, but I'm rather philosophical about the whole herx phenomena. I don't think you have to have a herx to know the meds are working. I don't think you have to suffer for weeks working thru a herx - if the meds are making you sick, get off them.Today, took 800mg prescribed dose, had very bad reaction. An hour after taking it, my chest started to hurt, then I passed out for two hours and had horrible, vivid nightmares. Just woke up feeling like I've been run over by a mack truck, coughing, chest hurts.
Other people posted and said they experienced their ketek herx on day 2. Would be interested to hear if others have had this reaction. I had a similar one to saventaro when I first started, because my spirochete load was heavy.
The question about Mepron is definitely one for your doctor.
robi
Second day through first 8 days was awful. Can;t say I really felt better until beginning my 3rd month. I would have 6 good days, then back to 3-4 horrible days, etc.
BUT WAIT!! I began my 3rd month of this dosage. Have now had 2 whole weeks of feeling 75% better. Neuro problems are down very significantly. I hope to God it lasts because I really never want to go back to where I was before.
Keep the faith...this is only my first time of drug therapy so have nothing to compare it with. But it worked BIG TIME for me.
Question to all you experienced lymies: Am I courting a big fall by being so optimistic? I am also scared: keep waiting for the other shoe to drop.
island girl
If anyone out there is considering ketek, please be careful. I've accidentally doubled doses on other abx such as zith or plaquenil, because I take a number of pills a day and occasionally make an error. Ketek is clearly a much stronger abx, and you might want to ramp up slowly.
I have been fighting LD for one year (although I have had it for 8 years) with doxycycline and Biaxin, plus "Ceftin" since December. I kept relapsing and increasing the doxy so that ultimately I was on 600 mg of doxy, 1000 mg Biaxin, and 500 mg of Cefuroxime axetil. One attempt to take flagyl last fall resulted in neuropathy and was quickly stopped. I also take Difucan every 4th day.
My neuro symptoms which had returned in June and July were about cleared up by the increased dosages when I started taking Ketek in August. I had stopped the Biaxin 5 days earlier, and replaced it with 800mg of Ketek once a day. Within two days my vision was bleary and I had a mild headache. By the third day I felt rotten, sleepy and weak, and I had more sever headaches (like I had the flu, with no fever, for one week). Within one week arthritic pains returned, that I had not had for nearly a year: stiff and sore joints in my fingers, sore knees. Also "balance" problems and confusion in stores, slight sore throat all the time; memory problems still present; emotionally more sensitive (wept a lot watching the Olympics). Also had bad night sweats during second week, and a disgusting odor from my body (breath and sweat) like I experienced when I had the old red measles (not the 3 day versions) in the 5th grade. I had never had a herxing reaction before when I took abx; my symptoms just immediately or more slowly improved. This time was definitely a different experience.
After two weeks the arthritic pains were much improved in my legs and lower back. My back which had greatly improved over the past year, may have even gotten better. I awake with more stiffness and more pain than before Ketek, but 90% of this disappears fairly quickly. There is just a slight pain in fingers now most of the time. The night sweats have also let up greatly. In the past two weeks the biggest problem has been the onset of sever insomnia. Something that I had never suffered with before. It's as if my brain has forgotten how to go to sleep if I lie down in a bed. I have been taking sleeping pills in order to get a little sleep on several nights the past two weeks. Other times I sleep little, with disturbing dreams. Then during the day I suffer from fatigue, of course. My memory is still bad. I'm even wondering if my vision is starting to deteriorate again. My overall feeling of well being is no where as good as it was prior to starting the Ketek, although I know those abx were not eliminating Borrelia, just suppressing it for a while.
So this has been my experience. I am very interested in what results others have had, particularly those in Canada and elsewhere that have been taking Ketek for more than a month. I'm a little more concerned about taking this abx for a longer term because we in the US don't have the experience of knowing what to expect from that course of action. Also, what seems to be the best combinations of abx?
For those that are interested, there were a longer and shorter string of posts here on ketek at: http://flash.lymenet.org/ubb/Forum1/HTML/027242.html and http://flash.lymenet.org/ubb/Forum1/HTML/025555.html
-Caveman
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I hope you continue to improve.
-Caveman
We've had hurricane stuff going on here and low pressure affects me terribly. I feel pretty awful - not bed bound or anything - just lousy. Having a terrible time staying awake the last few days too.
I'm not better that's for sure! Not sure I'm herxing though.
Has anyone noticed an improvement after being off abx for a while?
Interesting to hear how others are doing. Best to everyone!
Smanatha
But I have been on the zith-omnicef-flagyl-plaquenil combination for a year, and am continuing to take omnicef and plaquenil. That may account for why the Ketek is working relatively quickly.
karen
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waiting and praying for a miracle
I was told that correcting my TSH could bring about an increase in energy. Therefore, I'm wondering if other Ketek users, all of which seem to be reporting ongoing fatigue, could also have had changes in their thyroid function?
Any of you have any personal medical data on this possibility, or not? -Caveman
Pretty major herx on about the 4th day I think it was and felt like I'd been hit by the bus and all the neuro stuff. And sinusy etc.
I've had 2 pretty intense neuro herxes in there along the way as well. I am having more dizzy spells than usual. The ear ringing gets pretty intense as well.Lots of headaches.
Howeeeeever...
What I am noticing is quite amazing actually. My energy levels are returning. Incrementally.
I spent almost the last year in bed as almost any kind of exertion would put me into a huge crash (even just walking up the driveway).
Over the past month, I noticed that I would have energy to do a few things just out in the yard or garden etc. I'd still be exhausted and have to lay down for a while, but I'd get up again and feel refreshed. Before this, I'd go and putter in the yard and be in bed by 4:00pm and that was it for the day, or even longer.
I started venturing out and doing some shorter hikes.
I've gone out to visit friends and socialise, which has not been an option for me for about 18 months because of the crushing fatigue and head implosions and all that horrible stuff.
I noticed I wasn't crashing as hard. I started going on longer hikes, just local stuff.
The past 10 days have been amazing.
I used to climb a local mountain on a regular basis but havent been able to since 2002 because I've been too sick.
One of my *get better again* goals was to climb that mountain one day. It never seemed like that was going to be possible.
Well, I did it on Saturday! Five hours hiking/climbing but out there for an 8 hour day!
That is truly unbelievable.
The next day I spent another four hour day out puttering/hiking around (not exertional though)with friends.
Six weeks ago, I would have never dreamed this would have been an option. Two days out in a row just didn't happen.
Everything I do I measure in energy expenditure and what it will cost me in the upcoming days (both physically and neurologically)
4 months ago, I thought I was headed for a wheelchair. I was so weak. Many times, I thought I was heading straight for assisted living (and I'm only 45).
Today, I rested and I feel good enough to go and do a hike tomorrow. I'm looking forward to raising the bar and getting some fitness back on.
This is just a miracle as far as I'm concerned.
I have to admit, my neuro problems are still quite severe, and the exhaustion is still profound, but I seem to recover with less rest.
I am stronger somehow and have energy that lasts longer than a few minutes before I fizzle out.
I feel like a character out of that movie "Awakenings".
I sincerely believe that Ketek has been super good for me. I hope the effects last.
It worries me that the trials were apparently not long term though. I worry that this may not last. But, I am sure enjoying the ride while it is.
I have modified my diet and do a lot of juicing and eating raw food(started in June) and did get my amalgams out, but.. it was not until I started the ketek that I noticed the shift in my energy levels.
It could be everything combined, but I have really started to do well in just the past few weeks.
Sleepy (I guess I might need to change my name soon!)
I asked my own llmd about using Ketek for me because I have been hearing so many really good things about it, and he's a bit more of a fence sitter when it comes to its benefits and based on my symptoms I would not be a good candidate for it.
Well this is my son's fifth week on it. He herxed around the third week. It seemed to me that he has been more foggy, but part of that is trying to get everything done after missing school. He has said that his nose feels more stuffed up.
Other than the herx, he is not noticing anything yet. Hopefully the herx is an indication that something is working...
cootiegirl
I feel awful - Since I've been on the Ketek the fatigue has been pretty bad but now all symptoms are at an all time high, and the fatigue is much, much worse. Assuming it's a herx (?) I did some stuff at home on Sunday, stayed fairly busy, but I don't think anything I did would bring about feeling this bad. This is as bad as I've felt in a very long time.
My head hurts, muscles are spasming really bad and that hasn't happened for a long time, also sort of nauseous. Just yucky, sick and in terrible pain. My pain meds aren't even coming close to touching it. I usually get pretty good relief but not for the last several days. Yesterday it felt like I hadn't taken anything.
All I can hope for is a light at the end of the tunnel. I feel so sick and hope this means that I might actually see some improvement soon!
Appreciate reading about others' experiences with Ketek, and other meds. It helps to know what everybody else is doing.
Thanks!
please let your llmd that you are herxingand feeling lousy for so long..ok?
I don'tknow why we automatically think that all herxing is a good thing..maybe a dayor two to tell us the meds are working..but not THAT LONG!
Please have it checked out..
Lisa
IMO it seems like if a person were having a herx, that they would feel lousy for a few days, then some recovery. If people feel lousy immediately taking a med, to me it doesn't seem possible something can die off that quickly and probably what the person is experiencing is some reaction to the meds.
I don't know, maybe I'm just jealous because I don't think I've ever really herxed and am feeling somewhat deprived , but I'm rather philosophical about the whole herx phenomena. I don't think you have to have a herx to know the meds are working. I don't think you have to suffer for weeks working thru a herx - if the meds are making you sick, get off them.
This is not a criticism of the previous poster that has been feeling awful for a few weeks, but just some of my observations...
cootiegirl
Update on my kiddo. Feeling yucky again today - about three weeks since his last yuck/herx. Headache,fatigue, muscle stiffness, some nausea. Called the doc and he's stopping the Ketek for a couple of days, then slowly reintroducing back. Think this stuff is stirring things up, so I'm still standing in the hopeful line....
cootiegirl
I am having a good response to ketek after taking two years' worth of heavy duty abx: plaquenil, rocephin, flagyl, omnicef, zith, ceftin, and doxy, plus herbs like saventaro and coptis, and DMSA detox. So there is no way I am in the same position as someone who is just starting out.
Another important factor is that my parents are paying for my insurance with their life savings, so I am out for blood, as they say, and am willing to take mountains of abx I'd never recommend to others, even if they are possibly unsafe. Better to be carried off by a bad reaction than continue the shame of being disabled.
Also, I'm taking very low daily doses of minocycline, and am continuing on omnicef and DMSA. There is a real possibility that my positive experience with ketek (assuming it lasts) is influenced by these abx, even though it's clear ketek is responsible for most of it.
She's a gestational Lymie but not dx'd until 2002 by Dr. J. She has taken all oral meds including zithromax, flagyl and mincycline in various combinations along w/ Diflucan, acidophilus and ADP (oil of oregano).
Besides the complication of cerebral palsy, she reports headaches, fatigue, nausea, problems w/ short term memory and difficulty paying attention.
She has been on Ketek since August 12. We started slowly and took 10 days to work up to the 800 mg dose. She reported some increased fatigue, pain, dizziness about 5 days after the full dose.
We noticed an immediate runny/stuffy nose combo and a dry hacking cough - no fever w/in two days of the first Ketek dose. Seems to be related to the medicine. Also, her eyes remain dilated. I contacted the company and advised them of these effects.
I've had her Pediatrician examine her and her eyes are responsive, just dilated. The cough has basically gone away now as has the nose stuff! Just the occasional cough now.
We are encouraged by her increased energy level and most recent report card which reflected better grades! She even got a B in Algebra. She seems to be not struggling as badly has in the last few years and this is her first year of high school!
We remain cautiously optimistic and hopeful.
Sherry R
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You poor thing - what pressure to not bankrupt your parents!! They're very dear people and obviously love you very much. My mother helps me out a lot what all she's done for me and my family.
I have insurance where I work so I have to keep working whether I feel like I'm able to or not. Sometimes, I resent that, but then again, I'd go stark raving mad at home.
I'm really hoping the Ketek works. LLMD said if it didn't we would probably go back to IV Rocephin - I really don't want to do that. I did improve with the Rocephin, mine is neurological, but I hated being so tied down. I'm still paying for it too.
Everyone - take care! Hope somebody gets some relief! It would give the rest of us some hope!
Are there supplements that can help while you're on the abx? I've taken Oil of Oregano and Olive Leaf - supposed to be immune system boosters. Are there better supplements than that? I hate to take soo darn many pills! I feel like I'm floating every time I take everything!
Any more news?
I'll be starting Ketek today. Put in my script at lunch time.
I'll also be continuing with 500 mg Ceftin 2 x's a day.
Thanks,
Corgilla
Started a new part time job today, significantly lower than my real skill level but in my field for the first time in a while. I went to my grad school today to socialize, and everybody was swamped with work. Also, notice that four years have gone by since I got sick, I'm much older now than all the newcomers to my field, and I must get back to work if I want to rejoin my peers. Realize, too, that even though my doctor is a compassionate person, I fell through the cracks at his practice, that he could honestly care less about curing me, since the basis of his practice is really to stabilize people, and that I must get my health back completely if I'm going to move on with life at all. It was completely depressing, but kind of a relief, too. At least I don't have any illusions...
Next month I am supposed to stop the Zithromax and start on Ketek as well. It is my understanding that different abx target different strains of BB. That is why some people react to Ketek and some don't. My LLMD says he sees about a 50/50 result. Anybody care to comment?
Ciao,
Tim
That's great news.
I know it's only been a couple of days for me but I'm having a little sore throat, and a little stuffiness.
I think I'm feeling better though. It's a general well-being feeling. I'm not dragging myself around as much. Woke up refreshed this morning.
Well, my left thumb just went berzerk-moving around by itself. Yup, just this second. That's one that I had years ago but haven't had since. My right thumb was doing it for the last couple of weeks. There it goes again...
I know I have a "Quest" strain of Bb so I hope Ketek works for one of those 2.
It's great to hear that mathias(?) is treating mycoplasma fermentins with it. I've got that too.
Oh yeah. The reason there isn't a lot of info about it is it's only been available in the US since earlier this year. Passed fda approval in april.
Can't wait to hear more,
Corgilla
If it's actually doing anything, I'm not sure yet, but it's sure nice not to have that constant nasty taste in my mouth that you get with biaxin!
I'll keep ya posted.
Sue
--Kris
I've been very tired, but I've also been very stressed and haven't recovered from doing last minute campaign work on the election. So I can't blame that on the Ketek.
-Aniek
Within a few days I started aching all over again, and my neck pain is back! Within 4 days I had a severe anxiety episode. That has not happened again. I have one good day and then the next is bad and I have to stay home from work and rest. This is driving me nuts!
I'm also experiencing the sinus stuffy crap. I thought I was getting my daughter's cold, but now I think it is attributable to the drug as my "cold" has not progressed.
I'm hoping for better results in a few weeks! I need to get back to work or apply for disabiliity
Gail
When I can afford TOA-free cat's claw again, I'll also go back on it, because it helped the neuro Lyme a lot.
For a while there, I thought the ketek had stopped working. In fact, it revealed a had a raging case of babesia--the ketek worked so well on the Lyme (along with omnicef!) that I could finally see certain symptoms had nothing to do with the Lyme. After four years. D'oh!!!
I was just replying to Aniek's post on Ketek and fatigue and I got a little carried away.
I think what I was posting is better off in this thread. I'm somewhat "double posting." The first 2 paragraphs are for Aniek. The rest is me going off on my Ketek tangent.
Hi,
On my 7th day of Ketek and haven't experienced fatigue. If anything, I'm less fatigued than I have been in months.
I will say, immeditiately after I took my first dose (around 7pm), I layed down and couldn't get up till morning.
I was going to post this seperately but I had my first productive day in months on Saturday.
I vacuumed, changed the linens, went grocery shopping, took stuff to Good Will and did all the laundry. All in ONE DAY. 
So far, I'm not paying for it either.
---Caution: Female stuff coming up---
The one thing I will say that's bothering me. The day after I started taking it, I started spotting. Then after 6 days, I've got a very heavy flow. My period isn't due for another week and a half.
Before I was dx'd, spotting all month was a problem. It was resolved immediately when I started abx.
---End Caution: Female stuff finished---
Since I'm having old symptoms, maybe I'm going through my old symptoms in reverse which I've heard has been known to happen with this disease.
I'm also having a little eye trouble while driving. Have to concentrate more on not glancing around and just focusing ahead or I lose focus slightly.
I have many more headaches than I have had in a while. Advil liquigels or aspirin have taken care of them-not like in the past.
I've had some neck/joint stiffness/pain but that's nothing new. Maybe a little more than before but bearable. They are also helped by the OTC pain meds.
I've found it more difficult to get to sleep. Once I am asleep, I seem to be sleeping very well. I'm also feeling like going to bed at the right time or even early for me (11ish).
One other minor observation that might seem weird to some. Days seem to be getting longer for me. There seems to be more time in the day for me to get things done. Does that make sense?
Hope this helps others on their quest for health.
Take care,
Corgilla
I was really careful not to over-do. Took it easy and am still not sure if it was improvement or provigil! I don't think it was provigil - this was an all-over feeling of "better".
Anyway - I'm staying on the Ketek at least for a couple more months to see how I do. I hoped I'd be able to track how I'm feeling, unfortunately, this past Friday my lower back "went out" - I don't know what's happened but I'm in a tremendous amount of pain. I thought at first it was a spasm but not so sure now. The pain with this is different than I've experienced before - hot/grinding at the bottom of my spine, then over the left side and down my hip a short way.
I think my pain meds are masking it some. I'm on duragesic, Friday night I changed it and Saturday was ok, very painful but I got by. Sunday was the second day (when I don't get as good pain coverage anyway) and I was in misery. I changed again last night and am doing "ok" today. I guess I'll know a little more tomorrow, it will be the second day of this one. If it's like Sunday I will try to get in to see the doc. Hopefully I'll get in while I still need to! I really don't want to do the ER!
I hate to call in an "emergency" - I'm always afraid they think I'm just being a baby! But this is bad - right up there with labor and birth! (I know what I'm talking about there!)
Take care all!
quote:
Originally posted by KrisKraft:
FYI, at the ILADs Conference, one of the doctors (Dr. B?) said that "the jury's still out on Ketek because of GI tract overgrowth."--Kris
does the above quote mean studies have shown that one is more likely to develope c. diff or yeast problems from ketek than other abx?
I'm so glad someone started this post... I just started yesturday... no changes yet...
but I really hoping this med provides drastic changes... I'm so tired of being so sick.
quote:
Originally posted by caveman:
I saw my LLMD yesterday. An interesting revelation were the results of my blood work, done 3 weeks after being on Ketek, along with doxy and Ceftin as I reported earlier. The numbers for my TSH (thyroid stimulating hormone) had increased considerably. For comparison, my TSH was 2.273 in June 2003, 2.750 on June 15, 2004, and now 5.908 on Sept. 7, after being on Ketek for just over 3 weeks. The acceptable range is supposedly 0.350-5.500.I was told that correcting my TSH could bring about an increase in energy. Therefore, I'm wondering if other Ketek users, all of which seem to be reporting ongoing fatigue, could also have had changes in their thyroid function?
Any of you have any personal medical data on this possibility, or not? -Caveman
Unfortunately, by the end of the 4th month I developed a really severe headache (back of head, like a dog squeezing my head) that would not go away. And my uncontrolled, embarassing weepy talking came back
Off ketek for 2 weeks, old symptoms are back. LLMD put me on tini and ceftin...so far, headache is less but weepy and dizzy still around.
I would like to go back on ketek. I think it was strong, but did the job. LLMD thought I had plateaued.
Good luck with ketek. This thread should keep going....
(My family Doctor wants me on IV. Do you think IV is good after orals? I will ask this question again in a new post tommorow. )
Welp. Looks like day 9 is time for the herx for me.
Started feeling "back to normal" bad yesterday. Now I'm achy all over, freezing cold and nausiated. Have had a pretty constant headache throughout and I'm somewhat bleary eyed and kinda dizzy. Had some word finding problems yesterday and some dislexia today.
I haven't been taking my SAM-e and I don't have any with me. I hope this doesn't turn in to a neuropsychological herx. I hate them. I did cry a lot during the CMA awards last night and thought that was kind of strange. Country western tunes ARE sad though.
I guess I'll keep you posted on the long and short of it. Pray for short.
Thanks,
Corgilla
I've had an increase in leg pain, but I think that's from physical therapy. And it's nothing near a herx type pain.
Just got a report from my LLMD that my CD-57 is at 16.....JEESH! I was at zero last March, but I was certainly hoping for higher numbers after 7 monhts of Mepron/Zith/Ceftin & artemisinin. I guess I'm still pretty sick.....I honestly think I still have babs and that is part of the reason I feel so crappy since going off the old abx combo.
Gail
It helped me tremendously at first but now I seem to have plateau on it. My LLMD just added Cipro to it 2 weeks ago.
First 6 weeks felt pretty good - managed to do most chores and day to day stuff but then herxed like crazy. It was my first real experience of a herx since starting ABX oral in Feb '04. Wasn't sure if it was just all my old "pre treatment" Lyme state returning and assuming the abx were not working but when it cleared (a little for a couple days) - the ol' lightbulb went on that yup, that was a herx-o-rama.
I tolerated it well although headachey. It's so hard to tell what causes what - the Lyme or the treatment.
I'd like to go back on it for another 3 month course and see how it goes.
Been off it for a week I think... maybe 10 days, hard to remember *grin*. The smell, the petroleum scary chemical smell is gross, I feel like I'm taking poison. Which it is, I suppose. Flagyl melting before going down is a toss up in the gross department.
Fatigue and pain are to unmanageable levels right now - hasn't changed since the Ketek ran out. Have had "windows" of energy and less pain. I miss my life - it's all really hard. You all relate, I know.
I was the first one on Ketek from my pharmacy - they special ordered it. Had called Aventis before it came on the market to get a notice when it would be released. We're pioneers with this one so let's keep this thread going.
My next questions, which I'll use the search feature for first, is when is it best to consider IV and if that will make me better faster, to put it simply. The search is sometimes hard to get to the right links and hours can go by searching through posts to find one that matches my question. I digress.
I'll keep you posted on my progress. Let me say before going though that I never realized how seriously sick I am until that herx hit - it's now elevated from just taking extra pain meds on the days it's hard to try to function to a fight for my life. Pain never leaves me - some days I crawl on hands and forearms up the stairs, can't drive, fatigue that never goes away. My spirit has been challenged, to say the least.
I just have to hold on to the belief/hope that this "feeling worse before feeling better" is really and truly working.
My best wishes and heart felt compassion to you all,
StinkBug (aka Kathryn in Colton - not belly dancing these past few weeks and it breaks my heart)
http://flash.lymenet.org/ubb/Forum1/HTML/029236.html [This message has been edited by treepatrol (edited 16 November 2004).]
Anyone else notice interactions like this?
I've also had more lightheadedness. But I have to admit, I'm not always eating enough.
Still herxing on day 15. Had a brief let up last night.
It's getting to me mentally now. I didn't take Ceftin yesterday thinking stopping it would help out a little. I really don't want to stop the Ketek since it seems to be working. Not much does work for me so I don't want to do anything to have it lose effectiveness.
I'm in the wanting to give up stage again. I hope it passes soon. Missed work yesterday and Friday from pain and fatigue. I'm back in today and was able to work from home a bit yesterday.
This plain old stinks. I'm so sick of this disease.
OK, I'm off topic. Maybe I'll skip 1 or 2 days of Ketek and try to get back on track.
Has anyone else tried stopping and restarting? If so, did it continue to work the way it was before you stopped?
Thanks for listening,
Corgilla
not much else to say...
It's hard to say with so much going on, but on balance, I'd say I'm worse at this point rather than better. May be a long term herx? Before starting these two abx, I had mostly arthritis and muscle and tendon pain, not so much neuro stuff. Joint pain has improved in some areas (hips) but gotten worse in others (knees). Lots of new or increased neuro symptoms, i.e., brain fog, memory lapses, nerve pain, increased tingling and ear ringing.
Still not giving up on these .... though I have to say, I'm struggling to keep a sunny disposition right now 
monkeyshines
Brought me two steps forward in regard to brain, function and performance.
I am now on Rulid + TMP, which took me one step back again. Maybe herxing.
Gabrielle
The last 2 weeks I have been feeling well. The best I have felt in almost a year.
The only complaint I have about ketek is yeast infection. No matter what I do, I cannot control the yeast. I didn't have this problem on any of the other antibiotics I have been on in the past.
Anyone else experiencing unusual yeast problems?
Ketek didn't increase my yeast problem. In the contrary, I could cheat quite a lot with my diet.
Gabrielle
I plan to come off the Ketek today as I want to hit it again perhaps next month around my usual monthly cycle(that the ducks "know does'nt exist"}...
Have not had a yeast problem but am doing my probiotics...stomach probs have been handled by OTC tagamet...
I don't know if this abx is right for all but I seem to be having some good results with it even though I had some initial concerns....
Please don't write back and warn me about the dangers of overdoseing on Ketek....I've been so sick for so long I really don't care...I am however monitoring my liver enzymes........sooo...not to worry too much..............good luck all.......zman
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Walnut, my yeast symptoms are basically gone since starting Ketek. Maybe the yeast problem started prior to Ketek, but wasn't obvious until Ketek?
In addition, Bactrim was also added and I am continuing with rocephin injections so to switch to Primoxin IV.
My son has been on it for 6 weeks, and he has been having major herxs as well. Hope to get over the hump soon.
I'm on Ketek 800 mg, omnicef, samento, bicillin IM 2.4 IUs every 5 days. Lots of probiotics. Been on bicillin 11 months. Started the samento and omnicef about 2 weeks before the Ketek. Been on Ketek for 2 weeks.
On the first week of Ketek, some stomach pain. About the 10th day, stiff and weak neck, which I haven't had for a long time and which was always one of my relapse indicators. Arms very tired and weak and achey. No joint pain.Overall, quite tired and very weepy.
The worst of it wasn't terrible, and lasted about 4 days -- today isn't so bad, but I'm frustrated by the tiredness and weepiness.
[This message has been edited by minoucat (edited 02 February 2005).]
Interesting that this topic comes back to the top today.
I have just been through the scariest thing that's ever happened to me.
I have been taking Ketek 800mg once a day since Nov 1, 2004.
I had my LLMD appointment on Dec 27 and was told to add in minocycline 100mg bid.
I tried a bunch of times to add it in and would end up feeling really sick really fast.
Two Fridays ago, I looked at my hands and they looked yellow. Not thinking too much of it, I decided to knock off the abx for the weekend and all was fine.
On Monday, I decided I was going to go all out and no matter how bad I felt I was going to push through the pain and take my abx exactly how they've been rx'd.
On Thursday, I felt like I was almost dead but got through work somehow.
On Friday am, I was trying to get ready for work again and just couldn't do it. I looked over at my bed and could not resist laying down. After that, I couldn't move for 45 minutes. Not an arm, leg, finger or toe would move.
All this time, I'd been having an acid refluxy kind of pills-stuck-in-the-throat feeling. On Friday night, I thought my heart rate was fast so I took my pulse.
To my astonishment, my heart was stopping and then refiring at very short intervals. My heartrate (not including the missed beats) was 65-70 bmp - ie normal.
Along with all of this, I had weakness, shortness of breath, dizzyness and a fluttering in my chest every time my heart started back up.
I haven't had any abx since Friday at 3pm.
LLMD said that I should stop abx and if it continues after 48 hours see my primary physician for a Holter monitor otherwise start back slowly on Minocin and leave out the Ketek.
It didn't stop by Monday so I saw primary physician (who also has and treats Lyme). He gave me rx for proton pump inhibitor and nitroglycerine and said that when I feel better I should start back on the Ketek 400mg once a day.
He claims that it's obviously the minocycline that caused the heart problems. He also said that no one has ever died from their heart skipping beats.
He took lots of blood tests too. Results aren't back yet.
So, as of yesterday afternoon, I haven't been able to catch my heart skipping beats although I've had shortness of breath, dizzyness and chest pains.
I have no idea what to make of this episode. Anyone else have any comments?
Thanks,
Corgilla
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I have been on it for a year now.
It gave me a MAJOR herx. I might be having chronic symptoms from it but im not sure.
I stopped it twice for a month at a time and each time I got worse and worse.
I have to get my QT interval measured first to see if it is normal, as if it is too long then I can't take Ketek.
Ketek has many interactions & my LLMD hands out a sheet of info about what you can't take with it. Seemingly even Zolpidem (sleeping tablet) increases its effects so I have just to take half a 5mg tablet when needed.
Emma
quote:
Originally posted by Horseplay:
does anyone know about Ketek's interaction with Xanac? My LLMD wants me to start Ketek but I take low dose xanax 3 times a day. I have not started it because I read that it interacts - tried to contact him but have not heard back. Am still taking Tindamax and Bicillin LA. Any info or a lead in the right direction would be good?
Sadly, neither was the 'magic bullet' I was hoping for, and I'm pretty much back where I started, if not worse (lots more neuropathy and fatigue). Now I'm looking at babs and am on ketek and artemesia, possibly starting mepron next week.
monkeyshines
2 months in I had bad palpatations, LLMD recommended MagTab and that seemed to work
Experienced a big herx at month 5 but that seems to have calmed down
so far so good, I'm hoping it continues!
Good luck
Sue
I have a concern. My son was put on Ketek and cat's claw (prima una de gato) together and I just read a printout that they should not be used together.
Does anyone know anything about this?
Thanks.
I am not trying to outthink your LLMD, but so often they just don't realize that our bodies can't take such a strong assault at one time.
The Cat's Claw is very powerful and people herx on it pretty quickly, even with one drop.
You need to start slowly so you can differentiate between whether it's the abx or the Cat's Claw if there are any problems.
Hope things work out, God bless.
DLL
She is back on her ceftin/flagyl and doing well again.
I have been on it 6 weeks now. I have had so many good days in this time, I almost can't believe how good it's going. I have had no side effects or adverse reactions and I have only had mild herxes/or short lived.
Right now I am going through either a herx (even though on weekends I don't take Ketek and still felt ill), but that might be the 3-4 weeks cycle of feeling a bit worse.
So, I have nothing other than positive feeligns about Ketek.
DLL
Thanks,
john
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Thanks,
Rick
quote:
Originally posted by morningnewsman:
I've been on Ketek for 45 days or so. It seems that every night, about an hour after I take it, my vision gets blurry and my head gets pressure and pain sensations...
I'm also getting really blurry vision. My doctor and I are trying decide if the increased pain, sore throat, blurry vision, brain fog, and fatigue are from the ketek, a herx, or both. I have been taking the cat's claw as well as artemensia...and minocycline. I just stopped hydroxychlorquine a couple days ago to see if that would make things better. As yet I'm still feeling all these bad symptoms...I'm at day 14 I believe. The pain is increasing as are the blurred vision and brain fog and it happens especially in late afternoon through evening.
So I am going to alter the time I take the ketek to see if that helps. I may start the hydroxy.. again and see if that helps or harms.
My sore throat today was actually pretty severe by mid afternoon. Usually that's a sign of my herx.
I'm not sure what I want to do. I had been having good results with the zithromax but I had hit a plateau with it. So it seemed appropriate to swap to something else and see if it would continue to kill things. I was of course rather hoping that everything was dead. But it's unclear now what's going on.
and man the melted plastic taste of the ketek is not good. ew!
depressing the last week has been really bad.
I have more good days, more stamina, but still get fatigued though recover quicker. I haven't felt this 'good' for a long time.
DLL