D Mannose

[Deirdre]

So I see it actually it gets automatically censored. Why is that? I ask with the utmost sincerity and respect. I have received so much kind support from this board and I hope I have offered some to people as well. It just seems so strange that you literally can not post a name of a respected medical professional.
Sorry the original post was about D- mannose,

[mmarsh]

Regarding the D-Mannose, those of you who are using it, are you using the powdered, and are you using it without cranberry? I could not find it without cranberry in several health food stores, which is frustrating since I'm scared to try it with the cranberry for obvious reasons. Anyone tried Gotu Kola here? I tried it but flared.

[phoenixgirl]

I buy it from Amazon in the powdered form. No cranberry in it as far as I know.

[mmarsh]

Thank you Phoenix Girl! That is wonderful. I will try to find it. I noticed that you were just diagnosed last month. How are you doing in your healing?

[phoenixgirl]

You're welcome! I don't think we're allowed to say name brands on the board but if you do a search on Amazon for the dmannose powder you won't have any problem finding it. I can't really say how well the capsules work because I haven't tried it in that form but the powder is great. I take a teaspoon or so once or twice a day just for peace of mind. Also, 1/2 a teaspoon before sex and 1/2 teaspoon again right after to keep UTI's at bay. I've only had the one UTI that apparently triggered my IC but now I have no idea what my bladder's doing and I just don't want to take any chances. Also, it totally could be a coincidence but it seems like some days, the dmannose does help me go a little longer between pees.

[loraleena]

You can buy d-mannose at any natural food store or Whole Foods. I have some but have not used it for anything other than ligit uti. I wonder if I should give it a go. It says right on the container that it has a neutral ph.

[lfocht]

D-Mannose

Hi,
I was wondering if you are on meds would that have a bad interaction? I have the burning real bad and would love to try it. but am on so many meds wonder if that would be a problem.
Thanks,
Linda

[MrsMack1985]

Glad it helped someone else

Just wanted to say that I have been using D-mannose every day, 6grams a day, for about a year and a half now, and I credit it with completely curing my IC.

I firmly believe that many, (not saying all) cases of IC are low-grade UTI's that doctors fail to diagnose. After doing a lot of research, I was able to find out that there are different standards in lab testing for what constitutes a UTI, one for men, one for women. The male standard says that ANY colony forming units of bacteria in the sample would be considered a UTI, while the female one allows there to be up to 100,000 CFU's before the patient would be diagnosed as having a UTI.

Why? Well, obviously, male anatomy means it is much less likely that a man would or should have CFU's of bacteria in his urinary system, hence the strict standard for men. The female urinary system is far less likely to be bacteria free, and I understand that concept, and I am sure that doctors are trying to avoid false positives...but, this standard SERIOUSLY needs to be re-examined.

One huge reason, is that it only takes 8 hours for a few bacteria to multiply and become several million. Another, would be bacterial dormancy, a hibernation-like state that some bacteria can go into when attacked by antibiotics to "hide" from them. (Google it, you'll be shocked like I was.)

Unfortunately, doctors do not see shades of gray.

so, until all pee is tested as male pee, many women will continue to be misdiagnosed

The way that D-mannose works is that it is a simple sugar, which is not readily metabolized by you body, therefore it is expelled as waste in your urine. This type of sugar is the most wonderful type of food that bacteria can imagine, so while the d-mannose is inside your bladder, they cling to it, and are flushed out when you pee. For me, this is nothing short of a miracle.

So like I said, I have been taking it for 18 months now and no more horrible pain. Also, try as I might have when I began taking it, I cannot find any reason not to take the stuff. Like my family doctor told me; "It is just sugar...there is no possible way you can overdose on it, it can't interact with anything...if it works, use it."

Any questions at all PM me

[lfocht]

D Mannose

Gosh that is great. I did get a bottle of pills this weekend. The first day I took 3 pill and the second day 2 pills. They had the powder but I didn't get it. Do you think both should be taken? What does it taste like?
It would be so great to get rid of this IC. I have had it since 2002 and have a interstim in.
Thanks so much for your information, I guess I need to up the pills that I am taking. Do you drink a lot of water with them?
Thanks,
Linda

[ICNDonna]

Please don't count on d-mannose to cure interstitial cystitis. If your problem is bacteria, it can help, but there isn't a cure for IC yet. Maybe this year?

Donna

[MrsMack1985]

Wow miss Donna, it's kind of a shame that you are so dismissive of something that changed the life of this diagnosed IC patient. I will plainly tell anyone that I do not believe that ALL cases of IC are like mine, but knowing my own experience and how much this has helped me, I feel obligated to share this with others. And, clearly, I am not the only one who has had this experience.

To respond to you saying not to count on d-mannose, I would say do not count on the IC diet, or elmiron instills, or any of the doctor prescribed so called treatments that I tried that either did nothing for me or made me worse.

Miss Linda, I take both the powder form, and the pills, the powder is more effective in my opinion...it kind of tastes like, well, envelope glue to be honest! LOL! but I do take both, because the pills can be more convenient at times. Yes, always take it with at least 8oz of water. And no, it will not be an answer for everyone's IC, but you owe it to yourself to try. Best wishes.

[needsrelief]

MsMack1985

It is possible that you dont have IC. It is true that there is no "known cure" for IC. Maybe you do have a low grade infection. It may be hard to get rid. My gyn told me that she had some patients misdiagnosed with IC but who really ended had low grade UTI and she helped them get rid of it with long term anti-biotics. If you are not getting much help from your doctor. You may want to go to an infectious disease MD. Hopefully that is the case with you because IC never goes away hopefully there is a cure soon though. but an infection like what you may have can be treated. good luck.

[MrsMack1985]

I love being told this. "You may not have IC"

Ok. Well, I was diagnosed via cysto/hydro, which showed that I had hunner's ulcers, and inflammation, and was told at that time I had "mild" IC.

I tried the antibiotic solution, short term, long term, IV, you name it. The scary fact is, some bacteria are able to survive any kind of antibiotic you can throw at them. (again, look up bacterial dormancy, very interesting.)

Please consider the information in my above posts, and ask yourself again, how many cases of IC are like mine?

[Jinny Jean]

MrsMack

Hey! I am so glad D mannose is working for you and everyone else using it. I have often wanted to try it, but I am afraid of flaring. Basecly I put as little in my body as I can pretty much JUST elmiron and the IC diet and I do ok.

My question, did you ever have flares before your period or during, or if you ate something acid? I have flares before (sometimes and sometimes not) and then on on my period have NO symptoms... I just dont understand that if it WAS a bacterial infection of any sort hiding or not that it could do this? I would think that if there was any bacteria at all that I would always have symptoms? Does any of this make sense?

I have been tested many times for bacteria and like you have always come out negative... I have even been tested for Ureaplasma too. (Never heard back what the results were). My Dr. has now ordered tests that are being sent away to a lab that ( I hope) will test for low grade hiding bacteria.I start peeing in a cup on mon and do that for three consecutive days, then send it away to a special lab. Has anyone else had a test like this?

Jenn

[mommyof5]

Mrs.Mack, I am so happy you posted this. I have yeast issues along with uti almost every month. Frequently after intercourse.I was diagnosed with I.c. A year ago. Just ordered d mannose. Can't wait to see if it works for me. Very happy you are in remission.