posted
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.
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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posted
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 ]
Posts: 386 | From Southeastern PA | Registered: Oct 2007
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posted
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.
Posts: 47 | From Texas | Registered: Oct 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
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.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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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.
Posts: 269 | From Germany | Registered: Jul 2009
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
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
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
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??
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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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.
Posts: 269 | From Germany | Registered: Jul 2009
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I think it is worth trying. Or try Factive which has less risk of tendon damage.
-------------------- 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: 3134 | From Massachusetts | Registered: May 2010
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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.
Levaquin? Yes, be afraid. Be very afraid.
-------------------- -chaps �Listen to the bell, Borrelia. It tolls for thee!� Posts: 631 | From A little place called, "we'll see." | Registered: Apr 2010
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