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"Clostridium Difficile Support Group Ezine"
Volume 1, Issue 2
Wednesday, October 10, 2001
Copyright 2001,
Clostridium Difficile Support Group/SJP Ent.
http://www.cdiffsupport.com
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This edition of the "C. Diff. Support Ezine" is sponsored by:
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Synsorb Biotech, Inc.
SYNSORB Cd(R), has been granted "Fast Track" designation by the US FDA and
is undergoing Phase III clinical trials at centres across North America.
SYNSORB Cd(R) is a potential treatment for recurrent C. difficile Associated
Diarrhea (CDAD), a condition most often triggered by antibiotic
use.
To learn more about Synsorb's Clinical Trials go to,
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IN THIS ISSUE:
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1. From the Administrator
2. C.Diff Database Report
A large, compiled, analyzed report of from our database of cases.
This is a very interesting breakdown of our database.
This is the first release of a report from our database.
Taken from
www.cdiffsupport.com/research.html
3. More from the Administrator...
4. C. Diff Ezine Advertisers & Partners.
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FROM THE ADMINISTRATOR
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Hello Friends,
We hope this finds you all healthy.
In this issue, we have painstakingly sorted and compiled information
directly from our online clostridium difficile database. If you have never
seen the database, you can view it on our site at:
www.cdiffsupport.com/research.html
We encourage you to thoroughly search the main site for answers. There is a
lot of info at the site, in the archived bulletin board and our current
discussion board. Often times, answers to your questions have already been
posted. You can use the search function on our discussion board and web
site to quickly find keywords on pages to what you are looking for.
Getting down to business... We are presenting to you for the first time,
our database in an analyzed-report format. People have been submitting to
the database about their treatments and other details of their individual
cases. From this, we derive and identify trends. If ever there were a
notable outbreak or negative trend, we hope that we could quickly report the
results to the Center for Disease Control to head off a large epidemic.
Also, the database allows sufferers to compare notes of their experience
quickly.
Before reading the report, please keep this in mind: Individuals have
submitted information to us in their own words and feelings. What worked
for them may not work for you. They are not doctors. Many people report
what they feel and that may not be based upon scientific proof. Seek
appropriate medical attention for any condition you may have. Material here
is not necessarily the view or opinion of the C. Diff Support Group Site and
should not be taken as advice or treatment. Everything here is copyrighted
and may not be reproduced.
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CLOSTRIDIUM DIFFICILE SUPPORT GROUP DATABASE REPORT
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Clostridium Difficile Support Group Database Report
Compilation Date: September 30, 2001
Total Individual Cases Submitted: 53
Female: 81%
Male: 19%
Age Range: 5 months to 78 years of age
Age Category Ranges Affected:
0-5yr: 9%
6-10yr: 4%
11-15yr:-
16-20yr:2%
21-30yr:15%
31-40yr:19%
41-50yr:23%
51-60yr:13%
61-70yr:9%
71-80yr:6%
As you can see the most common range is 21-60 with a higher concentration in
31-50. These numbers could be skewed due to very young people not reporting
on their own and elderly persons who may not be using computers and
reporting as much as the middle aged group (which tends to be more active on
the internet). C.Diff used to be more common in nursing homes and hospitals
in the elderly. It is increasingly affecting younger people. There are
many variables which may be affecting the overall accuracy of the numbers.
Number of Countries Reporting: 6
Countries Reporting:
USA (44 cases)
Canada (6 cases)
England (1 case)
Bahamas (1)
Norway (1)
Australia (1)
Number of States Reporting: 20
States Reporting & Percentage of Cases:
9% each MN.
8% each PA,WA,CA.
6% each IL,NC,NY,IL.
4% each MD,FL,GA.
2% each CO,MA,RI,WV,WI,OH,VA,NJ,TX.
Length of Illness Range: 3 days to 20 years.
**Note: The above length of illness range numbers are not very realistic.
One person posted 20 years & another posted 8 years. Both had other
recurring bowel problems which they may have been associating with c.diff.
Data shows that most cases reported lengths of a week to just under a year.
There were a few that were over a year. From this we can reasonably
conclude that the majority of recurring or continuous cases reported to us
were approximately 3 to 9 months in duration. Also remember that most
people who contract c. diff are successfully treated with one course of
antibiotics. Most recover with 1 prescription of antibiotics (7-10 days).
People who are reporting to this database are somewhat atypical in that they
have had difficulty in recovering and don't represent the overall general
population. It is reasonable to assume, however, that the people who
reported to us do represent an accurate sampling of those who have recurrent
c. diff.
**Note: Throughout the report, some of the percentages will not add up to
100% due to participants who did not report certain information - or - who
used more than one medication, more than one doctor, etc.
Number of Recurring C. Diff Infections:
Continuously infected: 19%
More than 2 recurrences: 45%
Zero recurrences: 21%
Most Common Prescribed Medications:
Flagyl: 85%
Vancomycin: 62%
Flagyl then, Vanco: 47%
Cholestyramine: 2%
Questran: 2%
Rifampin: 2%
Most Commonly Used Supplements:
Acidophilus - all forms: 60%
S. Boulardii: 13%
Not taking supplements/not listed: 27%
**Note: all forms of acidophilus includes yogurt, lactobacillus and all
forms of acidophilus products-inlcuding Culturelle.
Patients Reported Their Suspected Causes of Contracting C.Diff:
**This is patient's opinion - not necessarily diagnosed**
Antibiotic usage for other illness: 75%
Hospital stay: 8%
Unknown (no apparent related cause): 6%
Infection: 4%
Diaper handling in daycare: 2%
Antibiotics Listed by Patient Within Suspected Causes Field:
Levofloxin
Flagyl/Metro/Metronidazole
Cephalexin
Zithromax (3)
Ceftin (3)
Albenza
Cleocin (2)
Clindamycin (3)
Ampicillin
Augmentin (3)
Levaquin (2)
Ciproflaxin/Cipro (4)
Suprax
Amoxicillin (2)
**Note: The spelling and appropriate identification on the above antibiotics
may be partially inaccurate due to reporting errors. The numbers following
the antibiotic indicates how many times it was reported more than once.
Related Illnesses/Events Patients Reported Prior to Having C. Diff:
Ear infection(4)
IBS (4)
Sepsis
UTI (5)
Diarrhea (2)
Bacterial infection
hysterectomy
mastitis
breast infection
sinus infection (4)
dental surgery (3)
prostrate biopsy
BPH
GERD
proctitis
salmonella
surgery
viral infection
appendicitis
ovarian surgery
epidydimitis
emphysema
wound infection
erysipelas
chronic intestinal problems
Patients Requiring Hospitalization: 49%
Patients Reporting Free of Symptoms: 6%
**Note: Again, the above number is possibly skewed. Most people who recover
would not bother reporting to the database as they get on with a normal
lifestyle. Most people are so happy to be rid of c. diff that they would
rather forget about it.
Types of Physicians Patients Reported Visiting:
Family/General Practitioner: 60%
Gastroenterologist: 62%
Infectious Disease Specialist: 9%
Pediatrician: 6%
OBGYN: 6%
Internal Medicine: 6%
Naturopathic: 6%
Urologist: 4%
Acupuncture: 2%
Chinese Herbologist: 2%
Patients Reported the Following May Have Helped:
Supplements (all): 11%
Modified Diet: 9%
"Pulse Dosing & Tapering" Vanco: 9%
Vanco: 6%
Flagyl: 6%
Rifampin: 2%
Synsorb Clinical Trials: 2%
Stool Enemas: 2%
Assertiveness with their MD: 2%
Vitamins: 2%
Patients Reported What They Feel Worsened Their Condition:
Misdiagnosis: 25%
Flagyl: 11%
Wrong Foods: 9%
Anti-diarrhea Meds: 8%
Ciproflaxin: 2%
-----END OF REPORT---------
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MORE FROM THE ADMINISTRATOR
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Whew! that took some time. We hope you found it useful and interesting. If
more doctors, drug companies, supplement companies, etc.. would release
reports like this - it would help. We are really interested in their
research so we could post it on the site, help our readers and make their
treatments/products known. The problem is that our time is limited and it
costs a lot of money to run this without proper support. There lies our
limit on how much we are able to expand the usefulness of the
www.cdiffsupport.com site.
We run this site on a volunteer basis - for ZERO dollars - as a service to
people who are suffering. We do solicit for help in the form of donations
and sponsorship regularly. We have received donations from two individuals
(whose names are listed on our donations page) - thanks to both of you!
We also have a dedicated and long time volunteer, Bobbie, who has graciously
provided help in running the discussion boards and providing useful insight
and suggestions as well. Her help has been priceless! Even as she struggles
with her own health issues, she finds time to help us out.
Our visitors, people like you, are truly why this site continues. Without
your kind comments, we would have given up long ago. Thank you for making
the support group work. With this Ezine, we are finally able to at least
know your names (and keep you confidential at the same time!). It's nice to
put names to all those hits.
In the years we have been around, only one company has stepped forward to
help us out directly. That company is Synsorb Biotech of Canada. They
deserve a great deal of thanks from us for their support. I am confident
that their treatments, once approved by the FDA, will change the face of c.
diff. for good.
We are currently in communication with Biocodex, makers of Florastor (s.
boulardii), on how we can form some sort of partnership. We would like to
be able to offer these fine supplements to our visitors directly and support
the support group at the same time.
Despite being a major player in the c. diff supplements realm, Culturelle
has not responded, nor expressed any interest with association in our
website. Perhaps we have not made the right connections with them yet.
DCV, makers of BioChoice has produced an excellent product in the field of
immune support technology. We currently offer their products within our
site.
Just a year ago, we were only getting about 1,000 hits per MONTH. Last
month we got over 40,000! Indications are that c. diff is coming out of the
closet! Let's work together to bring it out, examine it and step on it!
Together we can kick c. diff.
I think in the next issue I will work on an article about changing your
lifestyle to avoid C. Diff. Some of you have already heard that rant - but
there will be more than just that...
Stay Tuned & Stay Healthy!
"Sam"
The Administrator
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