Recovered after 5 relapses!

We spend a lot of time talking about the bad news in this discussion group - here's the spot for the good news. If you've had c-diff and are now well, please tell us about it here.
NS789
Regular Contributor
Posts: 119
Joined: Thu Apr 16, 2020 12:14 pm

Recovered after 5 relapses!

Postby NS789 » Fri Feb 05, 2021 3:32 pm

Hi everyone,

For those of you who followed my C diff battle throughout 2020, I wanted to provide an update to let you know that I am finally considered recovered by my ID specialist. I have been symptom-free since November 5th and have been feeling great. I have returned to having normal BMs once per day. I have only had a couple of very mild flare ups of IBS and that's because I've tried to reintroduce some fibre-rich foods back into my diet too soon (like raw veggies, which I love but don't love me back yet!). Otherwise, I have been able to eat all of the things that I used to before C diff.

I can't express how relieved I am. It was a long and very difficult year, and after 5 relapses and several rounds of antibiotics (as summarized in my signature), I truly thought I would never beat it. I was the most depressed and discouraged that I've ever been in my life. And due to Covid as well as lack of access in my country, FMT wasn't available. So I was very quickly running out of options.

In the end, it seems like the long Dificid taper (my option of last resort) was what finally did the trick. Thanks to Nanci T for reassuring me that it would work. You were right!

So if there's anyone out there who is suffering through multiple relapses, I hope my success story can give you some hope. You can beat this! And if you need someone to talk to, please don't hesitate to reach out to me.

I did have a scare with 4 straight days of classic C diff symptoms around Halloween (about 2 weeks after finishing the Dificid taper) that *may* have been a 6th relapse, but it resolved quickly on its own so I can't say for sure. My ID specialist said it could have been the C diff trying to come back, but at that point, after all the antibiotics, it was mild enough that I beat it on my own. I will note that I did test positive again for toxins at this time and my GP wanted me to do another Vanco taper, but I opted not to treat as my symptoms resolved. My ID specialist said I did the right thing. People can test positive for a long time and you should only treat based on symptoms, not test results.

Anyway, thank you all so much from the bottom of my heart for your advice and sympathy throughout this very traumatic ordeal. I can't tell you how much your support has meant to me. It kept me going through some very dark days. I am so grateful for this site. Much love to you all xo.

Ps - for anyone wondering about my current probiotic regimen, I take 1 tbsp of The Cultured Coconut (a potent coconut kefir) everyday as well as 2 capsules of Saccharomyces Boulardii. I imagine I will stick with this regimen for a long time as it seems to work well for me.
32 y/o female. Got C. diff in Feb. 2020. Prescribed Flagyl (10 days), then Flagyl again (4 days), then Vanco (10 days), then Dificid (10 days), then Dificid again (10 days), then a Vanco taper (5 wks), then a Dificid taper (2 mths) and finally recovered.

healthys
Regular User
Posts: 44
Joined: Sun Nov 01, 2020 9:26 pm

Re: Recovered after 5 relapses!

Postby healthys » Fri Feb 05, 2021 5:36 pm

Yay! Amazing success story and thank you for letting us all in , into your journey and struggles with this :)
Wishing you continued good health!!

poppy86
Regular Contributor
Posts: 178
Joined: Sun Mar 29, 2020 10:23 pm

Re: Recovered after 5 relapses!

Postby poppy86 » Sun Feb 07, 2021 1:05 pm

NS789, I'm so happy to hear that you're recovered and doing well! Thank you for sharing with us. Wishing you continued good health.

Ali-Mar
Long Time Contributor
Posts: 429
Joined: Sat Mar 21, 2020 4:17 pm

Re: Recovered after 5 relapses!

Postby Ali-Mar » Tue Feb 09, 2021 12:08 am

NS789, that is an amazing story. I am very happy for you and thank you for the update, I was wondering how you were doing.

I am just curious what was your Dificid taper dosage?
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

NanciT
Long Time Contributor
Posts: 2862
Joined: Thu Sep 18, 2014 12:01 pm

Re: Recovered after 5 relapses!

Postby NanciT » Tue Feb 09, 2021 12:39 pm

We LOVE great news on the site and appreciate you coming back to update us!! It's so important for others to know there is light at the end of the tunnel and they WILL get well. Each of us has our own journey and I am so happy to hear you are feeling well and recovered!!

Wishing you the best!

NanciT

NS789
Regular Contributor
Posts: 119
Joined: Thu Apr 16, 2020 12:14 pm

Re: Recovered after 5 relapses!

Postby NS789 » Tue Feb 09, 2021 2:44 pm

Thank you all for the good wishes!

Ali-Mar, my Dificid taper was kind of my own lol my GI specialist hadn't dealt with Dificid before and I think he was kind of winging it. He didn't actually prescribe a Dificid taper, but rather two full months of 2 pills per day. But from all that I had read about the benefits of tapers, I decided to taper my last 2 weeks of pills. So basically, I took 2 pills per day (AM and PM) for a month and a half, and then I dropped it down to 1 pill a day for a week, and then 1 pill every other day for a week.

I know two full months of Dificid seems like a lot and isn't typical, but I'm glad he prescribed it for that long. I had a very stubborn case and I think that long course of Dificid is what finally beat it.
32 y/o female. Got C. diff in Feb. 2020. Prescribed Flagyl (10 days), then Flagyl again (4 days), then Vanco (10 days), then Dificid (10 days), then Dificid again (10 days), then a Vanco taper (5 wks), then a Dificid taper (2 mths) and finally recovered.

roy
Administrator
Posts: 4001
Joined: Sat Aug 02, 2014 1:05 am

Re: Recovered after 5 relapses!

Postby roy » Tue Feb 09, 2021 2:53 pm

Wow!
60 days of dificid costs over $25,000.
Hope you had good insurance!
Not sure if that would have been advisable either.
Dificid has never been tested for an extended course like that.
Glad it worked but your GI took a risk prescribing like that.

NS789
Regular Contributor
Posts: 119
Joined: Thu Apr 16, 2020 12:14 pm

Re: Recovered after 5 relapses!

Postby NS789 » Tue Feb 09, 2021 2:58 pm

You're right, Roy! It was definitely costly. Fortunately, I have a plan, but I still spent a few thousand dollars. I'm lucky that I had the means to afford it. I know there are lots of people that can't afford it and I certainly sympathise. It's truly a shame that it's inaccessible to many. It really is an effective drug.

I also agree that it may have been a risk, but at the same time, desperate times called for desperate measures. Without the option of FMT, I think we (myself and my doctors) were grasping for a solution. Thankfully this worked!
32 y/o female. Got C. diff in Feb. 2020. Prescribed Flagyl (10 days), then Flagyl again (4 days), then Vanco (10 days), then Dificid (10 days), then Dificid again (10 days), then a Vanco taper (5 wks), then a Dificid taper (2 mths) and finally recovered.

Ril
Long Time Contributor
Posts: 1762
Joined: Sat Oct 27, 2012 2:45 pm

Re: Recovered after 5 relapses!

Postby Ril » Tue Feb 09, 2021 6:12 pm

Wonderful news and glad you posted. It is great for others who are beginning to get discouraged to see that there is hope...
I wish you continued good health!

Rita

Ali-Mar
Long Time Contributor
Posts: 429
Joined: Sat Mar 21, 2020 4:17 pm

Re: Recovered after 5 relapses!

Postby Ali-Mar » Wed Feb 10, 2021 11:22 pm

NS789, thanks for the info, and I am glad you are doing better. I agree. I also think that the long course of Dificid is what finally beat it for you. When I relapsed after the Dificid taper, looking back, I wish I just took 2 pills per day for 30 days instead of tapering down after 10 days since I had 3 bottles of Dificid
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020


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