D mannose..Not Working.... and more..

Kidney and urinary tract
21

Thanks to those who commented here. I'm in a similar situation and am learning a lot from your posts. I'm 47, married with 4 kids. I get simple UTIs about once/twice a year, always e-coli, always easily treated. I have the doctor culture my urine in the lab, it usually says Macrobid or Bactrim are sensitive, so that has always done the trick. Up until now, that is.

3 weeks ago, I felt the start of a UTI (you get to know what they feel like, that's for sure!) Went to doctor, did the in-office urine test, they said "yep, tested positive for nitrites and leukocytes/blood." Put me on Bactrim while waiting for culture.The culture came back that Levaquin would be most sensitive. (Yikes, just read the warnings from you ladies about Fluoroquins, and I am so glad I found out before it did any damage!! Thank you so much for that!!)

Took Levaquin for 10 days. Symptoms gradually improved, by day 9 I was feeling great. Took it through the 10th day as directed, then stopped - and within 2 days all the UTI symptoms were back again! Doc called in 5 more days of higher dose (750) Levaquin. I'm on day 4, and it's not touching the UTI pain!

Today I had her re-culture the urine, no results yet. And asked her to switch me to another antibiotic that was also sensitive on the original culture (Macrobid.) I've been taking cranberry capsules & juice. Plus Pyridium and Cystex for pain/burning. 

But when she did the dipstick office urine test today, she said it was only positive for Leukocytes/blood - not for Nitrites anymore. She said maybe it's not even an infection after all? But I told her I know my own body, and I most definitely have UTI symptoms and am in a ton of pain. So she gave me Macrobid to try for the long holiday weekend. 

As you all know, UTI pain is miserable. But for me, there's an element of PTSD involved. In 2010 I had a mesh tvt midurethral sling for a prolapse/incontinence. Long story short, it eroded through my urethra & vagina, caused indescribably excruciating pain, and I had the sling removed 5 months later. I haven't had any urethral problems since thank goodness. But UTIs take me back to the horrific feeling of the mesh cutting through my urethra from the inside, and I am an absolute wreck.

I'm starting cranberry & D-mannose tablets today, thanks for that suggestion too!

Any thoughts on why an e-coli infection that had both leukocytes and nitrites would have not responded to the Levaquin that the culture said would help? Any other advice is most welcome. I can and have handled lots of types of pain in my life, but for me, urethral/bladder pain is the one kind I just can't deal with.

Thanks so much for your help and advice. 

22

Hi Janet,

I'm glad you saw the warnings about fluoroquinolones and decided to stop taking the levaquin before you felt any symptoms from it (muscle/joint/gut pain etc).  Since you've taken it for 10 days + you would be well advised never to take it or Cipro or one of the other FQs again.  Nor any NSAID or steroid as these can bring the symptoms on.  Go to Floxie Hope if you think you are getting any problems from taking it.

As for why the infection didn't respond to it - there's a lot in the media about antibiotc resistance so maybe it was that.  The dipstick test isn't definitive, so you would need another culture doing to get to the bottom of it, but I can't say as I just don't know.  I do know that you've had more than your share of problems recently so at least be thankful that getting floxed isn't added to them! 

23

Oh my gosh...I found my group! Today, I went to Urgent Care for a UTI. I am now on my 4th antibiotic in 1 1/2 months. I have a 46 year history of UTI's. I do best when I take 50 mg of Macrobid every night. However, a urologist told me 2 months ago that I should go off the Macrobid. Well, you can see how well that has worked for me. Thirty five years ago I was told I do not completely empty my bladder. I have had three cystoscopes and I remember a urologist many years ago saying saying my bladder had an unusual texture. Time for me to see a new urologist and get to the bottom of this. What I have read above about e-coli being embedded in the bladder makes sense. I have done it all: cotton panties, showers, clean and urinate before and after sex, made tea with urva usi, taken cranberry pills, D-Mannose, and Femdopolis. If another nurse or doctor says to wipe from front to back I will scream. I really haven't been helpful other than you are not alone. I am going to find a urologist who can help me and I suspect take 50 mg of Macrobid until the cows come home. Praying for relief, understanding, an a full and complete healing.

24

Being a guy I don't pretend to know alot about the subject. But in June I got a very bad UTI after surgery. I was on anti biotics at the time. They put me in the hospital and gave me a course of 3 antibiotics at the same time. It stops the infection from becoming resistant. It breaks down the wall the infection builds against the one at a time antibiotic treatment. It can fight one at a time. Not three at once. No idea if this helps but figured I would throw it out there. Good luck.

25

Thank you! I started on the Macrobid on Friday, and by Saturday, I felt really good - the UTI pain was nearly gone. It's been getting steadily better. Today had a urologist scan my bladder and do a dipstick test, everything looks good. He said that Macrobid must work better for my body, even though the culture said Levaquin would be best. He said I could have built up a resistance to Levaquin (had it after several mesh removal surgeries in the hospital.) I'm so glad you guys mentioned the Fluoroquinolone thing - I read the sites you suggested, and wow is that some scary stuff! You can bet I won't be using that family of antibiotics ever again!

26

You almost certainly have interstitial cystitis and probably hulners ulcers too.

27

Dear ladies,

I have the same problem-reoccurring uti caused by e.coli.

I'm 26 and have been having this problem the last 3.5 years. I have changed many hospitals and doctors trying to find the one who will be helpful..I tried many different antibiotics, short term and long term, immunoterapia, herbal therapy. It still coming back after 1.5-2 months. Urodynemics was normal, cystoscopy as well. I have been taking dmannose 500 mg pills one a day 2 pills, for 3 months,and nothing else with it since I am sick of antibiotics. The last week I started again feeling discomfort in my urethra and today, after 7 days, uti occurred again, announcing the start of the hell again.

Recently I also saw another products which supposedly brake the biofilm helping to get rid of the ecoli sitting in the bladder wall.

Has anyone ever tried any of those?

Also, what dose of dmannose is recommended during uti and when the pain and other symptoms are hopefully relieved?

I tried only pills but not the one that needs to be dissolved in water as I understood from previous comments.

Please help with your advice, I really want to get rid of it since we want to have a baby, but sofar it hasn't been possible to even think of.

Thanks in advance!

28

You can take a spoonfull of D-mannose powder every hour for around 3days, then gradually decrease it until you're having a spoonfull a day. You need to take it for around 3 months to cleanse yourself of the ecoli. Have you been checked for interstitial cystitis?

29

Hi Sophie,

Thank you for your reply.

Yes I have been checked for IC and it was positive.

Can you tell me is there any differencell between the different d mannose powder products in terms of quality?

A have tried only the pills.

Thanks

30

I don't think there is much difference, just buy pure D-mannose powder rather than mixed with Cranberry etc. With the powder, you can alter the dose dependant on risk factors eg. Prior to sex, before bed, first thing in the morning, can feel a uti coming on... You need to take it with less water, not more, to ensure the concentration is strong in your bladder, then hold your urine for a while before peeing. If you can, stop yourself peeing before you've finished emptying for as long as you can - this will allow the D-mannose to sit in your urethra for a little while too.

31

i know it sounds nuts, but i recommend testing for parasites. I know it sounds mental but my sister's urologist explained how the common threadworm has now been linked to a big portion of reoccurring UTI's in women. There are a few studies on the web that explains how/why. My sister had reoccuring infection which antibiotics did not touch- she got referred to a specialist who never even ran tests for parasires, she just told her to pick up a bottle of parasite meds from Boots & to see if it made a difference...IT DID! Turned out my Neice's school had a break out but my niece lost her letter 😂   After 3 weeks of £6 worming medication, her uti disappeared. Apparently, 40% of UK children under the age of 10 have/had pinworms! 

32

Hi Sophie Im new to this web . Im using Macrodantin 50mg once a day now for 5 months... since 2006 om constantly on antibiotics. Just want to know if i have to start with d mannose while using the antibiotics or after finishing it? Thanx HAN

33

Nicole,

I just read your blog about your UTI's from 8 months ago.  Hope you get this and it can be of some help.  I have suffered with bladder infections on and off all my adult life.  What worked from me for 10 years was having my Erethra enlarged.  I think that is all I need to say about that.

Deanna

34

nnj925, I have been reading with great interest all the replies to the question you originally asked 9 months ago, having discovered this site while looking for info on D-Mannose. I was diagnosed with interstitial cystitis about 2 yrs ago, and am always looking for helpful ways to deal with it. Until I was diagnosed, I dealt with the frequent UTI's and the embarrasing e.coli lectures from my GP.  ( AS you said--"Like we don't know how to wipe..."wink My GP actually threatened to put me on a low maintenance dose of ABs for the rest of  my life if I had ONE MORE UTI !!!  That was when I asked to see a urologist, who told me I wasn't actually having UTI's at all, but had ulcers in my bladder, and that was the pain I was feeling! His nurse also explained that the e coli had nothing to do with "wiping." They explained that people with this condition have urine that is overly acidic, which can be the result of stress or diet, and can be rectified by trying to reduce the amount of stress in your life and changing to a diet that is more alkyline.(There are charts available on the iternet to help with this, but in general, think  less meat/dairy, more fruits and vegs.)  There is also medicine available, but I chose not to take it. I've managed to get it under pretty good control with diet.  

35

So nnj925, I was finishing up another message to you and I guess I sent it accidently-- I mentioned the D-mannose----that I was interested in learning more about it. I read what some of the others had to say about it, but what I gathered from reading between the lines is that maybe it works for people who have a lot of regular bladder infections, but perhaps not for those with interstitial cystitis? You posted several times over the last few months and you said once you were tested for IC. Did that last nurse practioner test you again?  I hope so! I saw several different doctors, including my gynecologist, searching for the source of my incessant pain and burning that, no doubt many thought was in my head!

I also hope others will jump in here with their two cents on whether D-mannose is helpful for IC.  

36

Hi nnj925, Can you tell me where did you find the nurse practioner in DC specialized in Lyme disease? I have been having UTI's for the past year, almost once a month. I had a positive diagnostic for Lyme last year when the UTIs started. The doctors around here do not know any thing about Lyme. My infectious disease doctor says that the UTIs do not have anything to do with the Lyme, but I think he is wrong. The only thing that the doctors do is to put me in antibiotics.  Thanks

37

You may have interstitial cystitis. Insist on getting tested for it

38

What happens if I do have that? Is there a cure?

39

And also I've never had his problem before? Why do you think it's just started? I've been tested for STD an stuff so it can't be anything like that

40

No, sadly. But it often can be managed.