I'm a 27-year-old otherwise healthy male who lives in New York City. I developed a C Diff infection on Jan. 3, 2006 on the second to last day of a course of Augmentin for a prolonged sinus infection. I had taken Augmentin at least once before in my life without issue.
My PCP immediately suspected C Diff based on my symptoms (profuse, watery diarrhea and a low grade fever) and I was put on flagyl 250mg QID for 10 days while a stool test was processed (it came back positive). Symptoms resolved within 48 hours, but a week after finishing that course, the symptoms returned.
I went to a GI at Beth Israel Medical Center in NYC and he put me on flagyl 500mg TID for 14 days. On the third day of that course, I started vomiting and couldn't stop, and ended up in the ER. 10 hours later, I was finally able to keep liquid and food down again and had not taken any flagyl since, so they assumed it was a reaction to the medication (diarrhea also returned later that day, as did a low grade fever).
The GI called in vancomycin and I started a 125mg QID course for 10 days the night after I got home from the hospital. Again, the symptoms resolved within 48 hours, although white mucus began to show up around the increasingly bright orange stool by one week in. 4 days after finishing that course, the symptoms came back, and I tested positive in a stool test once again.
I then had a colonoscopy, which showed "mild distal colitis." My ALT and AST liver enzymes were also elevated according to blood tests done right before the procedure (subsequent testing for hepatitis and anything else has been negative, thankfully; they assume it's related to the C Diff now). An abdominal CT scan showed nothing unusual.
After the colonoscopy, back on the vanco I went, this time at 250mg QID for two weeks, then 125mg QID for two weeks, and now I am trying to taper off by doing 125 QID every other day for 10 days, then once every three days. But I'm three days into this pulse/taper and already the white mucus around the (solid) stool has returned, as has increased abdominal pain. Will keep posting.
Have also consulted with a reputable naturopath, who has me taking 3g of glutamine BID and a natural herbal antibiotic QID (yarrow root, wormwood, goldenseal). Supplemental only -- there are no illusions this will cure me.
I've lost 10 pounds and have very little energy. I work as a newspaper reporter and it's interfered with my work life greatly. I've missed 6 days of work in the last two months -- after never having missed a day prior. My girlfriend of four months ended things recently, I think in part because she got tired of dating an invalid who is afraid to have so much as a beer these days (I haven't drank since once after the course of flagyl, back in mid January). I've started on Lexapro as well to control my anxiety over this awful thing; for a while, I would burst into tears every time I passed a troublesome stool.
I find it difficult, if not impossible, to maintain a positive outlook on beating this -- I simply don't think it's going to go away anytime soon. The GI seems incredulous and is confident it will resolve itself this time around. Yeah, right.
Julian's case history
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jskvt
- Regular User
- Posts: 34
- Joined: Wed Mar 22, 2006 3:39 pm
A week into trying to taper off the vanco -- was doing 125mg QID every other day at this point, after a month of taking it daily at 250 and then 125, two weeks each -- I had one tiny episode of diarrhea, which I saved.... and it tested positive for C diff yet again. That was the only loose stool I had, but it showed I still have it. The abdminal pain still comes and goes, but it was worst on the day I passed that one loose stool.
This also shows that at least at this one hospital in New York, I've now tested positive for C Diff while on vanco TWICE. This means that at least some C Diff testing methods may be more sensitive than some users on this site are led to believe, in my personal opinion. I am proof that you do NOT need to wait X number of days off Vanco in order to test positive again, it's happened twice now.
My doctor now wants me to take vanco 500mg once daily every other day, and questran three times daily on the alternating days.
As smart and knowledgeable as my GI is, I am going to go see a GI at Columbia University for a second opinion, just to be safe.
The beat goes on.
This also shows that at least at this one hospital in New York, I've now tested positive for C Diff while on vanco TWICE. This means that at least some C Diff testing methods may be more sensitive than some users on this site are led to believe, in my personal opinion. I am proof that you do NOT need to wait X number of days off Vanco in order to test positive again, it's happened twice now.
My doctor now wants me to take vanco 500mg once daily every other day, and questran three times daily on the alternating days.
As smart and knowledgeable as my GI is, I am going to go see a GI at Columbia University for a second opinion, just to be safe.
The beat goes on.
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jskvt
- Regular User
- Posts: 34
- Joined: Wed Mar 22, 2006 3:39 pm
The once a day, every other day course of 500mg vanco, alternating with questran, did not work. The abdominal pain gradually came back, and after a couple loose stools (which tested negative, incidentally), my GI decided to try something else.
Thank goodness my GI is smart and resourceful and willing to think outside the box. Without me ever bringing her name up, he called Dr. Surawicz in Washington and discussed my treatment plan with her. She referred him to an article of hers that ran in Nature in 2004, on treating recurrent CDAD cases.
So we're trying her plan now, which essentially is 2g vanco daily (500mg x4 doses) for 10 days, then every other day for a week, then every third day for about a week, etc. until I'm down to 2g vanco every tenth day, at which point we'd stop. I'm also taking two florastor and one culturelle between the vanco doses.
I've felt pretty much normal for the six days I've been on this. I feel like I'm close to beating this thing. I guess we'll see if this works. If it doesn't, my GI says he is willing to do a fecal infusion - apparently a couple of his colleagues at Beth Israel in NYC have done them and he said Dr. Surawicz was willing to instruct him on how to do so over the phone. The chief of GI is on board with all of the above as well.
Something WILL work, I'm sure of it - just not sure what it will be. At the very least, it's encouraging to have such an excellent doctor who is willing to explore as many options as possible. I've yet to make it to another GI and at this point I don't think it's really necessary or worth the time, as this guy is really on the ball.
More to come.
Thank goodness my GI is smart and resourceful and willing to think outside the box. Without me ever bringing her name up, he called Dr. Surawicz in Washington and discussed my treatment plan with her. She referred him to an article of hers that ran in Nature in 2004, on treating recurrent CDAD cases.
So we're trying her plan now, which essentially is 2g vanco daily (500mg x4 doses) for 10 days, then every other day for a week, then every third day for about a week, etc. until I'm down to 2g vanco every tenth day, at which point we'd stop. I'm also taking two florastor and one culturelle between the vanco doses.
I've felt pretty much normal for the six days I've been on this. I feel like I'm close to beating this thing. I guess we'll see if this works. If it doesn't, my GI says he is willing to do a fecal infusion - apparently a couple of his colleagues at Beth Israel in NYC have done them and he said Dr. Surawicz was willing to instruct him on how to do so over the phone. The chief of GI is on board with all of the above as well.
Something WILL work, I'm sure of it - just not sure what it will be. At the very least, it's encouraging to have such an excellent doctor who is willing to explore as many options as possible. I've yet to make it to another GI and at this point I don't think it's really necessary or worth the time, as this guy is really on the ball.
More to come.
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jskvt
- Regular User
- Posts: 34
- Joined: Wed Mar 22, 2006 3:39 pm
So back when I said I felt like I was "close to beating this thing?" Ah, such wishful thinking.
I had taken 10days worth of 500mg vanco QID, then gone to every other day of that dose for a week (but still doing 1 culturelle/2 florastor daily regardless), then a week at once every three days, then a week at once every four days, then...
I relapsed.
Yesterday would have been my fifth day off the vanco but instead I had about a dozen loose BMs, mucus, blood, blah blah blah you all know the drill.
At least this time I knew full well what was going on before it got REALLY bad, and so I hopped back in the ol' vanco saddle tout suite. Went and saw my GI today and we both cursed my intestine a lot and decided to go back to 500mg QID every other day and start the taper over.
That said, realistically I don't think it's going to work, and neither does my GI. If this fails, we agreed to concretely discuss the fecal infusion and get started on lining up a donor, etc. - he's never done one but Dr. Surawicz in Seattle has said she'll instruct him on how to do it, apparently it's actually quite simple. I've raved about him before, but again, so nice to have a doc thinking outside the box on fixing this thing and not just eternally keeping me on pills.
I had taken 10days worth of 500mg vanco QID, then gone to every other day of that dose for a week (but still doing 1 culturelle/2 florastor daily regardless), then a week at once every three days, then a week at once every four days, then...
I relapsed.
Yesterday would have been my fifth day off the vanco but instead I had about a dozen loose BMs, mucus, blood, blah blah blah you all know the drill.
At least this time I knew full well what was going on before it got REALLY bad, and so I hopped back in the ol' vanco saddle tout suite. Went and saw my GI today and we both cursed my intestine a lot and decided to go back to 500mg QID every other day and start the taper over.
That said, realistically I don't think it's going to work, and neither does my GI. If this fails, we agreed to concretely discuss the fecal infusion and get started on lining up a donor, etc. - he's never done one but Dr. Surawicz in Seattle has said she'll instruct him on how to do it, apparently it's actually quite simple. I've raved about him before, but again, so nice to have a doc thinking outside the box on fixing this thing and not just eternally keeping me on pills.
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jskvt
- Regular User
- Posts: 34
- Joined: Wed Mar 22, 2006 3:39 pm
It's been many months since I last posted here, but that doesn't mean I've been avoiding the site -- far from it, actually. I'm still most happy that the moderators started the "Success Stories" section from the main menu; I frequently check it for new inspiration, and I'm always thrilled to hear when other folks, especially long-time site visitors, are able to kick C Diff for good.
Long story short, I've been pulsing Vanco for six months and now I am going to try to go off it again. Since about June of 2006, I have been taking 500mg Vanco QID (2g daily) -- three days on, two days off for a while, then three days off and two on, etc. I had one or two "bad days" when I tried going to five days off a couple times, but otherwise, I've actually been doing just fine and getting on with life and forgetting I even have this thing.
But I'm tired of taking Vanco, and obviously this can't continue into eternity, so I consulted with my doctor, Dr. David Robbins of Beth Israel in Manhattan, as well as two other GI experts in New York, and here is the current plan of attack:
1. Try to wean off the Vanco using a long taper. One GI whom I spoke with, who has done lots of clinical studies himself using probiotics in the past, suggested cutting one Vanco pill out every week or so, all while concurrently taking one Florastor and one Culturelle TID -- i.e., drop about 250mg of Vanco every week while keeping a high level of probiotics. He said in his research, he found that these probiotics (which I know you're all too familiar with by now) seem to latch on and/or replace the C Diff spores on the intestinal wall. This GI is NOT a quack -- far from it, actually... he's considered one of the best MDs in New York City. I do not have permission to use his name here, though, at present.
2. If this fails and a positive C Diff culture shows up again -- and this is an absolute necessity for them at this point, for better or for worse -- than I am going to try the Rifaximin chaser, at Dr. Robbins' request. I'm mentally ready to deal with the symptoms again for a week or so if need to be until a positive C Diff test comes back. The Beth Israel lab has been sensitive at detecting it thus far.
3. If that also fails and yet another positive culture comes back, I'll take a last-ditch course of Alinia. I don't think anyone is deceived that this will do anything, but it's necessary to a third GI I've consulted with.
Which brings me to the the bad news: Dr. Robbins changed his mind about ever doing a stool transplant. He said there would just be too many bureaucratic issues with the hospital, despite his own personal willingness to do the procedure.
4. And now, the good news: this third GI in New York HAS done 4 stool transplants in the past (all 4 have been successful), and told me he'd be willing to do one on me if necessary. But he insists I try Rifaximin and Alinia first (fine by me). He wanted me to try Rifampin too but I talked him out of that, as after my reaction to Flagyl, a powerful systemic antibiotic with no clinically proven efficacy against C Diff sounds, uh, not appealing. (And no, Rifampin is not the same thing as Rifaximin, as previously established on this bulletin board). My girlfriend is on board as a donor if it all comes to this.
I have not asked this third GI if I can mention his name. He told me he is very reluctant to do stool transplants, hence why he has only done four of them, in what he calls last-ditch situations, so I did not ask him. This third GI practices in New York City and according to my doctor and the second GI I consulted with, might just be the best gastroenterologist in the city, if not the country. If I am ever able to post his name, I will by all means... I imagine a little Google work would also turn him up. Because I cover health for a New York newspaper, I simply do not feel comfortable posting these doctors' names on this site unless they give me permission to do so.
So... as of today, I am down to taking one 250mg Vanco pill a day, plus the probiotics TID. Early next week, I'll go off the Vanco entirely, keep up the probiotic doses... and see what happens. When I have more news to report, I'll post again.
One word of advice to anyone reading this: Make a plan of attack like this one in advance. I'm not saying, do exactly what I'm doing; what I'm saying is it can take a huge weight off your mind knowing that if the C Diff does come back, your doctor and you already have a "Plan B" (and, perhaps, a Plan C and D) in mind and ready to try. It sure beats trying to devise a next step while you're diarrhea and fever are back... and it also will give you a better idea how qualified your doctor is to be addressing this problem for you.
That said -- I really think I can get rid of this bug without having to resort to a stool transplant. I guess I will find out soon enough.
I hope everyone reading this site gets well soon.
Long story short, I've been pulsing Vanco for six months and now I am going to try to go off it again. Since about June of 2006, I have been taking 500mg Vanco QID (2g daily) -- three days on, two days off for a while, then three days off and two on, etc. I had one or two "bad days" when I tried going to five days off a couple times, but otherwise, I've actually been doing just fine and getting on with life and forgetting I even have this thing.
But I'm tired of taking Vanco, and obviously this can't continue into eternity, so I consulted with my doctor, Dr. David Robbins of Beth Israel in Manhattan, as well as two other GI experts in New York, and here is the current plan of attack:
1. Try to wean off the Vanco using a long taper. One GI whom I spoke with, who has done lots of clinical studies himself using probiotics in the past, suggested cutting one Vanco pill out every week or so, all while concurrently taking one Florastor and one Culturelle TID -- i.e., drop about 250mg of Vanco every week while keeping a high level of probiotics. He said in his research, he found that these probiotics (which I know you're all too familiar with by now) seem to latch on and/or replace the C Diff spores on the intestinal wall. This GI is NOT a quack -- far from it, actually... he's considered one of the best MDs in New York City. I do not have permission to use his name here, though, at present.
2. If this fails and a positive C Diff culture shows up again -- and this is an absolute necessity for them at this point, for better or for worse -- than I am going to try the Rifaximin chaser, at Dr. Robbins' request. I'm mentally ready to deal with the symptoms again for a week or so if need to be until a positive C Diff test comes back. The Beth Israel lab has been sensitive at detecting it thus far.
3. If that also fails and yet another positive culture comes back, I'll take a last-ditch course of Alinia. I don't think anyone is deceived that this will do anything, but it's necessary to a third GI I've consulted with.
Which brings me to the the bad news: Dr. Robbins changed his mind about ever doing a stool transplant. He said there would just be too many bureaucratic issues with the hospital, despite his own personal willingness to do the procedure.
4. And now, the good news: this third GI in New York HAS done 4 stool transplants in the past (all 4 have been successful), and told me he'd be willing to do one on me if necessary. But he insists I try Rifaximin and Alinia first (fine by me). He wanted me to try Rifampin too but I talked him out of that, as after my reaction to Flagyl, a powerful systemic antibiotic with no clinically proven efficacy against C Diff sounds, uh, not appealing. (And no, Rifampin is not the same thing as Rifaximin, as previously established on this bulletin board). My girlfriend is on board as a donor if it all comes to this.
I have not asked this third GI if I can mention his name. He told me he is very reluctant to do stool transplants, hence why he has only done four of them, in what he calls last-ditch situations, so I did not ask him. This third GI practices in New York City and according to my doctor and the second GI I consulted with, might just be the best gastroenterologist in the city, if not the country. If I am ever able to post his name, I will by all means... I imagine a little Google work would also turn him up. Because I cover health for a New York newspaper, I simply do not feel comfortable posting these doctors' names on this site unless they give me permission to do so.
So... as of today, I am down to taking one 250mg Vanco pill a day, plus the probiotics TID. Early next week, I'll go off the Vanco entirely, keep up the probiotic doses... and see what happens. When I have more news to report, I'll post again.
One word of advice to anyone reading this: Make a plan of attack like this one in advance. I'm not saying, do exactly what I'm doing; what I'm saying is it can take a huge weight off your mind knowing that if the C Diff does come back, your doctor and you already have a "Plan B" (and, perhaps, a Plan C and D) in mind and ready to try. It sure beats trying to devise a next step while you're diarrhea and fever are back... and it also will give you a better idea how qualified your doctor is to be addressing this problem for you.
That said -- I really think I can get rid of this bug without having to resort to a stool transplant. I guess I will find out soon enough.
I hope everyone reading this site gets well soon.
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jskvt
- Regular User
- Posts: 34
- Joined: Wed Mar 22, 2006 3:39 pm
It's gone.
After 14 months and countless pills and worrying if it was going to come back -- it hasn't. It gave up.
Who knows at what point it did. It could have been the many months of pulsing vanco that worked. Or it could have been the tapering regimen I did at the very end, taking florastor and culturelle TID while I ever so slowly ended the vanco. I hadn't had a stool test in the months of pulsing, so it's hard to know.
But as a lot of people on this site have found out, one day it just simply goes away, and there really isn't that good an explanation as to why.
I had gotten down to 125mg daily only for 10 days straight, still taking the probiotics, and things were still "solid," so I began to get confident. But after finishing the last of the vanco, I got unbelievably nervous, especially when on day four after finishing the vanco, I had severe stomach cramps and about 6 bowel movements in 4 hours, mucus, cramping, etc. I thought for sure it was coming back.
But then the next morning, everything was fine again. And the next day. A couple weeks later, I had another bad day with frightening symptoms, but things returned to normal right away. And now I've been off the vanco seven weeks and everything is fine. I am thrilled, to say the least, that I am no longer taking any prescription meds, and that I won't have to try Rifaximin, Alinia or convince anyone to be a stool donor.
Things are hardly 100%, and there's passing mild IBS symptoms. But believe me, I'm not complaining. I have weaned down to just one florastor and one culturelle a day. I'll finish off what I have of those, and that will be it. I am now 100% confident it's not coming back -- at least, not until I next need an antibiotic. Then, I guess we'll just see what happens.
I still hope to write about this; I'm still reporting for a newspaper, though I don't know if they'd let me do a piece on C Diff or not. I'll let everyone know what happens.
People are welcome to message me with questions anytime, especially about New York City doctors. I don't know what else to say at this point, other than that I hope everyone else on here finds a way to get better soon.
After 14 months and countless pills and worrying if it was going to come back -- it hasn't. It gave up.
Who knows at what point it did. It could have been the many months of pulsing vanco that worked. Or it could have been the tapering regimen I did at the very end, taking florastor and culturelle TID while I ever so slowly ended the vanco. I hadn't had a stool test in the months of pulsing, so it's hard to know.
But as a lot of people on this site have found out, one day it just simply goes away, and there really isn't that good an explanation as to why.
I had gotten down to 125mg daily only for 10 days straight, still taking the probiotics, and things were still "solid," so I began to get confident. But after finishing the last of the vanco, I got unbelievably nervous, especially when on day four after finishing the vanco, I had severe stomach cramps and about 6 bowel movements in 4 hours, mucus, cramping, etc. I thought for sure it was coming back.
But then the next morning, everything was fine again. And the next day. A couple weeks later, I had another bad day with frightening symptoms, but things returned to normal right away. And now I've been off the vanco seven weeks and everything is fine. I am thrilled, to say the least, that I am no longer taking any prescription meds, and that I won't have to try Rifaximin, Alinia or convince anyone to be a stool donor.
Things are hardly 100%, and there's passing mild IBS symptoms. But believe me, I'm not complaining. I have weaned down to just one florastor and one culturelle a day. I'll finish off what I have of those, and that will be it. I am now 100% confident it's not coming back -- at least, not until I next need an antibiotic. Then, I guess we'll just see what happens.
I still hope to write about this; I'm still reporting for a newspaper, though I don't know if they'd let me do a piece on C Diff or not. I'll let everyone know what happens.
People are welcome to message me with questions anytime, especially about New York City doctors. I don't know what else to say at this point, other than that I hope everyone else on here finds a way to get better soon.
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