitman3161 said:

E

Emi, this sounds a lot like depersonalization; a subjective sense of feeling unreal or anomaly in self awareness. You say 'feel' and 'felt set up' but from what you've wrote you clearly show an objective grasp on reality, this in itself isn't indicative of delusional thinking. There's a big difference between being detached from reality and having a break from it. Depersonlisation (along with derealization) is classified as a dissociative disorder and often goes hand in hand with anxiety disorders (OCD) and possibly as a feature of a chronic course of PANDAS/PANS.

Obviously, I don't know the full picture and am not trying to argue or subsitute for your Drs opinion, but from what you have wrote you clearly describe the essence of depersonalisation. 

 

I've heard PANS/PANDAS can cause symptoms of psychosis (including hallucinations), and your case looks very strong for PANS/PANDAS - it's still very reversible at 20. You should definitely try to pursue treatment for a likely cause.

I hope you get better soon, I'm 4 years older, in a kind of similar position, so if I can try to get better I know you definitely can. :) 

 

 

Thanks for responding, 

Well, yeah a big part of it is depersonalization, but that feeling went hand in hand with the delusion that nothing was really real. I do have a grasp on reality, but I also have strong skepticism and doubts about it. I know these types of disorders work on a spectrum so people with psychosis don't necessarily hallucinate or have strong delusions. 

The problem is that while I know PANDAS and anxiety disorders can cause psychotic symptoms, I also now  know it can happen the other way around. While I used to be sure i had PANS, I started having doubts because the psychosis symptoms came before the PANS symptoms. I also don't really have OCD anymore save for a very small details that most of the time don't even bother me (only about once a month or couple of months). The reason I wrote in the forums is because I don't have basically any OCD symptoms anymore, only the psychotic ones remain. But I don't know what the root cause is, either delusions or OCD. On one hand, symptoms were more like PANDAS/PANS and the OCD got to extreme levels, but on the other, I'm sure my train of thought was similar to "the world isn't as it should be, my parents are not the ones I know" and that led me to start with rituals. I knwo things won't get better unless I find the correct treatment, and even if I know which one is the problem, I don't really know what treatment there is (when I took the medicine the OCD decreased a lot, but even then once in a while I'd have depersonalization and a weak capgras delusion, even when i took the olanzapine given to OCD patients). 

 

Sorry for being repetitive and a bit superfluous, but I wanted to try and be clear.  When the depersonalization started there was a bit more than a feeling, even though the feeling was what really bothered me. Now I don't really have the belief as I used to, but with everything around me feeling not real theres always a strong doubt or skepticism that goes along with it.

Edited by Emi1432
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Em -- I can't claim to really know psychosis, nor do I have all the symptomology and/or definitional stuff at my disposal that you appear to have studied and grasped.  But I can offer this observation.

My DS's primary PANDAS presentation was OCD.  When my DS's PANDAS was at its height, he definitely looked "psychotic" to us, and though he was young and didn't have the academic background regarding psychosis that you appear to have, his descriptions of how he was feeling and what was "bothering him" definitely fit in with your description.  He appeared to be literally driven "crazy" by the OCD to the extent that it didn't even resemble OCD anymore because it was so "out there," so broken with reality, that there was no getting through to him.  Therapeutic techniques that had worked for the previous 6 years didn't work anymore because they couldn't break through his new, self-created reality.  He had an answer, an excuse, a rationalization for everything that was absurd, but it was very real to him.

Abx treatment brought him back to a place where the therapeutic techniques could break through that bizarre fog again, and the "crazy" abated until we were left with a more classic presentation of OCD again.   But even now, particularly under stress, my DS's lingering OCD can take on an "unreal" quality in terms of the way he will rationalize it or become subservient to it -- almost like he needs the unrealistic rationalization of it so that he can continue to engage in the ritual or compulsion without anyone -- his parents, his therapist, his friends -- trying to break through that "reality wall" and compel him to cease the behavior.

I guess what I'm wondering, again, predicated only upon this very close-up and personal experience, is, can this "psychosis" actually be a complex and sophisticated extension of your OCD, your brain attempting to protect you from the naysayers and other manifestations of reality that could break in and challenge your sense of appropriate behavior?  I know my DS and some other folks who contend with OCD that I know can be very analytical -- sometimes excessively (obsessively?) so -- particularly in an attempt to understand and/or explain themselves.

Finally, I would also agree with the others that you have nothing to lose by pursuing PANDAS/PANs treatment and see if it alleviates any of the problems you're currently contending with.  I suspect we're only a decade or so away from the discovery or declaration of the fact that ALL mental illnesses have, at their root, some medical/physical genesis.  So, irrespective of whether, definitionally, what you're suffering from is PANDAS/PANs or psychosis, what do you have to lose?  Chances are there's some inflammation in the mix, at a minimum.  I say go for it!

All the best to you.

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I too agree that pursuing a PANDAS/PANS treatment protocol would be appropriate.  There seems to be a wide range of symptoms to PANS, and my own experience is that it can morph a lot at times.  It is (to me) remarkable that there is as much similarity as there is amongst PANS patients, considering how complex the brain and its reaction could be when bombarded with anti-neuronal antibodies.

I am presuming that you do have PANS, because the antibiotics helped.  According to http://www.medicalnewstoday.com/articles/248159.php, "Psychosis is not a disease in its own right; it is a symptom."  So if it is in your case not a symptom of PANDAS or PANS, then it would be from some other disorder that perhaps is unknown.

My argument for sticking with a PANS treatment is statistical, but it's strong.  Take the disorders that you might be labelled with, and presume that they are distinctly separate and independent of each other.  For example, whatever other disorder could have caused the psychosis, and PANDAS.  They are likely both relatively rare.  To get them independently is like getting hit by lightning twice.  If they are really rare, it could be like getting hit by lightning on two different parts of your body at the same time.  Yes, its possible, but its not the first assumption that should be made.  The appropriate first assumption, is that all the seemingly disconnected symptoms are (most likely) caused by one source thing (one lightning strike) that causes a lot of complications (as an attack on the immune system might do especially when it morphs into an autoimmune disease).  That one complicated thing just manifests in various and different ways, and differently over time.  Only if that "one cause" assumption clearly fails should you move on to the much rarer possibility that you actually have 2 different root cause sources for your symptoms.

It is this kind of argument that was made by Dr. William Benitz for the very first PANS patient at the Stanford PANS clinic.  He said I have a rule of thumb for pediatric patients: They’re only allowed to have one disease at a time.  It’s not 100 percent true, but for a previously healthy 7-year-old to develop what appeared to be psychiatric and hematologic symptoms from two different, independent processes didn’t make sense. There had to be a unifying diagnosis.”  You could actually come up with what the "not 100" percentage is in your case if you know the incidence of the disease that caused the pyschosis.  If a 2nd independent disorder occurs for less than 1 in 100 people (likely, I would guess), then Dr. Benitz's statement would be true more than 99% of the time.  Why even expend your precious energy looking for another cause, first go with the 99%+ sure thing!

If you are interested, you can see Dr. Benitz's quote and the full context of the severe and partly untypical PANS case he references in that quote here: https://med.stanford.edu/pans/news/brain-attack.html .

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