posted
I finally received a three month supply of levaquin for presumptive Bartonella but am now concerned about taking it. I am however because I'm hoping the risk will be worth it.
posted
I made GREAT strides on Levaquin with no problems whatsoever. I felt good and my brain fog lifted for the first time in my treatment. I went from laying around all day to going for long walks and bike rides.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I had the same response as Six. All good. The way I see it as ..You can either take it or you cant. It lifted my chronic fatigue and detached brain on 3 weeks. I have been on it 3 months 500mg. I did Cipro 2 months with same response.
Don't let all those stories put you off totally. Start off slowly and carefully with the support of your LLMD. It may be the drug that makes all the difference.
I know heaps of people who have taken it for a variety of reasons and they never had a negative effect from it.
Thats my opinion and my experince. I would not be without it.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
Looks too risky, no thanks. and i prolly have bart. no way. those videos scared the crap out of me. what makes me wonder is if he is having a two year herx? did he take an infection out of its cage? i think he should test.
-pk
-------------------- Bit in March 2005. Posts: 58 | From Jersey | Registered: May 2008
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posted
I just watched the beginning of the video ..... sounds like Lyme to me. I could have made the first 1 min. segment of that video after taking Doxycycline as that is what stirred up my Lyme enough to make it active.
I'm not saying there aren't risks, I'm just saying that the best place to discuss them is at your LLMD's office rather than the sensationalization of the media/internet.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Angelica
Unregistered
posted
The thought of taking it scares the heck out of me and I have suspected Bartonella.
I also go along with the thought that it can take an infection out of its cage. I may like my eggs poached soft and cage free but not my bartonella.
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i'm sorry to say that since i took the levaquin it has been a downward spiral that i have yet to recover from.
"letting the disease out of the cage" is probably accurate, but i have not been able to get back to where i was before taking it.
i have chronic muscle pains, my shoulder is a wreck (course i already had a previous injury), i have severe liver pain, my sweating has increased 100 percent, and i could go on.
right now, i' say, beware and use extreme caution. i would never take it again, ever.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I took Cipro for 7-8 weeks and I strongly believe it saved my life. Bartonella was causing me severe, excruciating, terrifying, constant cardiac symptoms, and I was completely incapacitated by them.
Cipro pulled me back from the edge, but I did have to stop it due to tendon pain. I was afraid the pain would not reverse, but it did over the course of a few weeks.
For me it was worth it, but I know permanent damage is a possibility and it's a deeply personal choice.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
There are alternative treatments for bartonella, like rifampin and zithromax. If you feel the risks are too high with levaquin or cipro, perhaps you might look into these bart alternative treatments first?
Posts: 2557 | From home | Registered: Aug 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Six,
Were you able to go for walks/bike rides, etc while on it? Or was that more, once you went off it and the smoke cleared?
Just trying to figure out if it was one of those drugs for you that didn't "bog you down" or give major Herxes.
I have taken Cipro, and while I didn't have any horror stories on it, it didn't help a ton either. Definitely was no miracle for me. I do understand that it is not as powerful as Levaquin though.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I am just going into my third month on Levaquin, and I am only feeling better and better. Haven't noticed any side effects from the medicine, either. So it's so far, so good...
Best of luck in your decision.
Posts: 67 | From SF Bay Area | Registered: Jun 2008
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posted
I've been doing IV levaquin for almost three months now and nothing disatrous has happened. It hasn't really helped but I'm using with with mepron for babesia to prevent resistance more than anything. I can say it doesn't seem to cause loose stools like a lot of antibiotics do.
Posts: 499 | From Indiana | Registered: Oct 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i wonder if the people on that "ask a patient" web site, and there were tons of them, pages and pages, of people who reacted very badly to levaquin, had LYME!!!
unfortunately, there were a couple who had severe organ damage and yep, plenty of ruptures...
but i mean if there are millions of cases of undiagnosed lyme, then maybe these people who post about their negative responses have lyme.
could be possible right?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Hoosiers, I felt better while on it. I felt horrible for the first six weeks, then the fog started lifting, the pain started going away, and the energy started returning. I started feeling human again. I felt in the 95% range while still on it.
I switched to Rifampin for 6 weeks, then took a two month abx break (since I felt so GOOD), but took Malarone and Lariam for babs. The babs ended up coming back as those weren't enough. The bart treatment held though.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Levaquin put me on crutches (tendonitis) after 4 days of taking it; I stopped taking it immediately when I noticed the problem. It took about 3 weeks for my issues to resolve, and they haven't ever returned.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Six,
First of all, that is great!
When you said you felt horrible for the first six weeks, what did that entail? Was it just tiredness and irritability (which was me on Cipro), or was it a really defined Herx with all the classic symptoms getting worse? (I ask b/c Cipro never helped me, so that's why I am skeptical about Levaquin)
Sorry I am so inquisitive, it just helps me to know what to look for when starting these meds. I know everyone's experiences are different though.
Thank you!
PS, while I'm here---did you see my thread from midnight last night about Mepron and Rifampin? I thought you were on these together
Posts: 4590 | From Midwest | Registered: Jun 2008
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quote:Originally posted by sixgoofykids: I made GREAT strides on Levaquin with no problems whatsoever. I felt good and my brain fog lifted for the first time in my treatment. I went from laying around all day to going for long walks and bike rides.
I'm finishing off my month of Cipro, has not done anything for me, but am looking forward to see results coming from levaquin.
-------------------- Lingering chronic symptoms: Fatigue, Derealization, Brain fog. Monthly fever with flu-like symptoms that last for weeks. Lyme WB Bands Positive: 31, 41, 58, 66 HHV6, EBV, CMV, & Mycoplasma IGG positive. Chronically Low CD4 count. Posts: 106 | From Texas | Registered: Apr 2008
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