3 Day Rule Before Testing

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roy
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Re: 3 Day Rule Before Testing

Postby roy » Tue Jul 31, 2018 12:53 pm

Your Dr does not understand how to treat c.diff.
The ONLY IV antibiotic for c.diff is flagyl (flagyl is no longer recommended for c.diff but is still used).
If they suggest any other IV antibiotic they are wrong.
It is given alongside oral vanco if a person is severely sick and in danger of death.
IV antibiotics are a last ditch attempt, not standard treatment.
Your nowhere near that sick so if they suggest IV antibiotics get another opinion, FAST!

Ajs
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Re: 3 Day Rule Before Testing

Postby Ajs » Tue Jul 31, 2018 1:54 pm

Wow! I really appreciate that Roy! I’m in the waiting room now. I’ll be prepared to question the IV infusions. So IV vanco doesn’t help cdiff? I’m not sure why the GI had to refer me to an ID specialist for this...

roy
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Re: 3 Day Rule Before Testing

Postby roy » Tue Jul 31, 2018 2:36 pm

IV vanco is no use whatsoever for c.diff.

Ajs
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Re: 3 Day Rule Before Testing

Postby Ajs » Tue Jul 31, 2018 2:38 pm

Just came out. He’s going with a Vanco taper that will lead up to the FMT. Now I have to decide if I want to shorten the taper course to work with the FMT scheduled on August 23, or push out the FMT so that I can fit in a longer taper. He has pretty much left this up to me. Does anyone have any thoughts on this?

Roy, you are correct! And I was happy to hear the doctor say the same thing. He seems to be pretty current and in line with what I’ve been reading on this form. He was actually very impressed with what I knew coming in. This is all thanks to you guys!

roy
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Re: 3 Day Rule Before Testing

Postby roy » Tue Jul 31, 2018 3:07 pm

I would go with 21 days of vanco and stop on 21st Aug.
Many Drs would have you on a full vanco dose and not taper.
Doing a taper is not normal if an FMT is planned.

Ajs
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Re: 3 Day Rule Before Testing

Postby Ajs » Tue Jul 31, 2018 3:50 pm

So you don’t think there would be an advantage to doing the taper to catch the dormant spores? I’m still learning about the principle behind the taper...

He’s got me doing 7 days 4x’s a day, 7 days 2x’s a day and 7 days 1x a day ending on the 21st

roy
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Re: 3 Day Rule Before Testing

Postby roy » Tue Jul 31, 2018 5:01 pm

Sounds like a plan, but not one I have seen before.
The first 7 days should resolve the symptoms.
If symptoms return when you reduce the vanco keep in mind that going back up a dose might be needed.
The FMT is what your aiming at as the "cure" and being symptom free (no active c.diff) before the procedure gives it the best chance.

Ajs
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Re: 3 Day Rule Before Testing

Postby Ajs » Tue Jul 31, 2018 5:38 pm

Thanks Roy! I’m tempted to suggest an extra week of the Vanco. And if I still have symptoms after the first week I definitely will! He’d probably do that if I asked. He was very nice to deal with. He was impressed with my current knowledge, and it’s all thanks to you guys!!!

Ajs
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Re: 3 Day Rule Before Testing

Postby Ajs » Sat Aug 04, 2018 2:43 pm

Today marks the 4th day on the short Vanco taper leading up to the FMT. By day two I could tell a significant difference. Yesterday and today have been even better as far as digestion issues and D. I have been experiencing what I believe to be side affects from the Vanco, and perhaps other side affects from the cdiff itself. Tingling in arms, fatigue etc. also, still dealing with this nagging, dull pain in my lower right side. More of a burning sensation. I must admit, depression is becoming a big issue. Something I’ve never really dealt with at this level.

Question: if my stomach can handle eating at a restaurant, am I safe to do so? Like grilled fish/chicken with veggies? Or is it more of a sanitary concern eating out? My family is really struggling to adapt to my current battle

beth22
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Re: 3 Day Rule Before Testing

Postby beth22 » Sat Aug 04, 2018 4:58 pm

There is no reason not to eat at a restaurant. I never stopped doing so when I had c difficile. As long as you are not having D, enjoy.

Ajs
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Re: 3 Day Rule Before Testing

Postby Ajs » Sat Aug 04, 2018 5:15 pm

Thanks Beth22. So no worries about reinfection to myself?

Kuro
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Re: 3 Day Rule Before Testing

Postby Kuro » Sat Aug 04, 2018 5:34 pm

It's never a 100% chance that you won't pick something up if you go out to eat, but that's true of basically anything you can pick up, not just CDI. Faced the same before the infection, too! :) The Vanco is in you to act as a bit of a shield for the moment, so I'd go enjoy yourself like Beth said if you're up to it. No D means you're no longer a danger to others and things are under control in your gut. Take care to order plain!

The FMT won't be an instant cure. That, I seldom hear of; most have a recovery period like any of the other treatments. Once you've recouped enough, well, stuff like this is what we have to risk facing if we don't want to end up trapped in our houses! Your family will come to understand, though, and you'll have many more chances to go out like this as things improve in the future. Keep in mind that it's not forever.

I hope everything goes well for you regarding treatment!

Ajs
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Re: 3 Day Rule Before Testing

Postby Ajs » Sat Aug 04, 2018 8:23 pm

Thanks Kuro for the encouragement. My gut feels better, but this fatigue is killing me! I feel it’s the Vanco more than the cdiff. But it’s hard to say. It IS nice to think that some day things will be back to normal...

Kuro
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Re: 3 Day Rule Before Testing

Postby Kuro » Sat Aug 04, 2018 8:43 pm

One day, everything will be better for us both. Maybe not the old normal, but a new normal. :)

At just about five months out from Vanco, some symptoms have gone, others are still nipping at my heels. I just try to hold it together and keep the faith that I'm healing with time. Recovery can be smooth, but often, it can also be rocky!

Ajs
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Re: 3 Day Rule Before Testing

Postby Ajs » Sat Aug 04, 2018 9:22 pm

You are very right! It’s certainly one day, one week, and one month at a time! My prayers are with you...


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