Negative Test Result for C Diff? Is it true?

[CathyJ]

I got a negative test result during my third Vanco taper, last week. Should I believe it?

I've had C Diff come back twice. I'm afraid to get off of my Vanco in fear of a third relapse.

I was on Flagyl for 10 days, got C Diff back after 3 days off; went on Vanco for 4 months (during my pregnancy), got C Diff back after 3 days off; and now I've been on Vanco again for 8 weeks, afraid to get off for 3 days.

I've been tapering down for 3 weeks now. I'm down to one Vanco a day, and feeling 100%. That's why my GI thinks I don't have it anymore. He thinks I feel too great. But I always feel 100% when I'm on antibiotics.

I've never taken a test while I was on antibiotics. Should I believe it?

I was hoping it would be positive to get more Vanco to do the pulsing schedule.

Help!

Cathy

[Nancy1]

Cathy,
I won't give you the official welcome to the site, since I hope you have beaten cdiff. Good luck!

We always say that it is best to be off of vanco (or Flagyl) for a period of time before testing for cdiff, since otherwise you could get a false negative test result. We used to say you should be off 10 - 14 days, but I read something not long ago saying that you don't need to be off so long to get a valid result. The only time I tested positive in my 8 months of cdiff was after I was off of vanco for only 6 days. I always relapsed in 3-5 days.

So I don't know whether you should believe your negative result or not. I lean toward not believing it, since you are still taking one vanco a day. Why did your doc want you to test while you are still taking vanco?

[beth22]

My ID doctor had me tested while still on vanco too. He and the GI both say that the test is for the toxin and the vanco does not kill the toxin only the bacteria, so they check to see if the medication is working. My relapses were always from 2-4 weeks after stopping vanco and I always tested negative in between, so I don't think a negative test necessarily means you are cured. This last time I took Xifaxan as a chaser for a week after the vanco and it made me feel better than just tapering the vanco. You might ask your doctor about that. Hopefully it worked for me - it's been about 38 days only, so it is too early to tell yet.

[CathyJ]

Thanks for the input! I love you all!

Do you all think, then, that I shouldn't do the pulsing schedule that Lauren recommends? I'm all geared up to do it, b/c I just can't believe that test result. I'm too much of a sceptic now, living with C Diff for 6 months.

Nancy, I'm not sure why my GI wanted to test me while on the Vanco. He just said I looked great during our last visit, so he didn't believe I had it. I guess I shouldn't have straightened my hair and done up my makeup for the visit. I looked too healthy. My mistake.

The last two relapses, I tested positive within the first day of getting my symptoms. I've never had a negative test result.

I wish I could stay on Vanco 4ever, and never have to worry about a relapse.

[CathyJ]

Roy, i'm real scared of hitting my third day off of Vanco. I read the Three-Day Rule in FAQ, as you suggested, and I'll keep that in mind for questionable bad days ... so far, on my third day off Vanco, in the past 6 months, I get a fever of 103 immediately and all of the symptoms of C Diff come shortly after. I get tested right away, and it comes back positive (twice this has happened). Then I lose about 3 days of my life trying to recover. Since I just had a baby, the weight loss this last time was welcomed. But I can't afford to lose 3 days right now. (I actually could afford it over the summer, during maternity leave.)

But, the way I understand it, the spores could be in me right now waiting to hatch once I'm off Vanco a few days. If I do the pulsing, i can kill them as they hatch every few days, right?

... I guess I'm a fool to do pulsing if I don't have C Diff anymore. But I don't want that fever and suffering if I do have it.

Is there a fool proof test for C Diff? A colonoscopy? Something that will tell me 100% if I have it or not?

[CathyJ]

Roy, now I'm really confused about beating c diff.

When I get my relapses, there's no way I can "tough it out." I vomit, go to the bathroom dozens of times a day, and get a high fever. I get dehydrated, and pass out in the bathroom every time. Plus, I can't work or take care of my newborn... It's not good. No toughing it out there. ...
And I've had kidney stones while pregnant, so I can tough out a lot.

I think I'm gonna go ahead and do pulsing, just to make sure I beat this thing. I have nothing to lose if I don't trust my negative result. But I have a lot to lose if I trust the test, and go off the meds.

I sure wish this was all more of a science, instead of an art.

[Mia-Mia]

ROY ROY I totally agree with you And you are saying exactly what my infectious disease guy said. I once got my positive results about 4 days after i tested by then the symptoms had stopped. Even though the test was positive I did not have D any longer and both Docs said No meds. Of course there are people that have fevers and in controlable D that for sure need meds. But we need to stop freaking out if we have a day or 2 with D. (I am still guilty of this) I still have some bad days but i have tested negative since. i will be fine for 1 month sick for 2 days better for 2 months and so on sometimes it happens every few weeks.

[fire7163]

Cathy:

The reality of the situation is that you are not going to get well overnight...not going to happen. You will get better over time, a little bit each day. There are going to be some bumps in the road and some rough days. That's just the way it is. You've had a very serious and complicated infection in one of your bodies largest and most complex systems, and it's going to take time for it to heal and recover. Just hang in there and you will get well.

Fire

[CathyJ]

I understand what everyone is saying, about the bumps on the way to recovery. But what I'm saying is that I don't get bumps, I get earthquakes. I can't funtion with a high fever, vomitting and non-stop D (with blood and mucus)... I'm underweight to begin with, so not eating for a week really causes me to lose a good percentage of my body weight.

I can tough out anything -- kidney stones, surgeries with no anesthesia, etc. -- but I can't tough it out if there's no light at the end of the tunnel. ... The last two times, after a few days, of laying in bed, I go back on the meds.

I went three days with no meds this week, and started pulsing yesterday. I already had the D yesterday and pain in my intestines, but nothing else.

I don't think my negative test result was correct.

[Suezer]

I can relate to your situation Cathy, I have been pulsing since April (started Vanco in February tapered til April then began the pulse therapy)

At this point I tried to go off Vanco completely about 3 weeks ago and by day four all the signs/symptoms came back,so I did a 3 day full dosing,then went back to every 3rd day. I actually feel better than I ever have at this point, I believe my colon is nearly mended after the 1st three episodes/ relapses I suffered between January and February. Like you I have no symptoms..not a single grumble or pain until I get around 94 hours off meds.

I will try again to go off of it in the next weeks, however I cannot afford to give it the three day rule either, because like you I go from mild symptoms to full on colitis within 2-3 hours when I relapse,add to it the fact that my Vanco costs 35.00 a pill as my insurance wont cover it anymore.

I am now using VSL#3 (1/2 packet a day), acidophillus pearls(1 a day) and taking Florastor twice daily as well as eating yogurt twice a day.. I am hoping this will give me better luck next time I try to stop the Vanco.

Feel free to pm me if you ever want to talk more at depth or if you have any questions.