To treat or not to treat...

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cps
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Joined: Wed Nov 14, 2018 11:19 am

To treat or not to treat...

Postby cps » Wed Nov 14, 2018 6:28 pm

First, I'd like to thank all of you who post in this group. I've been dealing with c diff for over 5 months and this is the only thing that keeps me sane sometimes. Only people who have gone through or are going through it can understand! Most people have never even heard of c diff and it's not really something you want to talk about to a lot of people. I have come here many times to calm the anxiety, but have never posted before.

I was officially diagnosed in early July and have done a few rounds of vanco (10 day, 14 day, pulse, taper). The taper ended about 3 and a half weeks ago and I really thought I had kicked this. BMs were improving and all symptoms seemed like normal recovery. Most days were pretty good and I never really had any D. I've been taking VSL3 and Florastor, drinking kefir and kombucha, and eating pickles (as well as eating a very bland and boring diet!). Then late last week I had two days of only M and B and that's what happened last time I relapsed. I was heading out of town so did a test on Saturday and found out that it is positive for toxins on Monday. I actually felt great on Sunday and Monday and talked to my dr about holding off on treatment (our plan is dificid which i really wish had been my first line of treatment). I felt great yesterday too (almost like a normal person) and then today I feel terrible again. I feel very lightheaded and tired and hot. I just wanted to curl up in bed and sleep. I had a few BMs this morning, but none were watery D. Has anyone else experienced this lightheadedness? I haven't seen many post about that and I've had that for weeks.

I am not looking for medical advice, but wondering if anyone has elected not to treat with meds after a positive toxin test and had success with it. Unless I end up with urgent, frequent bouts of watery D, I was planning to let my body keep working on it. Thanks in advance for your thoughts.

Ajs
Regular Contributor
Posts: 139
Joined: Sat Jun 30, 2018 12:29 pm

Re: To treat or not to treat...

Postby Ajs » Wed Nov 14, 2018 11:41 pm

Keep a watch on the light headedness. As well as other symptoms like major fatigue, urgency, stomach cramps, etc. If your not experiencing any of the other symptoms and also not having frequent watery D, Id probably not treat. But I’d definitely stay in contact with my doctor and follow their suggestions. I’ve read on here many times to treat the symptoms and not test results.

beth22
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Joined: Tue Apr 07, 2009 2:23 pm

Re: To treat or not to treat...

Postby beth22 » Thu Nov 15, 2018 2:16 am

I was not lightheaded with c difficile, but I was with two other GI problems. One was an infection called campylobacter, but that resolved on its own and the other was a GI virus. I have tested positive before and not treated. Like you, I had WD and brought in a sample, but by the time it came back, I did not have D anymore. I was also going out of town and my doctors told me to take Pepto Bismol with each main meal, which I did for a few weeks. When I tested later again, I tested negative. I would see how you feel. Keep the DIficid handy. That would be my choice as well. Perhaps you can beat this without treating. Ask your doctor about the Pepto. Maybe it would help. If you have a full blown relapse, it won't stop it. I speak from my own experience. But, if it is just low grade, perhaps it can.

AllisS
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Joined: Fri Sep 07, 2012 10:52 pm

Re: To treat or not to treat...

Postby AllisS » Thu Nov 15, 2018 2:25 am

Hi, cps. Welcome to the site. When you have a chance, please take a look at our guidelines for all new posters, first forum on the intro page.

You are correct that treatment should not be based on a positive test -- only on symptoms. Since your symptoms aren't those of C. diff, treatment not only wouldn't help -- it could make matters worse. If you continue to feel unwell, you should see your PCP to try and pinpoint the problem.

You are taking a lot of probiotics and eating several fermented foods. Probiotics themselves can cause GI symptoms. There is as of yet no solid evidence that probiotics prevent C. diff, though it's theorized that they may be helpful. You may want to try cutting back on the probiotics -- perhaps just taking one of the two that you mention. I don't know how much kefir you're drinking, but you may want to cut back on that as well, along with the kombucha and pickles. As with probiotics, the benefits of these foods are, at this point in time, speculative, and an excess they can cause GI upset.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm


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