dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
And, how long have you been on it?
Just wondering.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I've been on it, along with Omnicef, for about a month. I just finished my first official herx. Glad it's over!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
I took it for 8 months,with bicillin. never a problem, except yeast.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
| IP: Logged |
posted
I am taking a "pulse break" from ketek -- was on 400/day, then 800 -- total of 3 weeks --- herx was unbelievable! I slept for days on end and was in tears from pain and brain fog.
Now, 4 days off, I'm feeling a lot better -- and my hip (which has been so bad I've been using a cane for 2 months) felt almost good today... so I think I will pulse the 400 dose at 4 days on/3 days off for a while, and see if I can tolerate that.
I can tell it is a powerful drug for me, but I need to be able to function, too.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
| IP: Logged |
posted
I asked my LLMD to switch me and my 15-year-old daughter from Ketek to "something else." She put us on Biaxin. We were on Ketek for about 4-1/2 months and our liver function tests were always fine. We both experienced slow, but gradual improvement over that time. Still, it's hard to say whether it was the Ketek or other drugs we are on, especially Mepron.
I asked for the change because of the Wall Street Journal article, which raised serious questions about the validity of the safety trials used by the FDA to approve Ketek. I was also concerned after reading posts by people who experienced liver problems while on Ketek, especially Jill E. My doctor is not worried about Ketek and probably thought I was overreacting -- which I may have been. It is just a chance I don't want to take, especially with my daughter.
Hopefully, the negative publicity will encourage the company that makes Ketek to come up with some better trials to demonstrate its safety.
Posts: 164 | From USA | Registered: Jul 2005
| IP: Logged |
liz28
Unregistered
posted
Hi, DLL. I've been on ketek for almost two years, and have never had problems with it. I take tons and tons of liver support, though, and for the past year have been able to exercise, even if just walking on a treadmill at a snail's pace, which seems to help the liver process all these antibiotics.
The reason for the long time period on ketek is actually a positive one, which is that ketek was so helpful in controlling Lyme, it uncovered two co-infections. I spent five months on bartonella treatment, and so far, so good. Babesia has been more stubborn, but the mepron/ketek/primaquine combination is proving to be a good one, and I'm going to try chloroquine/doxy/primaquine to see if it works. Again, since this is an open forum, no one should ever take these kinds of antibiotic combinations unless they are living on liver support supplements and taking probiotics and anti-yeast medication.
Since others have mentioned dosage, it's worth saying that I've never been able to handle the full 800mg/day dose. But 400mg taken twice a day was fine, and recently I've even gotten it down to 400mg per day. The babesia turned out to be a major problem, and now that it's under better control than in the past, the ketek is not as necessary. There's still no way I can stop taking omnicef, though, and I expect to be on the omnicef/ketek combination as a maintenance treatment for an indefinite time period--certainly while there is still a chance of having co-infections.
IP: Logged |
posted
Ketek/flaygl was my first round of antibiotics, and it saved my life. 4 months on, then mepron/zith 4 months.
Have been off antibiotics for 4 months. Last week I started ketek/tini and I am so excited. I feel so clear in my head...haven't felt this way in 4 years. I think it is a miracle.
My only concern is that, I have only GOOD news to report. No herx. This has me a bit concerned. But, I love this whole week of feeling and thinking positively.
Any ideas why I am having such a good response without herxing??
Posts: 190 | From BC Canada | Registered: Jul 2004
| IP: Logged |
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Thanks guys.
Liz, did you see my question to you on another thread about what you said about kidney damage recently? I can't remember where I asked it now. But, I remember you wrote that you had mild kidney damage and I wanted to ask you how you knew that/what tests you had and what results; and also how you came to the conclusion that it was Mepron that caused it (isn't that what you said?).
I am about to go back on Ketek, once again WITH Ceftin. Just waiting to be out of kidney results limbo and hopefully can go ahead then.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
| IP: Logged |
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Islandgirl,
I have been on and off Ketek for a year. Had to take a few brakes for stomach problems and dental work and now again because I am not sure if I have some kidney problems or not (not from Ketek though I don't think as number was low pre-ketek apparently).
But, I did not have any major herxing on ketek either, and it has improved my life quite a bit.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
| IP: Logged |
alexander
Unregistered
posted
i'm on ketek and plaquenil since about four weeks. it controls my symptoms and enables me to live a nearly-normal-life. no problems so far. i plan to take it for a long time if my liver also thinks this is a good idea.
IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic