I have a similar history
The LLMD referred us to two highly credentialed neurologists. One stated that lyme might have triggered an autoimmune response which led to polyneuropathy. It appears to me, a layperson, that would be extraordinarily unusual for lyme to produce the degree of disability she is experiencing – particularly in the face of 6 months of antibiotics.
My history is similar to your sisters. I had undiagnosed lyme and co-infections for many years. When I finally got a lyme diagnosis, I was very ill and put on IV abx. Initially I saw symptoms improvement, but then started a path to neurologic decline and was immediately referred to a neurologist experienced with lyme and movement disorders.
As my neuro described it to me, the lyme spirokete is a very aggressive bacteria. It will hide in, and infiltrate cells of the body on any level. It seems at times that treating with antibiotic in some individuals drives the spirokete deeper in places in the body where it previous had not been. The spirokete is very intelligent. Our immune systems try to be equally intellegent. When the spirokete goes to hide in the myelin, the immune system goes after it. This is were the immune system gets confused and damages it’s own cells trying to get rid of the spirokete.
This description makes sense to me. I have been on IVIG for almost 2 yrs. I had severe seizures, balance issues, sensory loss all over my body, temperature regualtion issues, swallowing and digestive problems and respiratory muscle partial paralysis.
Everything is better… not gone, but much much better. After my first dose of IVIG, my continuos tremors stopped. From there, it has been a slow and often continous up hill journey of improvement.
I hope you sister has similar results. Send me a private message if you wish and I’d be glad to arrange to talk with you and her.
She is indeed blessed to have asister who cares so much.