questioning if I should take another treatment for the c-dif

[mary k]

I have had one round of flagyl and one round of vanco. This all started around Thanksgiving. Thought I was finally done with it and the day before yesterday I had the loose stools again. So I called the gastro dr. and told her. She ordered a c-diff test again. I am waiting for the results but the funny thing is that I had formed stools today and feel good. I am afraid it will be positive and I really hated both the flagyl and vanco. Should I wait and see if I jumped the gun and maybe all the probiotics and fermented food I am eating is finally doing the trick? What is the best course of treatment after vanco? Also, thought I would mention that when I was on the Vanco my knee became very sore and at times I could hardly walk. Went to a special Rheumatoid Dr. and she said that the c-diff can make your body fight the bacteria in other parts and the knee is one of the most common. So I am on an anti inflammatory for 2 weeks and have a follow up with her. My knee is much better. Just thought I would mention because I know others have had some pain too. I hate c-diff!!!

[ppp67]

I had an inflamed knee too. I thought it was the flagyl though. Maybe it was CDIFF.
It got better with some NSAIDs.

With my experience, lots of probiotics made things soft. It's not D though which is good.
I think your experience is normal.
We all have soft episodes, for months and even years.

[Lisa33]

It sounds like you are not relapsing, but experiencing an off day or IBS, which is very typical for most after c-diff. It can take months to really get back to normal. I am optimistic that your test will come back negative. Just to note, retesting should be at least 10-14 days after finishing vanco or you can get a false result. The longer the better. Most doctors will treat based on symptoms alone for a relapse. If you are feeling well, and not having watery D more than 3 times per day for at least 3 days in a row, it is most likely not a relapse.

Keep us posted.
Lisa

[mary k]

Just got back from the Dr. It was positive and she wants me to go on difficid (sp) because I had the pain issues with the vanco. Then she said if that doesn't work then we would consider a transplant. She does them. However, the difficid is super expensive and I am waiting on some kind of coupon or something that they may be able to give me to lower it. I thought the vanco was expensive until I asked about the difficid. Now I am waiting to see. My question is about the difficid. Are there side effects for it and what should I expect? I think my body is ready to revolt. Up until this point I was a very active, healthy, recently retired third grade teacher who enjoyed her grandson. Now I don't know what to expect when I wake up. Sorry to be such a downer but this really does take a lot out of a person.

[NanciT]

Hello Mary K

Difficid is usually the next choice or the FMT. Difficid has a site and they will offer help with the cost, check it out.

I was on a long Pulse/taper of Difficid and I am now CDIFF free. I found it harsh to take but that was coming off 3 months of Vanco.

Many on the site here did very well on it and are CDIFF free!

Hope you feel better soon!
NanciT

[beth22]

I tested positive every now and then, but did not treat, because symptoms would abate. I actually had a special lab test my stool and it was found to be low grade c diff. If I remember right, about 100,000 bacteria per gram of stool. One million per gram is active infection. See how you do while you wait for the Dificid coupon. I was told to take some Pepto Bismol and that in and of itself helped and my test was subsequently negative.

[tonia]

Beth, what kind of test was that?

[tessa63]

I agree with Beth and see how you do while waiting for the Dificid. It will rear its ugly head again if its truly a relapse and if so then go for the Dificid! I failed 10 days of Flagyl and then 10 days of Vanco prior to taking 10 days of Dificid. I am in my 6th week of recovery now and am thankful for everyday. Don't worry about side effects at all because all of the meds have their demons especially Flagyl. Dificid is a lot easier to tolerate than Flagyl so its well worth it. I hate C Diff with all of my heart and soul and still feel like my colon is a prisoner at times because I have to advance my diet so slowly. We all feel your pain (literally).

T

[Bobbie]

Difficid worked many on this site but some had a problem with side effects. It is the next step in treatment and then FMT. Your doc sounds knowledgable.

Yes, some with c diff develop reactive arthritis - sometimes disappears after meds for c diff done.

[beth22]

Tonia - It was a test I sent up to a doctor in Canada. Had to clear customs, if you can imagine. It was a research hospital. I think they looked for the strain too, but they never told me what it was.

[mary k]

Still waiting for the deficid because they are going through a group that helps pay for some of it. Right now my symptoms are gone and I am having pretty regular bm's. It was bad 2 days ago and now I am feeling pretty good. The test was positive though. I am so confused, should I take the medicine when it comes or see if it was a fluke and wait it out? I know the spores have a way of hiding out in the intestine and I worry that some of them are just waiting to rear their ugly head again. Thanks for all the advice. I really have found this group to be very helpful for the c-diff suffering person.

[beth22]

If you don't have an active infection and just spores, the Dificid won't help you. It doesn't kill spores. I would hang on to the medication and see how your symptoms are. Of course, ask your doctor. But, my doctors told me that if I was not having D, then not to treat. I didn't and my tests later were negative. Even when I had the D for a couple of days, I only took Pepto Bismol.

[mary k]

Okay this is my problem, I had 2 rounds of c-diff, got off the vanco about 3 weeks ago and then a few days ago started with the d and b so I called the Dr. and got a test done which came back positive. So she decided to put me on dificid this time. I had to wait a few days because of the cost but will get it today. Here is my problem. Since I sent the test in I have not had d again. I am having formed stool and no other symptoms. Maybe all the Florastor, Keifer, yogurt, sauerkraut, and other fermented foods are finally helping. My question is after all this and since it is my 3rd go round should I hold off on the meds or take them and hope they finally get rid of this horrible problem?
The Dr. office didn't seem to think that the formed stool was a big deal and expect me to take the dificid. Thanks for any help.

[Nancy1]

If I were you I would hold off on the dificid. You may be recovering without it. If you take it at this point, you'll never know. You can always start it later if things get worse.

[beth22]

I agree with Nancy. See if your own body can fight this off. That is what I did last year when I had a positive test after 4 years. I think I may have re-infected at the hospital with my mom in ER, but nonetheless, I did not have D either and I got better without it. Sometimes even Pepto Bismol alone can help if it is low grade because it has antimicrobial properties. If you get worse, then you have the medicine. I am not a doctor. But, my doctors always told me that if there was no D or fever, bleeding, or profuse mucus, then not to treat.

Is there any way you can see another doctor and get another opinion?