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» LymeNet Flash » Questions and Discussion » Medical Questions » Cipro - Afraid to take it

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Author Topic: Cipro - Afraid to take it
fourwinds
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I have been having severe gastro issues off and on since I started taking Bactrim Ds in June.

I've stopped and restarted it twice.... my gut just doesn't seem to be able to tolerate it anymore.

My doctor is aware I REALLY do not want to take Cipro but would like me to try it.... my inner voice is still telling me "no".

I am currently on Malarone, Azith and Tindamax.. she wants the Cipro added in at 500 two times per day.

I know we each have to make our own decisions but have any of you felt its been worth the risk?

Did you ensure you took extra magnesium?

I have done a "search" here but haven't really found a lot of input.

I appreciate hearing what others have experienced. Thx.!

Posts: 396 | From EAPennsylvania | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
TF
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You may want to look at this thread:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/120577?

pme goes to a top notch lyme doctor. I believe she was given excellent advice by her doc.

If you consider your lyme doctor a good doctor, then try the cipro. I would take extra mag while on it.

I took Levaquin for a month. That's how I got rid of bart. Followed that up with Bactrim DS for 11 months also.

I did weightlifting while on the Levaquin. I didn't take mag. (They didn't know you could take mag back then while on Levaquin.) I had zero issues with the Levaquin.

So, you will never know unless you try. You can always back off or totally stop if you get a bad reaction.

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Ellen101
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My LLNP wanted me to try levaquin and I was afraid to do so as well. I feel there are alot of other options out there and unfortunately the side effects from floroquinilones can be permanent. http://well.blogs.nytimes.com/2012/09/10/popular-antibiotics-may-carry-serious-side-effects/
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triathletelymie
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I took cipro last summer/2011, which gave me a little improvement. Because of the perceived improvement, I started to work out again...probably a little too much, actually. I started playing tennis again and running. THEN, and only then, did I have some tendon pain. So, my LLMD had me stop the cipro, which caused me to backslide quite a bit. But, the tendon problems, over several weeks, off of the cipro, totally abated/was not permanent damage or anything. In hindsight, I probably should've stuck with the cipro/fluoroquinolone, but just stopped working out.

Fast forward to a year later...different/ aggressive LLMD. He put me back on a fluoroquinolone...levaquin, actually...and told me NO working out AT ALL! Walking is about it. Quite honestly, though, I had backslid so much since last summer (2011), that I didn't even have the ability to workout too much really anyway. I had no tendon issues what-so-ever. I had been on it for several months, and he has now switched me back to cipro/my original fluoroquinolone and, again, no tendon issues.

I, also, had been taking a low dose of magnesium the entire time, but did not increase it/nor was told to by either LLMD when I started the fluoroquinolones.

So, for me at least, the tendon issues associated with the fluoroquinolones appeared to only occur with physical activity directly affecting tendon use. But...that is just me. I do know of others that have had tendon issues, even with no exercise.

I would just be cautious and voice your concerns with your doc. Perhaps you could just "test the waters" and start slow with the fluoroquinolones with the resultant option being to stop the drug at the first sign of trouble.

Good luck!

~tri

--------------------
? date of bite/no rash
10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests
CDC+ 23/39/41/45/58/66/93
currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements

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fourwinds
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Thanks everyone.... I knew there was a reason my litle inner voice was speaking....

I researched and found if you take corticosteriods (Cortef in my case) with Cipro it increases the chances of problems. As well as C. Diff. and gastro issues.

I guess if it's not one thing it's another..

Considering my gut is one of my bigger problems right now, I think I'm going to concentrate on yeast and getting my gut in control, while staying on the current ABX.

I'm sure I have Bart in the gut and some of my problems may be because of that.

I am working with a top doc (NP) in DC.. but at this point am not going to risk it.

I was given Levaquin in 2007 when I first became ill and my right knee blew up like a small ball, and I had pain all over my body and was very very toxic from it. I felt like I was dying...

This was, of course, before I knew I had Lyme and co's so was probably a major herx.

I am just not comfortable (right now anyway) taking a fluoroquinolone so am going to email her to see what we can do.

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Mathias
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Everyone has to make their own decision based on consultation with your personal doctor. For me, Floroquinlones were a life saver. I was on Levaquin, Cipro and Factive at different times and for different durations and I never had an adverse reaction to any of them. I believe I would have never gotten better without them.

--------------------
Mathias

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minimonkey
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I found levaquin really helpful, too. I was careful not to stress my tendons while on it, though... and I did still get tendonitis, which thankfully was not permanent.

I found the herxing from it pretty intense.

--------------------
"Looks like freedom but it feels like death..
It's something in between, I guess"

Leonard Cohen, from the song "Closing Time"

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randibear
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sometimes that little voice inside says softly "you better not" and othertimes it screams "you idiot, wth are you doing?"

and you'd better listen.

--------------------
do not look back when the only course is forward

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fourwinds
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quote:
Originally posted by randibear:
sometimes that little voice inside says softly "you better not" and othertimes it screams "you idiot, wth are you doing?"

and you'd better listen.

Randibear, I LIKE that [Smile]
Posts: 396 | From EAPennsylvania | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
fourwinds
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Are any of you who have taken Levaquin or Cipro on Cortef as well???
Posts: 396 | From EAPennsylvania | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Kudzuslipper
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I just have to say cipro with flagyl is a miracle combo for me. not flagyl alone. I got quite achy after 4 months of cipro so stopped--- just in case. but the combo is great for gut issues as well. and just recently I have read that gut issues can actually be bart. good luck what ever you decide.
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WPinVA
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I have taken Avelox (in the same family as Cipro) with prednisone several times for sinus infections pre-Lyme. And again took the same combo when I had Lyme but had not yet been properly diagnosed. Obviously, the prednisone was awful for me and is probably the biggest reason my Lyme is so severe and persistent.

But I never had tendon problems with the Avelox. I did not work out at all while on it, nothing more than walking. I did feel really jumpy at times, and the last time I was on it I had very odd, violent, vivid dreams. I now think that was probably a herx from my then-undiagnosed Bart.

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pme
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OK...I just typed a whole reply and it disappeared.

TF made reference to the fact that I am taking cipro.

WAS taking cipro.

I haven't really posted, I knew it was helping at first, then I herxed hard, then I had more and more good days (was on it for about 7 weeks). Finally up through last weekend I had 10 good days in a row.

As I had those 10 good days though my shoulder pain (which I had had before cipro) got pretty intense (PT says tendonitis). I figured I would rather have my mind clear than the use of my right arm. But, on Wed my shoulder popped and I had intense pain that I have had ever since.

I had to stop after that, it seemed to risky to take it.

So......it was very effective but I am not sure if I tore my rotator cuff. I am trying get info from my dr and my PT to see what's next.

Today I am frustrated because I can't take rifampin or sulfa because of allergic reactions.

Cipro was so helpful (headaches went away within the first 24 hours).

I think it is worth the risk if you are careful. My problem was that I already had shoulder pain before so its' not like I could tell what was cipro and what was pre existing shoulder pain before it got super intense.

PM me with any questions, I haven't been here a lot lately

--------------------
Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009)
Dx with chronic Lyme May 2011.
LLMD April 2012, Treating with omnicef/zith
Lots of supplements!

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lax mom
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Even if your Dr is the best there is, I would still listen to your inner voice.

I wish I had when my body was screaming "all of the meds are killing me!!!". But, since my LLMD was the best of the best, I ignored my own intuition.

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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fourwinds
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I suppose some of the information out in cyberspace may be over hype, and I don't wish to instill fear,

but I did find this link/page interesting in that it states it is a synthetic chemotherapeutic drug,

works against bacterial DNA, but also doesn't

differentiate good from bad DNA.... scarey.

http://www.ciproispoison.com/

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pme
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I just wanted to chime in on the listening to your gut issue

My llmd first prescribed rifampin, but I didn't feel right about it. I procrastinated starting it for about 3 weeks and when I did I ended up having an allergic reaction (first dose).

So she prescribed cipro. I had a really good gut feeling about the cipro, so i did take it and really did try to monitor any tendon issues closely. I am glad i took it.

I wanted to post that because you definitely read the bad stuff about cipro a lot when you do a search.

The only reason I couldn't tell that I was having tendon issues was that I had shoulder issues prior to beginning cipro, so until that felt different/worse I really didn't think I should attribute the issue to cipro.

I have been off for 6 days and have had some headaches, but now that I think about it maybe the cipro did its job. I am better than I was before starting it.

That being said my PT said he thought I might have a tear in my rotator cuff and is ordering an MRI. So maybe its just that the cipro affected the weaker joint to begin with. If you have a problem/pain in a particular area then watch that area carefully when taking cipro.

Even if it is a tear I feel like it is ok because the medical community can help me with that, as opposed to having to chase down answers for many years as i had to to begin to get the Bart under control

I will keep you all posted. Its not all bad news, though there are many bumps in the road.

--------------------
Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009)
Dx with chronic Lyme May 2011.
LLMD April 2012, Treating with omnicef/zith
Lots of supplements!

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