Vancomycin Taper followed by Difficid Chaser

Treatments, possible treatments, unsubstantiated/unproven treatments. Consult your doctor first.
HeatherV
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Vancomycin Taper followed by Difficid Chaser

Postby HeatherV » Wed May 31, 2017 8:03 am

After rounds of Flagyl, Vancomycin, two failed FMT's and Difficid I was prescribed Vancomycin and told I would be on it for the rest of my life. I then developed severe Tinnitus and my doctor told me to go off of Vancomycin. I researched and found a Vancomycin Taper regimen and followed it with a Difficid Chaser. In addition to the drugs, I took 32 Florastor daily and 8 oz. of kefir daily. I am almost 90 days drug and symptom free after completing this regimen:

2016/2017
Vancomycin taper:
125 mg. 2 x daily for 7 days
125 mg. A day for 7 days
125 mg. Every other day for 7 days

Difficid Chaser:
200 mg. A day for 7 days
200 mg. Every other day for 30 days
200 mg every 5 days for 21 days
200 mg. Every 7 days for 40 days
200 mg. Every 9 days for 14 days, last pill March 8, 2017

roy
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Re: Vancomycin Taper followed by Difficid Chaser

Postby roy » Wed May 31, 2017 9:29 am

Thanks for posting.
That's a very unusual taper with very low doses and duration to start with and around half that is normal prescribed.
Most Drs use a full course and then taper from that.
Its almost proof that lower doses could be better as it allows flora recovery.

I hope the amount of florestor is a typo!

midway
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Re: Vancomycin Taper followed by Difficid Chaser

Postby midway » Wed May 31, 2017 9:33 am

At one time, I had started to wonder if I might be stuck with taking vancomycin for the rest of my life. I hadn't actually heard of a doctor suggesting such a thing, though. How great that you were able to find a treatment that worked for you!

I echo Roy. 32 Florastor daily would be very nontraditional.

NanciT
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Re: Vancomycin Taper followed by Difficid Chaser

Postby NanciT » Wed May 31, 2017 9:37 am

This is a very different taper then what I did take and also those who have shared theirs on the site. Mine was a Pulse/Taper for 3 months.
I do not have the exact dose. It was a research paper I found in 2014. I also question the Florester


NanciT

HeatherV
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Re: Vancomycin Taper followed by Difficid Chaser

Postby HeatherV » Thu Jun 08, 2017 8:07 am

So sorry, yes the Florastor was a typo. Should have been 2 per day. I am now 90 days post meds and relapse free. I have stopped taking the Florastor as it was making me nauseated. GI put me on a low residue diet and that is working really well. Am off dairy. Feeling better each day and am so thankful for the paper I read which saved my life. "Novel Fidaxomicin Treatment Regimens for Patients with Multiple C. Diff. Infection Recurrences that are refractory to standard therapies" by Melinda Soriano, Larry Danziger, Dale Gerding and Stuart Johnson. I actually wrote to Dr. Johnson and thanked him.

NanciT
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Re: Vancomycin Taper followed by Difficid Chaser

Postby NanciT » Thu Jun 08, 2017 9:43 am

SO happy it worked for you Heather. I found the paper. Interesting I also was in a similar situation in 2014 and found a different research paper which I also feel saved me.
I still have Post IBS and a few issues but I am 2 years out and feel it was most likely my Dificid taper that led to the extensive IBS. I manage it and also feel grateful to get rid of this nightmare illness.
Wishing you the best in your recovery!
NanciT

georgina
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Re: Vancomycin Taper followed by Difficid Chaser

Postby georgina » Fri Jun 09, 2017 1:05 am

So happy for you Heather , congratulations , now you just have to focus on healing your gut. Looking forward to read your success story !

HeatherV
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Re: Vancomycin Taper followed by Difficid Chaser

Postby HeatherV » Sun Jun 11, 2017 7:23 am

Before I started the Vancomycin taper followed by Difficid chaser I had been on Vancomycin 500 mg. A day for 2 months. I was diagnosed on June 15, 2016 and between that time and when I started the taper in November 2016 I was on Flagyl, Vanco, had two failed FMT's and one course of Difficid. This is in reply to Roy, with apologies that my post didn't include the fact that I had been on long term Vanco.

HeatherV
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Re: Vancomycin Taper followed by Difficid Chaser

Postby HeatherV » Sun Jun 11, 2017 7:28 am

Thank you Georgina. The only issue I have is fatigue, not debilitating, but there. My family doctor says after all and the type of drugs I took, my body is healing and she feels I will gradually get back to my normal self. Does/did anyone else have fatigue as they were getting better and off of meds?

roy
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Re: Vancomycin Taper followed by Difficid Chaser

Postby roy » Sun Jun 11, 2017 1:05 pm

Thanks for explaining you were on full dose vanco before starting the taper, that makes more sense.
I would think that after so much chemical assault and sickness your body will want to rest itself and recover.
Listen to it, nature makes you feel tired for a reason!

HeatherV
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Re: Vancomycin Taper followed by Difficid Chaser

Postby HeatherV » Sun Jun 11, 2017 3:35 pm

Thank you Roy. So glad you pointed out that I missed that very important aspect of my treatment. Thank you also for encouraging words about taking care of myself. My wonderful family doctor says I am fragile after that chemical assault and the C. Diff. Itself. I want posters to know that you can get better with the right treatment. When the FMT's failed the specialist told me I was in the 9%, those for whom all treatments fail and Vanco ad infinitum was my future. I am so happy that I got Tinnitus from the Vanco because it made me finally take charge and look for alternatives including applying to every clinical trial available. The clinical trial folks were compassionate and helpful and put me onto the GI who guided me through the taper and chaser and if I had relapsed would have administered the clinical trial treatment. I am beyond thankful and encourage all of you to learn from these posts and chart your own recovery with positivity. The other day I felt "happy", something I had not felt since this started a year ago. I am well, I am healthy.

Bobbie
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Re: Vancomycin Taper followed by Difficid Chaser

Postby Bobbie » Wed Jun 21, 2017 12:08 am

Heather,
Congrats. Continue to feel better. May everyone be as active in his or her own treatment as you are,


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