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ddj42

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Reply with quote  #1 
Hello, 

My first cystitis symptoms (urgency, full bladder sensation) appeared just over four weeks ago. For three weeks, my GP prescribed different antibiotics, five different ones in total. They all worked well for a very short period (a couple of days), with the symptoms almost disappearing but then soon coming back. On a couple of occasions, the symptoms were unbearable, the urgency was like torture (I have had cystitis before but it never to such an agonising degree). 

After the fifth treatment, my GP said he would not prescribe anything else, being convinced that the last course of antibiotics I'd taken had done the trick (his choice of treatment was based on a rather dodgy urine test taken when I was still full of antibiotics). He said that anything I felt would be residual inflammation.

I have now not taken anything except D-Mannose for 8 days (3 tablets 4 times/day). My symptoms come and go: sometimes very bearable, sometimes less so. So I wonder, can residual inflammation last this long? Why do I have these see-saw symptoms rather than a gradual improvement?
I am having a new urine test done by a private lab but it's another week or so before I get the results. I'd be grateful if anyone with residual inflammation could let me know how long it took to clear.

Thank you.    
ModeratorKate

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Reply with quote  #2 
Hello ddj42
Welcome to our Forum, you will find much to assist you in trying to discover ways to help yourself, with this dreadful did-ease. As you will discover we are all different in our symptoms and reaction  to treatment .But what we all have is understanding an sympathy along with an open ear, we always listen.

I will print a previous comment that maybe of some extra help for you, Do you know what bacteria if any were found? D Mannose will only help with E, Coli Bacteria( Incidentally Powder is better than Tablet's).and maybe Oregano Tablets may assist.

I notice you have sent off another Urine test, did you tell them you were taking D Mannose as this will distort their findings, always better to have a completely free sample.
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Low dose antibiotics will not clear an infection.  They may rid you of the main symptoms but not entirely shift the infection itself, come off and it flares up again. 
Sadly GPs these days take a hit and hope approach and its usually Trimethoprim or Nitrofurantoin for 3 -5 days.  Ask your GP to print out all the results from the laboratory to show exactly what bugs you have and whether the lab has confirmed the antibiotic susceptibilities and resistances.
If you are a Member BHUK ring(Number top of this page) the BHUK office  and ask for two packs.  One is the Bacterial Cystitis pack, the other the Embedded or Biofilm infection pack.  They will make for very interesting reading and if the urologist is unable to offer any answers then there are two specialists in these packs that can hopefully help you further.  An excellent book to read is that written by Angela Kilmartin called Understanding Cystitis, a guide.  Lots of lifestyle tips in there, her famous bottle washing technique and management for repeated attacks of cystitis. 

Hope this may help

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ddj42

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Reply with quote  #3 
Thank you. Can you please let me know in which way D-Mannose affects urine tests?

Should I wean myself and if so, for how long before I do another test?  By the way, I am having the tests done privately as the NHS tests have been unreliable (coming back as normal when I was having very bad symptoms).


Also, will a test show whether what I am experiencing is residual inflammation or an infection that has not gone away? What about these nitrite/nitrate markers? 


ModeratorKate

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Reply with quote  #4 
Hello ddj42
Re your question here and on the other re D Mannose, click on the advert for D Mannose on the left of this page, they have all the information and can explain much better than I ever could.

Personally and basically if your are taking D. Mannose to kill e. coli bacteria, then that bacteria will not be showing in the urine,
Here is an extract from their site

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ddj42

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Reply with quote  #5 
Kate, you are much more of an expert on this than me but I doubt that D-Mannose "kills" E.Coli (it's a sugar, not an antibiotic). What it does, according to the website, is detach the E.Coli from the walls of the bladder. I quote: "  In the presence of D-Mannose, E. coli preferentially attach to D-Mannose molecules forming a complex which is expelled with the next voiding.". So, I would expect to find more E.Coli in the urine, not fewer. 

Or could it be that when E.Coli attach themselves to the D-Mannose molecules and are expelled in the urine, their structure changes and they are not picked up as a true E.Coli in the test? 

I wish the D-Mannose website said something about its effect on tests. And by the way, a) my test has now come back negative for bacteria and b) the lab has confirmed D-Mannose falsifies the results but has not said how. 

I still have the symptoms. 
coboffice

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Reply with quote  #6 
Hello ddj42

D-Mannose (and any other supplements  eg.Oil of Wild Oregano, Coloidal Silver etc) should be stopped at least 48 prior to sending off a sample for culture. With regard to the D-Mannose, the E-Coli attaches itself to the D-Mannose is will therefore not be picked up in a culture. If you are still experiencing symptoms, I would suggest that you stop the naturals for at least 48 hours and then try for another re-culture.

Residual inflammation can go on for quite some time and whether your issue is infection or inflammation, I would urge you to stick to a bland, low acid diet (you will find some ideas in our Diet Booklet and Recipe Booklet) to be as kind to your bladder as possible while it trys to rid itself of infection or calm down inflammation.

The nitrites you refer to are usually detectable in the presence of gram-negative bacteria like E-Coli. If you are picking these up in your urine that is a definite sign that there are bacteria present.

If you have any further questions, please do feel free to drop me an e-mail (susannah@bladderhealthuk.org).

Susannah Fraser

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