I had lyme disease 20 yrs ago. Tested positive but wasn't treated long enough. Though I thought I was.
Maybe 5 yrs later I started having weird symptoms that didn't fit FM but was diagnosed with it. (they were more like MS symptoms)
Then 5 yrs ago was sent to neurologist for double vision and pretty bad headaches (the pins and needles from 15 yrs ago still continued.) My head MRI showed lesions. He wanted to say MS but said wait and see what happened.
Then not quite 2 yrs ago I was advised by a friend who had lyme to see a lyme specialist. Lyme Dr retested and found I was also co-infected with Babesia and Bartonella. The lyme was active and had years to spread (which it did). Nine months into treatment I broke out in a bullseye which indicated active lyme (even by CDC standards)
Right before I saw the lyme dr I started having severe tremors. They continued on and off for the past 2 yrs. My PCP saw the last onset of tremors and how they affected me. (couldn't walk, problems with speech, co-ordination) and she told me I needed to a neurologist again.
So I went back to the same practice but wasn't able to see the same dr from 2002 (last time I saw him.) The Dr I saw reviewed my file and the notes from before, saw a spect scan report from a yr and 1/2 ago. Plus he saw my symptoms which had continued for over a week when I saw him. He diagnosed me this past week with demylinating disease of cns from lyme disease.
MS is a demylinating disease but in my case I know what causes it but we haven't been able to kill the bacteria or babesia parasites. And the neuro wasn't sure if my demylinating disease was from live bacteria or the dead bacteria that keeps circulating in your cns for years. (If it ever gets out)
He is setting up an appt for another MRI but it has to have pre-authorization and that can take 2 wks I was told.
I am having problems with my liver so we are not able to do much in the way of treatment for any of my problems. I am on diamox, neurotin 600 mg, and baclofen for the tremors. Yesterday my tremors and headache was better, today they are not.
When I look at the MS symptoms, I realize I have most of them.
Please see a lyme dr but also realize that demylinating disease can occur from a bacteria such as lyme.