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  1. #1
    ICN Member MrsMack1985's Avatar
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    Question The UTI standard...what do you think?

    Hello all!

    I was just doing some research for my own personal sanity when I ran across this...please tell me your thoughts, and anyone who believes that they get recurrent "low grade/ sub-clinical" UTI`s ( I include myself in this ) please fell free to analyze this to death and rant away!!!

    http://findarticles.com/p/articles/m...8/ai_18068730/
    ~Jenny, 26 F
    Diagnosed with;

    Mild IC, November 09
    many many many UTI`s (always e coli so far)
    endometriosis
    ovarian cysts

    Currently taking;

    D-Mannose powder, 1 tsp 2 times daily
    D-Mannose capsules, 4 500mg caps once before bed
    Fish oil
    Vitamin E
    Caprylic acid, 1 600mg cap 2 times daily (yeast control)
    Glucosamine Sulfate (heals your bladder!!!)

    I am currently in total remission!!! :woohoo:


    Past meds;

    Elavil
    Percocet
    Dilaudid
    Elmiron
    Pyridium (never helped at all...)
    Detrol (doesn`t do anything anymore)
    Bactrim (10+ times)
    Keflex (THE most useless antibiotic of all)
    Macrobid (10+ times)
    Levaquin (once)
    Cipro (15+ times)
    Rocephin (IV, shots) (8 times that I can remember.)
    Darpaz

    Procedures;

    Ovarian cyst removal 04`(seemed to start everything)
    Cystoscopy Nov 09` dx`d with IC


    "Well I looked my demons in the eyes,
    laid bare my chest, said "Do your best, destroy me.
    You see, I've been to hell and back so many times,
    I must admit you kind of bore me."
    There's a lot of things that can kill a man,
    there's a lot of ways to die,
    yes and, some already did that walked beside me.
    There's a lot of things I don't understand,
    why so many people lie.
    Its the hurt I hide that fuels the fire inside me.
    Will I always feel this way?
    So empty, so estranged..."
    ~Ray Lamontagne

  2. #2
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    I think the onset for me definitely had something to do with UTI's that weren't properly treated.....I'd had 2 or 3 UTI's in my early 20's that responded to antibiotics and I happily went on with my life. Four weeks after I gave birth to my 2nd child in Oct. 2007 I started feeling symptoms of a UTI. I went to be tested and it was negative except for a small amout of RBCs and WBCs. Within the next week I continued to feel bad so I went one week early to my postpartum checkup and my OB said my urine was off the charts for infection. Culture showed enterococcus, though, not e.coli. So clearly I knew my body and that something was wrong a week earlier, but the urine culture came up negative. (Strangely this happened with one of my UTI's in my 20's also, where at my work's medical clinic they told me no infection so I just went home to my GP and in fact did have one.)

    Fast forward 4 months after my son was born in Mar. 2008, I went in again with symptoms of a UTI and when the culture came back was told it was contaminated because it contained a smaller amount of eneterococcus (less than 100,000 colonies). I coincidentally received an RX for azithromycin that day for an upper respiratory infection. When I retested a week later the urine culture was negative. I showed these test results to my OB when I saw her a few weeks later because I was concerned about symptoms of a UTI never really going away and she would have treated me for the enetrococcus even though it was a smaller colony count.....different opinions of different docs and sometimes I wonder if I'd be treated in time if less damage would have been done!

    Of course this could fit in with the idea in the link you provided - am I just genetically predetermined to bladder wall damage from too many UTIs? So maybe that's it - for some of us something is wrong with the cells in our bladders that causes us to produce APF and there is a certain number of infections our bladders can withstand before the damage is done and it will no longer repair itself. But perhaps that number is different for everyone, with some it's only one and some of us can handle 5,6,7.....

    That's my 2 cents for what it's worth.

  3. #3
    ICN Member MrsMack1985's Avatar
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    Hi! thanks for the reply!

    I agree with everything you said,...I have had similar experiences, sometimes the only difference between having a UTI or not is the doctor...seems strange to me.

  4. #4
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    Quote Originally Posted by MrsMack1985 View Post
    Hi! thanks for the reply!

    I agree with everything you said,...I have had similar experiences, sometimes the only difference between having a UTI or not is the doctor...seems strange to me.
    Isn't that the truth!!! For some reason when I do the over the counter AZO strip testing for urinary tract infections it clearly will show and infection, yet when I run the same urine sample over to the doctors it shows no sign of infection. What's more, when I start antibiotics I feel better AND the AZO strips show the infection is gone after antibiotics. Weird...

  5. #5
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    Quote Originally Posted by MrsMack1985 View Post
    Hello all!

    I was just doing some research for my own personal sanity when I ran across this...please tell me your thoughts, and anyone who believes that they get recurrent "low grade/ sub-clinical" UTI`s ( I include myself in this ) please fell free to analyze this to death and rant away!!!

    http://findarticles.com/p/articles/m...8/ai_18068730/
    Interesting article. I do believe that I do get low grade infections even when the bacterial count is around 10,000 or less. My doctor says the low counts can still cause symptoms. For me this causes symptoms of a UTI namely retention and burning in my urethra after peeing, which I don't get with an IC flare. Antibiotics do help too.

  6. #6
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    Hmmm.....I'm going to buy the AZO strips now to test your theory. I've not used them and there are times when it's worse and I'm convinced it's some low grade thing going on.....at the doc they do the dip usually and if that's negative they don't always pursue it any further, you know?

  7. #7
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    Quote Originally Posted by shortstuff View Post
    Hmmm.....I'm going to buy the AZO strips now to test your theory. I've not used them and there are times when it's worse and I'm convinced it's some low grade thing going on.....at the doc they do the dip usually and if that's negative they don't always pursue it any further, you know?
    Yes, I know what you mean! Let me know if anything shows up the next time you feel like you have a UTI. There is another brand of UTI testing kit, but it's not as good as the AZO. Just an FYI. I am fortunate that my doctor has given me sterile cups and wipes, along with a couple of different family of antibiotics so I don't have to run to the urgent care as the uti always seems to happen late at night or on the weekends! LOL! I also like the AZO strips as I don't like taking antibiotics unless I know there is something there.

  8. #8
    ICN Member musiclover's Avatar
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    I think the causes of IC can range from a number of things. For me, I don't believe it is a UTI. Because I have never had a UTI in my whole life. And I just got cultured for the fifth time the other day and it is still negative. Mine seemed to be caused by stress and PFD that occurred just weeks before IC, so I believe that is the cause of mine. The initial stressors are over and I don't feel stressed and since PT I no longer have PFD, but the IC cycle is hard to break.
    35 Years old, live in Northern California

    Update! Feeling much better these days and can usually live my life! I've had severe IC symptoms since Nov '08, and I've had treatments since June '09. I'm so thankful for the info on this forum to help me get to a place where I can feel okay.

    Pelvic pain began July 2008. Urinary frequency began in November of 2008. IC Doctor says I'm one of the worst frequency patients he has had.

    Cystoscopy showed evidence of glomerulations on the bladder.

    Main symptoms: Frequency, burning pain. Sometimes I feel I have to go even after I empty my bladder. Completed 8 months of physical therapy.

    Currently on: IC Diet, Elavil (30mg), Elmiron since June '09 (500mg/day), Hydroxyzine (50mg), Alesse Birth Control to regulate hormones and monthly maintenance PTNS.

    Previously tried and quit: one series of six instillations, Neurontin, Ditropan, Oxytrol, electric stimulation to the pelvic floor, Desert Harvest Aloe, Cystoprotek and Flomax.



  9. #9
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    Quote Originally Posted by Shaelyn View Post
    Isn't that the truth!!! For some reason when I do the over the counter AZO strip testing for urinary tract infections it clearly will show and infection, yet when I run the same urine sample over to the doctors it shows no sign of infection. What's more, when I start antibiotics I feel better AND the AZO strips show the infection is gone after antibiotics. Weird...

    I am not saying you do or do not have UTI's but one of the things the strip test for is white blood count. I think a high WBC can also be present with inflamation. With IC we have inflamation in our bladders. I think that is why they suggest that a patient with IC get the urine cultured. So, I don't know if we can really rely on the at home tests. That being said I must say when my bladder acts up I always try use one to see. I have also noticed that if you do not do a clean catch sample with those strips they always show an infection. But again, I am not saying you do or do not have an infection. I have a good relationship with my IC doc and always ask that she sends my sample out for a culture even if the dip test says I do not have one. No joke, one time the dip test said I did not at all have an infection, not even a small one. When the culture came back it showed a horrible infection. I was really surprised and asked my NP to cath me and send another sample out so she did. Same thing, the in office dip test said no infection at all but the lab said yes, very bad infection. I was a bit hopefully that maybe that was my problem all along but I was wrong. Since that infection I have thought I had another one, she cathed me and sent it to the lab and no infection just wonderful IC. Lucky Me!
    Daily Meds:

    IC-Meds
    Ditropan XL 5 BID, Elavil 50 QD, Elmiron 200 BID, Hydroxine 50 BID. As Needed: Bacofen 20, Prosed DS, Hydrocodone/Apap.

    Other Meds
    Adderal 10 QD, Remmeron 37 QD (I take 1 1/2 of 25 mg)

    With the help of my doctor moving my meds around a bit by increasing this and decreasing that I have found a good combination of meds (for now and I pray a long time from now).

  10. #10
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    My uro-gynocologist actually said that unless the urine sample was catherized and then cultured, there is no way to know whether the bacteria is a urinary tract infection or somehow got in the urine sample from the vagina or something like that.

    Originally my GP just did the dipstick, so even though my medical records show 14 UTIs, my uro-gynecologist said b/c they weren't cultured, we'll never know. And then, I just recently got it cultured using a clean catch, but even that, she says she can't know for sure. This is all really frustrating, because I really want to know whether I get UTIs or not.

    But, I just thought I'd throw her advice out there.

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