I started a low dose of levaquin (250 mg day) 2/17 and had what my Dr thought was a herx about a week after. Now my shoulder is sore and a somewhat slipping feeling. I had a chronic dislocating other shoulder so I am very wary of that "slipping" feeling.
I am wondering if this could be the start of the tendon problems or am I just being paronoid?
I decided not to take the med today and see if any difference. I am actually glad I herxed because I was suspcious of bart but my Dr didn't think so. I don't want to give up something that was working.
Does this sound like the tendon side effect?
Posts: 262 | From nj | Registered: Dec 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I would bet it's a herx, but it's good to check with your LLMD.
My knee started hurting really bad and differently than normal a few days into the Levaquin. I called my LLMD and he said tendon problems from it generally start in the heel, he's never seen them start in the knee, but to watch it for a few days and talk to him the next week.
Ended up he was right, it was a herx.
If it's a herx, stopping the meds will still cause the pain to stop, so it won't tell you anything.
The pain might be a good sign that the medicine is working.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Maybe I should take the med then?? I had heard heel too but can shoulder be effected? Is it just tendons (not ligaments) that are affected?
In 2 1/2 years I have never been as sure about a herx as I was this time so maybe this ache is part of it. This has been intense and I guess that answers any question of whether I have bart or not.
Posts: 262 | From nj | Registered: Dec 2007
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posted
It could be a herx, but the safe choice is to consider it a toxicity of levaquin. Fortunately for you the dose you were taking is low.
Levaquin damage is widespread. Now that you have taken levaquin, if a biopsy of any tendon of your body would be analyzed, it would show degeneration processes going on. For bigger doses, even an ultrasound would show the micro and generalized injuries. Some medical papers describing this fact have been reproduced here by other fellow lyme sufferers.
My knee started hurting really bad and differently than normal a few days into the Levaquin. I called my LLMD and he said tendon problems from it generally start in the heel, he's never seen them start in the knee, but to watch it for a few days and talk to him the next week.
Most levaquin injuries on tendons become evident on other tendons different to the achilles tendon (back of the heel tendon), specially shoulders, wrists, knees, fingers, toes, back, neck, elbows. The problem is that out of ignorance most doctors believe that the achilles tendon is the most or only tendon affected. There is no wonder because clinical pharmacology is only taught for some weeks on most curricula of medical universities. Therefore doctors only know what they learn from the information provided to them by the lab-representatives.
Do not forget either that the tendon issues are the least severe of the damages caused by levaquin. Levaquin above all causes all sorts of neuropathies (brain damage, small nerves, heart nerves, autonomous (urinating,...)) an vision injuries that many times (specially after long doses) become permanent, that is to say "irreversible", as the package insert states clearly.
If one word is synonimous of levaquin is pain, long lasting pain after taking long treatments.
I also suggest you to check out the site recommended by adamm:
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Lymeflox, my LLMD was speaking from his EXPERIENCE, not what some drug rep told him. He made this very clear when we were talking.
There is a danger to EVERY drug we go on. I know for some people Levaquin has produced undesirable side effects, that can be said for any drug. But for others, it has produced miraculous cures.
The thing is to weigh the cost vs. the benefit. For me it was the last try before IV. I had severe cognitive issues. I had severe GI issues. That all cleared up on the Levaquin.
I'm not saying it's good for everyone .... but it's not BAD for everyone either.
You can scare yourself out of taking just about every drug used to treat Lyme.
BTW, what is your source that most tendon injuries are not the achilles tendon?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
lymeflox and adamm has this happened to either of you from Levaquin use? I have heard some of these things before and have avoided Levaquin for a year because of it. The reason for the low dose is because of my hesitation.
Since I herxed (more than shoulder pain) I think that is an indicator of Bart and possibly why I have not gotten well and have mobility issues. How else can Bart be treated? Is Rifpham (sp?) as effective?
vjb has the pain subsided?
Does anyone know if you were floxed would the pain go away or be continuous?
Posts: 262 | From nj | Registered: Dec 2007
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adamm
Unregistered
posted
Hasn't happened to me, has happened to Lymeflox and, I'm pretty
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I was on Cipro Last week for a urinary tract infection(same class as Leva) took one 500mg extended release dose. Woke up the next morning with both calves very tight.
Could hardly stand, and then my wrists both felt like i was spider man(felt like someone was pulling at them) odd sensation and palms hurt.
I thought it might have been because I walked more the day before.
I continued on it, and the pain went away some, but I just dunno. Today i went to do a minor quad stretch(the one where you pull your one leg back behind you) and it felt like I tore my hamstring.
Really hurt!! I talked to my LLMD and they said that often those low in magnesium have the most troubles, but they did have a patient that still cant walk after a year of going on Leva :-(
Ive been on these before and this was the first I had of this. Its frustrating because it really helped my bladder. My main symptom.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Be very careful. No-one can know for sure whether its herx or not. That includes every LLMD and MD on this planet - no matter how experienced s/he might be.
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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posted
My shoulder continues to hurt (in the joint) so I decided to stop the Levaquin on Thurs and wait until I see my Dr on Mon. She is not there from Thurs afternoon until Mon anyway so can't call.
I am going to ask to try Rifampin instead and see if it is effective.
Posts: 262 | From nj | Registered: Dec 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
NJgirl, are you supplementing magnesium? I was the whole time I was on Levaquin (actually before and after as well).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I take so many suplements but not magnesium alone. I bet some have mag in them though like calcium and some others. I am going to check.
How much magnesium are you taking with Levaquin?
Posts: 262 | From nj | Registered: Dec 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I am not taking Levaquin any longer .... I took it for 12 weeks, my symptoms resolved and I still remain symptom-free as far as BLO's (I only have a couple babs symptoms, no Lyme or Bart symptoms). But I do take Magnesium .... 600 mg.
posted
The side effect I experienced with levaquin was increased nerve pain.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
O.K. guys. Fluroquinoline floxing (if I spelled that correctly) is very real, and it happens all the time.
When I first was diagnosed with lyme, I was sure that I would be cured. I was sure that no one in this world was going to be as determined as I was to beat it.
Then, when my llmd put me on cipro, and then levaquin, my world was shattered. Let me tell you, it took over two years and one knee surgery to recover from the floxing.
I didn't know what a flox was at that time, and neither did my very, very respected lyme literate medical doctor.
But when I said....hey, this is not a herx. This did not crescendo and then abate..., the doc didn't know what to think.
And it didn't begin with the achilles tendon, it was every single tendon in my body, a torn minicus disk, and severe nerve damage. It put me in the emergency room three times.
I went through a period of dark depression because I couldn't believe that God would play this "joke" on me. How could I put all my faith in God, and have this happen!
And the nerve damage manifested in horrible sleep disorder, terrible anxiety that caused me to cry and hyperventilate....it was the worst nightmare.
No, my doctor did not supplement magnesium while he put me on cipro. And after the floxing, I did the research to find the mechanism of action for the damage. I brought it to the doctor's office and flopped it down on his desk. He was in shock. His drug rep had never told him about all of this.
The next time the drug rep came in the office, he told me, he dropped all my research down in front of her face and asked her to explain.
He said she went running out of the office and you could hear her heals clicking rapidly all the way down the hall. He chuckled thinking about what her face looked like.
He gave me a formal complaint form to fill out and mail into the drug company. And he started me with glutathion infusions (spelling), magnesium injections, and B-12 injections.
AFter two years, I can say I recovered that part of my damage, except for the one knee that has never been the same since the miniscus disk tear.
It does happen. How can you tell if it is a herx or not? That is tough, isn't it.
If it is a herx, it will resolve when you quit taking the medication.
If not, two weeks after the meds stop and it is still screaming in pain, I would suspect damage.
I wish the world were black and white. I know that taking cipro and levaquin kicked my husband's lyme/bart in the butt big time.
But, I was not able to do it.
I have not let any doctor give that stuff to my lyme children, since they share my DNA.
Just be careful, and listen to your body. You probably know what a herx feels like. If it feels different, then be careful.
mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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I will ask my Dr which med she recommends now. My shoulder is barely sore now. That might mean it was part of the herx?
I do think I have bart and it is probably the reason I have not gotten better. I have not been treated for it in the 3 yrs because I don't have the "classic" symptoms and did test neg.
I also believe I have had lyme/bart? for decades. If that is true I guess bone pain makes sense as it is pretty dug in. BTW I need a knee replacement (I'm young for this) and my spine is affected also (from bart?) For that reason I want to do what will work best but I can hardly walk now and don't want to make things worse.
Hard to know the right thing to do and the Drs don't know difinitely either.
vjb you took Rifampin and Levaquin? Did you make any progress on Rifampin?
Posts: 262 | From nj | Registered: Dec 2007
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-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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