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JoAnn
Rockhopper Penguin
Rockhopper Penguin


Joined: 14 Dec 2008

Posts: 616
User's local time:
2017 Nov 21 - 3:14 AM


Food Intolerances : gluten, milk casein, soy, yeast, eggs
Location: Utah

PostPosted: Sat Jan 30, 2010 12:02 pm    Post subject: Reply with quote

Hello everyone, just an update about where I am. When I posted last, I was in a flare and having initial success with the full dose of entocort. I continued with that but had good days and bad days. I went to my pcp on Jan 19 and she put me on 20 mg of prednisone for 5 days. I felt great on it and it immediately stopped the flare and I had picture perfect normans. She wants me to switch back to the full dose of entocort for 2 weeks along with the dmannose and then start tapering. I've been doing that for a week and things are still good, so I'll start tapering next weekend. She believes mc is caused by a nano bacteria and that I should always have entocort on hand for a flare. She gave me a years prescription. I talked to her about costs and mentioned the generic in Canada. She said to go ahead and order from Canada. I feel like she understands more about all this than my gi dr ever did and she is more willing to learn and try different approaches. She's also great with thyroid problems and always checks my t4 and t3. My prescription is a combination of both. I tried Armour at one time and had problems. She thought the ratio of t3 was probably too high for me
so she adjusts my t3 with a separate prescription. So, my goal is to taper off entocort and get back to where I was managing with dmannose. I will check in and let you know if all that works out. I couldn't get through this without all of you. Even though I don't have much time to post, I try to check in when I can and it is a comfort to know you are all there. I have felt confident in my pcp because she seems to go along with everything I've learned from all of you and supports it. A special thanks to you Tex and Gloria, JoAnn
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starfire
Moderator
Moderator


Joined: 25 May 2005

Posts: 5164
User's local time:
2017 Nov 21 - 5:14 AM


Food Intolerances : Gluten, Soy
Location: Pennsylvania

PostPosted: Sat Jan 30, 2010 12:06 pm    Post subject: Reply with quote

Wow, I'm impressed with you PCP. So glad you are better!! Very Happy

Love, Shirley
_________________
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
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Gloria
King Penguin
King Penguin


Joined: 07 Jul 2007

Posts: 4761
User's local time:
2017 Nov 21 - 4:14 AM


Food Intolerances : gluten, soy, casien, eggs, legumes, Pepto Bismol, all fruit except mango, all vegetables, tomatoes, onions, peppers, carrageenan, chicken, beef, orange roughy, cucumber, vinegar, chocolate, olives, buckwheat, millet, tapioca, sorghum, rice
Location: Illinois

PostPosted: Sat Jan 30, 2010 5:50 pm    Post subject: Reply with quote

Hi JoAnn,

I'm impressed with your PCP, too. It sound like she prescribes medication to your specific needs, not according to a medical book, like most GIs.

I'm a little concerned that the full dose of Entocort didn't completely calm things down for you like it did before. I wonder what that means? It's good that the Prednisone worked so quickly. I hope the second round with Entocort works better and that you can completely taper off of it and maintain with D-Mannose.

How much will it cost to get Entocort from Canada?

Gloria
_________________
You never know what you can do until you have to do it.
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30717
User's local time:
2017 Nov 21 - 4:14 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Sat Jan 30, 2010 8:42 pm    Post subject: Reply with quote

JoAnn,

Sometimes, we have to do what we have to do, to get MC under control. That was an appropriately light dose of Prednisone, and yet it did the trick. It's obvious your PCP knows what she's doing.

I agree, you have a doctor who seems to be incredibly responsive to your needs. Kudos to her.

I hope that the dosage-tapering phase of your treatment goes smoothly.

Love,
Tex
_________________
cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Zizzle
King Penguin
King Penguin


Joined: 22 Jul 2010

Posts: 3483
User's local time:
2017 Nov 21 - 5:14 AM


Food Intolerances : gluten, dairy, soy, sesame seeds, buckwheat, amaranth, walnuts, peppers, CORN!

PostPosted: Mon Oct 04, 2010 1:15 pm    Post subject: Reply with quote

Wow, this thread is very interesting. Are there any newer updates from folks using D-Mannose for MC? I would love to give it a try.
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ant
Rockhopper Penguin
Rockhopper Penguin


Joined: 28 Jun 2009

Posts: 1676
User's local time:
2017 Nov 21 - 6:14 PM


Food Intolerances : Gluten, Diary, Soy, Corn, Eggs, Peanuts and other legumes, nightshades (e.g. tomatoes and potatoes). DX Osteopenia. Suspect Celiac - Genes Type: DQ2/DQ8

PostPosted: Tue Oct 05, 2010 5:14 am    Post subject: Reply with quote

Dear Zizzle,

I stopped taking D-Mannose as my MBs got less frequent and firmer. I took it for about a month and do not take it now. It might have helped at that stage (and still might). But, since I was taking in together with the diet and Entocort it is difficult to tell if it was effective or improvement was coincidental.

Sorry to be inconclusive on this

Best, ant
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JoAnn
Rockhopper Penguin
Rockhopper Penguin


Joined: 14 Dec 2008

Posts: 616
User's local time:
2017 Nov 21 - 3:14 AM


Food Intolerances : gluten, milk casein, soy, yeast, eggs
Location: Utah

PostPosted: Wed Oct 06, 2010 6:54 pm    Post subject: Reply with quote

Hi Zizzle, I've had a very busy week and haven't had time to post much. I'm the one who started this thread. I've been off entocort for 3 and a half months now. I do know that Dmannose helped me a great deal during my healing process. I reached a point where I didn't need it anymore. I don't know why it helped me so much, but I know it did. I think I went off from it last spring as I tapered off entocort. Last fall, I was struggling to taper off the entocort and the Dmannose somehow pushed me over the hump and I used it exclusively without entocort. As you read on this thread, I had a bad flare last Dec/Jan and basically went back to square one. I think it's worth a try for anyone working their way through all this and if I ever get in a flare again, I will definitely use it again. JoAnn
_________________
Courage is being scared to death, but saddling up anyway. John Wayne
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Deb
Rockhopper Penguin
Rockhopper Penguin
unknown IP

Joined: 20 Nov 2010

Posts: 1548
User's local time:
2017 Nov 21 - 4:14 AM


Food Intolerances : Gluten, still determining others
Location: Minnesota

PostPosted: Thu Oct 27, 2011 10:32 am    Post subject: Reply with quote

I'm resurrecting this thread with some questions. My pregnant daughter was just informed she's got a urinary tract infection but she is resistant to the antibiotics her doctor is suggesting. I'm finding mixed messages on the
safety of D-Mannose while pregnant but does anyone have any real knowledge about it. I'm sure I can also find mixed messages on the safety of the anitbiotics. Confused
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30717
User's local time:
2017 Nov 21 - 4:14 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Thu Oct 27, 2011 12:08 pm    Post subject: Reply with quote

Deb,

I'll admit that I've never researched the safety of D-mannose during pregnancy, (in fact, I'd be very surprised if any valid scientific studies have ever been done on this specific topic), but frankly, I don't see any reason why it would be an issue. In essence, D-mannose is nothing but an indigestible sugar that occurs naturally in cranberries, peaches, apples, certain berries, and a few other plants. It almost surely had to be involved during the development of the human digestive system. So little of it is metabolized by the digestive system, that it shouldn't interfere with blood sugar regulation.

Here's what the University of Maryland Medical Center says about Cranberry juice and pregnancy:

Quote:
Cranberry juice is generally considered safe with no serious side effects, even for pregnant women. Cranberry supplements are considered safe for most people, although pregnant and breastfeeding women should ask their doctor before taking any supplement, including cranberry.


http://www.umm.edu/altmed/articles/cranberry-000235.htm

D-mannose is much better at preventing a UTI than treating one, but the fact that it can effectively prevent additional bacteria from attaching, is bound to be beneficial, even if a UTI already exists. No drug, (even a natural one), is totally without risk, but IMO, the risk with a naturally occurring sugar is surely lower than the risk connected with the use of conventional antibiotics. (Of course, I'm no doctor).

Tex
_________________
cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Deb
Rockhopper Penguin
Rockhopper Penguin
unknown IP

Joined: 20 Nov 2010

Posts: 1548
User's local time:
2017 Nov 21 - 4:14 AM


Food Intolerances : Gluten, still determining others
Location: Minnesota

PostPosted: Thu Oct 27, 2011 12:22 pm    Post subject: Reply with quote

Thanks, Tex. That kind of confirms my feelings (and DD is aware we aren't doctors thumbs up )
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Erica P-G
Rockhopper Penguin
Rockhopper Penguin


Joined: 08 Mar 2015

Posts: 1259
User's local time:
2017 Nov 21 - 2:14 AM


Food Intolerances : Gluten, Dairy, Eggs, Soy, Tuna, Beef, Oat, Almonds, Walnuts
Location: WA State

PostPosted: Wed Sep 21, 2016 5:26 pm    Post subject: Reply with quote

I found this statement to be very interesting Tex...

Quote:
Some of you may recall that for several years, Polly and I have suspected the existence of an unknown pathogen or toxic agent in the lumen, which facilitates the symptoms of MC. I believe that Dr. Fine first suspected this possibility, and pretty strong evidence that it may be true, is found in the fact that if the fecal stream is diverted away from the colon, (by means of an ileostomy, for example), the histology of the colon will return to normal.

http://www.ncbi.nlm.nih.gov/pubmed/7615194?dopt=Abstract


I had to have a round of antibiody and ordered the D-mannose, I'm taking 500mg once a day, decided to not take it one day and noticed my urine clouded back up from not taking it....I have learned to wipe accordingly now and am hoping this is just another learning experience in the life of MC.

Glad that this site talks about EVERYTHING Very Happy

Love
Erica
_________________
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30717
User's local time:
2017 Nov 21 - 4:14 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Wed Sep 21, 2016 7:24 pm    Post subject: Reply with quote

Hi Erica,

Yep, there aren't many topics that haven't been discussed somewhere on this site at one time or another. Laughing

Regarding that quote above, while it's true that the colon inflammation will fade away after an ileostomy, unfortunately the claim that an ileostomy will always stop the D simply is not true. In many cases it won't, because the inflammation is actually generated farther upstream (in the small intestine). We had one member who decided to try an ileostomy because she wasn't able to stop the D by diet changes. But the surgery didn't stop the D, either, unfortunately.

And I can tell you from experience that D with an ileostomy can still be rough, because those pouches don't hold enough to handle the volume that can be generated with an all-out MC flare. In my case I have more food sensitivities now than I did before the ileostomy, so I have to be just as careful with my diet now, plus avoiding additional foods.

D-mannose is good stuff, IMO.

Love,
Tex
_________________
cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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dhouts
Adélie Penguin
Adélie Penguin
United States

Joined: 07 May 2016

Posts: 125
User's local time:
2017 Nov 21 - 2:14 AM



Location: California

PostPosted: Thu Sep 22, 2016 7:05 am    Post subject: Reply with quote

Question, D-mannose can help with an MC flare? Did I read that correctly?
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Diana
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30717
User's local time:
2017 Nov 21 - 4:14 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Thu Sep 22, 2016 9:30 am    Post subject: Reply with quote

Hi Diana,

Jo Ann seemed to respond to it (that is, she felt that it helped to control her MC symptoms), but others here have had mixed results. There's no question that it's extremely helpful for preventing and even controlling UTIs in most cases, but the jury is still out on whether or not it's helpful for MC.

Tex
_________________
cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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dhouts
Adélie Penguin
Adélie Penguin
United States

Joined: 07 May 2016

Posts: 125
User's local time:
2017 Nov 21 - 2:14 AM



Location: California

PostPosted: Thu Sep 22, 2016 8:38 pm    Post subject: Reply with quote

Thanks, Tex. I had read about the great results for UTIs and since I'm a frequent flyer in that department, I've been thinking about trying it. Then reading that it might help with MC is like killing two birds with one stone. Gonna give it a try.
_________________
Diana
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