Ketek ABX

Discussion in 'Lyme Disease Archives' started by morningsonshine, Jul 19, 2006.

  1. morningsonshine

    morningsonshine New Member

    Has anyone else used this ABX. My Dr. wants to add it with my ceftin, and i was surprised, i was expecting the flagl.

    Is Ketek safe? It seem to be a new drug, and very potent.
    My Dr. said it showed the best results in the test tube.

    Once again, my argument is, "I'm not a test tube!! I can be damaged, and feel pain!"

    Sigh!!

    On a good note, i've finally had some good days.
  2. jarjar

    jarjar New Member

    I have heard mostly positive things about it on (edited to remove message board site name per rules) but a few people have had major problems with it. I'm sure your doc will have your liver checked often while on it.

    One person had severe liver problems and did not drink while taking it.

    It has been used in Europe since 2001 I want to say but problems arose with a few here in the states that were drinking while taking it. When I say problems I should say they died.

    Dr. B has used it with a large amount of patients and claims no problems it with or so I have heard.

    Hope I don't sound to vague as its been awhile since I've read a discussion on it.

    You might want to click on the search tab at (edited to remove website per rules) and type in Ketek to get more scoop on it.

    good luck
    jay
    [This Message was Edited on 07/19/2006]

  3. ajp

    ajp New Member

    Hey Misty,

    See my reply to your other post under your name here...but I am starting Ketek next week in addition to the Ceftin. I am kind of scared to start it too.

    I am doing pretty well back on the Ceftin, finally...the second time around. I am determined to get well and to take these abx. My LLMD says a small percent of people just can't take the the abx. I noticed a return of my symptoms, the numbness and brain fog just being off of the abx for one week.

    Lets keep in touch and encourage each other as we are taking the same meds. I am glad to hear you have had some good days. There is hope.

    Love Mindy

    [This Message was Edited on 07/21/2006]
  4. minimonkey

    minimonkey New Member

    Ketek is a controversial drug, to be sure. It has been linked (though not proven causative) to liver failure in several people, sometimes resulting in death.

    That said, I am taking Ketek, and it has made a remarkable difference for me. The initial herx from it was horrid, but once I got through that, I have tolerated it really well.

    My non-MD opinion (and that of my llnp) is that it is really important to take a lot of liver support while taking ketek, be on the lookout for any signs of liver problems, have your liver enzymes checked regularly, and do not drink any alcohol while taking it. I'd be very wary of taking it if there were any signs of pre-existing liver conditions, too.

    Just a word of warning re: referencing other message boards in your posts -- I was warned by the moderators that I broke a rule by posting the name of another message board. I actually thought it was ok since the board in question does not sell anything, and I had seen it mentioned many times before, but the rule applies to mentioning any other board at all by name. I just wanted to let you know so you all are aware of this.
  5. ajp

    ajp New Member

    Minimonkey,

    Glad to hear of your good results. Thanks for the warning, but I meant the response to another post on this board, so hope thats ok.

    My hubby and I are going away for the weekend, it has been planned for months, but I am so thankful that I am feeling ok. I was really worried that I wouldn't be able to go.

    Have a great weekend. Take care. And thanks for the info on the Ketek. I am still afraid to start it, but will. Do you take anything to help protect the liver?

    Mindy
    [This Message was Edited on 07/21/2006]
  6. minimonkey

    minimonkey New Member

    ajp--I didn't mean your response abt the rules, but rather the first one, which has now been edited.

    Just clarifying. I know I was confused about that particular rule, which is why I happened to break it...

  7. jarjar

    jarjar New Member

    The rules around here are strange. I purposly did not type in go to www. l@##$$$#.org. I just mentioned one word not the full official site address.

    Its hard for people to learn things on this site due to this rule.

    Maybe someday they will relax on people giving hints on telling others how to get important imformation they need.

    I do not fault the moderators as I presume they are doing what they are being told to do.

    j
    [This Message was Edited on 07/22/2006]
  8. bct

    bct Active Member

    I guess I just figured this out. We can post urls of non-commercial sites, unless they have message boards on them.

    I got a note from pro-health telling me to review the rules, which I have done, and this is what I think has happened. Problem is, I guess, is that a number of sites with message boards also might have an ad by a sponsor. Not sure if this is true, as I don't visit other sites very often.

    Peace,
    Barry
  9. minimonkey

    minimonkey New Member

    The warning I got was just for posting the name of the site, not the url. I don't fault the moderators either -- that isn't my point at all. I just didn't want anyone else having to be warned, as I was, for a misunderstanding.

    It *is* difficult to direct folks to information -- and I'm never quite sure how to go about it while staying within the proper boundaries.

    I've read the rules, but some of them (like that one) are still open to interpretation until clarified.

  10. redsox10

    redsox10 New Member

    My daughter was on Ketek for 14 months. It is great for the neuro things. It helped her.

    My daughter had no problems with her liver. Make sure you have labs done for liver functions routinely.
  11. dontlikeliver

    dontlikeliver New Member

    Interesting, I thought 'we' would have moved on from there ages ago (months/years) because how on earth are people supposed to give/get help if nobody is allowed to share where and how to get that help??
  12. morningsonshine

    morningsonshine New Member

    I haven't been here for awhile again, I've been drifting away in some 2 dimentional world, very flat, very gray.

    I go to the Dr. this wed. that's when i'm suppose to start the ketex.

    I'll let you all know what's happening.

    Hi Mindy,
    how's it going????