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

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Author Topic: Ketek
patches10025
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Has anyone taken Ketek?

My dr. just prescribed it and I know it has some warnings including needed liver tests.

What did it do for you?

Posts: 254 | From Westchester, NY | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
we'll win
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Ketek is excellent. But as with all Lyme protocols, it must be used with other antibiotics (combination therapy). I was prescribed and used it for years. I never suffered any liver problems.

But, even though I am still being prescribed Ketek, and want to use it, I am now not using Ketek because of the following circumstances:

A few months ago I went to my pharmacy to get my new Ketek prescription filled. This pharmacy is one of the national pharmacies and it is where I had been re-filling my Ketek prescription for years. To make a long story short, my pharmacy told me it couldn't fill my prescription because the pharmaceutical was no longer manufacturing Ketek. Other pharmacies near where I live told me the same thing. I called the pharmaceutical itself which said it indeed was still manufacturing Ketek. My pharmacy finally told me that the real problem was that their wholesaler no longer was carrying Ketek.

I found a small, independent pharmacy that was willing to and did order Ketek and fill my prescription. But when I opened the bottle, I thought the pills looked slightly different than the Ketek I had taken for years. Nonetheless, I started taking the new Ketek pills. But the new Ketek pills were making me feel worse in a way. Through my doctor, I tried to but was unable to get a sample of Ketek to compare to my new Ketek prescription. The new prescription continued to make me feel bad and I decided to stop taking it. In its place I substituted a natural called Andrographis. I continued to take flagell and omniceff.

In short, if you've got good Ketek, it's excellent. Hope this helps.

Keep smiling (cause crying takes up too many tissues).

We'll Win

Posts: 107 | From maryland | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
we'll win
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Patches10025, I left off one more thing.

What Ketek did for me was help with cognitive problems. It was really good for my brain.

We'll Win

Posts: 107 | From maryland | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
patches10025
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Thanks. My LLDR wants me on Ketek, Plaquenil and Minocycline.

I Start with Ketek, get a liver test in one week then slowly add the remaining abx.

I am wondering if he should have included Flagyl to the mix.

Posts: 254 | From Westchester, NY | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
patches10025
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The BRAIN...YESSSSSS
Posts: 254 | From Westchester, NY | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
patches10025
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The BRAIN...YESSSSSS
Posts: 254 | From Westchester, NY | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
kidsgotlyme
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My DD was started on Ketek in the last couple of months. We are also now having trouble getting it filled. I am hopeful that I can find it at a local pharmacy. It is a great drug for LD from everything I've read.

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

Posts: 1470 | From Tennessee | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
kidsgotlyme
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I can't find this medication ANYWHERE!! I guess we will have to switch,

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

Posts: 1470 | From Tennessee | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
nefferdun
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I hope you can find it. After a couple months of doxy, my GP and I were going over Dr. B's protocol to decide what to try next. Dr. B said Ketek was one of the best drugs (if not the best oral) for borellia so the doctor and I both agreed to try it.

I tolerated it very well and it only took a few more months of treatment for me to get rid of the borellia. I took a few rounds of tindamax and then treated bartonella.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
kidsgotlyme
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I am trying not to get discouraged over this. I have literally called every pharmacy in a fifty mile radius of my home and not one of them can get it in.

The manufacturer did give me their customer service number to see if they can help me but I haven't gotten around to calling yet. I guess I should before giving up completely.

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

Posts: 1470 | From Tennessee | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
marypart
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My doctor says that ketek has been banned now in the US. I'm not sure if that is really true because I don't see anything about that on the internet.

--------------------
Son, 26, Dx Lyme 4/10, Babs 8/10
Had serious arthritis, all gone.
Currently on Valtrex
Daughter, 26,bullseye 7/11
arthritis in knees, cured and off all meds. .
Self:Lyme, bart, sxs gone, no longer treating.

Posts: 496 | From Washington, DC | Registered: Jul 2010  |  IP: Logged | Report this post to a Moderator
kidsgotlyme
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I called the manufacturer and they said that they ARE still manufacturing it. I am going to call the customer service department tomorrow and I will report back what I find out.

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

Posts: 1470 | From Tennessee | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
patches10025
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Well my insurance provider, United Healthcare, rejected my Ketek reimbursement, saying it was NOT an approved drug for Lyme disease. I will have my Dr. appeal the decision, but I am not optimistic.

I was really looking forward to trying it, but I cannot begin to afford the price which runs close to $20/pill!

Does anyone have any idea where one could get Ketek at reduced cost?

There are no generics out yet so the pricing is out of control.

Posts: 254 | From Westchester, NY | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
kidsgotlyme
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I looked at a Canadian pharmacy yesterday and they had a months supply for around $220. It's $1000 here.

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

Posts: 1470 | From Tennessee | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
patches10025
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These prices are so below USA prices. I wonder if it is legit?

http://www.onlinerxmedicines.com/ketek-400mg.html

Posts: 254 | From Westchester, NY | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
patches10025
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Of course shipping is $25!
Posts: 254 | From Westchester, NY | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
patches10025
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I finally got approval from my insurance company to purchase Ketek.

I had to appeal their original rejection on the grounds that my Labcorp test said I had high Mycoplasma M pneumonia titers. While they would not approve it for Lyme, they would for pneumonia.

I hope to only purchase 15 pills initially to see if I get major side effects.

It is a scary drug but it considered the best oral drug for lyme. Very effective.

Posts: 254 | From Westchester, NY | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
DanP
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Ketek cleared up the brain fog within hours of taking the first pill...it was a miracle...i haven't taken it for years and it's really too bad everything is conspiring to prevent you from getting it....
Posts: 274 | From NY | Registered: Jun 2005  |  IP: Logged | Report this post to a Moderator
faithful777
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Ketek is not in short supply. It is just some of the distributors for the large chains don't order it.

Just find a smaller pharmacy who will order it. It is not true that it is not being made. That is just what the bigger chains tell you.

--------------------
Faithful

Just sharing my experience, I am not a doctor.

Posts: 2682 | From Colorado | Registered: Oct 2009  |  IP: Logged | Report this post to a Moderator
patches10025
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Thanks, FF777.

So far Walgreens is claiming they cannot get it.

Posts: 254 | From Westchester, NY | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
kidsgotlyme
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I gave up trying to find it. I called every small pharmacy in my area and couldn't get it. We switched to Biaxin.

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

Posts: 1470 | From Tennessee | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
'Kete-tracker
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Not 'banned' but strong stuff, and has "black box warnings" as of 2007.
(From the FDA, see:
http://www.fda.gov/drugs/drugsafety/postmarketdrugsafetyinformationforpatientsandproviders/ucm107824.htm )

As is said in Dr Bs, "expect strong & prolonged Herxheimer reations". It can cause blurry or double-vision in some & can inter-react with some medications, so go over all other 'meds' you're on w/ the doc.

But the most important thing to point out here is one MUST have one's heart checked out by the doctor *before* starting on Ketek, to check what's known as the 'QT interval', as Ketek is known to lengthen it a bit.

Those patients that have a QT that's too long are not able to take telithromycin due to increased worries about "heart block". (Don't ask!)

Also, as it's tough on the liver (VERY tough for some), you need to have your liver enzyme numbers monitored while on Ketek- to check for excessive elevation.

Mine doubled in 48 hours & I felt like there was rat poison flowin' around in me, so I wan't able to stay on it for more than a week. Fuzzed me out.

But my cousin's friend, a retired professor in MD, did quite well on it! Took it every morning with a banana. Made great progress on it.
Every one's different!

Posts: 1233 | From Dover, NH | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
   

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