posted
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
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posted
The BRAIN...YESSSSSS
Posts: 254 | From Westchester, NY | Registered: Jun 2009
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
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
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kidsgotlyme
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Member # 23691
posted
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
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nefferdun
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Member # 20157
posted
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
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kidsgotlyme
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Member # 23691
posted
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
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posted
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
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kidsgotlyme
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Member # 23691
posted
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
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posted
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
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kidsgotlyme
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Member # 23691
posted
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
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posted
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
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posted
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: 277 | From NY | Registered: Jun 2005
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So far Walgreens is claiming they cannot get it.
Posts: 254 | From Westchester, NY | Registered: Jun 2009
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kidsgotlyme
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posted
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
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'Kete-tracker
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Member # 17189
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
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