The 2018 North American Cystic Fibrosis Conference (NACFC) in Denver, that was awesome, eh? The Cystic Fibrosis Foundation (CFF) is making great strides in including patient voices, which has led to a selection of initiatives based on our feedback. Over the next five years, the foundation will invest $ 100 million in infection research. Wow.
The conference also had more live streaming than usual. Yay! Do I think more sessions should be streamed live? Absoutely. But CFF is moving in the right direction, in large part thanks to patient-led advocacy and the motto âNothing for us without usâ. Costs.
Controversial or ignored practices?
Anyway, I was particularly struck by a live-broadcast symposium. “Controversial practices – helpful or harmfulWhich focused on Complementary and Alternative Medicine (CAM), highlighted the contempt of many physicians for the safety implications of the use of herbal supplements not regulated by the FDA by desperate patients. because of antibiotic resistance.
I will focus on the symposium session of Sarah J. Allgood, BSN, PhD, who presented the results of a anonymous online survey from the CF community through the Johns Hopkins University and University of Southern California CF centers. For the sake of space, I will mainly use the essential oil statistics.
Here are some of the survey results:
- 38 percent of those surveyed used herbal products
- 45 percent of those who used herbal remedies used essential oils; 37 percent were released (inhaled) and 7 percent were ingested
- 81 percent didn’t tell their CF healthcare team they were using essential oils
- 39% used eucalyptus essential oil, considered âprobablyâ dangerous for children
Well, that’s worrying, as is the statistic that 57% of patients report that their CF healthcare team has never discussed CAM (which includes herbal supplements) with them.
Isn’t it the job of the CF healthcare team to treat and prevent damage? How often do doctors deal with mysterious health problems without realizing that they are caused by herbal remedies because they haven’t bothered to ask the patient if they are using them?
It’s not meant to demonize anyone
I don’t blame the CFers for using herbal supplements. A CFF representative met with me shortly after news of the $ 100 million infection initiative broke and asked what antibiotic resistance meant to me. I said that meant facing the dreaded words, “We’re running out of options.” These words arouse despair, often when one is afflicted with brain fog, which leads to risky choices being made in secret.
It was me. I was told that there were no options and that every transplant center rejected me. I had no hope in Western medicine. So I inhaled eucalyptus essential oil and ingested peppermint oil and supplements like garlic / allicin, oregano oil, turmeric, TauriNAC, and more. I was stuck in a corner, wondering, “What have I got to lose?” I have engaged in high stakes gambling.
I was eventually accepted by a lung transplant center for evaluation and quickly gave up all supplements to comply with their guidelines.
Do I believe that certain herbal remedies have helped me? I do. (No, I won’t say which ones because I just have a bachelor’s degree in history and journalism, man.) Do I think certain herbs are hurting me? Yes.
I think all CF centers would be in dire straits if they could peek into their patients’ medicine cabinets. It really is a âdon’t ask, don’t tellâ situation that doesn’t benefit anyone. In some situations, doctors enact a blanket ban on all herbal supplements without realizing that patients will continue to use them anyway. Additionally, some patients fear telling their team that they are “breaking the rules.” Dialogue is the key.
When prescribing medications, making treatment plans, and ensuring patient safety, doctors ignore what patients are ingesting âon the sideâ. Patients can suffer from it.
Doctors, stop ignoring the use of herbal supplements
The CFF shared the survey results what the CF community wants to research: Among community members surveyed, 30 percent said they wanted ‘alternative / holistic treatments and therapies’ to be prioritized, while zero percent of clinicians voted for that.
I’m disturbed. Most clinicians don’t want to research the safety and effectiveness of herbal supplements, yet 38 percent of patients surveyed used herbal remedies. Do you see the problem?
Hypothetical doctor: âI work in medicine, not in herbs. “
Sassy hypothetical me: âYour job is to protect your patient, who takes potentially dangerous substances without your knowledge, all because you won’t ask a simple question. “
I am not waging a war on weeds. I have seen its wonders. What I am saying here is not all herbal supplements are safe. Even those in the CF community most involved in promoting complementary and alternative medicine would tell you that some supplements are dangerous and others should not be mixed.
Why don’t many of our doctors, at the bare minimum, discuss the subject with patients who are most likely using herbal supplements alongside or instead of prescription drugs? A little careless, don’t you think?
To note: Cystic Fibrosis News Today is strictly a disease news and information site. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your doctor or other qualified healthcare professional with any questions you may have regarding a health problem. Never disregard professional medical advice or be slow to seek it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to stimulate discussion on issues relating to CF.