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I am very new at all of this so please bear with me. After years of trying to figure out what was going on with my daughter, she recently tested positive for mycoplasm, bartonella, HHV6, and some bands of lyme(though inconclusive). Mycoplasm showed current activation and past (IgG and IgM). Our current struggles started in December with a severe bout of Influenza B that dragged on and on resulting in severe depression, rage, mild ocd, intrusive thoughts, and ultimately she stopped eating. Completely. Hospital stay was pretty useless and nobody would even remotely consider PANS/PANDAS (I begged). Local doc listened and ordered panels. Bingo...looks like mycoplasma is a BIG trigger for her. We started her on azithromycin but my daughter got so much worse on azithromycin that we had to stop after a couple of days (She tested resistant to amoxicillin). 12 days ago, she started doxycycline (100mg am and 100mg pm) to see if she tolerated it better. The first 4 days were an absolute nightmare with all the worst behaviors surfacing. Just when I was about to stop the doxycycline, everything changed.....my daughter came back. More like the new and improved version. She is the best we have seen her in, well, I can't even remember seeing her like this. Even she says that she feels different and she feels happy. I am trying to remain positive and enjoy this turnaround but I find myself waiting for the other shoe to drop. Is it possible that the doxycycline has hit the mycoplasma? I know it's not the first choice for treatment, but there is no other explanation that we know of and it seems to be helping. I still want to get her into a PANS specialist. This will take a long time and I don't know how long she should stay on the doxycycline. Has anyone gone this route before? Thank you all so much! QueenMother
