cynditk Posted February 9, 2012 Report Posted February 9, 2012 Hi all, After seeing Dr.B and having his first high dose IVIG, he prescribed two new antibiotics for my son- Augmentin XR 2000mg daily, and Doxycycline 2x a day for suspected Lyme. Previous to this my son had been on Azithromyacin 1000 mg daily and Clindamyacin on and off when he tested positive for strep.He has also been on prednisone on and off since last April, mostly on because he was non-functional off it. He had three days of being back to his normal self after IVIG and before we started the new antibiotics. Then he started to go down hill, so we started on the new abx. The first three days of the new abx we great as well- he was doing awesome. Then he began to have severe symptoms, which were similar to his initial presentation of PANDAS last April- he could not sleep at night at all, he has waves of fear and anxiety with nothing causing them, his OCD has flared greatly, he says he now can't think clearly at all-he can't even finish a thought, and now his body jerks and spasms much worse than it ever has before-the jerks don't seem like tics, they're like big waves of energy that move through parts of his body, and he just shakes that body part, but I watched him sleep and he has them in his sleep too. He also has instances of being really angry and rageful. I talked to his ped who knows PANDAS, she said try large doses of Lorazepam to help him sleep. So we've been trying that since last night, and it does seem to help him sleep, although it doesn't take any of the other stuff away. I called Dr.B's office today, haven't heard back yet. He said that since Lucas had been on steroids so much, that treating Lyme would be a lot harder and maybe this is the herxing that everyone talks about when treating Lyme? Any PANDAS/PANS people see a worsening of symptoms after hd IVIG and new antibiotics? How do you get through this? Anything help?
ShaesMom Posted February 9, 2012 Report Posted February 9, 2012 I'm a PANS/Lyme Mom (dd is also a monthly IVIG patient) and a Lyme patient myself. Sounds like your son is probably experiencing herxing from the doxy and possibly the IVIG.
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