Re: Re: Probiotics in PSC pilot study

[Guest guest]

Hey Jon,

What is the type of probiotic you use? I was using a New Chapter 2x per day when

living in Maine. They do not have that brand at the Co-op in Duluth so I am just

using a Whole Foods Brand. I think I feel better when I take a probiotic but I

also supplement that with eating Kefir and also a " Green Food " Supplement too.

nne

Duluth, Minnesota

UC 2002, PSC 2008

>

> Subject: Re: Probiotics in PSC pilot study

> To:

> Date: Monday, August 11, 2008, 6:35 PM

> The study says it doesn't help, but they only evaluated

> clinical

> symptoms for a period of a month. Maybe that's enough

> time, but it

> seems to me that if the goal is life extension then the

> real benefit

> might take longer to show itself. Just a thought.

>

> I've been on a really good probiotic for a few years

> now; it totally

> cleared up my colitis so any benefit for the PSC is just

> gravy though,

> for the record, I can't say I've seen any

> improvement on that front.

>

>

> >

> >

> > I'm sorry if this has already been posted, I'm

> having a bit of

> trouble

> > keeping with up posts.

> >

> > IBD in 90% of PSC patients, suggesting that substances

> originating

> > from the inflamed gut may damage the biliary

> tree......

> >

> > http://www.ncbi.nlm.nih.gov/pubmed/18679073

> >

> > Barb in Texas

> >

[Guest guest]

Hi nne,

This is my first time writing to the group since I joined in May. I’ve been following the daily messages and appreciate the warmth and care emanating from this wonderful group. I can see how everyone rallies to help and can find no words to describe how good that makes me feel. If I haven’t written, it is because I haven’t had anything to share. When it comes to probiotics though, I’ve had some experience I can share with you. Over twenty-five years ago, before probiotics meant anything to the general public, my family was involved in probiotics research. Soon after my son was diagnosed with IBD, we increased our consumption of probiotics through special probiotics-containing yogurt, and several years later, following the advice of a New-York GI physician, we started to have the probiotic Culturelle which we learned was one of the brands used in probiotic research (larger bacteria concentration than in yogurt). We attended several probiotics conferences, and found out that Culturelle and VSL were the two probiotics most used by researchers. From my modest experience, I hear that probiotics worked with some IBD users and did nothing to others. I can tell you that Culturelle definitely helps my son with IBD. He increases the dosage when he feels any stomach issue and multiplies the dosage if bleeding. We see the results right away. I, too, believe in the long-term benefits of probiotics. If perhaps IBD is caused by or results in an imbalance of colonic bacteria and PSC is connected to IBD, probiotics may be re-creating the needed balance. It’s all hypothetical, I know, but it has worked for us. And from my readings, except for acute pancreatitis, probiotics has had no undesirable side-effects. The problem with probiotics is that these bacteria are easily destroyed during production, packaging, and during their passage into the intestines. That is why we wanted to maximize our chances of getting a product that was most probably dependable since it was used regularly in research. I do not know whether the two products are still the ones used in research. They were until recently (I haven’t checked but will share any information I get).

Good health to all.

[Guest guest]

,Thank you very much for your experiences with Culturelle. It is good to have the standing of at least someone. It is very difficult to understand or even figure out what type of probiotics to take with all of the options. I have just been taking DDS Probiotics which the Whole Foods Co-op supplies. I think I will give the Culturelle a try since you have had some success with it. Did you need to refrigerate and is it live at the time of use?Thank you again,nnenne

Duluth, Minnesota

UC 2002, PSC 2008Subject: Re: Re: Probiotics in PSC pilot studyTo: " " < >Date: Thursday, August 14, 2008, 1:13 PM

Hi nne,

This is my first time writing to the group since I joined in May. I¢ve been following the daily messages and appreciate the warmth and care emanating from this wonderful group. I can see how everyone rallies to help and can find no words to describe how good that makes me feel. If I haven¢t written, it is because I haven¢t had anything to share. When it comes to probiotics though, I¢ve had some experience I can share with you. Over twenty-five years ago, before probiotics meant anything to the general public, my family was involved in probiotics research.. Soon after my son was diagnosed with IBD, we increased our consumption of probiotics through special probiotics-containi ng yogurt, and several years later, following the advice of a New-York GI physician, we started to have the probiotic Culturelle which we learned was one of the brands used in probiotic research (larger bacteria concentration than in

yogurt). We attended several probiotics conferences, and found out that Culturelle and VSL were the two probiotics most used by researchers. From my modest experience, I hear that probiotics worked with some IBD users and did nothing to others. I can tell you that Culturelle definitely helps my son with IBD. He increases the dosage when he feels any stomach issue and multiplies the dosage if bleeding. We see the results right away. I, too, believe in the long-term benefits of probiotics. If perhaps IBD is caused by or results in an imbalance of colonic bacteria and PSC is connected to IBD, probiotics may be re-creating the needed balance. It¢s all hypothetical, I know, but it has worked for us. And from my readings, except for acute pancreatitis, probiotics has had no undesirable side-effects. The problem with probiotics is that these bacteria are easily destroyed during production,

packaging, and during their passage into the intestines. That is why we wanted to maximize our chances of getting a product that was most probably dependable since it was used regularly in research. I do not know whether the two products are still the ones used in research. They were until recently (I haven¢t checked but will share any information I get).

Good health to all.

[Guest guest]

,Thank you very much for your experiences with Culturelle. It is good to have the standing of at least someone. It is very difficult to understand or even figure out what type of probiotics to take with all of the options. I have just been taking DDS Probiotics which the Whole Foods Co-op supplies. I think I will give the Culturelle a try since you have had some success with it. Did you need to refrigerate and is it live at the time of use?Thank you again,nnenne

Duluth, Minnesota

UC 2002, PSC 2008Subject: Re: Re: Probiotics in PSC pilot studyTo: " " < >Date: Thursday, August 14, 2008, 1:13 PM

Hi nne,

This is my first time writing to the group since I joined in May. I¢ve been following the daily messages and appreciate the warmth and care emanating from this wonderful group. I can see how everyone rallies to help and can find no words to describe how good that makes me feel. If I haven¢t written, it is because I haven¢t had anything to share. When it comes to probiotics though, I¢ve had some experience I can share with you. Over twenty-five years ago, before probiotics meant anything to the general public, my family was involved in probiotics research.. Soon after my son was diagnosed with IBD, we increased our consumption of probiotics through special probiotics-containi ng yogurt, and several years later, following the advice of a New-York GI physician, we started to have the probiotic Culturelle which we learned was one of the brands used in probiotic research (larger bacteria concentration than in

yogurt). We attended several probiotics conferences, and found out that Culturelle and VSL were the two probiotics most used by researchers. From my modest experience, I hear that probiotics worked with some IBD users and did nothing to others. I can tell you that Culturelle definitely helps my son with IBD. He increases the dosage when he feels any stomach issue and multiplies the dosage if bleeding. We see the results right away. I, too, believe in the long-term benefits of probiotics. If perhaps IBD is caused by or results in an imbalance of colonic bacteria and PSC is connected to IBD, probiotics may be re-creating the needed balance. It¢s all hypothetical, I know, but it has worked for us. And from my readings, except for acute pancreatitis, probiotics has had no undesirable side-effects. The problem with probiotics is that these bacteria are easily destroyed during production,

packaging, and during their passage into the intestines. That is why we wanted to maximize our chances of getting a product that was most probably dependable since it was used regularly in research. I do not know whether the two products are still the ones used in research. They were until recently (I haven¢t checked but will share any information I get).

Good health to all.

[Guest guest]

Hi nne,

When I first started buying Culturelle around ten years ago, it was being sold refrigerated, so I continued to do so. Now I see the product being sold either unrefrigerated on drugstore shelves or refrigerated in alternative medicine stores. The company itself used to send it to us in mini-coolers. I refrigerate it just for that reason though they assured me it would be okay not to. When traveling, I just make sure not to pack it in checked luggage to prevent it from extreme temperatures. And yes, the bacteria are alive and are meant to survive as they move through the digestive system. How did you decide to start taking probiotics?

I wish you good health and all the best.

,

Thank you very much for your experiences with Culturelle. It is good to have the standing of at least someone. It is very difficult to understand or even figure out what type of probiotics to take with all of the options. I have just been taking DDS Probiotics which the Whole Foods Co-op supplies. I think I will give the Culturelle a try since you have had some success with it.

Did you need to refrigerate and is it live at the time of use?

Thank you again,

nne

nne

Duluth, Minnesota

UC 2002, PSC 2008

Subject: Re: Re: Probiotics in PSC pilot study

To: " " < >

Date: Thursday, August 14, 2008, 1:13 PM

Hi nne,

This is my first time writing to the group since I joined in May. I’ve been following the daily messages and appreciate the warmth and care emanating from this wonderful group. I can see how everyone rallies to help and can find no words to describe how good that makes me feel. If I haven’t written, it is because I haven’t had anything to share. When it comes to probiotics though, I’ve had some experience I can share with you. Over twenty-five years ago, before probiotics meant anything to the general public, my family was involved in probiotics research.. Soon after my son was diagnosed with IBD, we increased our consumption of probiotics through special probiotics-containi ng yogurt, and several years later, following the advice of a New-York GI physician, we started to have the probiotic Culturelle which we learned was one of the brands used in probiotic research (larger bacteria concentration than in yogurt). We attended several probiotics conferences, and found out that Culturelle and VSL were the two probiotics most used by researchers. From my modest experience, I hear that probiotics worked with some IBD users and did nothing to others. I can tell you that Culturelle definitely helps my son with IBD. He increases the dosage when he feels any stomach issue and multiplies the dosage if bleeding. We see the results right away. I, too, believe in the long-term benefits of probiotics. If perhaps IBD is caused by or results in an imbalance of colonic bacteria and PSC is connected to IBD, probiotics may be re-creating the needed balance. It’s all hypothetical, I know, but it has worked for us. And from my readings, except for acute pancreatitis, probiotics has had no undesirable side-effects. The problem with probiotics is that these bacteria are easily destroyed during production, packaging, and during their passage into the intestines. That is why we wanted to maximize our chances of getting a product that was most probably dependable since it was used regularly in research. I do not know whether the two products are still the ones used in research. They were until recently (I haven’t checked but will share any information I get).

Good health to all.

[Guest guest]

Hi ,I decided to start using Probiotics about a year ago. My brother's wife used to work in an herbal store and is very knowledgeable regarding homeopathic treatment. She told me that in Europe, they usually do not prescribe an antibiotic without prescribing a probiotic. I also figured if I was taking drugs that wipe out bad bacteria, why would I not put back in good bacteria. This was through some research of my own on acid-base balance. I like this book a found on the bargain rack at and Noble "Chemistry of Success: Secrets of Peak Performance." Thank you for assuring me of the Culturelle product. I found out they have it at the Walgreen's down the street.nnenne

Duluth, Minnesota

UC 2002, PSC 2008

From: Gomel <rachel (AT) gomel (DOT) org>

Subject: Re: Re: Probiotics in PSC pilot study

To: "@ yahoogroups. com" <@ yahoogroups. com>

Date: Thursday, August 14, 2008, 1:13 PM

Hi nne,

This is my first time writing to the group since I joined in May. I¢ve been following the daily messages and appreciate the warmth and care emanating from this wonderful group. I can see how everyone rallies to help and can find no words to describe how good that makes me feel. If I haven¢t written, it is because I haven¢t had anything to share. When it comes to probiotics though, I¢ve had some experience I can share with you. Over twenty-five years ago, before probiotics meant anything to the general public, my family was involved in probiotics research... Soon after my son was diagnosed with IBD, we increased our consumption of probiotics through special probiotics-containi ng yogurt, and several years later, following the advice of a New-York GI physician, we started to have the probiotic Culturelle which we learned was one of the brands used in probiotic research (larger bacteria concentration than in

yogurt). We attended several probiotics conferences, and found out that Culturelle and VSL were the two probiotics most used by researchers. From my modest experience, I hear that probiotics worked with some IBD users and did nothing to others. I can tell you that Culturelle definitely helps my son with IBD. He increases the dosage when he feels any stomach issue and multiplies the dosage if bleeding. We see the results right away. I, too, believe in the long-term benefits of probiotics. If perhaps IBD is caused by or results in an imbalance of colonic bacteria and PSC is connected to IBD, probiotics may be re-creating the needed balance. It¢s all hypothetical, I know, but it has worked for us. And from my readings, except for acute pancreatitis, probiotics has had no undesirable side-effects. The problem with probiotics is that these bacteria are easily destroyed during production,

packaging, and during their passage into the intestines. That is why we wanted to maximize our chances of getting a product that was most probably dependable since it was used regularly in research. I do not know whether the two products are still the ones used in research. They were until recently (I haven¢t checked but will share any information I get).

Good health to all.