So I've read some frightening side effects of the fluoroquinolones while researching them (including ciprofloxacin, levaquin, etc.)
I also have read posts by a number of people on here who say levaquin has seriously helped them (sixgoofy). I'm on lyme treatment, but I think it's bartonella that's the worst for me(especially psychologically/coginitively).
I was going to ask my doc next month to put me on levaquin to combat the bartonella, but then I visited a website/forum that was completely against all fluoroquinolones. Some people reported having terrible side effects from levaquin, besides the tendon issues.
Losing a tendon would only make life more unbearable. And some of the people noted bad neuro. symptoms, many of which showed up down the road.
So is it worth taking levaquin? I want to fight the bartonella...I'm miserable, but if there's something better to use, I'd try it.
I know rifampin works for some and not at all for others - I'm willing to try it.
Is there any extremely potent herb that effectively fights bartonella?
I'm on resveratrol (don't know if it's doing anything yet;just started).
So if anyone knows a great herbal/antibiotic bartonella combo, please reply or message me.
I've taken doxy, zith, cefuroxime - they seem to make me herx, but not better. It's only been two and a half months (maybe I just need to wait longer...)
Posted by sixgoofykids (Member # 11141) on :
I see you already know it works great for me!
My LLMD told me to watch for tendon pain when I started it. I also take it easy when I'm on it (I do the elliptical, but don't play racquetball .... first time on it I could do neither of those anyway).
I am back on the Levaquin. The pain the first time around was significant. My LLMD and I talked about it and determined that it was a herx.
The second time around, I'm fatigued starting it (one of my symptoms anyway), but no pain at all this time. So, we beat it down a lot first go round.
The Levaquin significantly helped my cognitive issues and my GI issues, which are my main bart symptoms.
I read the same stuff you did prior to starting it. We all have to make our own informed decisions. I decided the risk was greater to not take it, if that makes sense.
If the Levaquin didn't get rid of the cognitive issues, I would have had to try IV Rocephin next. IMO, the Levaquin was a lesser risk ... besides, since it ended up being bart, I don't think the IV Rocephin would have done the trick.
Posted by tdtid (Member # 10276) on :
Bernie,
I too read all the boards about all the scary things going on with cipro/levaquin. When I was first put on cipro, I had high anxiety and actually took a Xanax before I could swallow the darn pill after all I had read.
At this time, I'm on levaquin since both times I was on cipro, my LLMD stopped me before two months due to various side effects. First time due to "possible" tendon issues. We tried it again, and that's when I was having the black out visions so he took me off it.
But my symptoms still kept pointing to bart after we finished the babs treatment, so he decided to try me on Levaquin. I've been on it about 7 weeks now.
For me.....I've seen amazing results while on it. That's not saying I'm not going through some hefty herxing, even NOW....but I'm definitely seeing a reversal in symptoms that I thought I would be living with for life.
No one here can tell you whether to take a med or not since there are side effects to many, but through all the anxiety and horror stories, for me personally, I'm confident that this was the right path for me to go.
Good luck to you and let us know what you decide. I'm still plugging away on the med, so Sixgoofykids definitely has more experience on this drug than I do. But so far, so good for me.
And I'm a paranoid as they come.
Cathy
Posted by JasonK (Member # 14071) on :
Hi Cathy,
I like your story i am hoping my levaquin experience will follow yours as i am getting to the point where i feel i would have accept certain symptoms that have remained, but even after 3 days i feel it working but not without a lot of pain. Hopefully we can all keep on going with this powerful drug.
Posted by adamm (Member # 11910) on :
I've not taken them, but they sure seem to be.
fqresearch.org
I personally wouldn't use them unless I had exhausted all other
options.
[ 15. April 2008, 01:11 PM: Message edited by: adamm ]
Posted by LocalMan (Member # 11648) on :
I took levaquin for almost 9 weeks, quit 2 weeks ago...I cross-country skied yesterday and feel like I have TWO torn rotator cuffs going now, and my wrist just started, to add to existing knee and achilles.
lm
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by LocalMan: I took levaquin for almost 9 weeks, quit 2 weeks ago...I cross-country skied yesterday and feel like I have TWO torn rotator cuffs going now, and my wrist just started, to add to existing knee and achilles.
lm
So sorry to hear this!! I think the damage can continue for several months, so physical activity should be kept at a minimum in my humble opinion.
Posted by Alv (Member # 15192) on :
I had problems with levaquin .But I started it after the use of 5months of rifampin / herbs and homepathic formula.
I had tendon problems on LEVAQUIN , I was on it for 6 weeks.Had to stop and back to rifampin...Just to keep it down but bart is still there.
i do not want to loose any ground.The neuro problems was definitly bart.So treating bart makes me better .But I am willing to try levaquin again .
As I know that killed some of the nesty bugs and did not suspresed it as Rifampin does .
So basicly I have tried 7 months rifampin and 6 weeks on LEVAQUIN.
Now I am back to RIFAMPIN !
Posted by LocalMan (Member # 11648) on :
The part I'm struggling with most at the moment is that the worst pain and possibly damage is occuring now, over two weeks after stopping levaquin. I had skied and even run and done easy weights during my 9-week course. But now it hits me.
llmd PA implied that I would need to re-start levaquin after tendon pain 'clears up'. From what I feel like now, I don't think I'll be starting it up again. I just pray I can recover this...
Currently cing 5 different sites on my body and bombaring with IBU. Anxiety has become my middle name.
lm
Posted by KauaiGoddess (Member # 11782) on :
Aloha,
I have been on Rifampin for about 5 months now with GRRREEAT improvement! But bart is still there, but MUCH MUCH MUCH better!
I see my LLMD in a few weeks and am considering these guys...
Does Avelox (sp?) cause the same tendon problems as LEvaquin?
Does anyone know what the difference is between the two?
Would you consider rebounding and yoga too much 'exercise' while on them?
Just curious.
Thank you. Love~ Fawne
Posted by CraigC (Member # 13732) on :
Reading this thread makes me disappointed. I'm disappointed because I cannot take Levaquin, due to side effects of the drug when taken for a UTI. I read here, where it's the only thing that actually "kills" the Bartonella. I've got some neuro symptoms that keep lingering, despite being on Biaxin/Doxy combo, and I'm testing for co-infections next month.
If I do have Bartonella, is there any other drug that actually rids the body of the organism? I was thinking of suggesting Rifampin to my new LLMD, but I don't merely want to just "suppress" it.
Posted by CD57 (Member # 11749) on :
Rifampin didn't eradicate bart for me (9.5 months of it), with a combo. But it helped knock it down, significantly!!
And now someone just posted an article that bartonella in Australia easily becomes resistant to the fluoroquinolones (Avelox, Levaquin, etc) so this means it definitely needs to be paired up with another med. IMHO.
Posted by lymewreck36 (Member # 4395) on :
I was floxed. It took two years to recover. THere are a lot of folks like me. It included a lot of neurological stuff, tendon, muscle, the works. It was devastating.
I can happen.
Be careful. mary
Posted by tdtid (Member # 10276) on :
I don't know if this will help any of you that are on Levaquin, but I know that my LLMD suggested VERY strongly that I take a high quality Magnesium product while taking this class of drug.
I can't say the validity of this but I figured it surely can't hurt. I understand it's suppose to help with these tendon issues that can happen when being on this med. Just thought I'd pass that on and GOOD LUCK!
I just crossed my two month point on Levaquin and hoping I can get in atleast another month. One day at a time.
Cathy
Posted by CraigC (Member # 13732) on :
So am I right in assuming that if I can't take the Levaquin, I won't be able to rid myself of Bart [if I have it]? Like I said, I've done Levaquin for a UTI once, and I couldn't handle the side effects.
Posted by Gabrielle (Member # 5329) on :
Craig,
You could try it with Ciprofloxacin. It is said to be less potent against Bartonella but it has less side effects.
I had Cipro already and the only side effect was that it made me tired whereas Levaquin gives me strong tendon pains.
Do a search for CaliforniaLyme's posts. I think she took it for a year and was successful.
Good luck,
Gabriell
Posted by Clarissa (Member # 4715) on :
Craig,
I did 5 mos of Rifampin & Zithro and I have been declared "in remission or post-Bart" by two LLMD's.
I think it's a good combo and I can see significant positive changes in my neuro symptoms.
Don't give up...a higher power is always watching over you so maybe Levaquin wasn't meant to be for you!
Each day/week there will be more and more options. Dr. S (your fave) also recommended high doses of Cumanda from nutramedix.com to kill the Bart. 30 drops 2X daily (30 minutes before eating). That doesn't require an RX so you could get going on that on your own!
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So sorry to hear this!! I think the damage can continue for several months, so physical activity should be kept at a minimum in my humble opinion.