I was started on Levaquin 500 mg 2 1/2 weeks ago, and am feeling awful.
I'm still on bicillin 3x a week; mepron for babs and am now again on levaquin for either lyme or bartenella.
My neuro symptoms, fatigue and mid night insomnia is bad, and I'm certainly not feeling better.
I'm a former patient of Dr. B. who treated bart with Levaquin for three months, even though that blood test was negative. My new LLMD started me on Levaquin again because I started slipping with just bicillin. She doesn't clinically diagnose bart like Dr. B., but said Levaquin works well for both lyme and bart.
Does Levaquin also work for Lyme?
I saw her this week and was hoping she'd say that I'm having a herx.
She said that if my symptoms don't get better in another week or two, she feels the Levaquing may not be working and she is changing the med.
At this point I don't know if it's bart or lyme, as the bart test came back negative. But according to Dr. B. who based his diagnosis clinically, that doesn't mean anything.
What do you say? Can this still be a herx or is the med not working? How long -or is it even possible to herx with Levaquin?
Lymehead
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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I would be curious to hear what others have to say about this, but my LLNP took me off my abx last August that were making me feel wonderful (Bicillin and Tindamax) and put me only on Levaquin, and I immediately started going downhill. One of the reasons she changed me to this was to cover Bart also.
When she made this change, which I was apprehensive about, because I was going from 2 drugs to only one, I asked her if it also covered Bb and the cyst form, and she said "they think so".
Within 2 weeks, I felt as if everything I'd worked for had been negated. I couldn't exercise anymore, my left leg started dragging again, I got fatigued so easily. it was so depressing.
After a month of going downhill, she took me off the Levaquin and put me back on Bicillin, w/Biaxin for possible Bart (I wasn't positive either, but my feet had never stopped killing me, even when I was feeling so good in August).
She didn't put me back on Tindamax, because she said that I was close to the limit for reaching permanent neurotoxicity and they didn't want to risk that.
I improved, but not to the point of feeling as good as I did in August. At the end of December I asked her to put me back on Tindamax. She did, and within a week, I was able to start exercising on almost a daily basis again....amazing!
I asked her to never do that to me again, altough she said that Dr. B used it (Levaquin)successfully. Supposedly, it was used alone, and not in combination with other abx.
Tindamax has helped me so much that I'm convinced that the majority of my sx are due to the cyst form. I'm planning on staying on it as long as possible.
My feet got much better w/Biaxin, which she put me on in October to cover the possible Bartonella, so maybe I did have Bart.
That's my Levaquin story. It might have worked for other people, but I don't ever want to see the drug again. If you haven't tried Tindamax, I'd recommend a trial. Both times I was on it, I felt myself improving within only a week or so.
Good Luck.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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Boomerang
Frequent Contributor (1K+ posts)
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She didn't put me back on Tindamax, because she said that I was close to the limit for reaching permanent neurotoxicity and they didn't want to risk that.
How did she determine you were close to neurotoxicity?
Posts: 1366 | From Southeast | Registered: Sep 2005
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Supposedly, permanent neurotoxicity has been reported w/tindamax in patients who've been on it for close to 5-6 months straight, and I was approaching that amount of time.
However, Martin Atkinson Barr, who first proposed Flagyl and Tindamax for Lyme, thought that the reported toxicity might just have been Bartonella symptoms which started becoming more prominent as Bb was killed off.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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Boomerang
Frequent Contributor (1K+ posts)
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Thanks. Hubby has been on flagyl pulses for quite a while now. Hasn't been taking it straight like you have with the Tini. I've read of a lot of good responses to the Tini, and easier on the system.
Gosh, so much to try to keep up with sometimes!
Thanks again for the explanation. Appreciate it.
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I have a real hard time tolerating abx, in terms of esophogeal and gastro problems.
I'm always afraid of trying new abx because of these issues.
I took flagyl for a real short time, but Dr. B. took me off it. I do know it made me very depressed and a crazy herx.
This LLMD mentioned she would want to put me on factive-which I think is in the same family as levaquin, but a much larger pill. (meaning I don't have a clue as to how I will swallow this)
She claims it's very effective for Lyme.
What do you think?
Lymehead
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by Talktel: Hi all,
I was started on Levaquin 500 mg 2 1/2 weeks ago, and am feeling awful.
Lymehead
I think you need to give it more time lots more.
-------------------- 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.
My personal opinion is that you might be feeling the inital symptoms of a reaction to levaquin. I suggest you rule out first that possibility. Two and a half weeks of 500 mg daily is not too much unless you have taken levaquin in the past.
If you are experiencing the first symptoms of an adverse reaction, any single more pill you take from now on might be a giant leap towards permanent damage, that is extremely frequent among long term users of levaquin. A typical reaction to levaquin lasts between one and 7 years of very disabling symptoms. A good deal of symptoms resemble very much to lyme, so you will never be able to tell which is the real cause of a given symptom, and you will blame BB and will take more treatments, and might start a spiralling down with no way out.
Factive is equally toxic and the injuries that it potentially causes are also irreversible in many cases, as it is stated now on the package inserts of the antibiotics of this class.
There is a lot of information about this out there, and also in the main links of this site.
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