nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I was given levaquin for bartonella the beginning of Feb this year and developed tendonitis about a month later. I have had limited use of my arm for three months and could not use it all for one month. Has anyone else experienced this? I am going to see a medial doctor this week. I don't know if I am permanently damaged or if this will resolve itself over time. I do not know if all my tendons are permanently weakened; if this can get better and then flare up again under stress. There is a class action law suit against Johnson and Johnson, the makes of this drug because it causes tendon rupture and tendonitis. Does anyone know anything about that? It makes me think that this damage may be permanent. Just my luck.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I suffered the same thing. I had hideous sciatic pain that wrapped around my leg, all the way to my toes. Of course, no one suspected it was from the Levaquin - they sent me to physical therapy, which only made it worse. Took several months off the levaquin for improvement. It did subside and I don't believe I have permanent damage.
I don't know about the class action suit but am going to look into.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
for some yes, for others no.
If you have tendon pain. STOP!
Also take magnessium.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
Why do you think this is happening? Do you think the antibiotics are reaching & killing the bartonella (and other bugs) embedded in the deeper tissue? That's my guess...
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Where does Bartonella hide? I really don't understand the disease at all. I need to learn more.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
nefferdun,
see what Burrascano says about this. It may help you to recover. Hope so:
Levofloxacin is generally well tolerated, with almost no stomach upset. Very rarely, it can cause confusion- this is temporary (clears in a few days) and may be relieved by lowering the dose. There is, however, one side effect that would require it to be stopped- it may cause a painful tendonitis, usually of the largest tendons. If this happens, then the levofloxacin must be stopped or tendon rupture may occur. It has been suggested that loading the patient with magnesium may prevent this problem, and if the tendons do become affected, parenteral high dose vitamin C (plus parenteral magnesium) may afford rapid relief.
Posts: 9931 | From Maryland | Registered: Dec 2007
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Had to stop Levaquin 3 weeks ago because of pain in my left heel, and now have tendonitis.
Have an appt. with the orthopedist Fri. to get checked out. I have been icing it for 3 weeks and trying to stay off it, but have not seen much improvement.
Since I can't tolerate the stronger nsaids (stomach problems), and we are to stay miles away from steroids, I'm hoping he will prescribe ultrasound tx.
Don't know anything about the suit, but it wouldn't surprise me.
I hope you get to feeling better, it is very frustrating, as we have enough to deal with without turning up with new problems!
Take care.
Linky
Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
I got slight achilles tendon pains, and I had tried backing down to a mere 1/8 pill after that. I thought I could avoid the pain and still get some of the drug in me.
But the pain caught up with me and was really scary, even on such a tiny amount. My llmd didn't even think that was possible since I hadn't reached blood level, or whatever.
It's been about 4 months, and I still get the pain, but it's much better than it was.
Once again, STOP TAKING ASAP whenever you feel the start of tendon pain on this rx. Don't try to push through.
Posts: 175 | From SW PA | Registered: Mar 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i took it for about 3-4 weeks. my legs hurt so bad i couldn't walk or even go up stairs.
i told my doc and he said "well it's so rare, it's not the levaquin" he finally switched when i threw a complete fit and said "i ain't taking it anymore. give me something else."
i still have problems with my legs over a year later. i never tore anything but it really hurt.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
My doctor thought I was herxing as the pain felt was just in my muscles at first. My back was also very painful. I continued to take the levaquin until I had a painful snap in my arm. That is when I quit taking it. My back is ok now but my arm still hurts. I went to physical therapy because I wanted ultrasound - got a few treatments but mostly exercises. It is not as bad but not better either. My rotater cuff (SP?) is affected. It is hard to sleep at night because I cannot lay down without it aching so I put 4 pillows behind me to sleep upright as possible.
What happens is the levaquin inhibits blood flow to the tendons, which already have very little blood flow, and they weaken. It has nothing to do with the bacteria. Some people have had a rupture after only days of use.
I will take a lot of vitamin C and more magnesium. I would encourage anyone taking this drug to quit using it at the first sign of any pain - not just pain in the joints.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Wow, this med sounds too brutal to use based on these experiences.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i know one person on another board who knows a lot about this
i found out from her that often the damage will be occuring but you don't feel it. then 2 or more months after stopping med you feel the pain
this happened with me from only 10 days of cipro
i seemed to have gotten better-very slowly-just not doing anything that hurts
i wouldn't count much on regular orthos helping...but maybe they can
i will see if i can post her contact info for you or get her to come here
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
ok-i emailed her-she may come here or may tell me i can post her email
she seems to thing what schaller wrote is important.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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I understand your comment about blood flow restriction within the context of inflammation --which may ocurr during treatment with acute cases of infection in the tendon AND adjacent soft tissue AND veins and arteries! So perhaps the possible flow restriction is a highly variable phenomenon.
I searched high & low for any references on this issue and found nothing. Can you post some links to back up your conclusion? That would be helpful. Thanks for bringing this up.
Also, I wonder about how many people have thick blood -- as evident by a simple blood test measuring INR. Many people with chronic infections have thicker blood (for many reasons). This is relevant as it can further impede blood flow.
Lastly, some types of no-flush niacin have helped some people with blood flow issues in the legs. I recently saw a generic formulation of NiaSafe(no flush) at CVS...I was shocked.
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I saw the information given about levaquin at two of the sites about the class action lawsuits against Johnson and Johnson. You can just google and they will come up right away.
There has been advertisements on TV with a 800 number for people affected by levaquin - getting tendon rupture and tendinitis. Evidently, the incidence of this happening is much more frequent than the label suggested. I certainly did not feel vulnerable.
Dr S recommends using HH capsules (Zhang's) at "a very high dose". I am now taking 12 capsules a day and will work up to 15. He says it works but you have to take it for a long time and it is very expensive. Levaquin is 10 dollars a day so it comes out to be about the same without the side effects.
*** Edited to remove LLMD name ***
[ 06-04-2009, 01:25 PM: Message edited by: Lou B ]
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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This is clearly a very risky drug and the FDA put the black box warning on it last year. You have to wonder with so many reported cases.
[ 06-04-2009, 12:33 PM: Message edited by: MarsyNY ]
Posts: 465 | From New York, NY | Registered: Aug 2005
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
I was on cipro in 2000 after my appendix burst (no idea what my IV abx were in hospital) and I'm not sure if it was the cirpo, but I felt AMAZINGLY happy for several weeks (didn't know I had Lyme back then).
I was only on cipro for about 3 weeks and didn't notice any tendon damage, but I know that it does and can happen.
posted
It tore me up soooo bad. I had to stop taking it. I still have some of the bottle in my cabinet.
Posts: 63 | From Hell - Or at least it feels like it, Oh, I mean Tampa, FL. OOOps! :D | Registered: May 2009
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posted
I now list quinolones as something I'm "allergic" to because Levaquin caused my sciatica to get worse. I was freaked out because I knew it could be that way permanently.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
never heard of
levaquin inhibits blood flow to the tendons
I would like to see that.
I believe thats its a bad drug but do the beneftis out weight the risks?
And who is to know who will be more effected by the side effects.
I saw on here that someone posted that extra MG can help.
I for one am only taking 20 mg at a time. I cant handle large doses.
Do you think that a small amount like that can cause damage?
I think the damage of the bacteria in my nervous system is much worse. At least thus far,.
However I would not like any tendon issues anyway. Ive had enough pain for 10 lives.
Posts: 2905 | From New England | Registered: Sep 2004
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
The following is a quote from one of the web sites for class action law suits against the makers of Levaquin.
Some researchers speculate that fluoroquinolones are toxic to tendon fibers and may decrease blood supply in tendons that already have a limited amount of blood supply.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
personally, i wouldn't touch any dosage with a 10 foot pole...period.
have you tried biaxin? it's great for lyme...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Some of these excerpts from your link are making sense! Thanks.
Bear in mind that we all have good ideas here; some are mentioned in the excerpts below. This issue is:
- evolving, fluid; - based on multiple factors (my point earlier); - that this medicine may be TOO strong/effective for some or many folks; - screening processes for such patients...where are they?! __________________________________
Pathogenesis of Fluoroquinolone Tendinopathy
The pathogenesis of quinolone-induced tendinopathy is considered to be multifactorial. Associated risk factors that have a bearing on the development of tendinopathy are listed in Box 1. Three theories postulating the causes of tendinopathy are ischemic influences, matrix degrading phenomenon, and toxic changes (Gold & Igra, 2003).
Summary
Apoptotic changes seen in tendon cells influenced by fluoroquinolone are compacted material in the cell nucleus, apoptotic bodies and bleb formation of the cell membrane, and edematous cellular organelles.
The matrix-degrading proteolytic interface and cellular changes are believed to initiate apoptosis, tendon cell death--the final pathway and pathogenesis of fluoroquinolone-induced tendinopathy (Gold & Igra, 2003; Sendzik et al., 2005).
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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