questions

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Juicebox
New User
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Joined: Sun Mar 18, 2018 6:11 pm

questions

Postby Juicebox » Fri Jun 15, 2018 7:57 pm

Hello everyone, I am grateful for this site. I understand I can't get medical advice but just have some questions to get some opinions. I got c diff a couple of months ago after antibiotic usage and treated with flagyl which didn't work. After another positive test I received a 10 day course of dificid. I responded well to it and had been okay for awhile, still iffy but things were status quo. Last week, my stomach was off again and I got retested. It's been about 7-8 weeks post dificid. My results were positive from a detected gdh antigen, negative toxins, but then with inconclusive results a pcr was done which was positive. I don't 100 percent know how to interpret these results although I've searched on this site and have tried to make sense of everything.

I'm frustrated of course, and I haven't had the classic symptom of watery D, but I tested positive without it on my second time as well. I've had looser bm/minor cramps, a little m, and an odor, so I'm guessing just from reading that despite not having watery D, one can still have this infection. One of the symptoms I've had is burning in my stomach/intestines and some occasionally side pain almost like a dull stabbing that goes away, which seems more like gastritis or something else or just inflammation but I'm wondering if anyone had that with c diff. Also, I'm also wondering about treatment moving forward. I haven't gotten to talk to my dr yet (we communicated online), but will be speaking to her directly soon. She floated the idea of a taper method and suggested possibly using vancomycin, but I'm hesistant to take that since I got an allergic reaction to it on an IV form. I responded well in terms of side effects to dificid and am wondering if its common (maybe common isn't the right word) to fail or relapse after the 10 day treatment but then respond well to the taper method, or if it would be worth it to try vancomycin. I'd obviously prefer to use something I previously tolerated well but am also anxious that if the infection is still here, then I didn't fully respond to the medicine. She also floated the idea of seeing an ID dr. Has anyone had more success with working with this type of dr as opposed to a gastroenterologist? Maybe they would be more knowledgable, but of course that's dependent on the person. It's just a frustrating, confusing, debilitating infection so I'm just having alot of anxiety and am unsure of how to move forward with this because I don't want to overtreat but I also don't want to let it linger and get worse of course if this is a true active infection. Thanks.

fishrman
Regular User
Posts: 38
Joined: Sun Jun 03, 2018 9:19 pm

Re: questions

Postby fishrman » Tue Jun 19, 2018 7:47 pm

Far be it from me to tell you what you should do here but if I were having problems, I would want answers too. I would certainly give the gastro Dr. a chance to properly diagnose and treat and if I didn't feel I was getting anywhere, I would get to a different Doc. I don't understand the testing you had done so hoping someone can help you here on thoughts. It is my understanding that many will test positive but not necessarily have the infection. I am learning too but wanted to let you know I am thinking of you and hoping you get the answers to help you.

beth22
Long Time Contributor
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Joined: Tue Apr 07, 2009 2:23 pm

Re: questions

Postby beth22 » Wed Jun 20, 2018 2:01 am

Hi Juicebox and welcome to the site. I didn't see your post until today. Please read the first forum for more information for new posters.

I test positive on PCR and GDH, but negative with toxins and my doctors advise against treating. It is possible that you still have c diff low grade, but many doctors feel that it is better for your own body to try to rid yourself of it. When you speak to your GI ask about a product called EnteraGam. It is for PI-IBS, but it has some activity against c diff in that it is supposed to carry out the toxins and it builds your gut immunity. It is a prescription and expensive, but the company that makes it has their own foundation pharmacy and you can get a box for about $60-$70. I have tried it myself. If you are having loose bms, there is also cholestryramine, another Rx, and it firms up stools, but it can cause constipation. So unless you are having D, it probably is not the thing to use. I would discuss these options with your doctor.

If I ever relapse, I will take Dificid. Vanco just kept me relapsing over and over again and I think it did more damage to my GI tract than the c difficile. Dificid kills the least bacteria and destroys far less good flora. If you reacted well to it, I would take that. I have some in my cupboard that I have not needed to take. I was like you and went on vacation with those test results and the doctor gave me an Rx in case I got sick while away from home. I didn't. Hopefully, you won't need it either.

Lisa33
Long Time Contributor
Posts: 2430
Joined: Mon Sep 29, 2014 1:45 pm

Re: questions

Postby Lisa33 » Wed Jun 20, 2018 9:12 am

I also tested GDH antigen positive, but negative for toxins. This test was done about 2 1/2 years out from having c-diff, as I was having a bout of terrible GI issues. However, the symptoms were not the same as when I had c-diff. He did it as a part of a more comprehensive testing. My GI said that those results mean that you do not have an active infection and does not need treatment.

Just to add, I think ID doctors can be helpful with stubborn cases, or if you have other underlying illnesses, especially chronic illnesses such as Lyme. I would take either doctor as long as they are very well versed and up to date with c-diff. I used an ID doctor as a second opinion after I relapsed with c-diff back in 2014.

Juicebox
New User
Posts: 8
Joined: Sun Mar 18, 2018 6:11 pm

Re: questions

Postby Juicebox » Thu Jun 21, 2018 11:47 am

Thank you all for your kind/helpful responses! It's just been a very stressful process. I spoke to my GI dr briefly and probably didn't ask all the right questions, especially about interpreting the test results, because I was under stress/anxious. I agree with you guys that maybe I should see an ID just for a second opinion/to see someone more well versed in this particular disease, in addition to my GI. My GI is very nice though (it makes me so angry when drs are rude and dismissive) and said she would consult with the ID in her hospital for treatment suggestions. She opted against referring me only because she felt it would be hard for me to get an appointment in a timely manner, but I'm still thinking I should do that.

I'm not sure how much background the ID received about me, but she felt I should do a dificid taper, 5 days 2x daily, and then 1 pill every other day. Has anyone tried this approach? I saw it was in a study, and I feel hopeful if I do have to take it.

Thanks for the suggestion about EnteraGram as well-I will ask the dr and see what she says. This is just such an annoying process, and the mixed results are really throwing me off. I know I need to better manage my stress level to help beat this thing fully, and my eating as well. After a month of feeling a bit better, I started to indulge more, but it's really hard when you have an appetite, and want to eat like everyone else, like birthday cake on someones birthday, or snacks/junk when on vacation or with friends. It's just hard watching people be able to eat and drink whatever without consequence. I read about a food strategy on a website, I'm not sure if I'm allowed to post a link or if it's been posted already, but either way I was sort of like this is helpful information, but also sucks, for a lack of a better word, due to how minimal/boring it is lol.

Thanks again for the support!

Kuro
Contributor
Posts: 93
Joined: Thu Mar 29, 2018 5:12 pm

Re: questions

Postby Kuro » Thu Jun 21, 2018 5:49 pm

I can't speak to your treatment, but you're not alone when it comes to the eating frustration! I'm in early recovery and dealing with food intolerances. Luckily, my diet was already bland, but still having to add even that sort of thing back one at a time to feel safe. It was rough when I walked out of my room and found my parents eating cheesecake! :O

Going to have the birthday cake challenge this weekend, as it's my brother's birthday. The last time I had cake, it was before CDIFF, so not sure if I will risk it or not. You can eat anything, it doesn't cause relapse, but I'm not so sure the five seconds of cake would be worth the consequences!

Everyone I talk to tells me the food intolerances eventually get better, faster for some than others, so fingers crossed on that front for us both. I hope everything goes well with your doc and treatment.

Juicebox
New User
Posts: 8
Joined: Sun Mar 18, 2018 6:11 pm

Re: questions

Postby Juicebox » Thu Jun 21, 2018 10:49 pm

I’m glad you can relate! Ugh cheesecake. Today my boyfriend complained about being full from too much popcorn after a movie. I’m like must be nice ._. I wish you good luck in your recovery too! I agree that your cake dilemma is tough. I gave in, which in itself isn’t a huge deal but on a Larger scale, I probably should have stayed bland or focused on healthy bacteria a bit longer. I need more will power for sure.

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: questions

Postby beth22 » Fri Jun 22, 2018 2:08 am

There have been people who did a Dificid taper and it worked. One of our moderators, Nanci did one successfully.


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