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This just came across my FB feed today, and I thought it was interesting: http://medicures.org/british-researchers-may-have-just-found-the-cure-for-multiple-sclerosis/ By synthesizing proteins from the sheaths in a lab and then injecting them into the blood stream at increasing doses, the body begins to learn that they are safe and no longer attacks them. This type of therapy has already been used in treating some allergies, a treatment that is called allgergic desensitisation, but its only recently that scientists have thought it had potential to be used elsewhere. In autoimmune diseases the immune systems sees little protein fragments in your own tissue as foreign invaders and starts attacking them. What we have found is that by synthesizing those proteins in a soluble form we can desensitize the immune system by giving an escalating dose. These findings have important implications for the many patients suffering from autoimmune conditions that are currently difficult to treat, he added. Another option for PANDAs treatment in the offing, perhaps?- 8 replies
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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.