Experience with Ketek

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 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?

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.

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)

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.