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.
Posted by txgirl09 (Member # 21612) on :
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.
Posted by nefferdun (Member # 20157) on :
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.
Posted by bcb1200 (Member # 25745) on :
I thought the #2 choice behind Levaquin is Rifampin.
Posted by Haley (Member # 22008) on :
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.
Posted by bcb1200 (Member # 25745) on :
I start Levaquin in September. I'm a bit nervous. I know most have no problem with it.
Posted by sixgoofykids (Member # 11141) on :
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.
Posted by nefferdun (Member # 20157) on :
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.
Posted by sutherngrl (Member # 16270) on :
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.
Posted by lymednva (Member # 9098) on :
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.
Posted by Amelia (Member # 17677) on :
The drugs that I felt really got to my bart were
Bactrim DS/mycobutin and minocycline. I would not
risk tendonitis damage. My pt told me it can be
long-term. Best of luck to you with all of this.
Lots of folks here seem to have shaken Bart with
other combos like the ones referred to and I would
say searching under Bart would help too.
Hang in there!
Posted by kadee (Member # 21199) on :
I personally would not take it!
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.
Posted by nefferdun (Member # 20157) on :
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.
Posted by nefferdun (Member # 20157) on :
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.
Posted by kadee (Member # 21199) on :
Sorry, you are in such a bad situation.
As to the chloroquin, I just read about a disturbing study:
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.
Posted by kadee (Member # 21199) on :
quote: What helps you since you quit abx?
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.
Posted by nefferdun (Member # 20157) on :
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.
Posted by kadee (Member # 21199) on :
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.
Posted by radfaraf (Member # 11909) on :
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.
Posted by nefferdun (Member # 20157) on :
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.
![[Frown]](frown.gif)