How Bad Before Toxin Test While Recovering?

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Rusty S
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How Bad Before Toxin Test While Recovering?

Postby Rusty S » Wed Apr 29, 2020 10:21 pm

THE SHORT VERSION
If you're not having "D", how long do you "wait out" inflammatory colon symptoms before getting another toxin test for C Diff and rolling the dice on antibiotic treatment?

THE DETAILS
I joined this site 2.5 years ago when I was first diagnosed. I was treated with 10 days of Flagyl in November of 2017 and since then *on average* I've had more and more good days vs bad days. *That said* I emphasize "on average" because for the past 10 days I've been, eh em, "going" up to 3 times a day vs the normal once, and have had feelings of incomplete evacuation and soreness in my lower left side… where I was sore when I had C Diff originally (it's always the same spot when this happens, actually). Usually the waves come and go and only last a few days, so this has started making me anxious. I don't have "D" but the symptoms *are* consistent with colon inflammation as I understand it.

This particular change happened after I started working from home due to the pandemic going on. Maybe its the huge change in my diet as a result (and that I'm eating almost the same exact thing every day now)? The lack of sunlight depleting my Vitamin D levels causing my GI tract to not absorb enough calcium (I read non-absorbed calcium is conducive to C Diff germination), the fact that I'd recently went from Florastor twice a day to just once? These are the known changes and I'm not expecting anyone to be a medical export on a support forum, but, has anyone else had something like this happen? Could that be PI-IBS? This far after? I started taking a daily multivitamin (with food to assist in some semblance of absorption) to shrink any gaps in nutrition and went back up to two Florastor a day. I also take a Pepto capsule before bed now. Today was about 50% better, but I hope I'm not just masking the symptoms.

To my understanding, it's not abnormal for people to test positive for the bacteria itself after having CDI, so the only way to know if it's from C Diff toxins would be to test for Toxins A/B. My fear is being prescribed antibiotics because (and again, I hate saying "as I understand" a million times but I'm not a doctor) as far as I know, the destruction of the healthy gut flora by the antibiotics used to treat C Diff is a lot of the reason the relapse rate increases with each subsequent treatment. Also, even if the symptoms *are* caused by C Diff toxins, does that require antibiotic treatment, or is at-home care with diet, Florastor, and Pepto enough? I don't want to keep being uncomfortable physically (and frankly emotionally now, too) but I don't want to risk the downsides of being prescribed antibiotics, either, if I can avoid it. 2.5 years later and *still* not out of the woods. Is anyone else in this boat?

Thoughts? Thanks in advance.

beth22
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Re: How Bad Before Toxin Test While Recovering?

Postby beth22 » Thu Apr 30, 2020 1:13 am

I can tell you my experience. I had low grade c diff for a while and I was told not to treat and to only take Pepto Bismol. I had tested positive. After a while, I tested negative. Unless you are having D, antibiotic treatment is usually not advised. It may not even be c difficile. Last year my mother died and it happened when I took a trimester off from teaching. The combination of being at home and being stressed out and grieving started my GI symptoms back up too. It took a few months and when I returned to work, things went back to "normal". I put normal in quotes because things never went back to how they were before I got c difficile and I doubt they ever will completely.

Now, these last 6 weeks of being home and eating differently, I have some days of IBS symptoms as well. It comes and goes. I think stress, different diet, etc. play a role. It may be the same for you. I find when I take vitamin D, things do usually get better. Taking calcium is not recommended for me, as I had parathyroid problems and also have heart issues. Vitamins upset my stomach, so they may not be helping you either. The vitamin D that I take is a sublingual spray and I also have a sublingual B12 that I use occasionally. You could have your blood checked for vitamin and mineral deficiencies.

If your symptoms keep up, I would check with your GI though because you could have some other condition. Usually IBD gives D, but I would run it by the GI if symptoms get worse. Pepto helped me, and I was on it for a long time in small doses, but I only take it occasionally now.

roy
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Re: How Bad Before Toxin Test While Recovering?

Postby roy » Thu Apr 30, 2020 5:07 am

Put simply the guidlines to diagnose c.diff are.
If c.diff overgrows it caused D.
It's not a disease unless it causes D.
If you dont have D you dont test for c.diff.

Rusty S
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Re: How Bad Before Toxin Test While Recovering?

Postby Rusty S » Thu Apr 30, 2020 12:15 pm

@BETH22
Regarding the testing, you're saying you went from positive to negative without antibiotic treatment for mild symptoms? That's great if so, because to read some of this stuff on the internet, they act like if you test positive for toxins and don't get Vanco or Dificid right away, you'll end up with Toxic Megacolon and die. That didn't add up to me considering people who have antibiotic associated D from low grade C Diff can a lot of the time resolve it by simply discontinuing the antibiotic that's causing it. I'll infer they mean if it's getting *worse* tell your doctor because it *can* get that serious, though rare. To clarify, I don't take Calcium; I was saying Vitamin D allows your body to absorb Calcium, and that otherwise-non-absorbed Calcium makes C Diff worse. I dove into that when I read seemingly conflicting info on it saying Vitamin D correlates to a reduction in C Diff and Calcium to an increase in it. I was like "umm, Vitamin D facilitates Calcium's absorption, though" but I get it. Short version is Vitamin D does help prevent it, apparently. I'm actually curious if this is why every winter I have worse GI symptoms than in the summer; the lack of sunlight and Vitamin D synthesis. Like you, I've also noticed stress tends to… excite… my GI tract as well. I fare worse when shut in at home.

@ROY
I'm glad there's a standard set of general rules. I asked my Gastroenterologist how it was diagnosed if some people didn't have symptoms from colonization. He said it's a 3-prong educated guess based on symptoms consistent with C Diff + testing positive for toxins + response to antibiotic therapy. The "3x3" BM guidelines, as I understand it, are a threshold for treatment being warranted, but what you've said, combined with what beth22 said above, even if I tested positive for toxins, the symptoms aren't enough for the benefit of antibiotics to outweigh the risk considering I don't have D. I was just checking to see if anyone else had GI symptoms for this long this far after treatment. My BMs are fairly normal, I just wish these cramps would go away and the frequency would return to normal. They've been coming and going every day for almost 2 weeks now. I've felt a little better since rectifying the nutrition, taking Pepto at night, and going back to Florastor twice a day, but I hope I'm actually getting better instead of just treating the symptoms. I guess we shall see. Do you have any experience with how long people have PI-IBS symptoms, by chance? Last I read it was in the "years" range, so maybe this is normal and I'm pestering the forum for nothing?

beth22
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Re: How Bad Before Toxin Test While Recovering?

Postby beth22 » Fri May 01, 2020 2:07 am

Rusty - A few years ago, I was in the hospital with complications of the flu and I had not tested positive for c diff in about 4 years. I was given very strong IV antibiotics and about 6 weeks later, I had a few days of D and my doctor had me test because of the prior antibiotics. My test came back positive, but by the time I got the results, I no longer had D and was told not to treat. I tested positive for 2.5 years, not that I tested often, but when I did, it was positive PCR. I was told not to treat and I did not have D. I would have some day of IBS. Interestingly, last year when I was taking Pepto more often as I described above because of the stress of my mom's passing, etc. I tested again and to my surprise, the test was negative and has been since then. I don't know if it was the Pepto that cleared it or what, but I'm not complaining. However, the point is, I never treated with vanco, Difcid, or anything, although I did get a bottle of Dificid and kept it because I traveled out of the country and did not want to risk a relapse. I never used it.

Rusty S
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Re: How Bad Before Toxin Test While Recovering?

Postby Rusty S » Fri May 01, 2020 2:34 pm

BETH22
First of all, my sincere condolences on the loss of your mother; and second, my sincere apologies for not offering said condolences in my first reply to you above! Best wishes to your health and to the safety of your family during this pandemic as well. Third (finally CDI related), that sounds about like what I was imagining: You still tested positive via PCR, as I understand many people do after having C Diff. Doesn't PCR verify presence of the bacteria, but whether they're producing toxins? Regardless, that's great news that it was mild enough to where your OTC treatment got it under control! My fear was that "positive for toxins = antibiotic treatment always" as I've seen implied elsewhere online. Perhaps they're talking about people with much more invasive/obvious symptoms? For now, I'm inferring the benefit wouldn't be worth the risk as I'm not exceeding the "3x3 rule". Sure would be nice to not have this cramping/inflammation feeling, though. I prodded around the forums some more and have seen other people have bouts of PI-IBS or similar for years after treatment, too, so I guess life just has to suck while I wait it out. I wouldn't wish C Diff on my worst enemy. This has been 2.5 years of on/off life-altering hassle. :\

beth22
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Re: How Bad Before Toxin Test While Recovering?

Postby beth22 » Sat May 02, 2020 1:53 am

Now my hospital lab tests all positive PCR tests with an EIA to follow up to see if it is actually an active infection. When I first tested positive after that hospital stay, they weren't doing that, but about 6 months later, they started and they would list the results as "negative" despite having the positive PCR because the EIA was negative.

Rusty S
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Joined: Thu Mar 08, 2018 3:23 pm

Re: How Bad Before Toxin Test While Recovering?

Postby Rusty S » Sat May 09, 2020 10:11 pm

BETH22
Wow, you really got to the answer I was looking for! Thanks so much for sharing your knowledge and experience. On a related note, I've done a little prodding into the correlation between being stuck indoors for prolonged periods of time and the effects on gut flora. I'm not seeing a consensus yet on what it supposedly is. Nothing authoritative but there's 1) the idea that it's a Vitamin D issue from lack of sun exposure like we discussed above, and 2) exposure to bacteria outside in the environment perhaps supports biodiversity in the gastrointestinal tract? I'm not clearly sure on that one other than maybe the dietary changes that go along with being stuck at home; unless somehow physical and/or airborne contact play a role. That's "above my pay grade" to comment on in any real way, but I've had the same problem you described when you were at home for several months, too.


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