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TMS or an recurrent UTI because of biofilm bacteria?

Discussion in 'Support Subforum' started by Time2be, Dec 8, 2018.

  1. Time2be

    Time2be Well known member

    This is difficult and it is not really getting better .. I was in much better mood lately and also hoped that I will do better pain wise. But I don't. Today I woke up with bladder and urethra pain. I checked my urine, again some leucocytes. My urologist tells me that leucocytes can be a stress reaction. My urine has been checked at the lab three time the last four weeks. Nothing could be found (Once I had also some leucocytes).
    Now I read on the internet about doctors in the UK who treat bladder and urethra pain as reccurrent UTIs. As far as I understood is the main problem that the standard lab cultures are not precise and that other techniques are better suited to find the bacteria. Basically new methods find many more bacteria than the standard testing before. The treatment would be long-term antibiotics. That's horrible, of course. And long-term means like between 3 and 12 months.
    The microbiology behind that is that bacteria are often not free floating but come in lumps as biofilm. They are embedded in the tissue. Biofilm does exist. So, it is not all speculative, I guess.
    I am in so much doubt! In know that my pain also is dependent upon stress level and emotions. However, I don't see any success anymore the last two months. Some days were not as bad as others, yes. At some point I was hopeful and felt much better.
    Should I invest even more money into these other testing techniques? Travel to the UK (from Denmark). And the horror of long term antibiotics?
    What do you think?
     
  2. Snowman

    Snowman Peer Supporter

    Where in the UK is the testing?
    I had a private one done with urine sample sent off. To check for plasma ones etc. And still came back clear. Antibiotic therapy I hear tho if you get the right ones and do them in right order can be very effective ..
     
  3. Time2be

    Time2be Well known member

    Hi Snowman, the doctor’name is Malone Lee. This is not a lab, he looks into fresh urine. As I said, his long term antibiotic treatment is rather unconventional. There are others who do more lab examinations. You can find a list on the homepage chronicutiinfo.
    I am in serious doubt about everything. Started with an antibiotics on Saturday, yesterday evening I was pain free. This morning again pain.
     
    Snowman likes this.
  4. Snowman

    Snowman Peer Supporter

    I agree with you...I'm also in doubt this is is all emotions alone. Have to be careful taking antibiotics long term or even therapy as you could cause really bad gut issues as my dr has told me. Do you get any leg pains in tendons or calfs ? .
    I hope it passes soon for you I really do.
    Have you ever taken baking soda as I've just started having it in the morning with a glass a water and seems to settle things down in noticing.
     
  5. Time2be

    Time2be Well known member

    Hi, you think pains in tendons or calfs from antibiotics? No, never.
    To inform you: I wrote a long email to my urologist and she ditched the whole idea of embedded bacteria, biofilm and also that the culture are not showing all bacteria. She also told me that she examines the urine under the microscope and that I never had leucocytes. that I should have known before, I thought they use dipsticks for a first look and then culture the urine. The dipsticks might me not correct or sometimes you can have them. And she tells me to look at my life, live my life and not focus on my bladder.
    I really hope I can trust her. I also asked her if she had the slightest doubt about her diagnosis then she would start further examinations. The idea of giving antibiotics for one year or so, she found appalling. This would corrupt the immune system and that would result in even more UTIs and other infections.
    The idea of going to London and undergoing a more or less speculative form of therapy is not very attractive to me either. So, I think I will give the TMS way another, more serious try. My problem is that I don't trust my gut anymore, I am all intellectual. And the more studies you read the more confused you are. As a scholar it is easy to write in an article the little phrase "to the best of our knowledge" - but if you have to act upon it, you just want to get things right. And that you don't get from science. Oh, that's difficult for me!
     
    Snowman likes this.
  6. Snowman

    Snowman Peer Supporter

    I got worried today again. When I looked into biofilm bacatria it comes up with lyme disease also. Have you had a blood test for lyme yet. I've had 2 and both negative but read that they can show a false negative and a more detail blood test is needed. Every day is so hard atm
     
  7. Time2be

    Time2be Well known member

    don't bother about Lyme. there are specific symptoms with Lyme, a friend of mine has it. The nerves are affected. She had seizures. Bladder problems or prostatitis are not really in the centre of Lyme. And there is a bit of a hype with Lyme disease.
    yes, days can be hard. I know. I loathe waking up with anxiety. However, there will be another day and another, and at some point you will feel fine .. I can recommend to read the succes story of Dorado. Everytime I am very down, I read his success story and it helps me and gives me hope.
     
    Last edited by a moderator: Jan 27, 2019
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