Back after 5 1/2 years= Dificid pulse? FMT decisions

[musicgirl180]

Hello, all-

Not sure if any of you dedicated folks will remember me. I'm grateful the site is still here. I am surprised I'm back. Over the past 15 years, I had cdiff 4 times. Now 5. Had a FMT in Canada long ago and while my intestines were never the same, I was cdiff free. I ended up with neuro damage, bladder issues, twitching, numbness, dizziness which is now permanent. I believe this was from years of antibiotic not from FMT but it's just a guess.

I got strep throat in Feb. Docs added Flagyl to be safe. Thought I skated through it. Then last week (4 months later), I ended up in the ER. They asked if I thought I had cdiff. I said no way. And I was wrong. They have me on Dificid. Looking at the FMT already. Can do it in Chicago now. One doc uses OpenBiome, the other uses friends or family. I am afraid to make decisions. Maybe I just want to try the meds. I have been looking on here for a Dificid pulse regimen. I put in the search terms but no luck. I never did well with a taper only the pulse. Did anyone else have to choose between friends and the donors at OpenBiome? Can someoneplease point me to the Dificid pulse?

Thank you for those who have stuck around all these years to help the new people. Your dedication amazes me.

[Bobbie]

Yes, I remember you. Aren't you from MT?

I would contact people on the site by PM, read articles, and chexk with doc's to help you make your decision. We cannot make it for you but can support you - as we did last time.

Best of luck..feel better.

[susant]

I did a taper so I'm no help with the pulse. If you did fmt before that's what I'd do again personally! I hate that it's back again! Did you go to the er specifically for diarrhea? What antibiotic did you take for strep?? Hope the dificid does the trick!

[NanciT]

Hi

I am sorry you are going through this again!! I was diagnosed March 2014, I changed GI's a few times after going through the regular Flagyl, Vanco tapers. My GI at the time did not do FMT's and after months I was desperate. The only GI in the area that did was a 4 month wait. So I did a great deal of research, was very sick at the time. I found a research paper with several Dificid tapers. I have tried to find it but have not been able to. You may want to look online for it.
I went on a Dificd Pulse/Taper for 3 months, I must say it was difficult but it did cure me of CDIFF. I have had Post IBS and recovery has been slow.
There are other posters who were on shorter Tapers and have done very well so hopefully they will jump in here also.
If I had the option at the time, I would have done the FMT. The Dificid was very difficult to take.
Hope you find the right answer for you and feel better soon
NanciT

[georgina]

There is a girl on the Faceboob Cdiff support group that pulsed Dificid. She has a compromised imune system and pulsing Dificid was her magic bullet.

[beth22]

I tested positive last year after 4 years c diff free, but I did not take antibiotics to treat it. It was mild - I only had some loose stools. What I did do was home FMT enemas and I used my daughter. I looked into FMT and found a doctor in town who was willing to do it, should the home enemas not have worked, but they did. He also gave me a choice of OpenBiome or using my own donor. I decided that I would use my own donor, just because when I had FMT the first time, I used my husband and I had a LOT of IBS afterwards. With my daughter, who was my second donor for FMT via colonoscopy, I did not have nearly as much. I had a second FMT because I took Cipro for another infection after the first FMT and relapsed.

It is a decision that you have to make. If you don't have a good donor, then the choice is easier, but if you do, then you have to weigh the pros and cons. There are posters here who have used OpenBiome with success. Most of the doctors who do FMT now give that as a choice and at UCLA they ONLY use OpenBiome, I guess because they don't want to go through all the testing for the donor.

Sorry that this happened to you. Hopefully, it is a mild case and the Dificid will knock it out and you won't have to worry about FMT.