Any experience with Ketek/telithromycin?

Hi everybody,

Saw my LLMD yesterday, and the news is (knock on wood) encouraging.  The babesiosis seems to be gone, now it's a mopping up operation on the Lyme.  The problems I was having on flagyl seems to have been simple gastro irritation, but it was quite effective on the Lyme:  the brain fog is largely GONE.

Does anyone have experience with Ketek (generic: telithromycin)?  When it was first introduced a few years ago, the drug company apparently didn't do appropriate drug testing prior to FDA review and approval, and it turned out that Ketek can have sudden and very bad effects on liver function...'very bad' as in, liver failure and death...on a few taking it.

A little nervous here, looking for any patients'-view-data on the drug.  Thanks, everyone.

[gorbybelle]

GREAT NEWS. -  {knock on more wood}

is there nothing else for on-going treatment other than Ketek - I know nothing about it but it sounds a bit too risky.

[Sunshine5664]

It makes me a little nervious too!!!

[SOONERMOM]

Because of my recent liver enzyme issues, I have been talking to someone who had those *major*  issues with Ketek.  (I didn't even think it was available in the USA now??)

Anyway, she ended up with very high liver enzymes and a liver biopsy.   I know she had to stop all meds for 5 months.   She had a hepatologist tell her that she needed a liver transplant.  I am sure she would discuss all this with you...if you are interested, let me know.

The good news is that she decided not to get the transplant...because, hello..taking immunosuppressant drugs forever and lyme do not mix...and her liver did heal on its own eventually.

[patsy10]

My friend has been on it for over 2 years and has had no problems.  I believe her liver enzymes are checked every week or every other week.

[Jena906]

WOW, I would look into the Ketek  a bit more.  I work in the medical field, I have heard of the drug but I  have not seen or heard of the side affects.  I will check the nursing book info on it if I get time at work tomorrow for you.  I was wondering what meds you have been on and for how long?  Has your blood tests all been good?  I am now on Ceftin 1000mg twice daily and doxy 400mg twice daily. I hope this works for the brain fog.

[JackieCalifornia]

Thanks, everybody -- I appreciate the input.

I think I may have inadvertently caused the gut irritation by taking magensium oxide supplements ... and I'm going to see a gastroenterologist next week just to see if he agrees and then maybe I can go back on the Flagyl, 'cause it was REALLY working for me.  (I do dread having the "I have Lyme ..." conversation with the gastro guy....you know how the drs can turn on you as though you just said "I eat fat juicy worms for breakfast, and they are really tasty.")

I read the drug literature on Ketek, and that's where I got the data on liver problems.  My doc isn't worried, apparently, since he gave me orders for blood work [which would show liver problems] for *3 months* from now.  There is a website called rxlist (dot) com that gives patient information on drugs as well as a section 'for professionals', which gives the real detailed scoop, and that's where I read about the messed up initial drug-approval testing (which seems to have now been rectified) and also about the liver problems.  It's rare, but who wants to go there; I'm sorry to hear about SoonerMom's friend.  Apparently the liver damage can begin almost immediately and get really bad, really fast ... I don't like that fall-off-a-cliff aspect.

Jena asks above what else I've been on:

--Mepron and azithromycin [mostly to attack the babesia] -- 4 months

--biaxin and Omnicef/cefdinir -- 5 months (had a reaction to the biaxin -- got edema; took a 2 month drug holiday and started getting Lyme and babesia symptoms again)

--Flagyl and azithromycin -- 4 months (got the gut irritation really bad -- bloated, painful; I assumed it was the Flagyl, but am thinking now it might be the cheap magnesium supplements because I was also getting mild heartburn, which I normally never get)

I've now been off abx for 3 weeks, been having some red eyes and double vision, some aches and pains, but no brain fog, and this bloated, irritated stomach and gut that started a month ago but is slowly getting better.  So it might be both the Flagyl AND the magnesium.  Sigh.

I believe there are other things I could take besides Ketek (and the amoxicillin), and will mull this over while I wait to see the gastro next week and then take the issue back to the LLMD.  I'm also considering using Buhner's book to go the herbal route, but would like to give the abx as much opportunity as possible since they are working, then maybe follow up with a 'dessert' course of herbs.

Thank you everyone for the comments, much appreciated.  [Totally off topic, but not entirely:  when I was at the dr's office yesterday, there was a woman there with her husband and she was waiting to see the dr and from their conversation, she has Lyme or something too (this is an LLMD's office, after all), and it was kind of funny/odd/strange that she and I knew why the other was there -- we didn't know each other, but we shared a common experience, and had to keep looking away if we looked up at the same time.  It was very personal, knowing all that about each other and yet being strangers -- and I was thinking that I hope she has a place like this to go to talk!  Thank you everyone.  It means a lot.]