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Whiterose

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Reply with quote  #1 
Hi everyone,

I'm 63 years old, and been prone to cystitis most of my adult life. 13 years ago referred to a urologist, as I had all symptoms of renal colic. No renal calculus found, but put on prophylactic nitrofurantoin 50mgs at night...which I remained on ever since. It did work pretty well...maybe a couple of UTI's a year, which were swiftly dealt with with alternative antibiotic.

However for almost 5 months have been plagued by recurrent cystitis. As a nurse, I've taken all the precautions mentioned on your website...but bit fed up by now. Am allergic to trimithroprim.

Am now being referred to urologist. Currently have yet another UTI's but GP run out of antibiotic ideas. Sometimes my msu grows bugs, sometimes not. Generally blood is present ( on dipstick test).

I was delighted to find this website....as I feel GP is finding my problem a bit of a pain by now.

Am a sunny personality by nature, so I think she sees my smile as evidence that I'm ok....

White rose x
Moderatorsusan

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Reply with quote  #2 
I'm sorry to read you are struggling with these recurrent infections. It sounds to me as if it is an infection that has simply never cleared and may not have been properly treated by the correct antibiotics. Sadly low dose prophelactic abs set up ab resistance or allow other bacteria to dominate. Trimeothprim is now proven to be resistant to around 80% of infections.

I would look at using some naturals for the time being such as D Mannose which is great for ecoli and other gram negative bacteria. Take on teaspoon of powder every 2 hours for the first 3 days and then drop down to 8 teaspoons a day and once settled a maintenance dose of 3-4 times a day. Oil of oregano is great against enterococcus infections which love the top of your bladder and the kidneys giving the back pain that people experience with UTIS. Two tablets twice a day. Also grapefruit seed extract can help with enterococcus.

I think we also have to look at hormones as lack of oestrogen during the peri, menopausal and post menopausal years causing recurrent UTIS is horribly common. This can cause vaginal dryness and a change in the PH of the vagina allowing bacteria to flourish. Oestrogen is needed for the vagina to maintain its natural flora and lubrication. Interestingly, the bladder also needs oestrogen and some people see a reduction in pain after adding this hormone.

Oestrogen also has natural antibacterial properties particularly against e coli infections and in studies increasing the levels of oestrogen in the vagina has a beneficial effect on the bladder as the wall between the bladder and vagina is very thin and by plumping up this wall, the bladder becomes strong and is able to fight off infection better. Obviously with any HRT treatment, you must take into account any family history of cancer but I'm aware of gynaecologists who will prescribe local HRT such as Vagifem as it is so localised to patients with a history of breast cancer for example on a short term basis.

In terms of questions to ask your Urologist, I would go armed with the following:

1. Ask him specifically what he feels is the key problem with you. Is it a low grade lingering infection not cleared by low dose antibiotics, painful bladder syndrome, IC or recurrent infections caused by menopause? I assume you have had scans in the past to rule out any physical issues such as strictures, blockages etc in your kidneys, bladder or urethra?

2. Ask him what treatment paths he wishes to follow. Once he has outlined these depending on his diagnosis to 1 above, ask for his success rates. For example if he suggests instillations, how successful have these been both short term and long term. Ask for success numbers. Any good urologist should have these. Explain that you need to know this before agreeing to any treatment plan so you can make an informed decision. Does he have any leaflets about his treatments you can take away with you?

3. If he suggests long term low dose antibiotics again, please ask him about setting up possible antibiotic resistance particularly if the cultures are not specifically finding a bug each time. Would he be prepared to prescribe a high dosage antibiotic for a period of time such as Cephelexin? The COB office can send you some papers written by a Professor of Medicine here in the UK about urine microscopy and the treatment of low grade undiagnosed infections. His Treatment methods are high dose antibiotics for a period of time but he is seeing excellent results and these are often patients who have had every treatment under the sun without success. As you have suffered recurrent infections over the years, this approach may be an option and many urologists have heard of this Professor.

4. Would he be willing to work with you using localised HRT to reduce your symptoms. Has he had success with patients going down this route, particularly those going through the menopause or who are post menopausal.

As I mentioned above, COB can send you lots of information in advance of your appointment that you can take with you and you could encourage him to read this (once you have had a good read yourself). Hopefully the Natural suggestions I have made will help but as you are continuing to get these infections all the time then you need more help with these and at least your GP has made the referral.
Whiterose

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Reply with quote  #3 
Thank you so much for both your swift response, and excellent suggestions....much appreciated...I'll let you know ow I get on [smile]
Whiterose

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Reply with quote  #4 
I had my appointment. Nice doctor, but Didn't really explore much. I've just had stop my 9th lot of antibiotics, as developed a rash. Am to have a flexible cystoscope and CT, and am on oestrodial pessaries. Infections almost constant now. Had no alcohol for 3 months and cut out caffeine. I apparently grow the same type of e-Coli bacteria each time.

Hopefully can get on top of this, as feel a bit demoralised...

whiterose
ModeratorKate

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Reply with quote  #5 
Hi White rose

Do try D Mannose as well as Wild oregano, as Susan suggested above, that should really get rid of the E. coli.you could continue with the d mannose as a maintenance dose.

Here is what I try at onset of feeling a flare maybe imminent[rolleyes].even following all the usual regimes doh!!

1 Teaspoon of bicarb in glass of warm water,
followed by D mannose and Oregano.  This really does help if I start as soon as I feel that bloated nagging feeling.

Also be extra extra fastidious , about rinsing after every urine pass,( front to back) even if out and about this will wash off any nasties.

Just gotta keep battling, but do keep posting , we will always listen.

Kate

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dawncperry

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Reply with quote  #6 
I have had success so far with Oil of oregano at night and Grape Fruit Seed Extract 3 x daily with food. Re GFSE, here is the number for Viridian 01327 878 050. The told me how to take it and so on - extremely helpful.


My UTIs are after sex and last 3 times I have not had a flare up so Im thinking of topping up with the DMannose each night aswell. 

My urine exams sometimes come back no bacteria found. 

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Whiterose

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Reply with quote  #7 
I thought I'd give an update. Now on 17th lot of antibiotics in 11 months. Saw urologist today who had no new suggestions. Always Coliform bacteria. Seem low grade as blood and leucocytes normal on lab tests ( although on my urinalysis sticks, I get 2 pluses for each, usually). I've tried dextrose mannose, strong cranberry capsules, probiotics...all the other advice offered here and by a nutritionist. I don't feel constantly ill, but a few degrees under par all the time, with frequency and stinging the main issue.

The worst thing is how I'm made to feel by the health care professionals ( and I'm one). I had a practice nurse phone me up and said it must be my bad hygiene. She had never met me, and I'm scrupulous in my cleanliness...(I did cry, at that point, as getting to end of my tether).

Today urologist said I may need to build my immune system up.

I've been on hormone pessaries for 6 months, by the way, as now aged 64, and well past menopause. Given up caffeine and alcohol.

Moan over...it's just been good to vent....thanks for listening.

Whiterose
Moderatorsusan

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Reply with quote  #8 
Its so frustrating isn't it.  Can I ask if you are just given short course abs each time?  its these that are causing the big problems as they just don't cover you sufficiently.  If its stop start each time, thats not going to help.  Im afraid its continuous coverage at the highest possible dose.  

Stinging and frequency is horrible and as you say they keep finding e coli in your sample so you are doing the right thing by using the mannose.  You are lucky if thats the right way of putting this in that your samples are positive but somehow you need to get on top of these infections.  In a way strengthening your immune system will certainly help particularly with the cold dark months coming in.  We all know what its like running at 60% all the time but until the new in bladder treatments come along that are being developed by a few specialists unfortunately its the antibiotics to try to knock back these infections plus the naturals already discussed.

I'd keep up the vaginal pessaries just to keep things reasonably healthy in your pelvic floor.  The COB office can give you details of specialists across the UK treating people with these recurrent infections so thats always an option.  Diet is very crucial and certainly cutting out the sugar and carbohydrates can make a huge difference as bacteria feed off this. Not easy I know in our carb laden, sugar rich diet but swapping to stevia, xylitol and going gluten free for a while may help.
ModeratorKate

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Reply with quote  #9 
Hello Whiterose
Am so sorry to read of your ongoing frustration.

A few more thoughts to add,
have you changed your Water intake source?
i,e only drinking bottled water to see if the water is the coliform culprit.

Also did you take the Powdered version of D Mannose in several doses through out the day,also not urinating for at least an hour and last thing at night, to allow it to remain in the bladder.

Someone many years ago, suggested to me to stop any Probiotics/acidophilus at the start of an AB course, restarting on the last day of course, (The thinking was that the AB was supposed to be killing all bacteria, so why make its life more difficult by continuing to introduce more bacteria)

Just my personal thoughts , and to let you know we are listening.

Do keep posting.Kind regards
Kate






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Whiterose

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Reply with quote  #10 
Hello Susan and Kate,

Thank you so much for your replies...having people who understand the situation is encouraging and heart warming.

I have had mainly 7 day courses of antibiotics, and one course of 2 weeks. The symptoms came back within 48- 72 hours each time. The dextrose mannose I've been taking was pretty expensive but in capsule form so will try the powder instead. I do try and hold on to at least an hour post taking it before passing urine.

The list of specialists dealing with recurrent infections would be very helpful, Susan, for the future. I haven't thought of bottled water, either, Kate. I've always assumed our tap water is fine.

Thank you for listening...it does help...

Best wishes

Whiterose (Sue)
Whiterose

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Reply with quote  #11 
3 months on and still no improvement, I'm afraid. I seem to have a permanent UTI...about once every three weeksI give into it, and go through ritual of sending off msu. GP then prescribes 5 days of 50mgs nitrofenotoin four times a day. Symptoms are relieved ...but come back within 24 - 48 hours. Frequency, burning, nocturnal, supra pubic pain. I seem to grow the same 'bug' each time. D. Mannose powder hasn't helped. Feel fed up.

My question is should I just live with the infections....grin and bear it. I feel I'm getting on GP s nerves [frown]

Best wishes

Whiterose
cat33

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Reply with quote  #12 
Sorry to hear things haven't improved Whiterose. I've been there with the stinging and frequency and it is so disheartening.
Have you thought about contacting one of the two specialists? It may be a biofilm infection. I was wary of the cost but it was the best thing I could have done as the bugs were identified and I've felt so much better since (not completely gone, but completely manageable now)
Whiterose

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Reply with quote  #13 
Thanks Cat33, for your encouraging words. I was just beginning to think I might have to seek a referral elsewhere[smile]. I do worry about the cost too, but maybe it would be a good idea. If one of the moderators read this, they can guide me as to how to go about finding a specialist.....

Warmest wishes,

whiterose
ModeratorKate

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Reply with quote  #14 
Hello Whiterose

Please contact the Bladder Health Uk Office today( see top of page), they have all the information to assist you further,
and by becoming a Member of BHUK, not only will you receive a joining pack and quarterly magazine, you will access to more support and contacts.

We are only a small Charity and the phone maybe busy, BUT do leave your contact details and someone WILL get back to you.
..
Kind regards
Kate


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barbie

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Reply with quote  #15 
Dear Whiterose,

So sorry to hear you're getting on your GP's nerves!  We've all been there, in addition to suffering UTIs you now feel like a b****** nuisance as well!  Do have a good read of the Bladder Health literature and information about other specialists you can see - you will then find you're on the right path.  Good luck, we're thinking of you.
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