I have been suffering for a year now with UTI's....my bladder always feels like I have a UTI even when I come up negative...I take DMannose EVERY DAY and YES my infection is always Ecoli...the only antibiotic that seems to work is Levaquin...Cipro did nothing even though the strain was sensitive to it...same thing with macrobid...I also take Fem Dolpholis every day and oil of oregano pills...and calcium and magnesium....NOTHING seems to work..I wash and my husband does before and after sex...wipe front to back...all the usual I drink 50 oz of water a day..I have NO CAFFINE, NO SODA...nothing but water or seltzer water...
Any suggestions???
Nicole
I Should also add..that I have been having recurring Yeast Infections as well...and yes, when I take antibiotics for the UTI I take a probiotic as well...does nothing...I am on Diflucan once a week now...I am 47 years old..and my hormones were checked..they are normal.
Has your GP suggested anything such as a bladder scan or urodynamics to see if all is well with your bladder etc, it might be worth asking about more specific tests like that. I have suffered with UTI's now for over 3yrs and at the moment I'm on antibiotics for 6mths an have to self catheterise but my problem they think is due to urine retention due to having a TVT done back in 2010. I wished I'd never had it done now as I may have to do this for the rest of my life an can't bare the thought! I wish you good luck and hope you can get something done about it as I know and understand how you feel.
Yes I had a cystoscopy done everything looked "normal".....I WILL NOT do urodynamics...there is no purpose to that..I already know that I do not empty my bladder fully...no point in stretching my bladder to the limit and then trying to pee and stop etc..(urodynamics) I know people that have had permanent bladder damage and pain following that. I recently just saw a Nurse Practioner in DC that specializes in Lyme disease (I do not have that) Interstitial Cystitis and recurrent UTI...she had special in depth urinalysis done and it came back with 61% Ecoli..meanwhile the day prior I tested "Negative" at my local ER....so I think the Ecoli is just deeply inbedded in the wall of my bladder...and these antibiotics just suppress it and after they end it grows again....I had even done (over the summer) a stint of 50 mg of macrobid for 3 months...I got an infection a few months after it was done....so I am at a loss. I do not want to be on antibiotics but natural things are clearly not working for me.
Hi Nicole, I searched for D-Mannose and e.coli as I remembered reading about how D-mannose actually works. The site I read explains it all very well and says this in the last para: "The unique adaptability of most uropathogens - a result of natural selection for the challenging environment they live in - makes them difficult to get rid of, once they 'get a grip'. Unfortunately, not even D-Mannose can immediately rid the bladder of embedded bio-film-protected bacteria. But an extended course of high quality bio-active D-Mannose treatment over perhaps three months can reduce these colonies to the point where they can no longer cause problems. In most cases antibiotics will not achieve this effect, leaving no allopathic answer to the problem, apart from burning off the lining of the bladder with chemicals or laser treatment".
Try and read the page yourself (I can't give the link here but you should find it ok). It may be the way you take the D-mannose is wrong - I think they suggest an emergency dose for some days then a maintenance dose.
You say only levaquin seems to work, which means you've taken at least one course of it. Please don't take it again (or Cipro or any of the other fluroquinolones). The toxicity level builds up the more you take so you may be already up to your limit and one more FQ tablet might possibly be enough to tip you over into the world of floxie-pain. Search for that as well, and you'll see what I mean!
Good luck!
Hi Nicole, I agree with the last comment. I've had exactly the same for 8 months. Been on daily AB for 3 months. Started taking dmannose - I took a lot in first 3 weeks. I took a heaped teaspoon every 3 hours even at night - you have to do this otherwise you'll never get control. The first two dosages should only have an hour in between. I set my alarm for 1am and 4am. Take with 200ml. I did this for 2weeks then reduced to one in the night. I'm feeling almost normal and I've been very sick and not able to be away from a toilet for months. You'll know when you feel better but I pee into a jug every time I go now so I can see how much I'm holding and I'm up to 200. I was 80. My thoughts are that as we don't manage to fill the bladder we don't manage to reach the Ecoli. Try this and let us all know how you are in 3 weeks.
Suzy....I definitely was not taking enough DMannose...I take one teaspoon each morning in about 12 oz of water...I drink that over the period of an hour or more...that was it... Today I did that..then I took another teaspoon in 12 oz of water at lunch time and now I am going to take it again during the evening and then again through the night.... I don't think my bladder can hold more than 4-7 oz....I am in severe pain if I do...even when I do not have an actual infection. Do you thank that is enough d-mannose now?
No I don't think you're taking enough. You take the heaped teaspoon in 200ml and drink it all straight away. Repeat in a hour. As you have been as sick as I have repeat every 2 hours for next 3/4 dosages then go to every 3 hours. Don't forget a dosage and take in the night. I never thought I'd get better but I have. I stopped taking ABs and started doing this and I'm better, you never think you will get better, but you will if it's ecoli.
Ps my cultures came back negative after 3 months but I still def had an infection.
Not sure...I saw a specilist in DC 4 weeks ago...she is a nurse practioner that specializes in Tick Born diseases/ Interstitial Cystitis and Recurrent UTI....she had ordered TONS of specialized tests for me...1 in particular from a lab called Pathogenius..they do this amazing IN DEPTH specialized testing on your urine...(she also had vaginial and nasal done on me as well)...so check this out..on January 24h I went to the ER feeling like I had a UTI..they said it was negative. That VERY SAME DAY I shipped my urine out to Pathogenius....it came back with 61% Ecoli!!!!!!! The hospital here even grew my urine over 24-48 hours...and still nothing they said it was CLEAN!!!! It wasn't! Anyway I wasn't able to follow up with her until yesterday...so she is putting me on Nitrofurdantin?>>spelling..its like macrobid but 4 times a day...I didn't want an antibiotic but I have never tried this one and right now we need to clear this up so she can treat the even bigger issue they found...A Mycoplasma...a bacteria..that she feels is/has contributing to breaking down my bladder lining..making it easier for the ecoli to constantly stay in there (Im not saying it the same way she did) but yea....I don't feel a difference with upping the D mannose yet but I did get diahreah ....and I think it was from the increase of that. 
That is also another reason why I need to get this controlled with an antibiotic before it hits my kidneys.... I guess 1 teaspoon would have been good for maintenance..but not while I have an infection..and obviously my infection has NEVER really gone away b/c each time the REGULAR labs here check it ...they say its clean when CLEARLY I now know it was not.
It sounds like your lab did a good job, and it also confirms what I read on the D-Mannose website I looked at - that the bugs get nice and comfy in your bladder lining and are difficult to shift. Nitrofurantoin is a common antibiotic for this type of infection and it will clear up your symptons, but probably only temporarily again. I would recommend you do the D-Mannose for three months as well. Did you find the website? Read it and see what you think. Please remember not to let them say it's not working so we'll give you Levo again (or Cipro). You may be in real danger of being floxed if you take any more - check out a site called floxie hope if you're not sure what I mean. Hope it goes away this time, M x
thanks for telling me about Floxie hope but I could not find any where on that site where it tells you what that is??? What are the signs symptoms..etc.
My apologies, Nicole, I often recommend the site but I forget what people see when they go there! It's for people who realise they have been 'floxed' (taken too many Cipro or Levo) because they have a collection of symptoms that can be muscle/joint pains, head pains, stomach problems, feeling dizzy or nauseous, tingling skin, eye problems - the list is quite long as the drug afects every part of you. Not everyone gets it, especially the first time they take them, but the toxin stays in your system and eventually, when you take enough Cipro or Levo, BANG - you're hit with a wid range of symptoms. I can tell that you haven't been affected because you ask me what the symptoms are - if you'd been floxed you would know!
The site is managed by Lisa who was floxed herself some years ago, and she realised not many people knew about it. She's gathered a huge amount of information in one place right there on her site. If you go there and look at the toolbar at the top you'll see 'recovery stories', hover your cursor over that and a dropdown box appears listing all the stories - Lisa's is at the top. Click on that to read all about her and her symptoms.
If it worries you, don't be scared but just make sure no doctor ever gives you Levo (or Cipro or any other fluoroquinolone antibiotic) in the future. You're quite safe with other antibiotics - it's just this particular group. Doctor's love them because they cure anything by killing it; our bodies hate them because they kill lots of our cells too!
Take care, don't worry, and I hope the UTI is clearing up now.
Have the doctor checked to see if your bladder drop this happened to my sister
Because she would have uti all the time
Not sure if it will help but I had a bad infection show up after surgery. In spite of taking a ton of cipro. It Turned out to be Mrsa. Cipro did nothing.culture started out to be simple UTI.staph. went Mrsa after 3 or4 days
Bad luck, Bill, MRSA is hard to get rid of - I hope you've managed it by now (with another ton of a different antobiotic, I expect).
Cipro is also hard to get rid of - it (or Levo or the other FQs) can stay in your system for a long time after you've taken it. You may even forget you were given a ton of it, then next time they prescribe you some - BAM, it gets to you. Doctors will deny there's a problem but if you read the information leaflet (with a black box warning if you're in the US, just to make sure you notice it!), you'll see theres a host of problems you could get - and people do get. Be careful, and good luck this time.
So far so good.after 3 other anti biotics feel better.now the fear of not knowing what's next.guess it's a waiting game to see if we killed it or I become a carrier.
That's good news. Just remember to never accept any fluoroquinolone ever again! It might be a good idea to keep off any steroids or NSAIDS (whatever you call ibuprofen in the US for example). One guy I know of had very little effect from Cipro then moths later took just one ibuprofen and now he's a wreck. Only saying....
Have you tried probiotics? Sounds wierd I know but the probiotic lactobacillius acidopholis actually strengthens the immunity of the urethra and vagina. I would also suggest adding iodine and magnesium too. Bupleurum wouldnt hurt either. If your system has been bad so long you dont know how far into your digestive track it goes.