Guess who relapsed :')

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alex77
New User
Posts: 24
Joined: Wed Jul 27, 2022 11:08 pm

Guess who relapsed :')

Postby alex77 » Thu Mar 02, 2023 3:39 pm

Hey everyone,

Just wanted to share an unfortunate update. Recently about a week and a half/two weeks ago I was jarred awake by the worst stomach pain I have ever felt & non stop D from about 3am to 5am. I was hoping & praying this was just an IBS flare up but deep down I knew it wasn't.

I messaged my doctor & he told me to just take it easy & see if it subsides the next few days... well low & behold the burning at the top of my stomach, going to the bathroom 7-8 times a day, & feeling like overall garbage all started to come back fairly quickly. I had a spare test sitting at Quest Diagnostics from a previous GI doctor so I decided to just go do it.

Same results came back as when I relapsed: +GDH, +Toxigenic Strain Detected, & -A/B Toxins.

My doctor was kind of upset with me for doing the test because he's one of the "I'd rather go by the symptoms' type of guys which I completely understand, but I'm glad I did it anyway. At first he dismissed it because it was negative for toxins, but the last relapse I had (June 2022) I had the EXACT same test results & I was so sick back then it was terrifying.

So he had me wait a few more days just to see, & my symptoms continued to get worse & worse so he told me to start up Dificid again. I've been on it for a day & a half so far & already my symptoms have calmed down significantly. It feels like a giant cloud has been lifted from my brain too I can't even explain it. I'm praying that he will let me do a taper till I see him next in April & then I can hopefully get on SER-109 since it becomes FDA approved the same day as my appointment ironically.

I know a FMT would be the best option at this point since this is pretty much my third-ish time having C.Diff & I am so mad because I made it SO far into the recovery & then this just happens out of no where. Regardless, I want to try a Dificid taper & SER-109 first & if that fails then I will gladly do a FMT to end this madness because I cannot continue to be stuck in this loop anymore.

Sorry for the wall of text, if anyone has any recommendations or ideas of their own to share I will gladly listen to any of them. I am seeing a international C.Diff specialist in CT so obviously I am beyond grateful for that & I know eventually he is going to get me past this... but it just sucks to feel like I am starting from scratch yet again.

Thank you for reading & I hope everyone is well <3.

GtrGrl
Regular Contributor
Posts: 204
Joined: Tue May 04, 2021 4:43 am

Re: Guess who relapsed :')

Postby GtrGrl » Thu Mar 02, 2023 4:48 pm

I am so sorry, it's all of our worst fear. Glad the Dificid is helping already. I hadn't heard of SER-109; thank god there are folks working on new treatments, just wish it didn't take so long. Good luck with the taper request, although if you get offered an FMT, I personally wouldn't hesitate. As you know, you've beaten this before, you can do it again.
Contracted C Diff from a round of Flucloxacillin, November 2020.

Metronidazole - Metronidazole - Dificid - Dificid - Vancomycin - Upper GI FMT - Vancomycin - Vancomycin - Lower GI FMT

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: Guess who relapsed :')

Postby beth22 » Fri Mar 03, 2023 2:10 am

SER-109 is as close to an FMT as you can get without actually having one. I would definitely try that first if you can.

alex77
New User
Posts: 24
Joined: Wed Jul 27, 2022 11:08 pm

Re: Guess who relapsed :')

Postby alex77 » Mon Mar 06, 2023 12:18 pm

Thank you both for the replies I appreciate it.

I am feeling SO much better on the Dificid again it's actually crazy. I feel like I've had a low level amount of C.Diff that never went away because I haven't felt like this in months. My energy is back, I'm not fatigued, I don't have any urge to go to the bathroom.. etc.

I'm going to call him tomorrow & pretty much beg for an extremely long Dificid taper followed by SER-109 when it gets FDA approved on April 26th. If he says no to either I'm probably going to lose my mind a bit but at this point I can't see him saying no since I have been dealing with this on & off for a year now.

I will keep you all updated, thanks again for taking the time to reply.


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