Would love to hear your experiences with this drug.
I have been on it for about a month. I hit my monthly herx time and wow! It is pretty bad right now.
I also am on Tindamax and Ceftin (just started the Ceftin about a month ago too), plus some Buhner herbs (not full protocol...about 50% there).
Is it possible that I could be getting worse while on all of this (meaning could the illness possibly be progressing?)or is it most likely a herx?
I would assume herx, but I've been treating lyme for almost 3 years on heavy doses of abx, so it's still amazing to me that I can herx this much after all of that. My shoulder is locking back up... haven't felt that one in a long time.
I am aware of the liver(and death) issues, and I am detoxing myself like crazy, but just wanted to hear of others' actual experiences with this med, good or bad.
Thanks!! V
Posted by blinkie (Member # 14470) on :
I've been on and off of it. Going to start it again in about 2 weeks. Along with lariam, flagyl and bactrim DS.
Does ketek give you insomnia?
Posted by 'Kete-tracker (Member # 17189) on :
Don't think you could ever get disease "progression" with a protocol as serious as That.
Ketek AND Ceftin? I'm amazed you haven't had some serious G.I. &/or fungal issues yet. More power to ya.
Make sure you're pounding the probiotics! (Away from the abx, of course.) And I ASSUME you've had your heart rythm [Qt interval] measured and are having your liver enzymes checked atLEAST every month.
I'm not on Ketek anymore. Was "working" well against the borrelia (Herx City), but it was too tough on my body/ brain. Couldn't sleep a the full Rx'ed level.
Posted by VB (Member # 16824) on :
Thanks guys! Yes, I get my liver enzymes checked every other week, and I had my heart checked a while back.
I have noticed a little more trouble with sleep than usual... mostly just waking up in the middle of the night, but more just twitching and frozen shoulder and hip, plus muscle cramps. Stuff I haven't had for a long time (well, twitching I always have).
I'm actually stopping the Ketek Monday to go back on IV, so hopefully that will be a bit of a break, lol!
Posted by Remember to Smile (Member # 25481) on :
Glad I'm not using Ketek. Be careful!
My successful ILADS-active LLMD no longer prescribes Ketek for anyone. Said it's too dangerous (Liver toxicity, liver failure, and deaths have been recorded!) LLMDs have other effective tx options which are safer.
It's vital that our LLMDs keep up with ALL the latest info on CLD treatments. Hard to do, but those active in ILADS (attending conferences, conferring with each other) offer patients more success in a shorter period of time than Lyme-friendly doctors givin' it a shot.
Liver support may be of utmost importance to you now, as well as the constant addition of friendly pre- and probiotics as noted above.
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