My brain symptoms have evolved over time.
In 2013 - after the first lyme symptoms, I developed some alternating bouts of anxiety with depression.
It was horrible. I felt like I didn't know who I was ( my husband was worried, too)
I kept saying "I don't know who I am anymore". And he couldn't understand what I meant. Heck, I didn't even know what I meant.
Even before diagnosis and treatment, those symptoms subsided.
Then a few months later...I would wake up every few hours during the night, in a panic, gasping for air...often sweating.
Now my main concerns: short-term memory loss, and pressure in my head behind my eyes. The pressure behind my eyes ramped up when I was on Mepron..and it was rather scary at times. It felt like my head would explode..and my eyes would pop out. (maybe slight exaggeration...lol)
I think my CNS is also responsible for the shivering that runs up and down my spine and sometimes down my legs. It's almost as bad as my nerve pain.
Is there a support group near you that you could go to?
I'm fortunate that I still have a few friends that I can see. One is quite supportive and she listens to me talk about lyme and my symptoms. I see her every couple of weeks.
I feel like I've been on the outside of life - looking in as it goes on around me. Feel like I've missed out on so much.
I can relate to a lot of this. Early in 2016 is when my anxiety and depression really really ramped up. Going back years now, I realize that my chronic anxiety was probably lyme all along. Of course I was medicated and it got better.
For 8 years I took the same anti anxiety med and suddenly last year it just stopped and all my anxiety and depression came back like a ton of bricks. But then, as of earlier this year especially after taking the steriods that I believe are responsible for my sharp decline (plus mold and possible reinfection) I started to feel nothing at all. I still feel nothing. Blank. Just constant fear of the problems I have thinking or remembering things.
I was drugged for so many years both with antidepressants and pain meds, I honestly thought for months that getting off all of that was the reason why I didn't feel like myself at all. I still don't. Infact, the cognitive stuff almost seems worse on the abx and herbs. Hard to tell though.
I've been trying to find a support group here for over two months now. I think I may have found one and emailed the administrator just today but I tried that with a facebook group here a couple months ago and received no response so we'll see if I get one now. I don't understand it. Lyme disease is absolutely everywhere here and it's been so hard to find any groups or support. I found a meet up group but they don't seem to "meet up" all that often.
I know I have missed out on soooo much. I haven't been able to work in almost 7 years which means no life either in almost 7 years. I feel so behind and not to have my brain working at all, I feel like I'll never catch up. It worries me that that symptom feels worse then before.
I get a little clearing now and then, but not much. My llmd also took me off one of my abx which I still don't understand. So the fact that I'm no longer on a combo worries me to death. If anything I feel like I should be on more, not less. I'm at a loss.
Speaking of eyes, have you or anyone reading this, were your eyes extremely bloodshot and sometimes burn? I never saw all of this blood vessels in my eyes before and they look so glassy. This has only happened in the past year.
If I have had this for over a decade now and I believe I most certainly have, why would this happen just in the last year and not before? Will they ever clear back up again? I see no signs of this getting better so far. I'm wondering if something else might be causing it or just lyme or bart? Or perhaps another coinfection.
I should just get "confused" tattooed on my forehead at this point. I guess it's preferable to people just thinking I'm stupid. Which i feel constantly now.
That's awesome that you have a few friends to talk to and who are supportive. I really wish I could say the same although, if I can't recognize myself anymore, I guess I shouldn't expect my old friends to either. My personality is just blank now.