I have been taking 500mg of Tavanic (Levafloxacin) for 3 days now with a proton pump inhibitor and also 300mg of Rifampicin daily.
I handle the Rifampicin very well and it helped very much with Bart initially but the 300mg daily didn't eradicate the bart symptoms entirely. Hence why my llmd decided to introduce Levofloxacin.
Since taking Levafloxacin i have become quite sore in my joints and tendons and just generally feeling of pain. It also feels like my bart symptoms are disappearing i.e crawling and stinging sensations on skin in particular. I have no doubts it is killing the bart so my dilemma is what do i do?
My shoulders are sore and particularly causes problems sleeping as it is uncomfortable, I am not sure what to do i don't want to stop taking it as it is working but the associated pain that comes with it is also difficult.
Would appreciated all your views on this.
Thanks Jason
Posted by sixgoofykids (Member # 11141) on :
Jason, the Levaquin caused me a lot of pain when I started taking it. I called my LLMD and told him I was particularly concerned with the pain in my knee.
I also had significant upper back/shoulder pain and muscle aches all over.
My LLMD said he thought it was a herx rather than drug induced tendonitis as the tendon problems he has seen in his experience have started in the achilles.
My knee pain lifted in a couple days. The muscle aches continued. After six weeks, I started feeling better and made quick progress. By 12 weeks I felt 95% of normal compared to the 70% I felt prior to the Levaquin.
Be sure you're supplementing magnesium. Epsom salt baths help a lot, too.
Posted by Gabrielle (Member # 5329) on :
Jason,
my pains (mainly in all parts of my legs) started 2 hours after I took the first pill of Levaquin three weeks ago. I hope it is a herx.
I had two days last weekend where the pains were gone although (or because?)I had been planting and seeding vegetables in the garden for some hours I would have expected the opposite.
Now the pain is back. I also read that tendon damage mainly occurs in the achilles tendons. This part is also hurting sometimes, but sometimes it's the ankles, the knees, the shins, the heels - pretty much all the legs.
I'm also scared. Sorry that I cannot help.
Take care,
Gabrielle
Posted by JasonK (Member # 14071) on :
Mine sounds almost identical, pain is in the shoulders mostly and also my back and side of ribs. Some tenderness behind knees when walking up stairs, and tiny bit of tenderness in achilles but not enough to worry about. Maybe its me herxing i know my body at the moment is always twitching like its knocking it over. I so hope it kills it all.
Maybe i should halve my dose and work up to 500mg a day. Thanks for your input sixgoofy.
Anyone else having similar experiences?
p.s sixgoofy did your pain in your shoulders subside its driving me crazy?
Posted by sixgoofykids (Member # 11141) on :
Yes, Jason, I'm no longer in pain at all from Lyme. Once in a while I feel my knee, but it's not really pain, just an awareness.
The reason I'm back on it is GI issues and fatigue. I had some cognitive issues creeping back in as well. I haven't even been on it a week this time around and am seeing improvement already.
Epsom salt baths got me through the first time on it! I also had to take Vicodin. You know that when you take Vicodin and have more energy rather than less, the pain is significant. (My LLMD did not give me the Vicodin .... I had it leftover from something else).
Posted by JasonK (Member # 14071) on :
Hi Gabrielle,
I am getting pain in my legs but not too bad, my main concern is my shoulders. If i didn't think it was working i would stop but it definitely feels like it is. I hope your pain subsides as well. Good luck
Jason
Posted by mrpotto (Member # 15123) on :
Jason, I'm also on my 3rd week of levaquin. I started out on 500 mgs for 3 days and then on the 3rd day while jogging had a shooting achilles tendon pain to the point where I had to stop running and limped back home.
My doc had me stop for 5 days and restart at only 250 mgs (half dose) plus no running.
I'm still herxing pretty good so I'm hoping it's enough. My legs have felt gritty at times (back of the knee, shin and some tinges in the heel and achilles especially at night when I'm in bed).
I see my doc today and will ask him if he wants me to work back up to the 500 mgs. Quite frankly I'm scared of that because of the powerful reactions I'm having at 250 mgs. I also don't want to be on this drug any longer than I humanly have to so hence my dilemma.
Good luck to everyone.
Chris
Posted by Monica922 (Member # 13496) on :
I hav eonly taken one dose so far so you can imagine I am also scared. So far I had kind of a floaty feeling and some weird muscle spasms last night. Is the Levaquin treating bartonella only? or does it hit the Lyme too? Thanks, Monica
Posted by TerryK (Member # 8552) on :
I had significant pain initially with the levaquin. I'm 6 weeks in and I still have pain but nothing like the first month. I've also had increased muscle burning, cramping and acidic secretions. Levaquin causes itching in me. Oddly enough it occurs about 17 hours after taking my dose and only lasts for a short time.
The severe muscle pain started in my hips, legs and feet. I had a very hard time getting around for about a week and overnight it was like all the pain went from my legs into my lower back. That lasted about a week and then it was pretty much gone and my colon has felt inflamed and sore off and on for several weeks.
My neck and shoulders and knees have also been sorer, especially my neck. I had difficulty sleeping for a few nights due to the neck and shoulder pain but a good rub from my husband helped a lot.
I also got some knots along the outer edge of my left arm. One very hard knot that has gone down a lot after a few days and then some softer knots that are still there after a week.
I finally got a little hand held massager called a Hitachi Magic Wand that I ordered at drugstore.com yesterday and I used it on my neck. Didn't use it for very long but it gave me quite a bit of relief. My neck is stiff again this morning but at least I had a little relief. I'm going to try it for a short time on my calves today and again on my neck.
I'm not sure how long I've had bart but I'd guess I got it at the same time that I got lyme which is coming up on 50 years. I think the bart has been prominent for a number of years and is likely responsible for a lot of my fibro/muscle pain.
I also think that bart has caused my mothers atypical sarcoidosis. It's hard to sort out which infection is causing which symptom but much of the crawling sensations and neuropathy/skin burning went away with doxy. Doxy also brought out the long red/purple marks that let us know that I have bartonella.
If I have any indication of a tendon issue then of course I'll stop the levaquin but otherwise I'm sticking with it in the hopes of getting rid of this nasty infection.
I started to ramp up magnesium about a month before I started levaquin.
Terry
Posted by sixgoofykids (Member # 11141) on :
No, Monica, it does not treat the Lyme.
Posted by JasonK (Member # 14071) on :
Thanks Terry for your input.
I too have the bartonella rash, long stretch mark like red/purple lines. These showed shortly after i was bitten. And have never gone away just faded but still visible.
My main symptoms are twitching and crawling/stinging on skin, had many other debilitating symptoms which all have disappeared after 8 months of antibiotics.
My blood work showed signs of lyme,bartonella and ehrlicia. But my llmd seems intent on killing bartonella as my symptoms currently indicate that bart is my problem.
I just hope this is my last stretch and then maybe i can maintain with herbs down the track.
If anyone else has info on their experiences with bart and levafloxacin please tell. Its encouraging hearing peoples progress.
Posted by tdtid (Member # 10276) on :
I too am on Levaquin (about 7 weeks now) and I had a lot of the pain you are discussing. At this point, it seems to come and go, so it isn't the constant pain of the beginning, which I find very positive.
Right now, I'm in the tremble mode, but even that is settling down since it was a jerking or spastic walking type thing.
I think we go through a lot of crazy phases in the Levaquin, but I understand that if we can tolerate it, it's suppose to be a wonderful med for bart and BLO.
Good luck and try to hang in there. Lots of us in this same boat.
Cathy
Posted by JasonK (Member # 14071) on :
Thanks Cathy,
Its nice to not feel alone on this one - Just got to tough it out i guess!
Posted by CD57 (Member # 11749) on :
I'm 4 days into Levaquin and have increased muscle pain as you are all describing. I've been getting some relief from Tiger Balm rubbed in topically, and then going to sit in the sauna. This is no fun, but I'm encouraged because this means it's working!
Posted by stormton (Member # 14412) on :
Yes, posts like this are good. I lasted three days on generic levofloxacin. I have taken pretty much all of the other antibiotics and this was a first from the quinolone family. OUCH!!!! I didn't know what a herx was until i met levaquin. At the time I became worried and decided to stop because I am treating myself. But those 3 days were utter hell. I had the worst pains I have ever had in my hips. My right shoulder felt like it had been dislocated again like when I was younger. My hands burned. I had random pains that would switch every 10 minutes from my eyes, to my hip, to my hands, to my lower back. Then on the 3rd day, I started getting pains in my shins which I thought was the achilles tendon. I was too worried to continue treatment so I thought i'd save levaquin as a last resort. I've done many other bart meds such as rifampin, minocycline, bactrim, biaxin, zithromax etc. They all are capable of getting me to the symptom free point but it always results in a relapse after 7 days of quiting the drugs.
At the time I believed it was side effects and didn't want to risk it after reading the horror stories of those that got "floxed". But now I kind of look back on it as a herx from levaquin. I was kind of mis guided because dr B said there isn't really a herxheimer reaction with bartonella. But that was one hell of a herx I experienced if that was indeed a bonified herx.
I've had all the tell-tale bart symptoms. Lymph nodes, depression, anger, stretch mark rashes, painful feet in AM, burning or dry eyes, too much or too little saliva, burning tongue, skin papules on back and neck etc etc.
I may try levaquin again. Maybe i'll do 250mg this time. I also ramped up on magnesium before that last battle with levaquin. I really can't see how my achilles tendons would hurt after only 3 days. maybe it really was a bart herx and not levaquin side effects.
Does anyone know how you can get email notifications to a post? I never know when someone replies to a thread post.
Posted by Gabrielle (Member # 5329) on :
I'm not sure if these pains are a herx. Yesterday, I wanted to take something down from a high shelves and had to get on my tiptoes.
Suddenly, I got such a bad burning, cutting pain in my left Achilles that I thought: "Okay, that was it - it's torn." But then the pain subsided again
I don't know if a herx is doing that. I recommend everybody to be very careful and not to put stress on your tendons.
![[confused]](graemlins/confused.gif)
I would have expected the opposite.![[Smile]](smile.gif)
Once in a while I feel my knee, but it's not really pain, just an awareness.![[bow]](graemlins/bow.gif)