Conflicting Infectious Disease and G.I. Doctor advice

Treatments, possible treatments, unsubstantiated/unproven treatments. Consult your doctor first.
midway
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Conflicting Infectious Disease and G.I. Doctor advice

Postby midway » Mon Oct 31, 2016 6:59 pm

I posted earlier this year. I'm still dealing with a C diff infection, and some advice could be helpful! I am a 33-year-old male, and I am a quadriplegic. The C diff symptoms first reared its head 7 months ago after a course of amoxicillin clavunate. I have since been on 2 courses of Flagyl, 2 courses of Vanco, a course of Vanco with a taper, and a 90 day course of Vanco (which I had never heard of). My infectious disease doctor recommended the lengthy treatment because all of the sources he taps into (including a C diff expert at Harvard) suggests that recurrences only happen when the treatment wasn't quite long enough to allow good flora repopulation. I am almost at the end of this 90 day course.

Of course I hope that this treatment has done the trick, but I need to have a plan in case it didn't! I just had two Doctor appointments today to help get my bearings. I met with a G.I. doctor in the state that comes from one of the top FMT groups. As expected, he suggested that I have an FMT. He claims that the infection will get more virulent with each relapse, and if the first 2-3 antibiotic treatments didn't work, then they will never work. He wouldn't even bother with waiting to see if I have a relapse. He wants me to continue antibiotics for another 4 days, and then come in for an FMT 5 days later.

Today I also revisited with my infectious disease doctor. He still would suggest waiting to see if this longer course worked. If it didn't, he recommends a longer course. Again, he asserts that the gut just needs enough time to reestablish sufficient good flora. He is also extremely wary of the newness of FMTs and doesn't like the idea of introducing someone else's biome with uncharacterized bacteria and viruses.

I'm extremely torn. On one hand, I would like to know for sure that I'm done with this forever! The FMT seems like a [relatively] certain way to eradicate it. Not to mention that it would avoid pouring more antibiotics into my body.

On the other hand, I have the same concerns about the newness of the FMT. The ID doctor's suggestion that every C diff infection just needs proper time sounds very reasonable. Also, it lets me see if this round of Vanco worked! On top of all this, preparing for a colonoscopy as a quadriplegic poses many more issues than for someone who is able-bodied. Needless to say, I'll avoid a colonoscopy if I can.

Has anyone ever heard of such a lengthy course of C diff antibiotics? Is the ID doctor crazy? He is well respected in the this area, so I would be inclined to trust his suggestion. Unfortunately, I'm stuck with two doctors who are in two very different camps.

beth22
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Re: Conflicting Infectious Disease and G.I. Doctor advice

Postby beth22 » Mon Oct 31, 2016 7:25 pm

I was on a long course of vanco because the first few courses did not work and I have to tell you that the more I took, the worse the relapses were. It did not prevent relapses, but it really seemed to have done some damage to my intestines. I wound up having to do FMT. Back in 2008 few doctors were doing them and I went to MN to have an NG transfer. Unfortunately, this did not work for me. and I had to have a colonoscopy transfer a few months later. That did get rid of the c difficile, although after so much vanco, I had terrible IBS and also SIBO. I wound up treating with Xifaxan for the SIBO.

However, the FMT is not a magic cure. I took Cirpro about 7 months after the FMT and I got c difficile again. I had to have another FMT.

For me, the FMT was a much better treatment than the long courses of vanco. I did not feel good on the vanco. I also got some hearing loss from it even though it is not supposed to do that in pill form. But, it did.

I have done some FMT enemas and they have worked well too. I do them if I have to take antibiotics because, as I said, FMT will not prevent a relapse after antibiotics in many instances. It also depends on which antibiotic to take.

If it were me and I had the chance to get off the vanco and do the FMT, that is what I would do, but as you said, doing a colonoscopy prep with being a quadriplegic is not easy. Have you spoken to the doctor who does FMT about this. Is there any way they could do this in a hospital setting for you and have someone help?

roy
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Re: Conflicting Infectious Disease and G.I. Doctor advice

Postby roy » Mon Oct 31, 2016 8:01 pm

Only an opinion
I think the GI is right.
A long course of Vanco knocks back the c.diff but also kills a lot of good gut flora so an FMT should reseed your gut with the good guys.
I assume your no stranger to colonic irrigation so ask your Dr if that's an alternative to a chemical colonoscopy prep.
Are you on a tapering regime or has it been a full dose course?
If it's a taper and you have no symptoms it might be working.
Not too sure if it's a full dose course though,
In your unusual circumstances a long tapering course of Dificid might allow some recovery of your good flora, it's claimed to be specific to clostridium species.
It's very expensive and cost might be a factor but if it's an option it might be worth trying.

georgina
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Re: Conflicting Infectious Disease and G.I. Doctor advice

Postby georgina » Tue Nov 01, 2016 1:13 am

Totally agree with Roy , is your insurance can cover a long Dificid taper and pulse you can try that , please discuss about Dificid with your doctor , it has been the magic bullet for many people and it might be your cure.

Bobbie
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Re: Conflicting Infectious Disease and G.I. Doctor advice

Postby Bobbie » Thu Nov 03, 2016 10:33 pm

Seldom do two docs - even in the same field - agree. Do what "feels" right to you,


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