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» LymeNet Flash » Questions and Discussion » Medical Questions » Ketek buddies (Page 2)

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Author Topic: Ketek buddies
Kara Tyson
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Dont, that's ok. I have certainly been called worse! But usually adults here part of my name then just assume it is Karen.
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lou
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I had an interesting experience with ketek and septra. After being on this combo a couple of weeks, I stopped and then took some tinidazole by itself. For the first time in years, there was a noticeable reaction. My take is that the abx forced the creation of cysts which were then smacked by the tini.

No other combo with ketek did this.

What I can't figure out is whether cyst formation is a good thing or not. Maybe some meds kill without causing cysts.


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lucy
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I am supposed to be starting on Ketek and Omnicef this week. This is to include the Hydrochloroquine and Nystatin I'm already on.
Anyone tried this combination? Also, has anyone tried Samento liquid? It's supposed to be a powerful immune booster and there was a test study done in which it sounded like all lyme participent had really good results.

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griswoldgirl
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*****before you read this please know this was my experience and the words of a renouned liver transplant doctor. It does not mean that this will happen to you*****

just food for thought. I have chronic lyme and was treated with 8 months iv abx and then put on 600mg leviquin and 800 ketek for 3 months--I now have NASH and higher enzymnes with each test on my liver every 2 months and I have been off antibiotics since May due to my liver disease--fun fun--lyme creeping back symptom by syptom.

the guy handling my liver health is a transplant specialist and very knowlegable and says that ketek is like poison to the liver in some people. He feels that unlike other allergic reactions there are those of us that react with harm to liver cells. He has had 2 cases in which people have been on a 10 day course of this abx and have gone into liver failure with NO previous liver problems.

It is realitively a new antibiotic and I am highly skeptical of it--I am living with liver disease that did not exist 3 years ago--my liver was as pretty as a picture--I am an ultrasound technologist and the difference in appearance of my liver in the last two years since treatment is very scary.

If it is working well for you--great/ If your enzymes continue to climb, if it were me I would request and ultrasound or CT of your liver. I knew better and waited to long and might be looking at a transplant in my future--that is if I could get one with my lyme disease--who knows in the next few years what they will find out about this disease--more pops up every day

cathy


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dontlikeliver
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Cathy,

I am sorry to read this and also of course scared to death now.

Did your liver enzymes climb gradually? I have mine every 3 weeks, do you think that is enough? (all have been fine).

Is this unique for Ketek, or do other abx like Biaxin have gthe potential for quick liver failure?

Thanks

DLL


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dontlikeliver
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Cathy,

I just noticed on your other thread that you said you were on 3 times the normal dose of Ketek - do you mean you were taking six Ketek pills a day (instead of the normal 2)? Please clarify if you see this. Thanks.

DLL

[This message has been edited by dontlikeliver (edited 26 August 2005).]


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lou
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I am puzzled that ketek would cause such liver damage when macrolides, such as zithromax and biaxin, apparently do not, and these are all similar drugs.

Wonder if it is one of those unpredictable responses that some people get with other drugs too. Like the one I had with remeron, which sent my liver enzymes into the stratosphere. They gradually came down, and with the help of milk thistle, are OK now. I did stop taking the drug too.

Of course, it is true that new drugs can be found to have previously unknown side effects when they are used in much larger population than during the clinical trials.

[This message has been edited by lou (edited 26 August 2005).]


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liz28
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You cannot, under any circumstances, take levaquin and ketek at the same time. I don't need to be a doctor to say that.

In other posts, I've listed some heavy drug combinations that have saved my life. But I did so 1) knowing the risks, 2) taking handfuls of liver support, 3) staying away from levaquin. I did try levaquin at one point, and experienced severe side effects within two months. Also, 800mg ketek in one dose is too strong for many people. Some see positive results with just 400mg per day.

Here is all the liver support I currently take: phosphatidylcholine/lecithin, Dr. Zhang's hepa formula 2 (active ingredient=schisandra), milk thistle, N-acetyl choline (NAC), broken cell wall chlorella, the vitamin Bs. You can also take alpha lipoic acid.

Also, Dr. B lists CoQ10 as REQUIRED if you are not on mepron, with which CoQ10 interacts. CoQ10 is an antioxidant, but it can help protect the liver as well.


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lou
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Here is what the technical sheet on this drug says about adverse reactions related to liver:

"Liver and biliary system: abnormal liver function tests: increased transaminases, increased liver enzymes (e.g., ALT, AST) were usually asymptomatic and reversible. ALT elevations above 3 times the upper limit of normal were observed in 1.6%, and 1.7% of patients treated
with KETEK and comparators, respectively. Hepatitis, with or without jaundice, occurred in 0.07% of patients treated with KETEK, and was reversible. (See PRECAUTIONS, General.)'

Get the whole shebang at:
http://www.aventispharma-us.com/PIs/ketek_TXT.html#


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tjtighe
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Hi Ketek buddies. Sure wish I was having your type of successes. Took 800mg at nighttime and it took one day to get a horrible headache that just wouldn't quit unless I doped myself and lied perfectly still on the bed. After tolerating it for 3 weeks, I stopped for 5 days. LLMD told me to go to 400mg. which I have for the past 3 weeks and 3 days. The headaches are the same if not worse. Added Omnicef 150mg am and pm and for 4 1/2 days. That drained me totally of energy and spirit, so I stopped that. Hope to add it in again this evening. Sometimes meds work better the second time around.

Writing this with a TERRIBLE headache that has me in tears. Can only handle sooo much. I have been in treatment for 1 1/2 years and am worse. I knew I would have very bad times, but I can count on one hand the number of days that I can call half good. Maybe I am expecting too much too soon. Had this #$%$# disease for 25 years before dx...also Babesia and Erlichiosis. The only thing is I know people who have been ill a very long time and definitely doing better than I am by now.

A depressed and rather desperate

tj


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dontlikeliver
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Well, I am nearly 4 months into Ketek and have been doing well, good improvements, esp in alertness and stamina.

Have not had what I would call noticable herxing - meaning only mild so that it's not been any worse than when I have my usual sx that come and go about every 3-4 weeks (chills, low-grade temp, headache).

However, I started another thread today about my new skin (pimples on face) problem, and also that I have been feeling more run down for about 10 days or so, with sore throats/ear that is persisting.

But then, VERY SUDDENLY, in the last 2 hours I got sudden diarrhea, which I thought was a one-time thing. I wasn't doing too badly before that today. I am now also nauseous and feel shaky/weak and my heart is going quicker than normal..

Stomach bug? Antibiotic related (just opened new jar, see below)? Sudden herx?

The one thing I did different today was, I opened a brand new jar of Ketek and took that instead of the other one I've been taking........simply because (silly me) I had read recently about pharmacies (legitimate good ones) getting coungterfeit drugs, without their knowledge, and I wondered if my recent BAD skin and slight worsening/sore throats, was due to maybe having 'fake' Ketek and that 'nothign was happening', no bug-killing going on.

So, 1 hour after taking the Ketek from the new jar I start with diarrhea and a little later nausea.....am I just adding up 2 and 2 and getting 5???

I am so confused by how I am feeling right now, and by the fact I've been feeling run down for more days than my usual monthly run-down time, PLUS the fact I've been getting zits, which you're not supposed to get on antibiotics, and which I have not had for over a year....

OR, is it liver related (oh yeah, Griswoldgirl's post above has scared me a lot, so now that I got sudden diarrhea, nausea,and feeling bad, I wonder about this too). One should not look up the symptoms of sudden liver failure on the internet, bad bad bad!!! [Wink] I looked it up and it lists: nausea, diarrhea, fatigue, weakness.

Can you SUDDENLY get a bad sudden herx on Ketek several months in????

Any insight would be appreciated. Confused and driving myself crazy imagining terrible liver-related things.

DLL

[ 05. September 2005, 01:33 PM: Message edited by: dontlikeliver ]

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dontlikeliver
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OK, how are all the Ketek buddies doing these days? It's been a while since there have been updates to this thread.

DLL

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kmr5861
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I have been on ketek since april and am doing good. I did have a terriable bout in october - november. I came down with colstrum, so I had to stop taking ketek and take vaconim (sp)

Also they found a gall stone so my gall bladder was removed in November.

I have felt so much better, I'm just scared I will get sick again. I'm on ketek, the dr is running a couple test to see if she needs to add 2nd abx, hopefully not.

I'm tired of taking all those pills.

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mountainmoma
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I've been taking ketex pulsed, two weeks on and then 2 weeks off for a while, I think since September. I take omnicef everyday. I take all the ketex at once in the morning, because it's ok to do so and other antibiotics have given me sleep trouble when taken at night. The first day or two Im alittle dizzy for a while after taking it, but then that stops (I dont weigh much). I dont have any sleep problems.

I think it makes me feel better and was wondering if I should ask my LLMD why we pulse it instead of taking it always. I do have trouble fighting off candida in general, dont notice it worse with this, but maybe that's why. I was taking Flagyl for the same two weeks, but now Im supposed to do artimisinin instead of flagyl.

I take diflucan, often daily, I had forgotten if I could take it with Ketex, so hadnt taken any this week, and now that Ive read this thread, I will take some again.

I couldnt find artimisinin, so I am currently taking artimisia tincture,10 drops 2 or 3 times a day until my internet order arrives.

I think I have been getting better on this, but right now Im a bit out of it, Im a single mom with three kids and the holidays are more than tiring.

I had been having luck using host defense to keep my monthly cold sore breakouts at bay, but it couldnt cut it this holiday month ! They came anyway and early to boot, so Im taking acyclovar too.

I dont think I understand why it would stop working ? Is it because all the bacteria arent killed and the survivers become resistant ?

Are any of you doing vit C/Salt ? I am considering adding this as I dont think it stops working.

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luvs2ride
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i started my treatment homeopathically for 3 mths before switching to ketek.

i'm one week into ketek @ 800 mgs daily. in beginning, herxing with homeopath was extreme and by end of 3 mths much more tolerable. there was a one month break before starting abx during which time i felt much better, nearly painfree. now i am increasing pain again but to much lesser degree.

i think the homeopath was doing quite well on its own. it is certainly much safer than the ketek which so far i am tolerating well. dr has me on a 30 day supply. i will stick with it that long but then want to go back to homeopathy. i just don't trust the longterm use of these drugs and certainly don't see where i am getting any additional benefit from it. i was on flagyl too but very quickly had an allergic reaction to it. so dr says no cyst busting drugs for me.

--------------------
When the Power of Love overcomes the Love of Power, there will be Peace.

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dontlikeliver
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Thanks for responding.

I am about to restart Ketek again afgter having to take two breaks since September.

While I was on it for several months though, I had good improvement on it.

DLL

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treepatrol
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Sorry I started another thread I searched and searched then after I posted mine I found this one Oh well.
Heres My new thread:

Ketek Experiences

I started 0n 1/18/06
Mgs 400 twice a day = total 800mg daily.
Ill update when notice reactions of any kind.
Anybody Ketek Experiences

--------------------
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.

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psano
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I've been on Ketek 400mg twice a day since the middle of Sept 2005. Bicillin 1.2mu once a week was added Oct 2005. Had to stop abx late Nov due to elevated liver enzymes. Started taking milk thistle and alpha lipoic acid and my enzymes came back down. Started back on Ketek and Bicillin as before and 2 wks later my enzymes were still the same. Just had my blood drawn yesterday. Hoping the enzymes are still within normal limits.

I've been improving slowly. I have more stamina now and generally decreased symptoms. I haven't had any significant problems otherwise.

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AZURE WISH
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up for crazychris

[ 26. March 2006, 09:24 PM: Message edited by: AZURE WISH ]

--------------------
multiple chemical sensitvity group:
http://www.lymefriends.com/group/multiplechemicalsensitivities

Group for artists. All media welcome:
http://www.lymefriends.com/group/creativecorner


http://groups.yahoo.com/group/Lyme_Artist

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lucy96734
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I've been taking Ketek since December. I started with 2 weeks of 400mg 1/day and now 2/day. I am waiting for my Mepron to arrive from Candadrugs.com.

I have found that the Ketek really helped with my joint pain. My nerve pain has been up and down as has the fatigue and general feeling yucky- like you are about to get a terrible cold but don't.

I am hopeful that treating the Babs will help.

Thankfully I haven't had any yeast, liver elevation or tummy problems.

--------------------
Lucy

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mountainmoma
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Im still on it pulsed. Right now on day 4 of my 2 week cycle. I wish I knew what my liver numbers were. I do test it once a month, but havent seen the report since decembers, which was slightly elevated.

Im herxing, not a great day, but Ive had worse. Joint pain, close to crying in the post office, etc.. so I went in a sauna hoping it would help detox.

Besides the Ketex, I take omnicef and an upped amount of artimisinin, 3 200mg twice a day, and I have been playing around with a loaned rife machine. So, no wonder my joints ache and it hurts to carry my purse on my shoulder and to raise my arm high enough to try and tape a package closed at the post office...

Seeing this thread going agian would remind me to call my LLMD about liver numbers, but we have no phone--10 days now. California SBC phone company thinks that 2 weeks is fine to be without a phone and wait for a repair !!!

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