Am I relapsing 5 weeks out ?

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

Re: Am I relapsing 5 weeks out ?

Postby Ali-Mar » Sat Apr 25, 2020 9:01 pm

Yes, I will ask for Dificid. Scripps has many good doctors, but only one of GI there did FMT and he retired Jan 2020. I have another video appointment with another Scripps GI, Dr Walter Coyle next week. He has good reviews, but he does not do FMT. So at some point when I need an FMT, I will have to see another GI :-(

Dr Nedret Copur also a GI and does do FMT, she is with UC San Diego (UCSD), I have an appointment with her on May 14, hopefully she is good and I can stay with her. My insurance covers UCSD as well, so I am fine,

The issues with the doctors here, they don’t know much about C-Diff, another GI doctor that was treating me for C-Diff told me he has done 6 FMT and only 4 out of 6 has been successful. He said,” when FMT tarted it sounded promising but it didn't turn out that way” .... that does not sound right, because everything you read online seems to indicate FMT is very successful
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

beth22
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Re: Am I relapsing 5 weeks out ?

Postby beth22 » Sat Apr 25, 2020 9:53 pm

I don't know about San Diego. The hospitals in Los Angeles, including UCLA do FMT, but honestly, I would not want to be in a hospital setting right now. I would try the Dificid if I were positive. You may not even be positive. It is good to get another opinion. Keep your appointment on the 14th.

Ali-Mar
Long Time Contributor
Posts: 463
Joined: Sat Mar 21, 2020 4:17 pm

Re: Am I relapsing 5 weeks out ?

Postby Ali-Mar » Sat Apr 25, 2020 10:10 pm

Of course, definitely no FMT, will ask for Dificid, I don't think I am event qualified for FMT yet, I think you would need to have 3 recurrences to qualify, I haven’t had one yet :-). I am just lining up the GI doctor for future. We all have to have a GI dr anyway and I need to do a colonoscopy after COVID 19 is all set,that is the mean reason for my search, so might as well find one that can do FMT, just in case, I hope I won’t need it but it good to have one

Do you suggest the regular 200 mg x 2 per day for 10 days or extended -pulse? What is the dosage for the Dificid taper ?
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

Ali-Mar
Long Time Contributor
Posts: 463
Joined: Sat Mar 21, 2020 4:17 pm

Re: Am I relapsing 5 weeks out ?

Postby Ali-Mar » Sun Apr 26, 2020 2:00 pm

Jut an update, I had a very rough Thursday night/ Friday morning, wake up 3 times in middle of night for BM and 3 more BM during the day (6 all), mushy mixed watery Ann at lot of mucus. Also had a rough night Friday night/Saturday morning, get up twice at night for BM and 2 more BM during the day , mix of mushy watery and a lot of mucus again. Strangely last night I didn’t wake up. I had one BM this morning still watery/mushy but mucus is only visible on the tissue, not in the stool! Waiting for my test restful, dropped off the sample yesterday AM. I can see the lab is already processing the samples. Because some of the result are already in my Scripps Portal. Apparently my primary doc included other bacterial pathogens in the test order, such as Shigella, Campylobacter and Salmonella , which all are negative. Might because they are negative I can see see the result but not the C-Diff on my Scripps portal account, or maybe the C-Diff test takes longer. He ordered the Culture for Antigen and Toxin B and he ordered the PCR for the ToxinB Gene - will just have to wait and see
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

Ali-Mar
Long Time Contributor
Posts: 463
Joined: Sat Mar 21, 2020 4:17 pm

Re: Am I relapsing 5 weeks out ?

Postby Ali-Mar » Sun Apr 26, 2020 2:34 pm

My Primary Dr called me just now , I am positive for C-Diff Toxin B and antigen. Dr is sending an order for Difcid 200 mg /day for 10 days to my pharmacy today so I can start taking it as soon as it is available.
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

Caligirl
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Joined: Sun Mar 03, 2019 6:48 pm

Re: Am I relapsing 5 weeks out ?

Postby Caligirl » Mon Apr 27, 2020 12:36 am

So sorry that you’re going through all of this. I’m up in Fresno. My GI was very very nice, does colonoscopies and FMTs, and immediately told me that I should be on Vanco, (not Flagyl like the other doctor prescribed for me). His immediate knowledge about Vanco being better than Flagyl and how it effects breast milk gave me some confidence in him. I did the Vanco treatment and he had me scheduled for an FMT in case it failed. The Vanco worked so I only had to do a colonoscopy (for an unrelated reason). However when I thought I was relapsing I lost some confidence in him based on some information he gave me. But my OB reminded me that no doctor is going to be perfect 100% of the time. (I love my OB and will cry if she ever retires). So if you end up desperate enough, there’s a doctor in Fresno that is pretty good and does FMTs with much success.

P.S. me and my husband love San Diego. It’s our favorite place to go on vacation!


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