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"Clostridium Difficile Support Group Ezine"

Volume 2, Issue 2

April-March, 2002

 

Copyright 2002,

Clostridium Difficile Foundation

Clostridium Difficile Support Group

http://www.cdiffsupport.com

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All previous issues of this newsletter are available in the Member's Section of the www.cdiffsupport.com website.  Please support the C. Diff. Foundation by becoming a Member.

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This issue made possible in part by an unrestricted educational grant by:

 

http://www.GelTex.com

A leading pharmaceutical company working on toxin binding research for infectious diseases (c. difficile).

For clinical trials info - please go to:   http://www.centerwatch.com/patient/studies/cat289.html

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IN THIS ISSUE:

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1. From the Founders

2. GelTex ramps up clinical trials

3. C. difficile vaccine on the horizon?

4. Infusion Therapy Review.

5. Probiotics and You.

6. Partners and Products.

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FROM THE FOUNDERS;

 

 

Hello Everyone,

 

A new baby boy occupies much time lately - but we still keep the tentacles out to stay aware of news surrounding c. difficile. It seems like we often hear of new cases with a different twist.  Most recently we've seen links between breastfeeding mothers who are on antibiotics and then the baby gets c. difficile.  Also, we've heard from people who start out with c. difficile and end up with Irritable Bowel Syndrome...???  Coincidence?  I don't think so - but the medical community may feel differently about that.

 

Anyway, there hasn't been much overwhelming news to report on lately.  Things are developing but slowly as usual.

 

 

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GELTEX RAMPS UP CLINICAL TRIALS.

 

We touched base last week with GelTex, who is researching and doing clinical trials on a toxin binding technology.  They continue to expand the sites where clinical trials are held and are seeking qualified volunteer patients.

For more details on clinical trials available, you may visit  http://www.centerwatch.com/patient/studies/cat289.html

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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C. DIFFICILE VACCINE ON THE HORIZON?

 

One of our long-time visitors and sufferers of c. difficile recently reported that Beth Israel Deaconess Medical Center http://www.bidmc.harvard.edu is testing an experimental C. difficile vaccine that is effective in inducing anti-toxin antibody responses in healthy volunteers.  They have an ongoing trial in Boston for patients with recurrent C. difficile colitis. To date, one subject with multiple relapses has completed the study and was able to discontinue vancomycin at the end of his vaccine course.  If you are interested in this, you should contact the medical center and ask about the trials.  A "Dr. Kelly" is working on them.

 

 

 

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FECAL INFUSION THERAPY AVAILABLE IN  NORTH AMERICA

 

***This was in the last newsletter.  I want to send it out again for those of you who may still be considering it.  Dr. Kreaden has said that potential patients have contacted him - but none meet the guidelines fully yet.  I must reiterate that Dr. Kreaden is bound by strict acceptance guidelines in order to approve treatment on a case by case basis.  So, please read carefully and do not contact him if you do not meet the criteria.  Please be patient with him on this because the hospital he practices out of has very stringent guidelines until they get an approved & mainstream c. diff program in place.**

 

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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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

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PROBIOTICS AND YOU

 

There are many many probiotic manufacturers out there.  We hear reports of new ones all the time.  Which one is best?  There may be several.  Keep in mind that there are some that are not good.  When deciding, you should always follow a product which you were directed to by word of mouth.  Don't just go to the grocery store and buy one that you've never heard of before.  We believe the best are kept refrigerated - that is a good sign.  We will continue to keep on the look out for good products and let you know.

 

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Partners & Products

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Dr. Thomas Borody, Australia, Probiotic Therapy Research Centre. 

They have established a website at http://www.probiotictherapy.com

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Place your company or product here & support the Support Group!

 

e-mail for info:

 

cdiff@cdiffsupport.com

 

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