C. Diff. Foundation Newsletter Vol.2, Iss.1, Feb. 2002

Clostridium Difficile Support Group Ezine

Volume 2, Issue 1

February, 2002

http://www.cdiffsupport.com

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IN THIS ISSUE:

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1. From the Founders

2. GelTex making progress

3. The Clostridium Difficile Foundation

4. Thank You...

5. FRESH FloraStor!

6. Fecal Infusion Therapy in North America

7. Probiotic Therapy Research Centre

8. C. Diff Ezine Advertisers & Partners.

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FROM THE FOUNDERS;

Hello Everyone,

We are wishing all of you a healthy 2002.

The holidays have undoubtedly been a test of everyone's endurance and stomach health. Some of us were good.. others were very bad! Regardless of how good you were to your stomach, we hope that everyone enjoyed the holidays. Hopefully all of you, as all of us, took time to be thankful for all the freedoms that we enjoy in our lives. Medicine is advancing at an incredible rate and many cures are right around the corner - so to speak! Cures for c. difficile continue to be evasive - but many different treatments are showing great promise. In this issue, we will bring you all up to date on all that we know.

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GELTEX MAKING PROGRESS.

While Synsorb struggles and has stopped research of c. difficile toxin binding technology, GelTex is pushing full-steam ahead. Phase 2 clinical trials are spooling up in the US & Canada. We hope that they will be successful in proving the effectiveness of a toxin binding product. A good c. difficile toxin binding product would "trap & expel" the toxins that the c. difficile creates in the gut. It is the toxin which irritates and creates such severe side effects and symptoms. The FDA mandates strict guidelines for companies who are researching new drugs and treatments. To that extent, GelTex has vowed to follow those guidelines to the fullest extent. What this means is that they may only release certain information that has been approved to be made public by the group which assures compliance within GelTex. For more details on clinical trials available, you may visit http://www.centerwatch.com

Centerwatch.com is where you will find companies who are actively conducting clinical trials for a variety of illnesses and treatments. Be assured that we are in contact with GelTex frequently and that anything that can be released - will be released to us immediately as it comes available.

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THE CLOSTRIDIUM DIFFICILE FOUNDATION

The main Clostridium Difficile Support Group site continues to be updated. The transformation of the site 4 years ago until now has seen it go from a GeoCities free site to one with its own domain name and hosting.

We have gone through some large changes recently that may not have been as evident to those of you who primarily visit the discussion board. We have created the Clostridium Difficile Foundation. While the main website at www.cdiffsupport.com is still named the Original Clostridium Difficile Support Group (because in essence, that is its primary function) - we wanted an all-encompassing name which better matches our goals.

The Clostridium Difficile Foundations' goal is to not only provide the Support Group functions that we have done for years, but to also try to get more directly involved in upcoming new treatments (medical and natural). Ultimately, we would like to provide hometown resources for sufferers of c. difficile in all major cities. We don't know if it will ever happen to that extent, but we have always hoped to do more for all of you that suffer. Wouldn't it be nice if you could drive to one location and get professional, specialized c. difficile treatment in your own home town. While it is still only a vision, this would make us very happy.

We are limited to our meager resources and time limitations - but being persistent usually provides results in the long run. For now, our most powerful tool is networking to provide a communications channel to our visitors. Our current networking includes contact with GelTex, Culturelle, Dr. Borody of the Probiotic Therapy Research Centre (Australia), Dr. Kreaden of Canada and we are working with other new contacts.

Our password-protected Member Section continues to grow, with more doctor referrals and miscellaneous figures and facts. It is about time that we recalculated the C. Difficile Database (which members can view in it's entirety in the Member Section). We never thought we'd see the need for membership subscriptions. However, since Synsorb pulled out of their sponsorship, it has proven to help us greatly in improving the site and paying for expenses associated with running the site. You will see some graphics-related changes to the site in the near future as your help has allowed us to acquire software to do so. We hope to do some "clean-up" and re-organization soon.

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THANK YOU...

Our thanks goes out to all of you who have in some way or another (membership, participation in the discussion board, etc.) helped us help others. We have a special group and are very proud to have all of you with us to enhance the support experience.

We would also like to express special thanks to our two "official moderators": Bobbie and Lauren who often take many hours out of their days to answer questions and point visitors in the right direction for help. We know there are many more of you who are very active in the discussion area and would like to also thank you too.

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FRESH FLORASTOR!

Florastor comes from France and sometimes gets slow through the customs channels. Please be patient and you should be able to find it in stock somewhere.

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FECAL INFUSION THERAPY AVAILABLE IN NORTH AMERICA

A Canadian doctor is offering infusion treatment on a limited basis.(He is in contact with Dr. Borody so the treatment is the same - only now it's in North America.) The catch is that he is only going to do the procedure on carefully screened patients according to a strict admission requirement.

PLEASE READ HIS MESSAGE CAREFULLY BELOW - BEFORE CONTACTING HIM. IF YOU DO NOT MEET ALL CRITERIA, HE WILL

NOT TREAT YOU.

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"As mentioned previously I can only accept patients on a case by case basis,then needless to say these individuals would likely be the most debilitated or desperate. However that being said I assume many or most if not all patients here are pretty desperate. For now patients should be healthy enough to travel to Toronto (Canada). They must have fully documented C.Diff infection. I must have access to full medical history including imaging procedures as colonoscopy, xrays, biopsies, consult notes from doctors and specialists etc. For now they will have to be accompanied by healthy donor who has

not had antibiotics for at least 3 months and have documented proof of absence of communicable disease such as TB; Hepatitis A,B,C; stools tested for culture, parasitology and of course C.Diff. As of yet we have not established a donor program for long distance travellers but that would be in the 'works'. Also as our hospital has a web site, I would hope to have this info on the Hospital web site. So if you know of anyone you deem sufficiently desperate you may give them my email address..let us use hotmail:

dkreaden@hotmail.com

Sincerely...David Kreaden"

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Again, please don't contact him unless you meet all criteria.

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PROBIOTIC THERAPY RESEARCH CENTRE

Is Canada too cold for you? Need a sunny, fun-filled vacation...eh?

You're in luck then! Dr. Thomas Borody, of Australia, has opened his Probiotic Therapy Research Centre. They have established a website at http://www.probiotictherapy.com

Dr. Borody is a pioneer in infusion treatment (like the one mentioned above which is now available in Canada.) In fact, it was Dr. Borody who recently lectured on the subject in North America and led to Dr. Kreaden offering this to patients in Canada. The two doctors are in direct contact and according to Dr. Borody - he has seen a high success rate with his patients who have undergone therapy. For more details, please go to his website listed above.

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