Relapsed again with negative test.

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RomGrl
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Relapsed again with negative test.

Postby RomGrl » Tue Feb 21, 2017 4:35 pm

This has been one of the most tiring and emotionally draining challenges I've ever been through. I went 9 days with good stools and even provided one the morning before I relapsed (which tested negative for c diff toxins) but later the next day watery D took hold, chills, stomach pain. I waited two days went back to the doctor and got a taper.

Idk how it tested negative and then came back so quickly. Right after I resumed the Vanco everything is solid again, no bubbling and rumbling. Sigh.

Next step (I hope) with a negative "cure," test is an FMT. Since all symptoms point to relapse and it was intense again... I seriously do feel like this will never end. I was given some anxiety medicine but I don't want to take it daily due to my past withdrawals with it. I feel like this really is a slow death for me (even though I'm probably over reacting) I never thought CDiff could break me worse than I ever have been before. Sometimes I just feel like giving up....

It's always the same routine, go to sleep, wake up and my day depends on how that morning went in the rest room... I've cried more days than I can count and I don't even want to get up and do anything anymore.

Do we all eventually get cured or is this some cruel joke??

roy
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Re: Relapsed again with negative test.

Postby roy » Tue Feb 21, 2017 5:26 pm

Vanco does not neutralise the toxin.
Vanco kills c.diff and then the toxin leaves your body.
Vanco takes a few days to do this.
If you improved immediately after the first dose it was probably not the vanco!

RomGrl
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Re: Relapsed again with negative test.

Postby RomGrl » Tue Feb 21, 2017 5:31 pm

roy:

My stool improvement started on about day 2 or the sixth dose or so. But I'm sorry I don't quite understand ? Does that mean we could be over treating?

MKW
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Re: Relapsed again with negative test.

Postby MKW » Tue Feb 21, 2017 8:23 pm

Hi, I plan all of my days after how it goes in the morning too. For everything I plan with my kids on the weekend, I have to tell them - but it will depend on how I feel in the morning.
I am curious, based on your phrasing... so when you went back to the doctor after 2 days with symptoms did you do a test again and test positive? or did the doc just start you on meds based on symptoms?
Mine has started me on meds without test results back twice, due to severe symptoms, and told me to just stop taking it if test came back negative. But it was positive both times. My symptoms aren't questionable to me though. I get bad fast.
But like you I also respond to Vanco quickly, after 4 to 6 doses the last 2 times I am symptom free.
Also, the last two times it has recurred I go from a perfect state of health to abdominal cramping to bad symptoms in about 24 hours. This terrifies me more than anything. I don't know what would happen to me if I didn't start on meds quickly, and don't want to ever find out.
I have an upcoming FMT procedure next week. I'm scared and excited.
For whatever reason, my body just can't repopulate the healthy bacteria needed even though I've done everything right (kefir, probiotics). I have thought a lot about my nutrition and how it might be effecting my immune system, which may play a role in keeping C Diff in check.
And C Diff does feel like a cruel joke. You never know what's going to happen, or if any treatment you are doing will work in the end. It absolutely causes hopelessness. I just keep telling myself something will work eventually, and I try to make the most of each day I feel good. - Melanie

RomGrl
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Re: Relapsed again with negative test.

Postby RomGrl » Tue Feb 21, 2017 8:47 pm

MKW:

What occurred was the doctor wanted to test for cure (for whatever reason) and I took in a good sample (solid, formed, no mucus) and then later that night everything changed and I started having mucus and loose BMS and watery D, pain and nausea. I went back in and the doctor gave me Vanco even though the test came back negative.

So, now I'm on a tapered pulse and I guess we see what happens from there? I hope an FMT if it doesn't work this time. I mean, it's gotta get cured somehow right?

Yeah, it feels like a horrible cruel joke. 7 months of my life feels wasted. And i just wasted another day on google and crying....

beth22
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Re: Relapsed again with negative test.

Postby beth22 » Tue Feb 21, 2017 9:20 pm

What kind of test came back negative? If it was PCR, then it probably was truly negative. Now that you started vanco, you should finish it. But, many have had what you describe and it turned out not to be c difficile.

RomGrl
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Re: Relapsed again with negative test.

Postby RomGrl » Tue Feb 21, 2017 9:59 pm

beth22:

It was a toxin a and b test. My husband says that's not the PCR one but if we are wrong I would like to know. I guess they were just testing to see if the infection was gone or something but the symptoms hit hard.

They presented just like when I was diagnosed. And okay, I will def finish, but what are your thoughts? Does that mean it could have relapsed just like it "happened?"

georgina
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Re: Relapsed again with negative test.

Postby georgina » Wed Feb 22, 2017 1:30 am

Your symptoms indicated a relapse but the test can come back false negative if it was done too soon. I always tested positive trough EIA but I had to do the test three days in a row because sometimes it would come back false negative.
Like you , I always saw improvement from vanco by the end of the second day.

Bobbie
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Re: Relapsed again with negative test.

Postby Bobbie » Wed Feb 22, 2017 2:30 am

See latest info posted in Gen, Discussion about testing.

beth22
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Re: Relapsed again with negative test.

Postby beth22 » Wed Feb 22, 2017 3:05 am

Since you had c diff before, it is likely that this was a relapse. If it was a PCR test that was negative, that is very sensitive and it would have picked it up, but as Georgina said the other tests are not as accurate, although more so now than a few years ago. I remember when I first had c difficile, I would test negative too, but after a few weeks of being off vanco, I would get symptoms and the test was positive. Those were the old tests. I would not wonder about it. The main thing is that you feel better.

RomGrl
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Re: Relapsed again with negative test.

Postby RomGrl » Wed Feb 22, 2017 12:10 pm

beth22:

Yeah, I am starting to feel better still have M but that's normal for me right now. I hope the doctor will still be willing to do an FMT based off symptoms rather than that one negative test. But I suppose if it comes back I'll wait a little longer and make sure to throw in the mucus too because I really just want to be healed...

I get to see him on the 3rd and I'll be on day 11 of the taper by that point. Do they do FMTs based on relapse symptoms or negative tests because if they go off tests I feel a little screwed. ?

Bobbie: thank you!

Georgina: yep, literally by day 2 everything is all formed up again...


Does anyone have thoughts regarding my thought? I feel like I will never be cured... Am I over reacting? Do we all EVENTUALLY get cured even if it's a fight?

beth22
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Re: Relapsed again with negative test.

Postby beth22 » Wed Feb 22, 2017 9:21 pm

You usually need a positive test for anyone to do FMT. That is why I always waited to get one before I treated. Check with your doctor to see what their protocol is. Maybe the one who prescribed you the meds will be willing to do one based off symptoms alone.

RomGrl
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Re: Relapsed again with negative test.

Postby RomGrl » Wed Feb 22, 2017 11:56 pm

beth22:

I truly wish that was the case but she isn't a GI and she is actually going to be coming in to watch as she has never seen an FMT. It sounds like to me that he wants to do FMT. This is what he wrote on my chart, Idk what everyone else makes of it. But I've been given Vanco again since this note was put into my chart, so I'm assuming that he meant he won't treat with antibiotics again AFTER the FMT.

My husband and mom said I'm wayyyy over analyzing the note and that he wouldn't just leave me with symptoms if I've 'relapsed.' It sounds (and he said multiple times in office) that he would do an FMT and he said I would even do 2 if you need it.

"Assessment Note

She may well have eradicated the C. difficile bacteria and toxin based on her clinical symptoms although she has just finished her course of 10 days vancomycin a few days ago. If she does not do well over this week and there may be a resurgence of her symptomatology, I would consider 1 more course before an FMT as typically we do not perform this until 3 failures of antibiotic therapy. She is well assured and reassured about the situation and feels quite a bit better about it. Reviewing the EGD that she had previously, she does have disaccharidase deficiency is for lactose, sucrose and maltose which could be playing a role although celiac was definitely ruled out by biopsy. She has had a history of vitamin D deficiency. I would certainly not treat her again for C. difficile by antibiotics unless I had a positive toxin result as we may be dealing with other gastrointestinal issues.

1. Clostridium difficile colitis
• C diff toxin A+B, qual IA, stool"

Thoughts? Does this sound like he won't provide antibiotics AFTER the FMT or at all until I test positive again. I feel like he somewhat contradicted what he said earlier in the paragraph. I'm wondering if he meant after being treated with FMT. He seemed very set on doing the FMT if this fails (you can even see that at the beg of his note).

beth22
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Re: Relapsed again with negative test.

Postby beth22 » Thu Feb 23, 2017 2:50 am

You are not supposed to take antibiotics after FMT. You are supposed to avoid them for as long as you can. Not sure what the note means. It sounds as if you have some lactose, fructose intolerances. I got those thanks to c difficile too. I would not worry. Talk to your doctor and see if they can do the FMT if that is what you want to do. Before FMT you have to be on vancomycin anyway, so maybe they can do it when you finish this course.

RomGrl
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Re: Relapsed again with negative test.

Postby RomGrl » Thu Feb 23, 2017 11:03 am

beth:
Do the enzymes ever come back up? Also, I know. I never want to touch antibiotics again. I just hope he'll do the FMT. It does sound like that's what he is leaning too.


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