CHRONIC UTI AND KIDNEY INFECTION
Posted , 5 users are following.
Hello,
Are there any of you who are in this similar situation: since Jan 2012 to present. UTI’s, simple to now complicated, EColi, super-bug, ESBL producing, resistant to almost all antibiotics. Since Nov 5, 6 terrible UTI’s which is now diagnosed in my kidney. Each culture the same, wirseningcevertine. I have had all antibiotics imaginable, urological and gynological treatments to the newest, long term low antibiotics, long term high antibiotics, 2 PICC line placements, cystoscopues out the whazoo, all resulting back in full blown ESBL producing E-Coli superbug. I have a team of three docs who are amazing, family, infectious disease and urologist gynecologist. I am now going to insist on seeing a nephrologist. In the meantime, my life has been stalled almost to a stop. Within 5 days of completing a course it’s full blown again. I have tried holistic, natural, herbal you name it. Prayer is my saving grace.
Is there anyone else in same like circumstances?
0 likes, 11 replies
marilee43089 shelise54789
Posted
Shelise, I feel really badly for you. Since being on this forum, I have not read from anyone that has the ESBL.
Did I understand you correctly that your UTI's started in 2012 and have been ongoing to present? Did you take a lot of different antibiotics between 2012 and now? Did it just now turn to ESBL and previously was just ordinary E-coli?
When you are on the antibiotics now, do they help at all with the symptoms? If they do, wouldn't that mean they are sensitive to the ESBL bacteria?
It seems that women with recurring UTI's get sent for all the tests and they never show a problem so doctors do not know why the UTI's keep returning.
There have been numerous women on this forum that have the recurring UTI's, myself included. Mine also came back within a few days off the antibiotics.
Now I understand why the doctors are so concerned about prescribing antibiotics unnecessarily. They lead to antibiotic resistance and the super bugs.
Why do you think a nephrologist could help?
shelise54789 marilee43089
Posted
Yes since Jan 2012 I have had consistent UTI’s first monthly or EOM, then as I was on antibiotics for long term they started to return with vengeance. It has now shown as ESBL e-coli every time for last two years with a strong warning to follow up with infectious disease dr. For which I have since 2013. In my opinion it started at a uro office where I came in with UTI symptoms in 2011 (had a history of them but never that bad 1-2 yr) . The test strip only showed some response but rarely bacteria. After 6 months of being treated for IC (they said not UTI but IC) they finally decided to culture and send out test for which it was positive and resistant to many at that time. Now even the one that says it does/should work is not. I believe a nephrologist may be able to evaluate my kidneys to determine scar tissue, mild hydro issue and additional hump (normal) on kidney to see if the tissue is holding any infection and redepositing it. With a neurogenic bladder, an interstim was a great thing to have at one point. However it’s ineffective now and limits testing to scans, X-rays, ultrasounds. If you have UTI’s return soon after course is finished, I would encourage you to insist they do additional testing, find a good ID doc who will work and discuss areas with your docs. CDiff also came as a bonus last year for the various antibiotics I had to take and was hospitalized with that and a UTI, which returned within a week. I am unfortunately one of those women you read about. I have not seen others with my battle. My advise is be a active part of your healing. Don’t be placated with wait and see attitudes. Be a bit pushy but respectful and kind. Ask lots of questions, research on your own and discuss with dr. When I call in I let them know I am coming to get tests but also to review information and results. That way they give me more than 15-20 minutes. I hope this helps.
How long have you suffered with UTI’s and has it ever traveled to your kidneys? What have you found helpful?
marilee43089 shelise54789
Posted
Yours is a complex case. It's sounds like you are in the USA? I am.
What were your initial symptoms back in 2011? I can understand why maybe a culture wouldn't be done if the test strip was just 'trace', but if you had significant symptoms, I would expect a culture to be done. I do know from my own personal experience that a test strip and culture can be negative with a UTI if the urine is real diluted. However, when one has significant UTI symptoms, the test strip usually shows a +2 or better. At least mine did.
Have you always had a neurogenic bladder? Do you have MS or some ailment that makes your prone to that? I am not familiar with an interstim.
It seems that you have done all the right things, especially with doing your research and taking control of your health. I did too. When I got my first UTI back in October 2016, I knew nothing about them or antibiotics. I researched extensively. I don't understand why more people don't do that.
You're fortunate that you can ask doctors to give you more than the standard 15-20 minutes so that you can discuss things. Mine won't do that. Most insurance only pays them a pittance for the standand time.
I got my UTI's stopped at least temporarily by going on low dose antibiotics for about 3.5 months. Mine was always Ecoli but not esbl. Now I'm asymptomatic and off antibotics for over 5 months but I have a bacteria in my cutures (enterococcus) but not enough to show infection. Research has found that many women without symptoms have bacteria in their cultures. It's not common to get a culture w/o symptoms, so most people don't know if they have bacteria or not.
I have requisitions from my doctor to get a culture whenever I feel I need one.
I also worked with several different doctors, including an Infectious Disease doctor.
I've had the Uro CT-Scan, Ultrasounds, etc. and no problems found. UTI has not traveled to my Kidney yet as far as I know. I never had any back pain with my UTI's. Just some burning and frequency. I always got on antibiotics asap. My infections never got a chance to get worse.
shelise54789 marilee43089
Posted
I have a great urologist/gyno and she has done everything possible. The thought was: post-menopausal woman, get that area healthy and it would be resolved. But it has not.
Have you experienced GERD or gastric issues from antibiotics? I have and it can be significant at times now.
It is good to hear you are infection free! That is very encouraging as well.
I feel like I could write a booklet on do’s and dont’s if UTI’s and Kidney infections.
I am in USA. My ID doc has researched with me a couple of times clinical trials, treatments, etc. All three dr’s are amazing. I did switch uro at urging of ID doc bcs he felt they were not being proactive. A female uro has been a great experience, even though there is not the resolution we all wanted.
Marilee, I don’t know if you have higher acidic content, but one thing uro had me do to get mine in balance was alka seltzer gold once a day. People with IC swear by it and it reduces the flare-ups. I’ve been told I have it to I don’t. I think my bladder is responding to infection more than to IC.
Dietary for UTI makes no difference.
When you ask for a culture, do they do a resistance/susceptibility panel as well?
shelise54789
Posted
It shot out of me. The sight though I swore😊
marilee43089 shelise54789
Posted
Interesting about the various symptoms women have. My very
first UTI in October, 2016, I had dark urine and burning. I knew
right away I had a problem, so went to the walk-in place immediatley and they gave me a script for Bactrim. I had been so healthy prior that I didn’t even have a primary care doctor. I had to pick one out of the yellow pages. I then promptly started googling UTI’s and learned a lot. Went out and bought the dipsticks and became obsessive about checking the urine.
After that first UTI, as soon as I’d finish a dose of antibiotics, the
dipsticks would show positive. I also had blood positive on the
dipstick. What was interesting about symptoms though, was that only twice did I have burning. Maybe I didn’t allow the UTI to
progress far enough to get burning. My urine with all the uti’s
after the first one was light, concentrated and cloudy. I assume
the color was due to having ‘pus’ (for lack of a better term) in it.
I don’t know what is involved in the IC treatments, but my first
urologist drew urine with a catheter and I was in agony after
that. It just make the uti much worse. That’s the last time I’d
have that done unless absolutely necessary.
As far a ‘twinges’ in the urethra, I have odd feelings there as
well that wax and wane. My obgyn thinks it’s due to my vaginal atrophy. I’m post menopausal. My twinges aren’t necessarily
associated with urination.
Are you on estrogen cream? I am and I think that was part of my
success. Originally I was inserting it with the plunger, but my
most recent urologist told me to use the fingertip method. I put
some inside, but also outside.
No, I have not had any stomach or intestinal problems on antibiotics. Thank God. I started taking probiotics right away.
The only antibiotic that made me sick was Bactrim. I was on it
three times, and the side effects got worse with each time. The
only good thing about it was that I peeled off the weight because
it killed my appetite.
That’s super you have an great ID doc that has interest in your
case. Are you aware of the uti vaccine that is showing promise?
They’ve done studies on it in the UK. It won’t be on the market
here for a while though.
When you ask about acidic content, are you talking vagina or
urine? The vagina needs to be acidic. There is controversy about whether the urine needs to be acidic or alkaline to kill
bacteria. There have been studies on both. I vote for acidic.
I haven’t tested my urine for a while. (Frankly, I don’t want to
know, lol). It’s usually a 6. For a while, the urologist had me
try Methenamine. That’s supposed to get the urine acidic and
kill off bacteria. I took that with vitamin c to get the urine acidic, but I could never get it down to a 5. The Methenamine kept my
uti at low grade for about 10 days post abx, but then the uti was
back strong.
True that diet doesn’t make a difference for me either. However, I started force drinking a lot of water after getting these UTI’s and I
cut out coffee and caffeine. I’ve been thinking of starting back.
When I had cultures done, when it was more than 100,000cfu
they would do the susceptibility panel. I had cultures done while
on antibiotics, and those were mostly ‘no growth’. I had other
cultures down that were like 10,000-15,000cfu and they would consider them normal flora and not do the susceptibility panel. A couple times they were wrong about that. My urine was too diluted. Now since I’ve been asymptomatic, my cultures are showing the Enterococcus <100,000 and the labs are doing the susceptibility panel. I can only assume that is because Enterococcus is a dangerous bacteria or because they feel
the findings are legitimate and not normal genital flora.
leah24948 marilee43089
Posted
hello
I'm new here ! was reading your post and wanted to see how things are for you so many years later . I'm suffering from UTI and third antibiotic . I need help
marilee43089 shelise54789
Posted
I apologize for the way my post got paginated. I typed it in a file before pasting it here. This site is hard to use. The page keeps bouncing around. That's why I like to type my responses in a file first in case I lose what I've typed. It would be nice to have an edit function.
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shelise54789 marilee43089
Posted
Very interesting info thank you Marilee. You are right that it is a bad bug that needs to be monitored. I should of went to ID doc much sooner but it was never suggested. It feels like for me if it’s not active there is no issue as far as docs are concerned. But, it’s not active because of antibiotics,! I just had this conversation with my doctor and said, wait within 5 days it will be fully involved after the corse. He told me I was right. We do know our bodies best.
I have never heard of a UTI vaccine. I will research it today. I did see there are two new antibiotics and a booster med that has been approved by FDA but I don’t thinks it’s been released. I’m going to ask doc about it next week. Yes using estrace for years but atrophy worsened so I tried the Mona Lisa procedure which is approved but not recognized by insurance yet. Pricey and painful but it did bring blood flow to female area.
You know one thing I hope I never hear again from docs? “Did you wipe from front to back?” 🙄 Really? I am how old? I could deck them. I just close my eyes and visualize I do so I remain calm, haha.
It’s been really encouraging to read your info. Thank you for your kindness and keep on fighting for wellness!
marilee43089 shelise54789
Posted
LOL, yeah on the wiping front to back. Does anyone not do that?
I also get tired of the hype on D-Mannose.
Aside from the culture, I get a microscopic look. If the WBC is within normal, than that means no infection regardless of how many bacteria in the culture. At least this is what my Infectious Disease doc goes by. Other docs are different.
frankie94663 shelise54789
Posted