Confused re test results: pls help

[lrose14]

Good afternoon all,
First off, like many of you have kindly stated, this forum has helped me so much since being diagnosed with CDiff back in March 2017. I was clueless, lost and scared when I first read about this awful disease. Then I found this forum
And thank goodness I did! So I thank you all in advance for your support and resources.

I need help understanding these tests. I will sum up my situation as best as I can. I tested positive for CDiff on March 21st, 2017. I immediately started on Vanco, 4 times a day for 10 days. I believe I went undiagnosed for 3 months before finally getting stool tested. I did not experience D (never did) but did have the urgency to go, horrible pain that landed me in the ER twice, nausea, bloating, weight loss and overall did not feel well. By the end of treatment, I just felt weak couldn't eat much but understood recovery was a process and would take time to heal. Fast Fwd to May, I found a wonderful GI who retested me, PCR came out negative. Sadly, my anxiety levels went up, always in fear of a relapse and I was pretty deficient in many areas. I worked on regaining me again. Although to this day, I still eat very blandly. My diet has completely changed compared to my past and I've experienced reflux on a fairly regular basis.

Fast fwd some more...about a week ago I started feeling bloated, discomfort, gas, and panicked. No D but my GI sent out a stool test, that came back positive. I believe test was for toxin a/b. I ended up cancelling my family vacation to Cancun. I was prescribed Vanco but the weird thing is that I no longer feel awful. I have the medication but have not started taking it. I didn't feel terribly bad. He then tested me again this time PCR. I missed his call today but it came back positive, too! It's Friday and the office is now closed. I have no major symptoms compared to the last time. I'm so lost! I need to talk to him but will need to wait until Monday now. I'm so sorry for this long novel. I'm just upset and do not understand...do I truly have an active case. I don't want to overtreat but will I get worse. Is there any test I need to request?

[amyc]

Those are all questions for your doctor, but I will offer my opinion. I would not take vancomycin if I was not feeling sick, especially since you felt worse on vancomycin than you do now. You could fill the prescription to hold in your medicine cabinet in case you develop D or other serious symptoms. Having the prescription on hand helps me with the anxiety of suddenly experiencing a relapse, even though it has now been five years since I had C diff.

I would definitely ask your doctor about whether you could have some other issue causing GI discomfort. I would also ask if it's safe for you to fill the vanco but not take it as long as you are feeling fine, because you might have underlying health issues that make it dangerous for you to wait. We aren't doctors and don't know you health history (and don't want you sharing it on a public forum anyway).

I'm glad you found a good GI and have a good relationship! That can be really difficult, so you've already won most of your health battle.

[lrose14]

Thank you so very much for your opinion amyc! Yes, I absolutely agree with you and do plan on getting my questions answered by my doctor. My anxiety got the best of me and I've been unclear on these tests and how accurate they really are at diagnosing an active case of CDiff. Thank you again.

[beth22]

I agree with Amy. If you are not having D or symptoms, then wait and talk to the doctor on Monday. I just had another positive PCR, but negative EIA (tests for toxins). Maybe they will want to repeat the toxin test for you to see if that is still positive. The hospital where I test sends out all positive PCR tests for further testing because they don't want patients to be overtreated. If the second test is negative and the patient is not having D, then the advice stated on the form is to not treat.

[lrose14]

Thank you for your reply beth22. Your responses got me through the weekend. It felt like one of the longest ones ever. Well, it's finally Monday morning, hope to speak to my Doctor soon.
I've been blessed with overall good health my whole life...I turn 40 and bam get hit with CDiff. It has really messed with me emotionally. Thank goodness I found this wonderful forum. Many thanks again.

[beth22]

Good luck. Let us know what the doctor tells you.

[lrose14]

I spoke to my GI. Unfortunately, I was told what I did not want to hear. He advised me to start the 14 day Vanco treatment and to retest 7-10 days after. I asked him if it was possible to retest now since C is the only symptom that I'm currently experiencing. He stated that PCR is 90% accurate. I also mentioned that I was concerned about overtreating.
To sum it up, I'm feeling lost yet again. A part of me feels that I don't need to take the Vanco and can fight this bc maybe I don't have an active case and the other part of me is scared thinking I should treat since I may just have a very mild phase and can knock it all out.
Frustrating all frustrating.

[Davidtm]

Any chance you can get a second opinion from a different gi? Or an infectious disease Dr? From my understanding of your posts you are not experiencing loose stools or d and the reason most labs do not accept samples that don't take on the shape of the container (liquid) is to prevent over treating or treating asymptomatic carriage. I've heard a person can shed dead DNA that will show as positive for months after a bout of c diff. Hopefully another md with more experience can weigh everything and give you the advice you need. Feel better and keep an eye on things.

[beth22]

You can also be a carrier and not have symptoms. Any doctor can order a PCR. Do you have a PCP that can do that for you?

[lrose14]

Thank you for your suggestions davidtm and beth22. I will definitely give my pcp a call first thing tomorrow morning. I am thankful that you mentioned that. I felt that I had found a wonderful GI that had a wealth of experience with Cdiff. Have to say, I was quite thrown off to hear his response though.

The only symptom that I'm experiencing is constipation. But that could be due to the iron supplements that I am currently taking. Post Cdiff Vanco treatment in March, I was in dire need of replenishing my iron stores. (Along with boosting my b12 and vitamin D levels)
I've recently upped my probiotic intake as best as I'm able to. Unfortunately, I can't seem to handle florastor and Kefir. I do take culterelle and 3 tbsp of stoneyfield organic yogurt a day, figure it's better than nothing.

[beth22]

I can't handle Florastor or kefir either. Hopefully, your PCP can give you an order for the test.

[georgina]

Iron supplements can definitely give GI discomfort , some experience constipation , others have diarrhea.

[Acres]

Hi,
I use the probiotic vsl3 in capsule form....I find it tolerable and helpful.....

I went through several GI doctors during the nightmare....Even the one that gave me Dificid (which worked) became a colonoscopy parrot......The GI I have now is great....He has stated on several occasions we would not treat without D, even with a positive test...... He actually listens to me and considers my opinions.....

I have been lucky, my recent tests have all been negative...

A 2nd or 3rd opinion is a good thing....

Scott

[NanciT]

I want to add be careful with Iron supplements. I had the same issues with severe deficiency Post CDIFF, started on an liquid Iron which is suppose to be least irritating. I was fine for a month, but then ended up in the ER twice due to gastritis. GI did endoscopy and felt it was due to Iron. I am scheduled to go in for Infusion in July. I want to add I am 2 years post CDIFF and it still caused this severe irritation.

NanciT

[lrose14]

Thank you all so much for sharing your support and experiences with me. I really value each one of your comments. They give me strength in knowing that I'm not fighting this battle alone. I was able to see my PCP this week but sadly tested positive (yet again) for toxins. My PCP agreed with what my GI advised, to start the 14 day 4x/day vancomycin treatment.

I'm beside myself at this point. Still not experiencing D but have some mild cramping, nausea and stomach discomfort going on. I will be starting my cycle soon and my nerves have been taking over my mind. I'm constantly asking myself could these be the reasons that I am starting to feel this way? Then I also have lingering thoughts of all my positive test results.

I want to feel like the old me again so badly. I've decided to go ahead and start the treatment. I just pray that I do not ruin my family's vacation (again) and pray that I have success with the vancomycin treatment. I already had to cancel our first trip out of fear that I was relapsing. My family deserves to have a wonderful time, especially my husband who has stepped up immensely caring for our children while I was sick in bed. The start of 2017 has not been a fun one. I'm just so tired of being scared of CDiff. I read the success stories almost daily, they help give me hope.