LET'S MAKE SOME NOISE AND FIND A CURE!!!!

[L.S.]

I just emailed the CDC and asked a few pointed question about c-diff. I also sent the link to this support site. I figure there's power in numbers and if enough of us make some noise it will bring more attention to this monster as well as a cure.

Interested in speaking out?

http://www.cdc.gov/

scroll to 'contact' on bottom of page.

[Christina]

LS,

Many of us have contacted the CDC in the past plus tons of media outlets without any real response.We are heard and then forgotten. Read the post titled email from Dr.McDonald in general C-diff discussion dated April 19,2007. It is from the head of CDC who was in charge of tracking C-diff, Clifford McDonald. The CDC also has a program called Get Smart which deals with antimicrobial resistance and the over use of antibiotics. Although all of us want a cure for C-diff it seems as though it may still be far off. But I can assure you there are many Dr.s' here in the US and abroad working very hard to try to achieve this. One of the hard things about c-diff is the only thing so far that can kill the spores for sure, is bleach and obviously we can't consume that. The stool transfer is a good "cure" as it replenishes your flora and gives you a new chance at starting over but for those of us who can't get a stool transfer or in a case such as mine where it did not work, there is no cure and we will always have to wonder when and if C-diff will rear it's ugly head again. Although it is not a fun way to live I am very confident that sometime in the future there will be a cure for C-diff and that new treatments will become available that are non antibiotic. There are many new drugs in the works all over the world and I'm sure it's only a matter of time before a cure is in the works as well.

Christina

[L.S.]

[quote="christina"]LS,

I am very confident that sometime in the future there will be a cure for C-diff
Christina[/quote]


Not if we are heard and then forgotten.

This is a situation that calls for vigilance. I'm a firm believer that if enough people make enough noise, eventually we will be heard and not forgotten. Together we can make a difference.

Thanks for your reply Christina. I'm sorry to hear about your condition. I wish you all the best for a complete recovery.

[asusa]

Yes, I too believe that more awareness would help our cause. Does anyone know anyone at "HOUSE" the Fox Network medical show?

They should do a episode about it - showing that even come doctors are not really aware of it and its nasty dehydration weight loss burning itching etc. ...

Anyone?

[Christina]

Thanks L.S. but I don't have a condition. I no longer have C-diff and I have done many, many media reports and noise making. There are many C-diff experts (researchers) located throughout USA and also in other countries working hard to find a cure. Do a little research and you may stumble across the info. concerning them. Don't be to quick to figure they aren't trying until you've read and searched the facts.

I hope you get well soon.

Christina

[Lauren]

L.S. - I know you're new to the site, but if you look around a bit more you'll see that we've done an awful lot in attempting to publicize the issue. We welcome additional contributions as the US media, unlike the UK, hasn't been too quick to catch on. Our members have done radio shows, TV spots, newspaper interviews, written the CDC (the CDC's chief research head on c-diff is a friend of the site), written congresspeople and even done writing campaigns to Oprah, among other things. We also have a "Media Reports" section where we track all publicity we find or are able to generate.

We'd love to hear specific ideas - and welcome help in spearheading new ones. What would you like to lead?

[Bobbie]

LS,
Welcome to the site. Read the first forum ALL USERS READ THIS FIRST & its subtopics. They will guide you in using the site & answer some of the most frequent questions. Read Dr. Borody’s & Dr. McDonald’s articles and some of the topics in FAQ – especially Hygiene, Nutrition, & Testing. Let's hope you are one of the lucky ones (approx. 80%) who recover with one to two rounds of Flagyl or Vanco. Since antibiotics contributed to your C. diff., be careful about taking them again. (See FAQ-Antibiotics.)

Thx. for the tip of nausea. I'll post it in FAQ-Digestive Complaints (Gas, Nausea). Clindamycin was the lst antibiotic implicated in C. diff. -- nasty stuff. I, too, had great teeth until an oral surgeon "botched" a tooth extraction. Loved your comment in TMI. A sense of humor helps get you through C. diff.

Many people can tolerate Flagyl. Others can't & have various side effects. Most docs. start with it because it is less costly than Vanco. Vanco., however, appears to be more effective against the newer strains of C. diff. Check your insurance policy!!

I've known about C. diff. since l979 when my son first had it. He had it again approx. 8 yrs. later, & I've had it twice (l994-1997) & again in l999. In all that time, there was little interest or publicity about C. diff. until recently. although it still doesn't get the attention it should.

As Lauren & Christina said, we've tried everything to gain more recognition for the disease -- even a group Email to Oprah & everything else Lauren mentioned. I did a presentation to an amendment comittee of the KS legislature attempting to make C. diff. a mandatory reported disease -- without luck. If you look at Media Reports, you'll see stories about some of our posters as well as recent news about C. diff. There is little follow-up, however. You can place a "google alert" for C. diff. yourself. which will give you a lot of info., but we have most of it in Media Reports.

We could use new ideas, and we'd love to hear them. What do you have in mind? The mods./administrators have been doing this a long time (Lauren & I for 8 yrs., Allison for 7, Nancy for 2, & Christina for over a year) & have problems keeping up with the site. And we do have regular lives. We need somone who is new and fresh and can devote hours a day toward making C. diff. "a household word."

Ideas????

[liz41]

What's the tip on nausea? I didn't see anything new in FAQs.

I'm proud of all of you for doing so much for all of us who deal with this junk. Thanks so much for helping get and keep people informed. We can all do something whether big or small. Let us know.

[asusa]

I really appreciate this site for its help to me and its help to the world at large. I've had cdiff for over a year, starting with an immune system weakened by chemotherapy, tapering now with vanco and culturelle caplets, goat milk acidophilus and primal defense.

During this year, various of my acquaintances have complained about the same symptoms, usually following surgery or a round of antibiotics. In all cases their doctors were searching elsewhere for causes, and sure enough when they asked for a stool test, guess what they had.

Seems to me general practitioners are unaware of how prevasive this bug really is.

I got cdiff from levaquin after a post-surgery infection for breast cancer; my general practitioner kept me on a diuretic even tho I had chronic diarrhea from cdiff and vomiting from chemotherapy so I ended up in the hospital 35 pounds down and dangerously deplete in NaCl and h2o. The hospital doctor took me off the diuretic against the wishes of my GP, but put me on yet another IV antibiotic - clindamycin.

Once home, I looked up levaquin and found cdiff as the side effect, but my GP wasn't sure [Said to me "I can't read A BLOG," and tossed the printout back at me], so he sent me to the GI colon cancer guys for hemorroids instead of infectious disease for cdiff.

It's been a circus where I can't laugh I'm so busy gasping in shock at all the misdiagnoses, wrong turns and lack of observation, insight and belief by medics, who are doing their best, but unaware of the magnitude of this bug's geography, as I said. A tv show on it would help.

Now I'm on 1 Vanco a day down from 4xday and I do believe I'll be better some day - maybe never constipated again, but better.

Thank all of you for helping me learn more and keep my spirits up.

Susanne in LA

[Nancy1]

liz41,
The tip on nausea is from L.S. in the General Discussion section, dated Aug. 5. Thanks for your offer of help. Do you have any contacts who might help us publicize cdiff?

Susanne,
I'm gasping in shock too about all the problems you've had, especially since so many of them were due to doctors. Unfortunately, this seems to happen to a lot of us. It's really scary. I'm interested that so many of your acquaintances have gotten cdiff; I think I'm the only one of my friends who has had it. I like your idea of a TV show on cdiff -- any ideas on how we can make this happen?

Hugs to you all!

[L.S.]

Hi all!

Please read my reply under 'general discussion' section; "gee....".

I'm so happy to hear that not everyone on this site is till battling c-diff. I should not have assumed that everyone is.

Bobbie I agree that a sense of humor is key to positive outcomes in all of lifes downers. I'm glad my comment made you smile.

I emailed the Mayo Clinic and CDC, so far. I will continue to do so. I figure if I become annoying enough, they will eventually listen. As time permits I will continue my quest for a spotlight on this this subject by contacting any and all in the medical/ pharm. communities on both State and Fed. levels. This is a #%$^&^*( disgrace that people are suffering like this when a cure is probably laying in some moss or some wild tree bark somewhere..... ;)

Oh, for those who can't find it......my tip for nausea is to rub a bit of ground ginger across your tongue followed with a few sips of water.
When I started the Flagyl I couldn't stand the nausea. A cousin reminded me how our grandmother used it. It worked great.
I wet the tip of my pinky finger and dip it into the container of ground ginger. That amount was enough for me.

Best wishes for a speedy recovery, health and happiness to all.

[L.S.]

Ooops again (must be the Flagyl making me forget).......
[b]Please read my reply under 'Got a Suggestion or Complaint'[/b]

NOT 'General'.......duh.

[Bobbie]

Susanne,
Sorry for all your problems. Many of us on this site have had their share of misdiagnoses, plain "don't care" attitudes, etc.

Remember, all docs. don't graduate at the top half of their class. Even the best doctor gives only an educated, experienced, expensive opinion (guess). If your "gut feeling" (no pun intended) tells you the opposite, "question, question, question."

I developed C. diff. (the 2nd bout) after a round of Levaquin for pneumonia. Last Nov. when I had pneumonia again, the pulmo. wanted to put me on Avalox. I called several pharmacists & did some checking on the Internet. Levaquin is related to Avalox so I called the pulmo. back & said I'd rather have a Z-pak. He wasn't happy but complied. Amazingly enough, it worked & no C. diff.!! See FAQ-Antibiotics. My primary pulmo. is one of the best in the city (voted so by fellow physicians) & is a great doc. but told me several times that the alcohol cleaners are mor effective against bacteria than soap and water!!!

Doctors are only human & some seem inhumane. Others are truly good, dedicated physicians who want to help. (The $$$ probably doesn't hurt either).

Glad you are feeling better.

[asusa]

Starting May 2006, I've been challenged by cdiff. Medical ignorance is dangerous, and although I live in LA, I have no real connections to making a TV show happen on our topic.

The herceptin / adriamycin chemo combo has now damaged my heart, so I get three more meds per day until things normalize and they see if my heart will mend itself, for which chances are good but time, time, time.

For cdiff, I'm taking 1/day of 250 vanco, sometimes 2. Now I'm bleeding rectally and don't have a clue why, as cdiff is low key but still there - these days. I'm very tired of all the complications of dealing with docs, their boarish staff and the unwielding phone systems.

CDC worries that cdiff is a terrorist threat. I agree .

Susanne