Xifaxan

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Lid49
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Xifaxan

Postby Lid49 » Mon Nov 19, 2018 9:23 pm

Hi Melanie, I hope you are doing ok on xifaxan.
Not able to send messages.
Lidia.

MKW
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Joined: Mon Sep 26, 2016 9:49 am

Re: Xifaxan

Postby MKW » Tue Nov 20, 2018 12:39 am

Hi! Am still doing ok. I will finish Friday. I had one bad day on day 7 of meds, but improved the next day.
I have definitely had symptoms improve at this point.
I just keep hoping for improvement that will last.
I hope you are tolerating your current meds enough to keep taking them!
Thanks for checking on me :-)

Lid49
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Re: Xifaxan

Postby Lid49 » Tue Nov 20, 2018 5:01 pm

I have few very bad days but today is better.
Happy for you hope is working. Increase food and lichuid that will help.
Lidia.

MKW
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Re: Xifaxan

Postby MKW » Tue Nov 20, 2018 9:45 pm

I keep thinking what do I do when I am done taking it... motility drugs are recommended sometimes.
My current doctor has not recommended anything. But I am seeing the specialist who did my FMT on 12/3 that is out of town, to consult with her.
Has your practitioner talked about what you should do after treatment to keep it from coming back?
I guess I hadn’t thought that far... I didn’t even think I’d make it this far trying to treat.
I can’t tolerate taking any probiotics myself. I wish I could. It would help with my c Diff fears.
-Melanie

Lid49
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Re: Xifaxan

Postby Lid49 » Wed Nov 21, 2018 6:33 am

One step at the time. I think you have to wait an see.
I think we can heal. I will my Dr on next Monday to see next step.
Lidia.

Lid49
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Re: Xifaxan

Postby Lid49 » Wed Dec 05, 2018 12:29 pm

Hi Melanie, how are you after xifaxan?
Still not able to use I'm.
Lidia.

MKW
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Re: Xifaxan

Postby MKW » Wed Dec 05, 2018 8:06 pm

Hi, I had a lot of improvement during taking it and after. At least for now, but you know how that goes. I could be worse tomorrow! I had a few days while taking it I had D, which was strange. Following it my BM's have been basically normal, but I have excessive belching, and get a lot of mid-abdomen pain, then belch a lot.
It's weird. I have not tried to reintroduce any new foods.

So I don't think I'm "cured". I went to see the doctor that did my FMT at the University of Va on Monday for a consultation.
She thinks I should not worry about developing C Diff following taking the Xifaxan, but of course I'm worried.
I had forgotten how AFRAID of C Diff I really am. It is like a demon to me. It strikes so suddenly and severely, well at least it did for me.

They have ordered a gastric emptying scan on me. And then they want to do a CT scan next. The UVA doctor says this is caused by slow motility of the small bowel, and that we need to figure out what is happening with me that has led to the SIBO. She says she had found with subsequent Xifaxan prescriptions, that people have decreased effectiveness. She thinks over time my SIBO will just come back unless we treat the underlying cause.

That's about it at this point. I just pray every day I wake up that I will not develop c diff and won't get worse!!!!!

SIBO is still just not completely understood, and whether people take Xifaxan or the herbal antimicrobials, i think it's not addressing the real problem.
Maybe our gut motility is just damaged after c diff for some of us, and it leads to problems like this.

That doctor said I have "PTSD of the gut". She said people with post-infectious IBS do EVENTUALLY improve. She said she has found about 20% of people develop PI-IBS after C Diff. And she has treated A LOT of people with c diff. She has run an FMT clinic for about 4-5 years.

I hope you have had improvement with your treatment. Let me know how you have responded.

Take care :-)

Lid49
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Re: Xifaxan

Postby Lid49 » Wed Dec 05, 2018 10:10 pm

Hi, I did had an empty study too. Was normal. No help with herbs, I think it is worst. I have pain cdiff like and D frequent. I end up in Er last week.
You are right regarding Sibo not being understand very well.
Lidia.

MKW
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Re: Xifaxan

Postby MKW » Wed Dec 05, 2018 10:58 pm

Lidia, the first time I took herbal antimicrobials I was put on a lot. I had gone to a functional medicine specialist that was Not a doctor.
I did ok the first week, then she doubled my dosage of the one that had berberine in it.
I got so sick. My whole body hurt, horrible migraine, diarrhea, severe abdominal pain. So I stopped treatment.
That lasted a couple days.
But for the next three weeks or so, even though the D stopped I would get excruciating sharp abdominal pains. It truly scared me. Nothing has ever hurt my insides like that. C Diff cramping was nothing in comparison.
Later on I tried herbals again but only took one pill a day, that did not have berberine in it, for a month.
And I did this with an Integrative doctor, that was an MD.
Those herbals can be rough.
That product I took that did not hurt me is called Xymogen Candicidal. It did actually help and not hurt me for a while.
Did you say you tried digestive enzyme supplements? If so, did that help?
I wonder if I have low stomach acid sometimes.

georgina
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Re: Xifaxan

Postby georgina » Thu Dec 06, 2018 1:37 am

I have just finished another course of Xifaxin and it seems like it gave me relief again.I too had 1 D episode while on it but then it calmed down and it's seems like i have more tolerance to food then i did before starting the course. I too take digestive enzymes with my meals but i had to try lots of brands until i found one that agrees with me . I found that Digest (plain one) from Enzymedica to be most helpful.I do not know if i have SIBO because in my contry we do not have tests for that but it is a suspicion since i have SIBO symptoms and also i had a top-down FMT awhile ago but i definitely have bad IBS and Xifaxin is the only drug i found that to be helpful when nothing else helps.

Lid49
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Joined: Tue Sep 05, 2017 4:39 pm

Re: Xifaxan

Postby Lid49 » Thu Dec 06, 2018 7:16 am

I did take digestive enzyme, and in proces to do a pancreatic function test not only blood, elastase to see function.
For me xifaxan was very bad reaction like. After 3 days I had to stop.
Next mayo is doing a sigmoidoscopy to see if there is a form of colitis , microscopic or colagenos, etc.
I hope all of us will se improvement, Georgina can you take enteragam? Is available in Romania?
Lidia.

MKW
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Posts: 370
Joined: Mon Sep 26, 2016 9:49 am

Re: Xifaxan

Postby MKW » Thu Dec 06, 2018 7:35 pm

Georgina, my SIBO breath tests were actually at home kits that I mailed in myself.
As advanced as shipping is nowadays I’m almost surprised that this is not available internationally! But I think the food intolerances are the real indicator of SIBO.
Well, it’s good to know Xifaxan has worked for you more than once. And also that it hasn’t caused a c Diff recurrence. I haven’t tried reintroducing any new foods yet.
Lidia mentioned Enteragam. I have taken this too. The last two months before the Xifaxan I had gotten really bad, and that product helped me A LOT with abdominal pain and discomfort. I also felt better in general when taking it. I think those bacteria kick out toxic byproducts that get absorbed, and the Enteragam may bind to those toxins and help. At least that’s the theory.

georgina
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Re: Xifaxan

Postby georgina » Fri Dec 07, 2018 1:35 am

No enteragam here. We have next to nothing where i live, damn romanian medical system!

MKW
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Re: Xifaxan

Postby MKW » Tue Dec 11, 2018 4:25 pm

Hi Lidia.... well after great results from the Xifaxan while I took it and for exactly two weeks after, my symptoms are returning.
I began with bad cramping, gas Saturday and am home sick today with unexplainable D, and horrible abdominal pain. I does not seem like c Diff - at least so far.

I sent a message to my doctor on the patient portal.
I don’t know what to do anymore. I was so hopeful the xifaxan would start me on a path to healing for my body.
I worried I will just go right back to how I was or even worse now that I’ve messed with my microbiome again.
How could the effects be so helpful, yet so short lived.
Coping with the disappointment AGAIN is rough.
-Melanie

beth22
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Re: Xifaxan

Postby beth22 » Wed Dec 12, 2018 2:21 am

I went to see my SIBO specialist today and was told that there is a bad GI virus going around. I don't know if just here locally or if it all over the US, but maybe you have something like that.


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