LymeNet Flash: Ketek-OUT OF THE DARKNESS after three yrs!

This is topic Ketek-OUT OF THE DARKNESS after three yrs! in forum Medical Questions at LymeNet Flash.

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Posted by Green Darkness (Member # 985) on :

Wow! Hope this lasts; been on Ketek and Ceftin now for five weeks; heard others say they had some luck with Ketek. So far so good. I have been able to drive a little more without the motion sickness. It feels like I've been lifted out of the darkness. Been cave dwelling for years now, it seems. Had a little rough herxing in beginning, but those others on this Ketek--hope you will also wait it out; feel it is worth the waiting. Can't explain how much better it feels not to have panic attacks, etc. Eyes could be better as I am still pretty photophobic, but I am not complaining.
Hope this helps others on Ketek.

Posted by artbyjessie on :

Great news......
I just started Ketek a few days ago and my wedding is next week so I am hoping it gets me to where i want to be!

Posted by winsomme (Member # 5623) on :

green darkness

that's great news.

if you don't mind me asking, what abx were you on previous to starting ketek?

were you already on ceftin, and just added ketek, or did you begin ceftin and ketek at the same time?

thanks
bill

Posted by islandgirl (Member # 5914) on :

Hi Green,

That was my experience with Ketek exactly. The beginning was rough but...

I Really noticed a MAJOR difference at 3 months. My advice to all, try to stay the course. I think this is going to be a winner for us all. We are hearing really good things from many people.

I am starting to have problems with the flaygl I take with Ketek, and will likely pulse it or change to tinidazole. The combination sure did work for me tho, and I have no complaints. I actually have some sort of brain now!

Islandgirl

Posted by liz28 on :

Hey, Green, this is so great to hear.

And thank you for sharing your good news before you got so much better that you stopped coming to this Board. There aren't many Ketek users yet, and your input is much appreciated.

I cautiously started lifting weights two days ago, after two weeks on Ketek, omnicef and minocycline--the Lyme tried to relapse, I smacked it with Ketek and a minocycline chaser, and it went away completely in about six hours. TOO much fun!

Posted by pab (Member # 904) on :

Green Darkness,

Thanks for sharing your great news!

I'm interested in Ketek for Jake and Jordan.

I have a couple questions:

What dose do you take?
What is the cost?

Thanks!

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Posted by pab (Member # 904) on :

Green Darkness,

Thanks for sharing your great news!

I'm interested in Ketek for Jake and Jordan.

I have a couple questions:

What dose do you take?
What is the cost?

Thanks!

------------------

Posted by nan (Member # 63) on :

Thanks for posting this...good news,
I just took two ketek...my first dose.
Had to quit the Vioxx for pain due to the recall. Am hopeful this stuff will work!

Posted by nan (Member # 63) on :

Thanks for posting this...good news!
I just took two ketek...my first dose.
Had to quit the Vioxx for pain due to the recall. Am hopeful this stuff will work!

Am taking it with Omnicef and malarone.

Posted by cootiegirl (Member # 3216) on :

Hi Everyone.
I haven't been able to get on the board for several weeks so I am trying to catch up. My son was put on Ketek 3 weeks ago and he had his first herx. The doc is pretty positive about this med for his case, and I am glad to hear others are doing well on it.

I asked my llmd about using it but he doesn't think it is right for me. So for now, it's flagyl....I plateaued on tini and biaxin....drat! I was doing really well on it for almost 5 months.
cootiegirl
cootiegirl

Posted by lla2 (Member # 2364) on :

It hasn't been medically cleared by the fda for use in children yet...I just went to a whole seminar on it at my school nurse's convention....

so be very careful..

Lisa

Posted by lla2 (Member # 2364) on :

It hasn't been medically cleared by the fda for use in children yet...I just went to a whole seminar on it at my school nurse's convention....

so be very careful..

Lisa

Posted by nan (Member # 63) on :

Hi Peggy,

I know Dr. Jones is prescribing it.

I read that Ketek is $10 a pill...adults 2 pills per day. I had a $20 copay for one month for 60 pills.

I guess it would depend on your insurance plan.

nan

Posted by troutscout (Member # 3121) on :

My Local MD...who has become very Lyme friendly...said this about Ketek;

It interatcs with so many other meds out there..especially stains...that he said unless you are under 20 and male..you shouldn't take it.

He then added the blurred vision thing.

Now...I haven't Dr C yet, but....

I am gearing up for a tooth extraction ...then going off of Mepron and Zithro and doing the Benicar Protocol.

Trout

Posted by cootiegirl (Member # 3216) on :

Well Lisa to be honest, I don't place much stock in what the FDA says....do they really have a grip on lyme? What about the whole Vioxx debacle? I look at some of the strange and unsual things people take upon themselves here and try for lyme and this pales in comparision. My son is a patient of Dr. J's and I have great confidence in him.
cootiegirl

Posted by artbyjessie on :

I have been on this for 5 days and I must say despite it making me dizzy, I do feel a LOT better. I haven't had a headache since Monday!!!

However, I also started Mepron at the same time and I don't know which it is that is having the positive effect.

Posted by Coastlyme BC (Member # 6312) on :

quote:
Originally posted by Green Darkness:
Wow! Hope this lasts; been on Ketek and Ceftin now for five weeks; heard others say they had some luck with Ketek. So far so good. I have been able to drive a little more without the motion sickness. It feels like I've been lifted out of the darkness. Been cave dwelling for years now, it seems. Had a little rough herxing in beginning, but those others on this Ketek--hope you will also wait it out; feel it is worth the waiting. Can't explain how much better it feels not to have panic attacks, etc. Eyes could be better as I am still pretty photophobic, but I am not complaining.
Hope this helps others on Ketek.

Hi There, just reg'd. Just spent the last 3 months in the basement with all windows

blocked.Was on Biaxin 3 mos. My Dr switched me to Ketek 1 month ago

and I am almost feeling normal.Unbelievable!

Have been on Doxy/Flagyl 6 months

then 1 yr off then

Amoxy/Flagyl 6 months then 1 1/2 yr off

then Biaxin/Flagyl 3 months - Ketek/Flagyl so far 1 month.

Feel very hopeful that this may be the answer but have had recurrences since I got infected June 2000.

My Dr said all of his other patients on Ketek are showing miraculous results.

Will monitor this site and post updates.

[This message has been edited by Coastlyme BC (edited 04 October 2004).]

Posted by WildCondor on :

ketek seems great so far...brain is clearing!! yeah!

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Lyme Disease Help
http://www.wildcondor.com

Posted by winsomme (Member # 5623) on :

wild

what dose ketek are you on? and are you currently taking any other abx along with ketek?

thanks
bill

Posted by lymeHerx001 (Member # 6215) on :

I herxed a little on zith but i got the leaky burning colon which was intollerable,,

THen doxy=nothing

After that the biaxin

HUGE HERX,, 5-6 months later some improvement,

My doc wants to add another soon but he says that the ketek is in the same class as biaxin so i cant do both,,

But I would like to try and see if I herx on it.

Posted by Coastlyme BC (Member # 6312) on :

Oops sorry!Understandable. Edit done. I just feel sorry for anybody who has Lyme here and can't find help other than Dr.s who say it doesn't exist here.

Posted by WildCondor on :

800 mg/day and nothing else! Stuff is great!

------------------
Lyme Disease Help
http://www.wildcondor.com

Posted by cootiegirl (Member # 3216) on :

Condor,
How long have you been on Ketek and when did you notice changes for you? My son has been on it a month this week - had a herx last week, so it's starting to do something.....He's at the same dose - 800mg a day and just the Ketek. Always good to hear how these meds are working for others...
cootiegirl

Posted by liz28 on :

I've been on ketek three weeks, 800mg/day, and it's completely turned my Lyme around. Even though my energy has tripled, and I've started exercising again, I'm quite impatient at not being completely cured yet, and at having relapses at all.

Posted by lhm312 on :

quote:
Originally posted by liz28:
I've been on ketek three weeks, 800mg/day, and it's completely turned my Lyme around. Even though my energy has tripled, and I've started exercising again, I'm quite impatient at not being completely cured yet, and at having relapses at all.

Liz28, my LLMD wants me to get off the Ceftin/Zith I have been on forever, and switch to Ketek. I have been on this combo so long that I am scared to death to start something new, although I know that it's the answer. You are so positive about Ketek, I was wondering how you are doing now and if you are taking it alone.

I have read all the posts, all about the herxes, and am now sitting staring at the pills instead of taking one to start.

Also, is there anything we shouldn't be taking while on Ketek? I am on lots of supplements, including Cat's Claw from my alternative dr.

Thanks so much and Godbless.