posted
I know there have been a lot of posts with Ketek recently... I need advice as to whether people think it's the Ketek causing the die off of bacteria which is why I have had meningitis twice in 6 weeks and feeling worse than ever in between... or if the Ketek is just not agreeing with my body and I should abandon it as a treatment option.
I was on IV Rocephin for 4 weeks when he added Ketek, 800mg once in the morning. I took it for two days and on the second evening the headache started... chills, shaking, throwing up... terrible head and neck throbbing and pressure... fever etc. My Dr. told me to get off ALL abx and within 2-3 days I was well on my way to better.
I weaned myself back onto my IV rocephin and 400mg a day of Ketek. It took a good week before the head/sinus pressure went away completely. I started feeling symptomatic about three weeks after that happened... and a week later, round two of meningitis. All the same things. As soon as I came off the abx- within three days... I was on my way to better again.
My question- the meningitis... just the tip of the iceburg. Before Dr. J added Ketek to the mix I was doing INCREDIBLY WELL. Running/walking 4 miles a day, coaching softball, playing with the three kids... etc. No limitations, sleeping great etc. Then the Ketek, meningitis.. and back to feeling like I am in day one of Lyme before treatment.
Between bouts of meningitis I seem to have weakness in muscles, shaking, dizziness, twitching, memory problems, word recollection issues etc. DO I ABANDON KETEK? I know you aren't Dr.'s but please advice me as though I were family. I will take it not as medical advice...
posted
you really need a lyme meuro and he is dr k in connecticut.....I believe that you are experiencing a herx but a doctor would have to be the one to tell you...' eric
Posts: 593 | From long island ny | Registered: Apr 2006
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posted
You ask an excellent question. Tell me, when the symptoms go away when you quit taking the meds, are you back to where you feeling when you were running and such??
Secondly, the important thing about treatment is feeling better. If rocephin made you feel better, and that just kept on happening, it may be time to talk with your doctor again. The important thing is that your symptoms dissapear.
Just a thought.......ketek could have irritated Babesia if that's never been treated. Clinda did that to me. I have no idea why it happened either. Maybe it has something to do with partially treating that organism. But for me, I was doing very well on Primaxin, running and such just as you, and when I went on Clinda, I was back at square one. I went off clinda, stuck with the primaxin, and I started to get well again.
Just some thoughts, good luck:)
Posts: 559 | From Cary, NC | Registered: May 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Are they giving anything for the inflamation? You need something to reduce inflamation. Seems like alot to be giving you IV and ketek?
The throwing up could be that ketek is killing some other bacteria in your stomach that you didnt know you had? ie throwing up.
-------------------- 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.
posted
Wow -- interesting post. Sorry to hear you have been feeling so terrible! Meningitis is absolutely awful.
I just started Ketek about 6 weeks ago. I did okay on the 400/day dose, but when I increased it to 800/day, I started herxing terribly, and then *I* got meningitis-- with the chills, shaking, sweating, vomiting, and the most horrible pain ever! (I've had meningitis before-- I also had the word finding problems, general spacy head, etc. after the worst of the meningitis was over. Those lasted several days. (I'm guessing I probably had encephalitis as well, and that took a little longer to go away.)
I, too, thought maybe this was bringing up babs symptoms (as someone mentioned above) -- I tested negative for babs, but that doesn't mean much, really -- symptomatically, it seems likely that I have it.
I'm going to talk to my LLNP about this. I pulsed off the ketek and got better almost immediately. Now, I'm back on it at 400/day -- 4 days on, 3 days off.
I really, really don't want to go through another bout of meningitis -- so I hope I can handle this dose.
In any case, I don't have any answers for you, but did want to tell you that I had a really similar experience.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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