Hi NJLyme and welcome.
I suffered from major neurological problems with this disease. I had trouble concentrating, I had trouble remembering simple words, I could not respond when someone spoke to me and my short term memory was a joke.
If I felt "good" one day, I would drive to the grocery store, turn off my truck, put the keys in my pocket, gather my list (oh God did I need lists - but I usually forgot them at home), feel my pocket to make sure the keys were there, get out of my truck and stand up, pat my pocket again to make sure my keys were there and then shut the truck door, walk towards the store and then .... WHERE THE HECK WERE MY KEYS?????? .... brief panic until I remembered they were in my pocket.
sheesh - scary way to live.
I had to keep a full-time job (still don't know how I managed to do that!!) and I would sit on the sofa with my laptop and work, TV on low. If one of my kids walked into the room and spoke to me (even just "Hi Mom."), my brain felt as if 2 trains had just crashed and I would lose all awareness of what I was doing or what they said. I would just stare at them with tears in my eyes.
I had such mental fatigue, it felt as if my brain wasn't firing; not just firing wrongly, not firing at all.
I had moments of unprovolked rage. I would cry watching a muffler commercial. I had thoughts of suicide. I felt as if I was stuffed inside a giant marshmallow - everything looked hazy and far away. My mind was more than foggy - it was like a slow cold ocean current down in the dark.
I missed my brain so much. I missed having thoughts flying through there. I hated being slow, unresponsivess and forgetfull.
I tested my IQ because I seriously thought I was losing my mind.
I also had physical symtoms: vomitting, rashes, pain, complete loss of balance, vision problems, daily fevers, hair loss, bottom half of my face numb, weight gain, etc.
If I did have a "good" day and I went to the store, I was afraid of people looking at me walking funny.
I don't know how, but here I am, 3 1/2 years into treatment and I can think again! I can multi-task, I can scold my kids, I can remember garbage day, which way to drive to get to work, and I actaully started cleaning my room!!
Major miracle for me.
I was so very very sick. I worked from home, lived on my sofa because it was too much effort to struggle to my bedroom each night. On bad days I could not even shuffle to the sink to brush my teeth.
Once, my daughter made me a bowl of soup. She walked over to the saofa, handed it to me and my eye-hand coordination didn't work and the soup ended up in my lap. Instead of jumpin up and reacting like a normal person would do, I just sat there and cried and cried.
I could not do dishes, shower, climb to the second floor of my house, or get my mail from the mailbox everyday.
I taught my kids to how to use my debit card so they could grocery shop while I sat in the truck.
Anyway ... enough about me. I know how bad you feel. I've been there. I know exactly how it feels. I know what is to be so far down in a fog that you feel you'll never get out.
We've all been there. We remember how hard it is to suffer so bad, day after day, week after week, and just keep plodding along.
Hang in there! I was on IV Rocephin and IV Zithromax for a year.
The thing that helped the most i my recovery was to see a Lyme Literate Medical Doctor (LLMD). I see Dr. E in NJ. Very very good caring doctor.
The 2nd most helpful thing for me was to destroy my co-infection first. I have Bartonella and Lyme. I was on Levaquin, an oral antibiotic for Bartonella, for nine months and TAA DAAA! ... my brain came back. I could talk fast and think fast again - what a miracle.
The IV Rocephin was agressive antibiotic treatment, but without taking care of my co-infection first, the Lyme wasn't going to budge.
I tested positive for Lyme but negative for co-infections. On a hunch, my LLMD presrcibed me the Levaquin and almost immediately I began to Herx badly. But nine months later - yee haw - I had my mind back.
Hang in there. Educate yourself as much as possible. Try to learn about detoxing, eating healthy, alternative therapies and drugs. Try to arm yourself with knowledge.
This disease did not kill me. I sure felt like it was killing me, but it didn't.
I am much better now, so you keep fighting and treating and taking meds and get that IV and fight with everything you've got.
This board is great - we've all been there. Now here I am running errands - never thought I'd be doing that again!
Peace and health to you,