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Sara Embry was newly pregnant and contracted C difficile in a most unusual way. She picked up fecal spores at a local restaurant. She had not taken any antibiotics.

As many people who get the infection, she initially struggled to find answers to her condition. She also lacked information from medical providers. She eventually found support through the C difficile organization, the Peggy Lillis Foundation (PLF), and became a peer volunteer helping others who are suffering from the condition and seeking answers and comfort.

Embry sat down with Contagion to discuss her experience and her involvement with PLF.

Contagion: Can you share what it was like to be diagnosed with C diff while pregnant, and how you managed both the infection and your pregnancy at the same time?

Embry: It was absolutely terrifying, because all the doctors and nurses that I came into contact with didn’t really have much experience with it. They misdiagnosed me. At first, I was extremely sick for a few weeks.

I thought that I was going to lose my baby.

For one, there was no information that I could find related to pregnancy and C diff online. I kept asking doctors about it, and no one could give me any information. They just told me that vancomycin was safe for my baby, and that was the extent of it. However, whenI was experiencing C diff, I was losing weight rapidly. I couldn’t get out of bed, I couldn’t keep any food down. And for anyone that has been pregnant, they know that nutrients are very important. Morning sickness is already hard, but then adding C diff on top of it—where you’re rapidly losing the nutrients that you desperately need for your growing baby. The level of weakness that I experienced was something that I’ve never had before. My husband and I are modern day homesteaders, so I’m used to being up and working, doing all the things that I need to do, and I just wasn’t able to. And, it kept progressing.

Contagion: What were some of the most challenging aspects of your recovery from C diff, both physically and emotionally?

Embry: Well, physically, I am already a rather small person, and keeping weight on has always been hard for me, but especially in the first part of pregnancy. This was my third pregnancy. At the time, I already struggled with morning sickness and losing weight and trying to maintain that, but I lost 17 pounds in a matter of just a few weeks. I was extremely weak. I could not get out of bed. My arms didn’t even look like they belonged to me. They look like child’s arms, and I was losing my muscles.

Walking across the house was expending all the energy that I had. That’s something that I was absolutely not used to. And I had 2 other young children that I needed to care for, and I wasn’t able to, It was hard on everybody in the family. My husband had to take off work, and not being able to care for myself was something I was not used to experiencing.

Emotionally, there’s an isolation that comes along with C diff that no one really talks about, because you can’t invite people over. At first, they’ll start offering to bring you meals or help with the kids, but they couldn’t be over to the house. It was so contagious, and I was terrified of passing it along to anyone. I couldn’t let my children sit around me. They couldn’t come and talk to me and play with me. It was horrible. It was hard on them. I had an active infection for over a month, and I was completely alone. I couldn’t let anyone come around me. And that’s something it really messes with your head whenever you are that isolated.

And when I finally got over the active infection the fear of reoccurrence is something that it’s almost like PTSD, because everything that I eat, I was worried, am I going to be feeding the infection? Am I giving it? What am I doing to make it worse? What am I doing to make it better? Is every thought that I had. What can I do today that will help me tomorrow and not make it worse, but the fear of reoccurrence. I mean, I still struggle with that. One of the things that I do, I’m very, very strict about what I eat, even still, over a year later, I don’t compromise on my diet. I stick to what I know is safe, and that that’s something that I’m not sure if I’m ever going to be able to look past, because the impact that C diff has on your body is something that you can’t even describe to someone unless you’ve they’ve seen it themselves, or they’ve had it themselves. Even thinking about it just makes my stomach churn, because there’s just nothing like it.

It’s like PTSD, and itlingers and stays with you, even after the experience.

Contagion: In talking about this traumatic experience that you had with C diff, how did it inspire you to get involved with the Peggy Liillis foundation?

Embry: Yes, well, as I said earlier, finding information on C diff was extremely hard outside of a Wikipedia article. And eventually I did come across the Peggy Lillis Foundation, and they had a handbook for how to deal with the active infection, and it had recipes for foods that were safe. And what to do, like warning signs, all the things that you need to know, and that was the most in depth.

Whenever I reached out to them, I couldn’t believe that they actually wanted to talk to me. They had people who were checking in on me, and not only did they provide me with the information that I needed to get through the infection, but just that level of isolation that I talked about. The Peggy Lillis Foundation really helped me with that, because they understood—Christian [PLF cofounder] losing his mom to see death like he really understands and speaking to them, it just it made me feel like I wasn’t alone, which I had felt alone throughout the whole process up until that point, and so with them. As soon. I believe that they’re doing good work, and I’m just so incredibly thankful that I want to be able to do that for other people.

Contagion: In terms of looking at a potential message, what do you hope to convey to the public, as well as policy makers through your advocacy work with the foundation?

Embry: Yes, well, I stand behind Peggy Lillis Foundation’s vision of where we believe in a world where C diff is rare, treatable and survivable. We believe in spreading awareness and knowing for people are going through it, that they’re not alone, and that you can get through it on the other side. And with me being pregnant, for all those women out there who may have it and and can’t find any information like I did, my baby is happy and healthy and strong, and they can get through it, too.

Contagion: What are the biggest misconceptions about C diff, and how can we build better awareness to improve prevention and treatment?

Embry: Sure, I think that the biggest misconception is that it won’t happen to me. We are people that eat the food that we grow; I’m very health conscious, and it happened to me. It can happen to anybody. The mindset that it won’t happen to me. It’s for elderly people, or people with compromised immune systems, or people who abuse antibiotics. I didn’t take any antibiotics. I picked it up by going to a birthday dinner with someone at a restaurant. It can happen to anyone, and it can pull the rug out from underneath of you faster than you believe.

I think that another misconception is that it’s rare. It’s estimated to cause half a million infections each year. It’s something that everyone that I’ve encountered, they have never heard of it before, and it’s happening to so many people.

It’s not as rare as we think. I think that everyone just needs to be aware that it is a possibility that could happen to you if you’re taking antibiotics, and doctors should warn you. You know this could be a side effect of taking an antibiotic, and do you really need the antibiotic? If the answer is yes, then absolutely take it, but the answer is no, and let, let’s explore some other options, because see if it’s way worse than just trying to describe it to people is hard to do, but it’s definitely something that would outweigh me considering taking the antibiotic again, and also that it only comes from antibiotic abuse. It comes from use of antibiotic, not just abuse. You take antibiotics once, and you can get C diff, and also that the spores are everywhere they it’s not just spread by or it’s not just acquired by taking antibiotics.

it could be on the grocery cart at the store. You don’t know, and you need to wash your hands properly. And even then, don’t touch your face, and all the things that they’ve been drilling into our head the last few years of COVID.

I think that awareness is key. I had never heard of it before. Maybe if I had, I wouldn’t have felt so helpless in the beginning. The doctors and nurses that I encountered were ignorant as well. They just diagnosed me and sent me on my way. They didn’t send me any information about it. I had to learn from myself how sick I was, and that was pretty terrifying on its own. Awareness is a big one, because for something that no one’s ever heard of, it’s affecting a lot of people.

Contagion: Can you talk about what you’re doing with PLF?

Embry: I attended the summit, and we went to Capitol Hill. We advocated for being able to make your own decisions As far as prescriptions, having some freedom with your doctor and insurance companies, not dictating what we are allowed to have and what we’re not. There’s a lot of options when it comes to C diff, well, not too many options, but there are a few options, and being able to to advocate for yourself what you need is very important,

And since the summit, I have been working as a peer support volunteer. Anyone who’s going through an active treatment or active infection can contact me. PLF will assign them to me, and I can call them, email them, whatever they are in the need of what they what they feel like. Some people don’t actually feel like talking on the phone whenever they’re in the middle of a an infection, but they can email me and I’ll email them back, or they can text me and I just offer I’m just that friend that has been through it, because we talked about the isolation of it when you don’t know anyone who’s going through what you’ve gone through, and you can talk to someone who went through it and ask them questions about, you know, I can’t give medical advice. Obviously, I’m not a doctor, but if you have questions about what to know, or just how I got through some stuff. I’ll share my story with them and walk them through it. Whenever someone is having a bad day, maybe a woman who is really struggling with the depression side of it, and just being able to talk to someone who had been through it really helped her, and that that’s what helped me; just being able to speak to someone who knows really makes a difference. And that’s what I want to try to do for other people.

Infant birth weight is not significantly increased by the use of trimethoprim–sulfamethoxazole prophylaxis during pregnancy, according to a recent study published in The New England Journal of Medicine.¹

Risks of preterm birth and maternal infections

Preterm birth, small for gestational age, or low birth weight is reported in 1 in 4 newborns worldwide, increasing the risk of neonatal mortality.² Maternal infections and inflammation during pregnancy, especially human immunodeficiency virus (HIV), further increase the risks of these outcomes.¹

“Antibiotics received during pregnancy may therefore plausibly improve birth outcomes, although evidence to date is heterogeneous,” wrote investigators.

Data collection and treatment regimen

The double-blind, randomized trial was conducted to assess the impact of trimethoprim–sulfamethoxazole, a broad-spectrum antimicrobial agent, on birth outcomes in patients with HIV. Patients attending 1 of 3 antenatal clinics in Shurugwi with a positive urine pregnancy test, known HIV status, not receiving trimethoprim–sulfamethoxazole, and no contraindications were included.

The authors obtained demographic, obstetrical, and clinical data at baseline, with trained midwives performing ultrasonography to measure gestation duration. Participants were randomized 1:1 to receive either trimethoprim–sulfamethoxazole or placebo.

The trimethoprim–sulfamethoxazole regimen included 2, 480-mg tablets per day, with a single tablet containing 400 mg of sulfamethoxazole and 80 mg of trimethoprim. Placebo tablets were taken at the same rate and were indistinguishable from the study drug in appearance and taste.

Follow-up and safety assessments

Participants attended follow-up appointments at 20-, 26-, 30-, 34-, 36-, 38-, and 40-weeks’ gestation. A safety visit also occurred 1 week following initiation of the study regimen, Data about adherence, side effects, dietary intake, illness recall, obstetrical complications, and HIV was obtained during these visits, alongside blood pressure measurements.

Ultrasonography was performed at 26- and 34-weeks’ gestation to assess fetal growth. Safety measurements included liver function, kidney function, and complete blood count. Delivery was tracked by weekly telephone calls starting 36-weeks’ gestation.

Birth weight was reported as the primary outcome, while secondary outcomes included low birth weight, gestation duration, preterm birth, small for gestational age, fetal loss, maternal hospitalization or death, and neonatal hospitalization or death. Investigators also obtained z-scores for weight for age, length for age, and head circumference.

Birth outcome results

There were 993 women included in the final analysis, 495 of whom were given trimethoprim–sulfamethoxazole and 498 placebo. A median age of 24.5 years was reported in the overall study population, and a median gestation duration of 20.4 weeks at enrollment. HIV was identified in 13.2% of participants.

Most participants began the regimen at a median 21.7-weeks’ gestation. Seventeen miscarriages, 19 stillbirths, and 928 live births were reported, with 14 sets of twins. No significant differences in birth weight were reported between groups, with a mean of 3040±460 g in the trimethoprim–sulfamethoxazole group vs 3019±526 g in the placebo group.

The mean difference in birth weight of 20 g was not statistically significant. Additionally, similar results were reported for most secondary outcomes. This included low birth weight with a rate of 10% in the trimethoprim–sulfamethoxazole group and 11.6% in the placebo group.

Secondary outcomes and implications

Additional rates included small for gestational age at 20.3% and 17.3%, respectively, and fetal loss at 4.2% and 3.3%, respectively. Mean gestation durations at birth were 39.3 weeks and 38.9 weeks, respectively. Adverse events were also similar between groups.

“In this trial we found that a universal, pragmatic strategy of antenatal trimethoprim–sulfamethoxazole in a district in Zimbabwe with a high prevalence of HIV did not lead to a significant improvement in birth weight,” concluded investigators.

References

1. Chasekwa B, Munhanzi F, Madhuyu L, et al. A trial of trimethoprim–sulfamethoxazole in pregnancy to improve birth outcomes. N Engl J Med. 2025;392(21):2125-2134. doi:10.1056/NEJMoa2408114
2. Blencowe H, Cousens S, Oestergaard MZ, et al. National, regional, and worldwide estimates of preterm birth rates in the year 2010 with time trends since 1990 for selected countries: a systematic analysis and implications. Lancet. 2012;379(9832):2162-72. doi:10.1016/S0140-6736(12)60820-4

When several countries endorsed the notion of some high-risk people taking the antibiotic doxycycline after unprotected sex to lower their chances of contracting a sexually transmitted disease, as the U.S. did last year, there was a theoretical concern the shift could drive antibiotic resistance in some bacterial infections.

That risk no longer appears to be theoretical.

In a newly published letter in the New England Journal of Medicine, researchers reported a steep rise in resistance to tetracycline — the antibiotic class to which doxycycline belongs — in gonorrhea isolates collected from across the country since results of the studies investigating the use of so-called doxy PEP were made public. PEP is short for post-exposure prophylaxis. 

An earlier report out of the University of Washington showed a similar trend in the Pacific Northwest, as well as a rise in tetracycline resistance in other bacteria carried by people who took doxy PEP, specifically Staphylococcus aureus and group A Streptococcus. 

Yonatan Grad, senior author of the latest report, said there is a clear benefit in advising some people at high risk of contracting an STI to take a dose of doxycycline within 72 hours of having unprotected sex. The Centers for Disease Control and Prevention recommends health care providers discuss the pros and cons of using doxy PEP with all gay, bisexual, and other men who have sex with men, and transgender women who have had a bacterial sexually transmitted infection in the last year.

But Grad said the benefit is mainly for controlling chlamydia and syphilis, and for driving down rates of congenital syphilis, which can trigger stillbirths, miscarriages, and can result in devastating birth defects for babies born with the infection. 

Evidence is growing, however, that the benefits of doxy PEP come with a cost: increasing resistance in other bacterial pathogens, said Grad, a professor of immunology and infectious diseases at the Harvard T.H. Chan School of Public Health.

“It’s less a theoretical concern now and more [that] we have evidence to indicate that it’s happening,” said Grad, whose co-authors are from Harvard and the College of Veterinary Medicine at the University of Georgia, in Athens.

Several studies found that using a single dose of doxycycline within 72 hours of unprotected sex to fend off STIs had a dramatic effect on lowering rates of infections. Chlamydia and syphilis cases declined by nearly 80%, and gonorrhea infections dropped by about 50%. The benefit for gonorrhea will likely decline as resistant strains of the bacterium continue to spread, Grad said.

The United States, Germany, and Australia have adopted the use of doxy PEP. Other countries are either still studying the issue or actively discourage the approach. It is not recommended in the United Kingdom or in the Netherlands, for example. 

Among the concerns has been that using antibiotics in this way flies in the face of the principles of antibiotic stewardship — limiting use of these key drugs to try to preserve their effectiveness.

Grad and his colleagues studied more than 14,000 genetic sequences of the bacterium Neisseria gonorrhoeae, the cause of gonorrhea, that were collected from patients from across the country from 2018 through 2024. The sequence data were generated by the CDC’s gonorrhea surveillance system. They were looking for a gene, called tetM, that is known to confer high-level resistance to tetracycline. 

Prior to 2020, tetM was found on fewer than 10% of genetic sequences nationwide. By the first quarter of 2024, it was found in more than 30% of sequences, Grad and his coauthors reported. The sharpest increase was in the Pacific Northwest, where the earlier paper by the University of Washington researchers showed that among 2,312 men who have sex with men who were diagnosed with gonorrhea, high-level resistance to tetracycline rose from 2% of cases in the first quarter of 2021 to 65% in the second quarter of 2024.

During the time when resistance in gonorrhea rose, several factors could have contributed to the increase. But it seems clear that doxy PEP is playing a role.

“The idea being that, of course, taking antibiotics drives resistance. And you’ll see it not only in the thing you’re targeting, but also anything else that happens to be on you and in you,” Grad said.

Gonorrhea has an uncanny ability to develop resistance to antibiotics; over the course of decades, it has steamrollered its way through every one of the drugs that has been used to treat it. In fact, the only currently licensed drug that is still reliably effective against it is an antibiotic called ceftriaxone, which is not a member of the tetracycline class. Ceftriaxone, not doxycycline, is the recommended first-line treatment for gonorrhea, and resistance to the latter does not erode the effectiveness of the former. But already there are strains of the bacterium, mostly circulating in Asia, that are resistant to the drug.

Two new antibiotics that appear promising for the treatment of gonorrhea are in the development pipeline. But given gonorrhea’s history, the concern remains that they, too, could fail eventually.

Experts who were not involved in this new study said they were not surprised to see what Grad and his group found. The findings also underscore the importance of closely watching the evolving resistance patterns in gonorrhea, said Barbara Van Der Pol, a professor of medicine and public health in the Heersink School of Medicine at the University of Alabama at Birmingham.

“Monitoring of Neisseria gonorrhoeae is an important public health need,” Van Der Pol said via email.

Jeanne Marrazzo, an STI expert who was director of the National Institute of Allergy and Infectious Diseases until she was fired by the Trump administration, pointed out that the very laboratory at the CDC that does this type of surveillance and testing was inexplicably closed in April — a decision that was later reversed. “We won’t have the ability to do this type of analysis if we lose the resources that CDC has available for it,” noted Marrazzo, who before joining NIAID was the director of the division of infectious diseases at the University of Alabama at Birmingham.

Marrazzo said she does not believe the findings suggest it is time to reconsider the use of doxy PEP — but there should be an understanding that its benefits may be transient.

“As I’ve been saying for ages and others are too, it really needs to be seen as a bridge to an effective vaccine for [gonorrhea],” she said.

In any case, Grad suggested any effort to stop the use of doxy PEP would likely not be easy. At-risk populations have adopted the practice even without a formal endorsement from public health authorities. A study last week in the journal Eurosurveillance reported on an online survey of doxy PEP use in the Netherlands, where it is not recommended.

Of 1,633 men who have sex with men, transgender, and gender-diverse people in the Netherlands, 22% had used doxy PEP or PrEP (before unprotected sex) informally, 15% reported having recently used it, and 65% had a high intention to use it. 

“I think it’s a hard genie to put back in the bottle,” Grad said. “I don’t think we’re going to stop doxy PEP, and I think doxy PEP has good clinical indications. You want to try to reduce the rates of syphilis and chlamydia.”