Dificid - hoping this one works!

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hht7899
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Dificid - hoping this one works!

Postby hht7899 » Thu Sep 13, 2018 4:13 pm

Hi all -

Posting in hopes that someone has been in a similar situation and has come out healthy and beat this thing in the end! I'll try to make this as short as possible...

I am a 33 year old, previously healthy female. I contracted c diff after the birth of my beautiful baby boy back in April. I was diagnosed in May and put on Flagyl for two weeks. Symptoms returned two weeks later, so I was then put on Vanco for 10 days. Things seemed to be going well for 6 weeks! Unfortunately, mild symptoms returned... when I say mild, they were so mild I wrote them off as post-infectious IBS. I was only having one or two bad days a week, and then things would return to normal.

I went in for an appointment with my GI that had been scheduled two months previously. He decided to have me do a stool sample and test for a few things, c diff included, just for piece of mind. At this point I had been off of vanco for over two months. We both figured that everything would come back negative. Low and behold, I tested great on all counts, good white blood count, low inflammation markers, but still tested positive for c diff. To say I was devastated is an understatement.

I have read about false positives, and mentioned this to my GI, but he recommended that I treat regardless because I have a 5 month old and a 3 year old at home. So here we go again! This time I am on 10 days of Dificid.

I have read lots of good things about dificid, so I am staying hopeful. Has anyone beat this thing with dificid after having prior relapses? I would LOVE to hear some success stories! I am so ready to be well for my family, and back in a better place mentally - this disease really takes a toll on you not only physically but emotionally as well!

Ril
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Re: Dificid - hoping this one works!

Postby Ril » Thu Sep 13, 2018 5:08 pm

One or two days/week doesn’t sound like c diff. Are you sure you were positive for toxins and not just for the presence of
c diff? Many of us are c diff positive but if no toxins, no disease. A knowledgeable GI should know that and I hope yours does, but unfortunately not all know how to interpret the test results.

Ajs
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Re: Dificid - hoping this one works!

Postby Ajs » Thu Sep 13, 2018 10:31 pm

I agree. Based on your symptoms most doctors familiar with cdiff would have discouraged testing because you could just be a carrier. It’s usually after a pattern of 3 or more watery D for 3 consecutive days before you test. Unless of course you are experiencing extreme symptoms. Then you wouldn’t want to wait the three days. You’ll find that after you study this forum, you’ll likely have a more updated knowledge on protocol than many doctors. After all, in the scheme of things, cdiff is not the most common ailment. Flagyl isn’t even recommended to treat cdiff anymore, at least not as a first line defense. Try to find out if you tested positive for the spores only, or if you also tested positive for the toxins. It is possible that you will continue to test positive for the spores, but if you’re not experiencing the symptoms of active cdiff I don’t think you’re supposed to treat.

As far as the Dificid, I did really well on it. No side affects. If you’ve already started it I would continue taking it, but I would still call and ask the doctor about the presence of toxins.

I hope this helps. Congratulations on your newborn!! Enjoy every minute! They grow up faster than you can imagine!

beth22
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Re: Dificid - hoping this one works!

Postby beth22 » Fri Sep 14, 2018 1:08 am

To answer your question, yes, others have treated with flagyl and/or vanco, gone on Dificid and not had a return of c difficile. You can read about one man who posts as Macheon. He just posted in success stories.

Having said that, if you tested positive on PCR, then you might not have an active infection, especially with the mild symptoms you are having. I have tested positive on PCR for over two years and I have not treated. I am usually more on the C side these days. However, there are still foods that I don't tolerate well that I did prior to c difficile. I am told I am a "carrier". But, my doctors followed up the positive PCR with an EIA and that was negative for toxins.

However, since you already started the Dificid, you need to finish it. Hopefully, this will be the end of c difficile for you. Be careful changing diapers because a lot of infants carry c difficile as part of the gut flora. It doesn't do them harm, but he could pass it on to you.

Were you on antibiotics during your delivery or do you think you picked up the infection at the hospital?

roy
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Re: Dificid - hoping this one works!

Postby roy » Fri Sep 14, 2018 1:52 am

To add to Beth's comment.
3 out of 4 babies have c.diff and would test positive.
That's 100% normal.
Do not agree to be tested to see if it's gone.
C.diff is only a disease if it causes symptoms.

Machaon
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Re: Dificid - hoping this one works!

Postby Machaon » Fri Sep 14, 2018 12:19 pm

hht7899 , we have completely opposite experiences.

You tested positive for C-diff, without the symptoms of C-diff.

I tested negative for C-diff, with nasty C-diff symptoms.

I had finished a tapering/pulsing round of Vancomycin and really felt good. But by the 6th day after stopping the Vancomycin, symptoms came back with a vengeance! I started back on the Vancomycin and, because I had relapsed twice on Vancomycin, I called my GI to see if he would prescribe Dificid. He sent a prescription to my mail order for Dificid, but asked me to come in for a c-diff stool test.

My stool test was negative, probably because, unbeknownst to my GI, I was taking Vancomycin. He told me NOT to take the Dificid. Obviously, I ignored his advice and as soon as I received the mail order Dificid I stopped taking the Vancomycin and started taking the Dificid. Thank God I had a bunch of Vancomycin to tide me over and improve my symptoms, until I received the Dificid.

I've now been free from C-diff or any other intestinal or digestive issues for one year from Sept 12, 2017.

Best of luck and health to you and your beautiful baby boy and your 3 year old, and, of course to your hubby also! :)
Last edited by Machaon on Fri Sep 14, 2018 12:28 pm, edited 1 time in total.
Male 74. S Florida. Retired systems analyst and programmer

1987 had CHF, perm afib, sensitive asthma, autoimmune

Ex C-diff (since 9/12/17) after 10 days dificid

Diet:6 low cal meals <1500 cals, 2 eggs a day, 4 large salads, cereal, yogurt, cheese

hht7899
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Posts: 9
Joined: Thu Sep 13, 2018 9:15 am

Re: Dificid - hoping this one works!

Postby hht7899 » Fri Sep 14, 2018 12:23 pm

My GI said that the test he did tests for toxins, a PCR test I believe, and that is what came back positive. Unless a PCR tests for the spores? Does anyone know??

I'm so confused by all of this. I am just going to finish my dificid (last day is Sunday, thank God because I miss breastfeeding already and it's only been 7 days... yes, I have been breastfeeding throughout this ordeal) and hope that I'm done with this.

And also, I'm pretty sure I picked up the infection from the hospital - my delivery went fine, but I was re-admitted 2 days after going home for a severe bladder/kidney infection with fevers of 103. I was in the hospital for 5 days being pumped with three different IV antibiotics, one of which was clyndamicyn, which after being diagnosed I have realized is one of the main offenders. Lucky me.


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