My Suggestion for the CDC

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Lisa33
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My Suggestion for the CDC

Postby Lisa33 » Sat May 30, 2015 9:40 pm

I think the CDC needs to read boards like this one to see how many posters are actively battling this horrific illness. Since I've been a moderator (I know my access doesn't show it yet), I've been looking out for new posters. It is absolutely amazing that there is usually one new poster a day. Sometimes there are quieter days, but there are enough new posters to make me think that c-diff is at a scary level. And, we are just one site. It's just a scary observation to me. I know that C-Diff is getting more attention, and there is hope that a cure may be in the near future. But, in my opinion, it's not soon enough. People shouldn't have to suffer relapse after relapse. Meds for relapses are probably a bigger cost long term than finding a cure, which is probably why the recent big push for a cure. As pathetic as that is, that is probably the reason in my opinion. I just wanted to vent about it.

Thanks for listening to my rant,
Lisa

NikaNik
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Re: My Suggestion for the CDC

Postby NikaNik » Sat May 30, 2015 10:00 pm

Amen, Lisa! I couldn't agree with you more. Congrats on the mod status, by the way! Your insight and support has been so valuable to me and many others, I'm sure!

Lisa33
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Re: My Suggestion for the CDC

Postby Lisa33 » Sat May 30, 2015 10:32 pm

Thanks so much, Nikki!

Dobies#1
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Re: My Suggestion for the CDC

Postby Dobies#1 » Sat May 30, 2015 10:55 pm

AMEN!! I couldn't agree with you more. There are way so many folks diagnosed each day. A lot of them probably don't know about this forum, so like you say Lisa, this is just one site, so it's scary thinking about how bad it's getting if new members post here on the one site each day. I never found this site until AFTER I had C Diff three times! I felt like there wasn't much info about it at all until I found this site. I was so terrified after the third time that I did a search and thankfully I found you guys! It has made me feel less alone, and like I'm the only one who can't get the thought of C Diff out of my head. It's such a crappy illness and it blows!! Pun intended! Congrats on being a mod Lisa!

beth22
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Re: My Suggestion for the CDC

Postby beth22 » Sun May 31, 2015 1:45 am

They need to find something to get rid of those spores because even when you think you are done with it, you're not. I tested positive after 4 years of not testing positive. Every time we need to take an antibiotic for something, those spores are there waiting to get active again. IBS seems to be part of most of our lives. There really has to be some kind of a solution soon.

Bobbie
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Re: My Suggestion for the CDC

Postby Bobbie » Sun May 31, 2015 2:06 am

I used to keep in touch with Dr. Clifford McDonald of the CDC. He confirmed soap and water are more effective than alcohol gels for bacteria - gels are effective against viruses but not bacteria, Years ago, Dr.M was in charge of keeping track of all the cases of c diff in the U.S. I believe he has since received a promotion but still deals with tracking c diff.

Years ago, there was little research about c dif.Now there are over 30 companies competing for cures/preventatives.

Just PMd you, Lisa. Alvin is due back on the 30th and I will remind him again about your mod.status. He has been gone since the 1st of the month so probably didn't get my first notice. Thx for all your hard work on the site.

To see the number of new posters we receive every day, check Members. There are are four or five other c diff support sites I know about, I listed some of them in Gen. Information. That is a lot of c differs.

At the bottom of the screen, notice the number of "guests." These are people who cruise the site for information but don't register although some eventually do.

roy
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Re: My Suggestion for the CDC

Postby roy » Sun May 31, 2015 4:07 am

Its big business.
A vaccine is a one shot profit and will never cover the development costs.
If someone has never heard of c.diff they are not going to pay $1000s for a jab just in case .
They will pay it for treatment when they are sick though so most of the big money goes into treatment.

AllisS
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Re: My Suggestion for the CDC

Postby AllisS » Sun May 31, 2015 8:07 am

Lisa, I am glad to see your comment re: the CDC, which, in my opinion, is at best an alarmingly ineffectual, and at worst, a catastrophically error-prone entity (e.g., its bungling "oversight" of the Ebola crisis). The CDC allows its own guidelines of soap-and-water use for hand hygiene to be dangerously misrepresented by hospitals. My PCP's practice and other specialists whom I see in Boston are based at such a facility, which is considered a top-notch teaching hospital. For three years, the hospital has been engaged in a misinformation campaign touting the superiority of alcohol-based hand gels such as Calstat over handwashing with soap and water. The hospital's own infectious disease department has created screensavers and patient brochures, disseminated in waiting rooms, advising that hand gels are "quicker" and "more effective at killing germs" than soap and water! I contacted numerous staff at the hospital, all of whom dismissed my concern and stuck to the dubious assertion that they were "following CDC guidelines." In an effort to try and confirm actual guidelines, I got in touch with CDC's Dr. MacDonald (mentioned by Bobbie in her post); he seemed to think it was a gray area -- in which case CDC guidelines should be stating that clearly, in a way that the average person who isn't a research scientist can understand.

There will be a conference about C. difficile in Boston in November, attended by "experts" and others in the field. I think it would be great if patients -- those of us who have experienced C. diff firsthand -- could be represented. If anyone is interested in this possibility, please PM me.

Allison
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

Lisa33
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Re: My Suggestion for the CDC

Postby Lisa33 » Sun May 31, 2015 12:50 pm

Thanks everybody for all of the replies. Allison, thanks for sharing - I just shake my head on how misinformed hospitals even are on proper hygiene. It shouldn't be such a grey area. It's just a frustrating topic. I feel like many cases can be avoided in healthcare facilities. But what's even scarier, is that more and more cases of c-diff are being contracted out in the community. That was the case with me. I took an antibiotic and came down with c-diff. I wasn't in a hospital or a nursing home. It's also scary on how many people keep relapsing from it. And you're right, sometimes the people who actually been through it, can be the best educators and advocates for change and awareness. At the very least, we can make others aware that this bug is out there, and you can try to avoid it by not taking antibiotics unnecessarily, and washing with soap and water if in a healthcare facility. I wish I knew about this horrible illness before I took an antibiotic last August. I didn't even know about probiotics and building up good bacteria that is destroyed by antibiotics. Education can help people make better choices for sure.

Thanks everybody for some great responses!
Lisa

NikaNik
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Re: My Suggestion for the CDC

Postby NikaNik » Sun May 31, 2015 1:20 pm

Once again I totally agree with you, Lisa. I, too, hadn't been in a hospital when I came down with c diff. I took Augmentin for a sinus infection and whamo. However, I had fibroid surgery the year before and three months earlier I had visited my father-in-law at the hospital so I'm guessing that's where I ingested a spore somehow that was sitting dormant in my system till then (so easy to touch a surface/object in a room and touch your mouth or eat etc.). One nurse told met that I couldn't have c diff if it wasn't pure water (it wasn't for me) and another told me c diff stools are green (they weren't for me). The misinformation is crazy.

I pray every day that soon c diff is a disease of the past! Or even for a super simple cure. Like, "Oh, you have c diff - here take this." And in five minutes it's gone. : )

Bobbie
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Re: My Suggestion for the CDC

Postby Bobbie » Sun May 31, 2015 2:15 pm

A dab of alcohol is easier and faster for medical personel but unlike the Burma Shave commercial, "a little dab doesn't do you." We need a coordinated countrywide campaign promoting soap and water. England did it years ago and members of a c diff site even marched on Parliament.

Florence Nighingale and Clars Barton persuaded doc's to use soap and water years ago, With our tech savvy society, it should be easier today but complicated and a lot of work.

Dr.M told me years ago alcohol gel does slough some of the bacteria off if you "rub briskly." Better than nothing.

I always ask doc's and nurses if they have washed their hands. If there is a sink in the examining room, I watch them wash their hands. Most use a small squirt of soap, rub for a short time,and then turn off the dirty faucet with their clean hands.

Years ago, Oprah had a segment on hand washing. The correct method is under CDI - Hygiene.

Lisa33
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Re: My Suggestion for the CDC

Postby Lisa33 » Sun May 31, 2015 7:00 pm

Bobbie - I couldn't agree with you more on how there should be a nationwide campaign on proper hand washing. It is astonishing how so many in the medical field don't properly wash their hands. I never took notice before c-diff, but now I sure do! I obsess over hand washing now. I drive my daughter crazy because I am constantly washing her hands. I'm sure I'm over the top, but I just can't help it after c-diff. I use the alcohol gel when I'm out and about because I feel like it's better than nothing. At least it may prevent some viruses if anything.

Bobbie
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Re: My Suggestion for the CDC

Postby Bobbie » Sun May 31, 2015 9:48 pm

I do the same thing - soap and water at home and in restrooms in restaurants and stores. Can't hardly lug a sink with water and soap in the car altho one of our moderators did just that, but she called on small children who had health issues.

kwiatek7
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Re: My Suggestion for the CDC

Postby kwiatek7 » Sun May 31, 2015 10:20 pm

Lisa,

I totally agree with you 100%. When I got diagnosed with C diff I did my own research and didn’t find much and I didn’t know anyone that had it so I couldn’t relate. I even called my health insurance as they had a 24/7 nurse hotline and the nurse on the phone wasn’t educated well enough as I ended up knowing more than her. She goggled what I asked her and read straight from the site. When I found this site it was a blessing as I was able to read and relate. I felt more at ease because what I was experiencing a lot of others with C -Diff have been too.

CDS needs to get more involved and I think it’s becoming more and more of an issue. You mentioned, “Meds for relapses are probably a bigger cost long term than finding a cure which is probably why the recent big push for a cure.” Your right but at the same time I feel like if the "cures" came out then the pharmacies/doctors and others will loose a lot of money. There are always two sides to things. I only hope that they have people's best intention at heart but yet need to be cautious about it.

Hope everyone is getting well!

Agnes

august14
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Re: My Suggestion for the CDC

Postby august14 » Tue Jun 02, 2015 6:57 pm

Agreed.

And also I agree about the handwashing. When I was a high school intern in a hospital I was sent by infection control to monitor handwashing. Basically, I was given a list of all the times they should be using soap/water and the times gel is acceptable. It was atrocious, and I definitely notice it now. It makes me mad that I could have gotten this from the people who were supposed to be helping me get healthy.


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