I took my secong dose of Ketek(400mg), dinner time yesterday. (I was already on Malarone and Artemisinin)
I have been virtually untreated for over 5 years so my bacterial load is likely huge. This is also my first shot at Babs meds.
Ummm... I'm not that wimpy but this brought me to a level I'm not comfortable going past. It's slightly better this morning.
My question is about how many days in, does the herx peak?
I'm asking because if it's more than 2 or 3, then... I don't know what. (I can go to the point I did last night but I don;t think further is a good idea and even that not for a more than a couple of days.)
Thanks... sorry to sound like such a baby.
(I have left a message for the LLMD.)
[ 28. July 2006, 10:45 AM: Message edited by: trueblue ]
Posted by treepatrol (Member # 4117) on :
The worst part of the herx usualy lasted about 3 days for me a couple of days either side of that just felt crappy.
Pay close attention to ketek any yellowing of skin or eyes call Dr and stop in my opinion oh have someone look at you and knows eye and skin color they may see changes before you?
Posted by Aniek (Member # 5374) on :
I think my Ketek herx was worst at 72 hours after starting. I had great improvement on it though.
Good luck.
Posted by trueblue (Member # 7348) on :
Thanks Tree and Aniek, So it sounds like another day or so would bring me up to peak level. Hmmm... not sure I can and should I go there.
72 hours to peak and 3 days there. Got it; Can I do it or do I risk it? I'm not sure. The intensity frightened me last night.
I guess I'll wait on the doc and hope they say, "why not pulse it?" Or recommends something to make it easier.
Thank for replying, I know I'm kind of pesty right now. Posted by Aniek (Member # 5374) on :
You are very welcome. That's what we are all here for.
I know my worst herx was on Flagyl and I stuck it through. But it was pain, which as bad as it gets, I know isn't life threatening. If it is in anyway affecting your breathing or your heart, be careful.
Posted by lymeinhell (Member # 4622) on :
TB!!!!
And you thought being sick really stunk??!!
The getting better part can be just as bad (or worse).
I was fortunate enough not to take Ketek, but do know some non-lymies who have, and they reacted quite badly. (neuro symptoms - blurred vision, brain fog, skin rash).
So keep your LLMD in touch, ok?? Just in case it's not just a herx but a side effect.
The day's half over already... see how time flies? Next thing you know, you'll be through the worst of it.. Posted by trueblue (Member # 7348) on :
LIH!!!
Yipes! "the days half over" means it's almost time to take another one. (I don't feel so bad now that it's half lived twice.)
Thanks for the, otherwise, good thoughts.
I'm being careful; I promise, guys! No heart things, no breathing problems (other than the usual slight air hunger, at times) and no rashes.
I am stalling around hoping the doc calls back before it's time to take another, though.
Posted by painted turtle (Member # 7801) on :
hey trueblue,
of course you know, listen to yourself. in some ways you are also your own doctor.
i've been herxing for months already. can't chime in on the cycles....sorry don't remember!!
but again, really. don't be a victim to ketek.
i stopped tolerating that one after ??? couple weeks knowing for sure it was bad medicine (for me)
not that mepron is not just as challenging to endure, but differently (similar to malarone?)
course, i'm not enduring much anymore as far as taking meds, in quite a bad state.
by the way, have you found my head rolling back down your street?
if not that's okay, it's kind of herxing anyway. i'm sure it will return on its own soon enough.
have you tried the soup idea yet for detox???
i'm glad you are posting. it is quite a long process you are only beginning! even though i know you have already gone through quite a bit with attempted treatments and everything else.
what one thing that has rung soooooo true for me is something is it Tony Zman (forgive me if i can't remember screen name exactly) said and it was something like....
we have already forgotten everything they (ducks) could know about ld
those aren't the exact words, but hey...you know a lymie when you "see" one.
sending good thoughts.....i know its hard and often lonely!
Posted by 5dana8 (Member # 7935) on :
Sorry if this is bad timing true
But if you really can't tolerate the ketek ask your LLMD about biaxin. It worked really well in my babs combo.
Take care
make sure to talk over everything first with your LLMD
[ 03. August 2006, 04:27 PM: Message edited by: 5dana8 ]
Posted by trueblue (Member # 7348) on :
PT,
Last night my head went out rolling with yours... last reports they were down on Atlantic Avenue wishing it were Thurday so they could see the Elvis impersonator at Elwood's. Rolling, bodiless heads have interesting taste in entertainment. Alas, they haven't been seen since. Will issue an all points bulletin soon!
I haven't tried the soup yet. But this afternoon put up water for tea. The watched pot wasn't boiling so left the room for a moment. *some time lapses*
I get done with my shower and smell the stove on and the water is just about boiled out of the pot. So, I add more water and sit in the kitchen not to be outsmarted, again. Ha! Poured the tea, and left it to steep.
About an hour later I went somewhere with my mom and remembered the tea was still on the counter. Came home and put it in the fridge, it should be iced by now.
Back to the serious thing for a moment. I'm not sure this is a bad med for me; it might be a perfect one. It's just a bigger and faster herx than I expected.
I'm still dithering about when to take it...
I think I'll likely try as now it's pretty much out of my system so don't feel quite so awful. I'll try the soup if all else fails.
Ok, mind made up, I'm going to take the next one, now. I may be back whimpering in a couple of hours. Sorry!
Thanks for the help, support and advice, you guys.
I want to make this med work if possible. I'm not good with Biaxin and not so great with Zith these days either.
Posted by painted turtle (Member # 7801) on :
oh trueblue, that's totally nuts!
i am not so sure you are ready for soup.
i've done that with soup but lucky for the sound hypersensitivity....i would wonder what was that noise in the kitchen when the bubbles were popping it was boiling so hard!!!!!!
i'd go back to find the soup.
actually, might be easier than tea...since you can smell it. unless of course you're totally zoned out, which I gather might be the case considering.
yes, indeed ketek may be the one for you.
i wouldn't think it would take too long to have a sense of what is really going on with it...i know i used to get seriously blurred vision with ketek. and definitley thought it was going to actually kill me for how it made my heart feel.
Atlantic avenue, uh? Well one thing the disease hasn't stolen is your cleverness!
Posted by Marnie (Member # 773) on :
Excuse me...forgive me...but..
with all the absolutely horrible news about this antibiotic...
why are you on THIS antibiotic?
Let me just cut and paste an internet search about THIS antibiotic...
Sponsored LinksKetek - July 2006 Update personalinjurylawyeramerica.com Latest news on Liver Damage Risks from Ketek. Free lawsuit review.
Ketek Lawsuit www.ketek-liver-failure.com Lawyers Helping Ketek Victims in all 50 States. Free Case Evaluation
Ketek Alert: Liver Damage www.consultwebs.com/ketek_alert Antibiotic Side Effects of Ketek. Injured? Free Case Review.
Posted by stella marie (Member # 7216) on :
Hey True,
Don't you have HepC? Maybe I have you mixed up w/ another. If so I'm assuming you told the doc who gave you the ketek?
I'm not a doc but wouldn't this be cause for concern? Just checking on you ok?
Stella Marie
Posted by trueblue (Member # 7348) on :
Yes, anything could be cause for concern regarding the liver (with or without HepC). pharmaceuticals, tylenol, herbs, whatever.
Yes, this was discussed with the doc and this was my choice. I was given the appropriate information and it was made sure I understood my decision. It is being monitored very carefully.
I do appreciate everyone's concern, help and support. So please don't think otherwise, ok?
I'll try to explain my reasoning although I'm not sure it'll sound sound right now. I had a few things to consider coming to this decision.
1) I needed an ABX in this class to combine with the Babs meds.
2) I had the most miserable time of my life on Biaxin for 2 months when I came off my first IV. I refuse to ever take it again.
3) Zith, which I had taken for years, with little problem became intolerable for me quite a few years ago. The half life is far too long (68 hours) and I can't eliminate it fast enough.
Additionally, I can't afford to buy it at $400 for 2 weeks of generic. I am not eligible for the PA program for it as I don't have an HIV diagnosis and am thankful for that.
I really don't want to take Zith again, right now. I has become a miserable ever escalating, non-stop herx for me, time and again and I'm not willing to do that right now.
4) My treatment is often ruled by what meds I can afford or obtain somehow. I had this available and I made the choice.
5) I think all things are potentially dangerous and think the FDA are a bunch of *******s. I don't believe them and do not think they have our or anyone's best interests in mind. It's a money thing.
6) Ketek's half life is 10 hours. So my 400mg dose is 200mg in 10 hours and 100mg in 20. Therefore it will build up much slower than Zith with the nearly 3 day half life. This is greatly reduced by the time the next dose is added. Therefore, for me, should be easier to clear.
7) I'm doing this slow and being very careful. I'm being monitored and have a doctor's appoinment on Monday. I am being watched and watching.
Perhaps I shouldn't have posted at all and shouldn't be whining, I'm sorry.
Again, thank you all for your input and support it is and has been greatly appreciated.
(And I'm also sorry this post isn't as well organised or thought out as I'd like, I just typed it as I went.) Posted by stella marie (Member # 7216) on :
Oh stop now..... of course you should be posting , isn't that why we are here, for each other?
Whether it is to ask about meds, docs, or whining we are all in this together and not judge one another.
I do understand your situation w/ meds and $$$, and thanks for explaining it trueblue.
I'm just sorry there is nothing I can do but be here and listen, so whine away.
I'm here and so are many others.
And ya know what there ol' blue? Your post was organized and coherent
Stella Marie
Posted by trueblue (Member # 7348) on :
Thanks Stella,
I don't know what else to say (having come quite that close to a flouce).
Can I blame it on bugs in the brain?
Oh, the other thing I forgot up there is this is a trial run; just like any other course of treatment. I can always stop, if I want (or have) to.
That said, tonight's dose is way easier than last night's, so far... good thing... because I'm not allowed soup, yet. Posted by just don (Member # 1129) on :
I dunt kno nuttin honey!! but sure wish ya didnt have ta do it, but since ya do, hold on and enjoy the ride!!!(An minimize the pain)I still B --just don--
Posted by trueblue (Member # 7348) on :
quote:Originally posted by just don: I dunt kno nuttin honey!! but sure wish ya didnt have ta do it, but since ya do, hold on and enjoy the ride!!!(An minimize the pain)I still B --just don--
missed you kiddo
Posted by trueblue (Member # 7348) on :
Just a quick update... The 3rd day's dose was much easier than the second, Phew. I'm thankful for that. (there was no whimpering)
I did speak to the doc's office and have decided to stick with it a while and see what happens. If I can tolerate it and the testing stays normal maybe this IS something that will work for me.
Posted by JeffM (Member # 8919) on :
Trueblue, after a month on ketek i started herxing the worst I ever have. Just a warning. It included a lot of neuropsych and neurological problems, as well as pain. I know everyone is different, but that drug was particularly strong for me.
Posted by Aniek (Member # 5374) on :
quote:Originally posted by JeffM: Trueblue, after a month on ketek i started herxing the worst I ever have. Just a warning. It included a lot of neuropsych and neurological problems, as well as pain. I know everyone is different, but that drug was particularly strong for me.
Ketek may cross the blood brain barrier. That would explain increase in neuro symptons on it.
As for the FDA, there are dangers with all drugs. And it appears the pharmaceutical company may have committed fraud in this case. That is a problem. But if people are educated about risks of drugs, they can make decisions with their doctors.
Posted by trueblue (Member # 7348) on :
quote:Originally posted by Aniek:
quote:Originally posted by JeffM: Trueblue, after a month on ketek i started herxing the worst I ever have. Just a warning. It included a lot of neuropsych and neurological problems, as well as pain. I know everyone is different, but that drug was particularly strong for me.
Ketek may cross the blood brain barrier. That would explain increase in neuro symptons on it.
Thank you Jeff and Aniek! The first pill went straight to my head and what I was experiencing was completely neurological, big time. It's much better now.
In my experience with most ABX the month herx is the Big One.
Thank you, Jeff! (seems to me you've been needing that lately, as we all do)
I'll be prepared by then and thanks for the warning on intensity.
I do believe this is a powerful drug and I'm only taking a half dose compared to what most are taking. I'm sure thankful for that.
Posted by psano (Member # 7785) on :
FWIW, I was on Ketek for about 9 months. I did have one episode of elevated liver enzymes during that time which normalized after adding milk thistle and ALA 300mg Bid.
I improved greatly on it. MANY antibiotics have potentially dangerous side effects. The important thing is to monitor your liver function regularly (monthly, in my case) and be alert to any changes. According to my LLNP, the famous Dr. B has treated thousands of patients w/Ketek w/o problem.
If you're not already taking milk thistle, it would be a good herb to add to your daily regimen... one capsule twice a day.
Patti
Posted by trueblue (Member # 7348) on :
quote:Originally posted by psano: FWIW, I was on Ketek for about 9 months. I did have one episode of elevated liver enzymes during that time which normalized after adding milk thistle and ALA 300mg Bid.
I improved greatly on it. MANY antibiotics have potentially dangerous side effects. The important thing is to monitor your liver function regularly (monthly, in my case) and be alert to any changes. According to my LLNP, the famous Dr. B has treated thousands of patients w/Ketek w/o problem.
If you're not already taking milk thistle, it would be a good herb to add to your daily regimen... one capsule twice a day.
Patti
Thank you for the positive feed back and advice, Patti!
I am taking 300mg of ALA already(and could add more) but haven't been taking the milk thistle because I was confused over the artemisinin and malarone. I think I'll add it back in to my supps I'm taking as far awy from everything else that I can.
If they'd just add more hours to the day to accomodate these things.
I took a base line for my LTFs which generally run exactly normal and am to be tested every 2 weeks. I have an appoinment with my internist this week inbetween so may have him check me out as well to make sure.
So far, other than the 2nd night, being kind of hairy, I seem to be handling this alright. I'm hoping that this is finally an ABX I can take and see some improvement. I've been so many years with no hope and help I'm finally thinking I'm may be on the right track.
This is my first atempt at long untreated Babs.
I have some hope for the first time in almost 10 years. It makes me cry to think things can and may finally change for me.
Have I mentioned herxes sometimes make me mushy and weepy. Posted by lucy96734 (Member # 8372) on :
I have been on Ketek for 7 months and have made HUGE improvements. I have my liver checked frequently and so far it has been stable.
I had an increase of neuro symptoms when I first started it but they have now decreased. It has been the only Lyme med I have been on and I have had Lyme for at least 5 years prior to treatment.
It has literally given me my life back. I am off all pain meds- I can't believe how far I have come in this short of time. A year ago I was in pain management and on major narcotics, now none.
If your liver isn't effected Ketek seems to be a great drug. I also was paying out of pocket and was glad it wasn't too expensive.
I hope you are feeling better!
Posted by trueblue (Member # 7348) on :
Thank you Lucy for sharing that!
I hate to jinx anything but so far the Ketek has been getting easier each night.
I woke yesterday morning drenched but with no fever for the first time in months.
Today, I woke up feeling fairly good, I hate to jinx it by mentioning it at all. I realize it is likely a fleeting thing but it is the first glimmer of hope I've had for years. I'll take it.
If one morning or hour or ten minutes that can be better than what I've been putting up with for the past couple of years... amazing!
Ha, is this what hope feels like? I'm crying because I almost feel human, how silly is that?
*note: I know there'll be a big herx coming down the line and I have many neuro symptoms but I don't care. Posted by lucy96734 (Member # 8372) on :
trueblue- I know what you mean. Isn't it amazing to actually feel like you are fighting the cause rather than trying to manage symptoms? I had the most severe arthritis in my hands for years, I couldn't make a fist or use my hands for 30 minutes to an hour each morning - within 2 weeks of taking Ketek my hands were normal again. I felt like I had been given such a gift.
For me the neuro symptoms did increase. The numbness, tingling, and burning in my feet and hands (and ears) got worse. I also have Babs and things got better when I started treatment for that around month 3.
Good luck!
Posted by trueblue (Member # 7348) on :
Yeah, Lucy, it's pretty good to feel like something is finally doing something. I't been a very long time.
I had been treated fairly successfully many years ago but have been living in a special circle of h*ll for 10 years. No one knew I had Babs back then and when I got a positive test in '98 my doc refused to treat it. It's only now I finally found someone willing to treat the coinfections. Yay!
That's completely awesome about the arthritis in your hands. And great to hear the neuro symptoms have improve significantly.
I'm majorly neuro and even the little bit of good on waking this morning made a huge difference to me. I haven't seen anything go right in a long time. There's a very long way to go but I'm finally back on my way. Posted by trails (Member # 1620) on :
hang in there Tb---dont have anything to add but hope you are paving the way for people like me who might need to be taking the ketek in the near future. you GO TRAIL BLAZER!!! ps--glad you are feeling a tiny bit better.
Posted by trueblue (Member # 7348) on :
Thanks Trails! I'm hanging in and I'll let you know how it goes.
Hang in there yourself and I hope things start turning around for the much better soon.
![[Roll Eyes]](rolleyes.gif)
![[Wink]](wink.gif)
Or recommends something to make it easier.![[kiss]](graemlins/kissing.gif)
![[Smile]](smile.gif)
That's what we are all here for.![[spinning smile]](graemlins/spinsmile.gif)
![[Eek!]](eek.gif)
![[Big Grin]](biggrin.gif)
![[lol]](graemlins/lol.gif)
(seems to me you've been needing that lately, as we all do)![[Cool]](cool.gif)
![[hi]](graemlins/hi.gif)