Experience with Ketek

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LymeBasics
Regular Member


Date Joined Sep 2017
Total Posts : 38
   Posted 12/23/2017 5:43 AM (GMT -6)   
Hello forum,

I've been treated for Lyme and Bartonella in the past. Lyme treatment was succesfull but culture came back positive for Bartonella. They did an antibiotic susceptibility test and it became resistant to azithro/clarithro.

Telithromycine it is still susceptible for. So I read about this drug and am not to worried about the liver-toxicity since it never happened to anyone on this forum. I see some doctors in the US use it and find it is tolerated well.

I didn't see any dosages that are used in Lyme/Bart patients. General dosage is 800mg daily.

Are there people with experience on this drug, how did you tolerate it, what dosage was prescribed?

Thanks.
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LymeSick 🌟
Regular Member


Date Joined Aug 2017
Total Posts : 234
   Posted 12/23/2017 7:33 AM (GMT -6)   
Please don't take high dosages of Ketek, it's not safe.

There is a black box warning on it, 4 people have actually died from taking it.

I would stick with the recommended dosage, as prescribed by your doctor.

And please!, get liver blood testing done regularly.

LymeBasics
Regular Member


Date Joined Sep 2017
Total Posts : 38
   Posted 12/23/2017 10:03 AM (GMT -6)   
4 people on this forum?
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Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 12/23/2017 11:51 AM (GMT -6)   
LymeBasics said...
4 people on this forum?


Not sure what that statement means?
EDIT - okay I see what 4 people lymebasics is referring to deaths from Ketek.




"I didn't see any dosages that are used in Lyme/Bart patients."

Ketek isn't a commonly prescribed antibiotic for lyme and co's.

Why not take the ones that are?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 12/23/2017 12:52:37 PM (GMT-7)


LymeSick 🌟
Regular Member


Date Joined Aug 2017
Total Posts : 234
   Posted 12/23/2017 1:49 PM (GMT -6)   
LymeBasics not on this forum as far as I'm aware.

I meant in general.

You can read more about it here:

www.nejm.org/doi/full/10.1056/NEJMp078032


In February 2005, 7 months after the drug was introduced to the U.S. market, the first death from Ketek-associated liver failure............

[....]

........ In January 2006, FDA management learned of the impending electronic report of a cluster of three cases of Ketek-associated acute liver failure at a single medical center, one of them the fatal case that had been reported almost a year earlier.


[.....]

By this time, 23 cases of acute severe liver injury and 12 cases of acute liver failure, 4 of them fatal, had been linked to Ketek.

insomniaaa
Regular Member


Date Joined Apr 2017
Total Posts : 150
   Posted 12/23/2017 2:25 PM (GMT -6)   
How about taking bactrim + rifampicin or maybe some minocycline to decimate those bartonellae?
Does that sound like a plan?

LymeBasics
Regular Member


Date Joined Sep 2017
Total Posts : 38
   Posted 12/23/2017 5:06 PM (GMT -6)   
Okay I will need to clarify:

I got cat scratch disease in 2009. Recovered partially in 2010.

In 2012 got Lyme disease. Took 2 years to diagnose. Bartonella relapsed during Lyme infection.

Lyme was cured. Bartonella still chronic.

Last month laboratory confirmed my Bartonella infection by culture and performed an antibiotic susceptibility assay. According to lab results it is resistant for:

tetracycline
doxycycline
minocycline
erythromycine
azithromycine
clarithromycine
rifampin
trimethoprim
ceftriaxon
cefuroxime axetil
amoxicillin

susceptible for:
ciprofloxacine
levofloxacine
moxifloxacine
telithromycine
tigecycline
rifabutin
gentamycin
tobramycin
vancomycin
meropenem

Only vancomycin and meropenem will not work in the body because it works not intracellularly.
tigecycline, tobramycine and tigecycline are only available as IV and they are to expensive.
I cannot tolerate rifampin/rifabutin. They cause hepatitis in me.

So the only options are telithromycin(ketek) and/or fluoroquinolones. But I had a neurotoxic reaction to ciprofloxacin so I don't want to try that.

So I am not really having much options other than telithromycine monotherapy.

Herbs never helped me anything. Buhner, Cowden all bullcrap therapies for my particular case.
Also Ozone didn't do anything for me.

The Bartonella became resistant because my physician thought he could pulse antibiotics without consequence and at the time I didn't understand 'basics' of infectious disease. Now I do. The doctor made my treatable condition almost impossible to treat by using unproven pulse regimen for a Lyme infection that was much more easy to cure than my chronic Bartonella infection.
lyme-basics.com owner of Lyme-basics.com

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 12/23/2017 5:15 PM (GMT -6)   
How accurate is the susceptibility test? If it is a good test...wondering why LLMD's don't do it?


You can pulse antibiotics for Bartonella...you don't do one at a time though, its' done in combinations.

Dr. J. has success with treating all the infections with a pulsed protocol.

Sorry I can't help with the Ketek dosage - as I haven't known anyone that's taken it for bartonella/lyme...and haven't seen it in any protocols.
Hopefully someone else will know.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

LymeBasics
Regular Member


Date Joined Sep 2017
Total Posts : 38
   Posted 12/23/2017 6:10 PM (GMT -6)   
It is very accurate. They don't do it because there is only one commercial lab in the US doing culture for Bartonella and without an isolate you can culture, you cannot perform susceptibility testing. It also takes a lot of time.

I worked carefully together with a befriended microbiologist who sees it as a fun project to learn new things. We use his laboratory and I pay for all the resources, culture medium etc needed to do it correctly.

It is not easy, needs a lot of expertise and is expensive.

But it fits with what I experience too:

I responded very positively to tetracyclines and macrolides in the past. But my first doctor prescribed them 3 weeks on, 1 week off.

After a while the antibiotics stopped working and I slipped back. Persistence of Lyme was proven by PCR. Treatment with IV antibiotics helped and never a Lyme symptom returned. PCR never came back positive again. No indication of treatment failure for Lyme.

But retreatment with tetracyclines and macrolides didn't result in improvement of relapsed symptoms during IV rocephin.

Culture confirmed Bartonella. ciprofloxacine worked in improving the symptoms that didn't respond to tetracyclines or macrolides anymore. We decided to check for resistance, we confirmed resistance. We understood this must have happened from pulse treatments.

Combined with the knowledge that co-infections such as Bartonella become rapidly resistant and the earlier strongly positive response to treatment with these antibiotics suggests resistance developed from too short and pulsed treatments.

Treatment was always with double antibiotics.

From the literature I know combining a drug does not always stop the bacteria from developing resistance. Especially when you give the infection time to regrow by stopping therapy to early multiple times. With Borrelia, in vitro this is different, but with co-infections this is much different and they can develop resistance. Some of them rapidly.

What ILADS doctors think is persistance of Borrelia, might as well be, in more cases, resistance to the used drugs because they use rotating antibiotics and don't have a clue if the bacteria are susceptible to the used drugs.

They actually should use culture and susceptibility testing more often for infections like Bartonella to confirm the chosen antibiotics are actually effective.

Post Edited (LymeBasics) : 12/23/2017 5:17:35 PM (GMT-7)


insomniaaa
Regular Member


Date Joined Apr 2017
Total Posts : 150
   Posted 1/6/2018 5:18 PM (GMT -6)   
Where can I sign up for the bartonella culture and antibiotic susceptibility test?

Can you please ask your microbiologist buddy how exactly he cultures the bartonella? What technique, what medium etc. Did he use a blood sample?

Post Edited (insomniaaa) : 1/7/2018 12:50:17 PM (GMT-7)


LymeBasics
Regular Member


Date Joined Sep 2017
Total Posts : 38
   Posted 1/17/2018 4:52 PM (GMT -6)   
They used a agar plate with 10% horse blood or liquid Schaedler medium (?) to culture the Bartonella. We took 3 serial blood draws.

2 weeks for culturing and pcr tests for Bartonella. How it was sequenced, this is beyond my knowledge.

The susceptibility testing was first E-test which we found to insensitive. Then he used micro broth dilution assay.

This was all copied by the microbiologist from the emerging literature about testing for these difficult to culture bacteria. When you are able to isolate and grow the organism, you can do susceptibility testing. How long this took, I don't know.
lyme-basics.com owner of Lyme-basics.com

Rikky1
Veteran Member


Date Joined Jun 2015
Total Posts : 2860
   Posted 1/17/2018 6:49 PM (GMT -6)   
interesting stuff lymebasics thanks for sharing and totally agree. susceptibility testing sounds like a great tool to have at your fingertips to see if what drugs you are taking actually do anything to the bacteria you know you have. who knows how many folks are taking drugs over long periods of time that the pathogens are just laughing at.

i know cultures for say bartonella are done in the USA (Galaxy Labs?) but not by many places and it takes a long time and is pricey but primarily used to confirm if you have this particular pathogen.

i knew someone that did ketek for 8 months to clear their lyme maybe 8 years ago. not sure how much but all i know is it worked for them.
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