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marinada

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Posts: 2
Reply with quote  #1 
hello

I am hear on behalf of my 83 year old mum, who has been ill for a year now.

she has had constant urine infections. feeling very tired all the time, has lots of pain in her vagina.

she has had two cytoscopies, a bladder biopsy which resulted in a 1 week hospital stay due to blood loss.
inflamed bladder

a CT scan which the dr diagnosed chronic cystitis

she also has a history of back pain, but doesn't get this all of the time. atm it is really bad and she describes it as a gripping pain and the feeling of being punched. it is sort of upper right under her bra, if you know what I mean,

I wonder if she has a kidney infection?

she has just finished a course of antibiotics with tramadol and normally has a low dose antibiotic at night (alternating trimethoprim or nitrofurantoin as she is allergic to penicillin)

I dont know what to do to help her. 

any ideas?

thank you

Marinada




JillB

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Posts: 214
Reply with quote  #2 

Hello Marinada

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So sorry that your mum is so debilitated by these infections.  I know of two physicians in the UK who specialise in chronic bladder infections.  In my opinion their knowledge far surpasses the many  doctors and urologists that I have come across.  One operates a clinic in North Staffs. This is a private clinic but the fees are reasonable.  This doctor will likely broth culture - a test that grows hard to find bacteria -  to determine exactly what the offending bugs are.  The other is a professor in a north London hospital (NHS).    Alternatively you could look into Chinese therapy.  The herbs that traditional Chinese medicine use can be very effective in fighting off bacteria.  You do need to find a highly qualified practitioner though.  This is the route I have chosen as for me the antibiotics were no longer working.  E-mail me privately if you would like the names of these professionals as we can’t name them here on the forums.

Jill

DawnCOB

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Posts: 4,496
Reply with quote  #3 
Hi Marinada ,

It is quite common for older ladies to have cystitis for various reasons, one reason can be as their bladder often becomes sleepy they are unable to empty the bladder properly, therefore causing urinary infections which can be managed by daily antibiotics .

Does your mother drink cranberry juice , this is known to help certain bacteria growth and many ladies I know with bacterial cystitis find this useful.

Looking at your mothers diet can also be helpful, having less sugar might be helpful.

best wishes

Dawn
marinada

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Posts: 2
Reply with quote  #4 
Well here we are, now two years on. Mum is 84 and her pain is getting worse and worse. She has just been to the pain management clinic and they say there is nothing they can do for her.

I cant believe that

I have since been on the internet yet again looking for any alternative treatments.

she became resistant to all the antibiotics and is currently on Pregabalin and has Morphine and Tramadol because she also has sever back pain. she is waiting for steroid injections into her back but it is the bladder pain and cystitis which is making her so miserable and depressed.
I hate to see her suffer

I have seen mention of Elmiron and wonder if anyone here takes it and it helps at all? I don't think my doctor has heard of it, as I am sure he would have mentioned it, as we have tried her on everything else!

I have also found out that Cranberry juice actually makes things worse
Moderatorsusan

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Reply with quote  #5 
Marion

I am so sorry that your mother is still in constant pain and has been advised that there is nothing anyone can help her with. This is not acceptable.

As previously mentioned there are two specialists in the UK who are treating ladies with chronic bladder infections. One is London based, the other in Staffordshire. I feel that it would be advantageous for your mother to see one of these as it sounds like she has a chronic low grade infection that has not been properly cultured and treated with the correct high dosage antibiotics. I appreciate that your mother has resistence issues (as do I) and in the elderly that antibiotics can cause issues and doctors are wary of prescribing high doses. If it helps the specialist in London specialised in geriatric medicine before setting up his clinic and can be seen via a NHS referral.

I have personal experience of how distressing these infections can be. My mother was hospitalised last year with a chronic UTI which took weeks to clear and 3 different courses of IV antibiotics. She contracted another infection in her nursing home earlier this year and was very ill with the home calling us each evening and we nearly had to admit her to hospital. However by this stage I was under treatment myself with the London specialist and sent her GP a paper he had written about his treatment methods. The GP agreed to put her on high dosage Cephelexin for 10 days at 2mg a day (my mother is 86). When I visited her last weekend the change was quite remarkable and the nursing team said she was a different woman. She now takes 1mg daily as a prophylactic dose and her GP is now going to get in touch with the specialist to discuss other cases he has of all ages.

With regards to Elmiron this coats the bladder but is not available via the GP only via specialist referral and there can be a long wait on the NHS for it. Some women have seen success with it, others not.

I urge you to call the COB in the morning and get details of the two specialists. They will also be able to discuss Elmiron further with you. You are also absolutely right about cranberry juice. It's extremely acidic and full of sugar. Most doctors and specialists now acknowledge that it's a foe not a friend.

Icy

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Posts: 428
Reply with quote  #6 
Hi Marinada,

If you mother has had many antibiotics over many years and you say she appears to be resistant to all antibiotics now, then she will have no doubt got systemic candida. Antibiotics really damage the gut flora but all other flora in the body. Particularly as you get older the body does not produce as many good gut and body flora so she will probably be really depleted. The good flora keep down bugs, they produce vital enzymes, build vitamins - in fact there isn't much that the good flora don't do because they are the heart of the immune system and if the immune system is functioning well you won't get cystitis and chronic problems.

Has the doctor ever tried her on a prolonged course of antifungals which may help any fungal overgrowth in the body. I know it is another pharmaceutical which is perhaps best avoided but it may be diagnostic in a way as if there is any improvement whilst on it, it will indicate that candidiasis or fungal overgrowth is contributing.  She could then move onto a more natural antifungal. Also in the meantime she could be dosing up with strong probiotics. 

They need to do more than just say "nothing can be done" - there is lots to try.

Also has she ever done a gluten free diet - really strictly. Gluten is responsible for so much chronic illness and people can go their whole lives not even knowing because everyone tends to think just in terms of the gut being sick. But gluten can cause hundreds of different symptoms in people. Many people become gluten intolerant as they get older too.  It is really worth cutting out all grains for a while - just to see.

This is not something GPs or even consultants would think of. If you mentioned it to them they would call you barmy and that is really outrageous - because gluten is one of the major things that gives chronic heart, skin, kidney, liver, central nervous system, bladder - so many conditions.  If you have ever read the book Dangerous Grains you will see there are hundreds of chronic illnesses listed which are associated with the gut and gluten.

Really looking at diet may help her, but again doctors just don't learn about nutrition in the depth they should do.  They will far easily treat an illness with a drug which is not always the best way. 

Some people on this forum have gone to specialists to have more extensive urine testing done. The normal NHS tests are totally useless and don't pick up things. If something was isolated for your mother it may better be able to be targeted.  It is so distressing.

This condition is awful and affects women, men and children. Your mother has done well for her age, as so many suffer this from teenage years. Something means that something somewhere has changed for her if she has done so well and gained such good years and the doctors need to be looking for that "something" that has changed.

Hope she can feel better soon.
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