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We sit down with Carol Raye, a patient advocate who shares her personal journey with a life-threatening C. difficile infection. Join us as Carol sheds light on the challenges she faced, the importance of responsible antibiotic use, and her mission to raise awareness about this growing health care issue. Discover how her experience has shaped her advocacy work and the urgent need for better treatment options.

Carol Raye is a patient advocate.

She discusses the KevinMD article, “A life-changing illness started with a popcorn kernel and just-in-case treatment.”

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast, and get CME for this episode by clicking on the CME link in the show notes. Today we welcome Carol Raye. She’s a patient advocate, and today’s KevinMD article is “A life-changing illness started with a popcorn kernel and just-in-case treatment.” Carol, welcome to the show.

Carol Raye: Thank you for having me.

Kevin Pho: So your story is encapsulated in that KevinMD article, so why don’t we just start there. Just tell us your story and why you wrote the article.

Carol Raye: Well, in December of 2012 my dentist prescribed clindamycin, and within weeks I was desperately ill. I was living alone at the time, and so there was no one to say, hey, get to the doctor. Luckily my boss called me and said, can you come in? And I said nope. And so she got me to the doctor.

I’d never heard of C. diff, so I was really shocked. I did educate myself by reading journals of microbiology. My first career was as a medical secretary, so I could understand and determine what I needed to do to help myself, which was very fortunate. I was very isolated.

And for six months I was on antibiotics and desperately ill. Most people know that C. diff is very physically debilitating, but it’s also mentally debilitating, and I was in a really bad state. I suffered all by myself for that time.

And then I was finally offered a fecal microbiota transplant, that was experimental use only at the time. But I grew up in the countryside around horses, and so I knew that FMT was extremely common in veterinary medicine and had been for a very, very long time. So that is where my story went. I was cured by FMT.

Kevin Pho: All right, so let’s talk about the beginning. So you mentioned that your dentist prescribed you clindamycin. What was the reason for that prescription?

Carol Raye: Well, I knew that I had a piece of popcorn hull stuck between my tooth and my root and gum, but he could not find it. And so he said, well, just take this in case it’s an infection.

Kevin Pho: And I had no idea. When he suggested the antibiotic, did you think twice about it? Did you think that this was going to be a dangerous course of action?

Carol Raye: Not at all. I was raised in the 60s and taught to take every single one of my pills.

Kevin Pho: And how did you feel after taking it? How long did it take before you started realizing something wasn’t right?

Carol Raye: I started feeling sick within about a week, but it was actually about three weeks before I sought treatment.

Kevin Pho: And tell us what you felt like leading up to seeking treatment.

Carol Raye: Well, I thought I had a stomach bug. I felt like I was weak, didn’t feel like eating, eventually couldn’t even get out of bed, could barely make it up the stairs.

Kevin Pho: So this has been going on for three weeks, and then you sought treatment. And was there an inciting event that said, hey, I needed to go to the hospital or go see my doctor?

Carol Raye: Well, I had terrible diarrhea and I was in and out of the bathroom constantly, maybe 20 times a day.

Kevin Pho: 20 times a day, wow.

Carol Raye: Yeah, I was in and out of the bathroom all the time, and literally would not leave my bed because the bathroom was nearby.

Kevin Pho: So tell us what your interaction was initially with the medical institution.

Carol Raye: So my boss called me and said, can you come in and do the year-end accounting? And I said, I’m not able to drive, I’m too sick. And she asked me a few questions and then whisked me off to the doctor.

Kevin Pho: And what kind of test did the doctor do for you at that time?

Carol Raye: It was just a PCR test, I believe. There was no toxin A and B test at that time.

Kevin Pho: OK. And when were you diagnosed with C. diff?

Carol Raye: December of 2012 I was diagnosed with C. diff.

Kevin Pho: OK. And tell us what your treatment course was.

Carol Raye: The first treatment was metronidazole, otherwise known as Flagyl, and it made me very sick, it was not working. So then I was prescribed vancomycin. I was on multiple rounds of vancomycin and had positive tests every time I went off.

Kevin Pho: And when you say multiple rounds of vancomycin, how long was each round?

Carol Raye: I think it was a 10 day taper. This was a decade ago, so I don’t remember exactly how many days.

Kevin Pho: So in terms of how long you were on vancomycin in total?

Carol Raye: Probably five out of six months, because it started with that.

Kevin Pho: So at the end of six months of vancomycin, how did you feel?

Carol Raye: I was very sick. I was terribly thin, I was so weak I could barely walk to the car when my transplant donor drove me for the procedure.

Kevin Pho: So tell us, at the end of six months you weren’t feeling better, you mentioned that you were weak and still sick. What did your doctor or medical team, what did they suggest next? Was it then a fecal transplant?

Carol Raye: Well, unfortunately my regular doctor said he did not know what else he could do to help me. And so, I mentioned that I used to be in a band, and my guitar player was a teaching physician at the residency clinic, and so I switched to treatment there, and they advocated for me to get the fecal transplant.

Kevin Pho: OK, so for those who aren’t familiar with that procedure, tell us about that.

Carol Raye: Well, it was done via colonoscopy. I believe they also did an endoscopy at the time. But essentially I had to find my own donor, because I’m extremely allergic to cow’s milk protein and I go into anaphylactic shock if I have cow’s milk whey. So I found a donor that had been on a vegan diet.

Kevin Pho: What’s it like looking for a fecal donor? Because that’s not something that happens every day.

Carol Raye: It’s not an easy task. First of all, you have to talk about poop, which is not a topic of conversation most people want to have. And I was very leery of finding someone who would give me an allergic reaction. Interestingly enough, I did have a minor allergic reaction in the recovery room, but I had antihistamines to take at the time.

Kevin Pho: So you underwent the treatment. And tell us what happened next.

Carol Raye: Literally within the few hours of recovery I was feeling better. It had been very difficult for me to eat anything other than white food, and just a total BRAT diet, for a very long time. And the first words out of my mouth when I woke up in recovery were, I think I need some french fries.

Kevin Pho: And what was the treatment course since then? Did it totally cure your C. diff? Did it come back, or was it a slow improvement?

Carol Raye: It totally cured my infection. I have never taken another antibiotic since then, so I have not had recurrent reactions or infections.

Kevin Pho: So the total time that you were sick, was it a little less than a year, is that correct?

Carol Raye: Recovery time when you’re that weak takes a few months, so it was a little less than a year.

Kevin Pho: So as you reflect on this episode, and I’m first off glad to see and hear you sounding better, what are some of the lessons that people can learn from this?

Carol Raye: Well, I wish that I had known that the antibiotics could cause an infection of C. diff. My experience has led me to want to advocate for people who suffer like I did.

Kevin Pho: So tell us some of your advocacy efforts. How are you making a difference?

Carol Raye: Well, shortly after I started to feel better, I saw a flyer in the clinic at the residency clinic and became a member of the patient advisory group for our local Idaho residency clinic. And I also volunteered to help give peer support to people who did have an ongoing infection.

Then in 2020, when the pandemic hit, I was watching a lot of different things on the internet and came across the Peggy Lillis Foundation C. diff Summit. So in 2020 I joined the foundation.

Kevin Pho: And tell us about this foundation, and how they’re making a difference and increasing awareness for C. diff.

Carol Raye: We focus on advocacy and education. And within about a year of being an advocate, I was asked to become chair of the Advocates Council, and about a year later I was asked to be on the board of directors.

And in that time frame, in the last year or so, I helped to develop the foundation peer support network. And so we are there for folks that request support, and I frequently am on the phone talking to C. diff sufferers.

Kevin Pho: You mentioned how isolating being diagnosed with C. diff is as a patient. So when you’re talking to these C. diff sufferers on the phone, tell us some of the stories that you’re hearing.

Carol Raye: Well, you are afraid for your family if you have an active infection. You don’t want to leave the house. You’re afraid of ever taking an antibiotic again. And it’s not the kind of fear that goes away once you are cured, it’s the kind of fear that stays with you for the rest of your life. I personally will avoid antibiotics at all costs.

And many people suffer through recurrence more than I did. I spoke with someone recently who had C. diff 11 years ago, took an antibiotic, and had a recurrent infection.

Kevin Pho: So for those who have these recurrent infections of C. diff, share some advice that you give them when you talk to them over the phone. Where can they turn to for support? What are some pieces of advice that you could share with these patients?

Carol Raye: Well, advocating for yourself is not always easy. So I give them some tools to help educate them, so that they will know what to ask their doctor for.

For example, we have two new microbiota restoration treatments for C. diff that have come out in the last year, and we’re on the brink of microbiome therapy for that and for other illnesses. At the moment those are very expensive, it’s difficult to get the insurance companies to approve them, but I encourage people to continue to press for the use of those restoration therapies.

Kevin Pho: Talk more about fecal transplant, because it made such a big difference in your life. And as a primary care physician myself, you’re right, I think that I would turn to the metronidazole, I’ll turn to vancomycin and rifaximin, these drugs that are traditionally used to treat C. diff. If those aren’t working and someone were interested in fecal transplant, where can they turn to for that?

Carol Raye: I think that I would like to encourage the medical community to learn about these new therapies, because metronidazole is no longer even suggested for use in a C. diff infection. Vancomycin is longtime therapy, and it is a very difficult thing to experience multiple rounds of vancomycin, and it’s debilitating.

The new restoration therapies no longer require a colonoscopy, which is really good, to have a less invasive option. Rebyota can be administered in a doctor’s office via enema, so that is much less invasive. And then Vowst is in a pill form.

Kevin Pho: And are they typically available at community hospitals, or do they have to go to a major academic center to have access to these treatments?

Carol Raye: They are available, however it is difficult because of the cost. It is difficult to get insurance to cover. And I have often encouraged people to seek maybe a medical education institute as an alternative to their regular doctor.

Kevin Pho: So for those clinicians who are listening to your story and listening to your advocacy efforts, tell us some misperceptions about C. diff patients that can help us better understand the plight of what they’re going through.

Carol Raye: Well, for a long time it has been considered to be a hospital acquired infection, but it is common in the community now, so it is community acquired.

And people think that they are immune from C. diff. However, we often carry it dormant in our gut, and it only becomes a problem once we take an antibiotic and our own microbiome is weakened.

Also, people think that it is an elderly disease, but I am aware of babies and many young people who have C. diff infections.

Kevin Pho: We’re talking to Carol Raye. She’s a patient advocate, and today’s KevinMD article is “A life-changing illness started with a popcorn kernel and just-in-case treatment.” Carol, let’s end with some of your take-home messages to the KevinMD audience.

Carol Raye: I think the most important thing to me is, C. diff is not included as a nationally notifiable disease to the CDC’s surveillance system at this time. It’s likely undercounted. And C. diff has the highest medical costs of the top five urgent threats on that list. If we were to use these new therapeutics, we would actually be spending less than the cost to treat infection.

Kevin Pho: Carol, thank you so much for sharing your story, time, and insight, and thanks again for coming on the show.

Carol Raye: And thank you for having me.