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Yes, intrusive thoughts and those around religious elements (scrupulosity) are a fairly common manifestation of OCD. Treating PANDAS/PANS has quelled/put into remission the underlying medical cause of the OCD by taming the auto-immune response and related inflammation in the blood brain barrier and the basal ganglia itself. Addressing that underlying medical condition goes a long way toward putting an end to the "merry-go-round" of OCD, including intrusive thoughts, so that your rational brain has a louder voice, a better chance for breaking through and taking command.

 

That being said, I've read your post on the PANDAS forum, as well, and it seems that you, like my son, have been dealing with this for quite some time without entirely proper/effective diagnosis and/or treatment. My son was diagnosed with "regular OCD" for 6 years before we found the PANDAS piece and began to treat that medical disorder. As a result, he had developed a variety of coping behaviors and responses to the OCD that have, in some ways, become almost instinctual. So, as compared to a younger kid who's PANDAS diagnosis and treatment comes quickly, he doesn't "snap back" quite as quickly or completely without really working hard to "retrain his brain" away from the old OCD habits. Still today, his natural, habitual response to stress/anxiety is usually some form of OCD behavior, though he's getting better at recognizing that and facing it head on as he grows older and matures emotionally and mentally.

 

Key to my son's work in beating back the OCD both through PANDAS treatment and afterward has been exposure response prevention (ERP) therapy. Do you work with a therapist in this regard? And is your family/loved ones fairly well versed in it, as well? Having the right kind of constructive support around you is invaluable.

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Thank you so much I've had doctors diagnose me with so many different things including paranoid schizofrenia. It was a long road but they now no my paranoia was from my intusive thoughts and thinking I was a terrible person because of them.

My favorite approach is mindfullness. Just because I know now I have no control when they get wakey and doesn't change the person I am at all.

I am having still a very hard time to find a doctor that believs my case (for accepts its real) I've talked to pans proffecionals like dr. Janice Tona who has a son with it and she did most research papers to prove, yes it is real.

How did you son respond after therapy treatment? I am on bactrium for acne and its helping my simptoms of pans alot then if I have no antibiotic. Smh at doctors that don't believe it when other countrys have been treating it for years.

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Yes, I know it can be hard to find a doctor who takes PANDAS/PANS seriously, let alone knows how to treat it. Bactrim is one of those antibiotics that some families have had good responses to; our antibiotic of choice was Augmentin XR (extended release). I know you've posted on the PANDAS/PANS forum as well, and if you look on the pinned threads there at the top of that particular forum, you'll find a list of doctors who've helped many of us, all over the country. I believe you're going to try Dent, and you already know of Dr. T.

 

For my son, the antibiotics finally "bumped" him out of the deepest, darkest place he'd fallen into over about a 4-month period, following another strep episode. We wound up keeping him on antibiotics for 2 full years, over which he continued to improve . . . sometimes more noticeably, and sometimes at a snail's pace . . . but still improving nonetheless. In trying to answer your question as honestly as I can, I would say that in our case, the antibiotics took away the worst of his psychological demons . . . they corrected his descent into total dysfunctionality. He'd become homebound, weepy, unable to sleep, unable to do anything without feeling distressed, including all the things he'd once enjoyed doing. He couldn't go to school, play, or even enjoy a passive activity like watching TV. Everything made him anxious, everything set him off. Within 48 hours of beginning antibiotics, he was able to rejoin some basic, small, everyday activities, like eating dinner with the family. Within a month of taking them, we were able to integrate him back into school. After about a year, he more or less had most of his "life" back, with friends, a returned sense of humor, etc. After two years, he was very close to being the same kid he'd been before the "great fall." However, in addition to the medical treatment, we never stopped the therapy, and he still needs and uses ERP and ACT (acceptance commitment therapy -- akin to the mindfulness you mentioned) almost daily to contend with certain situations and/or triggers for anxiety.

 

So, my main theme in response to your question here on the OCD forum was that while effective PANDAS/PANS treatment will likely help you considerably in your fight against OCD, our experience has been that with a case which has gone untreated longer, and with an older person for whom some OCD-oriented behaviors have become more entrenched or perhaps even habitual, medical treatment alone is unlikely to completely reverse all the behavioral manifestations. And in our case, ongoing therapy has been an important tool in confronting the remaining OCD, including the intrusive thoughts.

 

Given your history, I'm certain you're on the right track, going after a medical (auto-immune) basis underlying your psychological issues. And I'm also certain that effective medical treatment will greatly assist you in cornering these issues. I just also wanted to share what we have seen to be the continued value of therapy and therapeutic tools in daily life, supporting the brain's return to "normalcy" even after the medical treatment has been successfully undertaken.

 

All the best!

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Thank you!! Its so nice to are other people will help and care!! Right now I'm acting well to paxil and adderall the stimulant made the big change psych wise. The ibeprofin I have been using for 3 days made a huge difference I'm happier and way less brain fog

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  • 2 years later...

We started on the PANS journey two years ago with a sudden onset of intrusive thoughts. The doctor ruled out strep, but we did come to find that he had a high mycoP level. With antibiotics, our son saw a great deal of relief. However, he will have periods where they come back hard & fast. Once we start the azith, they seem to calm within a couple of days. However, he has been dealing with scrupulosity OCD for several weeks now and there will be times when visibly upsets him or he will be mouthing prayers and doing other acts to help him overcome these thoughts. I have reached out to a therapist here in our area of Dallas that has dealt with many PANS/PANDAS patients and the OCD triggered by them. I wanted to know if any of you have seen a decrease in symptoms or level of scrupulosity OCD with addition of antibiotics when it seems to pop up after being at bay for awhile.

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Ladymavs --

 

While I think that scrupulosity, like many forms of OCD, can become sort of a habitual, entrenched response to anxiety which may require behavioral methods (CBT, etc.) for helping put the scrupulosity in its place, I would also wonder if your DS might not have some ongoing auto-immune issues behind this behavior. If he still responds to abx, that would be a clue, I think, that there's either an infection or ongoing inflammation, or potentially both, that would best be dealt with medically.

 

I would encourage you, at the same time, to continue to seek some therapeutic resources as well, such as the therapist you mentioned. Tools and strategies that he can provide your DS and you will be helpful in helping maintain a quality of life and functionality while he continues medical treatment.

 

Good luck!

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  • 3 weeks later...

In this last week, ds (14) has seen major uptick in the religious OCD. We have a session with CBT professional yesterday and it was very difficult for him. I still think the ERP would be good for him and think that we need to push through to break through this OCD as it distresses him greatly. He can't even hear or speak of other religions and questions his Christian faith. I guess its true that the OCD hits hardest at those things these kids valu as he always tries to do right and valus his faith. Just saw Dr. Rao our immunologist and swithched to Biaxin and also he gave us turmeric, nac, and vit c. We will also continue with priobitoic s and omegas. hopefully, we can bring down some of what is causing the flare up. i am still wanting to conitnue the ERP even though initially it may increase anxiety. . If we stop, I am afriad we will not pick it up.

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  • 1 month later...

So, after our recent visit with PANDAS doctor...we decided to go back to the azith 500mg as this seemed to show an ever so slight improvement when we moved to this again from the biaxin (after 30 day course of biaxin). Since we added so many things at once in the mix (NAC, turmeric, vit c) and did not see considerable improvement, so we opted to do azith , probiotic , and omega which is what we had been doing prior to the other supplements. He also suggested that we add inositol (3g per day) and we did this for about 7 days and it seemed to escalate the intrusive thoughts OCD. I have heard that the inositol can really help with OCD and sometimes it takes time to get to right dosing. Has anyone had experience with inositol (along with the abx) with regards to intrusive thoughts ocd? We are also going to re-examine the abx on our next visit in 5 weeks. Doctor has mentioned doxycycline....anyone have success with this one? I am not opposed to low dose SSRI if we need to go that route...guess I am just trying to see if the abx course has runs its life as we are not getting the quick response that we initially got upon original onset back in early 2014.

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Ladymavs --

 

Doxycycline or minocycline? I believe it is the latter that recent research speaks to in terms of its success with OCD.

 

In our experience, as the kiddo gets older, that "quick response" can generally demonstrate some lag time, unfortunately. Many times, we took our DS off abx altogether, thinking it had done all it could, only to realize he was still benefitting but in more subtle, less dramatic and timely ways.

 

All the best to you.

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