Confirmed C diff is back

[Vikingjeff28]

Test positive, started 6 week taper of Xifaxin(he likes equal with Vanco) with Floraster and Colestid. i will NOT let this thing run my life. I am eating and determined to keep working out!

[anlockwood]

I am so so sorry to hear that! I will continue to pray for you that you beat this and can get back to life as it was. Did the dr have any reason why you would relapse so far out? Seems like this is really rare and makes you wonder what would trigger it. I hope you do well and its a good thing you caught it so early on.

Amanda

[Vikingjeff28]

He was stumped but said if one spore survives the first few treatments that is all it takes. He thought all the ptobiotics I took would have helped. He said test at end of 6 weeks and if it comes back after that he wants to work jointly with Infectious Disease Doc.

[anlockwood]

That is pretty shocking after 10 months of recovery. Maybe an ID doc would be best just so they can review and make sure there is no other reason you relapsed so far out. It is just so rare. I am so sorry you have to face this again but it sounds like you are going to with great courage!! Good for you!! Keep us all updated on how you do!

Amanda

[Suezer]

Well I am sorry to hear that it is back for you.
I think it is not as rare as all would like to think (relapsing after many months without taking Antibiotics)

Another rather new poster in similar situation:
http://www.cdiffsupport.com/phpBB/viewtopic.php?t=6928

Would be nice if they get busy with the vaccine.
Good luck Vikingjeff, keep the positive attitude.

[Vikingjeff28]

You know, I could feel that old familiar ache in gut come back about a week ago and hoped it was not it. When mucus showed up I knew it. It is just so bizarre that you do everything right and it hits anyway. The good part is after such a horrific adventure the first two times I am kind of hardened by it now so it was not a big shock and that fear factor is gone for the time being. Life is what happens while we are making plans....

[beth22]

I too am so sorry to hear this. My relapse was after 8 months, but I did take antibiotics again. Xifaxan helped me more than the vanco though. I took vanco and it did not relieve the symptoms as well as when I took the Xifaxan after. At least this time you caught it at the start and hopefully that will make a difference. I will keep you in my prayers as well.

Beth

[Mia-Mia]

Hey you know everytime i Swear i had it. is it possible that it is a false positive. i understand you have d But sometimes its just because of something we ate or something? did you have d for more than 3 days?
i am sure you know but just thought maybe get tested again?

[Bobbie]

Vikingjeff28,
A few posters on this site tested positive but did not have full-blown symptoms so their docs. elected not to treat. They eventually tested negative.

One poster's name was Amy -- a young woman who developed C. diff. after childbirth. Believe she and her daughter tested positive for quite awhile but am not sure -- too many years, too many posters. She posts under the name dalamy. She lists an Email or you can contact her by PM if she still checks the site. Use "search" and read her posts.

A poster named MaryT also had a relapse after a lengthy time. She, too, hasn't posted in a long time, but you might do a search of the membership list to try and contact her. She had a strange case -- no antibiotics were involved. Her doc. thought she had several different problems; I think celiac disease was one of them.

In my non-medical opinion, it is rare to have C. diff. return after so long a period. I always felt "safe" after two months -- had C. diff. twice; first time for 4 yrs. This, too, is rare.

Am glad you are trying to live a "normal" life including exercising. I did, too. It didn't help "cure" me, but it made the waiting more bearable.

Best of luck.

[Vikingjeff28]

I wish it was false but all the mucus and pain, identical to first two times. I think I caught it much earlier this time so hopefully it won't get to where it did first time. Yes, I have had D for more than a week or so on and off. Went to the gym this morning though!

[trob25]

Jeff, I am so sorry to hear about this, I would agree that it is indeed rare for this to come back after 10 months without antibiotics! While we have a few cases of that happening on here, it is definitely rare and I wonder if something else isn't at play?

Have you ever had a colonoscopy to check for Crohns, UC or anything like that? How about checks for Celiac or SIBO? I remember one of my docs saying that sometimes people will keep getting C-Diff relapses if there is an underlying condition like Crohns or UC, and I'm really bad at remembering here, but I think it was something like the C-Diff can hide out better in that kind of damaged intestinal track. (Does that sound right to any of you experts out there?)

I think overall we as a group are a rarity with all of our continuing problems, whether they be relapses, cases that don't go away easy or PI-IBS/SIBO etc. A vast majority of people seem to take some Flagyl for 10 days and are fine for the rest of their lives, never learning about or taking probiotics even. Example; everyone my parents know, hospital workers as they both work in hospitals, has taken one round of Flagyl after contracting C-Diff and never had IBS or anything else happen to them again for the rest of their lives. Hence why they initially thought I was worrying about nothing, that is until I went on a second round and lost 35 pounds in 3 weeks!

[CDiffMommy]

Jeff, I'm so very sorry to hear that you are facing this again. I too, am shocked that it has returned after so long. Even if a spore hung around, as your doctor put it, it's hard to understand how it could turn into this after not taking antibiotics. It really does not make sense, but I guess anything is possible.
You are in my thoughts and prayers for a full, very quick, recovery.
I admire your attitude going into this and I'm sure that will help you more than you know.
I hope you feel well very soon!!!

[beth22]

Jeff, don't you take something for acidity or GERD. I understand that those types of acid supressing meds can also trigger c diff, although not as bad as antibiotics.

[Vikingjeff28]

Yes, I take Nexium once a day. Doc said he would be amazed if that was it(this guy is on cutting edge of treatments, great GI). He said while possible, so is a hailstorm out of a clear sky. Anyway, what a battle getting my Xifaxin filled. My insurance company says "Xifaxin is not approved by FDA for C Diff treatment". I said you must be kidding, want to do an internet search and see? It is all over the place, 100% effective trials by Pharm companies, My Docs said it is more effective than Vanco in many cases and have been using after relapses for a while. So, they are going to give me all the samples they have to get me thru most of the taper and I will have to buy the rest on my own nickel. I handle the insurances for my company and I told them you can count on me going to ER at slightest problem where you will have to pay for everything that is done. They will not let doctors help their patients. I have been on for 3 days and mucus is almost gone already. He also gave me Colestid again to help pull toxins out. So far, I am actually functioning at work and the gym, I think all the probiotics I took over last 10 months have helped soften the blow as I took none of that stuff the first two times I got crushed by it. Let's hope and pray it gets no worse than now and I recover fully! Thanks for all your support, it means a lot.

[Vikingjeff28]

We talked about this, he said he feels Xifaxin is the definite way to go for multiple C diff cases such as mine. Many times the spores do not die in intitial round of treatment and lie dormant thus the need. I have also researched on line and found many many articles, trials and testimonials of people for whom Xifaxin worked when the others failed. Anyway, I can tell you that in 3 days I feel a world of difference, bm's down to two a day, very little mucus. He also said Xifaxin works in intestine only and very little waste. I have not been anywhere that would expose me to a new case of C diff nor have I been an abx since then.