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juliem93

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Reply with quote  #1 

I'm sitting here at the moment not sure whether to laugh or cry. Well, maybe I'm lying - I just want to cry!

I'll try to be brief with the history - recurrent infections started about 16 years ago and in 2004 I was hospitalised after becoming very ill when two lots of antibiotics failed. Infections continued after that but more and more results were coming back negative even though I was in a lot of discomfort.  Life started to become unbearable.  Bladder investigation under general anaesthetic showed nothing. D-mannose became my 'can't leave home without it' med - it soothed but it didn't always work. Finally offered Cystsitat.  For about 4 years it has helped, flares were less frequent and I even had a few days at a time when I forgot my bladder!  Last 6 months it hasn't seemed to work.  Last 3 months have been dreadful.  Urine looks and smells awful and lights up dipstick, even showing some blood.  GP horrified at my sample before Christmas and gave more antibiotics - but hospital result came back negative.  Antibios improved things for about 2 weeks - then back to the way things were.  Nurse is changing me from Cystistat to another treatment.

Finally paid for private urine test.  Annoyingly last week, urine much better for several days, quite clear and odourless although nitrates still high.  Thought test would be negative.  Results back - positive for E. Coli. 

I've a horrible feeling this has been there all along. Is this what might be expected with a biofilm infection?  It took me a while to believe the medics when they kept saying you could have all the symptoms of infection and yet not have one.  Have I really been putting up with this for years when I didn't need to?

Would love to have some of your thoughts and input.  Thanks.

Moderatorsusan

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Reply with quote  #2 
Oh gosh what an awful time you must have had over these years in dealing with this. I’ve written extensively on these forums about recurrent infections, embedded and biofilm infections so you may want to do a search.

What to do next - well I would certainly contact BHUK’s offices tomorrow and ask for their biofilm information pack, it will give you more information and some papers written by a couple of specialists treating patients for these infections as well as their clinic contact details.

With regards to the D Mannose keep taking it as E. coli has been found to help against gram negative bacteria of which E. coli is one - a teaspoon every 2 hours whilst you are feeling acutely unwell and after a few days you can drop down to 6-8 teaspoons a day. Sweet Cures of York have an excellent website that focuses on recurrent UTIS and has lots of background research information and suggestions. Their founder sadly herself was plagued by recurrent UTIS for many years.

Also focus on your immune system too. You need this to be up and running to help the body fight off the infection. A low immune system caused by auto-immune issues, Lyme disease, low thyroid, IBS or gut dysbiosis, a viral infection, MS or CFS/ME can allow infections to keep recurring or reappear after a period of time. If female, hormones play a large part too especially around perimenopause and menopausal years due to the lack of oestrogen which helps to maintain bladder wall support and keeps the urethral opening closed making you less prone to infection as well as maintaining a healthy immune system. Oestrogen itself has antibacterial properties and once the oestrogen starts to disappear, infections can either reoccur or some women experience them for the first time in their lives. Bacteria are opportunistic and if an embedded biofilm infection senses a weakened host (i.e you), it can re-emerge taking advantage of the fact that the host cannot call on the immune system to fight off the active bacteria in the bladder.

The team at the BHUK office are very sympathetic and can provide you with an outlet for all your concerns as well as providing information on the next steps and there are always these forums where you will find support.
juliem93

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Reply with quote  #3 
Thank you so much for your very swift response.  I will indeed get the biofilm info pack asap.  At least I feel I now have some idea what I am dealing with.  I argued for years that I thought I had an infection and yet was told my symptoms were very common in those without infection.

I am very familiar with Sweet Cures and use D-mannose a lot.  I could never understand why it was the greatest help during a flare-up when apparently I did not have an infection!  I will up the dose again for a while to see if I can improve my current situation.  Unfortunately, it is not cheap.  I do agree that Sweet Cures is a great company - informative website and very fast delivery.

There is no doubt in my mind that this problem started as I approached menopause.  I am now 62 (definitely in my body only - my head still refuses to accept it!). 

Anyway, thank you again.  Now that I know my enemy, onwards and upwards - let battle commence!
Jaycifer

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Reply with quote  #4 
Have you asked for HIPREX from your GP?
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juliem93

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Reply with quote  #5 
No, but thanks for mentioning it - it is something I've had in the back of my mind.  Had private test result back last week and it showed an infection (the NHS test didn't!).  Trying to sort this out at the moment.  Saw new GP at our practice - she was at least very sympathetic and interested.  Will just wait to see if this resolves and will discuss with her further.  Am seriously considering getting an appointment with the Professor.  Thanks again.
juliem93

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Reply with quote  #6 

Just thought I'd up-date on progress in case it is of interest to others.

So, after private UTI test contradicted NHS test (which was normal) and showed an E. Coli infection, GP agreed to give me a 7-day course of Trimethoprim.  We also agreed that 7 days after completing the test I would submit a sample to send for NHS testing and another to private testing so we could compare results from the same urine sample.  (Yes, I did manage to fill 2 separate sample bottles in one go quite easily!).

Incidentally, I have avoided Trimethoprim since about 14 years ago it failed to work and I ended up in hospital on a drip for a week.  However, the private test suggested this should work on my current infection.  I can only say that although my urine looked much clearer afterwards, it did not improve any of my symptoms at all.  Usually I get relief for a week or two after a course of antibiotics.

Anyway, results are in.  NHS test again said that all is fine, no infection.  Private test results show that my white blood cell count is much lower than last time but is still suggestive of infection, and indeed I still have an E. coli infection.

So, off to the Doctor again tomorrow to discuss the results. 

Incidentally, nurse at hospital where I have my bladder instillations (which are no longer providing any relief) refused to accept a test result from a private testing company!  She is, however, referring me back to the consultant.

At the moment, my feeling is that I will see what my GP has to say but early next week I will contact the Profs secretary to arrange an appointment.

ModeratorKate

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Reply with quote  #7 
Hello
Thanks for your updates, phew! what a run a round, bless you.

am sure Susan or some one will answer soon.
In meantime as you know its an E coli, why not take the D Mannose, that really should flush it out, especially if you can take after last evening void, to allow it to swill around the bladder as long as possible.

Here is an earlier reply elsewhere.

D Mannose
For those suffering with Gram Negative bugs (E coli, Proteus, Klebsiella and Pseudamonas), D Mannose has proved to be helpful in controlling a flare or preventing an attack from worsening or for post coital UTIs. It works by clinging to the fingers of gram negative bugs, preventing them from attaching to the walls of the bladder and urethra. When you urinate, it helps to flush out the bugs from your system. Although it is a sugar,very little gets into the body and most is excreted through the kidneys and urine.

For more information, see the attached link.
http://articles.mercola.com/sites/articles/archive/2014/04/28/d-mannose-uti-prevention.aspx

and here. http://www.remedy-bladder-infection.com/oregano.html

Hope it may help





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juliem93

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Reply with quote  #8 
Kate, thanks for your response.  I do virtually live on D-mannose and I don't know how I would survive without it.  However, I stopped it for a while before re-testing to ensure that nothing could interfere with the results of the post-antibiotic test.  It is an absolute must for really bad flare-ups and I take it at night the rest of the time.  It has always made me wonder why it helps so much if - according to the NHS - I don't actually have an infection.  Unfortunately, things have deteriorated over the past 6 months and while the D-mannose is helping during flare-ups, it does not seem to be helping on the normal dose on a daily basis.

I have just had a lovely call-back from the private testing company as I had a couple of queries I wanted to sort out before I see my GP tomorrow.  The Dr. called within about an hour of me emailing.  Very impressed with the quick and very helpful response

I'll see what my GP says tomorrow.  She is new at the practice and was very understanding and interested when I saw her a few weeks ago. 
juliem93

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Reply with quote  #9 
OK...update.  On last visit to GP she gave me a 14-day course of a different antbiotic listed by the testing company.  Had a glorious 2 weeks or so feeling much better, lovely clear urine, no nitrites etc.  Waited 7 days after finishing meds and sent off for another private test.  While waiting for the results the usual irritation started to return.  Results came back on Monday.  They said that my white blood cells were normal suggesting I didn't have an infection.  However, I had grown E.coli as well as (for the first time ever to my knowledge) Enterococcus faecalis.  Due to my white blood cell count, it was suggested that this was due to a contaminated sample.

Well, firstly, I am very careful doing samples, following the instructions to the letter, so I think this unlikely.  Plus the irritation has increased and yesterday I had a really bad flare up which I am still trying to get under control.  Dipstick is yet again showing bright pink for nitrites.  I suggest that the 2 week course of meds finally brought my white blood cells down and that will probably rise again as the infection springs back into action.

Yesterday I rang for an appointment with the Prof and I have got one at the beginning of August (so hoping a cancellation comes through before that).  In the meantime, I need to try to keep things under control to avoid any more antibiotics.  I clearly need a very long course and I am not sure I trust GP or local consultant to prescribe, even if they were willing.  So, back on D-mannose, oregano oil etc to try to survive the next few months!  Trying to stay positive as I do now feel that there may be some light at the end of a very long tunnel.
Moderatorsusan

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Reply with quote  #10 
Great news you have an appointment with Prof for August. Keep trying as he gets a lot of cancellations so ask his secretary to stick you on the cancellation list. Be prepared to travel at short notice.

How on earth a sample that shows two bacteria can be considered contaminated is just beyond me. There is so much research now showing that infections are polymicrobial but we persist with the belief (set out in the 1800s) that an infection is caused by one pure growth bacterium.

Keep the naturals going and hopefully an appt with Prof will free up soon.
juliem93

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Reply with quote  #11 
Thanks - yes, we did discuss possibility of cancellations.  She was very nice and very helpful.  Can't wait!
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