Opinions Please

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lorac52
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Joined: Thu Feb 01, 2018 6:20 pm

Opinions Please

Postby lorac52 » Tue Nov 27, 2018 6:55 pm

Hello again,
I sure hope I’m posting under the right topic.
I recently moved from Fla to Ohio, and started my journey with CDiff in the sunshine state. I just established with a new GI doctor here who has my Fl medical records. I have battled CDiff since Feb of this year. I have been on Flagyl(initial), vanco & vanco taper, and lastly a vanco taper with 10 day Dificid chaser Which I completed on 11/7. The new doc retested me 9 days after stopping the Dificid. My results came back Negative for both toxins. He also referred me to an ID doc who specializes in CDiff - my appt is 12/04.
I’m afraid that the result was a false negative, because I still have Symptoms: gurgling, stomach cramps,D within 1-2 hrs of eating- every day. I have a script for 10 days of vanco but I have not taken it because I don’t want to start this all over again if I don’t have to- but these daily symptoms are worrisome. Would like to hear if anyone had similar experiences. I have contacted my new Doc to get his opinion and I do have that upcoming appt. next week. The symptoms are just a little different from what I experienced before, though similar- more like an exacerbated IBS- so confused.
I was referred to the ID doc because she specializes in FMT which the GI doc says would be next for me.

beth22
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Joined: Tue Apr 07, 2009 2:23 pm

Re: Opinions Please

Postby beth22 » Wed Nov 28, 2018 2:12 am

I would definitely wait to talk to the ID doctor before starting vanco. Vanco might even make things worse if you don't have c difficile. I had a very bad case of SIBO after c difficile and wound up taking Xifaxan. Talk to the ID about that possibility, but many have other types of IBS. There is a product called EnteraGam that is for IBS-D. You need a prescription for it. It is classified as a medical food. You mix it in water or juice and drink it. It is supposed to heal the gut and helps to take out toxins. Ask about that too. It has helped some of our posters.

georgina
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Joined: Sat Sep 12, 2015 10:07 am

Re: Opinions Please

Postby georgina » Wed Nov 28, 2018 2:19 am

Are you experiencing frequent D or it just 1-2 BM per day after the meal? If Cdiff would be active you would have D all day long , and night with abdominal pain , urgency , and generally feeling very ill. It's true that the old toxins test are not very reliable but if the symptoms are not too bad you shouldn't be tested at all. The gut needs time and a very bland diet to heal. If you are not keeping a diet you might wanna look into it .There are a few diet tips under CDI-nutrition that you can read.Are you taking any probiotics?

lorac52
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Posts: 8
Joined: Thu Feb 01, 2018 6:20 pm

Re: Opinions Please

Postby lorac52 » Wed Nov 28, 2018 11:23 am

Thank you for responding. I received a reply from the new GI doc this morning and as expected he wants me to wait until I see the ID doctor before doing anything else.
In the beginning (a yr ago) and fortunately for me, I never did have watery stools or blood and never went all day- my worst time was first thing in the morning, urgency and cramping after meals, and then better at night...even got hungry. What alerted me to the fact that something was wrong and what prompted me to seek medical attention was the morning thing and nausea and bloating- a definite change from my “normal” IBS-D. Also as a nurse I frequented nursing homes in my work and had had two instances of taking antibiotics within the year prior to my diagnosis of CDiff.
So I guess I will endure until I see the ID doc on 12/6 and see what she has to tell me. From how I’m feeling I believe its back or perhaps never left. Again thanks for getting back to me.


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