Concerns about False Positive for Recurrence

[brandine]

Hello. This is my first post. I’ve been engaged in this discussion forum for weeks—as a reader—and it has been very helpful.

I’m a 44 female and was diagnosed with C.Diff May 14 after taking strong antibiotics following a burst appendix at the end of April. I began treatment on the day I was diagnosed (stools test) and apart from 1 day of terrible D. before being diagnosed, I recovered fairly well.

I’ve had ups and downs but a few 9-10 day stretches with fairly normal BM activity. My diet has been limited to bland, no dairy, no gluten, no fruits/veg. I’ve been experimenting with taking 1 florastor in the evening. Overall, I've been hopeful that I'm on the way to a full recovery.

But now I’m concerned that I’m experiencing a recurrence.

It has been 2 months since I finished a 10 day vanco treatment. A few days ago I started having minor symptoms but assumed it was just in response to something I ate (basic IBS symptoms like so may of us suffer post-c.diff). I assumed it would go away with patience.

But then, about 36 hours ago, I started to have persistent D. that evolved into persistent M., which has lasted now over 24 hours. I understand the 24 hour/WD protocol or the 3-day protocol. Still, it can be confusing to truly identify watery D., since my initial diagnosis was after an all-day series of M. fluff that I wouldn’t exactly categorize as WD. And also, I will sometimes go a few hours without anything, or through most of the night.

Overall my symptoms concerned me, and I decided to go in.

I went to urgent care today, because it’s a Saturday, and unfortunately, the expertise just wasn’t there in the PA who treated me. I’m now waiting for a test result.

A few questions:

If my test comes back positive should I wait a couple of days until I can see my regular doctor for a better treatment plan?

Is tapered/pulsed vanco. Or difidid better for 1st recurrence? I’ve read the research but am not sure which one I should advocate for, if I need to re-treat. I'm pretty sure that I'll have to self-advocate, so I just want to know which one I should push for.

Is it possible that I could have a false positive? If so, should I wait it out a couple of days to see if symptoms improve and then consult with my doctor?

Am I putting myself in danger if I postpone treatment? (My vitals are fine and although I’m having symptoms, I still have an appetite and am feeling okay.)

I really want to avoid over-treating. But I don’t want to let the c.-diff flourish either. If my test comes back negative, then this is all for naught, but I’m trying to be proactive as I await the call. Thank-you!

[georgina]

You should look into CDI section - IBS , three day rule. It may be , as you said , a bad IBS flare because of something you ate , or it can be a virus or a common gut bug . Try to calm down and wait for the test results before you begin thinking about a new course of meds . You are 2 months into recovery , so the chances for Cdiff to be back are minor . Most relapses happen in the first month .

[brandine]

Thank-you, Georgina.

Update:

I just received a call that my test was positive, but meanwhile, my symptoms have subsided. The D./M. stopped as of yesterday (about 24 hours ago), and this morning I've had one somewhat formed BM.

I will see my regular doctor tomorrow before deciding what to do. But I'm guessing: don't treat unless symptoms persist/come back.

New question:

Could any one tell me if it's common to test positive 2 months after treatment concluded but NOT need treatment because symptoms subside? In other words, could c.diff be present but I could still be in the process of healing and not need more treatment? I was just wondering if anyone else had had this experience. I definitely don't want to over-treat. Since the D and M subsided, I think I should be okay. Has anyone else experienced this?

Thank-you.

[Ril]

A quick welcome to the forum and please read the first section on rules of posting for new members.

I would find out what kind of test was done and also whether you were tested and positive for toxins.

That said, generally symptoms are treated not test results. Had you waited a few days you would not test nor know anything was positive so this would be a moot question. I would get that information and discuss the situation with my gastro, assuming as you say, symptoms don’t worsen or come back. So yes, I agree with you but of course it is your decision.

[beth22]

I tested positive on PCR, but negative on EIA toxin test and the hospital considered it a negative test. Had they just gone by PCR it would not have been accurate for active infection. I would speak to your doctor. If your symptoms continue or worsen, I personally would opt for Dificid. I have some at home that I have not had to use despite having that positive test for over two years. I also had a few days of D and tested and it came back positive on PCR, but then symptoms subsided. I did not treat. When I would get flare ups, I just took Pepto Bismol for a day or two.

[brandine]

Thank-you, Beth.

I just returned from seeing my primary doctor. She thinks that this is a recurrence and that we should treat with vanco taper, since that is my local healthcare provider's protocol (recently adopted).

However, the D. has stopped (which I had Friday and Saturday morning), though I had 5 soft stools yesterday (Sunday).

She thinks this is just the calm before the storm, which makes me anxious about postponing treatment. Could she be right?

She is trying to set up a consult with an Infectious Disease doctor via telecast because she couldn't answer my questions about
1) my preference to take dificid over vanco
2) whether the test result could present a false positive (see test result information below), and
3) whether, since the D. has stopped for now, postponing treatment is okay.

Am I playing with fire by postpoing treatment while I wait to talk to the ID (I don't know how soon they can get me in)?


Here's what my test result said, for reference:
Results from the Xpert C. difficile/Epi Assay should be interpreted in conjunction with clinical findings and other laboratory data. Detection of nucleic acid in stools confirms the presence of these organisms in diarrheal patients but may not indicate that C. difficile is the etiologic agent of the diarrhea. In immunocompromised pediatric patients positive results may reflect asymptomatic carriage of C. difficile/Epi.

Test detects target RNA/DNA by real-time polymerase chain reaction (PCR) on the Cepheid GeneXpert Dx System.

Clostridium difficile Positive
Clostridium difficile strain 027 Presumptive Negative

[beth22]

The hospital where I test follows up all positive PCR tests with EIA to make sure that it is an active case and not just showing colonization. You will have to see how your symptoms go. My preference would be DIficid just because it targets the c diff and kills less good bacteria than vanco. I never had much success with vanco anyway and wound up getting FMT, but others have. Maybe she can call the ID and get some answers for you.

[Ril]

I agree with Beth and the way I am reading this is that you have the c diff DNA which may mean you have been colonized possibly from your previous bout with c diff. It specifically states that the presence may not be the cause of d.
You would need to be tested for toxins as Beth has been in the past. Unless you get worse I would wait for the ID dr or ask your dr to find a gastro knowledgeable in c diff and get a consult on all these issues. I personally would not treat what might happen in the future...it might not.

[roy]

You would not take a painkiller today for a headache you had last week!
Same goes for treating a gut bug thats resolved and symptoms have gone.

[brandine]

Thank-you Roy and Ril. Wise advice.

My primary doctor was still pushing the vanco taper yesterday, though no D. since Saturday...overall I'm feeling well--appetite good, no fever, doing normal daily activities. But she supported my decision to wait until getting a second opinion with ID specialist. I'll see him tomorrow (Thursday) morning.

I'm hoping the ID specialist will know what I hear on this board: to treat symptoms, not the positive test result. And that he'll be able to tell me more about the test that I had, since I'm not sure if was both PCR and EIA.

I'm also hoping that I can learn more about the difference between taking Dificid or Vanco taper should I relapse. I know that Dificid is expensive, but my insurance covers it if I can get a prior authorization. I'm wondering what the doctor can tell my insurance company to justify the Dificid over the vanco taper (If I need it). Also, no one has it in stock in my town, so it would have to be ordered, so just in case, I'd like to get it ahead to have on hand. If anyone has tips on this, I'd be grateful. But of course, I won't treat unless needed.

Thank-you for the help!
B

[georgina]

Whether or not to take the treatment is actually your decision , not your doctors. It's your body , you know it better then anyone, better then your doctor anyway. Treatment is needed when you have symptoms , not just a positive test.

[brandine]

Hi, Georgina. Thank-you. I appreciate that statement very much. An excellent reminder that I can choose and self-advocate.

I guess I worry that the c.diff is in me and wreaking havoc even though the symptoms aren't currently there. (I currently feel good overall.) I guess I'm just paranoid about the whole perforated colon/toxic mega-colon issue. As in, if I'm not treating it, am I allowing it to grow bigger/stronger in my body and, like my doctor said, it will explode like a volcano in the coming days?

OR is my body just taking care of things and I should look at this as a positive. It certainly feels like my body is healing on its own. I'm confused, probably because my primary dr. seemed to feel so strongly about treating. Maybe doctors are just not as educated on the ins and outs of this disease as they should be.

I definitely don't want to take more antibiotics if I don't have to. I just want to make sure that I'm doing the right thing. I'm worried that I won't have the strength to resist an ID doctor's recommendation to treat, should he suggest this (I see him today).

I still need to look into asking about the test too, since I'm wondering if mine didn't show positive because of colonization and not active infection.

[roy]

Your body deals with bacteria every second of every day.
Did you know theres 20,000,000 bacteria on an apple?
C.diff is just another bacteria that the body deals with and shrugs off if its healthy.
IF and only IF your immune system does not do it's intended job and you get symptoms you might then need an antibiotic.
First and foremost is your bodys own ability to "cure" all diseases.
If you dont have symptoms your not sick and you dont need treating.
Tests dont say you have c.diff colitis they only say you have the bacteria.
Theres a BIG differance!

[georgina]

The probability for the whole toxic megacolon and perforation to happen is really low , and also there are alarming symptoms prior to that (really intense abdominal pain not just some cramps ,i'm taliking about the kind of pain that won't allow you to move ,high fever, unable to pass gas , but you can still pass frequent liquid stool or mucus form the terminal part of the bowel). I have lived 2 years of my life positive for Cdiff toxin A )and have not treated and symptoms were manageable . Last year in june had a major relapse , with all the classic symptoms (not antibiotic related) , treated again with vanco and a FMT ,and let me tell you that after i finished the whole treatment and the FMT i had really bad days , lots of GI issues , D almost every day for months,tested several times and it was negative, and i was feeling worse then when i was positive .Took ton's of imodium just to be able to stay at work . That was until may this year when i found out that i also have endometriosis , not just pelvic but also digestive (rectal nodules),fused organs , lots of adhesions on my bowel , i had surgery to remove it and since surgery i never had a loose stool .

[brandine]

Thank-you. I visited with an excellent Infectious Disease doctor who supported both my desire to not treat after my recent positive test (since my symptoms have subsided--it's been one week now) and to treat with Dificid if I were to have a recurrence in the future.

He urged me to wait at least 48 hours through D. unless symptoms became very bad. In other words, it sounds like the 3-day/3-D. rule applies as long as a person is otherwise stable. He said that he treats on symptoms, not necessarily just a positive test, though he did say that he would confirm with a positive test, should the D. return with a vengeance, before treating.

He also mentioned that he believes c.diff is way over-diagnosed in hospitals and over-treated, and that this is part of the overall problem. I'm holding on for now, hoping my body is in full healing mode. Thanks for all the helpful feedback. -- Brandy