Openbiome, or donor FMT scheduling question.

If you have had or are considering an FMT please share your experiences here.
RMat
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Openbiome, or donor FMT scheduling question.

Postby RMat » Fri Jul 19, 2019 10:30 am

Hello friends. I'm seeking opinions from people with FMT experience. I have "severe recurrent" and was put on Vanco for the first time, as I was doing Flagyl for too long. I was put on a long Vanco taper that started last week at: 4x for 2 weeks. 2x for 2 weeks, 1x for 2 weeks and every other day for 4 weeks. This puts the end of the final pulse out to the end of Sept, however, I have an office in NY that would be willing to do an Openbiome FMT right away, cutting my Vanco short and they are ready to schedule now. I'm also trying to gain access to another nearby office that does family donor FMT's, which would will take much more work and time, including the fact that my brother is in NV and might not be able to fly out to NY, nor can I fly to him. I see that process taking months, yet I'm desperate to put this in remission ASAP without abusing Vanco. The questions below are up to me, as I'm getting mixed opinions from different doctors:

1. Do I cut my vanco short and settle with the Openbiome procedure in August?
2. Do I maintain my long extended vanco taper which runs out in September and then do the Openbiome procedure in August?
3. Do I maintain my long extended vanco taper, avoid immediate scheduling with Openbiom and spend my time exhausting every avenue to getting the donor based FMT doctor to figure out how to have my brothers stool delivered from NV to NY? This could take months risking either further recurrence, or extended time on vanco. The more time I'm on it, the more resistant to Vanco I become.

Another influencing variable is that my insurance out of pocket expense has recently been met and resets itself on Sept 1st, which is yet another factor to encourage me to cut the vanco short. But does the family donor option outweigh all other consequences? Can't do both, as I know that I will likely not be eligible for another FMT, unless I relapse (or test positive down the road). I'm seeking opinions from people with FMT experience. Thanks in advance.

beth22
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Re: Openbiome, or donor FMT scheduling question.

Postby beth22 » Fri Jul 19, 2019 2:55 pm

I have had more than one FMT and I can tell you that it was not a magic cure for me and I still had many IBS type symptoms afterwards. My first FMT was with an NG tube and that failed. The colonoscopy FMT did give me a negative c diff test, but my symptoms were horrible - not sure if from the extended vanco that I was on, the damage c diff took, the imbalance of bacteria or what. I tested highly positive for SIBO after the FMT and was treated with Xifaxan. Later, I had to take an antibiotic and the c diff came back worse than ever. FMT did not prevent that.

I never used OpenBiome because it was not around at the time of my first FMT. When I used my husband as a donor, I had terrible IBS and the SIBO after. For subsequent FMT, I used my daughter (blood relative) and I had minimal IBS symptoms after. I had read that there were some statistics that showed using a blood relative gives fewer IBS symptoms. I don't know if that is true, but in my case it was. I have also used my daughter's stool to do home stool enemas and have not had problems.

How are you feeling on the taper? It has worked for many. If you are concerned about the insurance, explain to your doctor and ask if the prescription can be refilled prior to the cut-off date. I personally, would use a relative rather than OpenBiome, but OpenBiome has a good reputation and has helped many.

RMat
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Re: Openbiome, or donor FMT scheduling question.

Postby RMat » Fri Jul 19, 2019 3:26 pm

Hello Beth22:
I'm very sorry to see that you contracted a SIBO problem after an FMT. Was the SIBO after the NG tube FMT? Because I've read that placing stool in any location above the large intestine is risky business and can in fact result in small intestine imbalances. I would also be curious as to how you were doing on Vanco before, or inbetween your FMT's. Were you stable and solid on the Vanco, then the FMT's caused issues?
Thanks in advance.
Ray

roy
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Re: Openbiome, or donor FMT scheduling question.

Postby roy » Fri Jul 19, 2019 4:25 pm

You might be better off if you wait and see if the vanco taper is effective.
If I read this correctly this is your first course of vanco and your Dr has prescribed a taper.
FMT still has many unknowns and is considered by most Drs to be a last resort.
Theres also dificid if the vanco taper fails.
A relapse and the need for treatment is only indicated by symptoms.
Some Drs AND far too many sufferers think it's a good idea to test after treatment to see if it's gone, that is wrong.
A test can be positive for a long time after a clinical cure.
I can understand the financial side but rushing into earlier treatment (FMT) to save $$ now might even result in additional costs during your next insurance period.

jG43
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Re: Openbiome, or donor FMT scheduling question.

Postby jG43 » Fri Jul 19, 2019 10:48 pm

I had a fmt via colonoscopy in March 2019 with a donor from openbiome. I trust the diligence of openbiome to deliver safe transplants. However I only went ahead with fmt after failure of a 8 week taper and pulse. I ha been on antibiotics for almost 3 months when I decided to get fmt. My GI recommended fmt after my 3rd reoccurrence which was after a taper and pulse.

jG43
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Re: Openbiome, or donor FMT scheduling question.

Postby jG43 » Fri Jul 19, 2019 11:03 pm

Sorry forgot to add that c-diff is a major infection of your gut. Whether you have success with fmt or antibiotic taper it will take time for your gut to heal. Neither method will leave you without some recovery issues. I was lucky and was able to quickly add back many foods but it still took some time for my body to heal and I still have food intolerances. When i was going through this I tried to listen to my GI and choose the least invasive method to achieve cure. It is hard to have the patience to take this kind of approach. My GI only tested for relapse and recommended fmt based on my symptoms - frequent d with blood after taper. I was fortunate that I had a mild case and recovered very quickly after fmt. I am also 45 and my GI wanted to investigate the bleeding via colonoscopy while doing the fmt. I was relieved that it was just due to inflammation from c-diff. I wish you well and hope for a quick recovery.

beth22
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Re: Openbiome, or donor FMT scheduling question.

Postby beth22 » Sat Jul 20, 2019 12:21 am

My SIBO started after the colonoscopy FMT. I did not notice it after the NG tube transfer that much, but I relapsed about 3 weeks later. In between relapses, even before FMT, I would have terrible IBS that I guess was a combination of the spores activating or maybe SIBO. The FMT via colonoscopy did place the stool high up in the terminal ileum despite having asked the doctor not to do that. Maybe that was the problem. My SIBO specialist said that it should never go into the small intestine and perhaps he is right. I'm not sure what caused it. The vanco killed a lot of good bacteria and made me feel terrible too.http

I did not do well on a taper with vanco. I relapsed when I was on one pill a day. Had first FMT after that.


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