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.

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

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

I hope you continue to improve.

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.

Interesting to hear how others are doing. Best to everyone!

karen

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?

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.

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.

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..

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.

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.

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

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!

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,

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,

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,

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'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.

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

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.

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,

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!)

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....

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,

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.