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Caution re: Tindamax use if PANS or PANDAS
T_Mom posted a topic in PANS / PANDAS (Lyme included)I want to post this in case others are in the same position--I feel like yelling: Warning, warning!!! Tindamax had a HORRIBLE effect on our PANS/PANDAS d (13). She has been out of school for over a month now with classic PANS OCD/ticcing. Regretfully, after testing for lyme the blood results indicated some ind. bands. Tindamax was tried. We lasted two Saturdays, and then the prescribing llmd doctor said to stop and to increase Augmentin instead. (We had a weekend phone appt. in desperation.) Tindamax is supposed to help with lyme, as it crosses the barriers and is a known "cyst buster" -- Well, if your child is in a PANS or PANDAS exacerbation I cannot help but wonder (AFTER our experience these past two weeks) if the use of Tindamax could accelerate the autoimmune reaction -- make it worse -- as it is said to permeate "walls"-- if your child is in a PANS AUTOIMMUNE exacerbation could this open the flood gates? I feel we all need to be very cautious about treating "lyme" if your child has PANS. Yes, PANS may be triggered by a reaction to lyme initially, (that makes sense.) However...since PANS is an autoimmune reaction, if it is treated as lyme I can't help but wonder if great caution needs to be used as to how and with what it is addressed. Our daughter's OCD went off the charts, she developed a screaming vocal tic, screaming at us, counting rituals, destroying the house again, OCD intrusive thoughts take-over, it has been HORRIBLE!!! OK, so at first I thought "possible herx"...but really??? Finally we called the lyme doc this weekend and he said TAKE HER OFF--she is having a BAD reaction. TRY AUGMENTIN, double it to the SS dose of XR 2000mg a day and see what happens in a few days. This has all been a terrible episode -- but then to have this TINDAMAX issue...