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

I have the same issue, have you found anything that helps in the last year?

How are you now?  Just been reading all the other stories, how i sympathise with you all. This wretched thing, whether it be cystitis or inflammed urethra is unbearable. Its been said you need to take the waterfall D Mannose for at least 3 months!   at this rate one tub will last a few days, i bought 2 but obviously not enough then.  To exspensive im afraid.

If anyone can tell us about a natural efficient cure please please let us all know. My discomfort is mainly in the uthretha, just finshed a  course of antibiotics trimethroptrim, seemed to be going but on last day of tablets all back again and ive taken five days worth instead of 3 which it said on the box. 

Havn't been to doctors,apart from the fact i felt to uncomfortabe to go, pretty sure it was an infection though most times it turns out to be negative which is how i come to have some antibitoics at home cos i .  never needed them. I found the contraseptive pill gave me this every month so hormone inbalance plays a part.

Chocolate, citris fruits, all caffiene needs to be avoided and sugary foods as this feed bacteria.

Are you taking D Mannose powder and are you taking it correctly because i just found that you should take it in less than half a glass ,wait 45 mins then go loo and flush out bacteria then drink as normal till next dose ? Also have you tried drinking lemon water (squeezed fresh lemon juice that is ) Helps to neutralize acidity , Also what about taking some Probiotic capsules for putting back good bacteria antibiotics kill? Also have you tried Magnesium Citrate  capsules  to alkalinize the urine.?

I haven't tried magnesium citrate but have used the lemon water.  Dmannose was working for five months then I got zapped with another uti.  I must have not taken it correctly one day?  I normally did 3 teaspoons a day.

I've suffered with uti for over 30 years.  And was glad to get relief without antibiotics!

And now I just finished a round of Bactrim ten days.  Four days later 

I've got the uti again!  I was using dmannose during those days too!

My dr loves to prescribe antibiotics and ordered another ten days of Bactrim!  Ive taken two days and it's not helping much!  The bacteria must know this stuff by now?

I'm reading everything I can and all the supplements available to cure uti.  I need a really good probiotic can you recommend one?  They have refrigerated and shelf varieties.

Sorry to hear you've had another bout of uti.youve mist probably had too many antibiotics &a they just won't work anymore.did you send a sample off with your doctor to make sure that you were on the correct antibiotic,as most doctors just give out to begin with a "broad spectrum" antibiotic that helps to get rid of the infection but not cure it completely & the uti comes back after a few days.

Fingers crossed after my last session of uti I haven't had any reoccurrence.but I have the DMannose on hand just in case

i had to take a really large doseage of DMannose when I did have the last UTI for at least 4-5 days &a it did give me upset tummy too then gradually reduce the doseage to twice a day , them once a day etc 

The biggest thing you must try to do is drink water based drinks as much as you can

non of us really drink enough,I'm one of them,but at least do the best you can with the water

i do hope you get relief soon

There are two I recommend - AssistPrescript or maybe it's PrescriptAssist! (I get muddled)  They work for me a treat and also recommeded by Good Health Naturally (Robert Redfern's internet blog - incidently he also gives free advice) and there's also a powder called Prime Directive whch I got from somewhere from Scotland, but I think it originally came from Australia, which I used to use.  

D-Mannose has finally sorted me - or should I say I have been clear for over two weeks now.  I also used home made organic yoghourt internally (Vaginally as well as orally.)  I make it in a thermos flask over night from a couple of tablespoons from a small pot of organic yoghourt as a starter but now just use mine as a starter.   I'm still taking about a third of a teaspoon of D-Mannose twice a day.   D Mannose, I've heard works best with the e-coli cross-infection.   My Dr prescribed Macrobid which also didn't do much till I started taking the D Mannose.  Part of the problem, I think, is that the recommended anti-biotic dose is only 3 days and it needs at least a week.  It doesn't knock it on the head so another 3 days are prescribed with a gap in between (usually the weekend I found!)  The infection then gets a hold.  I insisted on a week's worth and then another week's worth and am not really sure if it was that which helped me or the D-mannose.  I suspect the combination of the two.  For those on anti-biotics I advise you to be insistent on having more than three days!

By the way I note people are taking large doses of D mannose and givingthe selves an upset stomach.  I took  no more than two heaped scoops (just less than 1/2 level teasp ) in about 10 ml of water every hour to begin with and then gradually reduced it.  My packet is still half full - it lasts a long time! I now sometimes just eat the powder off the spoon and then have a sip of water!  Good luck.  

One more thing - if you're past menopause you might like to try a bit of vaginal cream from the doctor.  I was very reluctant to do so but discovered in applying it that my vagina looked like the surace of the moon with numerous puckers and pockets which could harbour infection which then infects the urethra).  It also helps to ease the 'feeling down there'!  

Try getting tested for  mycoplasma or Ureaplasma.    I was getting infections every 4 to 6 weeks and the antibiotic's would just get rid of it temporarily… Usually Cipro  since I'm allergic to Bactrim… It turns out, with a more specific test, that I had Ureaplasma bacteria also.... she said it is very difficult to get rid of but I went on a month of a specific med and I feel like a whole new person honestly!   

Hi never heard of mycoplasma or Ureaplasma, do these not show up when they send a sample to the path lab to be annalised.? My last results showed as negative even though i had the symptoms of an UTI and was given two lots of antibiotics which it turned out i never needed, not impressed at all.

The waterfall D mannose which works only if its the ecoli causing the problems is very exspensive and you need tubs full of the stuff, at least 3 in the begining.  When ever i have had results come back showing an infection im never told exactly what type.  What were the symptoms of the Ureaplasma  bacteria?  

Sue x

My symptoms were identical to a uti.     And no, routine  urine tests will not show this.      I requested to be referred to a specialist (urologist)and that's where they tested me for the mycoplasma and Ureaplasma. She put me On a month of   Erythromycin.     If you are not allergic to sulfa drugs they will probably put you on doxycycline.   This bacteria is very difficult to get rid of so that's why such a king dose of antibiotics.     Oh, and  your sexual partner ALSO needs to be treated.     My doctor just went ahead and gave my boyfriend a prescription as well.     

***large dose....not king dose.    Lol

Sorry to sound dopey, but is mycoplasma an infection? I'm waiting to see a urologist as after five lots of antibiotics I've still got infection ( sample been tested at hospital) I'll ask about this if so when I finally get an appointment.

I'm going to call doctors again tomorrow as so much pain in my back and lower stomach and feeling really unwell at the mo. Hoping we all find relief soon 

Hi  Julie -   I really sympathise.  As you are with the hospital for treatment I presume they've given you a MRI?  If you have pain in the back it could be the infection is involving the kidneys as well.  I'm afraid I know little about coplasma but it sounds like a specific sort of infection.  There are numerous types of bacteria which can infect.  It was the ecoli infection I had, so I realy only know a bit about that.  Do keep reading everyone's blogs (is that the right word (?!) becasue you can learn a lot and also look up coplasma, cos  it's best to be armed with a bit of knowledge so you can ask the right questions when seeing the dr or someone in the hospital.  Good luck.  Let us know how it goes.

 

Thank you , 

I must admit I've already learned a lot from the blogs and it's nice to talk to people who are going through the same .

I haven't seen the urologist yet, I spoke to the doctor again today as I feel so ill and asked if there was another antibiotic I could try , I'm feeling pretty desperate at the mo . He said they are reluctant to try another one as I've had four lots of co amoxaclave and one of another I can't remember, I'm allergic to trimethoprim. I have the ecoli infection which it always has been . I'm take d-mannose 1000mg tablet four a day at the mo but it's not helped yet . The doctor said they were going to contact the hospital to try and hurry my appointment through , but that doesn't help now. Do you get very tired with your infection? I'm exhausted and sleeping so much , I work in a school so luckily I'm off at the moment as I really don't know how I'd work like this . I'm emptying my bladder so often which doesn't help as I'm up at least three times a night. Xx

Oh Julie - what can I say - you poor thing.  Mine has not been back for over two weeks now, after anti-biotic after antibiotic.  The dr gave me macrobid but I had the D/mannose along-side it (several times a day, never at night cos I reckon sleep heals and I didn't want to wake up!) -  I took the powder cos it's purer - the tablets contain fillers. Yoghourt (organic, home made) both ends, Uva Ursa tincture with echanacea several times a day, capryllic acid tabs for good measure (I read somewhere that capryllic acid is a natural antibiotic?), wash front and back after each motion - sponge for back, flannel for front so no cross infection, vit C cos it's good for healing (!), cooked in coconut oil (Capryllic acid comes from coconuts which have many healing properties), tried to keep off sugar (not always successfully), took one tab of AssistPrescript probiotics before eating in the morning and lots of fresh fruit and veggies.  Oh yes, and the oestrogen cream to thicken the vaginal walls a bit. I make sure I drain the bladder completely each time I go - some people say to sit upright.  After experimentation I found, because of a bit of a retrocele, I have to stand up hands on knees, leaning forward, for the last bit.    Don't give up and keep lobbying the doctor. They need to learn that three days of anti-biotics initially is very false economy!

In the ultrasound scan they discovered some cysts in/on? one kidney.  I've had a CT on those but no results as yet.  If it's something worse than fluid filled sacs I shall explore alternative treatments - one that boosts the immune system rather than annhilates it!  Meanwhile I'm drinking turmeric tea to try to get rid of them!

Thanks Cassier, ill take a  note of this one and mention it to my doctor if i keep getting these flare ups. So if you have the mycoplasma and Ureaplasma it wont show up in the path lab that test your urine, have i read this correctly? Or is it that the path lab only rule out certain causes? Did your results keep coming back as negative before you saw the urologist.?

Sue 

Hi Susan,

I feel your pain. I am also suffer ring from the same symptoms since January 2017.

I have been tested from different doctors and they couldn't find anything wrong but what they were doing was that only were checking  for ecoli using these dipping strips, which they showed nothing. I live in Germany and the doctors here  do what they  have learned.  If they can't find anything they just put it on stress. Lucky, I visited my parents in Cyprus and I went to an urologist there that ordered to be tested for ureapladma which I came positive! I was given antibiotics for one month, but it was only after 2-3weeks that I started feeling a bit better. Now I have some quite good days and some not so much but not like before. What is seems to help me is coconut oil. I take one spoon every morning. I also taking multivitamins to help my body become better and find whatever is finding.

Yes it is an infection unfortunately.    It's a very hard bacteria to get rid of.   That's why it's a month long treatment.    Let me know what they say.     Good luck hunny

I had several tests done at my gyno and it never showed up there.   Occasionally there would be E. coli but not Ureaplasma.    I don't think they tested for that particular bacteria until I saw my urologist.   The test needs to be SPECIFIC.     Good luck!!   Let me know what they say.     

I'm glad Alex, that you also mentioned the coconut oil.  In the beginning I put some in internally as well as took capryllic acid tablets (made from coconuts - a natural antibiotic substitute, I've read) and it helped a bit to relieve the pain.

 

Thank you for the info.

I've got to pick up a prescription for antibiotics this  from my gp this morning, it's not amoxaclave, I'll let you know what it is once I've picked it up .  I'm confused as to why they've even given me it as my own gp said they didnt want to give me anything else until I'd seen a urologist, but this was the duty gp yesterday and I'm wondering if he even read my notes . 

I will definitely ask about this other infection when I get my appointment x

Hi Jane only just seen this, I was taking the D mannose powder  a teaspoon every 3 hrs in very little warm water as they suggested. Problem is ive never been told what ive been dealing with hear, e coli infection?  Apparently not according to my results after taking two lots of antibiotics and then to find i had no infection at all ! So no infection, do i need the D Mannose. would it help with general inflammation  or what ever i had.   Im taking probiotics daily as well, have been for years. Im sure i read you may need to take the mannose  for a few weeks  in some cases for it to work as well. Im getting another flare up once again but no burning, just the urge to go a lot and aching and throbbing over the lower abdomen but whats the point of going back to the drs when he admitted the dip stick isnt a very reliable result they use in the surgery either, That said i had an infection but came back negative!

I will try the Magnesium Citrate  capsules, where you buy these from please?

Coconut oil is also an anit-inflammatory.  I hope they post my comments...I been researching this for quite a while.  

Sorry to ask a stupid question but you mention using live yoghurt for cleaning down below and my urologist mentioned the same. Do you apply it and wash it off or leave it on?

Hi Chris - Not sure if you're a male Chris or a female Chris!  If you're female I can advise; if male you don't have the right container!!    The vagina has a specific PH balance apparently and if it is out of balance, inserting a teaspoon or so of yoghurt and leaving it there, seems to sort things out.  I would make sure you use organic yoghurt so you don't add any hormones you don't want!  You don't need to wash it out or anything - just put in as much as can be absorbed.

Thank you, I'm female so will give that a go. I'll try anything to stop this UTI coming back. So far so good.

Good luck Chris.  I've been clear for about 5 - 6 weeks now and am hopeful it will continue that way.  I still take a dose of D-mannose once every few days as an insurance policy and make sure I empty properly every time.  I'm also taking a probiotic for good measure!

Hi Julie, 

I’m sorry about your pain. I’ve been suffering from symptoms of a UTI with no infection for a year now. It genuinely changed my life and caused/ causes  immense anxiety. What surprisingly has helped me is deep massage - in the area of he bladder. There is a book called a headache in he pelvis that explains how the muscular nervous system is directly linked to the bladder and urethra. If you google an osteopath called NIck Potter he explains breathing exercises that help to calm the nervous system. I know that this sounds off the beaten path BUT it’s the only thing that’s calmed my bladder together with d mannos. Also maybe keep a bladder diary and see if things irritate it... I also have to restrict my diet and keep away from any inflammatory food- spicy/ wine/ acidic etc. if you google painful bladder syndrome it does say what foods to avoid. Having said all thins I believe the bladder can be helped with these deep massages and breathing exercises. I hope this helps and I hope you are doing ok. 

Hi I was just wondering what make of DMannos do you take? Do you take it daily (all the time ) even when you haven’t got a water infection as a preventive?

Many thanks 

Grace 

Hi Grace - I bought it in powder from from JG Supplements (they were the cheapest at the time)  I started off taking 1/2 teaspoonful every hour or two for the first day or so, or until the symptoms  started to get better.  I also took an Uva Ursa tincture.  After a couple of weeks, or whenever it felt better (long time ago now so can't remember exactly) I continued to take it  a couple of of times a day for a few days longer.  Once or twice after a week or two  after I'd stopped I felt something might be brewing and took another dose or two for a couple of days, but since taking it I haven't had an infection for months, or needed to take it.   I might add that I discovered I wasn't emptying the bladder totally and if I half stand and lean forward after I think I've emptied the bladder I am able to empty out another 20 ml or so.  Maybe there 's a kink in the plumbing somewhere after 4 kids!  You might like to get that assessed at the hospital - they scanned me after I thought I was empty and discovered I wasn't so I was reinfecting myself all the time by leaving stale urine in there.  I note some people took copious amounts of D- Mannose.  I didn't even use one whole packet and still have about 1/3 left if I ever need it again.  I found 1/2 teasp at a time quite sufficient for the first couple of days and then I would reduce it further to say 1/3 teasp.  I know some people took 1 - 2 teasp a time which seems unnecessary - or was for me anyway. maybe the Uva Ursa tincture - (It had something else in it - forget what) made it more efficient.  I think perhaps everyone is different and you might have to experiment with your own dose.  It worked a treat for me though!  Good luck!

Same happened to me b

Same happened to me but not with the powder, when I was 18 I had on going infections, after 6 months the urologist gave me on hand antibiotics to take everyday and it went completely. I had the odd infection here and there but one antibiotic from my pack would do. Then in 2016 I had one and it just wouldn't shift.... I've tried everything and even when I haven't got one my bladder is.constantly irritated and I feel like I have one. I feel as though my bladder walls are weak, apparently there is a dye that the urologist can insert into your bladder to rebuild the walls and also this thing known as a bladder flush (when I had the bladder camera my bladder was FULL of grit) but I haven't never been offered anything but antibiotics and then a possible bladder operation to stretch my bladder..... I'm now 26 and 3 years on I can't seem to shift them! I feel your pain

There are chondroitin/quercetin (plus other stuff) supplements that help rebuild the bladder lining. I was in a similar situation and started taking one of them and found relief quite quickly. I think about my bladder so much less now. I tried Cystorenew but I believe Cystoprotek has worked for many as well.

Lots of god advice about D Mannose and yes some people take a daily maintenance dose maybe at night to limit the onset of infections. Drinking too much water flushes it out before its had a chance to work (discussed in the thread) and at night it has a chance to sit in the bladder longer to be effective. Cranberry tablets at night as well can help (not juice) but for people with significant problems I wonder if anyone has tried Hiprex, a sort of bladder disinfectant (online it says antibiotic, which isn't strictly true). Here's some info about Uromune which has shown good results in Europe. However, it only covers e-coli, enterococcus faecalis, kliebsiella and proteus vulgaris so if there are  other organisms it will not work so full work up + MSU + fastidious organism screens are necessary. In the UK it's not available on NHS prescription but a 3 month course is about £300 via private prescription. Uva Ursi is said to be very good, some people say better than D Mannose but I've no personal experience. I last point about urine retention, learning to relax the pelvic floor is helpful, a tense pelvic floor doesn't help with full bladder emptying and it's something women have but don't always know they have - we're always told to 'tighten it up'!. Self help and physio can help with this.

Brilliant ideas thank you.

I’ve been free from an infection for a couple of months , although I’m starting to recognise my urine has the smell of infection at the moment. I’m taking DMannose , triple strength cranberry tablets and Urvi usi ( excuse spelling)and they have stopped the daily pain I had . I’ve been taking them all in the morning but will now start at night and see if I notice a difference.

Thank you again 

Julie, did you get sorted?  I've been having UTI's for years now since I went through the menopause.  This time it got really bad with blood and pus in my urine.  I finished a 3 day 100mg of MacroBid yesterday and have to take another sample in to the doctors in one months time.  But I'll bet its before then...My sister suffers too and was on holiday in Turkey recently when she took ill,  A local pharmacist gave her Sistifx/D-Mannose.  It worked for her she says.  She has sent me a pack of 20 capsules but its all in Turkish.  Could I ask, first did you get sorted and if so was it anti-biotics and did the D-Mannose work for you and if so was it in combination with antibiotics, and did you have capsules , if so how many a day did you take?  Thank you.  Mary.

Hi Mary sorry to hear you’re suffering from the dreaded uti! I can honestly say it’s the worst pain I’ve ever experienced.

I am still pain free thank God, I really think it is the combination of the cranberry tablets, Urva Ursi and D-mannose . I take one each of the tablets every day and a spoonful of the D-mannose powder , if I suspect the infection is returning I up the dose of D-mannose to 6 or 7 a day until the infection goes then I go back to one a day . I’ve found the powder is much more effective for me , the tablets didn’t seem to work as well. It’s wonderful to not have to constantly be on antibiotics! For me the antibiotics stopped working, I took at least five courses of antibiotics one after the other but nothing changed . When I took a low dose one a day for over a year I found this helpful, but I didn’t want to go back to that and wanted to find a more natural approach. Although when I have the uti pain, I would really try anything ! Xx

Dear Juliehr

I am at wits end with chronic uti

Post menopause seems to be the cause as per my Urologist.

I’m doing what she prescribed.

Hormone cream 2x weekly and  daily methenamine in addition to dmannose.  I take doses before bedtime middle of night and early morning.  

But so far this year now have 4 confirmed uti.  Last year 8 confirmed.  And before than one every month for a year!

It’s gotten a little better but I’d like to know more about UVA ursi...

I’ve heard it’s dangerous to use for longer than two weeks at a time?  But many years ago people used it for uti.

  Also I read experts aren’t sure cranberry really works.  

I think it’s all individual?  My dr told me to just keep trying things to see what works.  

In the meantime, I’m on macrobid as Cipro no longer works nor does bactrum.  

I’m interested in learning what works for others. Thank you.

Hi Lina

I feel your pain . My consultant told me to take the cranberry tablets , only the triple strength help me. I read about the Urva ursi from another sufferer from this site . Their advice has helped me , do you take the powder or the tablets of d mannose ? I found the tablets weren’t as effective. 

I too found the antibiotics were not working and I’m allergic to trimethoprim so you begin to run out of options . I know the d mannose only works on the ecoli infection, do you know what yours is ? 

Also I researched online , there are so many helpful sites it’s really worth researching as much as you can to find what works for you. I hope this helps , I know I was at my wits end with the pain xx

Hi, Lina.  I am on the other side of 2 straight years of UTIs followed by interstitial cystitis. I am still researching the cause and how both are/were connected to other health issues I'm experiencing.  I can tell you what helped me: 

For chronic UTIs:

-The usual elimination of acid-producing food & drink (alcohol, coffee, caffeine, etc.) to minimize irritation of an already inflamed bladder.

-The usual inclusion probiotics and herbals: uva ursa, goldenseal, etc. No noticeable improvements from these inclusions, to be honest.

-Eliminating nearly all sugar from my diet = seemed to really help.  (Possible correlation to candida?)

-Powdered d-mannose in water in the morning and evening.  Tried not to use too much, as it can become a bladder irritant at higher dosages. The d-mannose capsules didn't help me.  

-Drinking club soda and water only.  The club soda seemed to really help by keeping my bladder alkaline. My urologist recommended keeping my urine acidic.  That was horrible advice (at least for me), as acidic urine irritated the hell out of my bladder.

Post-UTI IC:

-The club soda really helped bladder irritation.

-Keeping the bladder full as much as possible. 

-Incorporating Betaine HCL (i.e. stomach acid) into my diet when I realized I had low stomach acid. My IC is almost completely gone since starting the Betaine HCL.  I believe the primary IC issue was my digestion.  (I was possibly not properly digesting food and that was affecting the chemical composition of my urine...which was being excreted into a damaged bladder? Not sure.)

I hope this helps someone!