Anyone have experience dealing with symptoms of Lyme Disease and Chiari-1 Malformation? I've had Lyme and Babesia for 1.5 years, first 5 months untreated. I've had all sort of symptoms, including horrible migraines and pain from spinal disc rupture and herniation.
Recently my LLMD had me take a brief break from oral antibiotics after a year of steady treatment to help my guts calm down, and I had what seems like a recurrence of Lyme in my upper spine. I had MRIs yesterday which showed new herniation in my neck, but also an incidental finding - a Chiari-1 Malformation (where the lower part of the cerebellum of the brain is pushed into the spinal canal). What!? So now I'm learning about this and waiting to get an MRI of my brain and to talk to a Neurologist to sort out symptoms. Can anyone recommend a Lyme-literate Neurologist in the Bay Area?
Also, I saw somewhere that Chiari Malformations can be caused by infection, but I can't find any more information than that. I have been taking varying doses of Diamox every day for a year for headaches, prescribed by my LLMD for pressure caused by inflammation of the brain from borrelia infection. Symptomatic Chiari-1 Malformations can cause pressure headaches also. Anyone ever heard of a Chiari Malformation caused by infection?
http://www.medhelp.org/posts/Lyme-Disease/Low-Lying-Cerebellar-Tonsils/show/951544
I'm on the opposite coast, and I saw 4 neuros in a single year. None of them were LL, I think it is difficult to find LL docs in that specialty. If you can find local support groups, they may be able to advise you.
I do think that sometimes with Lyme we forget that there may be separate issues, even if triggered by Lyme, that require separate treatment. I recently started seeing a chiropractor and have come to appreciate this. So I think your attempts to diversify your strategy is wise.
Sorry to not be of more help, and good luck.