C Diff Recurrence...I can't beat it! Help!

[Cramped]

Hello from a first-time poster.

Here's my story.

I'm a male and 39 years old. Last winter I was constantly sick. My daughter had started going to daycare and bringing all sorts of germs home. I was defenseless. Then my immune system was so battered I got shingles! Between Thanksgiving and Easter I took a plethora of antibiotics for a variety of problems like sinus infections and tonsillitis. I voiced my concerns of overdoing things with the antibiotics to my doctor as he prescribed them but he said there was no alternative, I had infections that had to be fought.

Spring came and I thought I could put all that sickness behind me. At the end of June I visited the in-laws for a barbecue. That night my father-in-law experienced diarrhea. Then next day my wife and came down with it. Both of them returned to normal in a day or two. I continued having diarrhea for TWO WEEKS.

My stomach has never been the best, I am sensitive to dairy and greasy food, and my diet is abysmal, but two weeks of upset stomach was unusual, even by my standards. Doctor ordered a stool sample. I complied. And I tested positive for C Diff, which I'd never heard of.

They prescribed generic flagyl. 10 day dose. I felt better, but then I started going downhill again. Another stool sample. Still positive. Another 10 days of flagyl. By late August I seemed to have things under control.

A couple weeks before Thanksgiving I came down with tonsillitis (again). Extremely painful. I could swallow or talk. I really didn't want to take the antibiotics, and my doctor understood my apprehension, but once again, there seemed to be no choice. The infection was pretty severe.

In the first week of December my wife and I went out to eat for our anniversary. Before the meal was finished I had to rush to the bathroom. And it continued that night and into the next day. Things started looking bad. I hoped for a stomach bug or food poisoning. I gave the doctor a stool sample. One sample was negative, the other positive. So 10 more days of flagyl.

The last week in December, five days after my final dose of flagyl, I started having excessive gas and discomfort. Not so much in the way of diarrhea, per se, but something was wrong. Just ridiculous amounts of gas. A few days later my 2 year old had a stomach bug so I figured (and hoped!) we had the same thing. But she got better in a couple of days, I never did. Last Friday it started gushing out of me again before bed. Then on Sunday. And in the mornings. I went back to the doctor yesterday and he's sent me home to supply another sample. So this is where I am right now.

Is it too soon for another test? Would a false-positive be likely? Or are the symptoms enough proof that I still haven't kicked the C Diff?

I asked the doctor if I test positive again if there was a more aggressive form of treatment. He said no, flagyl is the only way, and that C Diff is often hard to get rid of.

Am I doing the right things? Should I seek a stomach doctor? If I stop eating junk and significantly change my diet would my condition improve?

Thank you in advance for any feedback you can provide. I must say I am pretty discouraged by all of this. And I worry about the risk I pose my family.

Thanks for having me on your site. I am very desperate to rid myself of this!

[justme]

Cramped: A moderator will be on shortly and welcome you to the site. Your story sounds a lot like mine in that I had copious amounts of antibiotics for a variety of things over a relatively short period of time and wound up with C. Diff. However, I did not relapse. My doctor prescribed heavy doses of probiotics in capsule form even before I was diagnosed and then after confirmation of C. Diff, I was given a bland menu to follow. It is called the BART menu and stands for Bananas/Apples/Rice/Toast. I am surprised you were given flagyl more than 2x. The usual treatment is Flagyl first, again if a relapse, then Vancomycin (sp), Dificid, and if all else fails - an FMT (fecal matter transplant). I would recommend that you start probiotics which can be taken in many forms (capsule, yogurt, kefir, etc.), start a very bland diet (stay away from anything spicy, greasy, sweet, acidic, and raw vegetables). Some of us have even given up dairy, red meat, and gone gluten free for awhile. Although C. Diff is not contagious like a virus, you should make sure that you take steps to thoroughly clean washroom facilities after you use them and wash your clothes separately until you test negative to keep other family members from contracting the spore that causes C. Diff. I hope you test negative, although a false negative if tested too soon is a possibility. Normal symptoms are 3 plus episodes of "watery" D for 3+ days. Even in early recovery, the bowels can be all over the place and diet does make a difference. Good luck and keep us posted.
Aloha,
Anne

[Bobbie]

Cramped,

STANDARD INTRODUCTION:
Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Site History” and “Information and Guidelines for Posting to our Discussion Boards.” (Note limits on posting.) This will guide you in using the site and answer some of your questions. Read Dr. Borody's articles. Also see the topics under “CDI” – particularly Recent CDC Report, C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.

“Doctors” lists physicians our posters recommended and also a worldwide list of C. diff. specialists with contact information. (Many perform FMT's.) See the forum “FMT’s and FE’s” or “Media Reports” for new information on C. diff.
The majority of patients (about 70%) recover with one to two rounds of Flagyl, vancomycin, or Dificid. An unfortunate small percentage doesn’t and can suffer for months. Most recover unless there are factors such as advanced age or other severe health problems. New treatments include FMT's, which have a high cure rate. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. 20l6 will be a year of many advances and HOPE.
Help us make others aware of C. difficle – which will lead to further advances in treating and/or preventing the infection. If antibiotics contributed to your C. diff, be careful about taking them. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested.

For more information, see other support groups including http://www.peggyfoundation.org, Clostridium Difficile Infection (CDI) Support Group, FMT Discussion, Fecal Transplant Foundation, C Diff Foundation, and the UK Support Site. There is also information on some of the better medical sites like Mayo's, Medscape, and WebMD, and the CDC website. Don't use "Dr. Google" to diagnose yourself.

This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. The best protection for you and others is thorough hand washing (soap and water are preferable) and good hygiene by you, those around you, and your health care providers.

No one will understand what you are going through except someone who has/had this unpredictable disease. All of our moderators and frequent posters had/have C. diff. (or a loved one with it) and know how physically, emotionally, and financially disabling it is.

Again, welcome. Remember, the odds are in your favor. (End of letter.)

Find another doc asap - preferably a GI or ID (infect, disease doc).

Flagyl is usually prescribed first because it is cheapest. It does work for some but not for others and can cause side effects. Vanco is the next choice. We can tell you how to get the cheapest version of it. Dificid is another choice but is very expensive unless your insurance will cover it.

Again, find another doc. Yours is not up to date.

See CDI - c diff testing and CDI - vancomycin - converting IV to oral.

Keep us posted.

[beth22]

If Flagyl doesn't work the first two times, then it is not usually given again, as Bobbie mentioned. Vancomycin or Dificid would be the next drugs to try. I would get another doctor asap as well.

[NanciT]

I agree with everyone above, find another doctor. Please make sure to see a Gastroenterologist who deals with CDIFF. If you know a nurse in your area, they may be able to advise who would be best.
Let us know how you do!
NanciT

[georgina]

Hi Cramped
Sorry you are dealing with CDiff.If your doctor tells you that Flagyl is the only treatment for CDiff then if i were you i would start looking for another doctor that has more knowledge about this illness. Flagyl is not even FDA approved anymore for CDiff treatment , the only treatments the FDA approves are : Vancomycin , Fidaxomycin and FMT.

[Dukiemom]

Cramped,
The veterans have such good info and knowledge and they are all saying you need to get a new doctor ASAP. Getting in to see a GI or ID disease specialist for a first visit can be hard and some don't have appointments for months out, yet you need proper attention now! I just want to say to be BOLD when you talk to the appointments folks. Tell them that you have little kids that you could infect. Tell them that the bacteria is causing havoc as you are speaking. I used to be polite, proper, patient with this disease and all the doctors, pharmacy, insurance and I paid the price. Once when I could not get an appointment or talk to the doctor but knew I had relapsed I offered to pay a consult fee just for a five minute phone consult with the doctor. That got to the appts secretary and the doctor called back, ordered a lab and prescribed the widely accepted 'next step'. Good thoughts for you today.

[Lisa33]

I also agree with everybody above. I cannot believe that your doctor said that Flagyl is the only answer. Please get a new GI doctor ASAP. I also agree on taking probiotics. Many on this site, including myself take VSL-3 and Florastor, along with drinking Kefir. VSL-3 is a live lactic acid bacteria. If you are on c-diff meds, be sure to space them apart as the meds will kill the probiotic. Florastor is a yeast probiotic called saccharomyces boulardii which is not killed off by meds. The other thing to note that if you are tested, there should be one sample. PCR is the most accurate test. Most doctors do not test for a cure or for a relapse, but treat based on symptoms alone. If you do retest, it should be at least 10-14 days after finishing meds, but the longer the better to avoid false results.

I hope you get in with a good GI or ID soon that is well versed in c-diff. If you are still dealing with an active infection, go with the vanco or dificid. Many have also done tapers of these meds with great success.

Lisa

[Cramped]

Thank you for all the responses. I'll definitely tell my doctor that I wish to see a GI if these samples test positive.

Speaking of the samples I haven't produced any yet. I'm actually feeling pretty good right now. Maybe it really was a stomach bug or something and this was a false alarm. But of course I would like to know for sure to put my mind at ease.

I don't do well with dairy but drank some Kefir and took Culturelle pills and probiotic chewables. I stopped taking them last weekend because I thought maybe I was overdoing it and THAT was the source of my discomfort. I was taking them very aggressively and beyond the recommended dosage because I really wanted to stamp the C Diff out once and for all. Maybe I made myself sick.

Should the C DIFF be causing me more diarrhea than it currently is? Or it this occasional discomfort evidence enough of it's presence? Or is occasional discomfort just the norm post C Diff treatment?

I am not currently taking any meds. I took my last Flagyl pill on December 23rd. I'm taking my time coming up with a specimen because I am concerned it is too soon to be trustworthy. Since the last time they tested me one sample was positive and one was negative would this be a sign that perhaps my case isn't that bad? Or that they positive reading was just picking up on some old C DIFF cells still floating around in my system?

[NikaNik]

Hi, Cramped,

Sorry you're dealing with this. I agree with the others on finding a new doc. I can't believe a doc would say Flagyl is the only thing.

It's not recommended to repeat test unless you're experiencing 3 or more D a day for several days in a row and/or other symptoms like pain/fever/blood/severe constipation. Some folks can test positive for a while after treatment even if they don't need further treatment so if they are not having symptoms = no test needed.

Do you know what type of test was used when you had the negative, then positive results? There are several different tests for c diff. The EIA toxin test is only about 60% accurate and not used as much anymore. The PCR test is about 96.9% accurate (according to the info on the C Diff Foundation site) and the GDH is also very accurate. But since the PCR and GDH detect the DNA of c diff, that means they can be positive but they person might not need treating unless they have symptoms (sometimes they will run a toxin test along with a PCR or GDH and if they are both positive and the person has symptoms, they will treat).

Hope that makes sense and I hope you feel better soon!
Nikki

[seekingcure]

Glad you are feeling better today. It is possible that you were overdoing it with the probiotics and kefir and that was causing the issue. At this point, it's probably just a wait-and-see situation. If you start having diarrhea again then it is time to get tested. I would go ahead and get an appointment set up with a GI just in case. You need to have a doctor available who knows how to treat c-diff in case it rears its ugly head again. Keep us posted.

[tessa63]

You got some great advice with all of the above posts. I am sensitive to probiotics and have had some bad symptoms from them as well. I would definitely take the above advice and make an appt with a good GI or ID doc now so that you establish a relationship with a doctor who knows about C Diff. Then if you get into trouble in the future, you can reach out to that doctor who knows what they are doing. Please don't ever take Flagyl again if you can avoid it as there are much better drugs to treat this infection. It sounds like things have settled down and I am happy for you but would still make that appt ASAP. You will have to wait to see a doc anyway,

[saraht]

I hope your test comes back negative! I was in your boat too when I first got c.diff. My dr's treated me repeatedly with flagyl, and I relapsed over and over and over. They didn't think they had any other options, so they referred me to a GI, who put me on vanco. I was cured quickly that time (wish it was still that easy now)

Everyone has given great advice, please keep us updated!! Hoping for good results for you!!

-Sarah

[Jackie25]

I'm with Sarah. I was also one who was given 3-4 rounds of flagyl I think it was? I finally was referred to a GI who quickly switched me to vanco and couldn't believe I was given flagyl so many times. That stuff is awful! I honestly think it made me feel much worse than the c diff ever did. Vanco was so easy to take and worked so well for me, and many others.

I hope your test comes back negative :) if not, get yourself a GI and a more reliable medication! I hope you keep making progress in your recovery!

[Cramped]

Well, the diarrhea never came back, so I guess it was a false alarm. Maybe I beat the CDiff after all. Knock on wood.

Thank you for all your responses. I'm sure I'll be back for more advice/emotional support the next time I'm forced to take an antibiotic.