Still Positive

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beth22
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Still Positive

Postby beth22 » Sun Aug 21, 2016 5:39 pm

Tested again yesterday and am still positive for c difficile after two months. I was supposed to do FMT enemas a few weeks ago, but my donor got D and vomited, so now it is on hold until mid or end September. All of this because I had to take antibiotics when I was hospitalized in April/May. It took about 6 weeks to show up, but now it won't leave. Am so fed up...

roy
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Re: Still Positive

Postby roy » Sun Aug 21, 2016 6:16 pm

Some people carry c diff and are immune to toxins (to a varying degree).
Treat the patient and symptoms!
NOT THE TEST.
Don't hit that gut flora reset button!

amyc
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Re: Still Positive

Postby amyc » Sun Aug 21, 2016 9:10 pm

Sorry to hear that. Are you thinking about taking the Dificid before you do the enemas? Your doctor prescribed it, right?

beth22
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Re: Still Positive

Postby beth22 » Sun Aug 21, 2016 9:42 pm

No, I am not having D, so no Dificid. Just the enemas to suppress anything that might "be smoldering" still as my doctor put it. What I have is low grade, and if I take an antibiotic to treat it, I will definitely relapse big time or as Roy and my doctor said, hit the reset button. It's just so darn depressing though. So many years, and you think you are over it, and then back it comes, albeit not with the same severity, but it is still there. It came back with D 6 weeks after I had to be treated with antibiotics. I thought I was in the clear. I only treated with Pepto for a few days and things settled down D-wise, but still have other discomfort and symptoms. I have just been taking a little Pepto here and there as needed - not very often and just for a day at a time.

With 3 positive tests now, I guess I am eligible for a colonoscopy transfer if things get worse and I am also looking into the SER-109 Phase 3 trials, if they are still going forward after the disappointing Phase 2 results. Got to do something. Enough is enough!

amyc
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Re: Still Positive

Postby amyc » Sun Aug 21, 2016 10:47 pm

At UCLA they have FMT pills that might be worth a shot. Or get in touch with Dr Louie up in Canada?

beth22
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Re: Still Positive

Postby beth22 » Mon Aug 22, 2016 1:38 am

UCLA only uses OpenBiome. I qualified for them - you actually only need one positive, but I don't want to use OpenBiome. I have a doctor here who can do it via colonoscopy. He will use either OpenBiome or your own donor. I would not go the pill route either in my case. I got SIBO from doing the NG tube transfer before and don't need that to get worse again. Hopefully, the enemas will do the trick. They worked fine when I had to take antibiotics in 2014. I did them as a preventative and did not relapse. Last year, I did have a positive test as well and after doing the enemas myself, was c diff free until this June after the antibiotics. I just had hoped never to have to do that again. Not exactly what one enjoys doing...

georgina
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Re: Still Positive

Postby georgina » Mon Aug 22, 2016 2:47 am

Why did you get tested ? You wanted to see if it cleared up after the trip?

getwellsoon
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Re: Still Positive

Postby getwellsoon » Mon Aug 22, 2016 6:21 am

I am so sorry Beth. Maybe wait until mid Sept and do the at home enemas. I guess at this point you are a carrier. I am praying for the cure to be out soon so you can finally be rid of this beast for good. Won't that be a wonderful day for us all. Hang in there and don't lose hope. Praying for you my friend.
CAROL

Lisa33
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Re: Still Positive

Postby Lisa33 » Mon Aug 22, 2016 9:57 am

As Carol said, maybe you are a carrier of this awful illness. As the light in this whole ordeal, at least you are feeling better as far as D goes. I want this to be over with for you once and for all. Enough is enough. Mid Sept is almost here, so it probably won't hurt to do the home enemas, since it's helped in the past.

Hang in there and don't let this positive test get you down! It's how you are feeling that counts.

Hugs to you,
Lisa

beth22
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Re: Still Positive

Postby beth22 » Mon Aug 22, 2016 10:36 am

I am definitely a carrier, but I have tested negative pretty much for 4 years, with the exception of Dec/Jan 2014/15 and I did the enemas and then was negative until just recently. If I felt fine, I would not have tested, but I don't feel fine at all and I have to go back to work. The toxins cause burning, pain, frequency, loose stools, a lot of gas, etc. It is not the way I want to keep living. I have no choice I guess, but to do the enemas, much as I don't want to do them. Just hope it doesn't make things worse. We still don't know why donor had D last month, although stool culture did not show anything. Is being tested for allergies in a couple of weeks.

I'm trying to stay positive, but it is hard. When I go back to work, it will be stress and that will just make things worse and I have another 3 years minimum before I can retire.

NanciT
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Re: Still Positive

Postby NanciT » Mon Aug 22, 2016 11:03 am

Beth

I am so sorry you are going through this. My thought was maybe the enema's? The stress of work will not help this at all.
Any possibility to go out on disability while you work through this? I think we have similar positions and it is both physically and emotionally wearing. I also worked through this entire...nightmare and have the thought if it returned I may have to take the time off to get through this. It is very difficult dealing with this illness and having that pressure over your head, especially trying to get in every morning.
I can understand the terrible frustration
Sending hugs!
NanciT

Bobbie
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Re: Still Positive

Postby Bobbie » Tue Aug 23, 2016 2:20 am

Beth,
Continue to hang on. Glad you are home from trip and sounded like a fun one.

Someday - maybe in this century - we will all be over c diff.

Fingers crossed.

Dobies#1
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Re: Still Positive

Postby Dobies#1 » Tue Aug 23, 2016 9:58 am

Beth, I'm so sorry to hear all this! Just wanted to let you know I'll keep you in my prayers. Try to hang in there my dear! ((((((HUGS))))))

ResearchGrandma
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Re: Still Positive

Postby ResearchGrandma » Tue Aug 23, 2016 9:53 pm

My symptoms with C. diff were similar to your symptoms. I did take many courses of vancomycin, but it did not totally eradicate the infection since I would relapse after about 6-8 weeks, but my symptoms did not worsen each time - stayed the same. Finally I took 10 days of dificid right after 2 weeks of vancomycin, and that seemed to work. It is my understanding that dificid is fairly specific for C. diff, so I am not sure why you would not consider taking it before doing the enemas. That way you would surely drastically reduce the concentration of C. diff, and then immediately replenish the flora.

beth22
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Re: Still Positive

Postby beth22 » Wed Aug 24, 2016 1:16 am

Both doctors said not to take it because whatever I have is very low grade, I guess, since I am not having D. In the past the vanco made things worse in the long run and I can only assume that the Dificid might do the same and irritate things even more. I understand it is a harsh drug for many to tolerate well. If the enemas don't work without taking meds, I can always do it again and take the Dificid. I'm hoping I won't even have to do them. Will see what happens in the next few weeks.


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