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» LymeNet Flash » Questions and Discussion » Medical Questions » Ketek experiences?

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Author Topic: Ketek experiences?
Aniek
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Can anybody share their experiences on Ketek? I'm starting tomorrow. The pharmacist seemed uneasy that I was taking it for more than 5 days.

Also, did anybody have a Ketek herx that affected the respiratory system?


Posts: 4711 | From Washington, DC | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
PinchotGail
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I'm anxious to see responses to your post as I've just started Ketek this past Tuesday. I take 2 400mg pills once a day. This is also the only antibiotic I take now. My pharmacist did not say a thing........

The 2nd day I noticed my heart beat speeding up for about an hour within 1-2 hours after taking. Today I did not notice an increase in heart rate.......My sleep is not good (yet again!) since I started taking it either. Sleep was good while on zith, mepron & ceftin as long as I rotated Ambien, & Elavil.

Feel free to email me and we can continue to compare our Ketek expereince!

Gail


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nan
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I noticed the same thing Gail did with the fluttering heartbeat which started within an hour of taking it.

After three weeks I gave it up partly because of the heart thing and partly because I felt much better previously when taking two omnicef in the morning and 2 biaxin at night.

I have heard others say they've done very well on it...and hope you will, too!

Like Zithromax, Ketek is prescribed for 5 days and repeated again for 5 days if symptoms don't resolve. Pharmacists get thrown when a drug gets prescribed beyond the recommended dose!

You can check drug information here: www.costco.com
Click on pharmacy.
nan

[This message has been edited by nan (edited 28 October 2004).]


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solsearcher
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My doctor has me on Ketek right now, five days a week through November. I've been on it for three weeks, and I haven't felt a thing. No herx. No improvement of any symptoms. I keep telling my doctor that my symptoms are mostly in my head, but he hasn't reasoned yet that I need something that will penetrate the blood brain barrier. I'll express my disapproval at my next appointment.

Scott


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gracezren
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Had big herx. Was taking along with Minocin. Got extremely woozy and aching all over. Then my stomach was in severe distress - which left me incapacitated. Dr. took me off until feeling better. Feel so much better of antibiotics am afraid to go back on.
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islandgirl
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Hi
I was on ketek with flaygl for 4 months. Just came off it this week for a break. I will be on ceftin and tini for a while but would return to ketek if things don't seem as good.

I did not find it easy...herxed right off the bat for a full week, and had a hard time maybe 3 days out of each week throughout.

But, my brain fog cleared and I could think again. I was willing to put up with the discomfort because I knew it was doing something positive. My symptoms are mostly all neuro and my Canadian doctor is impressed with it.

Good luck to you. I was disappointed to be off it but I also think the body needs a change as well. I was getting (again) bad headaches, as if a big dog was biting the back of my head on either side.) Perhaps I plateaued. I notice many drs. in the states alternate drugs quite routinely.

Just wanted to write and say that yes, ketek is a hard drug, but seems to be effective. I've used it continually for 4 months and am still here. (The flaygl I won't miss!)

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


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liz28
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Started on ketek with omnicef, low dose mino, plaquenil seven weeks ago. The first two weeks, I had a huge herx that felt like a constant cold. The next four weeks or so, I felt so much better that I began looking for a low level job in my field--I'm in grad school for it, but was afraid to take a job and relapse--and will start work this weekend.

However, two weeks ago, my liver enzymes started going up. I went off all abx except ketek and a little mino, and even though it was still working on my chest, I had the worst neuro relapse ever. I just added the omnicef back on, but it can't work fast enough for me.

I am VERY worried, as my school is fast-tracking me and I don't want to have a neurological meltdown while meeting with the best in the business. Also, I've been disabled for four years now, and even with the improvement ketek has offered, it seems that something else, something as yet unidentified, is afoot. I'm so glad to have a new job, so I can go to the doctor more and get a co-infection test done.

Meanwhile, the ketek should work. If you get the heart flutter, try taking 400mg twice a day, instead of all at once. Also, try taking it with a backup abx, like omnicef. And please keep us posted!


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robi
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Hi,
I have been on Ketek/Mepron about 2 weeks. I am so up and down I can't really tell if it is helping. I often feel like crap.

Don't know if it is the Mepron or the Ketek thats making me feel badly. My hands and feet hurt on and off but I have HLA dr 4 gene so I guess they may always hurt.

Hard for me to tell what is working and what is not. I don't even know the difference between a herx and just pain from the disease...does anyone really know?

I am tired and depressed often.

Sorry I couldn't help more...

If anyone out there wants to email me with suggestions please do so .......... sometimes i wanna just quit everything.


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PinchotGail
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Good info. here....Anybody else?

up~

Gail


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Mathias
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I've been on Ketek for close to 3 months now. It has helped me tremendously. I highly recommend it.

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robi
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My Total Bilirubin is higher than normal range (liver test). Started Ketek about 2 and a half weeks ago......not sure if it is due to ketek or mepron.
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suej
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Hi Aniek,
Dr B prescribed Ketek for me, I'm starting tomorrow.(You're a day ahead of me!)

He gave me a printout about Ketek, it said that:

1)It is the most effective antibiotic ever studied against lyme.

2)It has been engineered to prevent drug resistance.

3)It has almost no negative impact on intestinal normal bacteria, hopefully minimizing diarrhea.

4)It is stable in an acidic enviornment where chronic Borrelia hide.

5)It is also somewhat effective for Bartonella and Babesia

He told me that I can take the two 400mg tabs at one time or split it up and take it twice a day. It can be taken with or without food.

He said you can take it at the same time of day along with your other med regimen (ie:you won't have to wait 2 hrs before taking supplements).

He did warn me about the possibility of a strong herx. He said it could last a month.

Evidently this drug can have major interactions with other drugs. You have to make sure you tell any other Drs that you're on it before you start anything new.

He even suggested that I keep the printout with me at all times.

Sounds like a miracle drug!

I hope you keep us posted on how you are doing on it. I will do the same.

Good luck
Sue


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Aniek
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Thanks for all the responses!

So far, so good. But this is only my second day. I'm having upper back and arm pain today, but I think it's just a coincidence. I spent 8 hours phone banking for the election yesterday, and even though I was using a headset instead of holding the phone, I think that's the culprit.

In addition to the Ketek, I'm on Augmentin and Plaquenil for the Lyme and other infections. My LLMD also has me on Acyclovir to keep some viruses at bay and Diflucan because of the yeast. My pain specialist has me on Flexeril for muscle pain. I've checked, and none of these are on the interaction list...although I noticed some antifungals are.

I wish you all luck with the Ketek. I'm sure my pharmacist also had a reaction to the 30 day supply of Diflucan (which cost my insurance company about $400!)


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TWO BOYS
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quote:
Originally posted by Aniek:
Can anybody share their experiences on Ketek? I'm starting tomorrow. The pharmacist seemed uneasy that I was taking it for more than 5 days.

Also, did anybody have a Ketek herx that affected the respiratory system?


IN RESONSE TO KETEK,
I WAS ON IT FOR A WEEK. I DEVELOPED SEVERE DIZZINESS AND STOPPED IT TO SEE IF IT WOULD CALM DOWN. WELL, IT DIDN'T. I HAD STARTED A FEW NEW MEDICATIONS THAT SAME DAY, INCLUDING NORTRYPTOLINE, BUT MY DR SUGGESTED GOING OFF THE ANTIBIOTIC SINCE I'M STARTING IV NEXT WEEK. STILL DIZZY 4 DAYS LATER, AND VERY DEPRESSED. CAN'T MOVE HEAD OR EYES WITHOUT DIZZINESS. THE KETEK MAY OR MAY NOT BE RELATED, AND MY DR, WHO HAS CHRONIC LYME, DID READ POSITIVE INFO @ KETEK.
GOOD LUCK WITH WHATEVER YOU CHOOSE TO DO. YOU MAY JUST HAVE TO SEE HOW IT WORKS FOR YOU. WE'RE ALL SO DIFFERENT!!!
LET US KNOW...
TWO BOYS


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