Vent. Probable relapse. Part II

[susant]

Just got a copy of my lab results and the test for c diff was the EIA toxin test. GREAT. Now a false negative is very possible. My bm are a little more formed now so my hope is that the test was correct but I'm so frustrated with being told I'm getting a pcr test and it actually being toxin test.

[seekingcure]

Hopefully, if you did have a relapse, your body is fighting it off on its own, which is the best possible outcome. If your symptoms continue or become worse, you know what to do. Find a lab that actually does the PCR and take your sample there. Call the lab and ask to speak to the person who actually does the tests and ask them what test they use. Typically, the local labs will be the ones more likely to use the older toxin tests and the hospital labs will be more likely to use the PCR or LAMP tests. I'd check with the hospital lab first if you need to have a repeat test. I'm sorry you are having to go through all this worry. Keep us updated on how you do.

[susant]

Don't you have to have a doctor order the test for you?

[beth22]

My doctor writes the order on a prescription pad and gives it to me and I take it to whichever lab I want. Usually they fax me the prescription. You can call your doctor's office and ask if they can do that for you and mail or fax it.

[susant]

Anyone ever gotten a positive using EIA? All I have ever heard are false negatives. Thank you for the advice. I will look into getting that from my doctor.

[justme]

susant: I was told by an infectious disease doc that a toxin test soon after the treatment for C. Diff might still be positive because the bacteria was colonized, but no longer active, and to wait awhile before getting tested, especially if my stool was firming up. I didn't get tested until a year later in the hospital for a TIA (and it was negative for toxins). If you are not having watery stool several times a day, your body is probably successfully fighting the bacteria. If so, it will be awhile until you heal and it could take a few weeks, months, or even longer. I ran into a friend at Walmart today who told me her husband and his brother had ulcerative colitis. Her husband had to have part of his colon removed, had a bag or awhile, and then the rest of the colon was reattached. His brother died from it. I felt lucky that I had C. Diff and not another form of colitis that is much worse and chronic. She said his trigger foods are about the same - dairy, raw veggies, sweets, nuts, and spicy food. I've noticed that most of us on this site react to those same triggers. I told her about this site and that he should find one on ulcerative colitis where he could share his experiences with others who are suffering from the same thing. This site has helped me tremendously. We have all been where you are and know what you are going through. Good luck.
Bobbie and beth22: Thanks for all your good thoughts and advice. It is much appreciated.
Aloha nui loa,
Anne

[beth22]

I have tested positive on the EIA. When I had active c diff in the beginning, there was no PCR that was done around here. I never tested positive until about two or 3 weeks after stopping vanco though.

[getwellsoon]

I also had a positive test with the EIA. I had many false neg. but I was always on ATX so those don't really count.

[Bobbie]

Insist on a PCR.

[susant]

Just got results back from celiac test. That was negative. Now he wants to do a colonoscopy. I will not be doing that until I have a pcr test. I have a call in to ask about doing a pcr test this time. I was told it was pcr to begin with but after requesting a copy of the test it was eia toxin. So irritating!

[Bobbie]

Know how you feel. Sometimes, dealing with the medical profession is like walking through a minefield. Check, check, and double check.

[susant]

Sending in a sample tomorrow for pcr. I was doing better and now back to doing worse. If this is pibs I'm hoping it doesn't last forever. I'm hoping it's not c diff as it had been waxing and waning but I don't know at this point. I'm kind of at a loss.

[susant]

Finally got my pcr results today. Negative. I have started on vsl#3 probiotic and can't really tell if it's helping at this point or if anything is going to help. I'm so frustrated at this point. I'm living on crackers and bread because that seems to be all I can tolerate.

[Bobbie]

If PCR negative, begin adding other foods slowly. Neg. PCR good news.

[justme]

Susant: Add bananas into your diet. They are usually tolerated well and have a lot of calories. I went Gluten Free at the beginning and ate Rudy's tapioca bread and potato beard. They are easier on your colon in he beginning. Boiled chicken fried with squash and mushrooms is also pretty easy on the colon. Chicken and Rice soup goes down well as does miso soup. Baked potatoes, eggs, rice, and chicken and fish are also easy on the digestion. Introduce new food gradually. Problem foods seem to be the same for most of us - spicy food, sweet treats, raw vegetables, and anything dairy seems to be a little too harsh on the colon. Take probiotics if you can (I can't because they cause so much gas) Dairy food (anything will milk) can be rough on your system. Good Luck. Let us know how you are doing.
Aloha,
Anne