My LLMD suspected a Bartonella co-infection even though I tested negative for it 4 times.
I was 750mg, once a day. Exactly at the 12 week mark -- OH! -- I wanted to die.
My original lyme rash broke out (itchy like all heck). A new rash, perfect bulls-eye, popped up behind my left ankle, and I broke in weird red/purple spots. These spots looked like elongated bruises and sometimes they came in pairs. That's a definite sign that Bartonella was present; Bartonella is also called Cat Scrath Fever in some cases.
The foot pain was so bad, the only way I could walk was this Frankenstein-ish shuffle. When I would go to take a step, the heel of back foot rises so I can get momentum to take the full step.
Well, I felt as if that back foot was going to rip in half right along my instep. It was horrible.
So I would walk without bending my feet.
I also arm pain, back pain, neck pain and hand pain. When I was Herx'ing and the syptoms got bad, I had to walk bent over as my back hurt so much.
I spent 100% of my time on my sofa. It was pretty gross, if I dropped something (even pizza or soup or a drink). I slept there because I was way too fatigued and in so much pain that I could not make it to my bedroom.
I woke up there and worked all day there (I don't know I stepped in lucky poop, but I can work from home and I held my job throughout my entire ordeal). I would days without brushing my teeth (gross, but true) because the thought of getting up, walking to a sink, having to lift my arms to find the toothpaste and brush -- I just blew it off.
When I did have to go out (my daughters graduation or something big) I could not get up the stairs to shower so I used Wet Ones to clean up.
Most ppl just stared at me in the grocery store or church or the pharmacy, and had that expression of "Bobby junior, stay away from the weird lady who walks like Herman Munster and has spots all over."
My family and friends avoided me (they still do). I felt isolated. I taught my kids how to use my debit card so they could shop while I stayed in my truck.
A lot of our grocery shopping was done at CVS or Rite-Aid because the actual grocery store was a few more blocks farther.
I had felt that I wanted to die. I would pray at night to God and ask him to take me since I could not tolerate the suffering anymore. I wanted a new caregiver for my kids since I was too exhausted and painful that I couldn't parent. I simply wanted to go away and not feel the pain, fatigue, complete loss of balance, amd my brain was buried deep in a marshmallow.
Levaquin has been known to cause damage to tendons so be careful, keep an eye on what kind of pain you have and if feels like it could be tendons, call your doctor as soon as you can.
THERE IS GOOD NEWS!!
After being on Levaquin for 9 months, my brain fog went away, my hair began to grow in, I could remember things, I could talk fast and watch TV as I folded clothes!!!
The pain was beginning to diminish, I could walk to my mailbox (yea! that was a big deal for me), I could listen to music and drive at the same time.
On a good day, I would try to take care of 2 errands. Sometimes I did it, other times I did not.
My LLMD took me off meds (for the life of me I can't recall why) for a month. 12 weeks ago she put me back on it and boy-oh-boy the pain returned as expected and I swear it is worse this time. The spots aren't as bad as they were before. My brain fog is still better, although when I'm Herx'ing it gets bad again.
Please hang in there. MY LLMD prescribed some painkillers for me. My current pain would keep me up at night. I feel as though flaming porqupines were strethcing every bone and muscle in my body.
I know how tough it is. There are some painkillers do not make you feel dopey or spacey. There are also some natural creams I have tried that helped a bit.
I got better on Levaquin and I pray that you do also.
Beating Lyme and co-infections can be a heck of a fight, and you have to do things that you don't want to do, and you may have to hide your suffering from co-workers. So hang in there.
Peace and health to you,