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Could IC be caused by Chronic Infection?

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  • Christina Perry
    replied
    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.

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  • ejay80
    replied
    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.

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  • ICNDonna
    replied
    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

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  • ejay80
    started a topic Could IC be caused by Chronic Infection?

    Could IC be caused by Chronic Infection?

    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.













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