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

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 there,

I saw your comments on here and am in mainly the same situation as yourself. You are so right about Urodynamics. I've had it twice now, all for nothing! How are things now for you?

Regards,

Sam

Hi there,

I saw your comments on here and am in mainly the same situation as yourself. You are so right about Urodynamics. I've had it twice now, all for nothing! How are things now for you?

Regards,

Sam

I replied this in another comment about the initial question but not sure if you saw it...

I've had many issues with Utis over the years but last year It was horrible. I had a UTI every 6 weeks....sometimes it had some e.coli but my urologist tested me for ureaplasma and it came back positive. She said it's usually found on the skin andwhen it gets into the bladder it's very hard to get rid of. I am allergic to sulfa drugs so she put me on a month of Erythromycin and it sucked but I haven't had any problems since! Have your doctor check for mycoplasma or eureaplasma....it's a specific test. Hope this helps!! Good luck!!

What was your test for ureaplasma and mycoplasma? I know there's different ways. I had a vaginal wet mount when I was being tested for candida. Would it have shown up there or is a urethral swab needed? I have a similar situation here. My cystoscopy came out clean but constant uti's all in a year and a half. My doctor still diagnosed me with interstitial cystitis regardless.

I believe she tested for both.It was just through a simple urine test. But she was very adamant on me going to her and not other docs in her practice because she wanted to make sure the right tests were done. I would tell your doc to do a more specific test for the "plasmas" and not just a routine urinalysis. It has literally changed my life. I was so miserable and tired of going to doctors and being on meds. This bacteria is tricky to get rid of, so if it's positive be prepared for you AND YOUR SEXUAL PARTNER to both be treated.Usually a month of doxycycline....I'm allergic so she used erythromycin on me. I do still do D mannose as a preventative on occasion.Keep me updated! I hope this helps!!

Thank you! I'm going to ask my urologist next appointment. She diagnosed me with interstitial cystitis but my cystoscopy came out clean and I'm just not ready to accept my diagnosis until further testing is done. It all started with a bunch of uti's and burning that just doesn't go away despite antibiotics. I just started dmannose every few hours a few days ago. I messed up my nighttime dosage the second night because I never woke up but have been feeling better. My urine looks clear and I think it saved me from having a uti after sex. How many days would you recommend the every few hours waterfall dmannose vs just a few times a day. Some places say 5 days and some say 3 months. I just hope my body doesn't get too dependent on the extra dmannose. Before I was taking 2 to 3 doses a day.

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? 

I am in the same situation and wondering if you got any resolve in yours?  I continue to get an infection after completing a round of antibiotics.  The doctor does a culture to find the right one to kill the bacteria.  Then the infection returns after a few days.  Now I'm on Cipro after finishing Bactrim.  He tried Bactrim again but it didn't work.  I have been on this awful cycle for a long time and the urologist doesn't seems concerned that antibiotics eventually won't work.  Dmannose everyday worked for five months. I mixed the powder and water in a glass 5-6 times a day and down to 3 times but I agree that there must be deeply embedded bacteria in my bladder that I can't get rid of.  And that is something my doctors don't talk about?  My doctor says he will send me to a specialist in San Francisco and I'm ready !  I'll post results after I go.

There seems to be many of us who are getting repeated infection and antibiotics are just not working 😔I'm hoping the urologist can help when I get to see him, I'm certainly going to mention the other infections that have been highlighted as you wonder if they're the culprit and just not being picked up. 

I'm in the same position sadly. I'm on constant antibiotics for 2 years. My life is under threat, as I'm allergic to nearly all the antibiotics now. It's a nightmare life!!

Good luck to you all. X

Hey Sam, 

Keep going,don't give up. Life is hard and not easy I know. 

I knew that I had to take the situation on my hands. Try to test some things from others. Don't be rested on doctors if you cannot find relieve.I learned it the hard way, I  made my self experiment until to find what is bringing a bit relieve. Just don't give up. We are here for you. You can write me if you want personal advice.

Please God Sam they will find something to beat this , like Alex has said please don't give up , our bodies are resilient and will try to fight this .

I've been reading today about apple vinegar cider that kills bacteria especially ecoli ,  I'm going to try it , it can't hurt . If we all share our ideas as we are  one may work .

Take care Sam , please keep fighting  xx

Hi Alex and Julie,

Thank you so much for your kind words. I will try to keep fighting on. I have to self catheterise too and that gets me down, so painful! If everyone on these forums that are suffering got together with a petition to the government to help people like us, they might find a cure. As all you ladies know bladder and urethra pain in horrendous, nothing compares. Cider vinegar is good, but I cannot take it as I have ulceration sadly.  Good garlic tablets are also good I've been told. I think some things work for different people. I'm also using Vagifem, as going into the change doesn't help.  I wish you all the best and feel your pain. 

Xx

You're so right , I don't think there's any pain like it . It's horrendous. 

My doctor has also prescribed oestrogen pesseries , she said they are such a minute amount of oestrogen that there is not the same risk of tablets . She said they may help as changes from the menopause can aggravate the bladder . I've only been taking them for a couple of weeks so I'll let you know if it makes a difference. Maybe that's what we should do , get a petition started as there are a lot of us suffering.

I fully understand how you feel about catheterisation as they wanted me to do it, but I was reluctant to . 

Thinking of you and praying we all find relief 

Xx

Hi Julie,

I have recurring UTI for more than 30 years now, but stopped the need for antibiotics several years ago. I use uva ursi complex combined with yarrow complex  twice daily( both Vogel products easily found online). At times when it does not work I found that 1 teaspoon Cream of Tartar in a glass of water actually does! Sadly I cannot take Cream of Tartar regularly because it gives me a bad stomach but I read from other forums that many UTI sufferers have found relief by using it regularly. 

Hope you feel better soon!

 

Hi Lina,

I found this post on a cure for repeated UTI. I will try it myself. (I have UTI for 30+ years now but I found herbal remedies Uva Ursi complex and Yarrow complex Daily combined so I did not need to use antibiotics for several years now. But my UTI is still there so I hope this one will work.) Here is the post:

"Mum is nearly 94 and after at least 4 years of urinary infections which had a dire effect on her both health wise and more importantly mentally, we found a cure just a few months ago and wanted to post it in the hope it will help many others. 

Mum would have an infection at least every month and has had more antibiotics than I care to think about. When she had one she would ask for the toilet dozens of times of day and night, then go completely mental, be very verbally aggressive and be very distressed and confused. 

We just happened to check online and read that washing her genitals only with warm water and baking soda (as used in cooking), kills any bacteria that cause the infections and we have not had one since which has made a huge difference to our lives, despite her other health problems. I only wish we'd known this years ago. Hopefully this will help others "

I really hope it will work permanently for us!

 

Thanks for this helpful info. Could you say approx how much baking soda you use to proportion of water?

thank you

Hi Judy,

This is her post about the amount she used for her mother.

"I'm so glad people find this useful. We just put about a teaspoon into a couple of pints of warm water, just enough to wash the area. Because mum used to wipe herself back to front and because she sits still most of the day it allowed bacteria to grow which started the water infections. Since only washing the area in this solution we have not had any infections at all. 

I'm not from the States and should have said baking powder not baking soda. If I can find the original link we found I will post it here so that you can get the details from the same place we did. It has made such a difference to us and i wanted to share it with anyone else who might be having to deal with this awful complication on top of everything else."

I personally used a stronger mix earlier which seemed fine so far (fingers crossed) but this mix above was the one that worked for her mother.

Thank you so much for this , I'll give it a try . There are some brilliant suggestions on this forum, hopefully they'll help a lot of people . Xx

Hi...I've been suffering 2 years.  I've been going to a man who uses a Rife machine.  After 8 months I finally felt better for 3-4 months!  But then I took antibiotics for a bad tooth and bam!  It's all back.  I can't even sleep I'm peeing every 20 minutes, bladder pain...I started taking D-mannose seemed to be working for a couple days.  And now it's not.  Did you cure yourself?  What happened?

This is very useful but a little clarification would be helpful. Baking Soda is just sodium bicarbonate which is typically what people are advised to add to water and drink. You say to use Baking Powder but that has sodium bicarbonate and disodium phosphate in it. Can you clarify if it's meant to be baking soda or baking powder, as I'm thinking it's meant to be the soda?

I had a bladder sling put in two years ago. Ever since I have had recurrent utis. When they culture the urine, sometimes it’s e.coli but other times, like right now, it’s staph epidermis and sensitive to Bactria. I had the script filled but am trying to get rid of it naturally. I’m so tired of it! I’m not retaining urine they said. Passed the bladder scan. I got some D-Mannose powder to take and see if I can beat it. I’m also using essential oils.