for some reason I just cannot shake fear of taking this when LLND is eager to use it for 30-60 days to knock down the bart.
words of wisdom anyone?
So far I have taken rifampin, clarithromycin, plaquenil, and biaxim in various combos.
Not without cautious watchfulness but so far so good since last summer. Improving a lot -in cycles.
I still have persistent neuro symptoms in lower body but head stuff is gone. Used to think it was lyme but now think it is bart as LLND hits bart harder, seems to be slight cyclical improvement.
Bart is on the run now with herxes and improvement on second month of rifampin (second time) + biaxim
also take a full herbal, detox, probiotics, homeopathic, supplement and diet regimen.
Have clear kidney and liver tests.
Posted by thomasx (Member # 13431) on :
I took Levaquin and it helped a lot. My doc instructed me to watch for any tendon problems and needed to take magnesium, etc. along with. Did a long enough course without any problems. My two cents. Obviously you need to be guided by your doc in this.
[ 04-19-2011, 09:14 AM: Message edited by: thomasx ]
Posted by tiredmom21 (Member # 28479) on :
I have been to afraid to take levaquin myself. I read far too much on the fqresearch.org website thanks to someone posting it here.
I even joined a yahoo group for patients who had been floxed and I will likely never be able to take after reading all I've read.
To me the symptoms of being floxed are so similar to what I am already experiencing. Only those folks often have more intense symptoms and it is often permanent it seems.
I am hoping to one day get rid of my symptoms so mentally I cannot take that stuff. I know its an extreme hangup and it drives my llmd crazy, but that's just where I am.
Posted by ktkdommer (Member # 29020) on :
I've been on levaquin three months now with no issues. I took magnesium for a week before with extra C and still do that today. I watch what I do so that I don't do any weird fast movements.
Posted by kadee (Member # 21199) on :
quote:words of wisdom anyone?
I hesitated a long time to take it. Then I finally did - and got floxed, even though I had prepared with lots of magnesium and Vit C. One really bad result was/is: I cannot tolerate ABX any more. I'm almost sixty, which is an age, where the danger of being floxed is increasing. Sorry, no words of wisdom. It's Russian Roulette.
Posted by tdtid (Member # 10276) on :
I can definitely relate to the fears since I recall when I was first put on Cipro (in the same family, although I did Levequin at a different time in my treatment)I was scared silly.
I think we read some of the bad stories and since many of us already have anxiety due to this disease, it doesn't help much.
I remember having something bordering on a panic attack when I was going to SWALLOW the first pill. Realistically, nothing would happen right after swallowing it, but I wasn't thinking with a clear head with all the brain fog either.
For me....it was an amazing drug. I do know that people that it has helped, can't say enough good about it but you never know how YOU are going to react to it.
Basically as stated earlier, watch for tendon issues and call your doctor if you have any of those, but I guess I reached the point that I knew my Doctor had gotten me so much improvement, that I needed to just trust him.
Good luck to you and keep us posted.
Cathy
Posted by erikjh1972 (Member # 20964) on :
Do you want to get better with minimal risk?? or do you want to stay sick??
words of wisdom??? take it and dont worry about it.
its risk vs. reward. if tendons were poping all over town do you really think it would still be perscribed??
Posted by kadee (Member # 21199) on :
quote: its risk vs. reward. if tendons were poping all over town do you really think it would still be perscribed??
The problem is: The damages show up often later, where nobody assigns them to the chinolones anymore.
Posted by bcb1200 (Member # 25745) on :
I think it is worth trying. Or try Factive which has less risk of tendon damage.
Posted by chaps (Member # 25286) on :
quote: I watch what I do so that I don't do any weird fast movements.
It doesn't matter. Levaquin can cause tendons to pop spontaneously even while the patient is sleeping.
quote: if tendons were poping all over town do you really think it would still be perscribed??
YES! Chemotherapy kills people faster than cancer does, and they're still prescribing that all over the place. That question sounds like it came right out of a doctor's mouth.