I know that it has gone out of favor due to liver problems for some.
I am wondering if anyone else is on it now. I have done searches and read about past users.
I am herxing, I think really really bad. At least I hope that I am.
Would love to talk to someone who is using it now too. KMM
[ 06-08-2010, 03:27 PM: Message edited by: venus ]
Posted by jkmom (Member # 14004) on :
I am using it now. I have been on it for about 2 weeks so far.
I am not really herxing so far, but I did read to expect strong herxing.
Posted by venus (Member # 16991) on :
Thanks for answering. I have never not herxed on a drug. One big long herx for me. This time it seems extreme. That or it is just not agreeing with me. I am praying it gets better. Feeling really lost right now (which usually means a herx).
Posted by jkmom (Member # 14004) on :
How long have you been on it?
I hope someone comes along with more experience than me.
Posted by venus (Member # 16991) on :
I took it for a week and half. Then I had to stop all meds due to a rash. I added it back in last week. So I haven't been on it quite a week and half yet. I was feeling optimistic and then I started taking it and wham, everything went kerplewee, kerplunk.
The question is always do I have to feel bad for a long time and then I will feel better.
I have seen a number of people say they herxed for a while with it.
Posted by jkmom (Member # 14004) on :
Yes, that is the big question for my daughter, too.
I was prepared to feel bad when I started it. It could still happen.
Hopefully, it will pass soon for you.
Posted by venus (Member # 16991) on :
Thanks. I do hope so. I hope I can post - I had a huge herx and came out the other end improved.
Posted by MommaK (Member # 10376) on :
My daughter has this listed as a drug allergy now, but LLMD thought could have been a herx.
She took ketek for mild positive mycoplasma test before testing positive for lyme. The first day she had air hunger and thought she was wheezing. She had mild asthma as a young child, but no symptoms in years.
Gave her benadryl and headed to Dr office. By the time the Dr saw her, her breathing was fine. The Dr stopped the ketek.
Wonder if it's worth another try!
Posted by venus (Member # 16991) on :
Yeah, it is always hard to know - herx, reacation. How long to endure.
Posted by janet thomas (Member # 7122) on :
I took ketek (800mg/day) and IM Bicillin (1.2 mil units twice a week) for 6 months and it helped me more than anything. I had liver enzymes checked monthly and never had a problem. After 3 weeks the herx became so severe (off the wall anxiety) that I stopped for 11 days, upon the advice of my LLMD. After that I just felt better and better. But ketek causes major yeast problems. My LLMD had me on flucanazole and nystatin but after 6 months the yeast was out of control.
I know some people that ketek did not help. Each of us reacts differently.
At the start you may ask your LLMD about pulsing ketek 4 days on/3 off. Also ask about adding ceftin or omnicef to the ketek.
Posted by venus (Member # 16991) on :
Janet,
Thanks. It is really, really helpful to hear from people about their experiences. I know we are all different, but I want to believe that this is herx.
I think this must be a terrible herx. Anxiety out of control. I hope it is. I hope this will help me. I am taking it with bactrim to fight bartonella. The combo should be good. My doctor pulses everything already.
I was also on ceftin for a year and a few months. We removed it for now, but might add it back in. Right now the ketek (or whatever is going on) seems like a lot to handle. I have skipped my flagyl pulses the last two months.