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Anti-Neuronal Antibodies Negative- Now What?
Sternjs posted a topic in PANS / PANDAS (Lyme included)
Our 11 year old dd has been out of school all year. Almost a year in, she remains positive for Lyme, Strep (asymptomatic), Mycoplasma, Coxsackie, and HHV6 along with a highly elevated IgM though she has been thoroughly tested for allergies all of which are negative. All this despite 6 months worth of everything from Ceftin to Biaxin, to Doxycilin, to Levaquin and other antibiotics as well as a small store;'s worth of supplements and homeopathic support.. She has been diagnosed with encephalopathy caused by an autoimmune response to the various antibodies. We have seen Dr T and are now with Dr B in NY both of whom have been great but we still don't have our girl back. Dr B believes the next step is IVIG but of course insurance turned us down. He had her tested for anti-neuronal anitbodies in an attempt to find something the insurance company would more easily recognize as appropriately treated by IVIG. Sadly/happily (not sure which) the test came back negative. I'm sure we will appeal the original insurance decision but we are very lost about what to do next. We've tried CBT but our dd won't or can't (so hard to tell) participate. Do we save our money and bring her to the Rothman Center instead or go all in on the IVIG? Is anyone aware of a comprehensive treatment center in the northeast? Has anyone else been lost in the wilderness? My wife and I will never quit looking but could really use some fresh ideas...thanks for any help.