posted
Hi - Had heard good things about it but my son got bad headaches from it, took him off it for now but his LLMD says he wants to try it again later in his treatment. Good luck.
Posts: 448 | From minnesota | Registered: Feb 2010
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
I had been stuck for a year and a half in treatment.
After 3 weeks of this drug, my immune cell counts have come up to normal for first time in two years.
I herxed HARD on this for three weeks. Seemed to come out of it for a few days, and am herxing again. Also, make sure you check you liver counts frequently, it can cause severe (as in lethal) liver problems. It can also cause heart problems, so if you have heart or liver issues, I persoanlly would avoid this drug.
But, as long as my liver enzymes stay OK, I will keep at it, since it seems to be helping me.
It can cause some insomnia, so I take it in the morning.
I haven;t gotten the bad headaches from it...yet. I know that it is not uncommon to take this drug and do ok with it for three months, and then suddenly begin to have problems with it.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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nefferdun
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Member # 20157
posted
I used it for two months with tremendous improvment. I also got headaches from it which is why I quit. I believe my lyme was gotten under control from Ketek and then bartonella emerged as the primary problem. As Bart causes headache, it may have been what was causing the headaches instead of Ketek but when I quit it, they went away for a while - came on again later.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
herxs for me are crushing fatique, a increase in neck pain (my worst symptom, lyme is isn my cervical spinal joints) return in frequency of some symptoms which had gotten better (hearing issues and muscle twitching). Also, sometimes I get slight fevers (99.5) for a few hours in the afternoon. This is unusual for me, becasue my body temp tend to be lowwer (97.7).
But, then after three weeks, this settled down. I think I am headed towords another one, but it doesn't seem to be as intense this time.
If insurance doesn't pay, or will only pay for half, go to a Costco if one is nearby. They have the best prices on this drug by far. I paid about 325 for a months supply, which is almost half of what is was going to be at Longs and Rite Aid.
Liver enzymes should be checked at least once a month. Also, know the symptoms of liver poisoning, which are listed on the precription pamphlet.
Oh, and one more thing. Ketek can cause transient blurry vision. So for the first few days, I wouldn't drive anywhere.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
This is my second time with ketek. I don't remember problems (a few years ago)before, but this time the headaches at the beginning (about a month ago) were terrible, and just last night and today it was bad enough (right side only) I skipped my AM Tindmax/Ketek. I also have had the fever, or "feels like fever", occasionally, and since my temp is normally anywhere from 96-97, it has been as high as 98.8, which, since I've had lyme is unusually high for me.
Also today have sore throat on right side only, and very sensitive mouth. I had let my theralac lapse, and was just using drugstore probiotics, so ordered and started theralac today.
In 2008 I was off ABX for 8 months before symptoms forced me back. It was so great to feel like traveling again. We went to Asia, and I was able to do everything. Right now, I don't even feel like driving to the store. My LLMD says we just have to keep hitting it, so as much as I hate Ketek, I am sticking with it. My lyme test was Igenix positive last fall, so that gives me more motivation. I don't want the little monsters to get the upper hand. Actually, he wanted me to do flagyl again, but that was the worst abx ever for me...accomplished a lot though.
Best wishes!
Posts: 287 | From Northern California, USA | Registered: Oct 2000
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