scared and sad

[Annie1951]

Hi, I'm new here. I tested positive for c diff last month, did one round of Flagyl. I had no intestinal symptoms when I was diagnosed, I'd been referred to a G.I. for gastric problems. I have gastritis with erosions, possible gastroparesis and I'm on Prevacid. The G.I. decided to test me for c diff because of prior multiple treatments with antibiotics for various illnesses from February through June. Now, 17 days after my last dose of Flagyl, I have urgency and some D at least twice a day. I'm taking Culturelle and S. boulardii and eating lots of yoghurt, which all of it hurts my stomach and I'm wondering if those probiotics coud be causing my symptoms.

I think I should be retested right away but the G.I.'s nurse told me not to worry about it. My follup up is not for another month. I'm seeing my internist today about retesting. Should I worry about false positive or false negative because of recent Flagyl treatment? I'm very scared I have relapsed. Any advice?

Also, I was planning on visiting my daughter and 3 small grandkids but we both think I should wait until I'm symptom free. I'm very sad as I fear it might take a long time before I am symptom free. I appreciate any advice or comments. Thank you,

Annie

[Bobbie]

Annie,
Standard Introduction
Welcome to the site. Read the first forum ALL USERS READ THIS FIRST & its subtopics – especially the announcements: PLEASE READ BEFORE YOU POST and GUIDELINES FOR POSTING TO OUR DISCUSSION BOARDS. They will guide you in using the site & answer some of the most frequent questions. Read Dr. Borody’s & Dr. McDonald’s articles and some of the topics in FAQ – especially Hygiene, Nutrition, & Testing.

The majority (almost 80%) recovers with one to two rounds of Flagyl or Vancocin, but an unlucky small percentage does not and can suffer for months. Everyone eventually recovers, however, unless other factors are involved (advanced age, other severe health problems). If antibiotics contributed to your C. diff. be careful about taking them again. (See FAQ-Antibiotics.) Some people can tolerate them without a problem; some develop C. diff. again. (See Dr. Borody’s article.)

The above is our standard intro. I'll try to answer your questions. Prevacid is a PPI -- they've been linked to C. diff. (See Media Reports.) I've been on a PPI for almost 8 years (acid reflux; hiatal hernia). The last time I had to take an antibiotic, I was on a PPI and did not get C. diff. No one was more surprised than I was. (I've had C. diff. twice -- the first time for 4 yrs. -- extenuating circumstances.)

PPI's have also been linked to osteoporosis. Since, I also have it. (fractured a vertebra two years ago), I've finally paid attention to the numerous studies. (Uusually, I "blow them off" -- no drug is without side effects.) I'm trying to substitute an acid reducer -- Rantidine. I've tried before - without much luck. This time I am taking it twice a day - 150 mg. each time. So far, so good, but it doesn't work as well as the PPI. Acid reducers have also been linked to C. diff. - but not as closely. I am not good about watching my diet, however, so should pay closer attention to eliminating acidic foods. Ask your doctor about this.

Probiotics are also an "iffy" subject. They help some -- don't do much for others. I am currently trying VSL3 (expensive). I used it when I was on an antibiotic for pneumonia the last time. Who knows if it helped or not? (I was on a Z-pak -- not as great a C. diff. offender as some of the other antibiotics -- but still can contribute to it.)

You should be off Flagyl or Vanco. for 7-10 days before retesting. Experts disagree on this, however. (When do two docs. ever agree on anything?) Some people even test positive when they are on meds. Some rarely test positive -- there are many false negatives in C. diff. testing. (I had only two or three positives in 4 yrs.) See FAQ-Testing. Much of this info. is out of date, but there is some info. on the latest, more accurate method. I've asked a C. diff. expert to write about the new testing -- so far have not heard back.

If Flagyl doesn't work, docs. usually try Vanco. next. (Check your insurance policy - it's expensive.)

I don't know about seeing your daughter and young grandchildren. That is a judgment call for you, your daughter, and your doc. I will say many of our posters have shared a bathroom with family members and not "spread" in the infection. We've had a few cases of family members "getting" it, however. The key to everything is good hygiene. If you do visit, ask your daughter if you can have one bathroom for yourself -- and keep it disinfected.

Good luck. Keep us posted.

[beth22]

Yes, it is possible for probiotics to cause D. Most of them do that to me, unless I take a very small dose. You could try going without for a day or two and see if it makes a difference or not.

[Annie1951]

Bobby and Beth, thank you for the info. I saw my internist today, she ordered the c diff test. I'll keep you posted. I will stop taking S boulardii for a day or so, I think it hurts my stomach. Best to you both,
Annie

[Annie1951]

I had my test results today: I tested negative for C diff. Also, no D for the past 2 days. I dare not be one hundred percent reassured that I'm out of the woods yet. Do you think I need to be re-tested in the near future? Would it be a good idea to do so before my return appointment with my G.I. next month?

Is it a good idea to keep taking probiotics from now on? Bobbie, you mentioned you're trying out a new one. Are you taking it to prevent a relapse, or to boost your immunity in general?

How do I regain my peace of mind and stop thinking that I still carry spores that can re-infect me as well as infect others? And when can I stop disinfecting my bathroom with the 10% bleach solution after each use? BTW, do Clorox Germicidal Wipes, with bleach, kill c diff on non-porous surfaces?

I don't want to keep obsessing about c diff but neither do I want to become complacent and get it again or spread it to someone else.

Thank you so much for your help, it's priceless to be able to benefit from your experience and your support.
Annie

[beth22]

If you think the probiotics caused your recent D, then try a different one. Some people take Colostrum, which is not a probiotic but has been shown in some studies to help against c diff, as it boosts the immune system in the intestines. My ID told me about it and you can search for an article on it on the site. That should not cause D, but everyone is different. BTW, Culturelle gave me D and so did Align.

[JenniferH]

I think its great you are taking precautions to avoid spreading this illness. Proper handwashing for 15 seconds, as well as disinfecting with bleach is great. Frustrating/annoying, but great! Just make sure the bleach is in a white non-see through container. Bleach breaks down after a while in a clear container, and may not be as effective.
You are most contageous when you have active D. Not so much when the D has stopped, but the spores are still present, unfortunately. I asked my Doc, When will the spores go away? And He said, it is unknown. I have tested negative 8 times, now and I still take those same precautions. I dont want to spread this to my Hubby who's a Firefighter, or my 3 small children. I use gloves as well, when I prepare food. People look at me like I'm weird, or think that I go overboard, but at this point I really dont care. I dont want anyone to go through what have gone through. Safety first in my opinion.

[rhona]

I was fine with Florastor but Culturelle didn't agree with me. And I can't take it twice a day unless I slowly work my way up to it.

I put bleach tablets in my toilet tanks and use a bleach spray to clean the bathrooms. Read the labels. After a couple of months I realizes the Cholorox wipes and other cleaners I was using didn't even contain bleach. I just assumed they had bleach.

That's wonderful news that you tested negative!