relapse while on vanco?

Postby **beth22** » Sat Jul 04, 2009 12:28 am

I'm going to need everyone's good wishes and prayers. No one knows yet whether I am having a relapse and I'm not tolerating the vanco for some reason. This time it's giving me stomach ache, gas and more D* more often. One doctor says it isn't c diff because this week I had 3 samples tested on different days for the toxin and they were all negative. Doctor says that 3 false negatives is unlikely and that the toxin will show in spite of being on vanco. Another doctor disagrees. So, today I didn't take any vanco and I do feel better, but I have to take some tonight and for two more days, even if it is only a 250 mg pill. Can't believe this is all happening. Had I not taken the Cipro I wouldn't be wondering if this is a relapse, but I didn't want to do my transplant and then come back and have to take ABs. It' s like no matter what I try there's always a problem with it. I was able to tolerate vanco fairly well for 7 months last year - don't know why now all of a sudden! Hope the procedure works - I don't think they will be willing to do it a 3rd time. Needless to say I am just a little bit stressed!

Postby **Bobbie** » Sat Jul 04, 2009 3:08 am

beth,
If you were on Vanco. when you were tested, it could negate the results.
Ask your doc. about it. You should be off it for several days (2-4) before testing. Doublecheck with your pharmacist to see how long it stays in your body.

You sound as though you have my kind of luck. "If it weren't for bad luck, I wouldn't have 'no' luck.'" (Think it's from a country song.)

Good luck. You have our best wishes and prayers.

Postby **beth22** » Sat Jul 04, 2009 3:19 am

Thanks for the good wishes Bobbie. I thought it could be a false negative too, but I asked two different doctors - my internist and GI and they both said that the toxin would show up at least in one of the tests because the vanco doesn't kill the toxin, only the bacteria. But, I still wonder..... nevertheless, I have to take some every day as that is the protocol for the procedure. I felt much better all day without it though. Doc said I should take at least one 250 a day or two 125s. Will be glad when this is over. My intestines must be pulverized by now to be so sensitive to just about anything. Can't even take vitamins or allergy meds!

Postby **Vikingjeff28** » Sat Jul 04, 2009 7:57 am

I KNOW it is terrible. I went thru it for four months. Could not eat or drink anything without feeling like my guts were coming out. Lived with heating pad. It slowly got better over time, went gluten free for a while, it helped. I got tested a couple of times because I thought it had to be back the way I was feeling, all negative. I pray for you with passion because I know how bad it is.

Postby **anlockwood** » Sat Jul 04, 2009 9:40 am

Beth I am so sorry you are still having a hard time. I continue to pray that you are going to get relief from all of this especially after the transplant. This may sound weird, but I really get the feeling things will turn around for you then. I pray you have a nice 4th of July that you can at least be able to enjoy. Hopefully you are able to see some fireworks!
Amanda

Postby **beth22** » Sat Jul 04, 2009 11:18 am

Thanks, Amanda and Jeff. Took my meds last night before bed and can feel it this morning. Decided to do it at night, as then I don't have to ruin my day as much. I think the Xifaxan I took a month ago and had such a bad reaction to was most likely what got my intestines so inflamed or at least made is worse. It was a really harsh medicine to take.

So, I'll pack up my pills and am planning on going to a baseball game this evening followed by fireworks. Wishing everyone a great 4th of July too.

Beth

Postby **Vikingjeff28** » Sat Jul 04, 2009 1:30 pm

We are doing the same thing for the 4th, baseball game and fireworks. Lakeland has class A team of the Tigers here, good fun.

Postby **beth22** » Sun Jul 05, 2009 3:59 am

Have you ever heard of Babe Ruth, Roy? It's the game that he played as well as Jackie Robinson. Kind of the traditional all-American ball game - so 4th of July is a good time to go. Teams like the NY Yankees, Mets, LA Dodgers, Mariners, etc. are some of the teams. You're supposed to hit the ball with a bat and run around a square basically while the other team tries to get the player out - often slow to watch, but today's game was good 11-6 - home team won - lots of good fireworks after.

Getting back on topic - tomorrow I leave for my transplant. Will post to let you all know how it goes. Keeping my fingers crossed and continuing the prayers. Hope it works.

Beth

trob25 · Postby **trob25** » Sun Jul 05, 2009 6:27 pm

roy wrote:Oh a bit like cricket but slower?

Ok you joker, I'd say a bit like cricket but far more entertaining lol ;)

Postby **Bobbie** » Mon Jul 06, 2009 3:40 pm

Beth,
I haven't read much of the recent literature on C. diff. testing as the site is low on my priority list now -- too many other problems.

When I went to Mayo in l993, however, I was on Vanco. - per my local GI's instructions. I tested negative for everything -- believe they tested for toxins then but tests were probably not as sophisticated -- even the dreaded "scope." Doctor (jerky resident) was insulting -- said everthing was "normal, I was over-reacting, I had IBS." (I have it now but didn't then.) Per instructions, I went off Vanco., tested positive (one of two or three times in 4 years I had a positive). Sent him a letter -- special delivery, return receipt requested. He called me and apologized.

Good luck. Don't give up something will eventually work.

Postby **beth22** » Mon Jul 06, 2009 11:55 pm

I am ready to give up. Had the infusion today - flew back home only to have D* again after not having it for a few days. Don't know if the prilosec I took last night and this morning is responsible. I say it was a relapse and in spite of the tests and sigmoidoscopy it went unrecognized and I didn't take enough vanco to beat it. I don't know if the infusion works on active c diff. I think not. Don't know what else is left to do. Will talk to the doctor tomorrow.

Beth

Postby **anlockwood** » Tue Jul 07, 2009 10:37 am

I am so sorry Beth. I really hope you start feeling better today. It seems like many people really start to turn around a day or two after the infusion. I am praying for you and really hope the transfusion was the answer and today will be better!
Amanda

Postby **beth22** » Tue Jul 07, 2009 1:26 pm

I hope you're right Amanda. The day is still young - I'm out on the west coast. Took in a sample today - 1 1/2 days off vanco - don't know if it will show anything. I suppose I have to wait a couple more days. I'm totally fed up and depressed. I don't think I can go back to work like this or even live a halfway normal life anymore. I always thought that the infusion would work - Just sorry that I took the Cipro, but the day would have come when I needed ABs anyway, so I would have faced the same thing sooner or later I guess. Thanks for the support.

Beth

trob25 · Postby **trob25** » Tue Jul 07, 2009 2:18 pm

Some people who have had it done said it took a few days to kick in (did someone even see like 5 days once?), so don't give up all hope yet.

Postby **beth22** » Tue Jul 07, 2009 3:13 pm

I think the infusions that are enemas take a few days, but the NG tube I think should work pretty quick and this doesn't seem to have. I don't know of many people who have had it done this way, but the two I do know said it worked right away. All I can do is wait and hope.

relapse while on vanco?

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