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  1. Hi, My little niece is struggling. Dr T says her Cox socci is very high so he started her on Valtrex. It calmed her 60%. She has become progressively more fragile since the PANS diagnoses 6 months ago. Anxiety attacks and emotional deregulation. Cortisol levels are very high as well. Lyme's Doc G in PA doesn't think its Lyme's related based on her history and Igenx test and so she is only been on Valtrex. Yes!! She is Somewhat calmer on but how long can she stay on this stuff?? AND she is NOT completelt stable yet!! Dr T started her on Zith (at mom's request bc my son has Lymes/PANS) on Sunday and she almost immediately went extremely anxious. Could not calm herself down. This reaction was on half dose too. Was trying to stay slow and low but wow she responded. Dr T says just remove it. My question: What does this mean??? It must be indicative of something here. Does this point to her PANS being Not just Viral cause. Too soon to be a herx reaction. Correct? Parents removed her from Zith and she is back to 70% OK but still so fragile. Mom cant leave her side most of day and has to keep busy all the time with her. This is very difficult for the family . I am afraid this is beginning of PANS and want to find the trigger. Thank you for any advice.
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