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Everything posted by kakrpa

  1. Completely understand - have you asked around here for any PANS/PANDAS Dr's in TX??
  2. Highly recommend scheduling a visit with Dr. Trifelleti (or another Dr ppl may recommend on here). He's the one who ordered all of the tests, even genetic ones, and eventually figured out what was going on with me when nearly every other Dr told me to get CBTherapy. Gee, thanks. Btw, I had been doing CBT and it was not helping. Also, when I indicate pneumonia was likely my trigger, that's also known as myco p (mycoplasma pneumoniae).
  3. "If you light a lamp for someone else it will also brighten your path."
    - Buddha

  4. I'm so sorry to hear of what your daughter and you all are going through - it sounds tough and incredibly frustrating. I won't say you're doing anything wrong as I think we are all doing the best we can given the circumstances. I truly feel for your daughter as I have dealt with those horrible OCD thoughts myself - I was dx PANS almost 5 yrs ago (young adult onset w severe anxiety that immediately took hold as the pureOCD subtype). It wasn't strep that triggered it for me either (my guess is it was brought on by the pneumonia I battled immediately before this illness). While I would typically second anyone refusing psych medications, I will tell you that I would not have made it to today without their help along w the help of a great psychiatrist. I guess I'm saying please don't shut the door on the potential for her to find some relief in even just one medicine, if it gets to that point. I know there are potential risks and benefits to each approach, just please keep an open mind. Have you heard of TRS by Coseva, before? I just placed an order this morning and would like hear from anyone who has tried this. If you haven't heard of it nor tried it give it a search. It's premise is interesting and I'm curious to see if it will help me. Btw, I am in no way advocating nor endorsing. Wishing you and your daughter the best. Please give her extra hugs as what she needs most right now is love and acceptance, and to know those thoughts are not HER THOUGHTS, but rather manifestations of the illness itself. They do not define her. She's likely very scared inside - it's hard to understand what's going on (even for an adult, let alone a child). (((Hugs)))
  5. I agree with finding another Dr. who can help with Lyme, yet also support you with other types of medicines (anti-anxiety, anti-depressives, etc. at least temporarily). You don't deserve to suffer like this, no matter what the underlying issue is - and it sounds like what you're experiencing imho IS significant OCD with anxiety and depression. I've been here too, trust me, and the longer I waited to get on medicine (anti-anxiety, anti-depressants, etc.), the longer it took to get to a much healthier place to where I could better handle the issues at hand.
  6. I've wondered about this supplement too! Don't really want to spend the money on more supplements unless I know it's as good as it claims to be. Does the practitioner that recommended it to you have others taking it? Would he/she be willing to reach out to them and ask if they'd be willing to talk to you about their experience with it??
  7. Agree - total crap to portray a serious illness/issue in such an elementary way. Glad to see Diana's response!!
  8. That's so sad! I'm curious to know how the rest of this episode goes...how does it end?
  9. I completely agree with MomWithOCDSon. It's not like anyone wants to be in this situation, but it is what it is, for now. If that means you need to keep him and your family safe, then medicine might be appropriate and as a temporary measure. I used to deal with tremendous OCD and finally found relief with appropriate psych rx's. I was so afraid of having to get on them, but my life would surely be different (worse) for me now had I not decided it was time to put my ego aside and get the help I needed (speaking for myself only here). I hope this helps you, your son, and family ((((hugs)))).
  10. Totally understand this...my DS10 is nearly the same. Although I'm not sure he's PANDAS, but does show some signs of OCD. It's frustrating for sure.
  11. So sorry your family, and esp your daughter, are going through this. I imagine she must be very scared inside, not understanding what's going on, etc. I am an adult with possible late adolescent onset PANS. Hard to know for sure in my case. For your daughter, what kind of bloodwork/tests are being done??
  12. 1. Likely a drop in efficacy of the med(s) - needing now a higher dose and/or augmentation with diff meds. 2. Any additional stressors? School/life balance?? My two cents
  13. Hi Wombat140, I have read everything you've written and have tried to help...I'm sorry I don't have a good answer for you, and hope you find the help/answers you need. (((hugs)))
  14. Hi Wombat140! Sorry to hear this is still upsetting you, but it's understandable (unfortunately). Did the suggestions I gave you help at all? Have you recorded yourself repeating the word and listening to it?? I can tell right now the OCD has its stronghold on you with this word. I don't mean to diminish it's power over you in any way, nor do I want to make it seem like it's an insurmountable task to get through/over. You have to start somewhere - what are you thinking of trying?? Take baby steps here, and build your way up. ((hugs))
  15. Hi Wombat140, I'm not sure why ERP is more suggested than CBT. I've had both. Might be a good idea for you to research ERP on Youtube. So, let's say my current OCD fear is of being gay. ERP therapy would say to look at pictures (not porn!) of two same sex individuals walking together, reading a love story about a gay couple, etc. The idea behind it is to desensitize you to your fear. So, with your "word", you might consider recording yourself saying the word, repeatedly, and then playing it back to yourself throughout the day. Lmk if any questions - I hope this helps you!!
  16. Hi Wombat140, I deal w severe OCD/anxiety (actually just got DBS for it), but the best way I know how to approach word fears are to specifically expose yourself to the fear itself. That's the idea behind ERP therapy. Let me know if I can help further!
  17. Wombat140 - yes, I've dealt with this too (especially fear of the color red, which is my favorite color)! If u can't go down the med route, I'd highly suggest treatment with a therapist trained in ERP (exposure response prevention).
  18. Chocolate - only thing I can think of for that is the craving for magnesium and an endorphin release?
  19. Just a 2 second guess here, but wouldn't the charred portion be carbon / charcoal (an absorbent).
  20. Hi DC24, I totally understand intrusive thoughts - I deal with pure-OCD. There's not one supplement that will take it away, but magnesium taurate (or any -ate form) helps chill me out a bit. Please know you're not alone - discussing intrusive thoughts is hard. That's also a good point to understand - they're just thoughts. If they were thoughts you would act upon, then they wouldn't bother you in the slightest. With intrusive thoughts that bother you, cause increased anxiety, etc. that's exactly what OCD is. I hope this helps- again, you're not alone ((hugs)).
  21. I'm so sorry to hear what you all are going through. Fyi, I'm 38 now, but I began experiencing severe anxiety/OCD at age 22. I can tell you without hesitation that I would not be here today if it weren't for the help of psych medicines. I didn't want to be on them/need them either (who does), but resist all you want at/for whom's expense?? My two cents is to find a great youth psychiatrist and at least TRY it...sounds like the poor girl needs some relief.
  22. Great question - I don't know but will be curious to hear others' responses.
  23. I'm sorry you're struggling right now...it will get better, we have to believe this. Are you on facebook? If so, please join the group linked below and post your question there as well. HTH! https://www.facebook.com/groups/189241844607935/
  24. Thank you both so much for your input...interesting thing is I went to my pharmacy on Sunday to pick up a rx for my husband and they had an rx ready for me as well. I asked what it was - I wasn't expecting anything, yet sure enough it was minocycline! Either his staff decided to call it in or he did it himself. No idea why they said no in the first place and then changed their mind. I totally agree about ordering online not being ideal (for many reasons), but since he had indicated what should be prescribed it seemed worth looking into. Started minocycline Sun night - will keep you posted (no noticeable effects just yet)!
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