Question about testing positive 9 mo. after first infection

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kombucha
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Question about testing positive 9 mo. after first infection

Postby kombucha » Sun Nov 12, 2017 5:24 pm

Hello,
I'm a 44 year old female.
Last November, exactly a year ago, I ended up in the ER with my first ever diverticulitis attack, and i was put on antibiotics for 10 days. I had a horrible reaction to the antibiotics but powered through. In February, because of constant pain, but no diverticular infection, I was lined up for a colonoscopy. Right before the colonoscopy, I got nightmare D, much like many of you all have stated here, I called GI, and he sent me to the lab, and tested positive for c-diff. I was put on vancomycin, was feeling fine the very next day. I have since been diagnosed with PI IBS.

This Monday I woke up with terrible D, not as bad as when I had c-diff, but like many of you, I freak out anytime I get D.
The next day, I felt nausea, and pain, but no D, partly I assume, because i stopped eating (although that didn't matter when I did have c-diff).
Wednesday, I started taking oil of oregano, 3x a day.
Thursday, I ate my first real meal, feeling better.

Friday, I went into see my GI. We talked about my symptoms but he was convinced it's not c-diff, but i still asked for the test, and he gave it to me, for my peace of mind. While walking out I said, "what's going to happen if I have it again?' He laughed and said "you don't have it!"
I left feeling great, and relieved in his confidence that it was just the ibs. My next BM, was pretty firm, and my doc had told me if it wasn't watery the lab wouldn't take it so he told me to mix in a little water, lol. Ugh, even getting tested is a nightmare! Either way, I am feeling better, and eating, and today my BM seemed pretty normal. Still some side pain but I always assume it's the diverticulitis pinches I get all the time, especially before my time of the month.

My surprise?! Two test results, the one for the Toxigens A + B came back Indeterminate. A few hours later, another test result came in, and it said I'm B positive. Now the first time I got C diff, my doc called me asap. This time, well it is a weekend, no call yet. I'm very confused and wonder if anyone has had something like this happen? I'm also confused that I'm feeling better. I'm hoping someone can share thoughts or experiences, I know that I will work out with my GI what is best, but the anxiety is killing me. I feel that when I had c-diff in Feb. what suffered more than my colon was my mental health. I feel like I've never been the same again, and that I can't deal with stress anywhere as well as I did before.
Thank you for reading my first time post, and I hope I can be a support to others here as well. I appreciate any feedback.

beth22
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Re: Question about testing positive 9 mo. after first infection

Postby beth22 » Sun Nov 12, 2017 11:03 pm

Find out what kind of test it is. I have been testing positive on PCR since June 2016, after I took antibiotics while in the hospital. Except for the first test, I did not have D and my EIA tests are negative. PCR tests for toxin B. GDH testing by Quest labs came back indeterminate. The hospital lab where I take the test now tests all positive PCR tests by EIA and if that is negative, it is not considered a positive infection. I have not treated with antibiotics for c difficile. I would talk to your doctor on Monday. If you are not having symptoms, normally one does not treat, but you need to discuss it with your doctor.

kombucha
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Re: Question about testing positive 9 mo. after first infection

Postby kombucha » Mon Nov 13, 2017 2:02 am

Thank you so much, beth22, for your reply.
I spoke to my doctor tonight, he called me a couple of hours ago, so I assumed he would be telling me I need to be treated, or he wouldn't be calling on a Sunday evening.
We discussed my results and he said I should be treated and will be putting me on 3 weeks of vancomycin. I asked about the lack of D, and he said that years ago c diff presented it only through D, but that over the years he has seen more and more c diff presenting differently.
The last time, I had been off flagyl for weeks after a diverticulitis attack, and I still couldn't eat and still had pain, I lost 20 lbs. in 20 days, but blood tests found nothing . I was going to acupuncture and after 20 days I began to eat, so very little, an egg and a potato a day, but that was a miracle. I was on the mend I thought, so did everyone else in my life and then about a week into eating, bam, D, and the terrible C-diff D. I had no fever or nausea, just D, 8 times an hour. It was a shock. My doc said that that whole time i probably was sick it was c-diff.
Although right now, BM's and eating are improving, I see the same pattern happening again. This time, although I'm better than the first time, the pain, is reminding me of the last time, so I'm going to take vancomycin.
It's such a hard decision, and I'm terrified of making a mistake by taking it. This is what I hate about this c-diff, I question everything, did I not take my probiotics enough, did I eat too much junk food, did I miss a spot when bleaching everything, is this a relapse or a reinfection? So many questions. i hope this is the right choice for me. I can only pray.

beth22
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Re: Question about testing positive 9 mo. after first infection

Postby beth22 » Mon Nov 13, 2017 2:29 am

I did not do well with vancomycin, and if I treat again, it will be with Dificid. I have it sitting in my closet. I take it with me when I travel. Dificid kills less good bacteria than vanco. Maybe before you fill the Rx, you should ask your doctor about taking that. People on the site have had good results with it, but not every insurance plan covers it. Mine did.

MKW
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Re: Question about testing positive 9 mo. after first infection

Postby MKW » Mon Nov 13, 2017 10:37 am

Hi Kombucha, I am so sorry to read this is happening to you. The worst part of CDiff is the uncertainty. Did your doctor have an opinion as to whether this is a relapse or new infection? or what could be the cause of you developing symptoms again? It seems lately on this board many people have described atypical symptoms.

Machaon
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Re: Question about testing positive 9 mo. after first infection

Postby Machaon » Mon Nov 13, 2017 12:15 pm

Hi kombucha!

If you decide to take vancomycin, you might be interested in an Oxford University Press article about clinical tests where significantly fewer patients relapsed taking "one gram" of Saccharomyces Boulardii along with the vanco.

The article title is: The Search for a Better Treatment for Recurrent Clostridium difficile Disease: Use of High-Dose Vancomycin Combined with Saccharomyces boulardii

Link: https://academic.oup.com/cid/article/31/4/1012/372121

After reading that article, I took 1¼ grams of Jarrow Formulas Saccharomyces Boulardii for the 10 days that I was taking dificid, and I've continued to take ½ gram ever since, along with other probiotics. Even though I have had a full recovery, I am nervous about stopping taking them.

Best of luck and health, Bob
Male, age 73. South Florida. Retired senior computer systems analyst and programmer.

30+ yrs of CHF, perm afib, extremely sensitive asthma, autoimmune. Ex C-diff?

Diet: 6 low cal meals, 1500 cals, 5 eggs per day, 3 large salads, cereal, yogurt, cheese

kombucha
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Re: Question about testing positive 9 mo. after first infection

Postby kombucha » Mon Nov 13, 2017 12:30 pm

Hi
MKW, thank you. He didn't specify whether he felt this was a relapse or reinfection. This will be one of the questions I'll be asking him when we have a follow up in a couple of weeks. When I saw him on Friday, I mentioned that my D. was over, and although he didn't think I had c-diff again, he said that it didn't matter if I had D. or not. That he's had people who don't have D. have it. I guess, he tells them to mix a little water too, to make sure lab tests it. I don't know. Again, don't know if I've agreeing to take this round of vancomycin is the right choice, but at this point, I have to hope for the best, and stop punishing myself more than I already my other slip ups.

Hi Bob, thank you for that article and I will be reading it. I think that the S. Boulardi is what kept c-diff away. I'm the one that fell off that wagon. So, I'm glad you continue to take it. I had been eating okay for months after c-diff, but the last month, I fell into a huge depression for other reasons. I stopped many of my routines, such as cooking nearly all my meals, and having my vitamin and s. boulardi, routine everyday (I'd often forget, some days taking it, sometimes not). I did keep up all my hygienic habits though because that's just a habit. I was eating tons of junk food everyday. Everyday I kept saying I'd get back on my wagon, but everyday, I kept doing the same. I wonder if I fed the bad bacteria too much. This adds to my guilt. My job is very stressful and I've been thinking of leaving it since I first got sick, but now I'm sure it's something I have to do, I can't handle stress well which leads to my anxiety and depression, I need to take care of my health. I won't be this careless again, although depression is a beast, I have to remind myself that getting sick won't make it better and to stay on track.

I keep going back through everything I've done the last few weeks, poor eating, I did a whole spring cleaning 2 weeks ago, could I have gotten some spore that had been there since February? I wore gloves and a mask most times. The other thing is I have used my asthma inhaler a lot more. I live in the Bay Area, and after the fires in Northern California, air quality was terrible, and I had to rely on my inhaler. My asthma isn't chronic, so I only use it if I get a cold, and it affects my breathing. But this time, I've been using it a lot.

Hi Beth, yes, I did start the vancomycin. I did well with it the first time around. I had been on flagyl and cipro before for diverticulitis attack and that was horrendous. But vancomycin I tolerated well the first time around, and hopefully this will be my last time with it. I'm taking florastor and also bought some unlfavored kefir. I take S. Boulardi twice a day as well.

roy
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Re: Question about testing positive 9 mo. after first infection

Postby roy » Mon Nov 13, 2017 12:44 pm

A Dr that tells you to adulterated a sample to get round a guideline that's there to PROTECT you should be struck off!
That rule is there to prevent ovèdiagnosis and to STOP inexperienced Drs from diagnosing c.diff as a disease instead of recognising it as colonosisation.
It's now a very hard decision weather to treat or not!!
Exactly the reason why the Guidlines say don't test formed stool!

roy
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Re: Question about testing positive 9 mo. after first infection

Postby roy » Mon Nov 13, 2017 12:46 pm

Florestor and S Boulardi are the same thing, if your taking both you might be taking too much.

kombucha
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Re: Question about testing positive 9 mo. after first infection

Postby kombucha » Mon Nov 13, 2017 1:46 pm

Thank you Roy for your comment. I will take only florastor then. I just started florastor yesterday with my first dose of treatment. I understand what you're saying. I have started treatment and I'm going with it, but point taken. I'm really frightened enough, that I'm trying to be positive about my decision. It's a hard one, and I hope I made the right one for me.

MKW
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Re: Question about testing positive 9 mo. after first infection

Postby MKW » Mon Nov 13, 2017 5:14 pm

Kombucha, my sister actually lives in Santa Rosa. Many of her friends lost their houses in the fires. She told me about how awful the air quality was out there for quite a while.
I had a successful FMT in March. But before that I had C Diff recur a little over a month after a Vanco taper. I blamed myself... my diet, not enough probiotics or kefir, letting myself get stressed over the holidays, cleaning without a mask on... everything. At one point I had read spores live on surfaces 60 days. Later I found out its two years... two years? How can you even really protect yourself against spores that may have gotten in your home for two years. I find everyone who is successful that takes probiotics attributes their success to it, but most GI docs says there are NO significant studies proving they make a difference. Point is - don't blame yourself. As far as whether or not you are over treating and your doctor could have made the wrong call, I guess it's possible. but I have found with CDiff everything is a dilemma with no guarantees. You had to make a decision with no perfect options. Look at it like you have not taken an antibiotic that has wiped out your gut flora. So even if you take the Vanco unnecessarily you still will have good bacteria left. Take the florastor while on Vanco since it won't be killed off, and a multi strain probiotic and prebiotic foods for a long time after you go off it and you will have a good shot at being fine. :-)

kombucha
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Re: Question about testing positive 9 mo. after first infection

Postby kombucha » Tue Nov 14, 2017 12:49 am

MKW, I hope your sister is okay, the fires have been devastating, and I don't even live in Santa Rosa. Even if she's okay, it must be hard for her to see what her community is going through. I work in downtown San Francisco, and our skies were grey and I thought people in the city were being dramatic wearing masks, but I was wheezing after walking one block! So I started wearing one too!
First off thank you for your response, it literally made me sob, because you have provided me such comfort while I've been feeling like I'm going off the deep end having to deal with this again, after 9 months. I was so happy, I couldn't wait to get to a year of being c-diff free, because I felt that I would be hitting a big milestone, and might have less chance of getting it again, and then this, where I'm unsure of what is really happening, if I have it or I don't. Thank you for your encouragement, I can't tell you how much it has helped me, I guess I just want to feel that this decision isn't going to ruin the rest of my life, if it's wrong. What you said about no perfect options, is what has helped me. I think I burst out crying because I feel so alone, and have no one to share what I'm going through with. I don't have any family around, and I'm just dealing with this on my own. I'm no longer going to visit my parents for Thanksgiving, because they are elderly, and I don't want to take any chances. I will visit once my treatment is over and take every precaution. They are in good health, but still, I'm paranoid because of their ages. I will be staying in my apartment alone for the 2nd year, last year, I couldn't go because I was recovering from the diverticulitis attack I've mentioned here, the reason why I had to go on flagyl and cipro.
I'm appreciative to everyone here, the comments and sharing of information, and for taking the time to weigh in, and to wish me luck. I hope I can do the same here too for others.
Now, I will be working on that kefir and florastor and doing my best to get through this.
Thank you all.

NanciT
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Re: Question about testing positive 9 mo. after first infection

Postby NanciT » Tue Nov 14, 2017 11:16 am

Due to your location, I wanted to mention Dr. Neil Stollman who is Oakland and quite the expert on CDIFF. I waited months to see him but at the time I was very sick and it was well worth it. If treatment issues continue it would be worth a visit. There are several of us here on the board that have seen him.

We also see on the site treatment is all over the place, along with testing you need to go with your gut what is best for you. Its difficult when your own GI appears to know all about this and then treatment is uncertain. You are not alone in this, that's why the site is helpful to so many, we support each other, offer our personal experience and each person can then make their decision.
I must say I have never experienced so many different medical opinions( I have seen 4 GI's) about one illness, it has been shocking to me. I have been in Healthcare my entire life and had no idea how complicated this illness is to treat so you are not alone.

I hope you feel better soon
NanciT

kombucha
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Re: Question about testing positive 9 mo. after first infection

Postby kombucha » Thu Nov 16, 2017 1:15 am

Thanks NanciT,
I will definitely save Dr. Stollman's name.
I agree, it's very complicated, and the more I read, the more complex everything gets!


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