posted
Hi there, I'm new here. I've been struggling with Bartonella/lyme for past 4 years. A few days ago I started Levaquin 1 x 500 mgs per day. On the 3rd day I went for an easy jog (I'm an avid runner -my LLMD said it would be ok but told me not to go crazy and start any marathon training) and 10 minutes into it I had a flare of my achilles tendon and had to stop the run. It totally freaked me out (with much help from the net). As I said I'm an avid 44 year old runner that still envisions some good running days ahead and the thought of losing a tendon is not a pleasant one. The positive of levaquin (I guess) is that it seemed like it gave me an immediate herx as my symptoms really flared (facial numbness, head achy and tingling, anxiety, etc.). Today is 4 days after I took my last 500 mg pill I still feel herxy.
After calling my LLMD he told me to stop the Levaquin and prescribed just Biaxin which has never worked for me. I wanted him to add Rifampin but he was reluctant to do so over the phone so I have to wait a couple weeks until my next appt. I've taken Rifampin before but my previous LLMD prescribed it by itself and I've read that it must be administered within another abx. I was thinking doxy which I've never taken in my 4 plus years on abx believe it or not (been on many many others including a 3 months stint of IV Rocephin). Will adding another drug with the Rifampin make it work for me?
Other questions for the group.
What is my best option as it seems like options are limited for bartonella.
Reduce my dose of levaquin to 250 mgs and give it another shot after taking heavy doses of mag for a couple weeks? I'm totally scared since not being able to be active due to the loss of a tendon would be horrific for me. I am also scared because 3 pills looped me out pretty good and it would be tough getting through what I think are bad herxs.
Try the rifampin/doxy combo.
Other?
Appreciate any insights the group may have.
Chris in PA
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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posted
I had great results from Levaquin, it was my miracle abx.
However, if I had achilles tendon pain, I would have stopped.
I can't help but wonder if it was the running that caused the problem. Did you ever have any of this kind of pain before? Would it have happened if you didn't run while you were on it?
I had some pretty severe knee pain that ended up being a herx and went away after a few days.
Were you taking magnesium when your tendon started hurting?
I would discuss it with your LLMD, but from what I understand, you don't really want to take chances with Levaquin. I never had achilles tendon pain with it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
A friend's daughter has been prescribed a new abx - form of rifampin - called mybutin.
My son took rifampin/doxy and zith then added on weekends.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
sixgoofykids (I love your handle BTW - mine should read threegoofy kids!)
I don't think the tendon pain was solely from the running. I was running super easy and had never experienced that kind of pain ever while running (probably the only running injury I've been able to avoid in my 20 year running career).
I'm not positive that if I took it easy (i.e no exercise) that the pain would not have happened. Thats why I'm considering asking to try again. In Kenneth Singleton's the lyme disease solution, he states that after experiencing tendon pain once to wait a few days and try it again at a lower dose.
My LLMD does want to mess around and is probably as scared as I am at reading the class action suit stuff thats out there surrounding levaquin and tednon issues.
I was taking magnesium but had just started taking it the same day as the levaquin (and yes I was taking them far far apart from each other).
So bummed because perhaps Levaquin was my miracle drug too.
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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posted
I wouldn't run period on levaquin, that is really asking for big time trouble. Light running or heavy running really don't matter. You really have to relax and lay low on levaquin.
Don't expect anything amazing from rifampin. It works pretty good but almost always results in a bartonella relapse. Something you might want to try is Zithromax/Bactrim. I've taken them all and bactrim appears to be just as effective as rifampin against bart. If you decide to go the rifampin route then I'd recommend zithromax, ketex or biaxin combined with it. Doxy combined with rifampin isn't such a great combo IMO.
Posts: 25 | From Ohio | Registered: Jan 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
mrpotto, if you can jog while ill with lyme & company? I would call that a blessing. I'm just looking forward to becoming a walker again.
Walking daily (or 5-6) prior to this illness was how I exercised and contolled stress levels from Corp America. 30 minutes after dinner, quick pace for 2 yrs and I loved how it made me feel.
Slept like a baby. Woke up refreshed and ready to tackle the world again.
Some day I will be there again. I have a word that I've had to learn the meaning of. PATIENCE....
Good luck.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Mrpotto, I guess at this point, you know the risk, you know about the Levaquin issues, Singleton's comment makes sense .... how willing are you to take the risk?
If it were me, it actually would be a risk I would be willing to take. Others would not.
I would not run (maybe elliptical?), take the lower dose, and STOP at the first sign of tendon pain.
I know others would say don't risk it. I guess it's up to you whether it's worth it or not. I would understand your choice either way. It's a hard decision.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I took levaquin at half dose 4 days a week, 3 weeks a month for six months last year.
I did have tendon pain but it was mild. Since I've been off this regimen I have had vast improvement - I think the bartonella's butt got kicked, frankly.
The tendon pain is now gone. I'm wondering if, for the short term, the benefit of low-dose levaquin might be in your best interests so that in the future you can run all you like bartonella free!
Good luck, Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
map1131-I realize there are others way sicker than I and up until this point I have been able to run. Some days its a gut it out effort because I feel so bad but I have always felt compelled to run through anything and this so far has been no different. I'm lucky in the sense that most of my symptoms are from the neck up.
Hang in there and maybe you'll be back at too!
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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posted
Yes it is very hard for me to separate the newly emerging (for me) lyme joint and tendon pain from possible levaquin tendon damage...but when you look at this from the outside (from non-runner's point of view), you can see the need to halt levaquin.
My llmd pa insinuated that tendon pain would die down once I was off the levaquin, and I intend to really dose up on the magnesium malate in hopes that helps...along with my usual icing and ibu, which does help to a degree.
I would really like to see more science on this subject (vs heresay)...the incidence of real tendon damage is Either really low or considerable, depending on who you believe.
Walking sucks...
lm
[ 04. April 2008, 06:42 PM: Message edited by: LocalMan ]
Posts: 212 | From Eastern CA | Registered: Apr 2007
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
mrpotto, I've been extremely ill with Lyme and co's for five years and yes, I did herx pretty hard while doing the half-dose levaquin regimen.
Not enough to stop, though!
I went from terrible body spasms almost every day to NO body spasms after the six months was over.
The relief has been wonderful.
I still have weak legs from Lyme itself, but I'm not wheelchair-bound like I was before I defeated bartonella and babesia.
Levaquin does affect different people differently. But this is what worked for me after a failed attempt to do levaquin at full dose every day 3 years ago. The tendon pain and herxing was too much at the regular level.
I feel like I wasted 30 months of precious time not doing the levaquin slowly and lowly and getting it out of my system that way.
I was never going to get better without it. Thanks to my husband who came up with the idea!
Take care - Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
When I was on Cipro, I couldn't even put the slightest weight on my tendons without pain. Lying in bed on my back with the weight of the covers on my extended feet made my tendons hurt intensely. That's when I finally stopped. After a month or two, the pain was completely gone, but I know some aren't so lucky.
I think you either need to stop running until your tendons are back to baseline or try another antibiotic.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
An update. My doc has agreed to let me try lower dose levaquin with no exercise. I'm scared but need to get through this. I hope I'm making the right decision.
I've spoken to my wife and she is prepared for me to herx. Its been a bit of a struggle on that front because my symptoms are from the neck up, I look perfectly fine. This has led to a modest amount of disbelief when I say I'm not feeling well (my wife thinks its a ploy to get out of helping around the house)We have 3 kids ages 13,11, and 9 and we do need a team effort and I've felt like I've been able to do my share..... This is going to be tough because my wife does not like to see my "lying around".
Chris
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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posted
Good luck with the lower dose. I hope it works well for you. I herxed for six weeks on Levaquin, then steadily improved.
I did have the cognitive issues, and they flared badly, so be ready for that. I was incoherent at some points.
I also had a lot of muscle pain in the beginning.
I also pushed through exercise like you mention, but not cardio, I did not have the stamina for that. I did regularly go to the weight room though. Now I do both cardio and weights.
I think whatever exercise a person is capable of, they should do. We have to push ourselves a little every day, even if it's sitting in a chair and lifting our arms up and down. With working out, we're either gaining ground or losing it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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were you herxs so bad you couldnt drive, work, help with the kids, etc.? I just took 250 mgs about an hour ago and I'm starting already. Scared as you know what.
I just went downstairs and did 4 easy arm curls and my tendon pinged so I'm done with that too. I may see if a slow 10 ten walk will work every other day. Perhaps I can increase my laundry folding for exercise! My wife will love that!
Chris
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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posted
I was in a significant amount of pain when I first started herxing from Levaquin. I spent most of my time in bed or on the couch. Epsom salt baths helped a bit with the pain.
I couldn't help with the kids .... in fact, the kids helped with me (I'm the mom, dad can't handle it all). Your kids are old enough to fold the laundry and let Dad rest. My kids have been doing all their own laundry since I've been sick. They also each have a room of the house that the are in charge of in addition to their rooms.
One night, my 11 year old and 9 year old were cooking dinner!!!! They made brats and steamed carrots! Don't underestimate what your kids can do.
But this was the drug that made me feel well. Not a little better, but WELL. Hang in there!
If you lift weights, you might want to do lower than normal weight .... I still lifted once the initial herx let up a bit.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
My primary bart symptoms were cognitive and GI. I had a lot of muscle aches also, that apparently were bart related, or at least were part of the bart herxes.
I could not have worked before I started Levaquin, and I got worse from there. If you're working now, we started from a very different place so perhaps it won't affect you so badly.
We also changed around a lot of my protocol at the same time .... I was taking levaquin, minocycline, tindamax, malarone, lariam, and plaquenil all together. So, part of the herxing could have been due to any of those drugs as well, though I've always credited the Levaquin for clearing the GI and cognitive symptoms.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
ok fair enough sixgoofy, maybe I'll be able to bluff my way through this (I play a lot of poker too!)
What magnesium products are recommended while on levaquin? I'm taking something called Tri-mag and some other tendon supplement my doc gave me that has some magnesium in it.
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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posted
Day 3 of the reduced dose levaquin and I hope to god that I'm herxing. I'm here at work feeling absolutely like poop. Brain foggy, weepy (just got off the phone with my wife). So far no tendon pain so my fingers are crossed.
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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posted
When a man is weepy, either his dog just died or he's herxing.
I hope the herx lets up soon.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I wouldnt do anything related to stressful on levaquin. I tore 2 tendons 3.5 months in on levaquin. Any deep soreness take it very easy I also heard magnesium helps b12 injections wouldnt hurt either.
-------------------- 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.
posted
Yea, I'm not normally a weepy dude. Yesterday my 11 year son got a big triple late in his baseball game to knock in a couple runs and break the game open and I felt it coming on. Also I was bit weepy at my 13 year old daughters strings concert in the afternoon while watching her play violin.
What detox methods should I be using now to clear some of this? I think the running I used to do would at least sweat some of the bad stuff out. Now that I'm off exercise what are my options? I'm drinking more water than I ever have.
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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posted
Saunas are good for sweating it out .... I have a far-infrared one at home .... most gyms have conventional ones.
Also, you might add some lemon to your water.
Don't be adding more toxins by eating bad foods!
I've found coffee enemas to be very helpful .... before you knock it, Google it and see what you find .... they're helpful for glutathione production.
I also drink undenatured whey protein every day to be sure my body has the raw materials to make glutathione.
You could always do other exercise that does not involve running .... I used the elliptical when I was on Levaquin.
It's looking like I might have to go back on it myself ... guess that means no racquetball .... darn, I was planning on playing lots when my daughter gets back from college .... she can't beat me, LOL.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thanks six goofy. I have to admit I don't have the greatest diet but I'm trying. I took a 15 snail like crawl in my socks on my dining room's padded carpet this morning and things held up ok. Not one drop of sweat unfortunately. Maybe the eliptical (easy on tendons)? I'm super paranoid now about having to stop the meds that I'm taking it super slow.
It's supposed to be hotter here (Philly suburbs) this week so maybe some sun will help me out.
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
sorry to hear about your dilemma but i have to admit, if youre still running with all this, i would count that as a blessing.
there are many of us that can barely walk or walk at all, but i do understand your frustration.
levaquin is effective and powerful but you and your dr need to evaluate if its worth the risk.
good luck, best of health.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Chris, you might talk to your doctor about the elliptical. I use it because it's no impact and I've had leg troubles for years -- shin splints and sore knees (now I know why -- Lyme and bart).
I feel like it's okay for me because it's a controlled movement so I'm not so prone to injury, whereas if I play racquetball, I'm more likely to twist something the wrong way.
It's probably a great idea to be taking it slow with your previous problem on Levaquin. I couldn't do cardio today (I skip it when I feel fatigued), but I managed to break out in a sweat with weights. Next, I'll go sweat in the sauna!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
As posted earlier I just dropped levaquin last week in hopes (patellar and achilles) tendon pain drops off. I don't know how to describe fear that I may have real damage...intense.
I already had a torn rotator cuff, at least it already hurt a lot prior to levaquin, MRI confirmed. What's new in last week is pain in other shoulder, as if it's going now too.
I normally (used to) do pretty intense training both running and lifting, but have gone really easy last several months...having a hard time believing skiing and shovelling were enough to do this to me.
Ugh.
Oh yeah, my original question...do many of you have shoulder pain with the levaquin? lm
Posts: 212 | From Eastern CA | Registered: Apr 2007
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Chris, I'm glad my husband doesn't mind me lying around and has seen me at it for five years now!
The only ones who care that I have to lie around so much are me and my mother-in-law! She thinks I'm a "bum".
I'm hoping to start a walking program soon. I'm very excited about it. When I was younger I lived and worked on a farm and I was in very good shape. I played a lot of tennis, too.
I really miss being strong and healthy. My goal is to return to some semblance of looking and feeling good within the next two years.
I've already started with a 20 lb. weight loss from diet alone. Now I want to try for 20 more with the walking.
Whoohoo! Pumped up!!
Take care - Lymelady (Julie)
PS - Localman, I didn't have shoulder pain with levaquin. The pain was centered in my shins, ankles, and achilles.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Being on Levaquin myself, this topic has been of great interest to me. I've been having all sorts of strange leg pains since being on it.
My LLMD has had me stopping and starting the med, but I think it's really hard for them to tell the difference between a herx or if it's damage due to Levaquin.
Is there any sure signs any that have actually had a tendon rupture, that in hindsight, you can look back on now and say, you should have seen the signs?
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
Local man. I had a weird shoulder pain sensation last night while in bed rolling over. It was brief and painless but felt like my shoulder rolled around in it's socket for a brief moment.
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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posted
Yeah my other shoulder (the non-torn one , I think) just started doing that last week. I can make it pop around pretty easy, started very suddenly...the pain is inconsistent...but it really sucks. I can only sleep on my back...no wait, I can't do that either now, due to neck and mid-back firing up again...sigh.
Again: herx, levaquin, both?
I hope to bombard that question with magnesium malate. Going to put off doing another shoulder/neck/back MRI, at least for now.
lm PS > will send a pm when I can compose...I think you'll find a lot of my story scattered here.
Posts: 212 | From Eastern CA | Registered: Apr 2007
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I respect your desire to stay aerobically fit. I, like some others here am an active athlete and one of my primary concerns when I got Lyme was the worry that I'd not be able to train (I ride mostly) and race. I have been able to. I would take the suggestion that perhaps you utilize other forms of aerobic exercise whilst you're healing. Blowing out an achilles would be brutal.
You'll be back to where you want to be, just don't hurt yourself in the meantime. And, by all means, try to stick with the aerobic stuff if you can. In my personal experience, the mental release alone was worth the effort during my acute phase.
bt
Posts: 299 | From New Hampshire | Registered: Jul 2007
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posted
Yea eyebob, its been tough the last couple weeks and I've been literally walking on egg shells. I have been taking 15 minute walks but don't want to push it. I feel pretty good today so may shoot for 20!
Definitely taking it way easy as agreed that blowing an achilles would be difficult.
Chris
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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