Now a patient...

Posted , 5 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hi everyone.   Just joined and wanted to intro myself.  I actually retired from a career as a military physician (family med) last year and started teaching.  Mostly staying home to take care of a family medical issue.

I've had chronic recurring UTIs since I was in my early 20s.... maybe 15 since then (Im a 42 yo female in the US... couldn't find an American support group this big).  This year, gotten especially bad, with one after another, mostly treated with Macrobid/Nitrofurantin, always E coli.  I saw a specialist in my 20s, who did the full workup, including cystoscopy, flow studies, contrast imaging, etc.  Found nothing unusual anatomically back then.  Now with my recurring UTIs getting worse, I'm set to see another urologist tomorrow.  

Very frustrating having lots of book knowledge (and seeing similar in patients in the past) but not being able to help myself.  I've found that sometimes patients are more familiar with some diseases than some doctors, just from personal experience.   But it is frustrating because as scientists, we are trained not to put too much weight on anecdotal evidence (often for good reason).  A good example of this is D-mannose.  There is a ton of accumulating evidence that it works well, few side effects, yet many of my colleagues don't even know about it.   I have only recently come across it myself and bought a bottle this morning.  There is good science behind it and I wish I had discovered it sooner.   I'm at the point where I am getting desperate for any leads on other preventative measures.  Has anyone tried Goldenseal?  Any other ideas beyond the common tips (hygiene, peeing with sex, hydration, vitamin C/cranberry, etc)?

0 likes, 8 replies

Report

8 Replies

  • Posted

    What don't you try an antibiotic other than Macrobid and Trimethoprim?   Maybe these antibiotics aren't strong enough and some 'persisters' are left behind.   Also, maybe you are a candidate of long term prophylactic antibiotic.

    I am beginning to wonder if there are any women that have has a cysto that has shown something.  When we get sent to a Urologist, that's usually the first thing they want to do.  That, and an Ultrasound.  The later is at least not invasive.

    From all my reading research, some women are just prone to UTI's and nobody knows why.

     

    Report
    • Posted

       Well, the cultures have always come back as non-resistant.   I am starting to wonder about a Hidden resistance problem as well and well as the specialist tomorrow. Usually doctors are not too eager to change antibiotics if they have been working ( because of potential allergic reactions), but I too am starting to wonder if I am harboring a resistant strain outside my urethra (being a former healthcare worker, puts me at higher risk for being colonized elsewhere, like my nose, in the asymptomatic windows in between UTIs).

      Yeah, a lot of women do get negatives after cystos, but they run them because it's a quick way to rule out "smoking guns" (polyps, radiolucent stones, anatomic issues like fistulae).   I agree, it's very frustrating. A quick survey online, you can see so many women suffering from this recurring disease that impacts our daily lives (Im afraid to have sex with my boyfriend and eat many things now, go traveling), but it's considered "ideopathic" (= doctors can't pinpoint a cause).

      I've been over here rolled up in a ball in screaming pain for 4 hours now, Macrobid only just started to kick in.

      Report
  • Posted

    Retired Doc, I got my very first UTI in Oct. 2016 at age 70.  It was ecoli sususeptible to serveral different antibiotics. I'm not exaggerating when I say that the antibiotic would clear up the infection quickly (as proven by cultures taken while on abx).  Then, 4-5 days after I stopped abx, the UTI was back.  I had U/S and CT Urogram.  Clean.  No Cysto.  Over the last 10 months, I've been on antibiotics consistently.  

    Around, April, I went on prophylatic abx 250m g Ceftin.  I stayed on that Until June 20.  At that time, I decided to see an Infectious Disease doctor just to get a different perspective.  He told me he wanted me to stop the Ceftin because it was not the best choice for long term use.  I told him that I would for sure get another UTI in a couple days.  He said we'd treat that when it happens.

    Well, I did not get another Asymomtatic UTI.  However, I got a couple Urine cultures and now I have Enterococcus.  Can you believe it?  8 months of Ecoli, and now it is gone and replaced with this gram positive horrible bacteria.

    The Infectious Disease doc did not want to treat me with abx because I am asymptomatic.  I also juggle two different Urologists (they don't know about each other).  I got one of them to give me a script for Nitrofurantoin which is sensitive to this bacteria.  I finished my 7 day dose a week ago today.  I don't know if it wiped out the Enterococcus or not, as I am still asymtomatic.

    All this info was to point out that it IS possible to lick these Ecoli Uti's, but don't ask me how it happened with my case.  All I can think of is the low dose abx for months took care of the stragglers.

    I read that Enterococcus waits for the right time and exploits the opportunity to surface once antibiotics have killed of the suseptible bacteria.  Long term use of  broad specturm antibiotics can bring on Enterococcus.

    Report
    • Posted

      Wow, quite a story... thx for sharing it.  Mine are getting worse with each recurrence and it's scary... onset of symptoms was less than an hour this time before excruciating pain and not just hematuria, but clots.  That's why I've started carrying an extra script on me for Macrobid, but even doctors go through denial when it comes to personal health! By the time the pain kicks in, it's so fast, I've been forgetting to get a pre-treatment urine sample.  So whatever bugs show up in culture once I get to the doctor... just don't know how accurate a reflection they are of my pre-abx flora.  I really worry about resistance.  It's a big problem lately with UTIs.  Long term antibiotics throws off your normal native flora proportions, sometimes for years (and that's all over your body).  That's your first natural line of defense, so it really has me concerned.  I take probiotics after antibiotic courses and eat yogurt, but wondering if I should apply locally (have heard of women getting their vaginal Lactobacillus back this way).  

      Report
    • Posted

      What I mean to say is this could be the real reason some women with ideopathic recurring utis are more prone... the vicious cycle of antibiotics.  Kill off all bacteria, good and bad.... good native colonizers normally stave off the bad by outcompeting them.... abx course over, nothing left to keep the bad from creeping back in.  Trying to break the cycle is hard.
      Report
    • Posted

      One of the things I believe is that the entire body is an interrelated entity, not a discrete construct of connected systems.  Thus, re-creating and keeping the balance of bacterial flora is very difficult.  Even the "bad" bacteria probably play a very important part--just hasn't been discovered--yet.  

      As Marilee has pointed out in earlier posts, women who are thought to be consistently lacking in cleanliness have been found not to suffer from uti's. In my mind, they probably have a flourishing and healthy micro biome.

      Report
  • Posted

    I would be very concerned about the noticeable blood.  Mine was alway microscopic.  I would probably opt for a cysto or CT urogram in that case.

    For sure, the antibiotics wreck havoc with your system and the resistance factor is a serious problem.  Unfortunately, I was a bit clueless about that initially.  Then I did my research.

    I've loaded myself up on probiotics.  I take one oral one for vaginal/urinary and an oral on for intestinal.  I also used the vaginal suppositories to put back good flora.  I take two cranberry supplements.  One has whole cranberry and the other (ellura) has 36mg Pac.  I took them all along, so they aren't the reson for my success in eliminating the ecoli.

    Oh, also I am on estrogen cream, and I believe that is what help.  Initially I was inserting it up the vagina with the applicator.  The urologist told me to put it on the exterior and just use my finger to insert a little up in the vagina.  I think that did the trick.  The tissues were thin and starved of estrogen.

    I never had any serious symtoms with my UTI's.  Just burning/urgency.  But I got on ABx right away.  What can one do?  You can't just allow the infection to go to the kidney.

    Report
  • Posted

    Be careful with the meds. As a physician you know they wreck havoc on the tummy. That is my prob. Started in may. Hard time getting gone. Finally relief w cipro but now have developed tummy probs. cat scan clear everywhere but seems when I have milk in any form diarrhea. I've been laying low on milk and ibs dieting and seeing how it goes. So just be careful everyone. 

    Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up