Taking Antibotics FOREVER to Ensure the C-diff wont come back?!!!

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lkbeck
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Taking Antibotics FOREVER to Ensure the C-diff wont come back?!!!

Postby lkbeck » Fri Jul 28, 2017 11:25 pm

Hello everyone, My name is Lauren. I have posted quite a few times and have a long story. I will try to make things short. Everything for me started in Feb. When one night I thought I had food poisoning since my boyfriend and I ate the same meal and got ill. Then however things continued to worsen for me within the week looser stools. Then diarrhea happened ended up in ER. First fagly, then it failed went to Vanco that failed as well. Then third time got fevers of 103 and 22+ going to bathroom. Was put on Vanco again. Then got off Vanco and got a fecal transplant June 28th. Now three days ago got fever of 101 and 15+ going to the bathroom. Went to get stool tested and once again positive. Now my GI doctor is claiming that I might have to be on antibiotics for the rest of my life to ensure it never comes back. WTF?! Has anyone had to be on antibiotics for the rest of their life to get rid of C-Diff? I do not understand this makes absolute no sense whatsoever. I have never read or heard of such a thing. Any input on this information would be great. Because I think just getting a second transplant will prevent it from coming back. And no I have not taken antibiotics since transplant, or any other meds besides my birth control and Tylenol to get this fever down. I also was diagnosed with microscopic colitis but my GI said that shouldn't give me fevers.

NanciT
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Re: Taking Antibotics FOREVER to Ensure the C-diff wont come back?!!!

Postby NanciT » Fri Jul 28, 2017 11:35 pm

Hi Lauren

I would get another opinion. I changed GI's a few times during my CDIFF nightmare. Is there a reason you have not tried Dificid? It finally cured me with a long taper but there are many on the site it has worked for. Look into another GI and ask for Dificid. If you read under CDI there is information on the site and tapers that several people have used.

I have not heard of anyone having to stay on Vanco the rest of their life.

NanciT

lkbeck
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Re: Taking Antibotics FOREVER to Ensure the C-diff wont come back?!!!

Postby lkbeck » Fri Jul 28, 2017 11:47 pm

Hey Nanci, I have heard a lot on this site about that drug but I have been to an infectious disease doctor, and 2 GI doctors and other general doctors trying to handle this and no one has ever brought up this drug. I've been told about fidaxomicin but since I have the crap insurance they were asking $4,000 grand for it which not sure how much the insurance would pay but it was insane. So I never tired it but in my eyes I feel like the ultimate treatment is FMT. So I feel like an antibiotic isn't as valuable as FMT due to the fact that its not so expensive, not killing my gut bacteria, and gut bacteria is being replaced. Yeah I am concerned and do not know what to think with him telling me that.

linnyg
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Re: Taking Antibotics FOREVER to Ensure the C-diff wont come back?!!!

Postby linnyg » Sat Jul 29, 2017 12:12 am

Fidaxomicin is Dificid. If you have insurance, you're in luck. Merk has a coupon program and it will only cost you $50.00. It is great because it destroys very little gut bacteria and targets clostridium. http://www.dificid.com I agree you need another opinion.

lkbeck
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Re: Taking Antibotics FOREVER to Ensure the C-diff wont come back?!!!

Postby lkbeck » Sat Jul 29, 2017 12:20 am

Thanks Linnyg, the only issue is the doctors already ordered me vanco, and I also can not swallow pills. I have to crush pills If I have to take them. Why this is because I had multiple surgeries on my throat to help with the abnormality of my esophagus and had previously had acid reflex disease.

OCmama
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Re: Taking Antibotics FOREVER to Ensure the C-diff wont come back?!!!

Postby OCmama » Sat Jul 29, 2017 12:36 am

I would also reccomend new doctor (infectious disease). I would also reccomend Dificid, although I'm not sure if it can be compounded. My daughter went through the exact same course as of treatment as you with failed flagyl, failed vanco and stooling well over 20 times per day pulse very high fevers (she is 3). My daughters ID put her on a vanco pulse, which (please God, and knock on wood) 5 months later appears to be holding.

I would definitely find a C. diff specialist, hang in there. I am praying for you.

lkbeck
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Re: Taking Antibotics FOREVER to Ensure the C-diff wont come back?!!!

Postby lkbeck » Sat Jul 29, 2017 1:01 am

Thanks Ocmama,
However I had an Infectious Disease Doctor as well and they did not even believe me that it was C-Diff and kept referring me back to the GI doctor so its been a roller coaster, but I think I will have to find another one again. Yeah I feel like there should be more Gastro specialists in C-Diff I don't know why there isn't. Thank you <3

roy
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Re: Taking Antibotics FOREVER to Ensure the C-diff wont come back?!!!

Postby roy » Sat Jul 29, 2017 6:11 am

If a Dr has told you they don't think it's c.diff it might be time to consider if they are correct!

Drake
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Re: Taking Antibotics FOREVER to Ensure the C-diff wont come back?!!!

Postby Drake » Mon Aug 07, 2017 3:22 am

I've too had an FMT. Mine was on 7/14 and I'm still struggling. I've never been told by a doctor that I will need to be on antibiotics for the rest of my life. I know every situation is different though. I'm sorry to hear your struggling as well. I hope you feel better.

beth22
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Re: Taking Antibotics FOREVER to Ensure the C-diff wont come back?!!!

Postby beth22 » Tue Aug 08, 2017 1:46 am

Go to a different doctor. One GI that I saw early in my experience with c diff recommended that I get my colon removed. I never went back to him. Dificid might be crushable. It is a tablet vs a capsule like vanco. I would talk to your doctor about it.

Lisa33
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Re: Taking Antibotics FOREVER to Ensure the C-diff wont come back?!!!

Postby Lisa33 » Tue Aug 08, 2017 10:01 am

I definitely would go to a different doctor as well. I am not sure where you live, but you need somebody who specializes in c-diff. There is a list of doctors under the "Doctors" forum by state that may be helpful. Even the most resistant of cases on this site were finally cured and didn't need to be on antibiotics for the rest of their life. I too, would look into Dificid or a Dificid taper.

Bobbie
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Re: Taking Antibotics FOREVER to Ensure the C-diff wont come back?!!!

Postby Bobbie » Wed Aug 09, 2017 4:23 pm

I agree - use a different doc.

I was on Vanco (off and on)"for 4 years during my last bout of c diff. It allowed me to work,and lead a somewhat normal life.
Not many docs now would agree to it - this was 1993-1997.

Now. I would try Dificid.

I think docs pass "difficult" patients back and forth because they do not want to deal with us.

I, too, had a FMT but it was a not a mziracle cure. It - or something - finally worked after several miserable months. It does work immediately for some.

Never have been "lucky,"

Best wishes.

AliSue
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Re: Taking Antibotics FOREVER to Ensure the C-diff wont come back?!!!

Postby AliSue » Wed Aug 30, 2017 11:16 am

I've never heard of that either, and as others have said, it's best to consult with another GI specialist. I changed during my six-month bout with C. Diff. I had gallbladder removal surgery and was put on Clindamycin afterwards. Not long after my discharge, I presented to the ER extremely ill. They sent me home saying they couldn't find anything. I left in tears. They did take a stool sample, so the next day I received a call saying I had C. Diff.
I was prescribed Flagyl & advised to take Florastor. The C. Diff. ended up coming back, so I was prescribed Flagyl & Vanco. It came back once again, so they just put me back on the Flagyl & Vanco. This is when I switched my GI. I was thoroughly disgusted. Ultimately, it came back once again, so the new GI put me on Difficid. That actually took care of it. It took two months after that for me to gain my stamina back. I spent eight months on my couch/bed....and running to the bathroom. Sometimes crawling. I now have IBS-D that I live with every day, so my life has changed dramatically.

I was told there are different strains of C. Diff. by my new GI. Some strains respond to the Flagyl & Vanco., where the other strain only responds to Difficid. But the insurance companies don't like prescribing the Difficid because of its expense; 20 pills cost $1600, as of 2015/2016. The script was 2 pills a day for 10 days. I would have paid for it myself just to get rid of it quicker. I couldn't work for eight months! I also have 5 children and a husband that depend on me, so it was a horrible experience for all of us. I'm 49 and hope to have many healthy (C. Diff.-free) years ahead of me. My one daughter's in P.A. school now, just graduated from college as Biology/pre-med major, and I know she can appreciate and sympathize now with people who she encounters that have C. Diff.

I'm always concerned with future bouts of C. Diff. following surgeries, so I was advised by my GI to start taking Florastor two weeks prior to any surgery to help build up the good bacteria needed to fight off C. Diff. And to not take Clindamycin! It's a superb antibiotic because it kills everything, BUT it kills off that good bacteria, too, that we need.

They also have a pill you can take instead of the fecal transplant that has been in the trial stages -- perhaps on the market now -- but I'm not sure how effective that is.

You're definitely not alone, and these forums are so helpful because we need the support from others that fully understand what we go through. And sometimes we learn new things from other people's experiences.

Best of luck to you (and everyone else) in getting rid of this awful disease and keeping it away! Sending prayers your way.....

Alicia (fellow C. Diff. fighter)


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