I'm taking Levaquin to fight what my LLMD believes is Bart, but what I believe is Brucella.
I know, I advocate against fluoroquinolones usually, but my heart is inflamed and this is life or death I believe.
I'm two and a half weeks in, and still just getting sicker, as usual. How long does it usually take to know if Levaquin is going to work?
Thank you all so much, Sam
Posted by Jordana (Member # 45305) on :
Sam for both of those organisms you should have seen a response in 24 hours; if not then three days.
I don't think Levaquin hits any of the rickettsias. In other words if it's RMSF then you need a tetracycline.
ETA: If you really feel Levaquin is doing *nothing* then get off of it. Call the doc as soon as possible, ok?
Posted by SickSam (Member # 45330) on :
It doesn't feel like it's doing anything, but I guess I'm wondering if maybe either of those bugs could cause a long herx. I don't feel like I'm herxing, but maybe I am. A couple of days last week I did feel like maybe I was herxing.
Posted by Jordana (Member # 45305) on :
Or you could just feel so crappy you'd have no idea if anything was working at this point.
It sucks, I'd hate to see you on 30 days of Levaquin for no reason. You can recover from high dose Levaquin. The problem is that it is basically chemotherapy and you're already so sick.
You should be feeling...something, some easing of symptoms in some way. Easier breathing, less pain, more dependable heartbeat...something.
Posted by SickSam (Member # 45330) on :
Yeah that's pretty much it. So crappy that I don't know if anything is working.
I'm definitely sicker than I was when I started though, but I was getting sicker daily even before I started taking it, so it's hard to tell if I'm herxing or not.
I did read an old thread where one person said they herxed for 6 weeks on Levaquin, but I haven't heard anyone else say that, so figured I'd ask what people's experiences have been.
Posted by SickSam (Member # 45330) on :
I did take doxy with rifampin and Cefzil and had minimal improvement after a month. Not much, but noticeable.
Posted by Jordana (Member # 45305) on :
It might be the RMSF is the culprit right now.
With Levaquin it's also really hard to know whether it's a herx or just a toxic reaction. That stuff can mess you up; it happened to me.
Posted by SickSam (Member # 45330) on :
I don't know. I think RMSF and Brucella both would've responded better to doxy and rifampin the two months I was on those. It's so hard to know what's going on.
Levaquin did mess up my left knee 10 years ago. Still messed up to this day. I know they're bad drugs, but I had to make the tough call to take it after resisting my doctor for a year. We've tried so many other things that didn't work.
I don't know if this means anything, probably not, but I've had prostatitis for 10 years and right now it's burning more than it has in a long time. It burned bad like this on dexamethasone too. So maybe it's herxing, or maybe my immune system is so beat down that the bugs are growing in there like they did when I was on the steroid.
Posted by Jordana (Member # 45305) on :
You know, when the immune system gets dysregulated really weird things can happen, like mast cell disorders and other things just cause unexpected and hard to diagnose inflammation.
Have you tried, like -- any of the histamine blockers, 1, 2, or 3?
Prostatitis is often candida or a fungal infection, which is not going to be helped at all by Levaquin, or dexamethasone. If you've done a lot of abx and you have a low functioning immune system, you could have invasive candida. Have you ever gotten a trial of diflucan?
Posted by TF (Member # 14183) on :
When I was treating lyme and cos, I took Levaquin for 30 days for bart.
I never felt any different the entire time.
Then, I went on to treat babs. I guess the Levaquin worked because after babs treatment I was finished. That was nearly 11 years ago now. Never relapsed.
Posted by bcb1200 (Member # 25745) on :
When I started Levaquin I took it with doxy. I noticed zero difference at all. I felt the same.
I stopped levaquin after 3 weeks because my tendons got a bit tight.
2 days after stopping I had a huge flare / relapse.
Guess it was working!!
Posted by SickSam (Member # 45330) on :
Thanks guys I'm wondering if I'm in that same boat, maybe it's working but I just can't tell yet.
Jordana, yeah I've been on diflucan for a while now. I've tried histamine blockers too, but I probably didn't take them long enough to make a difference. I should probably try again.
Posted by SacredHeart (Member # 44733) on :
For me I could tell the difference. I just went off lev a few weeks ago. The pain was much different. My knees felt like they were going to explode and my tendons in my foot felt like they would pop.
It took several weeks for things to get back to normal.
Posted by SickSam (Member # 45330) on :
Yeah I'm definitely not floxed. I can tell that. I had a little tendon pain when I started Levaquin but it got better with magnesium.
Today makes one month of Levaquin. Nothing improved yet. I'm wondering how long I should stick with this...
My heart needs something to start working to get rid of the inflammation around it. I don't have extra time to waste if this isn't gonna do the trick...
Posted by Judie (Member # 38323) on :
Floxing happens when you stop the med. You're tendons can rupture 6 months or even a year after stopping it.
Floxing is complicated. It's a cascade of problems that happen when you stop the drug though problems can happen while on the drugs too.
Posted by Lymetoo (Member # 743) on :
Sam, I know you are very ill .. but this is one of the most dangerous drugs on the market. I will NEVER take it again.
Posted by SickSam (Member # 45330) on :
Trust me, I know they're super-dangerous. I hate taking them. I have friends whose floxing didn't appear until months after taking a quinolone. I have educated all of my doctors that didn't already know about the dangers of quinolones. Before I knew I had Lyme I was convinced I was floxed. I'm a member of floxie support groups. Turns out I'm not floxed yet though. I cringed when my grandma was given IV Levaquin and prednisone together (I couldn't stop it).
Judie, the goal is to first and foremost knock back the infection that is inflaming my heart. I know Levaquin won't cure it, I know levaquin can cause QT prolongation (so can Bactrim, Diflucan, Zithromax, Flagyl, even Plaquenil), but this infection has gotten so dangerous and I've tried my other oral options.
IV wasn't an option until Levaquin was tried first. So it was either try Levaquin and risk getting floxed or risk dying. I had to risk being floxed. I do monitor my QT interval daily. I have so much medical equipment at home...
I'm deathly ill. I had to do it. After telling my doctor "no" for a year, I had to try it. A devastating drug, I warn my family to not take the quinolones, but I didn't have another choice. After a lot of prayer I started taking it.
So even if it won't cure Bart, I can't let Bart continue to ravish my body (if it even is Bart). At this point, the goal is to save my life. I am bedridden, non-functional. And I know the quinolones have killed people too. I actually posted the fda memo that reported the man dying from Levaquin in the quinolones warning thread several months ago.
Sorry to write so much. I really appreciate you all looking out for me. Very very much. I tell other people the exact same thing about quinolones. Levaquin injured my knee 10 years ago actually. I just didn't have another choice, and my body couldn't afford to wait anymore.
I hate every time I take it, which is why I'm trying to figure out how long I should keep putting this mess in my body before deciding that it didn't work. Posted by dbpei (Member # 33574) on :
So sorry, SickSam. You mentioned that you have had prostatitis for the last 10 years and it had recently worsened since taking the levaquin. (this is another clue that it might be brucellosis)
I think I remember reading in a previous thread how bactrim helped you at one point. Have you ever tried together the trio of doxy, rifampin and bactrim? These are used together for brucellosis and may be as effective, if not more effective, than levaquin.
If you end up stopping the levaquin, I wonder if you could discuss giving this trio a try with your doc.
Posted by SickSam (Member # 45330) on :
I've tried doxy with rifampin, and bactrim with rifampin, but never all three of them together. I did try mino with bactrim and rifampin, but I didn't stick with it near long enough to tell if it would work or not.
Funny thing is I think my prostatitis might be a tiny bit better now for the first time in 10 years. Could just be my imagination, I can't say for sure yet. All my other symptoms are definitely worse.
I've also had bad lumbar spine pain (I've read Brucella likes that area), palpitations, and infrequent mild chest pain for 10 years too (much different from the chest inflammation I have now). And I've also had the mild sore throat when I'm tired for years also, which I've read is Bart??? But Cefzil gave me the biggest herx?
I've kinda concluded that you just have to try treating everything until something works I guess. You never really know what you're killing...
[ 01-19-2016, 02:46 PM: Message edited by: SickSam ]
Posted by Lymetoo (Member # 743) on :
Sam .. keep writing. We care!!
Posted by dbpei (Member # 33574) on :
Yes, Sam. You are so right. That is what we all need to do with this. Please keep us posted.
I am going to ask my doc today to treat me with the big guns for brucellosis and we will see what happens. I hope I will be able to report some good news here in a few weeks. God bless.
![[Smile]](smile.gif)
I'm wondering if I'm in that same boat, maybe it's working but I just can't tell yet.![[Frown]](frown.gif)
I am bedridden, non-functional. And I know the quinolones have killed people too. I actually posted the fda memo that reported the man dying from Levaquin in the quinolones warning thread several months ago.![[group hug]](graemlins/grouphug.gif)