I read a LOT of good things about it from other lyme posters. But as many people here might know, if you look up Ketek, you get dire warnings.
I've read a couple of people here who got elevated liver enzymes on it. I've read people getting elevated enzymes from some other antibiotics also.
But Ketek just has scary warnings.
Then I just read, it's estimated that there were 23 cases of liver failure per 10 million prescriptions.
Now, that seems safe, no? I mean, I wish it was ENTIRELY safe....but it's hard to sort out how to balance the risk verses the potential very good benefit.
Any thoughts from those with experience with it?
Posts: 322 | From Venice, CA | Registered: Sep 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I took it ages ago for a throat infection. I couldn't handle it because I completely lost my ability to see anything. Everything was a blur. Not fun.
I was noly on it 2 days.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
I took it on and off for most of a year, and I think it was very helpful.
It gave me a huge herx - but I was so sick, and had been infected for so long that I was barely functional pre-Ketek, too. Once the major herxing passed, I felt much better.
Keep up with your bloodwork, so you know what your liver enzymes are doing.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
Ketek has been a lifesaver for me. I credit it with most of the improvements I've made (and I've been on a lot of different meds.) I took it with bicillin at first, and now I'm just on Ketek.
I'm not completely well, but my syptoms are manageable, and I can handle a full-time, crazy workload.
For me, the risk was well worth it. I was going down fast with the lyme 3 years ago.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I took it for a year and had blood work every 3 weeks..2 week for a while until test results kept coming back fine.
My doc used to have a recording about how many patients he had on ketek and how many he had to take off of it.
the ratio was very low. perhaps 3 out of hundreds
i too was concerned. but having the blood work helped.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
Ketek & IM bicillin brought me back. I had liver fnc blood work every month & never had a problem.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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DebAz
Unregistered
posted
Ketek has been very hard to take for me. Huge Herxing and completely going bedridden for each day I take it. When I stop taking it for the next week i feel better.. But if I stay off it for more than a week I slide backwards further... I am trying to take it 3 days a week but still am flat on my bed the next am after starting it and for a couple days or for as long as I am on it until I take a break. I want to try to get through it because i think it might be a good sign... thats what my doc says. But not sure how long I should try to hold on ..??? It is a tough Drug. I get tested for liver issues and have not had any problems. I am on month 4 of the drug and that is the only ABX my doc wants me on right now. I have wondered as well how people do on it and from my reading it is quite varied.
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I'm currently on Ketek and have been for almost three months now.
It's hard for me to say if it's the drug helping me since I'm also on other orals and also a couple IV abx at this time.
My doctor is running lab work weekly on me and even with all these meds (Ketek included), so far, my liver enzymes have not gone to a range he's worried about.
I do think detoxing is important no matter which meds you are on and I know I've read the horror stories on most of the meds I have been put on during the course of this treatment.
I think you just have to make sure you have a LLMD you trust and see how it effects you PERSONALLY since no two will have the same reports.
Some will call it a wonder drug (if you are one of those, you will be glad you took it). Others will call it a nightmare (if that is you, your doctor will get you off it).
Good luck and keep us posted.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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I really appreciate it.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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DebAz
Unregistered
posted
Ok What do we do in the case that Ketek feels like a nightmare but our doctor says .> Great that means it is working.. how long do we let it go where we are feeling so horrible but hoping he is right??
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posted
I've recently been dealing with this myself. LLMD prescribed Ketek and after I looked into it, I was terrified by patient stories, lawsuits, etc.
I decided to ask my PCP her opinion about the drug itself as she is very reasonable. She didn't hesitate steering me away from taking it. She said her practice doesn't prescribe that med. because of all of the possible side-effects, some which are not reversible.
Of course every drug comes with side-effects but this one has more than the majority of antibiotics. I struggled for days trying weigh the risks/benefits. I personally have decided not to take it as it is not worth the risk for me at my stage of treatment. However, a year ago I would have popped the pills without even batting an eye because I was so ill.
Tough call....
Posts: 561 | From mass | Registered: Jul 2007
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