Could IC be caused by Chronic Infection?

[ejay80 ICN Member Find all posts View Profile Close ejay80]

I asked Professor Malone-Lee (Chronic UTI expert, London) what percentage of patients treated in his clinic are diagnosed with Chronic Urinary Tract Infection following a misdiagnosis of IC and PBS etc. This was his answer, ‘It may be over 90%. We are about to do a careful analysis of patients with the IC diagnosis, their symptoms, pathology, and the changes on treatment.........’.

Recently Professor Malone-Lee was asked the following questions:

You keep saying ‘successfully treated’. Will you please define for me what that entails exactly?

What symptoms ceased?

Duration of symptomless if any?

What was the course of treatment?

His response:

‘We used a symptom score
https://link.springer.com/article/10...192-017-3472-7
and microscopic pyuria
https://www.ncbi.nlm.nih.gov/pubmed/23305196

And here are the papers using them which answer your queries
https://link.springer.com/article/10...192-018-3569-7

https://link.springer.com/article/10.1007/s00192-018-3846-5’

Why not take a look at the links and consider whether your bladder pain and symptoms are being caused by chronic infection?

The diagnosis of Interstitial Cystitis is one of exclusion. Tests (such as dipstick and culture) to rule out UTI as the cause are unreliable and frequently result in false negative results. UTI can not be properly ruled out until a urine sample has been analysed under a microscope. If there is evidence of white blood cells then infection is the most likely diagnosis.

[ICNDonna ICN Staff Find all posts View Profile Close ICNDonna]

to the IC Network.

I agree that a dipstick test can't totally rule out infection --- I see it as a "symptom," rather than a diagnosis. It does have some value in many instances, since a positive indicates that a culture should be done to identify the specific "bug" involved so it can be treated appropriately if there actually is infection present. I suspect that the dipstick is used so much because it can so often be accurate.

When there are symptoms present, even if the dipstick says "no infection" there should be a culture to be more certain.

I think there are different causes for interstitial cystitis to develop --- trauma is one --- I developed IC during recovery from a major abdominal surgery. Frequent infections could also be traumatic to the bladder lining, which also fits my personal opinion about cause. Heredity could also be a factor. I hope that one day soon a specific cause will be found, with a cure not far behind.

I hope you are doing well. I encourage you to continue researching.

Sending healing thoughts,
Donna

[ejay80 ICN Member Find all posts View Profile Close ejay80]

Unfortunately cultures can also provide false negatives. Many patients who have negative dipstick tests and negative cultures actually have chronic UTI (myself included). In these instances the only way to properly exclude UTI as the cause of IC is to look at a sample of urine under a microscope. If white blood cells are present then the most likely cause is infection.

Even if cultures are positive there is no way of telling which bacterium is causing the infection. There are 400-500 bacteria living in the bladder so it is impossible to tell which one is causing the infection. The bacteria that show up on the culture/DNA test might just be the ones that were easy to grow, they might not necessarily be the ones that are pathogenic.

Please see research paper:

https://jcm.asm.org/content/57/3/e01452-18


In respect of surgery, if urinary catheters have been used and there is bladder pain and associated symptoms following surgery then it is likely to be infection caused by the catheter.

[Christina Perry ICN Member Find all posts View Profile Close Christina Perry]

I am currently on Dr, Malone's treatment plan and I travelled from Canada to be seen at his clinic. I was diagnosed with an embedded infection. During my third week of treatment I had to go to the ER as I developed a very bad UTI the doctor felt spread to my kidneys. I am now on an a different anti biotic for 4 more days. I have had every treatment and medication that is available as well as homeopathic treatments and nothing helped me. I had a hydrodistention, bladder intstills for six months and had the Neurostim implanted in my back. It was a very painful recovery and has done nothing for me. I went to England out of desperation as in Canada this condition we have is not taken seriously. I have a close friend whose daughter took her own life because of it. I am hoping this treatment can help me as I have nowhere else to turn now. I have a very good diet, I do not drink coffee or alcohol and I do not eat junk food. I am a vegan and do not consume any animals products. If anyone has had any success with this treatment, please let me know. Thank you all for listening.

[poolpet ICN Member Find all posts View Profile Close poolpet]

Christina, I was diagnosed with chronic bladder infections years ago. I did have bladder infections but I was getting ic symptoms after the infection was gone - so docs were telling me I still had infection and put me on another antibiotic. It is imperative that you determine whether you have infection or is it an IC flare up. you need to have test strips ready for at home testing. Adhere to the IC diet in mean time. I am so sorry for you friend..

[ICNDonna ICN Staff Find all posts View Profile Close ICNDonna]

One thing some have found helpful is to keep a detailed diary, noting time of day, everything that goes in your mouth, urinary frequency, activities, pain levels. Sometimes sensitivities can vary and there might be something that's okay for MOST people with IC, but is an irritant for others. I think it's worth a try.

Sending warm hugs,
Donna

[Freddies Girl ICN Member Find all posts View Profile Close Freddies Girl]

I have had this wretched condition for 6 years. I woke up back then with the UTI that never went away. I find big similarities with my husband who years ago suffered terribly with a stomach ulcer. He couldn’t eat and drink numerous things without causing a severe flare. Sounds familiar? A bacteria was discovered- helicobacter pylori. A course of 3 types of antibiotics killed it. Years of suffering gone in 3 weeks. Yes I do believe I have an undiagnosed bacterial infection. The trouble is nobody else in the medical profession agrees with me. The antibiotics are there why won’t they just give them to us. We have nothing to lose and everything to gain.

[SBMom ICN Member Find all posts View Profile Close SBMom]

there are several doctors (mostly in the UK) and some on the East Coast of the US who work with embedded infections. If you have Facebook I could give you the links to join several groups that are really informative.. One group actually has a well known urologist as a member. I'm pretty sure we are going to make the drive from California to Shreveport LA where he is so that I can become one of his patients in the next month or 6 weeks. That's his speciality UTIs that never go away!! Lynne

[ejay80 ICN Member Find all posts View Profile Close ejay80]

Update from British Association of Urological Surgeons. BAUS acknowledge the problems with urine testing & the need to improve chronic UTI diagnosis. Please follow @cuticuk on Twitter for more info.

[ejay80 ICN Member Find all posts View Profile Close ejay80]

The British Association of Urological Surgeons has acknowledged the problems with urine testing and the diagnosis and treatment of chronic UTI, agreeing that the standard technique and microbiological threshold to diagnose a UTI may be inadequate.

Their letter to us states:

BAUS has been contacted by several patients in response to recent media attention on the issue of chronic UTI.

In our role of seeking the best possible urological care for all UK patients, we are naturally concerned to hear experiences/difficulties related to those who are symptomatic in the light of traditional “negative” urine cultures. The diagnosis and treatment of an often debilitating set of symptoms remains difficult and unclear. There is, as yet, no official diagnosis of what a chronic UTI is and whether this might be distinct from recurrent or relapsing UTIs and we recognise the challenge in accurately outlining the differences and/or similarities of these conditions.

We are very much aware of the work and treatment regimens of Professor Malone-Lee and agree that the classic technique/microbiological threshold to diagnose a UTI may be inadequate as it was developed in the 1950s. Many urologists do realize that new, more sensitive and accurate techniques are required and should be investigated. New techniques are in their infancy and require further assessment to establish diagnostic accuracy before widespread NHS usage. We also would like to suggest that advances in this area would best be brought about by consultation with, and involvement of, our microbiological colleagues.

We recognize there may be individuals who are symptomatic even without the presence of white cells in their urine – so the significance of this finding is also unclear but probably helps to indicate an underlying infective or inflammatory process. There is also the difficulty of understanding the relevance of detecting organisms in symptomatic patients when they can also be detected in those who are asymptomatic. We now appreciate that the urine in asymptomatic patients is not always sterile, as previously thought.

The call for long-term antibiotic treatment also has to be weighed against the need for strong evidence that it is effective and that of the risk of the development of antibiotic resistance. There is currently a drive by NHS England to reduce antibiotic usage.

Two of our leading BAUS urologists in this field – Mr Chris Harding and Mr Ased Ali – are currently working in conjunction with Professor Malone-Lee to address these exact issues, by designing a randomized controlled trial to provide an answer as to how we might best investigate and treat these patients. A trial protocol is currently being finalised with a view to making funding applications in the spring of 2020.

I would hope to reassure you that we are taking this problem seriously and are working to provide more evidence and guidance as to how we, as urologists, diagnose and manage this challenging and significant problem.

D J Summerton President, BAUS

October 2019

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Amendment: Dr Rajvinder Khasriya working on randomized controlled trial

We want to highlight one small amendment to the statement. The trial is being developed by Rajvinder Khasriya, lead Consultant of the NHS Lower Urinary Tract Symptoms (LUTS) Clinic, Whittington Hospital London, Chris Harding, Consultant Urologist at Newcastle Freeman Hospital, Ased Ali, Consultant Urologist at Mid Yorkshire Hospitals and Doug Tincello, Professor of Female Pelvic Medicine and Reconstructive Surgery, University Hospitals of Leicester NHS Trust.

Dr Khasriya trained under Professor Malone-Lee and continues to maintain the protocols that he established at the LUTS clinic before his retirement from NHS practice last year.

The study is currently in the application stage and will be a multi-centre trial which will be critical to give weight to the trial results. We will keep you updated once the trial has received approval and is underway. It is anticipated that the study will last for a year.

[ejay80 ICN Member Find all posts View Profile Close ejay80]

We've just received a statement from British Society of Urogynaecology which we have permission to share publicly. It will be added to our websites and Twitter very shortly. Together with the recent BAUS statement, CUTIC feels we are at last making a real difference and hopefully change is on the horizon!

Statement reads as follows:

We were sorry to hear of your difficulties in reaching a resolution to your chronic UTI problems. We agree this is a serious problem and affects a large number of women.

BSUG takes Chronic UTIs very seriously because of the huge impact on well being and quality of life and we are committed to raising awareness amongst our members through educational events like the Annual scientific Update and promoting research into this area. In fact this year we have just provided a grant to encourage research into the study of the biome of the bladder and factors that contribute to recurrent and chronic UTIs to allow us to find solutions into this problem.

[neohioic ICN Member Find all posts View Profile Close neohioic]

Hi, yes I truly believe IC in many people is a chronic infection that is difficult to detect. It is stuck in the bladder wall and difficult to kill with anti-biotics. That is why I believe having bladder removal is a welcome relief to people suffering this condition. I've been suffering over 2 years. I finally found something that is working. It is methenamine. It is also available in prescription in a drug called hiprex. It is not an anti-biotic. It is an anti-septic. When it goes into your urine after taking the medicine it turns into chemicals that kill bacteria. Supposedly bacteria do not gain resistance to anti-septics, only anti biotics. I new this stuff worked when I started taking cystex, which has a smaller dose of methenamine. It was helping alot. The rx dose helps even more. I"ve been on the rx dose for a little over a week. I am not cured but I"m doing much better. Some days I feel like I"m 80-90% better. Other days only 50% better. There is no doubt it is helping me. I don't think bladder instills with dmso will cure the infection either. I think the infection is stuck in the bladder wall, and it takes different ways to kill it. Maybe longterm anti-biotics with different types can fix it but that is risky. I've heard of at least one person on this site who took anti-biotics for 1 year, and it gave her C-Diff. BAsicaly that is permanent diahrea. You don' want that. You would be better off having the bladder removed.

[SBMom ICN Member Find all posts View Profile Close SBMom]

thanks for the info --- I have heard of Hiprex but you cannot take it while you are taking antibiotics. I've talked to a lot of people who said removing their bladders did not solve the problem!!! Is cystex a prescription?

[ICNDonna ICN Staff Find all posts View Profile Close ICNDonna]

I just googled it and it's available over the counter. Be sure to let us know if it helps.


Donna

[SBMom ICN Member Find all posts View Profile Close SBMom]

thanks