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cat33

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Reply with quote  #1 
I am in treatment with Dr A for my bladder symptoms. For the past few months I think I have reached the inflammation stage and I have almost no pain and a very low level of frequency.i stopped taking antibiotics about three months ago with no increase in symptoms

I understand that inflammation can take time to go down and with a mixture of Pregablin, prelief and dietary changes I can largely lead a normal existence.

My question is as there is still some inflammation, does this mean that there is some infection lurking beneath the surface where the biofilm has formed? I'm assuming that there is, as sex always stirs things up for a day or two, but can anyone offer me a clearer explanation?
Moderatorsusan

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Reply with quote  #2 
Yes your supposition is correct. The very nature of a biofilm infection means that it is embedded into the bladder wall and bacteria such as E. coli are able to penetrate deeply into the bladder wall cells and leave what are known as persister cells. The bladder wall usually sheds surface skin cells every few months which is often why some people experience a flare as planktonic or active bacteria are shed into the bladder causing things to suddenly spark off. In theory the shedding of these cells should mean the biofilm being brought closer to the surface and after a period of time hopefully being removed altogether although those persister cells can lie dormant deep inside the bladder wall. New in bladder treatments are being developed to target these biofilms and in particular the cells deep inside the bladder wall and hopefully should be available in the next few years which will mean no more high dose antibiotics and the associated side effects.

Each time you either have sex, exercise or carry out something that shakes the bladder it can cause the biofilm to shake out bacteria into the bladder and a flare or discomfort can be experienced. I know that Dr A has a number of patients who simply need to take abs after sex for a few days but otherwise can lead normal lives and it sounds like you are there. That's great news. Inflammation will lag behind the actual infection as the bladder has more nerve endings than any other organ in the body and is highly sensitive. However by watching your diet and doing everything you are doing it sounds like this is manageable for you which is a great start to 2017.
Hannah123

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Reply with quote  #3 
Hi Susan/All,

Could you elaborate on the new treatments in development for biofilm uti's? Or point me in the right direction for these?

Regards, Hannah.
Moderatorsusan

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Reply with quote  #4 
I can't offer to much information as they are still in development but essentially they will be antibiotics instilled into the bladder with other ingredients designed to break down the biofilm and embedded infection in the bladder wall. As I say all still in development so not much more information as the mo.
Kimberly

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Posts: 61
Reply with quote  #5 
Hi - I've been taking nitrofurantoin and azithromycin daily for a few years. When I try to drop the dosage symptoms return after only a couple of days. Obviously I'm concerned about this heavy use and why I can't reduce dosage at all after such a long time.

It's encouraging to hear others are doing well and it makes me wonder if I'll get there and when.

Does anybody have any thoughts? Thx
Kimberly

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Reply with quote  #6 
And I'm wondering if I took something for nerve pain like pregablin would it help and mask the bacteria related symptoms?
Moderatorsusan

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Reply with quote  #7 
Pre Gab may help but be aware that it is soon to become a controlled medication (similar to Morphine based pain meds) due to increasing concern by Public Health England over its usage.

Have you ever tried something like Amitryptaline to help with nerve pain? You can start on a low dosage and see if that helps and always titrate up or down under the guidance of your GP. Its certainly proven to help with bladder nerve pain.

As for the ab issue, don't worry you are not alone. There are a number I'm aware of who are on long term abs and each time they try to stop or reduce the dosage the symptoms come back. Perhaps take a whole body approach and make sure you look after your gut as well to ensure that with the abs you take a high dose probiotic each day to ensure the good bacteria are being put in there. You may find that by eating healthily and looking after the gut you may be able to reduce the abs down. Sadly long term infections can take their time to resolve. Its baby steps I'm afraid with this and I'm sure your specialist (Prof?)will be able to provide reassurance on this.
Kimberly

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Posts: 61
Reply with quote  #8 
Thanks Susan. I have tried amitryptiline in the past along with other symptom medications. They provided some relief, but it was before I took antibiotics. Maybe it could be more effective now.

I do take probiotics. Do you mean that by taking them they can help with the infection? Sorry I wasn't sure what you meant.

Unfortunately the Prof'S team now have to close each call with the disclaimer that this not a standard approach and the patient understands this and any implications. This always makes me more concerned about taking the abs!
Moderatorsusan

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Reply with quote  #9 
Do give the ami a try again. It may take a few weeks to kick in but lots of people respond very positively to it. There are other options such as Nortryptaline or Duloxetine as well.

Yes probiotics essentially hello to put the good bacteria back into your gut that the high dose abs strip out. Abs are not selective about what they remove in the stomach so in general its a wipe out of your whole system. By adding these in, you will repopulate the gut and obviously eating healthily will help too. Sugar and carbs all feed bacteria as well as the trigger foods for bladders in general so its worth exploring a different approach to eating. Always take abs at least 2 hours away from your probiotics and its best to take the Probiotics around 30 minutes before eating in the morning to really kick start the system. Remember its billions you need to add in so any yoghurt based probiotic drinks won't work and are packed full of sugar. There is a thread in one of the sections on this forum about recommended PBS for people with bladder issues and these are tried and tested by patients and are bladder friendly.

I think you will find that Prof is not the only specialist in the UK having to prescribe outside of guidelines. Put simply there are no NICE guidelines for Chronic Infections and they admit. Its one thing that COB are actively campaigning for given the situation with so many people struggling with chronic embedded infections. Many specialists in hospitals now prescribe "out of the box" in terms of treating patients, Prof puts this statement into his paperwork and obviously will explain the reasoning to you behind his antibiotic regime. Its obviously down to the patient as to whether they decide to follow this course of treatment. I assume you had been through the whole gamut of IC testing and treatments before you saw Prof.
Kimberly

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Posts: 61
Reply with quote  #10 
Thanks for the advice. I knew that PBs help with ab side effects and general health, but didn't realise they could play a role in helping with the infection. Good to know.

Re the IC testing, I've had many cystoscopys if that's what you mean, and a biopsy? In terms of treatment I've tried urethral dilation (I know now this isn't good), anaesthetic injection, symptom medications, Gepan instill. Nobody has told me categorically that I have IC, but I understand that can sometimes be the case even if you do have it. Is that right? Somebody I was talking to suggested trying Elmiron which takes a few months to have an effect.

Also, I'm trying not very successfully (!) to conceive so cocktails of drugs aren't ideal. What a mess!
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