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.

Anyone else notice interactions like this?

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,

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

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.

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.

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

In addition, Bactrim was also added and I am continuing with rocephin injections so to switch to Primoxin IV.

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.

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,

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 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.

quote:

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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?

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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.

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!

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?

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.

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.

Thanks,

quote:

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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...

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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.

I have more good days, more stamina, but still get fatigued though recover quicker. I haven't felt this 'good' for a long time.