Last year I spent 6 months on Levaquin, which worked great on my Bartonella. During that time I had some tendon pain and one episode of extreme neck/shoulder/arm pain which sent me to the hospital.
I recently began Levaquin again and after 5 days, had another episode of EXTREME neck/shoulder pain. I have now stopped the Levaquin for 4 days, and everyday I get the same pain returning. It is unbelievably bad - Percocet doesn't touch it, and I am terrified it won't go away. It is so intense I want to die.
I think it is from the Levaquin. I have heard of being "floxed" by it. Does anyone know what I can take besides magnesium to get better or point me to some resources for someone like me? I am desperate.
Please help!
Posted by randibear (Member # 11290) on :
i only lasted about 21 days on levaquin and had to quit.....
too strong for me, plus the leg and foot pain was unreal....
Posted by Rianna (Member # 11038) on :
This is not just limited to levaquin, I had exactly the same 3 months in to starting IV Ceftriaxone the 1st time, the shoulder pain got so bad it was unbearable and then the wrist and arm pain was so bad I was in splints.
the pain was so unreal I could not bear it I was using morphine and a tens machine but nothing touched it - it finally went on its own in a few weeks.
I know lots of people talk about being floxed but this is not limited to levaquin - I recovered and it never returned and am back on ceftriaxone again with no problems.
Speak to you LLMD as soon as you can and he will give you the correct advice - It will heal and go away. Whatever you do only listen to your LLMD as its support you need now and not other peoples negative feedback - It will heal but again get all the advice you need from your LLMD asap as we are all individual.
No matter what the body will heal tendon damage in time, if that is what you have
Best Rianna
Rianna
Posted by LymeCFIDSMCS (Member # 13573) on :
You might want to see if you can get magnesium injections or IVs to really boost your levels of it, as oral magnesium doesn't tend to stay in the system. You could also try Kirkman labs magnesium cream.
I had tendon pain for at least a month, maybe longer, after stopping Cipro, but it ultimately went away with no recurrences.
Posted by AndrewInCA (Member # 2010) on :
Thanks for replies so far...
I too had "normal" muscle, joint and tendon pain while on Levaquin. I really don't think this is tendon pain at all, it seems to be nerve pain originating in my neck and radiating in my shoulder.
I have experienced severe pain before and this is unbearable - a 10 on 1 to 10 scale.
Does anyone have experience being severely hurt by a Floroquinolone like this? (floxed?) I seem to maybe recall a doctor who has researched this area? Right now I can barely type or sit up.
Any more info appreciated.
Posted by Angelica (Member # 15601) on :
^^^^^^
Posted by NMN (Member # 11007) on :
Hi Andrew, I am with Rianna on this one. I have been on Levaquin 4 months or so and I also get severe neck and shoulder pain coming and going but I dont attribute this to Levaquin.
Its a lyme thing for me. My herxes are all related to those areas. Levaquin is effective for intracellular lyme too from what I understand.
Levaquins tendonitus usually effects major tendons such as the achilles from what I gather.
Talk to your LLMD. It is just my opinion but I think you should take a lot of things on this board with a pinch of salt. Lots of scare mongering about levaquin.
Posted by Angelica (Member # 15601) on :
You mailbox is full.
Dear Andrew I hope you are feeling better today. I posed this question on another forum and here are two replies.
I was on Cipro long term. Long after I had discontinued it I got extreme unrelenting shoulder pain radiating to the upper left quadrant of my chest.
Finally after weeks of this the doc sent me in for an ultrasound and low and behold I had two partially torn tendons. Anyone who has done research on fluroquinolones knows that they do cause torn tendons.
Not just in a few people either. This person should have his shoulders carefully examined and have an ultrasound.
He may have partial or complete tears of one or more of his group of rotator cuff tendons. There are 4 of them.
*************************
I also had the same problems with Levaquin, was pulled off after 2.5 months.
Side effects from this class of Abx can show up long after we stop taking them. I founs that soaking in the hot tub first thing in the am and then again in the evening helped to relieve the pain and discomfort a bit.
There are also some natural things that can be taken to alleviate joint pain, but you need to check with Dr and ensure they do not interfere with Rx.
Also, as others have said, please insist on having an ultrasound and/or other testing done on your painful areas.
They found a torn tendon in my ankle, and rotator cup problems as well. I am healing now, slow going but getting better. Good luck!
Posted by hopeandhealth (Member # 17605) on :
What does Floxed mean?
Posted by Angelica (Member # 15601) on :
Hope and Health I don't completely understand this myself but maybe this explains it. This class of drugs can cause pain and tendon damage:
Who's Minding the (Drug)store?
The label for Levaquin includes information that is typical for fluoroquinolones: "Convulsions and toxic psychoses have been reported in patients receiving quinolones, including levofloxacin.
Quinolones may also cause ... tremors, restlessness, anxiety, lightheadedness, dizziness, confusion and hallucinations, paranoia, depression, nightmares, insomnia and, rarely, suicidal thoughts or acts. These reactions may occur following the first dose."
In 2004, the FDA issued a new warning on fluoroquinolones, stating that treatment should be stopped if patients felt strange neurological symptoms like "pain, burning, tingling, numbness, and/or weakness ... in order to prevent the development of an irreversible condition."
In 2005-06, the Illinois attorney general and the group Public Citizen petitioned the FDA to add a so-called "black box" warning to packages, this one regarding the danger of tendon rupture, a well-documented effect of the drugs. So far, no action has been taken.
Posted by Angelica (Member # 15601) on :
Andrew here is another suggestion I just received on the other forum from a poster and I hope it helps!
"I also had severe problems related to Levaquin. My ND recommended IV glutathione treatments. I believe this did help. I recovered completely, but it did take quite awhile."
Posted by Angelica (Member # 15601) on :
Clarifying what is going on with Andrew's pain.
"It is not tendon pain I am having. I think the Levaquin can cause severe nerve pain. The pain starts in my neck (spine) and radiates down my shoulder and arm. That is what I am having, and it hasn't gone away after stopping the Levaquin"
Posted by Dahlia (Member # 17066) on :
Andrew, I'm sorry you are in so much pain. Have you called your LLMD about your symptoms?
Since you continue to have the same pain issues with Levaquin, can you try another Bartonella treatment?
Here are some recent Levaquin alternatives for Bartonella recommended by Dr. Burrascano:
Maybe one or a combo of these alternatives will turn out to even better treat your Bartonella with less side effects!
Posted by hiker53 (Member # 6046) on :
Levaquin and its class of drugs can cause tendon problems, but also temporary or permament nerve damage. I don't want to scare you, but I would stop the drug and call the doctor.
Hiker53
Posted by Angelica (Member # 15601) on :
He has stopped taking the Levaquin.
Posted by JillF (Member # 5553) on :
I had such severe pain from Levaquin that I could not do anything that had to do with bending my knees (sitting, laying down, walking, getting up, etc). Eventually it started in my arms too. LLMD told me it was probably due to my weight (lol, no problems ever until days after starting the drug). I can't believe I took his word for it for an extra week
I went off the drug on my own and let the LLMD know. Pain was gone within a week. Never had a problem sense
Clearly, Levaquin isn't good for me
Posted by ladycakes (Member # 12619) on :
What I had on Levaquin was definitely tendon pain, and I was told to stop it immediately.
I haven't really heard anything about nerve pain from it, but I'd check in with the doctor just in case. You'd hate to find out too late that it can cause any kind of permanent damage.
Posted by METALLlC BLUE (Member # 6628) on :
Levaquin can cause severe neurotoxicity as well as debilitating crippling tendon damage.
Posted by Angelica (Member # 15601) on :
Dear Andrew,
I wonder if some activated charcoal would help pull some of the Levaquin residue out of your body. Maybe a pharmacist might be helpful with this.
Posted by Gert (Member # 13584) on :
quote:Originally posted by METALLlC BLUE: Levaquin can cause severe neurotoxicity
This is extremely interesting.....I took Levaquin for a week and enough was enough. I could not even get out of bed and my lower legs and feet were totally numb. I was stomping down as I walked and kept thinking I was going to break a bone. LLMD took me off it immediately and the pain and numbness went away after a few days. Not a drug for me, thats for certain.
Around this time, I also had some tests completed to check biotoxins and the numbers were off the charts. That is very interesting you mentioned that Metallic Blue.
Posted by METALLlC BLUE (Member # 6628) on :
If the medication was discontinued, hopefully recovery will take place rather quickly, but with Levaquin it requires some extra time compared to other medications.
Everyone is obviously affected differently. Levaquin is just a very toxic drug and is high risk. Risk to reward however must be considered before using.
Posted by nyjohn (Member # 15361) on :
levaquin and i did not get along at all!!!
i was given it for 35 days for a non-existent infection about 3 years pre-lyme. it gave me horrible pains all over and made me feel like i was going to lose it at any moment. i stopped after 25 days.
i would be wary of it, just my opinion...talk to your llmd to see if you can switch it up? cefuroxime axetil treated me just fine...actually made some pains go away.