After being on Ketek for 8 weeks I am severely worse. The burning pain is everywhere and last night I had hallucinations and felt something move inside my head. I just sent my doctor a fax to ask them what could be going on but haven't heard back yet. From experience has anyone got like this after this treatment time and if so what have you done-kept going or discontinued the drug. My menstrual cycle is about a week away but I usually don't get this bad with symptoms. Appreciate your help!
Posted by paulscha (Member # 6334) on :
In my exeperince, the only drug on which I experienced hallucinations was Biaxin, which belongs to the same class of drugs as Ketek. No more Biaxin, no more hallucinations.
In my case, I'm pretty sure that was a drug reaction, not an inevitable consequence of Lyme die-off in the brain. I've been on regimens since that target the brain a lot more effectively and had no hallucinations of any kind.
I'm not saying this will be true for you and the hallucinations you're experiencing on Ketek, but it might.
Paul S.
Posted by DolphinLady (Member # 6275) on :
For me the hallucinations were happening before treatment and then a few months into treatment(months). But they went away as time went on and I got better.
Check with your llmd just to be sure.
Posted by tjtighe (Member # 4057) on :
I have been on Ketek about 8 weeks, also. Had to back off and begin again due to severe headaches. I was supposed to take 800mg. at night, but now taking 300 am and pm. Ready to go to 400. Not easy med.
I had one very brief hallucination. I was lying in bed, opened my eyes, and there was a fly perfectly still about 1-2 inches from my face. Said to myself: That fly is not there. It disappeared in 1-2 seconds, but no mistake about it being a hallucination.
If I have any others, I hope they will be cats...hate flies.
tj
Posted by liz28 (Member # 4946) on :
I can't take the full dose, either. The first day I was on ketek, I was so excited I took 800mg all at once, passed out for a few hours filled with nightmares , then woke up with severe chest pain and shortness of breath. So now I take 400mg twice a day, and it works fine.
If you haven't tried ramping up yet on low starter doses, feel free. Ketek is a new drug, so there isn't much widespread bug resistance out there, and there's supposed to be something in the design that discourages resistance buildup.
For me, it has been a miracle drug in combating Lyme, babesia and bartonella. But I also found it could not overcome Lyme on its own. As long as I take it paired with omnicef (and ceftin might have worked just as well, for all I know), however, it has been keeping me at about 90% remission for Lyme.
![[sleepy]](graemlins/sleepy.gif)
, then woke up with severe chest pain and shortness of breath. So now I take 400mg twice a day, and it works fine.