I'm going to start on Levaquin tomorrow (500 mg per day) for Bart. I've read a little about the possible nerve pain/damage issues. Anyone currently taking it, or have experience or advice to share?
Thanks!
Elizabeth
Posted by seibertneurolyme (Member # 6416) on :
The problem you have to watch for is not nerve pain but tendonitis which is different.
Hubby took for 1 month and then LLMD extended to 3 months. Did not have any noticeable effect on G.I. symptoms (bart suspected due to chronic gastritis on 3 different endoscopies within a year or so).
Did get rid of other bad bacteria in G.I. which caused elevated blood ammonia levels (hepatic encephalopathy symptoms -- confusion especially after high protein meals, somnolence, seizure-like episodes).
Testing had identified klebsiella and other ammonia producing bacteria -- overgrowth was result of prior IV Rocephin use.
Ever since med does seem to have weaker ankles and minor sprains which are frequent take forever to heal.
Don't ignore pain from this med as others have had major problems.
Good luck.
Bea Seibert
Posted by Elizabeth in MN (Member # 8466) on :
Thanks Bea! This is very helpful.
Warmly, Elizabeth
Posted by valymemom (Member # 7076) on :
Keep everything Bea has said in mind while on this med.
I was treated with levaquin/ceftin for 10 weeks and did not have any tendon problems. (Very lucky) I started to immediately get my brain back and the shin pain and pinprick rash went away.....actually my knee arthritis was helped, too.
This was the beginning of my treatment. (I did not call an llmd until 6 months after removing the tick from under my arm.)
Now the ketek I am on is stirring up the shin pain again.
Talk your protocols out with board members.....it is such a help!
Posted by hopeful123 (Member # 3244) on :
had to go off of it after a month or so because of pain in the tendons in ankle. several months down the line from then, i am just over this stx which would come back and stay around for a few days a week.
at one point i was so off balanced by the stiffness in the ankle that i turned funny and sprained my ankle.
your doctor should be aware of these side effects and monitor them.
i'm on flagyl which also can cause serious side effects.
good luck with the drug
best, hopeful123
Posted by Aniek (Member # 5374) on :
Elizabeth,
I took Levaquin for a number of months. I did have increased pain in my legs and feet. But during Levaquin was when I made my first real progress.
My LLMD suggested I not push it with exercise that could hurt tendons. So I didn't increase any strengthening exercises I was doing and made sure not to push myself.
The tendon damage is a rare side effect, but it can be severe. It can actually cause tendons to tear easily. I was fine, no damage or tendon problems.
Posted by Kathy D (Member # 7750) on :
I had a good experience with levaquin also. I took it for 6 weeks for bart and it completely cleared my brain after several years of not being able to think clearly. I should add I also was on 400mg IV fo doxy every day. Evidently those 2 drugs together work synergistically and maximize the killing off of bart.
Kathy
Posted by Elizabeth in MN (Member # 8466) on :
I'm so glad many of you have had a good experience. I'll be sure to watch my tendon pain and not to push exercise. And to drink water, etc.
Thanks again, everybody. It really helps to hear your stories.
Warmly, Elizabeth
Posted by Semi-Retired (Member # 7722) on :
I lasted 4 days; the pain becoming more and more extreme in my quads and calves, ankles too. If I remember correctly it started several hours after the first dose.
It took a week for the pain to fully go away along with the painful muscle spasms. If you start to feel pain in your tendons I would cease treatment and call your doctor.
I know a couple people that had the problem and ramped up the dosage and were able to tolerate it. Good luck,
Tim
Posted by Elizabeth in MN (Member # 8466) on :
Thanks, Tim. I will take your advice to heart. My LLMD has told me the same thing -- I'll pay attention to any tendon pain I run into.
a month or so ago I went on Lev. On the 3rd day severve increase in ALL symptoms, not just muscle/tendon. Lasted about 2 weeks then lightened up to a steady (bad) level. I quit for about 3 days and had a slight improvement. Took the last of the pills and had no further increase in syms.
Doc thinks it was probably a herx even though he had never heard of a herx with Lev.
Posted by MKA (Member # 4680) on :
I was on LevaquinIV for 4 months. First it slam-dunked me into menopause. Then it hit the soft-tissues in my body(tendon, ligaments and muscles) like a freight train. I lost the elasticity in all of my soft tissues, to the point where I could hardly move. The pain was excrutiating. I informed the practioner at the clinic where I was being treated what my symptoms were but I was told to continue on the Levaquin. I ended up with tendonitis in both thumbs and had to have surgery on the right thumb. However, it did clear up my brain.
A year later, I am still have pain but nothing like a year ago where every step was excrutiating. I find that Ultram helps with the pain and if the spasms are bad 2.5 mgs of valium. I should have insisted that they take me off of this monster drug because the damage it has done to my body is significant. It is nice to have my brain back....but how long will it last? The chronic body pain is debilitating and has severly limited my physical activity.
Posted by Elizabeth in MN (Member # 8466) on :
Pam: Other people have talked here about herxing on Levaquin, but I haven't heard of one like yours. Interesting. Glad it went away. Today, on top of the fatigue, I seem to have worse cognitive issues... Forgot where I was going on my way to a haircut, for example, and didn't feel like I was safe to be driving. For me, that's pretty bad. Is it a Herx, or just my regular symptoms acting up? Hard to tell.
MKA: I'm so sorry to hear about your bad experience! Although it sounds like your brain is back. I will be sure to insist on stopping the meds if I run into a problem (although I think my Doc said she will have be stop if I have tendon problems). Glad to hear it cleared up your brain. Hope it's permanent, but what a cost to the rest of your body.
Thanks again, everybody. It's really helpful to hear your stories. Elizabeth
Posted by DolphinLady (Member # 6275) on :
In the first week levaquin gave me tons of energy. In the second week this progressed to severe mania. I became hyper active with racing non-stop thoughts and horrible insomnia. Toward the end of the second week I was an emotional mess (more so than usual). I was tired and very wired. In addition, I developed pain in my calves.
I called all this in to the llmd and he had me stop asap.
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