Posted 9/6/2017 10:44 AM (GMT 0)
Hello!
I am new to this forum, so please have patience. I hope I am posting correctly!
Here is our situation:
My husband was misdiagnosed with Parkinson's in November 2015, started on Sinemet to "see" if it was PD.
Throughout that following year, it became evident that something else was going on, so we made an appointment to see a
neurologist/movement specialist. He agreed that it was not PD but possibly Lewy Body Dementia but would need to perform tests...
And so we began...
We live in a remote area, so travel is necessary to seek specialized medicine.
During our drive for the second round of tests, MDH came down with pneumonia and was hospitalized for 12 days.
Upon discharge, after many (!!!) tests, including Bronchoscopy, treatment for pneumonia (azith and ceftriaxone IV), and without a place to live other than hotel, we decided to relocate closer to family in major medical community.
Answers were still elusive, a PETScan showed condition consistent with LBD and medications were added. We were sent home to live out his last days : (
In reading an article about Tick Bites, I discovered that Lyme disease can cause neurological issues. No doctor had ever mentioned or suggested testing for Lyme infection!
The above, of course, is lacking in detail (I could write a book!) but enough, I think, to give an idea of what we are facing.
We need help. I asked our PCP to run a Western Blot - results were positive 31, 41, and 58 but CDC negative.
We need a LLMD. Any help this forum can provide is very much appreciated!