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Lyme Disease and Chiari-1 Malformation?

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?
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428506 tn?1296557399
I'm also not knowledgeable of this topic, but we used to have a regular poster here, user "patsy10," who wrote about how she developed chiari during her illness.  Here is a link to a thread with some of her posts.  I'm not sure she comes to the site anymore, but you can try to send her a Private Message through the site.


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.

Avatar universal

I'm not familiar with the issues you raise, but there have been some posts here on the topic of Chiari malformation.  If you type 'chiari' into the search box 'search this community' on the right side of the page a few inches from the top, you'll get the posts mentioning it.  

Good luck, hope you find some answers!  I'll also send you a private message about some other things you asked.
Avatar universal
I recently got diagnosed with Chiari Malformation type 1 after an MRI. I've had pain in this area of my head my entire adult life. I had Lyme when I was 8 y/0. I'm wondering if the malformation was caused by the Lyme. I've only recently dived into this crazy world of conflicting opinions about Lyme disease, but so far I'm seeing that Lyme is known for causing swelling of the brain, and on ninds.nih.gov they are are saying that Chiari malformations can be caused by "traumatic injury, disease, or infection". There's clearly the possibility of a connection.
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