Dificid question and advice

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Elvira01
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Dificid question and advice

Postby Elvira01 » Wed Sep 16, 2020 11:44 pm

Hello all,

I am currently about to take my first dificid dose right now but am super nervous.

A little background here..I had my first cdiff occurrence a few months ago. I do already have ulcerative colitis so I really could not tell the difference as it feels like a typical bad UC flare. I got the stool tests done as protocol and it came back positive for cdiff. I took vanco right away but landed in the hospital days later because of the horrible side effects - feeling ill, nauseas, throwing up, diarrhea - honestly way worse off than before I took it. They game me flagyl IV in the hospital and I slowly started to feel better.
Fast forward to a few months later my naturopathic doctor for ulcerative colitis wanted to do a whole microbiome gut flora stool test and the c diff showed up. I got another test from my primary doctor and it first came out as indeterminate then a more sensitive test showed positive for toxin b pcr. I am just super bummed that I am here about to take a antibiotic for cdiff again when the last time i did, i ended up in the hospital. I am super nervous and just want to hear about others experience of dificid, maybe if it was better than vanco? It honestly sucks because my birthday is coming up an my tummy is feeling pretty good - considering whats been going on - i have actually been having formed stools and mild abdominal discomfort which i just correlated to mild ulcerative colitis discomfort.. I am surpirsed that the tests did come out positive. Anyways.. I just want to hear some reassurance that taking these antibiotics would be beneficial and any experiences anyone has had with the dificid medication?

Ali-Mar
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Re: Dificid question and advice

Postby Ali-Mar » Thu Sep 17, 2020 2:20 am

you might not have C Diff if you don't have the symptoms. I read and also my GI dr told me many people with UC test false positive for C Diff. Also testing positive for the bacteria Gene does not mean you have Toxin, you need to get the Toxin EIA test to confirm the toxin. Take Florastor see if that helps
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

roy
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Re: Dificid question and advice

Postby roy » Thu Sep 17, 2020 2:36 am

Testing positive is NOT the same as having c.diff.
The name of the bacteria is c.diff
The name of the disease is c.diff colitis.
C.diff can be part of the normal gut flora and if your body is not reacting to it then theres no disease and no treatment required.
Attempting to eradicate it can even result in a full blown relapsing disease.
Strict instructions are that normal stool should not be tested for c.diff for exactly that reason.
normal colonization with c.diff is common and not a disease.

Elvira01
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Re: Dificid question and advice

Postby Elvira01 » Thu Sep 17, 2020 3:48 am

[quote="Ali-Mar"]you might not have C Diff if you don't have the symptoms. I read and also my GI dr told me many people with UC test false positive for C Diff. Also testing positive for the bacteria Gene does not mean you have Toxin, you need to get the Toxin EIA test to confirm the toxin. Take Florastor see if that helps[/quote]

I was worried I would be taking the antibiotics for nothing also. I did test positive for toxins though.. it says positive for pcr toxin a/b and then positive again for toxin b gene pcr..

I just dont know what to do because the infectious disease doctors and my primary said to take it but the only reason this came up was becaue my naturopathic doctor started freaking me out telling me to take another test and it did end up coming out positive

roy
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Re: Dificid question and advice

Postby roy » Thu Sep 17, 2020 4:45 am

You need to see a c.diff expert.
If you dont have symptoms (asymptomatic) the guidlines say dont treat.
Some people can have a bucketfull of toxin but not need treating.
It can mean they have natural immunity to c.diff.
The much awaited vaccine will work like that.
We still get c.diff and it still produces toxins but because the vaccine has given immunity our body does not react to it and caused disease, exactly the same as tetanus (another clostridium bacteria)
Drs should not treat the test result, they are supposed to treat the patient.

beth22
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Re: Dificid question and advice

Postby beth22 » Thu Sep 17, 2020 8:53 pm

I tested positive on PCR for over two years, but did not have an active case.

Elvira01
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Re: Dificid question and advice

Postby Elvira01 » Fri Sep 18, 2020 12:40 am

beth22 wrote:
> I tested positive on PCR for over two years, but did not have an active
> case.

Di you test positive for pcr toxins and still not have the active disease?

Elvira01
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Re: Dificid question and advice

Postby Elvira01 » Fri Sep 18, 2020 12:43 am

roy wrote:
> You need to see a c.diff expert.
> If you dont have symptoms (asymptomatic) the guidlines say dont treat.
> Some people can have a bucketfull of toxin but not need treating.
> It can mean they have natural immunity to c.diff.
> The much awaited vaccine will work like that.
> We still get c.diff and it still produces toxins but because the vaccine
> has given immunity our body does not react to it and caused disease,
> exactly the same as tetanus (another clostridium bacteria)
> Drs should not treat the test result, they are supposed to treat the
> patient.

I talked to my primary doctor today and she assured me that i do have it because they did some "genetic" specific testing that shows the actual toxins..i dont know but according to her and the infectious disease doctors im supposed to take it. I told her that i had gotten sharp pains after taking them and she thinks its how my bodys reacting to it killing the infection. sounds like a joke to me ..

I am just frustrated because I have definitely noticed some side effects already - ringing in my ears all day long(which i told my doctor and she blamed it on a sore throat ive been having) and the increased abdominal pain, bloating, gas...etc.

Ali-Mar
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Re: Dificid question and advice

Postby Ali-Mar » Fri Sep 18, 2020 1:46 am

Do you have the C Diff symptoms, such as D and mucus etc?

I took Dificid for 60 days, there weren’t a lot of Side Effects ... I didn’t have any issue with it
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

Rev1119
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Re: Dificid question and advice

Postby Rev1119 » Tue Oct 20, 2020 11:38 am

Elvira01 how are you feeling now? Did you end up finishing the course of Dificid? Really hoping that you did and that you are feeling better! I could have written your original post; I have suspected UC and had my first C. Diff occurrence a year ago. Was put on vancomycin for 14 days and my side effects (almost identical to yours) also landed me in the hospital. I'm now facing a likely relapse (let's just say I'm symptomatic - my Dr. ordered stool testing which I dropped off today, results should be in tomorrow). Also feeling nervous and also wondering if Dificid will be better than Vanco for me!


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