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UTI's

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  • corky60
    corky60 Member Posts: 453
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    Hi jaycee, yes that is the bacteria that showed up in the culture in November and a few days ago and I assume it was present in the infection in January.  After having taken cephalexin in November and January the doctor switched it to ten days of Cipro which I am currently taking.  If I keep getting this same infection then I will have to wonder if Klebsiella is resistant to these antibiotics.  I am seeing a good urologist next month and will ask her about all this.

    Once you take Linezolid do you have to take it if there is a recurrence or can you use cephalexin or Cipro?  I am getting tired of all of this as you may imagine.  I asked my family for name brand Cipro and she said that it's not in her formulary.  The med has been around a long time and she's not sure if any pharmacy stocks the name brand any longer.

    I just have to bite my tongue when the dr. asks me if I wipe from front to back.  I am in my 60's and know how to use the bathroom! SadGood grief!

  • jaycee49
    jaycee49 Member Posts: 1,264
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    Corky, sorry, I got the bacteria and antibiotic combos mixed up. I had two bacteria at the same time last Aug. One was klebsiella-pneumoniae and I took Cipro for that. I also had one called enterococcus faecalist at the same time and that is the one I had to take Linezolid for. I got the reports out and checked and also checked my pharmacy records. The sensitivity data that should be run with the culture should tell the doctor and you (I always get copies) what antibiotics the bacteria is sensitive to. My occurrence of k-p may be sensitive to something yours is not and vice versa. Usually the same but not always. One of them may have built up a resistance to an antibiotic. Each individual occurrence of bacteria needs to be checked for sensitivity to antibiotics. Can you get in to your urologist sooner? She will be more knowledgeable about all of this. Your PCP/urgent care seem to be shooting from the hip.

  • 2FUN
    2FUN Member Posts: 789
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    first uti in 3 months. Can't decide if I should be happy I made it to 3 months, or mad that I got it!

  • corky60
    corky60 Member Posts: 453
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    2FUN, what was your secret to going three months?  Did you do anything differently?

    My UTIs are occurring every 3.5 weeks.  I want to travel this summer but am concerned that I will get sick while I am away from home.

  • corky60
    corky60 Member Posts: 453
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    After 3 UTIs in 37 days I finally saw my urologist.  She prescribed Methenamine Hippurate 1mg twice per day.  She said that it would acidify the urine.  She said that if that doesn't work she recommends the Mona Lisa Touch.  It is $2500 out of pocket for three treatments then a $900 annual treatment.  I need to talk to her more about how it would prevent UTIs.  She said that there is a paper coming out soon on the topic.  She is the only doctor in this area who treats with the Mona Lisa Touch.

  • jaycee49
    jaycee49 Member Posts: 1,264
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    Corky, I've gone three months, too. I use some kind of vaginal moisturizer every night. It's starting not to work, now. I get sore and burning late in the day. By what you said, I assume the Mona Lisa Touch is not covered by insurance. I'd actually pay that if it really worked. I haven't seen any web sites where patients give both positive and negative comments. Is everyone thrilled? There is a doctor about 37 miles from me (in another state) that does the treatment. I am a natural skeptic and will speak to my gyn when I see her. My old one retired and I will be seeing a new one soon. I guess it will be good to get a new viewpoint. I will also press my new MO next time (next week). I think if a doctor prescribes a med (like AIs), they should feel some responsibility to at least discuss side effects. Wasn't there someone on this thread that said she was going to get MLT, katcar? I wonder if she did and if she'd tell us how it worked.

  • jaycee49
    jaycee49 Member Posts: 1,264
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    https://www.realself.com/monalisa-touch

    This site has good and bad reviews and a forum. I'm even more skeptical now.

  • 2FUN
    2FUN Member Posts: 789
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    corky, I think the methamine HPP is a great thing. I broke out in hives when taking it. I am alergic to everything!

    The drug binds to the acid in the urine and converts to formaldehyde. Thus sterilizing the urinary tract, keeping bacteria from growing. I hope it works for you!

  • 2FUN
    2FUN Member Posts: 789
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    corky I have no secret to the lenght if time between infections.

  • katcar0001
    katcar0001 Member Posts: 321
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    Corky - I am so sorry to hear you are still having repeated UTIs. I did take methenamine hippurate tablets (Hiprex) when I was in NZ (you can buy it over-the-counter), and it did nothing for me. My story below in response to Jaycee's question. I don't know if will be of any help in your case, but if there is any remote chance it will help, here it is:

    I am just back home in Mexico after a long trip to NZ with my partner and then to SF, so I have not gotten the MLT. Before I left for NZ, I was looking into DIVA as it seemed to have better results for the vaginal atrophy issues. I continue to use the Aci-Gel and Premeno Duo, which have worked wonders for my dryness and soreness problems. I use one or the other only twice a week now. However, most of the time I was in NZ, I was still having some bladder discomfort and peeing frequently which I attributed to maybe having interstitial cystitis or an embedded UTI, which is why I tried the Hiprex.

    Well... here is the sordid tale... I was itching a lot down there, and then I noticed I had a rash below my genital area and a bit on my inner thighs. Turns out I got "jock itch", maybe from my partner who gets it every now and then. I have never had this! Yeast infections, yes, but with very different symptoms. I think being on so many antibiotics let the thing grow out of control. Anyway, I started treating it topically with Canesten cream and Diflucan pills in NZ and continued when I returned to SF. And guess what? Absolutely no sign of any bladder problems, no frequent urge to go, no weird smelling urine. I must have had a fungal UTI, which is rare but does happen. I have been completely pain free now for about three weeks. I feel normal down there and am ecstatic... now if only I could sleep!

    Second, I changed oncs again as I really felt I needed a woman on at a major NCCN comprehensive cancer center who could understand my issues. She is awesome! Dr. Majure. She spent over 2 hours with me, and we went through my entire history. She prescribed Estring and said it is backed by studies from ASCO and is safe for me to use. Also, we changed my AI to Aromasin as she thought Arimidex might be contributing to my UTIs. But my bladder issue cleared up before I made that switch. I started Aromasin not quite 2 weeks ago, and it gave me insane insomina, so I just switched back to Arimidex today. I hope I can sleep again. I have not felt the need to use the Estring yet. I suppose I might need it to be sexually active, but that is not happening right now due to other reasons. If I start using it, I will report back.

  • corky60
    corky60 Member Posts: 453
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    I was interested to read that Aromasin gave you insane insomnia.  It did the same with me and has never stopped, even when I stopped taking Aromasin.  

    I am not crazy about taking Methenamine.  I still get bladder/pubis pain but so far no infection.  Am taking Diflucan due to the awful, awful yeast infection that all the antibiotics caused.

  • katcar0001
    katcar0001 Member Posts: 321
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    Ah, that's right Corky. I had forgotten you were taking Diflucan. I am sorry you are also struggling with insomnia. I am hoping that since I was on Aromasin less than 2 weeks, that this horrible episode will subside. I had trouble on Tamoxifen and Arimidex too, but nothing this bad--night after night of not sleeping even though I am exhausted. I think it might be the steroid bit of Aromasin; I always get amped up on steroids.

    Here is a site you may find helpful: https://liveutifree.com/chronic-urinary-tract-infe... . She is the one who led me down the path of seeking help for chronic UTIs, and I am just fortunate that so far, Diflucan has solved my problem. Treating a chronic or embedded UTI is no easy task--months of very specific antibiotic treatment, but I was prepared to do it for relief from the relentless pain.

  • jaycee49
    jaycee49 Member Posts: 1,264
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    Here we go again. Symptoms started last week. By Friday, bad enough to do something about but it was ... Friday. This AM I call gyn (no answer, how does that happen at 9:15?) and urologist. They always let me drop off a sample with no appt. I still have to talk to a nurse and give symptoms. Then they do test strip. The one I did at home was positive for nitrites and leukocytes. So was theirs. NP wrote script for Cipro. I had her change it to Amoxicillin. That's the only one I can take with minimal gastro SE. Culture will be back Thurs. Too bad I see MO on Wed.

    Symptoms kind of weird like last ones in Dec. Burning pain all over uro-vaginal area, especially where I sit and I sit a lot. The burning pain goes down the back of my legs. No burning with urination. No frequency. Some urgency. I guess I'm writing this to get the symptoms straight in my mind so I can tell ??? PCP? Brand new resident. Gyn with no one answering the phone. Uro where it took me two hours to drop off a urine sample. I am really disappointed that the solution I thought I had is defunct. So deflating. I will continue with nightly vaginal moisturizers. It gave me four months. I have to try and be satisfied with that.

    katcar, I read that article. Very good. I tried to do the "quiz" at the end to get more info but I was on my phone and it didn't work perfectly. Some questions were cut off at the top. The box for email went away after some letters. I'm going to try again on my computer. Don't you think whoever that person is is selling something?

  • 2FUN
    2FUN Member Posts: 789
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    jaycee, sorry you are back on the UTI roller coaster. Glad you changed meds. Cipro can cause tendon rupture. I had bilateral achilles tendon ruptures 6 months post taking Cipro

  • dtad
    dtad Member Posts: 771
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    Hi everyone...just FYI for those interested. I just got over a UTI without taking an antibiotic. I hate them, especially the ones prescribed for UTIs. I took D Mannose for 5 days and all symptoms subsided. Hope this helps.

  • jaycee49
    jaycee49 Member Posts: 1,264
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    2FUN, Cipro made me feel horrible last time. I'd like to avoid it if possible. I'll be interested in this culture. My symptoms have already started to fade.

    dtad, does D Mannose have any cranberry component? Anything related to cranberry irritates my gastritis. I think I have some but never took any.

    katcar, I did the quiz and read some more from the article on my computer. Works much better. I gave them my email address and still haven't received anything from them. Surprising. I thought I would get bombarded. They list three private labs that do sophisticated testing not available from our normal labs. I looked at the info from the first lab listed. To test a sample, it costs $750-1000. Not covered by insurance. People always find specialty niches to make money. This could be useful but, for me, cost prohibitive. You also need a doctor to interpret the results who understands what they do. They say insurance may pay some but you have to file yourself. You send them a sample yourself which, of course, must be kept cold. Sounds a little complicated but doable. I am going to look at the other two labs today. Still interesting stuff unless it is completely bogus which you would never know. I guess I'll ask my uro.

  • jaycee49
    jaycee49 Member Posts: 1,264
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    The culture is positive for klebsiella pneumoniae (>100,000 CFU). It is resistant to Amoxicillin but susceptible to Cipro. I got some of that out. This is so annoying. Back to uro's NP, I guess. One time a while ago, uro was talking about something that is infused into the bladder and held there for a few minutes. Maybe I'll ask about that. Anyone heard of that?

  • 2FUN
    2FUN Member Posts: 789
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    Another antibiotic that works well against klibselia is fosfomyosin

  • corky60
    corky60 Member Posts: 453
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    Jaycee, have you tried Methenamine Hippurate?  You start it after the infection has cleared up.  I am taking 1 g twice per day and haven't had an infection since starting it, a welcome development after having had three UTIs in 37 days.  I realize that I can't take it forever but it is giving me a vacation from UTIs.  I don't know if it would aggravate your gastritis or not.

    As for D-Mannose, it doesn't say anywhere on the bottle about cranberries.  But further research reveals that it is derived from cranberries.  It doesn't acidify but rather attracts any bacteria that might be floating around in the urine and helps them to flush away.  In theory, anyway.

  • jaycee49
    jaycee49 Member Posts: 1,264
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    Thanks for those ideas, corky. I will be bouncing them off a few docs soon. With all the other stuff I take, it's hard to figure out what to do.

  • 2FUN
    2FUN Member Posts: 789
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    if you can take the methamine HPP I think it is a good option. I am alergic to it, so it did not work for me. From what I can tell from my research, the d mannose is most sensitive to e.choli

  • jaycee49
    jaycee49 Member Posts: 1,264
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    I worry about the side effects of both meth HPP and d mannose. I searched the house, cabinets and closets where I have been known to store drugs, and found a bottle of d mannose. It is not expired. I could try taking it while still taking Cipro or wait until after. The meth HPP needs a script so I may wait on that. It takes me forever to decide about these things.

  • katcar0001
    katcar0001 Member Posts: 321
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    Hi Jaycee -- I have been away and just saw your notes and questions. I am really, really sorry you are dealing with this again. I have been all clear since taking Diflucan, and I did go on Estring. Everything feels completely normal down there now. I no longer have to push like crazy to get the urine out. I think the urine retention (caused by atrophy) was another thing really contributing to my UTIs.

    As far as the Live UTI Free site, I found them very helpful. They never tried to sell me something, but they did answer my questions directly. I was going to contact the nurse practitioner who treats embedded UTIs in D.C. I am sure she is not cheap, but I was desperate, and I had a doctor here in Mexico who was willing to work with her and treat me with long term antibiotics. Thank goodness I did not need that. While I did have a bacterial infection early on that cleared up with antibiotics, the persistent problems were caused by vaginal atrophy and the yeast/fungus.

    I second Corky's suggestion to try the Methenamine Hippurate. I wish I could suggest something else. And I know using something like Estring or Vagifem is scary. It does worry me. Premeno Duo and Aci-gel did a lot for me, but were not really addressing the atrophy. I decided to go for QOL and the hope that I may one day be able to have sexual intercourse again ;-). I could not go through that pain and misery again and going to the bathroom multiple times a night (now down to one or two, which is miraculous). I may consider Diva when my budget will allow for it. I would certainly feel more comfortable mentally with a non-hormonal solution.

    Corky, I am sleeping much, much better now after going back on Arimidex. If I have problems, I take a little Remeron. I hope you are sleeping better.

  • jaycee49
    jaycee49 Member Posts: 1,264
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    katcar, I have not had one doctor (gyn, MO uro, PCP) say it would be ok for me to use any kind of estrogen. I think estrogen in the form of estring is what is helping you. The Diflucan confuses me. Have you had a positive urine culture that showed yeast/fungus? Could it have been vaginal yeast that responded to the Diflucan? My problem is that I have the same symptoms from UTIs, VB, and vaginal yeast. I did have retention in the past causing UTIs but that seems to not be a problem now.

    I haven't had a chance to look at the LiveUTIFree site again yet. Long term antibiotics would not be an option for me. I can hardly stand taking them for 7-10 days. That site never did send me anything by email which they claimed they would. Still surprised.

    With the vaginal moisturizers I'm using every night now, I only get up to pee about 2-3 times. It used to be 4-5. I have several vaginal moisturizers that work as well as Premenu Duo and are much cheaper. I try to use something with some acid every other night. The Aci-gel I haven't tried. I use Remeron, too, for sleep.

    Thanks for your detailed response. I really appreciate it.

  • dtad
    dtad Member Posts: 771
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    jaycee...so sorry you are suffering. I know how horrible it can be. IMO wait until you are done with the Cipro before you take the D Mannose. However I would try it at the first sign of another UTI and try to avoid the antibiotics. Good luck and keep us posted.

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
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    I haven't had any UTIs lately. Cross your fingers. They are miserable. I do have what appears to be jock itch on my thighs. My bits are sore so maybe there too. I've been having night sweats a lot and it's not even summer!

    I am no longer on any AIs or tamox. Didn't work. I did try the estring in the beginning it seemed to help but as I'm newly divorced, no need.

    My ob does the Mona Lisa touch. I haven't seen her in awhile as I get scanned every three months so really no need for a pap.

    I did have a round or two of the Mona Lisa in the very beginning. I was her Guinea pig. Not sure why it's not covered by ins. Much better than antibiotics. Maybe I need to investigate it again.

    Good luck.

  • jaycee49
    jaycee49 Member Posts: 1,264
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    I hate Cipro. Every time I take it, I say I'll never take it again. But here I am. I took two 250 mg a day Wed and Thurs and one this AM. I have some 500 mg which I will start tonight. I'll only get sicker but my sister and her DH are coming to stay next Thurs. and I don't want to be sick for that. I'll try to take several days of the 500 mg and have a few days to get over the side effects. Hoping this will work out. On the culture report, there was this long list of antibiotics that my infection is susceptible to, a bunch I never heard of. Why do we always end up with the same ones? What is wrong with the others?

    dtad, I thought the d mannose was preventative and you take it every day. That was my plan after the Cipro but waiting until my house guests leave.

    Zills, I thought that Faslodex had the same action as Tamoxifen, suppressing estrogen. Would that not cause your night sweats and maybe the itch is from dryness?

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
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    Not on faslodex anymore.

    Cipro is the last cheap antibiotic I can take. I used to do cranberry pills, no pop and watch sugar. Worked for a long time.

    Hope you're better by the time your company arrives.

  • dtad
    dtad Member Posts: 771
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    Hi guys...I hate Cipro or for that matter all the appropriate antibiotics for UTIs. I try to avoid them at all costs! I take D Mannose 3 -4 times/day when I have a UTI for about 5 days. I take it once/day for maintenance. Hope this helps. They are miserable!

  • katcar0001
    katcar0001 Member Posts: 321
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    Jaycee, My oncs (I have 3) all give me different answers about the Estring. But since my latest onc gets her information from the entire group of oncs at UCSF, including Hope Rugo and Laura Esserman, and they have all agreed that Estring is okay, then I am trying to trust that. It does run counter-intuitive, though, I agree with that.

    I did not have a yeast culture. I had obvious jock itch on my inner thighs. I have to say also that my urine smelled very strange. That and the pain went away after taking Diflucan. I just did a round of antibiotics for another issue, and a bit of the discomfort is back, and I do have a bit of cottage cheese (sorry for TMI). So, I am back on Canestan cream and hope I do not have to take Diflucan again.

    I cannot recall if you have tried Hiprex or not. I still have some Hiprex left--about 12 pills. If you want to try it, I would be willing to ship it to you. You can also guy it online.