Dificid - Feeling worse

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okaylo
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Dificid - Feeling worse

Postby okaylo » Sun Jul 24, 2016 6:39 pm

Currently on Dificid for 5th cdiff infection. I have been dealing with this since 2014 and have been on Flagyl, Vanco, and Dificid before. 1st FMT in June 2016 failed. Going to be having a 2nd FMT in late August. Has anyone felt worse after taking Dificid? The first time I took it I did not experience so many side effects but this time around I actually feel even more sick (I've been on it 6 days so far). Loose stools/diarrhea each morning and flu like symptoms throughout the day. I feel like my body is being poisoned from the inside out. I felt bad before the antibiotics but this is on a whole new level. I know studies have shown that Dificid is the most effective form of treatment as it targets the specific Cdiff bacteria and leaves the rest of the gut alone (as it's poorly absorbed). I also know that Dificid can be a harsh medication for some and it is very strong. Anyone else have relatively the same experiences and felt worse before better? I'm just trying to suppress the infection and prevent things from getting worse before I can have the 2nd FMT done. I'm only 25 years old and pray I can get over this and on with my life.

roy
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Re: Dificid - Feeling worse

Postby roy » Sun Jul 24, 2016 7:49 pm

Possibly your experiencing side effects from the meds.
Looking at past posts your trying to treat asymptomatic c.diff.
C.diff as a disease does not respect the time of day and limit itself to the morning.
That's more like typical IBS but I am not a Dr.
I can't see why your planning a second FMT late August!
You would need to go on another course of meds and stop them 2 days before the FMT.
That would not give anything near enough time to see if the dificid worked!
After this course of dificid don't panic if you have morning only problems or the odd rough day
It's part of normal recovery and can only begin after all treatment is stopped.

okaylo
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Re: Dificid - Feeling worse

Postby okaylo » Mon Jul 25, 2016 1:14 am

Roy,

After further research, I get what you are saying. I am still very confused in all of this. So, I had the FMT in June. A month later, I tested POSITIVE for GDH Antigen, NEGATIVE for Toxin A&B. Then the PCR test says: Positive for toxigenic difficile. This result is suggestive of a Cdifficile infection if accompanied by appropriate clinical symptoms. I don't have diarrhea multiple times per day but I do feel like junk (maybe this is the ups and downs post FMT).

I don't understand if this means I have a toxigenic strain but not the symptoms or what is going on. My fear is that down the road the Cdiff will begin to produce toxins and I won't know if it's back or not. I've been on the Dificid for roughly 5 days. It is making me feel even worse. I guess I am most confused as to what the criteria is for a successful FMT. Is it solely the resolve of persistent diarrhea and no toxins? What qualifies as an infection? My doctor wants me to get a 2nd opinion from an infectious disease specialist. I cannot handle one more day of these antibiotics and am stopping them tonight. Thank you for continuing to share your insight.

beth22
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Re: Dificid - Feeling worse

Postby beth22 » Mon Jul 25, 2016 1:45 am

I am testing positive for c difficile too, but with no D. I am not treating at the moment, but will probably do FMT enemas next weekend. When I have tested positive before, I did FMT enemas and my test still showed positive a few weeks later, even though symptoms resolved pretty much. It was a PCR test too. I was told that the DNA hangs around for a while, even if the c diff is not an active infection. It must have been, because I tested again about 6 weeks later, and it was negative. Since you took the Dificid, if you get symptoms again, I would do the second FMT at this point. I find that when I treated for c difficile, I would just relapse due to the vancomycin killing too much good flora. I now Dificid is different, but it wouldn't hurt to put in some good bacteria if your doctor feels it is a good idea. That's just my opinion. I am not a medical professional, but if it were me, I would want to give myself every chance. However, unless you get symptoms, I would not test.

amyc
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Re: Dificid - Feeling worse

Postby amyc » Mon Jul 25, 2016 1:57 am

Please do call your doctor tomorrow for advice. Maybe he can do your second FMT sooner or get you in with the infectious disease doctor for an urgent appointment right away to help decipher your tests. It is a little unusual to take the Dificid a month and a half before the scheduled FMT? Or was he hoping the Dificid would clear the infection so you wouldn't need another FMT? Good luck to you, and I hope they get you back to the full health you should be enjoying at your age.

georgina
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Re: Dificid - Feeling worse

Postby georgina » Mon Jul 25, 2016 3:59 am

You have to make sure that you will be on meds for Cdiff until 48h before the FMT , otherwise there is a chance that the FMT will fail.I had my FMT in november trough naso-gastric tube and it wasn't successful because my doctor didn't wanna prep me with vanco prior to the procedure.

roy
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Re: Dificid - Feeling worse

Postby roy » Mon Jul 25, 2016 5:08 am

"Positive for toxigenic difficile. This result is suggestive of a Cdifficile infection if accompanied by appropriate clinical symptoms"
The symptoms they are talking about are copious watery D 3 or more times a day.
Anything other than that and an experienced Dr might advise not to treat.
Having c.diff in your gut is not a disease unless it causes D.
It's totally possible to have toxins without it causing a disease.
Natural immunity to c.diff toxins can be developed.
When a vaccine is brought out it will not stop someone catching c.diff or stop c.diff from producing toxins.
It will stop the body reacting to the toxin and stop it becoming a disease.

NanciT
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Re: Dificid - Feeling worse

Postby NanciT » Mon Jul 25, 2016 9:34 am

When I took the initial 10 days of DIficid (after Flagyl and Vanco ) I had no symptoms at all. Took and felt fine. Then I had a relapse 14 days later. I was not able to get in with the only GI in my area that did the FMT's for 4 months so I was put on a Dificid pulse taper for months.
During that time I felt terrible, so ill with abdominal pain and ended up in the ER twice. Went through a ton of tests but in my case it was caused from the Dificid.
Dificid DID get rid of CDIFF for me...thankfully but it was a long road of Post IBS recvoery after taking it for so long.
Check with your GI especially if symptoms continue. I became dehydrated several times throughout this time.
Hope you feel better soon!
NanciT


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