Need advice please! c diff infections since October 2019

Treatments, possible treatments, unsubstantiated/unproven treatments. Consult your doctor first.
MSumner
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Need advice please! c diff infections since October 2019

Postby MSumner » Tue Jan 21, 2020 7:40 pm

Hello community,
I'm new here, as I only just discovered this forum today, but I've been suffering from recurring C. Diff infections since mid-October 2019. It began when I was prescribed Cipro by an express family clinic PA (I was in grad school, I didn't have a primary care doc) for a stomach upset that wasn't going away. But after finishing the med, I noticed worse D to follow. I was referred to a GI doctor's office that had me do a colonoscopy/endoscopy and stool test, only to discover it was c diff that was causing it. Since then I've had vanco twice, and both times it cleared up only to return after a week or so (my last dose I finished January 7th, and now I'm having bad D again.) I'm at an infectious disease doctor now who wants to try Dificid.

Since I've never gone through something like this before, I want to ask the community of c diff warriors here whether Dificid actually worked for them, or if it still came back? What probiotics might work best to help, if any, since I have no idea the differences between brands, and if it would be beneficial to participate in a clinic study for this new treatment: https://www.rebiotix.com/punchcd3/unive ... O0QAvD_BwE

I appreciate any advice anyone would like to offer, I'm just at a loss, and concerned about how I can recover from this and if/when it will ever end? Thank you!

AnxiousJ
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Re: Need advice please! c diff infections since October 2019

Postby AnxiousJ » Wed Jan 22, 2020 12:29 pm

Difficid did work for me four years ago. I also took the probiotic, Florastor 2x a day for a very, very long time. Bio K Plus is also a another excellent (but expensive) probiotic I used before and after I had Gallbladder surgery and then when I had to use the antibiotic last year. A well reknown c diff specialist ID recommended it. It can be found online, at Whole Foods and Amazon. Good luck! You have a very good chance of it clearing and hope you feel better soon.

beth22
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Re: Need advice please! c diff infections since October 2019

Postby beth22 » Thu Jan 23, 2020 12:27 am

Hi MSummer and welcome to the site. Please read the first forum for more information for new posters.

I did not take Dificid, as it was not out yet when I had my many relapses of c difficile. A vanco taper did not work for me and I wound up doing FMT. Others have had success with Dificid. Some with just one round and others did a taper. I would give it a try. If not, there is FMT. The rebiotix trial is a type of FMT also. Hopefully, the Dificid will do it for you.

MSumner
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Re: Need advice please! c diff infections since October 2019

Postby MSumner » Sat Jan 25, 2020 12:48 pm

Thank you for your responses! I'm on Dificid now for 10 days, and the positive results I've read are making me feel more optimistic about it. I'm also trying the Florastor twice a day as well. Thanks for the suggestions! When I was reading about probiotics, Bio K+ was mentioned as a good one, but it looks like Amazon doesn't ship it cold? Have you ever ordered it through them? I don't know if that affects the quality of it, or if it would be alright to leave it at room temperature? I've also read that VSL#3 is popular, has anyone tried that one too? And should I wait until after finishing the Dificid to start taking another probiotic like that, or is it a better idea to start it while I'm still on it?
I'm sorry for asking so many questions, I just want to do the best I can to prevent another relapse! ^^;
Thank you!!

NanciT
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Re: Need advice please! c diff infections since October 2019

Postby NanciT » Sat Jan 25, 2020 2:40 pm

Another Welcome to the site

Dificid did work for me after months of Vanco. I did fail the first 10 days, but then went on a taper and that was it....finally CDIFF free.

Hang in there, the 10 day course has worked for many on the site, healing can take time. I took VSL#3 and timed it between the DIficid. I continued on it for months and eventually stopped it until I recently went on antibiotics( 5 yrs later) and I am on it again for a few months.

Wishing you the best with the Dificid!

NanciT

MSumner
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Re: Need advice please! c diff infections since October 2019

Postby MSumner » Sat Jan 25, 2020 5:56 pm

Thank you NancyT, I was prescribed 10 days worth of Dificid from the infectious disease doctor (I had to order it twice from my Pharmacy since my insurance only approved 5 days worth at a time for some reason.) My doctor didn't mention anything about a taper? Does that work better?
I've been spacing the Florastor two hours before taking the Dificid, is that like the best way to space them out? Thank you again for all the advice, it's been so invaluable to me!

NanciT
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Re: Need advice please! c diff infections since October 2019

Postby NanciT » Sun Jan 26, 2020 10:41 am

Yes, that is how it is spaced. Talk with your GI about a 30 day taper, it has worked for so many. Many gI's start Dificid with this 30 day taper, I have not read since I have been on this site 5 years any fails of that taper.

We have it listed on the site

NanciT

NanciT
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Re: Need advice please! c diff infections since October 2019

Postby NanciT » Sun Jan 26, 2020 10:43 am

Look right below here on this thread, we have articles you can share with your physician


NanciT

AnxiousJ
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Re: Need advice please! c diff infections since October 2019

Postby AnxiousJ » Mon Jan 27, 2020 4:02 pm

The Bio K Plus pills can also be purchased on Bio K Plus.com or the yogurt type bottles at Whole Foods. I like the pills because they last for a very long time if refrigerated. Hopefully, the probiotics and the Dificid will help and you feel better soon.

MSumner
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Re: Need advice please! c diff infections since October 2019

Postby MSumner » Mon Jan 27, 2020 7:39 pm

If a taper should be necessary, I'll be sure to bring it up with my doctor, thank you! I have the BioK+ capsules now, I wish they supplied more than 15 per package for the price they charge, but if they help then they're worth their weight in gold. The Dificid, along with the Florastor (I think lol) has definitely improved my health so far, I feel almost back to normal again. I've been praying that they'd be enough once I finish the prescription. Thank you again for the suggestions and responding to my questions, I appreciate it a lot!!

D1dad
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Re: Need advice please! c diff infections since October 2019

Postby D1dad » Sat Feb 01, 2020 9:03 am

I’m envious of all you for getting the right meds. I was prescribed flagyl which did work, but the stuff destroyed what was left of my flora. It took a good six months of healthy, clean eating (for the most part) to rebuild the damage done. My wife went in for her annual last week and told the doc that her sinuses have been horrible this winter and of course she wrote a script which my wife adamantly declined. We wonder why this board here.


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