In late 2007 I had a rough experience with levaquin and was most definately floxed (serious CNS issues like insomnia, over the top ear ringing, electrical feelings in my body, weakness - and none of these symptoms had I ever had with Lyme). Over the last 7 months I think I've made it through the worst of it. However, now that I want to go back on abx I'm finding that even the lowest possible doses of abx that I had tolerated in the past, I can no longer tolerate. For example, I recently tried biaxin, which historicaly had never been curative for me but had always supressed my symtoms to a more tolerable level. This time after 2 doses I had severe ear ringing, insomnia and depression for days. Then I tried zithromax at half the pediatric dose (about 100 mgs) and after only one dose I was up all night with insomnia and had severe anxiety. I'm scared to death that this means the levaquin totally fried my cns and I'll never be able to tolerate abx again. What will I do to treat lyme! Plese let me know if anyone has had such an experience or knows someone who did...best..Scottie
Posted by djf2005 (Member # 11449) on :
ur herxing.
u were herxing on the levaquin.
it sounds like bartonella. you stirred it up w levaquin and now drugs like biaxin and zith are much harder to tolerate.
keep at it w low doses, possibly try rifampin
Posted by scottie (Member # 9956) on :
I appreciate that some might think this is a herx and my response to that is to remember back to before you got diagnosed with lyme and how many doctors might have told you that all your symptoms were in your head...but you knew your body and you knew something wasn't right - you knew you were sick. Well, I KNOW this is not a herx. I know my body and how the lyme works in my body (I've had it for 4 years) to know that what I"m experiencing is damage from something else and everything points to levaquin. I'm not suggesting that levaquin is bad. It helps a great many people. Like all drugs there are some people who just can't tolerate them and that is the case with me and levaquin. My question is what do I do now!
Posted by feelfit (Member # 12770) on :
Scottie,
Have you tried the herbal route? Your flox does sound like my herxes.....but you should know your own body.
If you can't tolerate abx...herbs and nutritional support would be my suggestion.
sorry that you are having this difficulty!
Feelfit
Posted by djf2005 (Member # 11449) on :
you may think u know your body but most people dont until they take levaquin my friend. it is more powerful than most abxs.
if you think u were floxed, then ok, youre the boss
floxing does not provide much room for improvement and i personally dont buy it.
i ALSO experienced horrible symptoms on levaquin only to find out months and months later they were a herx...
either way, hope u feel better.
if youre convinced it a floxing, go to floroquinolones.org. theres a few others. all people convinced that a quinolone ruined their lives. IMO, its herxing and they didnt know they have lyme and CO.
good luck.
Posted by nwisser (Member # 15682) on :
Don't forget, there are still herbs to try for Lyme. Some people experience wonderful recoveries with them. (Some don't.)
Posted by scottie (Member # 9956) on :
up
Posted by Hoosiers51 (Member # 15759) on :
When you say, "over the last 7 months I've made it through the worst of it," what does that mean?
Does that mean you were on Levaquin that whole time? And then did you stop Levaquin and start Biaxin or Zithromax? Or were you on the Levaquin WITH Biaxin, etc?
If you were on Levaquin for 7 months, than stopped and took Biaxin and couldn't tolerate it........my guess is you just need to take a few months off all antibiotics if it is that bad.
If the Levaquin didn't help you much anyways, it's not like by taking an antibiotics break you will be "loosing ground."
If you took 7 months off ALL antibiotics though and now can't tolerate the others.....hmmm. That I cannot give too much advice on.
Maybe even in that case your body just needs more time to recover. I would do some liver detoxes or something.....anything you can to try to build your body back up.
If 100 mg of Zithro is causign that much suffering, it is probably a sign now is not the time to be on these drugs.
Maybe you could take dfj's advice and try Rifampin eventually, but I would give yourself more time off.
Good luck.
Posted by Angelica (Member # 15601) on :
Maybe you need to work on detoxing before you can take more antibiotics.
Posted by troutscout (Member # 3121) on :
If you floxed...you floxed.
But you are IDentical to me...when I developed severe MCS...from the massive die-off caused by Levaquin.
Trout Posted by scottie (Member # 9956) on :
hey troutscout...I tried to email you in order to hear more about your experience but your mailbox is full!!
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