Likely relapsing after Dificid. What next?

Since c-diff is a disease of the "lower half", so to speak, we find that many of our members cannot refrain from discussing what comes out the bottom end. If you must do it, please do it here.
NS789
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Likely relapsing after Dificid. What next?

Postby NS789 » Sun May 10, 2020 3:17 pm

Hi everyone. I was first diagnosed with C diff back in early March. I was put on 10 days of Flagyl and I relapsed 3 days after finishing it. I was then put on 10 days of Vanco and I relapsed 7 days after finishing it. I was finally just recently put on 10 days of Dificid. I finished it 13 days ago and for the past two days I have suddenly been hit with frequent watery D and rumbling/burning-feeling bowels. I am so discouraged. I felt so great on the Dificid and really thought it was the magic bullet, but these feel like typical C diff symptoms all over again.

I guess I will call the doctor tomorrow. My plan is to ask for either a Vanco taper or a Dificid taper. My feeling is that I haven't been on any pills long enough to fully beat this thing. I'm getting really nervous as I kind of saw the Dificid as a last resort after the Flagyl and Vanco failed :(.

Does anyone have any different thoughts on what I should do next? Would a Vanco taper or a Dificid taper be more effective?

Ali-Mar
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Joined: Sat Mar 21, 2020 4:17 pm

Re: Likely relapsing after Dificid. What next?

Postby Ali-Mar » Mon May 11, 2020 12:16 am

NS789,
So sorry to hear you are having problem, hopefully it is just PI-IB and not a recurrent. I am not an expert, but I would get tested first before starting any treatment. Watch the following video clip of C-Diff experts discussing the best treatment option for the recurrent CDI. They say that Dificid taper is the best option and it reduces the probability of recurrent to only 5%. There are many other video clips of the same doctors discussing C-Diff, very useful info.

https://www.mdmag.com/peer-exchange/bes ... -infection

In this clip they are referring to a Dificid taper that because of cost saving is based on using only 20 pills, since each bottle comes in 20 pills. I didn't do that, I took my regular 10 day dose of Difcid first and I am using a second bottle for the taper, I am on my 4th day of taper now.

I followed the same pattern as you, I started with the Flagyl, than Vanco , I relapsed 4.5 weeks post Vacno. And now, I am on Dificid Taper.

The following is another study, but a very small study using Dificid taper on 12 patient with 0 recurrences
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4281782/
Male 54, 1st time contracted C-Diff Infection on Feb 5, 2020, diagnosed on March 2nd using Toxin B Gene PCR test
Took Flagyl for 8 days, Vanco for 10 days, relapsed 4.5 weeks post Vanco. Started Dificid Taper on April 26

NS789
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Posts: 19
Joined: Thu Apr 16, 2020 12:14 pm

Re: Likely relapsing after Dificid. What next?

Postby NS789 » Mon May 11, 2020 12:51 pm

Hi Ali,

Thanks so much for the links! This info helps me a lot actually. I can't speak to my doctor until tomorrow but I'm definitely going to ask about a Dificid taper. Based on my symptoms and the "3x3 rule," I'm quite certain that I have relapsed so I want to get on top of it quickly. And hopefully get rid of it once and for all!

Dificid is pricey for me, even with a plan. But if the taper works, it'll be worth every cent!

Are you still doing well on your taper?

Ali-Mar
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Posts: 200
Joined: Sat Mar 21, 2020 4:17 pm

Re: Likely relapsing after Dificid. What next?

Postby Ali-Mar » Mon May 11, 2020 3:05 pm

Sorry to hear that, I hope the Dificid taper will work out for you.

It is my 5th day on the taper, and it seems to be working so far. I had many symptoms similar to PI-IBS, and started talking Manuka Honey for it since Saturday afternoon, and it seem to be helping. My Manuka honey is 15% UFM, but I will get a 20% UMF next time as I read is better for C-Diff and IBS.

We shouldn't have been given the Flagyl by our doctors, at first place, it is no longer recommended since 2017. The following link has 12 video clips of same C-Diff experts discussing the treatment recommendation etc. It is very educational and great to watch. It is 4 pages and each page has 3 video clips, you need to click on the individual pages on at the time and on video clips one at the time to see them all ( it does not auto play the next clip).

https://www.contagionlive.com/peer-exch ... infections

Are you symptoms similar to when you first contracted C-Diff or much more mild? For me during the relapse I had a lot mucus same as when I contracted C-Diff
Male 54, 1st time contracted C-Diff Infection on Feb 5, 2020, diagnosed on March 2nd using Toxin B Gene PCR test
Took Flagyl for 8 days, Vanco for 10 days, relapsed 4.5 weeks post Vanco. Started Dificid Taper on April 26

NS789
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Posts: 19
Joined: Thu Apr 16, 2020 12:14 pm

Re: Likely relapsing after Dificid. What next?

Postby NS789 » Mon May 11, 2020 8:28 pm

I'm glad you're doing well on your taper.

It's interesting that you're using Manuka honey. I've read good things about that. I've been taking Oil of Oregano capsules since I started relapsing a few days ago (because I had nothing to lose) and I actually feel like my symptoms have gotten a bit milder. It could just be a fluke but who knows.

Ali-Mar
Regular Contributor
Posts: 200
Joined: Sat Mar 21, 2020 4:17 pm

Re: Likely relapsing after Dificid. What next?

Postby Ali-Mar » Tue May 12, 2020 11:59 am

NS789, how did it go with you doctor appointment? did you do a test to confirm your suspicious?
Male 54, 1st time contracted C-Diff Infection on Feb 5, 2020, diagnosed on March 2nd using Toxin B Gene PCR test
Took Flagyl for 8 days, Vanco for 10 days, relapsed 4.5 weeks post Vanco. Started Dificid Taper on April 26

NS789
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Posts: 19
Joined: Thu Apr 16, 2020 12:14 pm

Re: Likely relapsing after Dificid. What next?

Postby NS789 » Tue May 12, 2020 8:09 pm

Hi Ali. No test this time. Based on my symptoms, we're pretty confident that the c diff has returned. My doctor has put me on 10 days of Dificid again. I asked about doing a taper and she wants to research that option further with a pharmacist. She admitted that she didn't have much knowledge about Dificid as she had never prescribed it prior to my case. I told her about the studies I've read online and she is going to get back to me once she talks to the pharmacist. She seemed to have some concern about me becoming resistant to Dificid if I take it for too long. I'm not sure if that's a valid concern or not.

She has also referred me to a GI specialist. I have only dealt with my family physician so far and where I've had a few recurrences, it's probably a good idea to see an expert.

I've now taken two Dificid pills and just like last time, I'm already feeling better.

Ali-Mar
Regular Contributor
Posts: 200
Joined: Sat Mar 21, 2020 4:17 pm

Re: Likely relapsing after Dificid. What next?

Postby Ali-Mar » Tue May 12, 2020 8:45 pm

Sorry to hear you relapsed, I am slo seeing a GI now, he is the one added the taper to my original rx for me. Also for my family doctor was his 1st time prescribing the Dificid, he rx the original 20 pills. I wanted to see a GI in case if I required FMT if the Dificid taper didn’t work or if needed a Colonoscopy etc. Having said that based on most of the studies the odd of relapse after the Dificid taper is very low around 5%. FYI you can go to Openbiome website to see the GI doctors in your area that do FMT
Last edited by Ali-Mar on Fri May 15, 2020 10:16 pm, edited 1 time in total.
Male 54, 1st time contracted C-Diff Infection on Feb 5, 2020, diagnosed on March 2nd using Toxin B Gene PCR test
Took Flagyl for 8 days, Vanco for 10 days, relapsed 4.5 weeks post Vanco. Started Dificid Taper on April 26

Ali-Mar
Regular Contributor
Posts: 200
Joined: Sat Mar 21, 2020 4:17 pm

Re: Likely relapsing after Dificid. What next?

Postby Ali-Mar » Tue May 12, 2020 9:26 pm

I am also new to this and learning, but based on the video clip I shared in this thread, the ID doctor expert on C-Diff in Boston and the following study suggesting tapering using 20 pills that comes in one bottle. I didn't do it because I thought since I had Flagyl and Vanco before, i am at higher risk, because. I hear that Flagyl and Vanco, specially flagyl wipes out all the good bacteria’s in your gut and leave you defenseless

https://www.infectiousdiseaseadvisor.co ... infection/
Male 54, 1st time contracted C-Diff Infection on Feb 5, 2020, diagnosed on March 2nd using Toxin B Gene PCR test
Took Flagyl for 8 days, Vanco for 10 days, relapsed 4.5 weeks post Vanco. Started Dificid Taper on April 26

NS789
New User
Posts: 19
Joined: Thu Apr 16, 2020 12:14 pm

Re: Likely relapsing after Dificid. What next?

Postby NS789 » Tue May 19, 2020 5:53 pm

So I'm almost done my second round of a 10-day course of Dificid. Hopefully this will finally do the trick and I won't need further treatment. But my family doctor had a discussion with both a GI and an ID and they both recommended a long Vanco taper (over 3 or 4 months) in the event that I relapse for a fourth time.

I just wanted to share this advice as I was a bit surprised. I expected them to recommend a Dificid taper. But both specialists seem to think a Vanco taper would be the best option for a stubborn case.

Ali-Mar
Regular Contributor
Posts: 200
Joined: Sat Mar 21, 2020 4:17 pm

Re: Likely relapsing after Dificid. What next?

Postby Ali-Mar » Tue May 19, 2020 11:34 pm

Goor luck NS789, I hope you won’t need anymore treatment. Not too many doctors seem to know how to prescribe Dificid taper, and there aren’t a lot of info online
Male 54, 1st time contracted C-Diff Infection on Feb 5, 2020, diagnosed on March 2nd using Toxin B Gene PCR test
Took Flagyl for 8 days, Vanco for 10 days, relapsed 4.5 weeks post Vanco. Started Dificid Taper on April 26


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