Able to say D-******* now on the boards

[massagedoula]

Hello everyone,

I just wanted to tell you that I wrote to Jill and asked her to lift the censorship ban on the product D-*******. I explained that those of us who use/have used it were not doing so to "cure" our IC, but to eliminate any low-grade or active E.COLI infection that may be secondarily irritating out bladders.

For anyone who was ever thinking about this product, please know that it is not a cure for IC as such, but it greatly can help eliminate E.COLI from the bladder, which can help reduce symptoms if you do have an infection.

I just wanted to write this on the boards, because many of us were speaking of this product in a secret "code" for the last few weeks.

[massagedoula]

OOps...we were supposed to be able to write it. I have to write to her again and tell her that it is still getting starred out!

[ese]

OK, I'm dumb and don't get it. What is the D stuff? Can you spell it backwards or something? Anything that might work, I'm interested in learning about. :)

[massagedoula]

She said that we would be able to type it now w/o censoring. I will try again.

D M A N N O S E

[massagedoula]

If you write it with a space in between the letters it works but if you write it normal (d-*******) it still gets censored. I don't know why, Jill said that we can write it now...

[emilyrose197377]

what is this stuff. I know when I eat blueberries it helps my bladder symptoms some.

Take care
Kim

[ICNDonna]

Just remember that if you have a problem with sugar, these are definitely not a good option since the primary ingredient is --- sugar.

Donna

[massagedoula]

Donna-
ICLori is correct about it not being metabolized like sugar. That was one question that I asked my naturopathic doctor too, because, while I am not diabetic, my sugar reading in my latest blood work was on the high side (which she thought might be from the glucosamin sulfate I am taking!) She said that the body does not absorb or break down M A N N O S E which is exactly how it can work in the urine. Because it is not brken down earlier in the body, by the time it gets to your urine, it is still whole. Then the M A N N O S E receptors on the E.Coli choose to adhere to the sugar molecule and not the bladder lining, (there are some good photos of this) and then when you urinate you urinate the whole sugar molecule out PLUS the e.coli that was adhering to it. Kinda like flypaper!

I agree with ICLori, that the ICN store should look into carrying this (not as a treatment for IC, but under the UTI heading) I may have mentioned it before, but even my local pharmacy carries it! It had just started being comercially available in the US in the last few years. I know when I used to live in Europe I would see it on the shelves, so I assume that it was available there for longer.

I know that the ICN did not like this product in the past, because of feeling like it was marketed as a cure for IC. I want to say again that none of us who use it think that it is a cure for IC, but it is a very good way to elminate e.coli from the bladder. I still have IC symptoms, but now I don't have the low-grade e.coli that I feel was in m bladder too, in an amount that no doctor would ever treat with antibiotics because it was less than 10,000, and the medical criteria for infection is greater than 100,000. Doctors need to realize that those people with already damaged bladders can be very affected by even low amounts of bacteria.

[ICNDonna]

Actually, diabetics and those with hypoglycemia (me) do have to limit not only the granulated sugar that we use to sweeten things, but also must limit fruit and fruit juices, extracts, etc., because they do have sugar --- and sugar is sugar.

I urge anyone, especially those with diabetes or hypoglycemia, to discuss sugar pills with a physician before taking them.

Donna

[massagedoula]

The molecule is not like sugar/fructose/sucrose, etc...that diabetics have to watch for. It is barely metabolized. The molecule passes unchanged through the body and out the urine, with a very small amount to be actually absorbed.
You can do searches on Google for M A N N O S E and research this if you are interested.

But, like Donna says, if anyone is diabetic or hypogycemic and concerned about this product, by all means, please discuss it with your doctor, or decide not to try it at all. It is like any other product or medicine, some people don't feel that it is right for them, and no-one is trying to make anyone try this. All we want is for those of us who take it for UTI's (again, it is not a cure for IC) to be able to talk about it freely.

[schnauzer lvr]

Very interesting discussion re: d *******. Is it ok to ask where it can be purchased? I Googled it and there are so many places offering it and who knows which is the best? Anybody know? Also- is it ok to take on a daily basis as a preventative?

I also saw on the ICN board Twinlab Cran 1 Daily caps. It seems to contain cranberry and blueberry. Do these cause burning or are they ok for ic folks to take on a daily basis as well? I use to drink cranberry juice everyday but now know that it is a no no for sure.

Would love to hear some feedback. Thanks a lot. ;)

[ICNDonna]

Please don't post sites where any product is being sold. In order to prevent our boards from being advertising and not support, and in order to be fair, no advertising is permitted here.

Donna

[massagedoula]

I was out and just got back to checking the boards. Don't worry Donna, I know the rules and I think that it is a great thing for the ICN to not allow advertising on the boards.

As a matter of fact, what I would reply to the question about which brands of this product are best is that no matter where you get it from, as long as it is 100% pure and not mixed with any fillers, it is all the same stuff. It is just the active ingredient of cranberries/blueberries, though I believe that they might also get it from birch bark in some cases.

Also, I think that the ICN would not carry anything that they know to be harmful for the IC bladder, so the cranberry stuff you saw at the store shouldn't be bad. I never actually saw it, but it doesn't sound like the ICN to sell a product that is not safe for us.

[schnauzer lvr]

Thanks- that's why I wanted to know if it is ok to ask where to get it. I am not all that familiar with the rules and certainly would want to follow them. I know that we have to be careful to not get into advertising- makes perfect sense and I appreciate it.

Just wanted to know if anyone had help w/ the cranberry/blueberry tablets and like everything else it is an individual matter and has to be tried that way.

I do appreciate all of the feedback- sorry if I set any alarms off- I truly did not mean to. Thanks for setting the record straight.

[massagedoula]

I am sorry that I ever started this post. I did so because I believed that Jill had given me permission to talk about it on the boards. Now for some reason ICLori is leaving the ICN because of some misunderstanding about this post. I feel horrible and all I wanted to do from this post is to be able to freely talk about something that has helped a few of us get rid of UTIs, and I thought that it was OK to talk about it now.
I love the ICN and I don't want to cause any problems, and I surely don't want ICLori to leave the boards. One of the reasons that I love the ICN is that we can share the things that we try and that work or don't work for our bladders, and I just wanted to do this, which is why I asked Jill if we could talk about it now. I am sorry.
-Emily

PS. I now see that all of ICLori's posts have been deleted from this topic. I don't know if she did it or if someone else did, but I really don't see why this has to get to this level. I will never mention this product again, if that is what the ICN wants. I feel really sad about what is happening.

[emilyrose197377]

I feel sad about it also Emily I don't feel that you did nothing wrong and should not be apologizing for anything you and Lori were not advertising anything. You were Just suggesting something that works for you that Might work for other Icers and I do not see anything wrong with that. I for one do not want Ic lori to leave the ICn she has has been very supportive and helpful to me whenever I had a question . You and lori was only trying to help others and you should not feel guilty for that.

Take Care
Kim

[ICNDonna]

Lori deleted her own messages. Anyone who posts can do so when they wish.

It's fine if you discuss this subject on this board as long as the discussion doesn't include direct medical advice. It's fine to report that you have discussed it with your physician and he feels it's a good option for you, but it's not okay to give assurance that it's safe for everyone --- it may be, but it's always a good idea to discuss alternative medicines with your personal medical care provider.

And if it's working for you, I think that's great. We need to hear success stories. Like everything else, what works for you or for me might not work for everyone.

You have not done anything wrong.

Donna

[ICLori]

Although I deleted most of the messages, one was deleted by the ICN moderators. I deleted the other posts because I thought they were in the same vein as the one that was deleted and therefore probably offensive.

Blessings, Lori

[ICNJess]

Emily,

Please don't give up on posting. If you find something that works for you, that's great--IC is just not an easy disease to find healing in. What works for me may not work for you, etc. etc. I think it's great that you want to reach out and help others with what helps you. We're all in the same big IC boat together. :)

Hugs,
Jess

[ellienor]

Just go to any health food store and get it.
I am Soooooo glad now we can say it.
That sugar has helped me ALOT ALOT ALOT ALOT ALOT ALOT ALOT ALOT ALOT. :woohoo:

I dont know or care how or why.
It is a naturally occuring sugar found in many foods.
I took 5 tabs the first day, spread out and in 12 hours i was 80% better.
Somehow it must sooth the bladder. Maybe blueberrys have it also, and many have said they help them...

[ellienor]

Dad gum it,, is it ok to tell people the name of the sugar or not?
I dont want to be in hot water, and i may get there.

[ellienor]

You get it at any health food store.

[emilyrose197377]

I find that Pom 100% bleuberry Juice and blueberries helps my bladder feel some what better that has helped more than anything else.

Take Care
Kim

[emilyrose197377]

I don't quite understand if emily ask Jill and Jill said it was ok to mention it on the board why can't people spell it out on the board.

Take Care
Kim

[Leslye]

I am STILL trying to figure out what the D-WORD is!?LOL:)

[massagedoula]

I want to just say to everyone that I am sorry that this all has gotten so confusing. I did write to Jill and as far as I got from her reply, I thought that we were allowed to write the name on the boards. Now it has gotten so confusing because the ICN still obviously does not like us talking about it and now ICLORI might have left the boards forever because she got so frustrated about this thing....Yes it helped me and her, and other people, but I still want to say that we don't think that is cures IC, just that is helps with the low-grade or hidden UTI problems that some IC patients also suffer from, and when that UTI is eliminated, it makes us feel a whole lot better, but still not totally better.

I don't know why we can't write the name on the boards. I must have misunderstood Jill.

I will say though, that if people do want to know the name of the product, they can email me at transientcat@yahoo.com. I hope that is OK with the ICN, if not, please let me know and I will delete my email from this post.
-Emily

[Annie2]

I believe, thanks to Emily and Lori's efforts, we are allowed to say it but the program still thinks it is a nasty word and ***s it out. To write it here, you have to leave an extra space between each letter to avoid being automatically censored. The word is D - M a n n o s e. :wink:

To Emily and Lori, I want to say thank you! Please stay with us and keep on posting! We need and appreciate both of you so much!!!!! Neither of you did anything objectionable. You were merely exchanging information and carefully documenting the reasons for your views. As ICers, we run into closed minds far too often. There are so very many controversies when it comes to IC. Having a forum where we can discuss them is valuable to all of us. Yes, we have to be mindful of the legal pitfalls that could be problematic. And, yes, we sometimes do not agree with one another. Lori, several times during past disagreements you have been the one to step in, mediate and get our discussions back on track. It is obvious to me you keep an open mind and listen carefully to all sides of an issue. Many times I have felt strongly about issues being discussed but your posts have encouraged me to take a second look and see that issue from another point view. Your contributions to this forum and to the IC community are invaluable. Your willingness to undergo the Bion trial and careful description of your experience not only benefits all of us here, but also will help those who later will be walking this path.

BIG :grouphug:s to both of you! I know I am not alone in treasuring your presence here!

Annie