C Difficile: Do you have memory issues, disoriention, confusion?

Posted by dpete19743 @dpete19743, Jan 4, 2020

I have c diff and have had it for almost 2 years I am finally getting an FMT however here is my question.

Do c diff patients have memory issues, disoriention, confusion?? Details and any info will be helpful

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I'm having memory issues, but everyone tells me it's due to my age, stress, and not getting enough sleep or eating well. It's becoming very scary because I can remember some things, and I want to forget what happened in 2012 but that is very vivid like it happened yesterday. I can't remember what happened these last two years, and the doctors tell me everything is fine, and it's all in my head.

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@david33

I'm having memory issues, but everyone tells me it's due to my age, stress, and not getting enough sleep or eating well. It's becoming very scary because I can remember some things, and I want to forget what happened in 2012 but that is very vivid like it happened yesterday. I can't remember what happened these last two years, and the doctors tell me everything is fine, and it's all in my head.

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I had cdiff five times til they did a transplant and I never recovered, can't remember simple words, for instance, the other day I fixed pancakes and as I sat to eat I couldn't remember the word pancake. I sat there scared and my husband looked at me not knowing what to say. This is everyday and to make matters worse I have a brain tumor but they say that isn't causing this. Right in the middle of a conversation I can't remember what I was talking about, total black out. I have had heart attacks, cancer, fibro, CFS and now this brain tumor facing surgery and Cdiff is stuck in my head forever. I have told every doc and the neurologists say it is vestibular migraines. I don't trust any of them

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I didn’t have memory loss but when ever my stomach acts up I get massive anxiety and feel very strange and have to cry to relieve. I have anxiety a lot since cdiff but it happens sometimes for no reason and it is so bad that I just don’t know what to do or very it is happening. Cdiff has changed my life but not for the better😓

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@losthope

I didn’t have memory loss but when ever my stomach acts up I get massive anxiety and feel very strange and have to cry to relieve. I have anxiety a lot since cdiff but it happens sometimes for no reason and it is so bad that I just don’t know what to do or very it is happening. Cdiff has changed my life but not for the better😓

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I too still feel anxious and have bad anxiety since I have had cdiff it changed me. And I think I have IBS eveytime my stomach act up I feel cdiff is coming back which is now 5 months after stopping antibiotic don’t think it will come back after that long but it is stuck in my head 🙁 I cannot even gain my weight back it changes your body forever and still dealing with frequent bowel movements.

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@mhi

I too still feel anxious and have bad anxiety since I have had cdiff it changed me. And I think I have IBS eveytime my stomach act up I feel cdiff is coming back which is now 5 months after stopping antibiotic don’t think it will come back after that long but it is stuck in my head 🙁 I cannot even gain my weight back it changes your body forever and still dealing with frequent bowel movements.

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I did gain wait back plus more. I can’t eat red meat or certain fruit. It is horrible. I too have fear of it coming back especially if I go o an antibiotic. I have reflux bad and can’t take anything because it also can trigger the cdiff. I work in healthcare and studied cdiff and there is so many factors also unknown.

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How long did it take you to gain the weight back? How long it took for your bowel movements to regulate? And how long you took probiotic for? Do you still take them? Yes I have the fear of going on antibiotic. I don’t think it can come back after few months if you don’t take antibiotics no?

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@judik

I cannot seem to open a new thread so hope this is not to out of the scope of this one but just had an FMT in Jacksonville, yesterday (because of recurring C-DIFF) and am concerned about whether I should continue to take probiotics or not ? Does not seem to be a medical consensus on this.

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Hi,
I am a Research Coordinator for a C-diff study in Lancaster, PA.

“ Probiotics & diet: No studies have shown that taking probiotics after FMT improves the chance of successful treatment. If you do want to take a probiotic, be sure to ask your doctor for recommendations. Generally, diets high in fiber seem to support healthier bacteria.”

https://www.emoryhealthcare.org/ui/pdfs/ejch-physician-forms/post-fmt-patient-guide.pdf
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@sswonger and @losthope, how interesting that you both have been or are involved in research about C. difficile. Great to have you in this discussion.

@sswonger, the info you provided is in reference to probiotics after fecal microbiota transplantation (FMT) and helps answer @judik's question about taking probiotics after FMT or not.

@losthope, did you take probiotics while on antibiotics? How long?

@mhi, if I understand correctly, you're asking about the effectiveness of taking probiotics after treatment with antibiotics. In this video, Mayo Clinic gastroenterologist Dr. Joseph Murray, discusses the benefits of probiotics on Mayo Clinic Radio, namely:
- Probiotic dietary supplements
- Difference between prebiotics and probiotics
- Fecal microbiota transplant
- Mayo Clinic's ongoing initiative in the area of microbiome research

Skip to 15:00 to hear Dr. Murray talk about C difficile.

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@colleenyoung

@sswonger and @losthope, how interesting that you both have been or are involved in research about C. difficile. Great to have you in this discussion.

@sswonger, the info you provided is in reference to probiotics after fecal microbiota transplantation (FMT) and helps answer @judik's question about taking probiotics after FMT or not.

@losthope, did you take probiotics while on antibiotics? How long?

@mhi, if I understand correctly, you're asking about the effectiveness of taking probiotics after treatment with antibiotics. In this video, Mayo Clinic gastroenterologist Dr. Joseph Murray, discusses the benefits of probiotics on Mayo Clinic Radio, namely:
- Probiotic dietary supplements
- Difference between prebiotics and probiotics
- Fecal microbiota transplant
- Mayo Clinic's ongoing initiative in the area of microbiome research

Skip to 15:00 to hear Dr. Murray talk about C difficile.

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Thank you for sharing this appreciate it!

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@colleenyoung

@dpete19743 I noticed that you wished to post a URL to a web resource with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

Drug Companies and Doctors Battle Over the Future of Fecal Transplants (NY Times) https://www.nytimes.com/2019/03/03/health/fecal-transplants-fda-microbiome.html

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Excellent article. Finch is the company our office is doing the clinical trial with. Hoping to hear from FDA soon. I have a waiting list of Pt’s waiting....

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