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Re: Dificid vs. FMT

Posted: Tue Jun 13, 2017 10:24 pm
by christyn
Cnatra...good luck with your doctors appointment and thanks for the info.

Re: Dificid vs. FMT

Posted: Wed Jun 14, 2017 12:23 am
by georgina
Good luck tomorrow with the infusion hopefully it will be the magic bullet. Keep us updated!

Re: Dificid vs. FMT

Posted: Thu Jun 15, 2017 10:33 pm
by cnatra
Thanks for the positive thoughts !!

Well the Zinplava infusion has been basically trouble free so far. I had some minor irritation where the needle was in my arm for a little over an hour.

Other than that no side effects at all that I can feel in the first 24hrs.

Again I feel like the Dificid is definitely going after the C Diff differently than the Vanco. It seemed like I almost always had telltale C Diff symptoms of some kind while on the Vanco at the end.
I feel like the Dificid has really eliminated any overt symptoms of C Diff.

I would say I felt a few different pangs in my lower abdomen yesterday afternoon but I've been trying to figure out all the new & different pangs in my gut for about 6 months now.
(maybe a little more on the right side ascending colon rather than the usual descending & sigmoid colon?)

Hard to know if it was new pangs or same old - same old pangs that come with fighting C Diff, LoL.

As of now the plan is to transition to 1 Dificid a day on Sunday for 10 days then 1 pill every other day for the last 10 pills.

I do have a 3rd bottle as well as one refill so I'm going to discuss the idea of a longer taper with the GI & ID docs next week.

Still drinking Kefir, eating boiled potatoes, sauerkraut, taking Florastor and other probiotics. Oh I'm sprinkling some of the green banana flour into my yogurt too.

So far so good though !!

Re: Dificid vs. FMT

Posted: Fri Jun 16, 2017 12:20 am
by georgina
Glad the infusion was well tolerated , can't wait to try it myself. Crossing fingers that this treatment regime will put an end to this nightmare.

Re: Dificid vs. FMT

Posted: Sat Jun 17, 2017 9:15 am
by cnatra
I ended up having some mild D Thursday night into Friday morning. It was not the usual C Diff D though so I think it's from the Zinplava or my gut reacting to my diet.
That has diminished through Friday but now lots of gas.

I guess I should go post in the TMI forum to discuss more.

Re: Dificid vs. FMT

Posted: Sat Jun 17, 2017 9:29 am
by Ril
Wait and watch. Remember what your gut has been through and don't expect your stools to be your old "normal".
I don't know what you can expect from the infusion and whether this can be a side effect, but in recovery PI IBS is common and with it comes gas, some d and unsettling stool patterns. Unless you go back to the watery d I wouldn't start worrying, and if so, then check in with your dr.

You might want to ease up on the sauerkraut. It is extremely gas producing.

Hope this does it!
Rita

Re: Dificid vs. FMT

Posted: Sat Jun 17, 2017 9:58 am
by roy
One thing you have got to understand about Zinplava is the way it works.
It's not a c.diff treatment, it is VERY similar to a vaccine.
It works by boosting your immune system so theres no host (you) response to toxin B.
That means a test might and probably will still be positive but you don't have typical symptoms because your immune system recognises the toxin and DOES NOT REACT AND CAUSE D. That is exactly how it's supposed to work!
It probably makes colonisation more likely but that is then a form of 100% normal gut flora.
I would think that testing for cure after using Zinplava is even more a no no than before and the chances of it being positive would be VERY VERY high.

Re: Dificid vs. FMT

Posted: Sat Jun 17, 2017 4:25 pm
by midway
roy wrote:
> It works by boosting your immune system so theres no host (you) response to
> toxin B.
> That means a test might and probably will still be positive but you don't
> have typical symptoms because your immune system recognises the toxin and
> DOES NOT REACT AND CAUSE D. That is exactly how it's supposed to work!

Keeping on this topic, does this mean that without responding to the toxins of the C diff bacteria, you wouldn't need to treat and it would be allowed to run rampant? Would overgrowth of C diff bacteria inhibit the rest of your normal gut flora from populating like normal? Although the normal flora wouldn't be needed to keep C diff in check, it should be helpful for digestion and such.

Re: Dificid vs. FMT

Posted: Sat Jun 17, 2017 5:03 pm
by roy
It's the exact opposite. Nature intends that the c.diff is kept in check and your normal flora will always do just that.
You have already been vaccinated against many diseases. You still get them but they do not make you ill.
Tetanus for example. (DRUM ROLLLLLLLL) is Clostridium tetani!

Re: Dificid vs. FMT

Posted: Mon Jun 19, 2017 1:04 am
by georgina
Have you finished the Dificid course? The gut will start to recover after you are off meds , abnormal stools are to be expected , gas also , try not to panic and think positive , you had a great treatment plan and you will get well.
As Rita said , ease up on the fermented food , they can give you tons of gas and loose stools. I cannot tolerate even a small amount of sauerkraut , it puts me on the toilet in less then 15 minutes.

Re: Dificid vs. FMT

Posted: Tue Jun 20, 2017 10:29 pm
by Zapper
For my last treatment we did what my GI considers the most aggressive treatment of a 10 day dificid course off 2 days followed by a FMT. I also purchased donor stool thru OpenBiome twice. My 1st FMT failed so we used an alternate donor the second time around.
So far I am 1 day away from 1 month c diff free. The longest I've ever gone in the past was 12 days!
The one negative is that I don't know if it was the dificid or the FMT or both that finally kicked it since I never tried a dificid taper.
But at this point after 19 months I could care less what did it as long as I am symptom free!!!

Re: Dificid vs. FMT

Posted: Tue Jun 20, 2017 10:33 pm
by Ril
Cntra,
Any update on your progress?

Re: Dificid vs. FMT

Posted: Mon Jun 26, 2017 2:57 am
by cnatra
Sorry I've taken so long with a follow up!!
We've had a lot going on including some unplanned traveling for family issues.

I'm feeling pretty good as I've transitioned this last week from the initial Dificid dosing of 2 pills a day for 10 days then 1 pill a day for 10 days now the last 10 pills are every other day .

The post on 6/17 in regards to the D I was having I was just trying to share any side effects I thought the Zinplava might be causing . It was nothing like the typical C Diff D.

The occasional mild D and tons of gas seemed to persist for that week but maybe the first round of Dificid and different things I was trying in my diet (sauerkraut) contributed .

I'm feeling as positive and as good as I've felt in months. Probably the best since first getting a correct diagnosis and the initial Vanco dosing in February.

Also Roy in reference to the way Zinplava works.
The way the ID doc described it it's essentially a synthetic antibody that binds to and neutralizes toxin B .
So I guess as long as the Zinplava stays in one's body then any symptoms from the toxin B would be eliminated?

I've found a local BBQ restaurant with great potato salad I've been buying in quarts :)
I'm eating some white beans regularly also.

I picked up some BioK to add to my probiotic rotation as well.

I guess the million dollar question will be when I come off the Dificid if there's enough good bacteria in my gut to normalize my colon's microbiota ??

Well that and if the Difiicid has killed off any remaining spores that have been lingering after all the Vanco?

It does seem like I don't have any of the telltale signs left of C Diff. No distinct odor etc. Not much M and mostly normal solid stools.

Dificid should be more affordable and available for all the C Diff sufferers in the world IMHO !!

I'm keeping my fingers crossed !!!

Re: Dificid vs. FMT

Posted: Mon Jun 26, 2017 3:13 pm
by beth22
Good luck. Let us know how you progress.