LymeNet Flash: Ketek and Omnicef

Posted by liz28 on :

Can't write long, but these are two of my three maintenance abx for Lyme. I'm also dealing with co-infections.

If these work for you (and they are the only abx, along with flagyl, that have worked long term for me), it should take a month or two to really start feeling the effects. The first two or three weeks could be harsh, so hang tough.

I have to take ketek 400mg/2x day, because I'm short and can't take a full blast dose. You are probably taller--everyone is--but you might want to build up to the 800mg dose over a few days.

The ketek caused a two week herx in the form of an endless cold. The omnicef made my hormones go haywire, and I spent a week eating pickles with chocolate mousse, cheddar cheese hunks, and salted cashews. Yuck, uck, it's so gross even to write.

Posted by arg82 (Member # 161) on :

Thanks for the reply. I should have put the dosages. The Ketek is 400mg twice a day and the Omnicef is 300mg twice a day. I'm starting the Omnicef first (want to go slowly into them and my pharmacy didn't have enough Ketek to fill the Rx so that made the choice pretty easy of which to start first!). I'm starting that tomorrow and I'll see how that goes. If I seem okay with it, I'll add the Ketek in about a week, but I'm going to take it slow to hopefully keep the side effects minimal (yeah, like that ever actually happens).

Other experiences and input would be great!

--Annie

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Posted by arg82 (Member # 161) on :

Anyone else have any experience with these abx?

--Annie

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Posted by minoucat (Member # 5175) on :

Yeah. They're great.

Started the omnicef first. I'm taller than Liz28 (who isn't?) so I could do the full dose. The omnicef hit me pretty hard the first 2 weeks, mainly intense fatigue, brainfog, achiness, and crankiness (but about that crankiness -- who can tell anymore? Maybe that's just how I am). Then I felt pretty good.

Well, we can't have than, can we. So I started on Ketek, again at full dosage. I didn't feel bad on Ketek -- initially, a small downturn and brainfog, but nothing truly horrid.

My stomach handled them both fine. Take them with food--you don't have to, but it's easier on your stomach.

Stopped the Omnicef, and was on bicillin and Ketek for a month. Felt pretty good.

Seeing as how I felt so fine, I started on tinidizole. Don't ask....

[This message has been edited by minoucat (edited 07 April 2005).]

Posted by arg82 (Member # 161) on :

Hi Everyone,

I started the Onmicef today, just one dose of 300mg because I'm expecting that my stomach will give me troubles and don't want to overload it too much. Well, after just the one dose, I spent most of the day running for the bathroom. Anyone else experience this unpleasant side effect? I'm taking a high quality pro-biotic about 2 hours after the Omnicef. Just don't like this side effect and I don't think I'll last long if it keeps up. I'll see how it goes tomorrow with one dose again.

--Annie

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Posted by chainsaw joseph (Member # 6611) on :

The last thing dr L gave me was omnicef.I know its hard but if you are really strict about no sugars,even naturall,no yeasts,it really helps me.If I start eating sugars I get in trouble,if Im strict,no problem(no gatorade its loaded with sugar.Whats up with Winnie now,can he just hang around?

Posted by arg82 (Member # 161) on :

Hi Joe,

I'm already pretty good about avoiding sugars. I do eat fruit, though, because I just need it in my diet. I'm about 99% sure that my "problems" are from the Omnicef because they started after my first dose of it yesterday morning. I'm hoping that maybe it will let up after I've been on it a little while, but I'm not sure.

Winnie is just hanging out. (For those of you who don't know, Winnie is my port-a-cath - "Winnie the Port".) I'm still trying to get daily IV saline infusions set up (for newly diagnosed neurocardiogenic syncope - NCS) so if I get those approved (my insurance is not being cooperative about it) Winnie will get to come out of hibernation.

--Annie

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Posted by RJPII (Member # 5876) on :

Hi - Just wanted to say thanks for this thread! I have tried any of these meds. except Tinidazole and I am seeing my LLMD today. I hope to try them soon as well.

Annie - I will let you know how I do, if I start.

Minoucat - You were on Bicillin and Ketek? That sounds like an intriguing combo. to say the least. You sound like you have an LLMD who is ahead of the curve. What state are you from?

Thx

Posted by minoucat (Member # 5175) on :

RJ--I live in Washington state, but drive 15 hours one way to see my LLMD in California (my parents are on the way, thank heavens). He's excellent. I've been to a lot of docs and have had 4 retire or die, so I consider myself a docconnoisseur.

The Ketek was added 2 months ago after a year of bicillin and coinfection tx; I'm hoping it, and the tinidozole, are the final final final thing I have to do. I've gotten a lot better.

Annie, I'm so sorry that the omnicef was so hard on you. I've had big gut problems (I mean the problems were big) in the past, but by the time I started the omnicef my intestinal system was completely healed. And I'm not chemically sensitive at all, so far. Hope you're doing better soon.

Posted by arg82 (Member # 161) on :

Hi,

Thanks guys. I did two days of 300mg of Omnicef each day and my GI problems were just so bad that I'm taking the weekend off of it. I'll possibly give it another shot on Monday and see if I have the same problem. If I continue to have this problem, I'll just stop the Omnicef and give the Ketek a try. My GI problems are not pleasant to deal with so I really don't feel comfortable trying to stick it out and see if they get better.

Glad you guys have had positive experiences with these meds!

--Annie

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