Chronic UTI

Posted by clkurth @clkurth, Sep 30, 2023

I keep getting UTIs about once a month. I’m guessing my immune system is weak in my bladder. I take cranberry gummies daily, use good hygiene, take D-Mannose supplements and have doubled my water intake. Anyone have any other suggestions?

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@lbrockme

I've had kidney surgeries for kidney cancers. After last surgery had uti every month for 4 years. Two sepsis hosp stay, With organ failure, as I had no symptoms.
Things I changed
1) learned the specific bacteria that was recurring
2 ) tried all the typical uti things , d-mannose etc etc did not help , including a low dose antibiotic that was hard on my kidneys
3) started testing daily at home for uti ... ordered strips thru Amazon to catch early
4) began to see pattern of
A) coming off the only anitibotic that works... and daily test showing increase in bacteria immediately
B) some symptoms I did not notice were there... ie fatigue , increase in getting up at night , increase in sugar craving but not hungry otherwise
5) I learned to advocate well... my hmo has a policy to only start you on one med if uti suspected... but it does not affect my bacteria, and then they wait till it doesn't work or three or four days for bacteria test... by then, I am literally dieing with everything shutting down from sepsis. So I am blunt , very polite, and request what works immediately , explain, I've been testing, seen increase in these symptoms and have had sepsis x's 2. Sometimes I have to push , but I always do so respectfully. I encourage reviewing my tests to see consistent bacteria results etc,
6) I did research to identify if any probiotic works on my bacteria . Found one small one group. It does not irradicate it but helps to reduce multiplication of the cells
So I find a good product of that and started it, instead of one I was using
7) Dr prescribed low dose keflex after nephrologist and urologist consulted. I emphasized my quality of life needs and willingness to test issues as needed
8) I started taking a good moringa product to increase my general immune system, along with my regular vitamins
9) I still wear loose pajama type pants with no undergarment around home. Excellent hygiene still etc
Result ...
I'm now on 100 days with no infection... an absolute miracle for me . After more then 50 infections requiring treatment since Jan 2019.
I actually slept this month a few nights for 6 hrs without having to get up to pee. After years of every two hours ... or even hourly ... it has totally made my life better
Hoping you find what works for you

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I came across your message and was wondering if you would give me the name of the probiotic and moringa you take? I have googled and so many products come up...Thanks!

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@mkmeier

I came across your message and was wondering if you would give me the name of the probiotic and moringa you take? I have googled and so many products come up...Thanks!

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Sure.
Moringa
Fresh Healthcare 1000mg pure premium moringa
Remember though it is high in oxalate, so can affect that if you take too much, especially if you are prone to stones. I had to lower from daily to only 2xs weekly when my levels increased too much

Probiotic
INESSA advanced daily biotic
Lactobacillus rhamnosus GG

Both availed thru Amazon etc

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@lbrockme

Sure.
Moringa
Fresh Healthcare 1000mg pure premium moringa
Remember though it is high in oxalate, so can affect that if you take too much, especially if you are prone to stones. I had to lower from daily to only 2xs weekly when my levels increased too much

Probiotic
INESSA advanced daily biotic
Lactobacillus rhamnosus GG

Both availed thru Amazon etc

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Thank you so much!

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I had pelvic floor reconstruction back in 2018 and have had constant UTIs ever since. Several doctors prescribed me antibiotics but as soon as the prescription is done, it comes back. Could this be due to the mesh? Any suggestions or comments would be appreciated.

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@koda9709

I had pelvic floor reconstruction back in 2018 and have had constant UTIs ever since. Several doctors prescribed me antibiotics but as soon as the prescription is done, it comes back. Could this be due to the mesh? Any suggestions or comments would be appreciated.

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@koda9709 Welcome to Mayo Clinic Connect. That must be very frustrating for you, having UTIs almost all the time. A question for you, is have the doctors ever done a culture on the UTI, to see which antibiotic causes a response to the infection? Perhaps what they are using is not the correct one. Another thing I recall my doctor telling me, is a course of 10 days with an antibiotic for a UTI may have a much more beneficial outcome, not the normal 7 days.

Will you check with your doctor and see about a culture?
Ginger

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Update to the above post from me, Vicki.

I went through some antibiotic protocols with a new specialist who is familiar with another protocol found on this Mayo site. It is two methenamine antibiotics daily, and two D-Mannose capsules daily. It is working well so far, and it's been about 3 1/2 months since my last dose of a two week stint with my last protocol of antibiotic, until I was well out of infection stage. I immediately started the above daily regimen the next day, and have religiously followed it since. I also drank coffee only in the morning and no pop or flavored carbonated waters for two weeks. Hard for me, but I would do anything to get off that awful merry go round of UTIs. My bladder seemed to heal its inflammation, to the point where I now can go about 90 minutes without using the bathroom, and have no more spasms in my bladder. My flow is easier also. I drink a lot of water, but have not measured it to tell you how much. I now have hope I can live a near normal live style I used to keep, just less coffee and less pop. A reasonable amount now.

Good luck to anyone else who has this recurrent bad UTIs issue !!!

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Update to the above post from me, Vicki. If you have trouble finding it, I had UTIs constantly at the end of a two year problem, the UTI last October leaving me with sepsis and hospitalization for near two weeks, almost died. I also have a spastic bladder. This is how I am dealing with recurrent UTIs now:

I went through some antibiotic protocols with a new specialist who is familiar with another protocol found on this Mayo site. It is two methenamine antibiotics daily, and two D-Mannose capsules daily. It is working well so far, and it's been about 3 1/2 months since my last dose of a two week stint with my last protocol of antibiotic, until I was well out of infection stage. I immediately started the above daily regimen the next day, and have religiously followed it since. I also drank coffee only in the morning and no pop or flavored carbonated waters for two weeks. Hard for me, but I would do anything to get off that awful merry go round of UTIs. My bladder seemed to heal its inflammation, to the point where I now can go about 90 minutes without using the bathroom, and have no more spasms in my bladder. My flow is easier also. I drink a lot of water, but have not measured it to tell you how much. I now have hope I can live a near normal live style I used to keep, just less coffee and less pop. A reasonable amount now.

Good luck to anyone else who has this recurrent bad UTIs issue !!!

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@vlbondon

Update to the above post from me, Vicki.

I went through some antibiotic protocols with a new specialist who is familiar with another protocol found on this Mayo site. It is two methenamine antibiotics daily, and two D-Mannose capsules daily. It is working well so far, and it's been about 3 1/2 months since my last dose of a two week stint with my last protocol of antibiotic, until I was well out of infection stage. I immediately started the above daily regimen the next day, and have religiously followed it since. I also drank coffee only in the morning and no pop or flavored carbonated waters for two weeks. Hard for me, but I would do anything to get off that awful merry go round of UTIs. My bladder seemed to heal its inflammation, to the point where I now can go about 90 minutes without using the bathroom, and have no more spasms in my bladder. My flow is easier also. I drink a lot of water, but have not measured it to tell you how much. I now have hope I can live a near normal live style I used to keep, just less coffee and less pop. A reasonable amount now.

Good luck to anyone else who has this recurrent bad UTIs issue !!!

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What kind of specialist treated you with the new antibiotic and the cranberry d-mannosse? A urologist? I felt like my transplant center did not have the correct specialist to help me. I worked with my nephrologist there and sought my own urologist who prescribed the kephlex daily 250mg. So glad you found someone to work with you on a new protocol and it works. I will ask my nephrologist what he thinks of it for me. After 4 bladder infections in a row, I was so scared of having another and ending up with sepsis, that I grabbed the kephlex. All the best to you, BB

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@blbird33

What kind of specialist treated you with the new antibiotic and the cranberry d-mannosse? A urologist? I felt like my transplant center did not have the correct specialist to help me. I worked with my nephrologist there and sought my own urologist who prescribed the kephlex daily 250mg. So glad you found someone to work with you on a new protocol and it works. I will ask my nephrologist what he thinks of it for me. After 4 bladder infections in a row, I was so scared of having another and ending up with sepsis, that I grabbed the kephlex. All the best to you, BB

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I hope you can find the right course for you before you end up like me, recurrent infections for two years, the worst one with no symptoms which led to near death from sepsis and hospital stay near two weeks on IV antibiotics, there and at home afterwards. CDC got involved with that treatment. First the D-Mannose I take has no cranberry but that may be a moot point. I see a specialist, a urologist who also does surgery etc. recommended by my internist. Find the best you can access easily. I'd say the best course is to be on an efficient antibiotic for the UTI you tend to get, which is probably coming from within your body, like most of us on this blog. Not from cleanliness or lack of such. E.coli is always everywhere and if your bladder is spastic or easily inflamed, that bacteria will attack from within. Drink less coffee and carbonated drinks and sugar for a couple weeks to give the bladder a chance to heal itself. I went almost to just water except for morning coffee for three weeks and that made a definite difference itself. Do the antibiotic for two weeks, not one. Then immediately start the methenamine 1 gram twice a day, and the D-Mannose 2 grams twice a day. I suspect the methenamine caused increased hunger and I gained weight initially so I switched to taking it a night only, both pills. The D-Mannose needs to be there morning and night, though I take my second dose mid afternoon since I resumed my pop occasionally. Keep some test strips handy, the symptoms will end up hitting on a Friday night, and if so, go to the ER or minute clinic. I use Siemens Multistix 10 SG.

Each doctor will inevitably go through several trials of antibiotics to make sure you aren't exaggerating or incorrect, but should end up with this new protocol. If the doctor will not eventually give you the two week course of antibiotic to get rid of the UTI, get another doctor. It will do you no harm, and your life style will be curtailed if you end up in hospital with sepsis which can easily kill. This is as serious as cancer and needs to be treated as such. It can kill. It can lead to kidney infection. Or dialysis. Or transplant. You get the idea, get a younger doctor if the older one does not try this approach. It took me over six months to recuperate from sepsis, called prolonged sepsis, which is common. My heart aches when I read that others have it as bad as I did, and wish you the best for a bright future. I am 78 and young in mind and body, many are much younger and already on this downhill spiral. Don't let anyone downplay your agony, you know your body. Vicki

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@clkurth

Appreciate this info. I don’t drink alcohol or coffee or any carbonated substances.

Do you take D -Mannose capsules or powder? Just curious what folks think works best?

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I've read that D-Mannose does not help

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