We All Must Get Smarter About Antibiotics

Posted on by CDC's Safe Healthcare Blog

Christian John Lillis, Executive Director, Peggy Lillis Foundation
Christian John Lillis, Executive Director, Peggy Lillis Foundation

Guest Author: Christian John Lillis,
Executive Director, Peggy Lillis Foundation

I had scarlet fever when I was six years old. The infection had me in the hospital for a week, while the doctors struggled to diagnose my illness and then managed my treatment with antibiotics. One of my earliest memories is being shaken awake at least twice a night by a large, looming nurse to take another oral dose of antibiotics.

From the mid-nineteenth century through the Second World War, scarlet fever was a significant cause of childhood death causing upwards of 60,000 deaths at the turn of the century. Though death rates were decreasing throughout the 20th century1, it was the discovery and use of antibiotics that made scarlet fever a manageable illness. Luckily for me, by the time I was diagnosed in 1979, the antibiotic penicillin was widely available. My mother took me home following my week-long stay in the hospital.

Though antibiotics likely saved my life, they were also presumed to be responsible for my adult teeth coming in discolored and with overly porous enamel. Every dentist I saw, including the one who eventually helped remove some of the discoloration, blamed the huge doses of antibiotics I was given as child. Despite having otherwise straight and nicely shaped teeth, the discoloration always bothered me.

The Story of Peggy Lillis The Other Side of Antibiotics
The Story of Peggy Lillis The Other Side of Antibiotics
Unlike a lot of Americans, I’ve rarely used antibiotics throughout my life. While in high school and college, I tended to get strep throat at least once every winter. The doctor would always prescribe antibiotics and I would never take them. Instead, being a “young invulnerable,” I felt I could fight it off myself. I would gargle with warm salt water, drink tea, and live on cherry cough drops. I was never sick for more than 10 days and by the time I was 25, the bouts of strep stopped. Thankfully, I did not have any complications from strep throat and remained healthy in my 20s and 30s. But truthfully, I rarely thought about antibiotic use.

That changed with the death of my mother Peggy Lillis on April 21, 2010 from a Clostridium difficile infection. Like so many other Americans, my mother’s deadly C. diff infection began with her being prescribed a prophylactic dose of an antibiotic, clindamycin, following a root canal. Within four days, she began to experience diarrhea. Ten days after beginning her course of antibiotics, she was dead. Prior to my mother’s death, I would never have imagined that an antibiotic could precipitate a deadly disease. Like many Americans we had never heard of Clostridium difficile. Nor did we realize the system-wide effects that many antibiotics have on the body.

I’ve wondered since Mom’s death if knowing how antibiotics had affected my teeth made me subconsciously reticent to take them.

In our mother’s memory, my brother Liam and I founded the Peggy Lillis Foundation (PLF) to raise C. diff awareness and advocate for policy changes to combat the disease. A key element of our work is educating the public about the judicious use of antibiotics. To that end, we team up with organizations like the Centers for Disease Control and Prevention (CDC) to share stories like our mother’s, provide the patient and caregiver perspective, and develop shared goals and strategies.

Throughout this year, we’ve been working with CDC and other organizations to raise awareness of the role of antibiotics in causing C. diff infections. Examples include:

  • PLF partnered with the Antibiotic Resistance Action Center, Milken Institute School of Public Health, Consumer Reports, Small-r Films, and Delmarva Foundation to co-host a Washington, DC screening of Resistance, a documentary about the history and future of antibiotic resistance.
  • PLF represented C. diff patients at the June 2016 and September 2016 public meetings of the President’s Advisory Council on Combating Antibiotic Resistant Bacteria.
  • PLF worked with the National Quality Forum’s (NQF) Antibiotic Stewardship Task Force charged with designing a Playbook to aid hospitals in implementing antibiotic stewardship programs. We played a prominent role in the development and launch of the Playbook, including ensuring it centers on patients and families, speaking on a panel at NQF’s annual conference, and launching a webinar in May.

For this year’s Get Smart About Antibiotics Week, we worked with CDC on a new video about our mother’s story. The video clearly demonstrates that antibiotic use can lead to real harm, even death.

I am living proof that antibiotics are incredibly important and vital drugs. At the same time, my mother would likely still be alive today if she’d never taken that course of clindamycin.

Antibiotics can save lives. But antibiotics can take lives too. The difference in our two outcomes demonstrates how desperately we need to be smarter about antibiotics.

1 Smallman-Raynor, Andrew Cliff, Peter Haggett, Matthew (2004). World Atlas of Epidemic Diseases. London: Hodder Education. p. 76. ISBN 9781444114195.

Christian John Lillis is the Executive Director of the Peggy Lillis Foundation. He is also an adviser to the Patient Voice Institute and Gulf Coast C. diff Collaborative, as well as a member of Consumers Union Safe Patient Project and Chicago Area Patient-Centered Outcomes Research Network. Christian has 15 years experience in fundraising, advocacy and nonprofit management.

Posted on by CDC's Safe Healthcare Blog

20 comments on “We All Must Get Smarter About Antibiotics”

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    I got to know your article’s Content and your article skill both are always good. Thanks for sharing this article this content is very significant for me I really appreciate you.

    Hello all!! So I have been concerned about overuse of antibiotics for a while now and would consider myself to be aware of the negative effects; super bugs that no antibiotics can cure, tolerance being built, as well as the good bacteria in our bodies, especially guts, being wiped out causing all kinds of problems for us. My question is regarding the “super bug” concept. It makes complete sense to me that over time the bacteria mutates and gets stronger creating a situation where the antibiotics are not effective. But would this same effect happen for the good bacteria? Wouldn’t they also be mutating to become stronger and therefore not being killed off by these antibiotics? I’m just curious because gut health is so important and if the good bacteria was becoming more resistant it may help this issue. This is not to say that antibiotics are good by any means. The overuse of them is overwhelmingly negative, and our gut bacteria evolving doesn’t solve any of the other issues that arise from this overuse, like getting sick and not being able to kill it with antibiotics. But it would be reassuring to look into the resilience of our good gut bacteria and try to resolve the issues arising from bad gut health.

    I think though antibiotics likely saved many life,they were also presumed to be responsible for any complications… How remain healthy without antibiotics?

    Mr Lillis,
    I was very sorry to hear of your mother, Peggy’s, unexpected demise due to a bout of C. difficile; please accept my sincere condolences. I’ve worked as a clinical microbiologist for many years. One of my jobs was testing stool specimens for the presence/absence of the toxins (A or B) indicative of the presence of Clostridium difficile antibiotic disease or CDAD. I am particularly interested in the diagnosis and pathology of this particular disease because of it’s association with certain antibiotics as they interact negatively with the essential bacteria (flora) in our guts to produce disease instead of reducing that potential!
    This organism is anaerobic and forms into resistant/resilient spores when environmental conditions are not conducive to growth. The spores are highly resistant to cleaning agents – except for 10% clorox – and is the reason why this organism may be prevalent, environmentally, in health care organizations when rooms are not cleaned thoroughly and properly between patients. C. difficile is one of the most highly transmissible HAIs (healthcare associated infections) because of its’ highly transmissible spore-forming capabilities and ability to be easily carried throughout an institution to infect vulnerable individuals.
    I am curious, though. Was your mother prescribed Clindamycin prophylactically (before) the dental procedure or to take after? Was the oral surgeon’s office part of a larger health care institution or a separate stand alone office? Did the doctor describe possible adverse affects of this antibiotic or of other antibiotics in the class known as 3rd generation cephalosporins to have such an effect on one’s intestinal flora where C difficile diarrhea could result? If she were to experience multiple watery bowel movements daily (leading to dehydration if not caught in time), was she told to contact her physician or the ED for follow-up to rule out C. difficile associated diarrhea?
    Having worked in medical institution laboratories for many years, we have done testing on patient’s stools (watery) to rule out either the presence of an enzyme indicating the presence of the organism or the actual presence of one or both Toxins (A or B) – one a cytotoxin and the other, an enterotoxin. Lately, molecular based tests have superseded some of the latex agglutination or EIA type tests used in the past – the benefit being improved TAT to results & increased sensitivity, however in some systems the sensitivity of the testing has been so great that positives have been reported on asymptomatic patients (or “carriers”) – a person who doesn’t have the disease, according to a peer reviewed journal article I recently read. Such increased reporting (of positives) could precipitate treatment of patients for a disease they do not have unless the physician is astute enough to perform other testing to confirm the lab result. Ironically, though, true CDAD is typically treated with another antibiotic, just a different class of antibiotic than the one which precipitated the disease – typically Vancomycin or Metronidazole. In addition, a process known as stool transplantation (from healthy donors) has, more recently, and successfully been used to quickly and efficiently re-establish the missing “normal flora” from CDAD patients’ GI tract.
    As a society, we have been led to believe that antibiotics are “wonder” drugs (they are when used for the right reason and proper length of time), but they don’t cure/eliminate all infectious diseases (such as viruses, yeast, mold) and the lay public require a proper explanation, not a prescription, when an antibiotic is inappropriate. The problem lies with the public who ask their physician for antibiotics anytime they or a family member has a sniffle or cough (probably a virus) which is not affected by an antibiotic at all, but sets ones’ body up for resistance to that antibiotic should it be needed in the future. Physicians and nurses are hard pressed to educate patients on when antibiotics should and should not be used due to the “revolving door” they must maintain to book enough patients to keep their office functioning. Physicians are starting to push back though as they learn about or are exposed to situations where bacterial infections are becoming resistant to antibiotics they have typically or historically been sensitive to and are running out of choices. Bacteria have a genetic “will to live” as strong as we do and will genetically fight back to survive when over exposed to antibiotics in pill form or via our food sources.
    Like your mother, I believe education is key to change. While nurses have historically been charged with this function for patients, we have neglected what medical technologists, like me, can offer in this area. We have more training in the sciences than nurses and, since we do the testing, we understand the theory behind testing for the disease, when someone should be tested, the type and quality of specimen that should be tested, and the questions that should be asked of the patient, etc. I like CDC’s Get Smart site and used it when I embarked upon an adult education course in my area on proper antibiotic usage (fell through due to insufficient sign-up). I’d like to suggest a book you may enjoy on this general topic – “Missing Microbes”, by Martin Blaser MD (2014) – How the overuse of antibiotics is fueling our modern plagues. It’s an easy read and quite educational. I think your mother would approve!

    Sincerely,
    Joanne Gibbs, MPA, M(ASCP)

    I attended a lecture earlier this year on facial transplantation as a treatment for C. difficult. Apparently it has had good results with a very high cure rate. Is this not been approved in the U.S?

    Thank you for your work towards increasing understanding and educating about the powerful rewards and dangers of antibiotic use. I have also witnessed first hand the Life saving outcomes as well as the life endangering properties these powerful” miracle drugs” muster. May all of us acquire the Wisdom and Respect for these and other tools the Universe offers Man for our survival. Bless you and your work.

    Thank you for sharing this story about what you and your family have gone through to help save others. I am so sorry for your loss. I would never have known this danger could be a possibility without your information. Thank you!!

    Dear Sir,
    I have ben given antibiotics for years now in courses with Steroids as I have chronic Pulmonary Disease…..I am 70 now and have been told by my hospital to take Antibiotics 500mgms..every other day for the rest of my life !…..I tried this brand new tablet…and like your Mother …the side effects were instant ……So..I went o my G.P. who read the Hospital report and insisted I took these Tablets…..I have not !…..I so feel they are wrong for me…..So I am going to try going down the Alternative route..as so many of the People I know have done…..Lets hope I am right !…These Pharmaceutical companies have a lot to answer for now I feel…..Thank you for your Web Site…it has given me every more determination…to fight something I know in my Heart is just not right ……

    I had scarlet fever, measles, whooping cough all before vaccines were developed for
    their prevention. My grandchildren do not have to look forward to that misery.
    Sore throats and other ailments will respond to judicious home care without antibiotics
    In many cases. Parents should not encourage their physician to order antibiotics for small fevers and minor illnesses but allow the body initially to combat the offending
    bacteria. Of course if things don’t reverse then a stronger regime could be followed.
    Allow the body to fight the invaders first.

    A very worthwhile cause and timely, too. America is not at the forefront in the fight against this disease, particularly in the area of physician over-prescribing. Great Britain is a good model to follow in this area.

    My sympathies for losing your mother.

    God bless you

    Two and a half years ago I had my knee replaced at a big, teaching Hospital. While there I contracted Cliff. I was put on antibiotics as soon as I develeoped diaharea. They put some type of shunt in my arm and I had to administer antibiotics to myself twice a day. They came out and did frequent blood tests. I was low in iron, calcium, magnesium and others. To this day I take all those supplements and more. I was deathly ill for almost a year. My other knee is bone on bone and very painfull. I can’t have it replaced for fear of contracting cdiff again, I’ll be sixty nine years old next month. I had never heard of Cdiff. It was a nightmare. Mary Lou
    More

    I have just written a story about my husband’s experience with C-diff entitled, “Beating C-diff” Are you interested in publishing this or do you recommend a place where I could have it published? It is a practical guide to combatting this disease. I am so sorry to hear about your mother. Thank you. Elaine Crigler, RN

    I should add that I cannot watch the video so I understand that the explanation may be included in that. I just suggest that it would be helpful if the explanation is in both places. Jax

    I am so sorry for your loss; the fact antibiotics caused her untimely death is distressing! I was reading your blog carefully because I want to better understand the pertinent medical facts. Toward better fulfillment of your goal to raise awareness of the role of antibiotics in causing C. diff infections, I have a suggestion. After the line “Americans we had never heard of Clostridium difficile. Nor did we realize the system-wide effects that many antibiotics have on the body,” please explain how and why c.diff caused your Mother’s death.

    Anecdotally , it seems that tooth infections can be dangerous and can spread quickly: causing untimely deaths, especially for older people. Better understand of the risk/reward ratio in this incidence would be very valuable for patients and possibly also for Dentists & medical Doctors. I appreciate your dedication toward helping others avoid what happened to your Mother!

    Yours in peace, Jax

    What a sad story that it took one person’s death to galvanize people to pay attention! I am so sorry for your loss.
    I am an octogenarian and retired from health care.
    I started my career in 1959 and rose from a cleaner to become a director of education in a teaching hospital. One of the earliest hospitals I worked in, in the UK, (in the mid fifties) was a TB hospital where almost all the patients were on I.M. Streptomycin injection, 1 Gram once daily. There was one patient whose strain of Mycobacterium Tuberculosis was so resistant to Streptomycin, but we just kept on pumping Streptomycin into him to no avail: in fact, I still remember giving him his #1000 shot. We did not know about resistant strains then, but I do remember that a drug company came out with Diamycin soon after that – and so we duly started him off on that!
    Streptomycin came out in 1949, and it did cure TB. However, soon after I left, there were others who were beginning to show signs of resistance. By the mid sixties, I was personally coming to realizations that antibiotics were not the magical ‘anti-bacteriacidal’ that the big pharma had been promising: true there were other strategies that we had been using, true an tried that took longer, but we were being pushed to using the newer, and quicker, drugs! As things have worked out over the years, just a few of us have decried the over prescribing of antibiotics, and we have been lone voices in the wilderness! I am delighted that CDC has taken this on but I fear it is going to take time for some prescribers for them to give up their convenient medications. At least, we are now moving in the right direction – but at what cost!
    John Nicholson, Ph.D.

    I have had C-diff twice. First time was October, 2013 and then it came back with a vengeance in November, 2013, while I was away at a hotel. I had Sepsis and was deathly ill. Fortunately I did survive but I am scared to death to take antibiotics again. I have needed to take an antibiotic a couple of times since for a UTI and have taken Macrobid and Bactrim DS without any problems. I called many pharmacist’s to get their opinion on what they thought would be best for my problem. I needed a drug that would zero in on my problem and not spread the antibiotic to places in my body where it was not needed.The thought of C-diff returning is always on my mind. I am very careful now about what medications I put in my body.

    As my M.D. father taught me some 65 years ago, it’s a good idea to take Acidophilus and other “pro-biotics” after taking broad spectrum anti-biotics so as to re-colonize the gut with healthy ambient bacteria and hopefully prevent colonization by cDiff or other harmful bacteria.

    Admire you for making a difference in the effort of awareness. Sorry for the loss of your remarkable Mother.

    Peggy’s story certainly resonates with me; I contracted C. Difficile in January 2010. I had it for a year. I survived after multiple courses of different antibiotics – none worked – when I was finally able to persuade a local physician to perform a fecal transplant. The procedure was essentially unavailable in the U.S. at that time. I work in healthcare and it was a shock to realize that the lifesaving procedure I needed was not accessible, even with generous healthcare coverage. Now, more individuals are able to receive the FMT that saved my life. Unfortunately there are consequences to having had C. Difficile that will never go away, but I can live with that. Thanks to the CDC and the Foundation for your lifesaving work.

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