Thank you for sharing your story. After 20 plus years of recurring UTI's and negative cultures, I finally found the chronic UTI group and it was for sure heavenly sent! I now know I have a chronic embedded UTI and I am finally on treatment with an embedded UTI specialist on my way to recovery. God Bless Joanne for starting the chronic UTI group. It has saved all of us with chronic infections and given us hope.
So articulately expressed and so clear. Do keep us posted now you have new medical help. You look lovely in your video. I found the CUTIC campaign in the UK then through them I got the information about the Facebook page for the forum for Embedded Chronic UTI 11 months after getting my current persistent UTI that would not go away. Joanna and the admins do dedicated work to bring information and help us to share.The medical profession can get very controversial, and Professor Malone-Lee has written a book about this issue for doctors...but also useful for patients if you can deal with the science. It is complicated in parts. Why would my UTI not go away? Because it was not diagnosed soon enough and the bugs proliferated but were not found or identified for 11 months. They produced biofim and under biofilm bugs are even harder to get rid of, let alone the issue of resistance to antibiotic. Early on, based on white blood cells found, I was treated with very short courses of antibotic - 3 days here and 5 days there and not very high doses either. I have had UTIs in the past that have cleared up quickly. Not this. I do not get the pain like you have had nor the bloating. But the Urologist I saw refused to believe there was an infection (like your experience early on) and was going to do urine flow tests, cystoscopy, urethra stretching, botox, and goodness knows what nonsense. But then bugs were found by a private consultant who is on the Chronic Embedded UTI list of doctors who people on te FB page recomment. he uses a London Laboratory. I of course paid for his consultation and for the test. Its not cheap. Lo and behold -two nasty pathogens found that are known to cause UTI symptoms. I had a really poor urologist in my local hospital, and one a locum consultant who shouted at me that "I had no infection." I was able to tell them they were wrong and I complained about the shouting to the Hospital Chief Executive. You will know from experience that the standard urine tests are just not good enough anywhere. But I am now discovering that there are different tests for the consultant I paid for and for a urine test (I will still pay for) at the same lab ordered by my GP at my request. I was shocked. I have been told that the Lab spends less time on GP ordered tests than they do on Prof K's tests. I am asking the lab what this is all about as it sounds deeply concerning. What urine tests did you have? Have any bugs ever been found?
I'm in the same boat Paula. I am a month into treatment with a chronic UTI specialist as well. My UTI started in Sept. 2020 with E. Coli. I was given 3 days of antibiotic. My cat got 2 weeks when he had one.........lol
sending love ❤
Sending so much love to you Paula xxx
Thank you for sharing your story. After 20 plus years of recurring UTI's and negative cultures, I finally found the chronic UTI group and it was for sure heavenly sent! I now know I have a chronic embedded UTI and I am finally on treatment with an embedded UTI specialist on my way to recovery. God Bless Joanne for starting the chronic UTI group. It has saved all of us with chronic infections and given us hope.
This was taped three years ago. Any updates, Paula? I'm so sorry to hear about all your troubles.
So articulately expressed and so clear. Do keep us posted now you have new medical help. You look lovely in your video. I found the CUTIC campaign in the UK then through them I got the information about the Facebook page for the forum for Embedded Chronic UTI 11 months after getting my current persistent UTI that would not go away. Joanna and the admins do dedicated work to bring information and help us to share.The medical profession can get very controversial, and Professor Malone-Lee has written a book about this issue for doctors...but also useful for patients if you can deal with the science. It is complicated in parts. Why would my UTI not go away? Because it was not diagnosed soon enough and the bugs proliferated but were not found or identified for 11 months. They produced biofim and under biofilm bugs are even harder to get rid of, let alone the issue of resistance to antibiotic. Early on, based on white blood cells found, I was treated with very short courses of antibotic - 3 days here and 5 days there and not very high doses either. I have had UTIs in the past that have cleared up quickly. Not this. I do not get the pain like you have had nor the bloating. But the Urologist I saw refused to believe there was an infection (like your experience early on) and was going to do urine flow tests, cystoscopy, urethra stretching, botox, and goodness knows what nonsense. But then bugs were found by a private consultant who is on the Chronic Embedded UTI list of doctors who people on te FB page recomment. he uses a London Laboratory. I of course paid for his consultation and for the test. Its not cheap. Lo and behold -two nasty pathogens found that are known to cause UTI symptoms. I had a really poor urologist in my local hospital, and one a locum consultant who shouted at me that "I had no infection." I was able to tell them they were wrong and I complained about the shouting to the Hospital Chief Executive. You will know from experience that the standard urine tests are just not good enough anywhere. But I am now discovering that there are different tests for the consultant I paid for and for a urine test (I will still pay for) at the same lab ordered by my GP at my request. I was shocked. I have been told that the Lab spends less time on GP ordered tests than they do on Prof K's tests. I am asking the lab what this is all about as it sounds deeply concerning. What urine tests did you have? Have any bugs ever been found?
I'm in the same boat Paula. I am a month into treatment with a chronic UTI specialist as well. My UTI started in Sept. 2020 with E. Coli. I was given 3 days of antibiotic. My cat got 2 weeks when he had one.........lol
The cranberry juice thing is so ridiculous.
Did it work? I hope so x
You need to contact professor Malone Lee. Please do he cured me.