Giving up

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Lid49
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Giving up

Postby Lid49 » Mon Oct 23, 2017 12:23 pm

Well I finish deficid last Monday, call Mayo clinic and ask the next step. Normally if D start I was supposed to call and be scheduled for FMT, Well this is not the case, they need a stool sample, for what ? As far as I know the result will be still positive, according to my ID doctor. I'm tired for months I've been fitting this disease , I have FMT done, vanco taper many times. This is so hard, I do not see the end of this, change meds for depression, and so on..... I feel like I'm relapsing today, I know for sure but still I have to wait D and to submit a sample the to call Mayo.
Thank you for being hear.
Lidia

beth22
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Re: Giving up

Postby beth22 » Mon Oct 23, 2017 5:54 pm

I know it is hard, but I guess Mayo has their protocol. Also, you want to be sure that you are relapsing and don't have something else - IBS, SIBO, or even a different bacteria. Submit the stool sample and if it is positive, then hopefully, you can schedule your FMT and take the medication to prep for it. Let us know how it goes. How long have you had symptoms - just a day or two or ever since you finished the Dificid?

Lid49
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Re: Giving up

Postby Lid49 » Mon Oct 23, 2017 6:08 pm

Hi
After one week finishing deficid the symptoms started. I guess this is my only option. My fear is I have a tendency to get constipation with cdiff, this is how was the start for me, dilated sigmoid and very bad case cdiff. I will see how tomorrow morning will be.
Thank you so much.

NanciT
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Re: Giving up

Postby NanciT » Mon Oct 23, 2017 10:57 pm

There is another option to the FMT. A Dificid taper. I relapsed after 10 days but then went on a long taper which finally got rid of it. Look under CDI and there are tapers listed.
I would talk with your GI about it

I know how difficult all of this is, we are here to support you through!

NanciT

georgina
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Re: Giving up

Postby georgina » Tue Oct 24, 2017 3:23 am

Lid49
You have a stubborn Cdiff case and ten days of Dificid are not enough for you to cure the infection , you should have pushed for a long course of Dificid in the first place. Talk to your doctor and ask to extend the Dificid regime , maybe for a month. Long courses of Dificid were successful in many cases of relapsing Cdiff.

Lid49
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Re: Giving up

Postby Lid49 » Tue Oct 24, 2017 6:33 am

Hi
Thank you for replaying ,
NanciT and Georgina I did tell the DR, I ask for deficid taper and the FMT but DR from Mayo very inflexible, The answer was that no deficid taper that she is aware, and if I relapse I have to have a stool test and then FMT. Praying that is all I have for now.
Thank you so much .

Davidtm
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Re: Giving up

Postby Davidtm » Wed Oct 25, 2017 3:02 am

I just wanted to say you are not alone and there are many people who have gone through what you are going through now. I know all too well how hard it can be and not being able to see the end of it all. But I believe there is a winning combination for everyone. Everyone's case is different that relapses and I think everyone finds something that works for them. I was flagy, vanco, vanco taper, high dose vanco, fmt, high dose vanco long term, then second fmt. That lasted over 10 months and the second fmt was 8 months ago. So reading back on some of my early posts I can see a lost man that didn't see the light at the end of the tunnel. I wish I could show you and go back and show myself that there is a light at the end of the tunnel. The fear and stress of another relapse can trigger some stomach issues too. I hope you test negative or if you do find a cure in your next fmt! Sometimes it takes more than one.
keep it up and never give up. You've got this!

Lid49
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Re: Giving up

Postby Lid49 » Wed Oct 25, 2017 7:53 am

Thank you Davidtm
I needed that, It is a waiting game for now. Praying and hoping .

amg
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Re: Giving up

Postby amg » Wed Oct 25, 2017 11:47 am

Lidia,

I agree with Georgina that a longer Dificid course with a taper is an excellent option to give the body enough time to build back good flora after a long time of recurrent c diff. Dificid also has significant ant-spore activity. It was the cure for my daughter who had c diff 5 times within a 6 month period and was finally cured with a Dificid taper while we were contemplating FMT. She is now c diff free for almost a full year (mid-November), and she is thriving. (some mild PI-IBS, but overall strong and feeling good)

The paper I used to convince our ID doc was this:

https://academic.oup.com/ofid/article/d ... r-Patients - Dr. Stuart Johnson uses this (he's an author on the paper) to good effect with his patients at Loyola University Medical Center.

I also showed our doc this paper: https://www.researchgate.net/publicatio ... _gut_model to give him more evidence that a taper would be helpful.

I recommend printing out both of these papers and giving them to your doc. Or email them to your doc if you can communicate that way.
Doctors have to start using more common sense and thinking outside of the box!! Especially when it comes to this f*&$#@* illness that turns our lives upside down.

I too think it's only a matter of time until you are feeling better and on the road to recovery. Just keep fighting and advocating hard for yourself! Bring a family member in with you to advocate with you if you don't have the energy to be assertive. Good luck. i will be praying for your quick return to health.

BTW, the taper that worked for my daughter was Dificid 1 tab twice a day for 14 days, 1 tab once a day for 14 days, one tab every other day for another 7 tablets.

Lid49
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Re: Giving up

Postby Lid49 » Wed Oct 25, 2017 2:56 pm

Thank you
I have that deficid taper, I mentioned to the Mayo Dr. I will ask my I'D doctor, but she is the one ho send me to Mayo for FMT.
Thank you for all the support and encouragement.
Lidia.

Ril
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Re: Giving up

Postby Ril » Wed Oct 25, 2017 3:40 pm

Lid, remember that you are the “customer” and you have the final say in your treatment.
If you want to try the Long Difficid taper after reading the paper Amg sent you, and the dr won’t review it or doesn’t agree, it is your choice to find a dr who agrees with your request. If you go along with another treatment plan, that too is up to you.

I just want to remind you that it is your body and you have the ultimate say in your final treatment plan after consulting with drs and doing the research.

Good luck,
Rita

cnatra
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Re: Giving up

Postby cnatra » Thu Oct 26, 2017 11:30 pm

Go for Dificid taper or a double dose (2 ten day rounds)
and see if Zinplava is an option too with the ID


That (I think so far) is what finally worked for me


Hope you beat C Diff soon !!!!

georgina
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Re: Giving up

Postby georgina » Fri Oct 27, 2017 12:53 am

Yeah , Zinplava is definitely is a good option to consider along with a long course of Dificid .Zinplava , I think that needs to be prescribed by a infectious disease doctor , don't know if GIs can recommend it.

Lid49
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Joined: Tue Sep 05, 2017 4:39 pm

Re: Giving up

Postby Lid49 » Fri Oct 27, 2017 8:08 am

Thank you all for advice, I still do not know if it is a full relapse . Finish deficid on Monday 16- I have crump, gas, nausea BM are mushy 2 or 3 per day in the morning. Today my ID Dr will call me . Will see.
Thank you again .
Lidia C

Bobbie
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Re: Giving up

Postby Bobbie » Tue Jan 23, 2018 4:02 pm

Lidia,we call c diff the www disease. - Watch. Wait, and Worry,

When my son had c diff in 1979, there were no support groups - same when I had it in 1993. Scary and lonely. Now, there are many you can bounce ideas off. Ours is the first one and, naturally, I think it is the best but I am prejudiced.

Hang in there. Something will work. Try what the moderators suggested.


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