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heathwhit

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Reply with quote  #1 
Has anyone read the article in todays Daily Mail regarding uti testing not picking up infections.It's not made me feel any better because i am certain i have an infection after my cystoscopy in fact i think i had one even before it.Another sample gone in today i am feeling worse by the day .I honestly think this is slowly killing me.Heather.
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tigger11

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Reply with quote  #2 
I read the article in the Daily Mail and it closely reflects my own experiences.  Just before I retired I had surgery in 2003 for a vaginal prolapse and immediately started getting repeat urine infections which have gone on for years ever since and basically ruined my retirement.   I was constantly on antibiotics which seemed to clear it up for a month or two, then I got another one.  Eventually I became quite ill with severe stomach problems because the antibiotics had killed off all my good gut flora. I found a good medical herbalist who diagnosed a leaky gut and internal candida which took more than two years to cure on an anti-candida diet and lots of probiotics and supplements. However that did not cure my urine infections but for two years under her I did not take antibiotics and controlled my symptoms with d-mannose and oil of oregano.  Having got my gut under control the infections came back with a vengeance and a year ago antibiotics prescribed by my surgery stopped working.  The next step was hospital for intravenous treatment and the suggestion of a cystoscopy.  I was at my wits end and felt so very ill.  However through Bladder Health I found the lovely Professor M-L.  At my first appointment a year ago I expected him to put me in hospital.  My surgery test result had shown no real antibiotic to treat my infection.  However he said to ignore that result and put me on Cefalexin (which was one of the group of antibiotics the test result said would not work).  It took a leap of faith to believe him but with a few days I had such relief life became worth living again.  He diagosed a serious biofilm infection and said it could take up to two years to eradicate.  I am also on Hiprex which he suggests taking with Vitamin C capsules to ensure the urine is acidic enough to allow Hiprex to work.  It is now one year almost exactly since I have been taking my prescriptions, I have had flare ups which he told me to expect and he treated as they occurred.  I also take lots of probiotics to help minimise stomach problems   I feel 100% better than I did and am currently symptom free but expect to continue with my treatment for some months yet.  I am so pleased and relieved to have found the Prof.  Also I'm so pleased I did not have a cystoscopy as I am sure it would have made things worse for me and I am so sad the Prof.'s treatment is not more widely available.   I hope this will be of help to some who read this forum
heathwhit

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Reply with quote  #3 
Sadly not everyone with similar problems would be sble to afford to see the ge ntlemsn treating your condition, i guess when co sulting anyone not nhs as i know myself every little thing they do you pay for including the medication.It is a sorry state of affairs i know that the nhs cannot get it's act together for better testing facilities, but to be fair maybe they do miss some they also pick up many infections as well.
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Moderatorsusan

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Reply with quote  #4 
Whilst there is currently no option to see the Professor other than privately, Bladder Health UK is actively working with a patient group to reopen the clinic to NHS patients. Additionally there is a specialist who can be seen on the NHS who is treating embedded infections in a similar way to the Professor. She is based in London But she recognises and understands about embedded infections. Additionally there is a further NHS specialist also based in London who recognises chronic infections. Both of them actively research embedded chronic infections alongside the aforementioned Professor.

I appreciate this means travel to London but at the moment you are not being helped by either the urologist who carried out the procedure and has left you in huge discomfort with an infection and your GP who is struggling to manage care. At present the wait time for a referral to the first NHS specialist is around 11 weeks. Perhaps speak to your GP and ask for a referral. BHUK have a full factsheet with contact details for both of these specialists and you can call them for the info.
heathwhit

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Reply with quote  #5 
Thanks Susan i will call the office in the morning to get details of these specialists, i have an appointment with my gp on Monday and will ask him for a referral.Had another result yesterday from york hospital all clear no blood negative result, is there any wonder i am a nervous wreck with all this horrible discomfort going on.All i want is to feel some relief after voiding.Best wishes Heather.
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H.M Whitworth
Amypip

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Posts: 13
Reply with quote  #6 
Dear Tigger11 please can you let me know the name of the professor you have been seeing ?

Additionally, Susan, please can you tell me how I find the names of the other NHS specialists in London that deal with chronic embedded infections ?

Thanks

Amy
tigger11

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Posts: 10
Reply with quote  #7 
Dear Amy

I would be delighted to tell you Professor M-L's details but I'm not sure I am allowed to post his name on the forum?  Please ask Susan if I can do so, she will know all his details  anyway and I am sure will give them to you together with the other NHS specialists.  I cannot recommend him highly enough and if you want any further advice I would be delighted to talk direct but again I think this will have to be through Susan?  Do ask her.
Amypip

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Reply with quote  #8 
Hi Tigger11

Thanks for your prompt reply! I have just rang the Bladder UK helpline number and the lady I spoke to is going to send me some information out in the post regarding the Professor you mention. Did he get you to take the antibiotics at a high strength for a long time ? If you cannot speak on here, do you want my email address ?

Thanks

Amy
tigger11

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Reply with quote  #9 
Dear Amy

Do ask Susan for my email address, I would be delighted to give you all this detail and explain more about the treatment
Amypip

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Posts: 13
Reply with quote  #10 
Dear Susan,

Please can I have tigger11's email address to contact her ?
Many thanks

Amy
tigger11

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Reply with quote  #11 
Dear Susan
Please do give Amy my email address, I am happy for her to have it
ModeratorKate

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Reply with quote  #12 
Morning ladies
 if you click on each others names alongside your posts you should see each others e. mail and Private message links.

also there is a lot of info re the professor under the Biofilm categories that may help.
Kind regards
Kate

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milapande

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Reply with quote  #13 
Hi can someone email me the professor's contact details please. urmila
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tigger11

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Posts: 10
Reply with quote  #14 
Please phone Bladder Health, they will give you all the Professor's contact details and any other information you need
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This Forum is provided by Bladder Health UK and is intended as a place for Sufferers of Interstitial Cystitis, Bacterial Cystitis and Over Active Bladder, together with their family & friends to gather, online in a positive exchange.

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