Posted 5/14/2013 6:17 PM (GMT 0)
I was diagnosed with Lyme back in 2006 - have had two PICCS with Rocephin and Zith and then about 1 1/2 to 2 years of orals off and on around that time also. This helped me to recover about 70 to 75 percent I would say from most of my neuro symptoms that were plaguing me due to insurance had to pull the second PICC and can't swallow orals anymore and doc stopped treating that I was seeing...so jump to this year...
In January had an "episode" went to hospital as family thought I was having possible stroke: left side weakness/numbess in arm and leg, some double vision, some confusion, a little trouble with speech, and the alike. Hospital did CT scan and neuro exam - said CT was clear but due to symptoms and neuro exam they wanted to send me to bigger hospital. I was there for four days. Due to extreme anxiety and claustrophobia I could not have an MRI (until over a month later when we found a hospital that would put me out and it was clean) but they ran other tests which were okay. They said it could have been a TIA which wouldn't show up on a CT but they weren't sure. Was sent home with PT orders as I was still having some trouble using left side (never got PT was my Primary said neuro doc needed to order - was a mess) but eventually got use of left side back overall.
Now every 7 to 10 days I have these "spells" like that one but with a little worse speech (my kids say I said robotic) - I feel confused and like I am searching for words. I have the left sided weakness, brain fog, sometimes visual disturbances, confusion (sometimes it is pretty bad). My neuro ran Ambulatory EEG for four days and found nothing as they thought might be seizures (but I didn't really have a big episode while wearing it but did have a smaller one so I think it should have showed up). So my neuro said they don't think it is TIAs or strokes (not sure though but don't think so) and not really sure. So want to send me to someone else. They did mention that it might be "conversion disorder" - which means all in my head basically. When they said that I about freaked out!!! I have been here before when I was diagnosed with Lyme and everyone thought I was crazy and making up symptoms. I told them I would rather just deal with my symptoms than be labeled "crazy". She kept encouraging me to go to the other doctor because we have to rule out serious things first. I feel like an idiot if they can't find anything - This is how I felt back in 2006 when I first got sick with Lyme....I just had doctors telling me it was my anxiety, etc.
I just wondered if anyone had heard of anything like this with Lyme...I know it can cause all kind of things especially since I had such a bad neuro case. Also forgot to mention starting to have memory problems and like "space out" at times even when not in a "spell". I feel like it's having an effect on my day-to-day life the more spells I have.
Thanks in advance for reading this long post. I didn't know where else to turn.
Blessings,
Leah