Rules of Posting, Standard Introduction, Testing

To Use this site- you must read, understand and agree to all of these conditions. If you don't, then please leave now and do not post or read any messages.
Bobbie
Administrator
Posts: 11960
Joined: Sat Aug 06, 2005 8:00 pm

Rules of Posting, Standard Introduction, Testing

Postby Bobbie » Tue Jul 29, 2014 12:25 pm

You have been diagnosed with a scary, not well-known, disease. Before you post and ask questions, please read Rules of Posting, Standard Introduction, and Testing. Much of the information you need to know is summarized in these sections. Because we have so many new posters and because some of our moderators (volunteers who had/have C diff or its side effects, are ill or have other problems) we are going to try a new approach by helping you help yourself. We are one of the few support sites who use a lot of personal contact, and we will try to maintain as much of it as we can. Other support sites are listed in the fourth topic of this forum. You are free to join as many as you want.

Again, please read the following:


Rules of Posting

- Indicate your approximate age and if you are male or female.

- Before creating a new topic for discussion, search to see if a similar topic already exists.

~ Follow standard grammar/spelling rules and avoid using slang and netspeak. Use punctuation and paragraphs. This makes it easier for us to read your posts and reply. We make exceptions for those from other countries who don't speak English as a first language.

~ Back and forth (ping pong) emails between a few does not benefit others or add information. If you want to chat with other members, email or PM them or use the Chat Forum.

~ Create subject lines that are clear. Avoid non -specific subject lines such as "Update."

- Your posts can be as long as you like, and you can post as often as you wish for the first 30 days you are a member. After that period, make your posts concise and limit them to one a day. You can ask multiple questions in the post There is no limit on posts to support others. You can post again in Chat Forum, but be reasonable about the number of posts.

~ The boards are categorized. Post in the appropriate forum and stay on topic. Do not repeat the post you are answering.

~ Do not double post or crosspost. Post in as few forums as possible - Gen. Dis, and Questions are the ones used the most - so we can read your posts and help you faster.

~ Avoid the use of all CAPITAL LETTERS in posts. All CAPS is considered "shouting."

~It's OK to disagree with someone, but we have a zero tolerance policy on flaming. Any attacks against another member will result in immediate revocation of membership.

- if you are answering another post, note the date of the post. If it is old, the person you are posting might not still be a member.

~ If you wish to alert others to information found elsewhere on the internet (articles, etc.), use a hyperlink. Do not cut and paste articles, etc. directly into your postings. Our site does not participate in file sharing without written permission from original authors.

~ Posts are deleted for content regardless of authorship. Not following guidelines for posting is the most common reason. Contact a moderator if you feel one of your posts was deleted and you want an explanation why. Admin. is not obligated to provide a reason.
Last edited by Bobbie on Thu Mar 31, 2016 3:00 am, edited 39 times in total.

Bobbie
Administrator
Posts: 11960
Joined: Sat Aug 06, 2005 8:00 pm

Standard Introduction

Postby Bobbie » Wed Mar 30, 2016 9:41 pm

STANDARD INTRODUCTION:
Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Site History” and “Information and Guidelines for Posting to our Discussion Boards.” (Note limits on posting.) This will guide you in using the site and answer some of your questions. Read Dr. Borody's articles. Also see the topics under “CDI” – particularly Recent CDC Report, C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.

“Doctors” lists physicians our posters recommended and also a worldwide list of C. diff. specialists with contact information. (Many perform FMT's.) See the forum “FMT’s and FE’s” or “Media Reports” for new information on C. diff.
The majority of patients (about 70%) recover with one to two rounds of Flagyl, vancomycin, or Dificid. An unfortunate small percentage doesn’t and can suffer for months. Most recover unless there are factors such as advanced age or other severe health problems. New treatments include FMT's, which have a high cure rate. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. 20l6 will be a year of many advances and HOPE.
Help us make others aware of C. difficle – which will lead to further advances in treating and/or preventing the infection. If antibiotics contributed to your C. diff, be careful about taking them. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested.

For more information, see other support groups including http://www.peggyfoundation.org, Clostridium Difficile Infection (CDI) Support Group, FMT Discussion, Fecal Transplant Foundation, C Diff Foundation, and the UK Support Site. There is also information on some of the better medical sites like Mayo's, Medscape, and WebMD, and the CDC website. Don't use "Dr. Google" to diagnose yourself.

This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. The best protection for you and others is thorough hand washing (soap and water are preferable) and good hygiene by you, those around you, and your health care providers.

No one will understand what you are going through except someone who has/had this unpredictable disease. All of our moderators and frequent posters had/have C. diff. (or a loved one with it) and know how physically, emotionally, and financially disabling it

Again, welcome. Remember, the odds are in your favor. (End of letter.)

Bobbie
Administrator
Posts: 11960
Joined: Sat Aug 06, 2005 8:00 pm

Testing

Postby Bobbie » Wed Mar 30, 2016 11:22 pm

Latest info. On Testing and Relapsing

I asked a C. diff. expert these questions as many docs. disagree. I trust his answers above all others.

Q. How long to retest after Flagl/vanco/Dificid during active C. diff.?
A. 7 to l4 days and the longer the better. PCR is false positive for up to two weeks as bits of DNA from killed C. diff. are passed out, and if tested too soon gives a false positive result. Culture early is accurate but not easy to get done by labs.

Q. When to have FMT?
A. After two or three rounds of C. diff. meds.

Q. Is PCR most accurate test?
A. Yes, with above condition.

Q. Do the spores/bacteria lie dormant in your system until another antibiotic/or other cause activate them?
A.Yes, spores do lie dormant -- that is the underlying mechanism of the "relapsing" nature of the disease togethre with the damage to the host microbiota.

"BUT after FMT there are no longer any spores left and antibiotics will not cause a relapse. The reason we use FMT is that the incoming new bacteria possess bacteria which secrete 'antibiotics' that kill the spores.

Relapse after successful FMT generally requires antibiotics + exposure to a new source ( generally different strain) of CDI."

The expert said, "..The best test of FMT in CDI is a course of antibiotics without recurrence. Works if well done. I routinely do 2 infusions. First via colonoscopy next day enema. Get close to 99% cure. Then the patient is GENERALLY safe . Exceptionally (3-5%) antibiotics + close exposure to a new strain eg in hospital .. Will give them another CDI infection.
... So around antibiotic time keep out of hospitals, keep away from sick people, wash hands , no cold meats , pray lol."

So, wash your hands, try to avoid antibiotics (if that is your "trigger"), and know someday soon, with all the new knowledge, treatments, and additional testing, C. diff. will be a disease of the past - like so many others: bubonic plague, polio, small pox, etc - or at least easily treatable. Remember, you aren't necessarily part of this category. Many (the majority) recover from C. diff. easily and never have it again.

Re: C. diff. Testing - Includes Most Recent Info.
Postby roy » Thu Jan 22, 2015 3:08 pm

This article talks about reliabilty of tests

PAY PARTICULAR ATTENTION to the sections on the right of the pages that prove that testing to prove a cure after meds are up to 50% false positives.

Roy submitted this. Great "over all" synopsis of C. diff and treatment.
http://www.asp.mednet.ucla.edu/files/vi ... /CDiff.pdf

C. diff. Testing and Diagnosis
Postby Bobbie » Tue Jan 05, 2016 1:13 am

I asked a doc,who is a C diff expert, several questions people have posted lately. Here are the answers. I trust this doc above all others when it comes to c diff. Would not mention where you got this info as it could be construed as medical advice - not in our job description.

ANSWERS

Ask post-FMT people to avoid PCR and delay at least till week 8. Too many false positives. ( DNA not living CDI)

Best way to measure success is "has the diarrhea gone?"... Then 8 wk PCR. If solid add saline and make it liquid.

if unhappy with lab, change labs or complain.

Yes, you can be +ve for CDI with formed stool. Generally such patients have cramping or gas. Some have co-existing constipation.


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