I'm doing very well on ketek. Just taking a break from mowing the lawn & opened to this post! It used to take me 6 days to mow the lawn because of my fatigue. I'd do a couple swipes and that would be all I could do in a day. My neuro is still a huge issue. But, my aches and pains have been reduced significantly, my energy is just continuing to climb.
I've gone from thinking I would be in a wheelchair from earlier in the Spring to being out hiking almost every day.
This to me is a miracle.
I am not on any other antibiotics. I did IV pencillin G (24mil.units a day) for 7 weeks this summer but relapsed as soon as I came off.
I did a flagyl/biaxin combo last winter and was terribly ill the entire time. So bad, that my doc took me off. That's how I came up with the name Sleepy. I never left my bed.
I was plagued with horrible pain in my head and face like my brain was being blown out of my ears and that has completely vanished.
There are a lot of little symptoms that have vanished actually. But, I am still extremely tired at times and it still hits just out of the blue.
I have the energy to do something, but just for a short while and i have to sleep. I am very careful to respect that and sleep when I need to.
I still get this brain exhaustion thing I can't describe. I wish others could describe it better. But, someone will be talking, or I'm trying to figure something out and all of the sudden I get this intense pressure and I can't think and I can't hold my head up and I have to lay down. I get really confused at the same time & I just can't think at all. It hurts to try to think.
It's not something I could take any drug (like an advil)for. It's like my brain is suddenly turned to sludge and nothing goes in and nothing goes out.
The ketek has not helped that part at all. I have to avoid stress and stimulation at all costs as that causes the crash.
I don't know if that is to do with where the lesions are on my brain or what.
Anyhow, I rave about the good results I have had with ketek though.
No GI problems. No yeast issues.
I am having vision problems which got worse when I went onto the ketek. I have dizzy spells that I did not have before, but not that often. Nothing that scares me or anything.
I spent the better part of the last two years in bed and even on the IV penicillin did not even come close to doing this well.
The fact that there have not been any long term trials with this drug is a bit disconcerting.
Anyway, good luck. If I relapse I'll be letting people know.
My doc wants me to start plaquenil and I'm just freaking on that. Now that I'm awake, I don't ever want to go back down that road again. I am actually trying to find out if anyone has considered cognitive enhancing drugs as a compliment to abx treatment to see if that helps the neuro problems.
Sleepy