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4 UTIs since end of May 2020

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  • tangerine3
    replied
    I was not trying to say I am taking the probiotics for the Prevotelia bivia and Gardnerella vaginalis (bacterial vaginosis). The probiotics are for my stomach and started 4/23. I have not had any problems. I am waiting until Monday to take flagyl for other reasons. Glad the flagyl will give me some hope.

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  • ICNDonna
    replied
    There can also be side effects from over-the-counter remedies. I suggest starting them one at a time, with several days between additions, so if you do have any side effects, you'll know which one is the problem.

    I have taken Flagyl without problems. For me, it worked fairly quickly --- you might want to consider taking it sooner.

    Sending well wishes,
    Donna

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  • tangerine3
    replied
    well I had my Microgendx test results back and they did not find any other bacteria from my last UTI, I had another one 4/18 and sent them my urine. It came back with e coli just like all my other 10 test results, however they also found Prevotelia bivia and Gardnerella vaginalis (bacterial vaginosis), I have not had this before and don't have any symptoms, no odor itching or discharge and am not sexually active . . .. Not even sure what the symptoms are with those 2 things, although a little inflamed down there and a little burning. My dr. prescribed Flagyl I havent' taken it yet because my stomach is just not right from I don't know what maybe all the antibiotics I have taken over the past year. I have started on Garden of Life 40 bill, 16 strain probiotic and drinking marshmallow root tea and just started peppermint tea. I'll start the Flagyl next week. I am finding this odd.

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  • Sharon in AZ
    replied
    On your question about are there two kinds of E Coli...there are about 2000 different strains of E Coli. Most are harmless, and because they are completely gene-mapped, they are used in research. They are sort of the bacterial equivalent of laboratory white mice. My son is the director of the E Coli Databank at Yale. It has over two thousand strains of gene-mapped E Coli bacteria that he ships all over the world for research. There is your bit of trivia for the day LOL.

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  • tangerine3
    replied
    Did I miss something here? I received this answer in my email and brought me to this thread I was going to finish reading it but it is gone . ..I have an appt with PT for PFD on April 20. The FOSFOMYCIN seemed to work for the UTI . . . . and wanted to hear about the Hiprex because I might want to start taking it again and have been reading about the wand, thank you.


    HI there... I had very successful results with hiprex. one year of agony and trying every treatment and medicine under the sun and then was fine in two weeks - combining with pelvic massage with a pelva wand. I was warned by Dr Malone that it might sting a bit at first, and it did. nothing terrible and then

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  • AnnieBel
    replied



    There isn't anything controversial here about PFD --- we suggest being evaluated for PFD (pelvic floor dysfunction) by a physical therapist. PFD can be a significant part of IC pain in some IC patients. If anyone is looking for a physical therapist, if you scroll to the top of this page and click on the link to the front page, you will find a link to find specialists, which includes physical therapists.

    I'm glad you are doing well --- thank you for sharing.

    Donna
    Last edited by ICNDonna; 03-25-2021, 07:09 AM.

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  • ICNDonna
    replied
    I'm glad you are feeling better.


    Donna

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  • tangerine3
    replied
    Well it did help the first dose and then the next day I took just 1 pill of 100mg and also took one Trimethoprim to see if could get a jump on the infection and was in flared horribly almost all night.
    The next day I stopped taking everything even Bladder ease. Then yesterday I started Bladder Ease and some aloe vera pills and today it feels like I have nothing wrong with me . Anyway Telemed tomorrow with urogyno to discuss UTIs and possibly pickup the Monural/FOSFOMYCIN. I am also looking into MicroGendx. I will take fosfomycin depending of what the culture says again. And if another or chronic UTI comes again will want to try MicroGenDX. On another forum I have gotten some tips regarding Marshmallow root tea for IC upkeep and Monolaurin to help ward off UTIs. As always keeping fingers crossed.

    P.S. do you know how to change the signature down below, thanks

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  • ICNDonna
    replied
    I hope the pyridium helped.

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  • tangerine3
    replied
    oh yeah i have standing orders at home for culture, The Drs. office actually called me and told me they sent over some kind of one dose powder antibiotic I forgot what it is called . . .starts with an F I have never taken it before. Hopefully it will do the trick it won't be in until tomorrow. If bacteria wrong when culture is done, they will have to think of something else. I don't think it is a flare . . the hard part is now having to wait I would really like to do an instill but not supposed to if it is an active infection. I took 100mg of pyridium and it seems to be helping a little I won't know until I go. Another weird thing is Prydium works IF I have a UTI, if i take it and I don't have a UTI it will make me flare! but only seems like I can take one dose any more and it does flare.

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  • ICNDonna
    replied
    Are they doing cultures to be sure you have infections and not IC flares?

    Donna

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  • tangerine3
    replied
    I am on D-mannose about the only thing that does not cause a problem on top of a problem But obviously it is not working but taking it anyway. I had a terrible night I don't think the trimethoprim was the problem, I have been off it now for 3 days and what I'm feeling now is like another UTI. I have not self cathed in over 3 weeks so I just really believe that the onset of all the UTIs beginning in May 2020 they have never been cured i think it is still the same one! no antibiotics are helping. I am going to quest for another culture today.

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  • ICNDonna
    replied
    I don't do self instillations now, but I did for quite a while. I only had one infection when I first started doing them.

    You might want to try D-Mannose to help prevent infections --- I'm not positive how effective it is, but could be worth a try.

    Donna

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  • tangerine3
    replied
    AN UPDATE:

    Hi I have had IC since 2008 diagnosed with hydrodistension. I've had ups and downs, been in remission for years here and there and was finally comfortable with self cathing at home with 10,000 units of Heparin 1x a week and sometimes added to the instill 20ml %1 lidocaine and 3ml 8.4% sodium bicarbonate. So self cathing for years. Well as of May 2020 i started getting UTIs I have had oh probably 7 till now and have just gone the normal route of taking macrobid that would help at first then it would not help and then I think it actually made me flare horribly one time. I have tried bactrim and even had a couple of injections of Rosephin; I thought I was allergic to Penicillin but was able to take the Rosephin shot twice the 3rd time, for my most recent UTI a couple of weeks ago I got a rash but it only lasted about an hour. But the UTIs just came back. At this time I don't think I have a UTI what is weird when I have one my urine smells like ham (i know weird huh LOL) So at this time my urogyno has got me on Trimethoprim 100mg 2x day to try and ward off UTIs. I have been on it for 2 weeks now and I was feeling good but then i think it is upsetting my stomach and I started taking acidophilus but to no avail. Just want to let you know that the only thing that bugs my IC is when I get a UTI or sometimes just slight irritation if I am constipated and when the stool passes my bladders get irritated but does not last. But now the Trimethoprim is upsetting my stomach and making me either constipated or the opposite and just causing to many bowel/stomach problems which irritate my bladder now I have a constant burning down there but only at night during the day I am pretty much okay except rectum pressure. I was doing a test on my own and was wanting to find out if I could take the Trimethoprim for a month, that is what my Dr. suggested, and quit self cathing to see if that was what was causing my UTIs. So now I'm stuck. I have also tried Methanamine (hiprex) daily to ward off UTIs daily but I think it also irritated my IC but not sure because so many UTIs I didn't know what I had IC or UTI. Anyway I am going to stay of Trimethoprim for 2 weeks to see if that was what was really causing my stomach problems.

    When in remission I could eat whatever I wanted, I am now back on the diet although when my IC acts up it is usually muscle related (tension) or the UTIs.

    One thing is also I have switched catheters for years I used Cure Catheters
    https://curemedical.com/cure-catheters/cure-catheter/

    And then switched to a hydrophilic catheter that comes with a sterile water packet for lubricant
    https://www.vitalitymedical.com/rochester-hydrophilic-personal-i...

    But that did nothing.

    Just wanting some feedback to see what might help mostly with the UTIs. And does anyone else on this forum do instills to treat their IC?

    Thank you.

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  • ICNDonna
    replied
    Originally posted by Mothergoose View Post
    Hi I have not been on here forever. Sorry your having problems with UTI’S, I have had more than my share of them too, 4 since October 1st, but the 4 worst of my life, I had no idea they could get that bad.

    I never found Macrobid worked very well for me, but everyone is different. UTI’S are often from E. coli, Macrobid works for E. coli most of the time. Our urine samples should be cultured, and then tested for the right antibiotics to use for that bug.

    Hi Donna I am very pleased to see you are still on the forum. I assume like many of us you have been hibernating at home to avoid Covid, not insulted intended if you have different beliefs about Covid. I have been home pretty much since last March officially, but I had stopped going to stores, touching money, and using shopping carts the beginning of January.

    I have a story to tell, what has brought me back to IC network. I had been in pretty much full remission/or well controlled IC for years, to poof gone in a blink of an eye.

    I need to recover more, to have the energy to write my story down.
    Yes, I'm still around --- I felt very alone with IC until I found the I found the IC Network. As long as I am able I will be here. I'm also pretty much at home until this pandemic is controlled.

    I agree with the need for cultures for IC patients, especially with repeated infections. It can be hard to determine whether discomfort is from an infection or an IC flare.

    We just finished being self quarantined after being notified that I was exposed in my ophthalmologist's office during a visit to resolve a problem. The dot.com sales sites are doing very well by me.

    Would love to see your story --- if it's easier, you could post in segments.


    Donna

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