Treatment Questions:

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Questions regarding treatment:

I was dx about three months ago with a mild/moderate infection. Treated with 14 day course of flagyl. Relapsed 3 weeks later. My doctor then prescribed a 10-day course of dificid. I am now a month post-dificid and have begun to be symptomatic again (though I've had symptoms off and on since stopping the dificid). If my upcoming test is in fact +, my doctor wants to treat with a one-month course of vanco, which I am reluctant to take.

1. My infection has remained stable so far, what has been described as mild/moderate. Some days are better than others, but I have been able to live a pretty normal life. I am currently taking questran as needed. If the infection is still present and I don't treat with vanco, could it get worse pretty quickly? She will not treat with an FMT until I have taken a tapered course of V.

2. Has anyone heard of Rebiotix? They are running a clinical trial (close to my home) for a fecal transplant via enema and I would be eligible for the study (pending the results of my upcoming PCR test).

With a mild/moderate infection so far, I am at a loss as to my next step. A month-long taper with V or a clinical trial. Of course safety and efficacy are my main concerns. Any feedback would be appreciated. Thanks.

[roy]

What were your symptoms before diagnosis and what are they now?
Questran binds c.diff toxins and stops them causing damage.
It also binds meds and stops them working so I hope you were not told to use it while on Dificid!

[Feedback]

Roy, thanks for your questions.

My symptoms before treatment were pretty "traditional." After a 10 day course of Omnicef (for an ear infection) I began having watery D. At the most, I had 4 episodes of that in a 24 hour period.

Since treatment, it has not been watery, but definitely D that usually hits me for an hour or so and then I am fine. Nothing, though, has been solid the entire time unless I take the Questran.

The questran was prescribed two weeks after ending the dificid after a symptomatic day.

At this point, I am a little worried that the dificid may have failed, so moving forward is a little less clear for me (as the dificid is usually prescribed after the vancomycin).

[roy]

If you read through others posts a lot say they have rough mornings during recovery, it seems to be "normal"
Are you another one that wakes up with gut upset but your fine the rest of the day?
Testings not accurate after meds, only symptoms say if your getting well.
I would not trust a negative while on questran, it masks c.diff but does not cure it.
If symptoms return (3x or more episodes a day of WATERY D) when you stop questran then its time to test and or treat.
And just so you know in future.
Dificid is designed to be taken BEFORE any other treatment.
A second round of dificid possibly with a taper might be a better option than vanco.

[Feedback]

Roy,

Gosh, if only I could get the dificid again. 1, my doctor is certain they won't cover a second round of it (and a 3rd for taper method). 2, she said she's never heard of a dificid taper and therefore won't prescribe it. In terms of antibiotics, a vancomycin taper is my only option. I'm nervous about the side effects, as I have a preexisting inner ear condition. I've read that it's very possible for vancomycin to exacerbate those issues.

My Dr is nervous about me not treating a positive test, even if my symptoms wax and wane, bc she said it could progress to something much more serious and/or increase the likelihood of colonization. And who knows the answer to that...no one, really.

Anyway, we'll see what the test brings. In an ideal world, I wouldn't have to worry about any of it. :)

How long after taking questran will it mask? If I stop on friday and test monday, is that long enough to render accurate results?

[roy]

Check the testing timescale with the lab.

Its not unusual to be colonised with c.diff, in fact its another form of normal.
If your colonised without typical symptoms its not advisable to try and eradicate it.
Treating asymptomatic colonisation can cause it to turn into a disease.
Only what I would do.
I would come off the questran and see if full on D returns 3x a day or more for over 3 days
If it did I would test.
If it did not I would not test.

[NanciT]

I agree with Roy, be careful not to over treat of you do not have D/3xday, if so then test first if possible. If it is positive, look under CDI and you will find info on the many tapers people have used on this board.

I started with Flagyl, got very ill on it. Went to Vanco 10 days, relapse then Vanco 3 months relapsed. Onto Dificd 10 days relapsed. My GI at the time did not do FMT's and the only one I could find I had to wait 4 months to get it.
I found my own DIficid taper online, it was a research poster and my GI finally agreed on the DIficid taper which finally cleared me.
Although CDIFF was gone, I had post IBS for months so you want to make sure that is not what you have right now. Be careful not to over treat.
There are many on this site that Dificid and Dificid/taper have worked for, hopefully they will jump in here.
NanciT

[Acres]

Hi,
I took a 10 day course of dificid after trying flagyl which I had to stop due to side effects, and then vancomycin which did not work. The dificid was successful but I developed pi-ibs, which has slowly improved over several months.
The last few days I have hit a couple of digestive bumps in the road - due to introducing foods back into my diet..... It's a long, frustrating, slow healing process.

While in the grasp of the ibs my GI told me even if I tested positive again he would not treat unless I had D.
Scott

[georgina]

Agree about taking longer courses of Dificid.For some people 10 days of Dificid could not do the trick , but 30 days gave them complete resolution of symptomes. It only kills clostridium so it leaves the other gut flora alone so they can continue to do their job. It stops the toxin formation so the toxins can't do more gut damage. It kills only clostridium, so it leaves the other intestinal bacteria in place to continue doing their jobs. It also stops the sporing process of the C.diff so the dificid can actually kill more C.diff bacteria. (nothing can "kill" spores, which is why the fact dificid stops the sporing process is so important).

[amyc]

Was your test positive? I'd go for the Rebiotix trial. Dr. Thomas Louie is on their research staff and he has had great success with his treatment.

[Feedback]

Amy C,

I decided not to test right away. I have felt okay for the last week; I don't think my current intermittent mild symptoms warrant treatment of any kind--antibiotics or FMT. Of course I remain hopeful that I will continue to feel better. I'm continuing to take florastor and raw brand probiotics. Fingers crossed.

[Feedback]

I did decide to test after another bad morning.

It was the PCR test, 31 days post dificid, and the test is negative. I posted my "so far" success story in the appropriate section.

[beth22]

If you have PI-IBS, that can go on for a long time, off and on symptoms sometimes. See if there are any trigger foods for you and then try to avoid them. I had to be very careful with vegetables and no fruit for a while.

[georgina]

Recovery is a long and bumpy road , even if the infection was cured symptoms may last for a long period of time. Eventually , time will be your best healer , give it time. I'm six months away from my FMT , and I am still having symptoms, hopefully you will recover faster.
Prayers for a speedy recovery!!

[hledgess]

Roy
I just read your comment about not trusting the negative test on questran.. I am getting so very confused by the different opinions from Drs and labs and on here.. Where is your information from just so I know how to process all of this?