angela70
Posted , 3 users are following.
Hello - I wish to discuss my recurrent UTI's which have plagued me like many of you for years. I had them when I was a young woman, then they started again post-menopause. I am now 70 and been suffering all this year with relapsing recurring infections. My GP gives me antibiotics and always gives me Trimethoprim for 3 days first, despite the fact that I was put on this drug as a preventative some years ago and it did not even prevent them! I am allergic to penicillin, so next has been nitrofurentaine. This makes me very ill, so I have refused this and been given Cephalexin for 10 days. This did not shift it so Dr gave me another course of Cephalexin for 7 days. This failed and yet I was back and to to surgery with urine samples and they told me it was clear. The infection was caused by e-coli. I then and went on holiday to Majorca on 10th May and the day after I arrived it started again. I had my E111 card so went to medical centre there where Dr examined me, tested my urine in surgery and told me it was very positive. He thought I then had a kidney infection and gave me Ciproflaxin - 7 day course. Spoiled my holiday as I dare not swim in hotel pool for fear of spreading infection, and felt really poorly. No bladder control and then got sunburnned lying by the pool! Information was in Spanish so I could not understand warnings about care in the sun! Temperature and sickness.
When I got home I completed course and waited a week before seeing my GP again with another sample for testing. She told me that my surgery never prescribes Cipro because it is very strong and can lead to further bug resistance and has many side effects. I am now clear but wonder what she would have done if I had gone back to my surgery - I had exhausted all the antibiotics they use there! Would she have let me die? It was clearly a superbug. I know that if it recurrs again I will go to A and E and get antibiotics on a drip. I cannot go through this again - Hell! Please comment - what do you do? Has anyone else had Cipro? And when we leave EU no more E111 card I expect.
0 likes, 10 replies
lynda20916 angela34463
Posted
Hi Angela,
Sorry you're dealing with this. I think you might need a referral to a Urologist! It is one thing to test whether there is an infection; it is another to do a culture of your urine to determine what bacteria is responsible and what type of antibiotic should be used to treat you.
There are several different strains of bacteria that are responsible for UTI's. The fact that your gp gives you the same antibiotics over and over without testiing whether the bacteria causing the infection will be killed or reduced doesn't seem reasonable to me. Such information is readily available to medical professionals.
Cipro is a broad spectrum antibiotic that is extremely powerful. It's very popular in the US, especially for treating UTI's. It also has several side effects that are concerning. I have had Cipro recently to treat a UTI caused by enterobacter. Two months earlier, I was given nitrofurantoin to treat a UTI caused by e-coli. In both instances, my doctor cultured my urine sample to make sure that the antibiotic I was given would clear the infection.
It may not be that you had a superbug (though i know you were miserable). What could have happened was that the antibiotic you were given was not effective against the bacteria you were originally infected with. And, because it was ineffective the bacteria continued to multiply and affected your kidneys.
Women try several means to avoid UTI's including drinking at least 64 ounces of water a day and taking cranberry capsules and probiotics. Some also try using vaginal lubricants to minimize vaginitis, which is thought to contribute to UTI's. I am currently doing all of this...and I hope it works.
Take care, xx
angela34463 lynda20916
Posted
Thank you lynda for your reply. The doctors (we can't pick and choose) did test my urine sample a couple of times (they have to be sent away to a path lab so it is a few days before they get the results), but they did identify e-coli. Maybe there are different strains or strengths .I am sure you are right about the bacteria multiplying as I waited for results and a new prescription after Trimotheprim failed,before the Cefalexin became active. But I told them trimothprim would not cure it as I had been given a course of this as a preventative before and it did not even prevent! They simply told me it was protocol at my surgery to prescribe this Trimotheprim as a first line antibiotic for water infections. I feel the time this wasted led my infection to become more severe. For the last course of cefalexin the doctor simply looked at my sample in the surgery, told me it had a very high white cell count and I still had an infection (as if I didn't know about it, I was in agony by then!) I have been drinking gallons of water throughout, but still got thrush.
Unfortunately in my case, I had had many nasty conditions since Christmas - bronchitis (for which I had doxycyline plus steroids as I'm asthmatic,) the the same again for sinusitus, and then in about February Cystitis, when I had the Trimethoprim for the first time this year (whilst asking for something else), and then eventually getting cefalexin. That also was an e-coli infection. So I've been on antibiotic overload for nearly six months. Would the doctor have referred me to hospital this time if the only drug they could offer me was cefalexin? I take all your knowledge of ciprofloxacin very seriously, and am sure my GPs have really tried to help me get better, as well as good reason to decide not to prescribe Cipro. The last time I had an infection like this the doctor actually referred me to A and E and, yes, they gave me cipro!
That was about seven or eight years ago, so maybe not as much was known about it then.
I must admit I feel absolutely drained and have some strange feelings in my fingers and toes - some numbness and lack of feeling, as well as pain which I think is inflammation in my abdomen, back and groin areas which can be severe - usually at night time. One doctor let me have tramadol (I asked for it), but the principal partner refused to put it on prescription as it is addictive. As I already have codeine sulphate 30mg which I was advised to take continuously with paracetamol for arthritis in my spine,, I mentiond this and asked what the difference was. She just said 'we sometimes have to do that' which did not make sense to me. The problem I find is that codeine is extremely constipating and I felt worse when I was taking it, but I believe that is just as addictive!
I'd better buy cranberry capsules. I don't have a sex life at the moment as I have been a widow for 2 and a half years. Will still go to A and E next time even though I vowed never to do that before.
Thanks again lynda - you've been very helpful to a demic like me!
You take care XXX
lynda20916 angela34463
Posted
angela34463 lynda20916
Posted
I will take some probiotics as you suggest, but do you know which type might be best? I have tried Yakhult before but is there a better one ? I will look in the Health Store. You are so helpfiul, Thanks AngelaXXX
lynda20916 angela34463
Posted
Hi Angela,
I will send you a private e-mail with the name of the products I'm taking, and what they contain.
The most important thing to know is that the probiotics need to be able to withstand the acid in your stomach, or taking them is useless. xx Lynda
miriam65408 angela34463
Posted
Hi Angela,
Cipro is very strong and can have some very nasty side effects - some of which can be very long lasting and others that only start weeks or months after you have finished the course! The European Medicines Authority (like the FDA in the US) are currently reviewing the use of Cipro and it's siblings (they're collectively called Quinolones or Fluoroquinolones in the US). Some countries, as you've found, hand them out more readily than others - here in the UK they've restricted their use because they can encourage C.diff to grow in the intestine, not nice! It's a pity they don't restrict them because of the side effects too.
In the UK you would probably not have been given Cipro because of your age - over 60's are more prone to tendon damage! If you have any aches and pains in your muscles and joints at all be very careful not to do any strenuous activity as you will be in danger of more damage for a few months yet. You've already learnt that you shouldn't have been out in the sun - do be careful of increased sensitivity continuing this summer at least (shame when the weather is so nice!).
Another thing to be wary of is taking Ibuprofen or any NSAID as a painkiller - these can kick off symptoms that you haven't even experienced yet, and I'm not kidding! Corticosteroids can have the same effect.
Finally - if you do go to A&E for IV antibiotics, make sure they don't give you Cipro again (or another Quinolone). You may be ok this time round but another course could do permanent damage. I'm not trying to scare you but to warn you of what is a very real danger.
Check out this tread started here by the moderator for more info:
https://patient.info/forums/discuss/fluoroquinolone-toxicity-syndrome-427305
Good luck and be careful!
Miriam
lynda20916 miriam65408
Posted
All good advice! Thank you xx
angela34463 miriam65408
Posted
Hi. miriam, thanks for your very kind reply. I've just replied to lynda20916 so please read my reply to her as well I take the point you make about Cipro. I have had Cipro once before about 7 or 8 years ago, when perhaps less was known about it, but yes I already have plenty of aches and pains in my muscles and joints as I have arthritis in my lower spine and spondylosis in my cervical vertebrae - discs 3, 4, 5 and 6, but I suppose this is age related, (yes I'm a bit of aa demic!) I will definitely heed your advice, thanks. Now understand the sun sensitivity, so will be very careful. I do know that I shouldn't take ibuprofin or NSAIDs as I have had gastritis and acid reflux in the past! I WONDER WHAT THOSE unknown symptoms YOU MENTION MIGHT BE?....... i FEEL THE DOCTORS HAVE TRIED TO HELP ME BUT i HAVE JUST BEEN VERY UNLUCKY. Sorry no need for caps lock. As you will see from my reply to lynda, I have just had a .... year so far with one infection after another. I am hoping I will be OK for a while now, but if I do start with this again, I will avoid Cipro, but I think I will still go to A and E rather than spend nearly four months trying to get rid of it via the G>P> route. I think years ago they might well have referred me much earlier, but I gues the cuts to the NHS are really biting now, so they are loathe to refer you. In my G>P> surgery, there are two principal doctors who are in charge of their surgery's budget, with a team of full and part time doctors also working there. Perhaps they would get charged for a referral,for which notices in the surgery tell you how much it costs, whereas if you refer yourself then it won't come out of the practice's budget, do you think?
The other difference I noted when visiting a medical centre in Majorca, was that besides doctors, nurses and admin staff, they had all the facilities for testing urine/blood samples there on the premises, with their own lab. staff. Can it be that our Health Service is falling behind countries like Spain? Just a thought.
Thanks, Miriam for replying with lots of valuable suggestions, and also Lynda.
Angela XXX
Take care of yourself, Angela
miriam65408 angela34463
Posted
Hi Angela,
sorry, I didn't mean to sound scary or mysterious when I said about possible delayed symptoms that you haven't experience yet (the unknown symptoms!). It's just that people have reported a whole list of stuff like neuropathy, pain in various places - or all over, stomach problems, eye or ear problems, anxiety, insomnia etc, etc. That's why I suggested checking the link I gave as there are some quite good discussions and explanations there (you'll see me on there too!).
It's very interesting that the med centre had its own lab for testing blood and urine. I can't see that it would be any quicker though as a culture takes as long as it takes to grow - these things can't be hurried!
My main concern was to warn you not to take this class of drugs again. I hope any future problems can be sorted by giving you the correct antibiotic, not a broad-spectrum kill-anything quick-fix poison like Cipro!
angela34463 miriam65408
Posted
Hi Miriam,
Thanks for your reply again. I did look up your link re: Cipro and do not want to take this again. I am having some neuropathy in my feet and legs, pains in my abdomen , groin and lower back. I take paracetamol (I have been prescribed codeine sulphate to take with paracetamol), but all it does is 'bung me up'. I saw one doctor who let me have tramadol for the severe pain, but when I saw one of the two chief partners at the practice, she wouldn't put it on prescription because she told me is is addictive! I only take one tabletr per day - in the evening when paracetamol does not help at all. She must think I'm 'a druggy' looking for a mild kick! The doctors all view me now as 'a bloody nuisance' I'm sure, and look at me as though I'm 'gone out'. I don't think they can believe I still have or had an infection that has only given me three weeks synptom free this year.
As I said, the cipro came from a doctor in Majorca, and I thought it had cured it. Last urine sample result (last Thuursday) was clear but today it has started stinging again when I pass water. Just wondering what they will try next, as I seem to have exhausted their usual antibiotics apart from penicillin, which I am allergetic too!
Fingers crossed that I am not starting again, but undecided what to do if I am.
Thank you for all your help Miriam, Angela