posted
I've been taking Ketek for the last couple of weeks. My doc switched me to it PER MY REQUEST and he started me out on 1/4 tablet/day.
I felt really badly on it at first, so I switched to taking 1/8th tablet every other day and then finally titered back up to 1/4 tablet this last Saturday. (I was actually starting to LIKE Ketek!!)
On Sunday evening, prior to reading all the recent broo-ha-ha about Ketek, I experienced a very disturbing episode.
I was watching a movie & knitting when all of a sudden I became extremely quesy, dizzy, and I then broke out in a cold, clammy sweat from head to toe and thought for certain that I was about to pass out.
I got up & managed to get my blood pressure machine - which indicated that my bp was just slightly elevated and my heart was racing a bit (96 pulse) - and I had not been doing that ever popular aerobic knitting as some of you may suspect -- so whatever was happening with me was causing my vital signs to spike a bit.
For awhile I was thinking I needed to call 911 - as those of you who know me, realize I do SO like to look at the hunky paramedics -- but d*mn it, once again, I wasn't wearing clean undies and wasn't in the mood to being hooked up to IV's and probed for hours on end.
I woke up my hubby so he could make the decision in case I passed out...or went into a freaking coma or something, and within a few minutes, my little 'episode' subsided and I just decided I wasn't going to die that night & I went on to bed.
I talked with another Lymie friend the next day - and she said that is the main way she herxes while on Ketek. (It occured to me that perhaps she had told me that before and that I just never really 'heard' what she was saying with regards to the severity of the symptoms - however, brief. So I learned that I apparently suck as a listener.)
Anyway - just wondered if any others of you have had similar herxes on this stuff?
Also - since starting it - my eyes have been watering like crazy -- an entirely NEW symptom! Does anyone know if Ketek crosses the blood/brain barrier & if it's killing off all my brain keets & that's why my eyes are watering??
Thanks in advance for sharing your experiences!
Hugs &
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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posted
I have to wonder if you're even getting therapeutic levels of Ketek in your blood, taking such a low dose as you are.
I've had herxes since being on Ketek, none quite like what you describe. I had more cardiac symptoms before I started abx, and for the most part, any cardiac symptoms seem to have disappeared. But with respect to herx symptoms, I think they can be as varied as there are people w/LD.
I would really suspect that on such a low dose as you're taking, your blood levels of Ketek are'nt high enough to be effective and what you're feeling are simply Lyme symptoms. Be careful about taking too little of your abx. The low levels of drug in your body might have more of a tendancy to lead to resistant strains of bacteria rather than killing them.
As for the negative reports about Ketek recently, read some of the other specific threads on Ketek. Many drugs, including Tylenol can be hepatotoxic and can cause death by liver failure. Ketek has been used successfully and w/o problem in thousands of patients by the famous Dr. B. However, you should monitor your liver function regularly and do what you can to help protect your liver against the toxic effects by taking proper supplements, i.e., milk thistle and ALA.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Hi,
I have had herxing from the dosage this person is taking. I had to start off with 1/4 table like Wiseass and work up. I was on the Biaxin when I did this not Ketek.
I tried the higher dosage and it was too much, would have killed me. I am extremely or was extremly toxic with lyme, now on babesia meds, and had to do 1/4 cap of clindamycin and quinine and work up. I went higher too soon, near died, from breathing collapse. My body could not keep up with the lung or throat herxing.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
I had a similar reaction to Cipro during the first few weeks. The first time after passing out with sweats, I stopped taking it and was switched to Doxy. When Doxy stopped working a year later, I went back on the Cipro, had the same reaction again the first couple weeks. Continued taking it and my body adjusted to it. Still take it - it's gotten rid of my kidney infection and I should be in the clear from that in another month.
Ketek I did not react to that way. I'm on 800mg once a day - that's two whole tablets. It's helping with the lyme. I herx on a monthly cycle with increase lyme symptoms for several days, then I improve. I'm hoping to continue to do so, as I'm getting stronger.
I think it's partly that different people react differently to the various antibiotics. Some will work, some will make you sick. I can't even take Sulfa (bactrim), I had a major allergic reaction to it.
Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Ive had these symptoms but I am not on Ketek. They can be very frightenin! I would go stone cold, have a kinda cold sweat and my heart would race. It creeps me out! It could just be a part of the Lyme but it almost sounds like a herx to me. I would check with your LLMD and make sure though!
BTW, I firmly believe that some people do indeed herx on very low doses of medication!! I too am extremely sensitive to meds and even the lowest amounts can affect me.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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posted
Hey Dr. WA! glad to hear from you just sorry it was because you were feeing poorly. I always love to read your posts. Even when feeling badly your posts make me laugh. (not to be disrespectful or uncaring mind you.)
I get this kind of palpitations along with air hunger whenever I switch to a new ABX. pattiecake
Posts: 687 | From PA | Registered: Oct 2004
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi all-
I took Ketek for about 1 month no bad effect -- I took full dose 2x400 together
--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
I take Ketek, 400 mg 1x/day for the last month, it is my first treatment so I have nothing to compare it to. Some symptoms have gotten worse and some have gotten better.
Lyme is such a fun roller coaster.
Your writing is entertaining even while describing such a horrible experience.
I hope this doesn't continue!
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
This same reaction happened to me several times.
I found out down the road it may have been low blood suagr.-Same exact symptoms as low blood suagr.
It could be a herx but I would ask your doctor if it could be low blood sugar.Sometimes on meds it can screw with your glucose levels.
Maybe next time you might want to try and eat some crackers or something.I know it's hard when you are queasy.
Take care
make sure to talk over evrything forst with your LLMD
posted
What I'm learning is that LD is a very complex illness. So maybe it's possible that one's infection w/Bb could be that sensitive to abx therapy, even though it runs counter to what I learned about abx therapy when I was in pharmacy school (that was a while back...).
However, Dana does make a good point that should be considered if it hadn't already. On re-reading Dr. Wiseass' symptoms, they do sound like low blood sugar symptoms. I've had low blood sugar a number of times too, and that's exactly how it makes me feel. So that would be a possibility to rule out as the culprit, along with whatever else you might be concerned about.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Dr Wiseass My doc switched me to it PER MY REQUEST and he started me out on 1/4 tablet/day.
I felt really badly on it at first, so I switched to taking 1/8th tablet every other day and then finally titered back up to 1/4 tablet this last Saturday. (I was actually starting to LIKE Ketek!!)
Ketek is time release I dont know if cutting them will effect that?? to much too little?
What side effects may I notice from taking telithromycin? Side effects that you should report to your prescriber or health care professional as soon as possible: *difficulty breathing *fainting spells *jaundice (yellowing of the skin and/or eyes) *redness, blistering, peeling or loosening of the skin, including inside the mouth *severe or watery diarrhea or persistent diarrhea *skin rash, itching *swelling of tongue or throat *vomiting
Side effects that usually do not require medical attention (report to your prescriber or health care professional if they continue or are bothersome): *diarrhea *dizziness *headache *nausea *vision problems such as blurred vision, difficulty focusing, and objects doubled
Tell your prescriber or health care professional about all other medicines that you are taking, including non-prescription medicines, nutritional supplements, or herbal products. Also tell your prescriber or health care professional if you are a frequent user of drinks with caffeine or alcohol, if you smoke, or if you use illegal drugs. These may affect the way your medicine works. Check with your health care professional before stopping or starting any of your medicines.
What should my health care professional know before I take telithromycin? (Back to top) They need to know if you have any of these conditions: *diarrhea *heart disease *irregular heart beat or abnormal heart beat *kidney disease *liver disease *low blood potassium (hypokalemia) or magnesium (hypomagnesemia) *myasthenia gravis *stomach problems (especially colitis) *other chronic illness *taking cisapride (Propulsid�), pimozide (Orap�), or certain medicines known as antiarrhythmics (such as quinidine, procainamide, or dofetilide) *an unusual or allergic reaction to telithromycin or macrolide antibiotics (such as erythromycin, azithromycin, clarithromycin, or dirithromycin), foods, dyes, or preservatives *pregnant or trying to get pregnant *breast-feeding
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I only took Ketek for 3 weeks at 800mg per day. I had no noticeable reaction to it, not even an increase in symptoms.
My heart was fine when examined by the LLMD who prescribed the Ketek. Yesterday I was at the rheumatologist (referred by the LLMD to rule out RA since my bloodwork showed an elevated RA factor) and he (rheumy) said I have a slight heart murmer.
The LLMD wanted me to do bloodwork while on Ketek because he was concerned about heart and liver damage. I'm trying not to think about this, but I am worried the Ketek may have caused a problem.
CVS pharmacy always gives a writeup with their drugs that include possible side effects. Dry mouth and eyes is a possible side effect, but watery eyes is not listed.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
Thank you all for your interestiing responses.
I have an appt. tomorrow with my LLMD and I'm sure we will be discussing all things Ketek... ad naseum!
Thanks Tree for the list of cautions & such - I did go to the Ketek site & read as much of their 'fine print' stuff that I could stomach. What I did read, and must REMIND my doc is that I am on some meds that the Ketek people said to "TELL YOUR DOCTOR IF YOU ARE TAKING...."
Of course my doc is the one that PRESCRIBED all of those meds...but dang it...once again, I must remind myself that my doc is just a human being, capable of forgetting such trivialities... (And it's only considered 'trivial' to me at this point because I am not dead or in the I.C.U.)
As far as the glucose thing -- THANK YOU THANK YOU for that suggestion!
My Lymie friend that is also on Ketek IS diabetic and is having some problems with her glucose levels -- SO perhaps some of HER episodes are diabetic/hypoglycemic episodes (I get those two mixed up...)
So if Ketek is messing with her glucose levels....I DO NOT want Ketek to turn me into a diabetic. I know this will SHOCK some of you because you all know I am a 'good' well-behaved Lymie girl - but I ocassionally like to sneak a tiny bit of sugar into my diet. (LOOK! The world's BIGGEST understatement!!!)
I'm actually hoping that it's just a herx so that, ironically, I CAN stay on it because I have felt better on Ketek than I have on the Mepron/Zith combo - despite my need to only take the dose that would be effective for a goldfish.
It is so good to 'interact' with you all again - I HAVE missed you guys/dolls....just trying to recover from the HoliDAZE that almost killed me...but that's another story.
Hugs &
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I've been taking Ketek since 2/28/05; 800mg daily taken at once.
Have been herxing like crazy from it, but not as you describe. My herxes involve my joints - primarily my right knee. Also plain old exhaustion and weakness.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
Day five on Ketek and am not herxing like when I was on Biaxin and Omnicef. However, I am only taking 400 mg a day right now.
I am starting to feel join pain in my right knee, neck stiffness, back muscle stiffness/pain and forearms are burning when typing.
These are the same herx symptoms I had before but on a smaller scale. Will see how it goes.
Posts: 331 | From virginia | Registered: Nov 2005
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I am going to restart the Ketek back at 1/8th a tab daily...and very slowly work up to 1/4th tab.
And YES, my doc does feel that pediatric doses are best for some of us as too much of a massive die off too quickly might just send some of us to the I.C.U. or the cemetary - just so y'all know.
My doc believes I was having a major herx with the symptoms mentioned earlier - but that I should contact him if I herx like that again as I might need to have my bp meds changed.
He took vials and vials of blood and I have no doubt he will keep a close eye on my liver enzymes, et al...
All my best to my fellow ketek-ers!
Thanks again for all your replies.
Hugs &
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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posted
Wise, How much do you weigh? I am on 400 mg per day and haven't felt nearly as much herx as on the double doses of Biaxin and Omnicef. I weigh 118 and was wondering how you compared so I can judge my dosage. I take half pills of some things (Flexeril) because of the effect. Thanks.
Posts: 331 | From virginia | Registered: Nov 2005
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JimBoB
Unregistered
posted
Mizmo: Be careful about taking Cipro for any length of time as many have LOST their colons from it. Its a killer, not only of the spirochetes.
I took it for 24 days the last time, but I had already lost my colon so couldn't get colitus from it.
My own GP who prescribed it for me, had two women who he prescribed it to, lose their colons.
posted
Queasy, dizzy, cold clammy sweat, feeling like you are about to pass out, yes, all happened to me one night but in my case my pulse went way, way down and I was white, absolutely deathly white, it's a horrible scary feeling isn't it?
At the time I was on doxycycline and roxithromycin though so I agree with others who say it was probably a herx, not the ketek itself.
Despite the herx though I haven't seen any progress on doxy/roxi so my doc is switching me to ketek next week and he is recommending that same dose of 1/4 tablet a day to start, mainly because I am very sick right now and he too thinks massive die-off is not the best way to go!
Can I ask you what good effects you have had from ketek? It sounds like it really suits you if such a low dose is causing a reaction, it must be so encouraging to find an effective treatment in this maze of dead-ends where we find ourselves.
Hope you don't get the cold clammies again but please keep posting about your progress, I'm right behind you and hoping for a lead out of the maze.
Happy days!
Posts: 51 | From England | Registered: Oct 2005
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posted
OK First - to VAChick -- You asking me how much I weigh....I almost spit my beverage out on my keyboard! Don't you know you're not supposed to ask a lady how much she weighs?
Oh, I get it - you don't think me much of a lady, huh?
Yes, I know - not many of you DO think me much of a lady - but who asked YOU?!!!
VA darlin' - I vaguely remember being in the 118 range - over a decade or more. Without divulging my EVER-INCREASING weight - I will say that I could probably snap you like a twig -- not that I would, dear.
You can't judge how much you would need of any particular abx based on how one fat or skinnyass person took because we all have different concentrations of the Bb.
As I understand it, Ketek works on the cyst & the naked cell wall form -- NOT the spirochetes (yes, I could be wrong about that)...so the fact that I have had some significant herxing implies to me that I have significant colonies of cysts & naked things coursing through my beautiful large body!
You may have more spirochetes. Your 'load' may be different.
ALSO - I just remembered ((lymebrain)) -- my LLMD thinks that my whole cold, sweaty "I think I'm gonna pass out" momoment could have been a "cardiac herx".
Yes, that's what he called it. Never heard it put that way before - but it makes sense if I have some critters in my cardiac muscle -- then when they die - I shall have herxing -- hence, the very scary term: "cardiac herxing".
Things that make you go..."Hmmmm........"
Now Elinor -- noticed you're from England - and what a lucky gal you are to find someone willing to treat you!
Anyhoo - about the 'good' effects of Ketek. For me, I feel A LOT more functional -- you know, when I don't feel like I'm about to go into some kind of cardiac arrest & DIE!!!!!
Geez this is a fascinating disease - ain't it?
Right now - I have stopped - once agaiin - taking the Ketek for a bit because I am apparently suffering from some cruel, cruel virus - along with my theory that I am extremely toxic right now. It's a two-for-one special!
I do not have a pain pill in my house right now that can touch the migraine I have which the fact that I am playing on this BRIGHT LIGHT BOX called a computer is simply because I need the diversion from the migraine, the nausea, the big D, the occasional chest wall pain which I believe is being caused from the fact that I need a massage therapist to come and work on me for about 5 hours.
(Note - I do not need a massage therapist to work on my chest but to work on my BACK where all my nerves are apparently TRAPPED and possibly impiinged under all my tight, spasming muscles! Some of you people and your filthy minds....)
OK, if anyone knows how to dim the light on my computer...oh, never mind I shall find my sunglasses.
Hugs & very distant because I am SICK SICK SICK
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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liz28
Unregistered
posted
I got that from taking the 800mg all at once, and yes, it was scary.
Breaking up the doses into 400mg/2x day, it has been a terrific abx. But it does hit fast--my first big herx started one day after starting the drug.
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nausea, the big D, the occasional chest wall pain which I believe is being caused from the fact that I need a massage therapist to come and work on me for about 5 hours. ![[toilet]](graemlins/toilet.gif)
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