New here...Cdiff twice not respoding to Vanco

[Mommy23]

First off let me just say that this site has been a lifeline for me over the last few months as I suffer with this nasty bug. I haven't been able to post until now.
I developed Cdiff in june/july of 2009, took one 10 day treatment of Vanco...didn't work tested postive 2 weeks later. Started on a month long taper of Vanco and currently on the "every 3rd day". The strange thing is that the medicine has never done much to alleviate the symptoms. Not only that, my symptoms have been very strange. I only had bad D* for a couple of days in June then it subsided and I got more constipation type symptoms, terrible gas, nausea,constant urge etc... Other days more *D symptoms. My GP said I could wait it out and retest, which I did in July with another positive and I started the Vanco(bad reaction to the Flagyl after 2 days)

Also developed terrible arthritis symptoms in the lower back and hips and a horrible pain underneath my ribs. Each day is pretty much the same pattern. Wake up with 1-2 loose stools, uncomfortable throughout the day with nausea upset stomach, sometimes 1-2 more loose stools in the afternoon. By evening bedridden with trapped gas all on the lower left side.
Let me just say constipation is just as horrible as the *D!
The vanco has hardly helped, I think it may be curbing my symptoms or allowing them not to get worse, but has not made me feel any better. The only difference was that my BM's changed to a darker color and I felt maybe 30% better for about 2 weeks.(I hope thats not too much TMI)
I know that I still have the Cdiff, my stools still have that recognizable odor, loose light in color, horrible gas etc... Over the last week things are getting worse with really loose stools and just an overall yucky feeling.


I've had a colonscopy, scope in stomach, Ct scans,MIR's. At first my GI thought it was a colitis because so much of this is on one side.
I am considering the transplant in duluth, or the home infusions since this is going on four months. I'm afraid to do it at home, but leaning towards the home infusions. For those that have done either what would you say are the biggest risks with either??I've been in touch with the Duluth clinic and spoke to a nurse who said there are not really any risks with the NG tube.
I know my GI will probably recommend another course of Vanco, but I'm not sure why I would do that if it hasn't worked twice.

Being a mom of three little ones has made this much more difficult! I am thankful that I haven't passed this onto them. I have faith that I will get through this somehow!

Sorry for the long winded post!

[Mommy23]

Thanks for your reply, Roy.
I'm currently on 125mg and tapering every third day.
I'm also taking a ton of probiotics; floraster, VSL#3, Floragen. None of which seems to be helping. I'm eating yogurt and even making my own Kefir with real grains. I might be over doing it because I realize these can cause problems with some. I've tried diet change, no sugar, dairy, little red meat etc...Still nothing makes a difference.

My first GI said that I had post IBS, after the 1st treatment and testing negative several times, two weeks later I produced a positive. I knew all along that I still had the nasty bug, even though everyone kept saying its negative. I was just testing too soon after the antibiotics. I've switched Dr since I felt a second opinion was needed. I am suppose to see him after this dose is finished in two weeks. I am very concerned about the pain I experience since it is all left side, which can be felt all day. I can't even sleep on that side. I honestly feel like my colon is swollen!

[Suezer]

It is very possible you were not given enough or high enough doses in the start of your taper.
I took 250 mg 3X a day for 2 weeks, then 2 times a day for 2 weeks, then 1 time a day for two weeks. Then I began the pulse regimen which I am currently still doing-1 pill now every 3rd day(250mg) Did 1 pill every other day for some weeks prior.

Also I can tell you that after my 3rd occurence (2nd relapse) my whole torso/colon was very tender and painful, I walked in half steps for some months due to that..it took until last month,which was 6 months into treatment to stop having pain(s) as well as lower back ache.

The damage done by this bug is tremendous and the healing takes so very long.

[Vikingjeff28]

Have you tried Xifaxin taper yet? I am on second week of 6 week taper(have had C diff 3 times, Flagyl and Vanco previous) and my symptoms have disappeared. I feel like I don't even have it now. First two times, 30 days in hospital, colitis, the works.

[beth22]

I had symptoms very similar to yours when I first tested positive for c diff. A lot of nausea, mucus, blood etc. - but not the D that everyone talks about. That didn't happen until this last relapse after I had taken AB again. The vanco seemed to make some things worse for me and probiotics also gave me a LOT of gas and made me feel worse in the beginning. You may try to stop the probiotics for a day and then add one at a time to see if any of them do not agree with you. I went to Duluth for the stool transfer after trying a vanco taper which did not work - although I only got to one pill a day before relapsing. The procedure did not work for me and I relapsed again, but I did not have any side effects from it. A few months later I had another stool transfer via colonoscopy this time, and the c diff did not test positive for 7 months. However, I had the worst IBS symptoms during this time - lost a lot of weight, got many food intolerances. I kept thinking that the c diff was still there, and maybe it was, but after a lot of tests the only thing that showed up was SIBO on a breath test. It was an extremely high score - went off the charts, indicating a bacterial overgrowth of the small intestine. It could have been partly from the stool transfer, but my guess and some of the doctors opinions are that the vanco, while killing c diff, also kills a lot of good bacteria and allows others to overgrow and in my case resulted in the small intestinal overgrowth, which was way worse than the c difficile ever was, even during the last relapse.

In June I took Cipro and relapsed afterwards with the classic horrific D and wound up in ER. This time I took vanco only for 3 weeks, and tapered it during this time 4x250 for 9 days, 3 x 250 for 8 days, 2 x w250 for 5 days and then took Xifaxan for 8 days, also tapering it. The Xifaxan made me feel much better than the vanco. I have been off all medication for 6 weeks now and while it is too early to tell if I will relapse, I feel the Xifaxan helped me more than the vanco ever did without the colon pains, which it gave me.

To do your procedure in Duluth you have to take vanco full dose for at least 4 days I think. You might ask your doctor about trying the Xifaxan first as a taper as Jeff suggested. I know when I relapsed after the procedure there, the doctor in Duluth suggested that anyway.

Good luck

[Suezer]

Another thing I forgot to mention is the fact that early on, before my colon began to heal I had a hard time with Florastor and only could tolerate a lesser version of it. I could not even tolerate acidophilus pills until just last week. I have been at this since January.

So to reduce the Probiotics may be a good advise, also talk to your Dr. about your dosing. It may require higher dosing to get rid of any remaining of the original C Diff and toxins as well. The taper/pulse works best once that is achieved,as its purpose is mainly to keep the C Diff"down" while your natural flora regrows,also to kill any C Diff that may emerge from remaining spores.

I wish you the best of luck and a quicker resolution of your symptoms.

[Nancy1]

Mommy23,
Here is the official welcome: Welcome to the group that no one wants to join. It sounds like you have done a lot of reading already, but be sure to read All Users Read This First, Dr. Borody's article, Dr. McDonald's article (in the FAQ section under Articles by Experts), and all areas in FAQ that interest you.

You have gotten lots of good advice. Folks here are great! Let us know how it goes. Good luck.

[Mommy23]

Thanks to all who have responded. I don't feel so alone!!(not that I would wish this on anyone)

I spoke to my 1st GI's PA about the SIBO months ago, he was actually going to give me the Xifaxan, but I felt uncomfortable without doing any kind of testing. I felt like he was just giving it to me because I asked.
I will try to reduce the probiotics and see if that helps. I've done much reading and research about treatment options.

Beth, I read many of your posts and felt like we have/had similar symptoms. I could relate to everything you described. Regarding the transfer, why do you think it didn't work? From what you are saying things got worse after? That is my fear....since my symptoms are so different from many other I fear the procedure may create more problems.

I'm so sorry to hear that all of you have been suffering from this for so long.
I appreciate the support and pray we all get well soon.

[beth22]

I got worse after the transfer with the colonoscopy, not with the ng tube. I had no ill effects from the transfer with the ng tube. With a colonoscopy I had to do the regular prep for that, which is very harsh. Also, the doctor put the donor stool into the last part of my small intestine, not only the colon and I don't think that bacteria belongs there. He had me take Imodium and I didn't have a bm for 4 days, so that means that the bacteria that was put into the small intestine sat there for a long time. With the ng tube, it doesn't affect your normal motility. With SIBO you don't want to have even good bacteria linger in the small intestine for too long - so that is why people with SIBO often don't take high doses of probiotics. In the beginning, probiotics made me worse. Now I tolerate small doses. Before this last relapse the Xifaxan did help me. I tried it first without having taken probiotics and could only tolerate it for 3 days, but then I took probiotics for a few weeks and took the Xifaxan for 10 days and my symptoms improved, but did not go away. That is when I decided to go back to Duluth. Unfortunately, I took Cipro before having the transfer there and I was in the middle of the relapse when I got the infusion. I lasted two weeks after the infusion before getting a major relape. However, even though it was the worst ever, now that I have been off the vanco and the Xifaxan for over 6 weeks, some of the SIBO symptoms are better, so I don't know if it was the combination or what that helped. I would not hesitate to do the ng transfer in Duluth. It may not work, but I don't think it would make you worse. Good luck.

[beth22]

I re-read my post, but I don't see it as advice. If I had to do it again, I would do the ng tube. I just would not have taken Cipro before it. It didn't hurt me the first time and I don't see a problem with it as the donor is screened. Before you can get a stool transfer your own doctor has to recommend you usually and the doctor who does the infusion screens the patient to see if they qualify - so just by contacting someone who does this is no guarantee that it will happen. It will be up to the doctor. Then you have to have a donor tested with blood and stool tests and if those are ok, then there is medication to take. If you are thinking of doing this, I would discuss your fears with the doctor and see what the doctor says. If you contact the clinic directly, share the fears with the doctor as well.

The same goes for the Xifaxan. I can't prescribe medication to anyone obviously, but it is something you can ask your doctor about too. Is that better, Roy?

[Mommy23]

Thanks Beth I appreciate your knowledge about this. I've already done much research and reading and do hope that I'll be able to beat this without the transplant but need to keep my options open. I'm just worried that Vanco has not worked at all. I was/am a healthy young mom before all this as I'm sure most of us were.
Has anyone attempted the infusions at home? If so how successful were you?

[beth22]

Kathy George has done it at home successfully. You can pm her to get the protocol.