LymeNet Flash: ketek, need some input

This is topic ketek, need some input in forum Medical Questions at LymeNet Flash.

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Posted by KarenB (Member # 10510) on :

Hi all,

I just started on ketek and ceftin at the same time.

I've read a few posts and I will say I am a little nervous.

If you have any good or bad news about ketek, I would love to hear it.

I am also going to google it. Hearing it firsthand is always a help.

Thanks and Be well,

karen

Posted by Melanie Reber (Member # 3707) on :

Good evening Karen,

Here is a link to my last post on Ketek.
Although it has helped many, unfortunately, I was not one of them.

Hopefully the others who had successes will come along soon [Smile]

http://flash.lymenet.org:80/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=045297

My best,
Melanie

Posted by KarenB (Member # 10510) on :

Thanks Melanie,

I just got thru googling ketek and I am a little concerned.

Why does everything have be so difficult?

We all just want to get better and get our lives back

We shouldn't have to worry about all these abx and the FDA.

Sometimes I wonder if they are doing more harm then good.

Thanks for replying.

karen

Posted by micul (Member # 6314) on :

I took 800 mg once a day for 3 months without any big problems. No liver issues..all tests were fine. It did make my vision more blurry, but so have other meds, and it goes away when I stop using them. I would caution you on using it with any herbs like Samento, oil of oregano, and other antimicrobials. I have a feeling that there can be some toxic interactions with them.

Posted by trueblue (Member # 7348) on :

I took a low dose of Ketek for 2 months along with other meds. I found it much easier to tolerate than Zith or Biaxin.

My liver functions did go up and I was taken off it. It was likely from the Ketek but I also have Hep C and had just added another med to the mix that made me feel really ill.

It could be the combination was too much for me to handle.

I'm kind of bummed I liked the Ketek.

Have you liver functions monitored often and regularly so you and the doc can keep close watch.

Good luck I hope it helps!

Posted by Aniek (Member # 5374) on :

I had great improvement on Ketek. Make sure you get your liver levels tested regularly. Every two or four weeks.

Posted by cactus (Member # 7347) on :

I've taken Ketek on and off for a total of maybe 9 months, and had great improvement. No liver problems at all. I did have vision issues, which have resolved now that I'm off Ketek, so I was extremely cautious when driving (at my worst, I didn't drive at all).

Posted by islandgirl (Member # 5914) on :

Hi
I did ketek/flagyl for 4 months at the beginning of my stint with lyme. It was great....no problems.

Have been on it again for 2 months, and on and off it for the past 5 months, with tini.

I think it is a great antibiotic in combo with the flagyl/tini. Had no problems with liver function.

Good luck

Posted by KarenB (Member # 10510) on :

Thanks everyone,

I do have monthly blood tests. I am going back to my llmd on Dec 5th so I will ask if I need to be monitored more frequently.

Today will be my 5th dose of ketek and ceftin. Yesterday and today have been good days for me.

I haven't had those in awhile.

After 2 weeks on this, I am to add Mepron back in. This time only 1 tsp daily.

I'm waiting for a herx, but so far none. Good thing or bad thing, I don't know.

At least I can function right now.

I will keep you posted. Thanks for all the input.

karen

Posted by Travlr1 (Member # 9681) on :

Karen,

My wife's liver enzymes elevated on ketek and wouldn't come down for 6 weeks.

I also believe the following information is true: Ketek has caused 4 deaths(liver failure), 12 other liver failures, and 2 liver failures
that had subsuquent transplants.For a while I believe that the FDA was going to pull it, but deciding on encouraging close scrutiny of liver enzymes. [Eek!]

The real problem with this drug (even though otherwise it is a good Bb drug) is that your liver can fail after 1 dose or even if you quit it when you notice your enzymes climbing..they just never come back down. [Eek!]

I personally believe I would pass on this one and try something else. [Razz]

Travlr1

Posted by lymie tony z (Member # 5130) on :

Gee thanks Travir....

Anyway...
I had a seemingly prolonged mild herx on Ketek/metronidazol.

First month I did as directed 800mgs a day.

The next month I went a little nuts and waited for my monthly cycle and did 1600mgs for 15 days...perhaps the first dose made me looney or I fell into that...

If one works two would be better thing...I will count myself lucky cuz a few months later I heard of all the problems supposedly with the drug...

I DO NOT RECOMMEND this to anyone...but I only mention it cuz it did NOT kill my liver...

or me

but I believe a lower dose The 800 as prescribed for a longer period of time is better than what I attempted.

I waited a month and went back to the 800 dose a day.

I had some vision problems and some ache around my heart and laid around alot due to the mild constant herx reaction.

Two weeks after the Ketek I felt better but not cured...not as much chronic pain.

eight months later some of my pains are back...dang it!

zman

Posted by docjen (Member # 7510) on :

I took 2 a day for 6 months (along with Alinia) and had no problems at all with liver. I thought it made a lot of difference with the babs and lyme both. Good luck!

Posted by KarenB (Member # 10510) on :

Thanks everyone,

I did go back to my llmd and we decided to stop the ketek.

My vision was really bad with it. I have trouble with my eyes anyway but it go so much worse on the ketek.

Now he has me starting art, I'm still waiting for it to arrive in the mail. I am still on the ceftin. Feeling lousy these days, so haven't been checking in as often as I should.

I am so glad I found all of you. For a long, long time I thought I was alone. I am sad to see so many people sick with this and other co-infections.

Thanks all,

karen

Posted by lucy96734 (Member # 8372) on :

I was on Ketek either alone or with other meds for 7 months. I had my liver tested every 2 weeks and it never fluctuated more than 2 pt, always well within range.

I made huge improvements on Ketek, especially in the early months. For me it really was effective and didn't cause harm.

My LLMD said that he had 300+ patients use Ketek and 6 went off due to liver rising. He thinks it is a wonderul med for those that can use it, just moitor your liver.

It really helped me so much.