Taken Cipro Over 50 Times

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My name is Susan Sandberg and I am (was) a healthy 66 year old woman. All of my life I have been afflicted with frequent UTIs--no matter the holistic and medical things I tried--all the teas, the cranberry tablets, extra cleanliness measures, etc, etc, etc--I still got them with great frequency (I am also not sexually active--a frequent causation for women), at least 4-5 times a year, sometimes more. I am allergic to sulfa drugs (a simple and harmless cure for UTIs), so my "only alternative", according to my doctors, was Cipro. Let me point out that in me, a UTI means searing, fiery pain that is debilitating--nausea, fevers, and sweats--the only thing I could do is sit and rock back and forth, holding my lower belly, moaning and crying. NO TREATMENT EXCEPT ANTIBIOTICS WOULD RID ME OF THE INFECTION. Every. single. time. One urologist (I've been to many) actually put me on a low dosage of macrobid for a year...no infections that whole year, and for 7 years after!!! But they returned with a vengeance, to say the least. I never found another Dr who would do that for me again. In trying to figure this math, I did a rough count of just the last ten years--and my estimation is that I took a full course of Cipro at least 50 times in those years. This is NOT an exaggeration, and may indeed be low. 

Believe it or not, I did not notice any effect until the last 2-3 years...except for being overweight, I was an active, always-moving teacher. Then...I began to experience terrible pain in my joints--especially my arms between the shoulder and elbow, my hips, and my legs. I had (have) almost complete exhaustion--by the time I got ready for work, I was so tired it took a huge act of sheer will to go out the door. And to me, the worst of all is this: I cannot walk!!! I can make it for say 300 feet--and then I literally collapse onto the ground like a drunk monkey. I have twice gone to the floor in airports--so embarrasing, everyone assumes you are intoxicated when this happens! Of all these awful things, that one distresses me the most. (Never had alcohol in my life, or smoked.) It was awful--and I went from Dr to Dr to discover the cause; not to mention I had every medical test known to mankind at least twice--and they all came back normal. Over and over I heard this: "Susan, there's nothing wrong with you. I suggest a good therapist." Be aware that I am almost fearless about pain--three ten-pound babies with no pain relief of any kind, I walked around with a broken back from a fall on the ice for three weeks (L2 broken clean through, both sides) before I finally got it diagnosed and repaired--and for those of you who say "that's impossible", you'd be wrong--you can do it, if you're willing to ignore a crap-load of pain. That's only the start, really. Seriously, I'm a legend at my doctor's office. So don't tell me I'm "imagining things". I am trying so hard to live a normal life--this forced me into retirement but I still try to stay very busy with church work and service. Now I'm at a standstill--my family is impatient with my "constant complaining"--they all beleive if the Drs say there's nothing wrong with  you, then there ISN'T. They are nice to me but I'm being avoided. I'd avoid me too, if I could. I know it is the Cipro that has done this to me...I have not one shred of doubt, and after reading many of these stories that happened from one dose, I'm surprised I'm alive. I think my GP believes this; she's just doesn't know what to do. It feels good jut to be able to say this...thanks for listening. 

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  • Posted

    Hi Susan,  you've read the stories so you know it IS the Cipro that's caused your problems. What's bothering you (and me!) is the amount you've taken compared to most people who are affected by just a couple of courses or even a couple of tablets.

    It's well known that different people have different tolerance thresholds.  This is believed to be for several reasons - the main one is the amount of toxins, especially fluorine (from fluoride-containing drugs and foods) that are already putting the body under stress. I have heard of people taking many courses like you with no apparent ill-effect and can only stand back in amazement! I wonder if you possibly have had some aches and pains before but not noticed because of your high pain threshold?  Whatever happened, you finally reached your tolerance level and here you are.

    You mention your GP so are you in the UK?  She probably is at a complete loss as there is no known cure - recommended or otherwise.  Her training will have mentioned 'rare' side effects and most doctors I have heard about believe they are so rare that when someone says they've got joint pains they're just told to keep taking the tablets.

    If you click on this link it will take you to a discussion on this topic which was started by the moderator.  He gives addresses of useful websites (we can't give addresses in these posts) both in the US and the UK.  Hopefully they will tell you a lot more about what ahs happened to you and give tips on how to help yourself. 

    http://patient.info/forums/discuss/fluoroquinolone-toxicity-syndrome-427305

    Reading the rest of the discussions in this topic (some are very long and span several years!)  will also help build your knowledge - it's just a pity more doctors don't read all this.

    You're certainly not alone and there are people here and elsewhere who do understand. 

    Good luck!

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    • Posted

      Hi Miriam--thank you so much for your reply! I'm actually in Ohio, USA. My GP is my family doctor--i call her that to differentiate her from the many specialists I've been to. You know, it does seem like I've had annoying little aches and pains for years...I always thought it was just from getting older. I hate meds--I'd do anything to avoid them--so I actually only take a low-dosage Mobic for the pain. My Dr keeps trying to give me heavy narcotics, but I have refused--i have a life, and I do not want to be "doped up". Thank you so much for the info. I will check all of it out.

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  • Posted

    Hi Susan

    I am so sorry to hear if your extreme fatigue that has been caused by your cipro medication . Firstly there are a number of minerals and vitamins you need to start taking to replace what the cipro has chelated from you . The first wil be magnesium and you can buy this in liquid form from amazon . The other is B12 . You most probably have no B12 this can cause extreme fatigue and depression . My husband had practically zero B12. And now has 3 monthly injections . I did hear that some ladies suffer with a ccindition where their urethra is too short and this can lead to problems . Have you had MRI on your urethra? I can suggest a lovely doctor called Katherine Fu who we see at one stop doctors who is very sympathetic for floxies and will suggest test that you can have done to make sure your body has all the necessary vits and mins to help your recovery .

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    • Posted

      Thank you Gillian. I will order the magnesium and B12 today...or ask my GP for the injections. At this point I will try anything! Thanks again.
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    • Posted

      Hi Susan. I forgot to tell you that you will also need a very good course of probiotics as the cipro and all other antibiotics would have destroyed all the good flora from your gut and could possibly left you with candida of the gut. What happens is , the antibiotic destroys all the bad and the good and where the good was yeast sets up home and this can lead to joint problems fatigue and other issues . So start on a very good probiotic . Ask a good naturepath to suggest. Without doubt you will have a yeast overload
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