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

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

Hi Sophie

I'm pretty new to this group and I've been through a lot of the same symptoms as many others on here. Back in September I was told by urgent care I had resistant strain of Ecoli in my urine. Went there three times. Different antibiotics every time. And then I saw a Urologist. He refused to listed to me. Never tested my urine. Told me I'd have to live like this as it was IC. I went to him three months trying to get him to listen and test my urine. That was a huge waste. So then I had to wait two more months to see a Urogynocologist. She sent my urine to labs. And indeed I had Ecoli. She treated me with Macrobid and augmentin. Pain got worse. Went to ER. Tested urine but had to wait days. So they gave me an IV of antibiotics and sent me home. So when I did my urine test at ER I was still currently on augmentin so I knew my test would come out negative because of that. And it did. So Drs told me to stop antibiotics no infection. I knew they were wrong but I stopped anyway. So a month later brings me to last week. Pain getting worse. Urethral burning terrible. Cloudy strong smelling urine with flakes of skin. Same symptoms I've been having since I've had this resistant Ecoli. So my dr orders another urine culture. I get one done. Problem is it wasn't a clean case. Came back with mixed flora meaning contaminated. I didn't catch mid stream. I caught the first initial urine. Ugh I should've known. So I explain this to my dr as well as my last urine done in ER. Both not correct results and I know why. She still won't listen or help me. I know this infection is just getting worse. I can barely stand up straight as I'm hunched over in pain. My pelvic bone is sore from my urethra on complete fire 24/7. This pain is unbearable. I just want Drs to listen. I don't know what to do. I don't see a new Urologist til end of May but I can't just suffer as pain getting worse. I think I may buy the d Mannose now and give it a shot. I know these antibiotics aren't working and just getting more resistant. Hurting me more than doing me good. I'd love to know what brand of D Mannose to buy and how much to take. I'm sure I'll need to start out with a lot of it in the beginning. I just need this gone and need this urethral burning and pain to stop. I do Not have IC. I have Ecoli! If only Drs would listen these days. If I don't help myself then I'm going to die. I don't have any other options right now. I'm only taking Elmiron and Elavil because my dr swears I have IC and won't retest my urine and the meds aren't helping on little bit. I also follow IC diet only because it's bladder friendly and I'm in a so much pain and have been since Sept. It's ridiculous. All I do is cry. I'm 39 and have four kids. No OBGYN issues at all. I have four csections and no issues. All I have is an under active thyroid and anemia. No other medical conditions. I was just so lucky to get Ecoli UTI in September but have had horrible medical care this entire time. Please help! I want my life back and to not suffer anymore. Urethral pain has got to be the Worst!!!! Thank you!

Some things you said caught my eye.  I myself have struggled with chronic UTI for 2 years. (7x-10x/year) I am still struggling, but do believe that powdered d-mannose has been helping reduce the frequency of infections, but only more time will tell.  Regarding your pain, I recently read a book which specifically noted that Macrobid (aka Nitrofurantoin) and I think even Augmentin can make these conditions WORSE, explaining the pain you are now feeling. The book also recommends alkalinising the urine to help heal the bladder lining, which is likely damaged in many of us.  You can start this process by taking a bit of baking soda in water (tsp? can't remember the recommended dosage); it may help with your pain.  I found it very enlightening.

Hi Tara

I am so sorry that you are going through this and taking care of four children must be so very difficult!  Are you taking Phenazopyridine for the pain at least??  It really helps until they can get this under control.  If you can't get a prescription they have over the counter UTI pain relief. Your pharmacist should be able to help you.  Have you been on CIPRO for the ecoli UTI?  There is another blogger that I have been blogging with that can help you with D-mannose. Check the other sites with D-mannose I believe her name is Goldie2016.  Her info is under "D-Mannose.....Not Working......and more."  check it out she is very helpful!  You have to get this under control dear Tara.  Please go to a different doctor to get the help you need. Yes UTI pain is the worst ....so please get the pain meds to help you get through the days until you get help. You must be careful not to let this go too lon you don't want to get kidney infection.....Where do you live?  I am in the US.  Goldie also mentioned other meds that is only sold in Europe........oh my goodness I just went back to find our blog and it appears that all was deleted by a moderator.......so sad.  I'm sorry I cannot share as all the info is now gone...I wish I would have written her advice down..  I do not know why we were deleted. Please keep us posted Tara.  

Wendy

Hi Tara

how are you feeling?  Please keep us posted.

wendy

Hi Tara,

So sorry to hear of your suffering. I too am in your situation. There is a few things that have helped me along the three years that I have suffered. One thing I discovered is AZO, this is an anaesthetic for the bladder and urethra, but you have to use it sparingly. I got mine from America. Also another tip is to sit in a hot bath with salt in. You really do need to ask for a second opinion. You cannot be left like this in this terrible pain. The pain I experience when my infection is full blown is enough to make me want to die. I am a very levelheaded woman but this is just terrible. I personally did not find d-mannose worked for me. You probably have and embedded infection which just re-occurs all of the time like me. You really need to see somebody that knows what they are doing. I really hope that you get the help that you need.

Feel free to message me privately if you want to discuss it further.

Best wishes,

Sam

I can't recommend a antbiotic but Elmiron didn't do a thing for my pain and it was SO expensive. I am taking Tylenol #3 and "Busopan".when needed, in an hour things have settled so I can do something other then sit and cry and run to the bathroom. The buscopan is an antispasmodic. All I can say is that this works for me! I went to an alergist and was tested for foods that might set things off and only strawberries and oranges were coming up and then our of 1 to 9 only a 4 or less. It was worth looking into in case it is something you might be eating. I hope you find something soon, as I feel you are becoming desperate and your hightened stress is not helping things settle down. The Tylenol will also help you relax, Oh I also have to take stool softeners when I take the Tylenol as it causes constipation which doesn't help with relaxing either if that happens. I wish you luck in finding something helpful.

Crystal

I used to suffer from recurring UTIs also. I'd finish antibiotics and within a week they would come right back. I was constantly going from one Dr to another and trying different antibiotics. Urologist told me I'd probably have to go on low dose antibiotics for at least 6 months. That's when I started to really, really research the causes of resistance bacteria. I learned that I'd have to break through the cell wall of the bacteria before I could get rid of it. And what I found that done this was Berberine. I took 500 mg 3 times a day for 10 days and have not had any issues since. That was 7 months ago. You can not take Berberine for more than two weeks at a time without a long break. I have also in the past 3 months learned to heal my gut with bone broth collagen that prevents toxins from leaking out into my body. Google Berberine for UTI and also google leaky gut. You will learn a lot about how how to prevent infections not just in the urinary tract, but all over your body. 

Hope you find relief from this soon, as I well know what you're going through. 

Hi   Sophie   I really feel for you.     You might like to read my reply to Juliehr a few messages above this.  I also found that putting some cooking grade coconut oil (caprylic acid) on topically helped the pain a bit and I suggest you buy a good probiotice.  I've been taking Prescript assist (or is it assistprescript!) probiotic which is recommended by the internet nutritionist Robert Redfern.  Incidently he is very helpful if you write to him (Good Health Naturally) and will give free advice.  If you have any money to spare I know a brilliant Nutritionist in London who runs all sorts of tests and could no doubt get to the bottom of your problem.  He looks at your blood on a screen in front of you and can tell a lot from that.  He's not cheap but but if you're desperate it could be worth it.  If you want his contact details I'll try to get it to you somehow - not sure if we are allowed to put something like that on this site?     Good luck.

Hi Han - for what it's worth I 've taken both antibiotics and D Mannose at the same time.  I don't know if one cancels out the other but my recokoning is the more you can throw at the infection, the more you might knock it on the head!  After sitting in the hot car for 51/2 hours yesterday I felt the usual slight discomfort.  I had brought some emergency antibiotics with me to where I' m now 'just in case' and decided to put myself back on a short course in case it's getting a hold again!  However I'm also taking the powder, the Capryllic acid tablets and the tincture of Uva Ursa and echanacea.  Maybe overkill but things not too bad at present.  

I didn't mention in one of my previous emails that a scan also showed up some cysts on one of my kidneys - may or may not be related.  I'm not too bothered but don't want the infection to add to the problem if it ascends!

I have just read your posting-just wondered how things are now.Although you had an E Coli infection,you most probably had interstitial cystitis too.The DMannose will help to get rid of both if you really work at it.IC can really be as bad or worse than a proper UTI.the ureters get inflamed ,

Dehydration especially in hot weather,can trigger this-urine gets very concentrated,which if too acidic,irritate the ureters &that burning /painful condition starts.

Keep trying the D Mannose-I thought the powder worked better than the tablets ,but either way,large doses 3-4 days even longer if needed,the gradually reduce the dose age &keep on a preventative dose for a week or two.but above all keep drinking plenty of water based drinks if you can

Hi  Meg,

The near - permanent  UTI s that plagued me for years have been halted (prevented ?) by my taking HIPREX  (METHENAMINE  HIPPURATE)  which I discovered somewhere by googling,  & which I get on free prescription from the gp., taken in tablet  form, 1 gram  twice per day.  I suffer no side effects,  if there are any, although people with gout,  kidney or liver conditions must not take it.

Plus :  advice from the hospital unit :  "You MUST  ensure you empty the bladder completely".

Good  Luck,

Jane

Hi Jane 

I've just read your thread , can I ask what this is please ? I'm desperate and will try anything , I'm going to try the other things suggested on here too. I've just finished another lot of antibiotics and already the infection is back , I don't think it ever went . Don't think I can stand much more of this pain . Xx

I've just found it online be and it says it can only prevent and not treat so can only be taken once infection is cleared . I'll have to wait until I've seen the consultant ( still waiting for an appointment) in the hope he can find something to clear it then maybe he will prescribe this . X

Hi Anne,

You are so spot on about heat and dehydration with these uti's.  It really is a terrible curse. Unless all you ladies can get rid of your infection early on with the correct medication, you could end up like me.  My infection is embedded in my bladder and I am having to take full doses of 2 different antibiotics, which is no fun as well as at age 49 have now been told that I have kidney disease due to all the medication. Keep fighting ladies and we must put more pressure on our government to find a cure for this dreaded affliction. I've been fighting this for 4 years and am allergic to nearly all antibiotics!! Someone help all us sufferers please. The pain is so unbearable, the worst pain ever!!!

Best wishes to all my fellow sufferers. 

Sam xx

SAm I sympathise greatly.  In case you didn't catch my earlier post I'll say again what helped me after numerous bouts of anti-biotics for ecoli.    I used a tincture of Uva Ursa and Echanacea and about ? teaspoon D- Mannose (in powder form so unadulterated) several times a day for the first couple of weeks and gradually reduced the dose, continuing to take it till I'd been clear a week or so.   I also took Capryllic acid which I read somewhere acts like a natural  antibiotic.  I have been clear now for over a month and it's bliss.   Occasionally I take a maintenance dose of D Mannose but not every day.  Also,  I advise you to try different positions when going to  the loo.  I have a bit of a retrocele so find I have to stand, tilting forward, hands on knees, bottom in the air, to get the last 20 ml or so out!  I also used yoghurt internally for a while to redress any Ph imbalance in the vagina.  I made this myself from organic whole milk, with a couple of tablespoons from a small organic yoghurt and left it overnight in a thermos to set,  It is so delicious I now eat it every day.  I have heard you can make a starter with acidophalis (oh gosh how do you spell that!) capsule by shaking the powder out into warmed milk, but haven't tried this yet.  I wish you the best of luck.  Do persevere with the alternatives to antibiotics.

Best wishes to you too Sam.

It's quite disgusting that you now have kidney disease as a result of the medication you've been given . You are so young , and I can really sympathise with the pain you feel, I can honestly it is the worst kind and very different from any other . 

Xx

Hi Jensue,

Your alternative  ideas are really good. My only problem is that I am unable to use most of them, due to having gastritis every time I tried those type of things. The caprylic acid was working  amazing until I was in severe pain with gastritis. I have to take 40mg a day of omeprazole for that now. I have to self catheterise and feel like I'm losing the will to go on. I really am at a loss. I'm paying out a fortune to see a professor for help, but he just keeps me on the antibiotics (2 different ones) to keep a lid on it. My life is one of existing only. I've lost my joy in life!! Best wishes to you all. Xx

Thank you so much Julie for your kind reply. I used to think it was heart attacks and cancer that mainly killed people, but I know this will take me out soon. It feels like a waiting game. Waiting for when the antibiotics stop working. It's such a cruel life. I'm even riddled with candida, don't know which way to turn. 

Take care of yourself. 

Best wishes 

Sam xx

Sam ,

Could you ask the professor if you can see him on the nhs ? I've been told by a friend who works at a private hospital that you can ask your gp to refer you to a consultant of your choice, they just don't tell you that .  

Xx

And yet you hardly hear about UTI's , let alone the devastation and pain when the antibiotics stop helping . This forum has helped me so much , I really thought this only affected a few people yet now know there are many many sufferers.

I pray they find an alternative for you Sam , surely they must be investing in research to help this . Please take care , be kind to yourself and never give up Sam , if we all keep researching ourselves  one of us may come up with something that works for you xxx

Sam there are alternative products which help with candida but diet is very important.  You'll need to stay off all sugars including starch (ie wheat and grains) to get it under control.  I advise you to look at the website Good Health Naturally.  Robert gives free advice if you email him.

Hi can I ask if when you get infection symptoms your gp always sends a sample off? I've had this infection since May I've just finished a course of nitrofuritan ( my now sixth lot of antibiotics) and I still feel unwell and full of symptoms, the nurse at my surgery has asked for another sample to send off to the lab , I feel reluctant to do it unless there is something different they can give me , which there isn't . I wondered if you or anyone else has to do this , I know they've sent four samples to the lab since May and all have shown ecoli so I can't see anything different showing and I would welcome your opinion 

Hi Julie,

I found this Medical Article on treatment of Recurring UTI interview given by a specialist Urologist. Here is the link below, you may have to join the website to read it, but there is no fee to join.

 

Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

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HI Judy,

Please could you private message me the details the moderator removed from this site. 

Thanks so much. 

Sam x

Hi Judy,

Could you private message me the link as well. I have constant UTI with 5 different bacteria that show at different times and my body is destroyed by all the antibiotics that I have been taking for years.

Hi Denise and Sam,

I just sent you the link via private messages.

Hope you will find it helpful.

Thank you Judy

 

Hi Sam - I recommend you go and see a good naturopath.  I know an excellent one who works both in London and in the States.  He is an expert in gut bacteria.  I imagine I can't give his name and number here or the moderator will axe it!  I don't know how to send a private message.  Maybe someone can help me!  If you're interested and live in the UK I'll give you his details. He's not cheap (I think about £150 for a consultation - 1 hr or so, plus supplements but he's sorted our daughter's gut and energy levels which I never thought anyone would be able to do.)  Jenny.

Hi Judy could you send this to me too private message please , 

Thank you xx

Hi Julie,

How are things, I hope you had your appointment with your Urologist now.

 I want to share this new information I found in the blog of a Recurrent UTI sufferer who is now FREE of this ailment (lucky her!).

I am sending you a link to her blog but the most important information I got from it is the use of Biofilm disruptors, luckily a number of these enzymes we can get online without prescription. Apparently in Recurring UTI, the bacteria causing UTI develop biofilm to protect itself from antibiotics and other drugs so this Biofilm disruptor is needed for medicine to work. Here is the link to her blog 

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Hello Judy,

I have 4-5 different bacteria and live on antibiotics for years. I would be very grateful if you could private message me with this link. My email is..

Thank you,

Denise

 

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Hi , thank you for this, could you send me the link in a private message as the moderator has deleted it

I still haven't seen the urologist 😔I haven't even had an appointment yet . I've still got symptoms, I'm taking the d-mannose , triple strength cranberry tablets , urva urva .. you name it I'm taking it lol  I've dipped tested my urine and it's still showing the same . 

How are you xx

Hi Denise,

I sent a reply using your private patient email here.

judy

Thank you so much Judy, I am very grateful.

Hi Judy,

I've just private messaged you for the article you mentioned.

Many Thanks

Denise