mmiglio Posted June 30, 2015 Report Share Posted June 30, 2015 My daughter is supposed to start at Rothman on the 14th. I made this appointment many weeks ago when we were in a deep hole. Now we are starting to see some light, and I'm wondering if it is "necessary." I guess this is my big question... if we get the infections under control that are causing the OCD symptoms (and also supplement to deal with the genetic mutations) will the OCD go away on its own (and through proper supplementation to address COMT/MTHFR mutations)? Her LLMD suggests that long term OCD causes bad habits with the central nervous system that are hard to undo and ERP is the best way to do that. But what is long term OCD? She's "only" had it now for six months or so, and it is really being helped right now by low dose SSRI (see below). I'd really rather not spend three weeks (or more) in St. Pete this summer. Of course we are all doing things we don't really want to do. But mostly I don't want to "waste" the time and the money if the OCD will eventually go away on its own. But if we're going to do it I'd rather do it during the summer. And we do not have an ERP therapist in our area. We do not have a PANS psychiatrist (none in our area) and we have never seen a neurologist (have an appt on the 16th that took three months to get), and we love and trust our LLMD so we are letting her drive the bus so to speak. She says Rothman is a good idea but I'm no longer feeling it in my gut. Thanks for your advice. I know no one can make this decision but me. And I know no one can tell me for sure that OCD will go away when infections are "healed." I'm just wondering what your experiences have taught you. For background, she was diagnosed with PANDAS in early March (after several months of increasing OCD behavior) and started Augmentim and then herxed pretty bad. She has high strep and myco p titers. Switched to zithro, started detoxing and switched to a LLMD who suggests a tick borne illness and possible bartonella (switched to PANS diagnosis). Will begin a pulsing abx protocol in a few weeks but first prescribed low dose Luvox to calm her nervous system down a bit. We are also supplementing with CBD hemp oil. That combo of 37.5 mg luvox and 10 drops hemp twice a day has her OCD symptoms under control to the point that most days of the last few weeks have seemed almost "normal" with only a flare every few days. Link to comment Share on other sites More sharing options...
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