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

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! 

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!

Hi Janelynn,  If you don't always have infection you my have developed IC, intersitial cystitis which will give you the same symptoms as an UTI infection but there is no bacteria in the culture so antibiootics don't work.. I have joined the IC group as they are looking for a cure and not just treating the simptoms. I myself have found that on the on set of feeling like an UTI coming on I take a Tylenol #3 and a buscopan and with in an hour and a half I'm starting to feel I can get on with my life. I am looking at "Prelief" as my Urologist has recommened it to lake before eating acidity foods or drinks. I do stay away from chocolate, carbonated drinks, caffine and citris, I also do not take cranberry as it is very acitic too. I love my cups of tea and have found a decafe "Typhoo" that tastes like tea and has not had the bad affects as regular would. Not sure if any of this will help you but it might, as I have less pain less often at the momment and that's mostly what we are hoping for if it can't be cured.

Crystal

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.

hi Waffalobill,

and this worked for you? please what antibiotics were you placed on?

 

Just reading this 8 month old post.  That is really interesting that the mixing of 3 antibiotics did the trick.  I meant to ask my Uro the last visit about the feasibility of using two different antibiotics together.

He actually called in the infectious desease specialist cause he was there. He told me a resistant infection can be difficult. To ensure it didn't build up a new resistance, they attack it with 3. He said the 1st one kinda builds a wall. The second breaks it down. This keeps it from gaining any ground. After fighting it like that for a week, they introduce the 3rd. It can't fight all 3 or build resistance. Kills it. BUT it is a little rough on you. The first 2 antibiotics was given IV. They blew out all the veins in my arms. They had to restart the IV every day. When they started they thought I would only be there 2 days. If they knew it would take 5 they would have set up a picc line. The one antibiotic took 3 and a half hours to run. And the machine was set to run almost wide open. The other drug gave me a migraine Everytime they ran it. Strong stuff. None of my nurses had ever even heard of it. The third was pills they sent me home with. Was bactrum. The meds are residual. They stay in your system a long time. This all happened second week in June. In November I had to have another surgery and the meds was still in my system. Took alot of cipro it did absolutely nothing.

Wow Bill!  I was in the hospital just a day and one half for observation as I took myself to the ER.  While in there, I had two days of Rocephen, then transitioned to an oral.  Neither did any good.  

I have researched all antibiotics (oral and IV) that come up sensitive to my ecoli infection and the IV ones are mostly the more agressive ones that give the worst side effects.  I wanted to get them early on in my (chronic) infection, but doctors here only do that for when the UTI is in the kidney.  Was you in the kidney?

I have been on Bactrim three times, and each time the side effects were worse.  That drug makes me sick as heck.  If ever you want to lose weight ladies, just take a week's worth of that.

As you've read here about Cipro, that is one scary drug.  I won't take it.  Perhaps if I did, I wouldn't be stuck here with this UTI forever.  It's too big of risk.

I am glad you got yours cured.  Me?  I'm on prophylactic antibiotic forever probably.  I have yet to read anyone that has a case like mine.  Two to four days after I stop an antibiotic, I am back in full force UTI.

I had it all threw my UT. Caught it before it got to my blood stream. Guy I know wasn't so lucky. His made his blood stream. He was in the hospital a month.

How do you think you got the UTI Bill?  They are uncommon in men except for older men that have retention.  For sure, the big scare is it getting sepsis. That is why I get on abx right way.  

I had a surgery. Turp = trans urethral resection of the prostate. Someone or something was dirty. Released on a Friday afternoon. Had doc on call on the phone Saturday night. Felt funny. Was back in urologist office early Tuesday morning cause doc wasn't in office Monday. He took a culture with a cath.wednesday at 4 pm I woke up freezing sitting in a 82 degree room. That night/ next morning at 3 am it started again. That's when it hit me. I have a infection. I thought it was from all the cipro. At 9 am called uros office told them I was running a fever. Told me come right in. Got there they took me right in, took my temp. Was 103. Sent me downstairs to admissions. Put me back in the hospital.

Hi there,

Sorry to hear that you are suffering. I actually have the same problem as you. I have an embedded infection in my bladder and have now been on antibiotics for over two years. I am taking two different antibiotics in very high dose. If I miss a dose my UTI will be back with a vengeance. It really is a crazy life. I have literally tried so many things but nothing seems to help. If anyone has any ideas of anything that can help me please let me know. They would not allow me to have any intravenous antibiotics, as they said it was too dangerous. Wishing you all the

best fighting your infection.

Sam x

That sounds awful Sam.  There are only a few abx that are sensitive to my bacteria, and the one I take now, cetftin(cefuroxime), is the only one that works and doesn't cause me bad side effects.  I am getting by on a low dose of one 250mg tablet a day, but I feel I live with a low grade uti while on it.  I still have strange symptoms that don't make sense.  My uro's concern about the continuous abx is that a resistance developes to all antibiotics and then we have nothing to use in a life threatening situation.  However, those like us have no choice.

To be honest, I really haven't given the D-mannose a good test.  I bought it, and I took the power one time.  It made me nauseaus.  Call me a skeptic, but I just don't believe it works as well as so many people claim.  I guess I'm not wanting to take large amounts of it an get diahrrea.  I am petrified of getting C-Diff from the abx and if I were to get diahrrea, I would think that is why.   I've been really lucky that I deal with my current abx as well as I do.

Sam, would you mind telling us with abx you take and the dose?  Are you working with a Urologist or a Primary Care?  Are you in UK or USA?  I am in USA and fortunately in an area with some very good doctors.

OMG, how scary!  I'm glad to hear you were able to beat it.  That could have been life threatening.   I have become a germaphobe lately after reading just how easy it is to get infected.

 

I was lucky. I actually thought about just taking Tylenol or something to reduce the fever. Thought the cipro was doing it. They give you a big cipro after cathing you to fight infection. I figured that on top of the other cipro, plus the surgery meds and all, it was nothing to worry about. I happen to have a thermometer and my temp was high. If I would have tryed to ride it out I would have been in trouble. I drove myself to the docs. He admitted me. Before I could get ahold of my wife she came home saw my car gone and freaked out. Waiting to be admitted and get to a room I was barely able to stand up. I was so weak and nauseous. Was bad. By then my temp was higher. They put cold cloths on me to cool me off.

Hi Marilee,

I'm in the UK and I'm under a Professor Who has prescribed me full dose of Trimethoprim as well as 2 grams a day of Cephalexin. This is only just holding things at bay. I do experience a lot of pain in my bladder and just keep taking pain killers. My bladder is so irritated and inflamed. It's a nightmare isn't it. I'm 49 and feel my life is over!! I have to self catheterise too, as my bladder stopped working. Keep in touch. If you want to message me private, just click on the envelope and I will tell you a couple of things that might really help.

Best wishes,

Sam x

You didn't mention what the antibiotics were. With the names it would give us something to take to our doctors to question in helping ourselves. I have found that not having the right questions to ask the doctors when we visit we don't get the answers we need. I have given up thinking my doctor knows everything. They need some help from us as we know what's happening in our bodies. It would ne nice to think it could be this easy to fix and that we just didn't all have your doctor treating us.

Look forward to your medication names.

Thanks, Crystal

Hi I've been reading your messages and am suffering the same ! I've had uti's for years I'm on my fifth lot of antibiotics and still have symptoms. I've had this infection for two months ! Also take D mannose , I'm taking a high quantity at the mo to try and help but I've now got diareah.

I also have thr dreaded ecoli bacteria and now feel the antibiotics have stopped working. I'm back at the doctors tomorrow and I'm going to be asked to be referred back to the urologist. Have you found any relief yet ? Xx

Oh gosh - I clicked through to see where I'd got my D-Mannose from and lost my nearly finished reply to you!  Will have to start again.

It's early days yet but I have been pain free for over a week now (came off antibiotics 9 days ago - generally it returns after a few days)  I have been taking 3 things - a capryllic tablet once or twice a day, a tincture of echanacea and Uva Ursa and the D - Mannose powder several times.  I feel ithe infection is still lurking but after dosing myself immediately the feeling of the infection is setting in, the feeling diminishes and more or less goes.  I got my D-Mannose from www.your supplements.  It's a pure powder, not contaminated by any additives that you get in the tablets.  The company was very good indeed - it arrived the following day, with free postage.  I've heard that there are dfferent grades of D- Mannose as it can be made from various sources.  I've also read that people have different healing times from it.  Some can feel the difference immediately and for others it can take a month or more.  Perhaps it depends on how well rooted the bacteria is.

In my case I suspect that there is also a vaginal problem - in fact I wonder if it starts there and then migrates.  I' m researching a lacto-bacillis cream you can get from Boots and other chemists, which redresses the ph balance - get that right and the vagina is self-cleansing.  The dr suggested an oestrogen cream but I am wary about meddling with my hormones which have always worked perfectly - never any PMT, no probs with conceiving at exactly the time I chose, no menopause to speak of - just stopped one month, no hot flushes....   I'm convinced it's cos I've never taken the pill or messed with my hormones in any way!  

This afternoon I'm going from a MRI scan to make sure there's nothing exascerbating (spelling??) the situation - cyst or stones etc.   Keep in touch and don't give up!  Keep reading too!    x

Thank you for replying and I pray your test goes well.

There are so many sufferers I'm quite shocked . I will try your suggestions I am desperate to rid myself of this as we all are . Can I ask please which site you get your d mannose from , I think illl try the powder .thank you again , I'm so glad I've found this site and know that I'm not alone xx

Hi again Julie -  This morning my urine was slightly cloudy and after taking the three remedies I mentioned several times, it has now  totally cleared!  It works!!  I don't doubt the infection will try to come back till it's totally eradicated but the fact that I now feel easy 'down there' and the urine has cleared , fills me with hope.  I think I mentioned where I got the D mannose from but here it is again  - www.your supplements but it is  also known as JG Supplements.  The mannose is called 'your supplements'.  It's a bit confusing.  It was £9 something with free postage and arrived the day after I'd ordered it. (Aha I'm in the UK - maybe you're in USA or somewhere!)

Ultra sound showed up bladder to be totally normal but I'm apparently not draining it properly. They took two scans - one with full bladder and then one with an empty one.  I think with the amount of water I'd been drinking it might have filled up a bit between loo and second scan!  I was very careful to make sure I drained it well, but they might be correct as i have a bit of a prolapse.  

Let me know how you get on!   xx

Just a few tips,always just before going to bed empty your bladder once then after washing etc, make sure you sit "bolt " upright on the toilet & make sure your bladder is completely empty -even if it's only minute amount.This really does help making sure there is an empty bladder.

It is such a relief knowing that DMannose really helped get rid of those horrible uti symptoms.The bloating & loose stools I can put up with ,I did find the powder was less symptomatic than the tablets.

Nearly  80/90% of uti infections are EColi, that's why D Mannose most probably works on most people 

I'm still convinced that ubiquitous e-coli in women is due to loo design in the UK and splash-back or should I say splash up, the contaminated water hitting the wrong bits.  In Holland the poo sits on a sort of shelf and so there is no danger of splashback.  Putting a piece of paper in the loo before starting to pooh can help a bit.  

Re emptying the bladder completely I wonder if it varies depending on condition.  I find if I lean forward and push my hands against the bladder wall I can squeeze more out.  Sitting bold upright doesn't seem to make any difference.  Oh the joys of the female body especially as one grows older!!

Hi , the doctor said I still have infection showing on the dipstick ( no surprise there ) she's sending a sample off to see what shows, but as I'm still on amoxaclave I hope the infection shows !

She's also given me oestrogen pesseries as she thinks they may help , and at the moment I'll try anything I'm sick of taking antibiotics.

She still hasn't referred me back to the gynaecologist which I wish she would so now another waiting game .

I hope you're all finding some relief xx

Oh forgot to mention, I'm also in the UK and am definitely going to get my d mannose from where you get yours , I buy the tablets and they're so much more expensive.

Like you I also don't drain my bladder properly , this seems to be quite common from what I've read xx

Very true and you're the first person to say the tablets are better than thr powder I was going to try the powder now as I've read so many positives about it xx

No I don't think tablets are better than the powder!   I suspect it was a miswrite on your part.  The powder is purer.  The only tablets I take are Capryllic acid as I haven't found that in powder form.  Must look and see if it is available in powder.  I've even forgotten why I take them now except I read somewhere they are better than antibiotics! xx

I afraid you mis read my posting-less symptomatic means I don't get as many side effects with the powder, The tablets gave me more side effects -bloating & loose stools,not as much with the powder

You posted you were on co amoxiclav.its good your GP has sent the sample away,to make sure you're on the correct antibiotics & also what type of infection it is .if it's EColi ,D Mannose may help,but if it's another type it won't.Go back to your GP if nothing works for you

It's definitely Ecoli it's always been the same . The last two samples showed sensitivity to the co amoxiclave so I don't understand why after four lots of those and one lot of another antibiotic I still have infection.

I've been taking d mannose for over a year and they really helped at first but now seem to have stopped working .

I hadn't heard of Capryllic acid before , if they're better than antibiotics they're definitely worth a try xx

You may had had too many antibiotics,after a while your defence system gets immune to them,keep trying the DMannose .Large dose to begin with the gradually wean yourself down to a lower maintenance dose.Fingers xd -I hope it works 

I'm take five tablets of d mannose a day at the mo they're 1000mg a tablet , not sure if that's the correct dose but I'm hoping it works.i think you're right our bodies do get too used to the antibiotics, I hope one day they find something to treat effectively, I'm sure if more men suffered they may find something sooner xx

Do look up Capryllic acid tablets.  I read somewhere that they work better than anti-biotics.  Early days yet but am taking them too!

Thank you , I'll go online now and look xx

Hi there,

Correct me if I'm wrong, but I was always under the understanding that capryllic acid tablets were used for treating fungus infections like candida etc. If they do work like antibiotics, I will take them.

I'm on my last two antibiotics, so would definitely welcome an alternative.

Thanx,

Sam xx

I've read they are used for fungus but are also helpful for other things , will be worth some research I think especially if antibiotics are limited. I'm allergic to trimethoprim and the co amoxaclave seems to have stopped working and I know you're on the last two they can use . You'd think they'd be something else they can use as so many people are suffering. I do wonder why our bladders seem to stop working efficiently and then as a consequence breed infection. I remember only being about 14 when I had my first infection and they definitely became worse after I had my children , both labours resulted in my bladder shutting down and I was unable to urinanate and had to have a catheter in for a few days, and I question is it that that's caused me to retain urine. Does anyone know what/when caused their infections?

I hope they find an alternative soon Sam , it must be particularly hard when you have a young family. Xx

Mmm not sure now why I take Capryllic acid tablets - I decided to take them cos of googling.  However the combination of them, D mannose and the tincture of echanacea & Uva Ursa seems to be working.  The dr also prescribed some oestrogen cream which I've been reluctantly using.  I'm scared to stop any of them in case the infection returns!!  At last, for the first time today, (after a week of alternatives and a month prior to that of anti-biotics on and off) I feel absolutely normal for the first time - that there's nothing lurking.