Topic: Would you take Levaquin again if it gave you tendonitis?
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Levaquin knocked my bart out but it gave me tendonitis after five weeks and I had to quit using it. I was in pain for 8 months before it cleared up. I took herbs because I couldn't tolerate any drugs after that - they all made me very dizzy - floxed I guess. I relapsed.
I started rifampin and biaxin in October last year, then switched to bactrim ds and biaxin. Then switched biaxin to zithro, sometimes roxithromycin. I added in tindamax twice a week. I was feeling a lot better but not completely well.
I was having a lot of trouble sleeping related to abx, I thought, so I took the abx four times a week for a month and again - relapsed!
I am currently back up to everyday and have added in rifampin once a day. The symptoms of needing to urinate three times a night is back. I also get cramps in odd places and my shins burn. I am worried the bart has developed resistance to this combo.
I am taking a lot of vitamin C and magnesium supplementation in case I dare take levaquin again. I fall into the higer risk group, being over 60 years old, and I have already had it once before. But i am desperate.
Do you know of anyone that has taken this drug and not gotten tendon problems again after getting it the first time?
I could also try plaquenil but if none of these lesser evils is going to get rid of the bart I am afraid that I am just creating a super monster more and more resistant to treatment.
-------------------- 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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posted
Have you thought about Cipro? It really helped my bart, and I'd like to start it again. I think its less likely to cause tendon problems than levaquin.
Posts: 490 | From TX- Go Cowboys! | Registered: Aug 2009
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nefferdun
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posted
I was wondering about cipro and factive. There are lawsuits against the makers of cipro as well as levaquin because of tendon issues. I don't know how bad factive it. Factive is supposed to be good against lyme also, I believe.
-------------------- 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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bcb1200
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posted
I thought the #2 choice behind Levaquin is Rifampin.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
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Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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Haley
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Member # 22008
posted
My fairly conservative doctor would only want me on Levaquin for 2 weeks (that was IV, so I don't know how he feels about oral Lev).
I asked him about the risk with ruptured tendons and Cipro. He said Cipro is nowhere near as dangerous as Levaquin. He has had patients on Cipro for a year.
I don't think ruptured tendons can be repaired so I would definitely use caution but I am not a doctor.
Posts: 2232 | From USA | Registered: Aug 2009
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I start Levaquin in September. I'm a bit nervous. I know most have no problem with it.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
No I would not.
I took Levaquin and it was a great drug for me, but I would not take it if it caused tendonitis previously.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Thanks you guys. I had just filled my months prescription when I got the tendonitis and it is still in the medicine cabinet but I have thought about throwing it out - all $300 of it.
I just feel at times like doing something drastic to try to get rid of this. It just goes on and on. Presently my shins are burning like crazy. Maybe that is the rifampin I added to the mix and a good thing. I will just take it until it runs out in a couple of weeks and see where that leaves me. It takes a month to make an appointment with the general practitioner to get more of anything. The good news is that I am not doing too badly mentally/emotionally.
I guess I will set up the appointment and then try to decide my next move. The nurse there is supposed to order a Fry test kit for me. Maybe that will be helpful.
Any other ideas of what I could try? I have plaquenil that I was supposed to take with the levaquin and never tried. If that worked I could ask the GP for more.
-------------------- 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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sutherngrl
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Member # 16270
posted
I would never take a medication once I had had a serious reaction to it. Its kind of like burning your hand on a hot stove......would you touch it a second time to see what might happen?
Its not worth it. There are other medications to try.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I would NOT take Levaquin after getting tendonitis while on it!
Other good meds for Bart include Rifampin, Mycobutin (somewhat like Rifampin), and Factive. I always discuss this type of thing with my LLMD.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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When started Levaquin, I immediately had tendon pain, but taking lots of C and Mag, I thought I would overcome it - which worked at first.
But after 4 weeks I had a complete breakdown. Not only all tendons and joints were severly inflamed, but also I got adverse reactions to all chemicals. And this means, that I can't tolerate ABX no more - to this day.
Posts: 269 | From Germany | Registered: Jul 2009
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nefferdun
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Member # 20157
posted
Thanks for the drug references. I was afraid there was nothing else to try.
I feel the bacteria has built resistance to everything I have used because although I was feeling very well, my symptoms are returning more and more. Last night I had to get up every two hours and my muscles are twitching with tingling. I had not had these symptoms for many months.
The GP doctor gave me "a years's supply" of bactrim and zithro with instructions to get a liver test "once a year"or whenever I felt like it! He does not know anything about lyme so I have to tell him what to do. He gets irritated, grabs his script pad, fills in the drugs I suggest and leaves. I feel I am completely alone in this. He is the person that suggested I take levaquin again telling me I probably did not get tendonitis from it as that is too rare - just like it is too rare for me to have lyme. He is the only doctor in the area that will give me long term abx. He is "open minded" also being the primary provider of medical marijuana cards (which I have declined twice).
So depressing.
-------------------- 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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nefferdun
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Member # 20157
posted
Kadee, that is what happened to me and it makes it clear in my mind when you express the same experience. I thought it was a herx and even the LLMD doctor I traveled 500 miles to see told me to keep taking it. I had a snap in my shoulder that was obviously not herx related and quit, but the damage was done.
Everything the LLMD prescribed after that I could not tolerate. I was completely chemically insensitive. When I asked him to recommend herbs he told me I would have to go back to Seattle to see his partner.
So I took herbs for 8 months in extremely high doses. Spring and summer seems to be my up times and then I worsen as the days shorten. That is what is happening now. Anyway, I started to deteriorate after five months (which is amazing I lasted that long) and then hit bottom in late fall which is when I got out the old prescriptions finding I could tolerate them.
What helps you since you quit abx? It is so scary to think about using up every single drug and the bacteria becoming a super monster resistant to everything - then what.
-------------------- 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 would relate to Dr.B's statement, where he advised not to take chloroquin before Levaquin (treating Babesia before Barts), because he had noticed, that Levaquin didn't help sometimes after Chloroquin.
Posts: 269 | From Germany | Registered: Jul 2009
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My Levaquin treatment was 7 months ago. After I was first very bad off, then I started to get better. My Bart symptoms too! I had expected the opposite.
But every day I ask myself, how long will this last. I started rifing now, but not yet long enough that I could tell, if it does something.
Posts: 269 | From Germany | Registered: Jul 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
So you got better, doing nothing? Sometimes I wonder if this stuff does not just get better on it's own in the spring/summer. It is winter when I feel the worse, with or without drugs.
-------------------- 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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posted
Yes, it seems like. Headache is gone, insomnia is gone, lung problems gone, lymph node pain is gone. Only the skin of my legs has worsened with bleedings under the surface and lots of red dots on the trunk.
I'm afraid it will come back in wintertime.
Posts: 269 | From Germany | Registered: Jul 2009
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quote:Originally posted by nefferdun: Everything the LLMD prescribed after that I could not tolerate. I was completely chemically insensitive.
What was happening in terms of the drug reactions? And it seems you can tolerate antibiotics now? What changed to allow you to get back on antibiotics.
Posts: 526 | From NJ | Registered: May 2007
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nefferdun
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Member # 20157
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I don't know what changed. I was using a lot of supplements and herbs and maybe it helped me detox. I was doing well for five months during spring and early summer, then relapsed as the days got shorter.
by October I was a mess and i just got up in the middle of the night, - not being able to sleep and having shin pain- and went to the medicine cabinet. I took a Rifampin to see what would happen. Before it made me dizzy and gave me a headache and nausea. I was ok with it so I took one once a day, then went to two a day, then added biaxin. I took almost a month to build up to the full dose, being very paranoid of what would happen.
I was ok with it and still am which I am grateful for. When I took Ketek, another powerful drug, I had to quit it after a couple of months but it did not affect my reaction to other chemicals like levaquin did.
I have a love hate relationship with levaquin. It nearly cured me even though it really hurt me. I was in pain for 8 months. The pain was so bad in my shoulder that I had to sleep sitting up. They believe the damage is caused from lack of circulation and for some reason laying down was impossible during that time - maybe affected the circulation, who knows.]
Amino acids helped that pain so I believe anyone taking levaquin should also take lysine and methionine to prevent damage.
The reason I can consider it again is because it is not as bad as the mental emotional dumpster bart puts me in. I can tolerate pain better than feeling like a zombie.
-------------------- 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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