When the COVID pandemic began, doctors thought that patients either recovered fairly quickly or they died. Before long, though, some patients identified themselves as “long haulers” because they were suffering debilitating symptoms for months after their diagnoses, neither dying nor recovering. There are people who become short of breath just walking up a few steps, […]

Show 1273: Finding Ways to Manage Long COVID

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This week, Joe and Terry Graedon welcome your questions and stories about difficulties in stopping medicines, whether prescription or OTC. Dr. Richard Friedman, an expert on drugs to treat anxiety and mood disorders, describes the symptoms of discontinuing such an agent too suddenly. Have you had trouble getting off the medication treadmill? You can ask your questions about how to stop a medicine and share your experience at 888-472-3366 between 7 and 8 am EDT. Or email us: radio@peoplespharmacy.com
You could listen through your local public radio station or get the live stream at 7 am EDT on your computer or smart phone (wunc.org). Here is a link so you can find which stations carry our broadcast. If you can’t listen to the broadcast, you may wish to hear the podcast later. You can subscribe through your favorite podcast provider, download the mp3 using the link at the bottom of the page, or listen to the stream on this post starting on June 17, 2024.
Getting Off the Medication Treadmill:
There are a number of questions we should ask as soon as we receive any prescription. What is the drug supposed to do? When do we take it? What side effects might we experience? One question we should always ask–but often don’t–is when should we stop taking it, and how.
You might be surprised how many medications could be hard to stop. You’ve probably heard that benzodiazepines used to treat anxiety or insomnia can cause unpleasant symptoms if a person stops taking one too abruptly. How suddenly is too suddenly? That seems to vary from person to person. However, while a few people have no trouble stopping cold turkey, some people need to taper the dose gradually over weeks or months.
Discontinuing Antidepressants:
People who begin to feel anxious when they stop an anti-anxiety medicine may naturally conclude that their original complaint has returned. Those who experience symptoms upon stopping an antidepressant don’t always believe that, though. That’s because symptoms of an antidepressant discontinuation syndrome tend to be more physical than psychological. People tell us they sweat, feel nauseated and dizzy, experience “brain zaps” somewhat like electric shocks or have a sensation they describe as “head-in-a-blender.” None of these were part of the original complaint of depression.
Some who have suffered from discontinuation syndrome found that decreasing the dose in tiny increments very gradually makes the symptoms tolerable. Neither the manufacturers nor the FDA have provided guidance for prescribers or patients on how to get off the medication treadmill with minimal trouble.
OTC Discontinuation Problems:
You might not be surprised that some powerful prescription products can be very tricky to stop without serious symptoms. But over-the-counter drugs are a different situation. People generally don’t think of them as triggering problems, but we have heard from hundreds of people who wind up using certain OTC products for years because they can’t figure out how to get off them.
Nasal Spray:
One of the classic examples is decongestant nasal spray. These work really well to clear a stuffy nose. However, using one for more than a few days can lead to rebound congestion upon stopping. For many people, being unable to breathe through the nose is so intolerable that they keep using the nasal spray for months or years. Some describe themselves as being “addicted to Afrin” although really the problem is not addiction but getting off the medication treadmill.
Proton Pump Inhibitors:
People take acid-suppressing drugs like omeprazole (PrilosecOTC) and esomeprazole (Nexium 24HR) to treat frequent heartburn. The label warns, however, not to use it for more than 14 days at a time. People who take such drugs for many weeks, not just two, often find that rebound hyperacidity results in heartburn worse than ever if they stop the drug suddenly. How can you get off PPIs?
Antihistamines:
Another example of OTC medications that can be difficult to quit are the antihistamines cetirizine (Zyrtec) and levocetirizine (Xyzal). Lots of people take them for a few weeks in the spring or fall when their allergies are bothering them and stop without problems. Others, especially those who have taken them for a longer time, experience intolerable itching if they stop suddenly. This itching can last up to six weeks or so, and many listeners find it so horrible that they go back on the drug.
We welcome your questions about jumping off the medication treadmill and your stories about problems you may have had. Please share your inquiries and anecdotes. You can email us: radio@peoplespharmacy.com or call 888-472-3366 between 7:00 and 7:50 am EDT on Saturday, June 15, 2024.
This Week’s Guest:
Richard Friedman, MD, is a Professor of Clinical Psychiatry and the Director of the Psychopharmacology Clinic at Weill Cornell Medicine.
Dr. Friedman’s specialties include anxiety and mood disorders, psychopharmacology and refractory depression. The article we discuss with him was published in the Washington Post. His website is https://weillcornell.org/richardfriedman
Dr. Richard Friedman, Weill Cornell Medical Center
Listen to the Podcast:
The podcast of this program will be available Monday, June 17, 2024, after broadcast on June 15. You can stream the show from this site and download the podcast for free.
Download the mp3.

Show 1389: Getting Off the Medication Treadmill

Our culture tends to avoid thinking about death. Even though we know it is inevitable, we tend to act as though it doesn’t actually pertain to us. As a result, most of us have spent little time learning how people find hope and meaning at life’s end. The intense dreams and visions that dying people report may seem strange. In this interview, hospice doctor Christopher Kerr shares his research on this unusual topic.
You may want to listen through your local public radio station or get the live stream at 7 am EDT on your computer or smart phone (wunc.org). Here is a link so you can find which stations carry our broadcast. If you can’t listen to the broadcast, you may wish to hear the podcast later. You can subscribe through your favorite podcast provider, download the mp3 using the link at the bottom of the page, or listen to the stream on this post starting on June 10, 2024.
Helping People Find Hope and Meaning at Life’s End:
Dr. Kerr begins our interview with a description of his father’s death and how it affected him at age 12. In that sense, he says, the topic of dying chose him. Nonetheless, he was unprepared when he accepted a position as a hospice doctor. It wasn’t a topic that was covered in medical school, so he learned from his patients and from the nurses caring for them. In one of his first encounters, he thought that providing the optimal medical care he had ordered for a patient with AIDS would buy him some time. But the nurse suggested that the patient dreaming repeatedly and intensely about his mother suggested instead that he was actively dying. She was right. He came to appreciate the power of the visions and dreams people have leading up to the moment of death.
Studying Pre-death Dreams and Visions:
Dr. Kerr felt that it was crucial to study this phenomenon objectively, recognizing that as the only way to get his medical colleagues to take the topic seriously. He also felt it was essential to center the patient’s experience. In his first study, patients responded to standardized questions about their dreams. Their answers, however, were far from standard.
We Die as We Have Lived:
One thing that Dr. Kerr recognized is that there is continuity between people’s lives and their deaths. The people and themes that were important during their lives most frequently show up in the visions they report as they near death. Many hospice patients find their dreams of deceased relatives very comforting. Others find that their dreams, which may be extremely intense, help them come to peace with traumatic events earlier in their lives.
Sometimes such visions are attributed to confusion, dementia or delusion caused by illness. In contrast, Dr. Kerr and his team found that people with dementia rarely report this type of vision. To provide perspective for those analyzing the dreams, he had the interviews with patients videotaped. Observers can see that patients reporting their experience are cogent and coherent, not at all confused. Being able to understand how these dreams help patients find hope and meaning at life’s end is also valuable to their families. Health professionals can also provide patients with better support if they learn how to value such visions.
Helping Families Deal with Impending Death:
The “silos” in our health care system may not always serve patients and their families very well. Dr. Kerr described an instance in which the family was told that the imaging showed that the tumor was not progressing. The doctor recommended that the patient return in two months for a follow-up study. Yet this patient was sleeping most of the time and eating less than a quarter of his usual servings. As a result, he was losing weight and strength. For the family, learning that the patient was dying helped them shift to showing him that he was loved rather than focusing on a cure.
Children’s Visions at Life’s End:
Dr. Kerr was concerned about how he would address the topic of death with Jessica, a patient who was only 13 years old. He did not have to. She told him that her dead dog Shadow came to her in her dreams, running and playing as he had when he was healthy. That made her happy, and she also told Dr. Kerr that she was not afraid that she would be alone. She was sure Shadow would be there with her.
An Old Soldier Finds Meaning at Life’s End:
One of Dr. Kerr’s patients was a veteran of World War II. As a very young man, he had participated in D-Day. On Omaha Beach, he was responsible for collecting the wounded. He tried to get them back to the ship where they could be treated. But many men did not survive that battle, and the sea ran red with blood. The horror of this experience had haunted him ever since. He would not discuss what he had seen with his children, but his wife knew that he often woke screaming from nightmares.
During his time in hospice, he had two dreams that helped him find hope and meaning at life’s end. One helped him relive the day he got his discharge papers from the Army. In the other, he saw the men that he had rescued and those he had not been able to rescue. They told him they’d be coming for him soon. That sounds terrifying, but he found it comforting. They made it clear that he was one of them, appreciated and loved. Consequently, the guilt he had felt his entire life about not saving them was gone.
This Week’s Guest:
Christopher Kerr, MD, PhD, is CEO & CMO of Hospice & Palliative Care Buffalo.
Dr. Kerr and the research team at Hospice & Palliative Care Buffalo have spent years researching the impact of end-of-life experiences on hospice patients and their families. By understanding the nature of these experiences and the role they play in the dying process, Dr. Kerr and his team are working to improve the quality of hospice care in Buffalo and beyond. Dr. Kerr is the author of Death Is But a Dream: Finding Hope and Meaning at Life’s End.
His website is https://www.drchristopherkerr.com/
Christopher Kerr, MD, PhD, is author of Death Is but a Dream: Finding Hope and Meaning at Life’s End
Listen to the Podcast:
The podcast of this program will be available Monday, June 10, 2024, after broadcast on June 8. You can stream the show from this site and download the podcast for free.
Download the podcast

Show 1388: Dreams That Help People Find Hope and Meaning at Life’s End

For years, the reigning paradigm in health care has been “Doctor knows best.” Providers rarely sought input from patients about their needs or experience. That picture has been changing, though, as more people have been using online tools to band together and find solutions for themselves and their loved ones. Susannah Fox describes the patient-led revolution in health care.
You may want to listen through your local public radio station or get the live stream at 7 am EDT on your computer or smart phone (wunc.org). Here is a link so you can find which stations carry our broadcast. If you can’t listen to the broadcast, you may wish to hear the podcast later. You can subscribe through your favorite podcast provider, download the mp3 using the link at the bottom of the page, or listen to the stream on this post starting on June 3, 2024.
The Patient-led Revolution in Health Care:
Joe, Terry and Susannah witnessed the birth of the participatory medicine movement. Dr. Tom Ferguson inspired it. He networked with physicians, patients, anthropologists and anyone else who was interested in helping health care become more accessible and attuned to patients’ needs.  Doc Tom was convinced that ePatients could make health care better. Susannah Fox shows how many patients have figured out ways to make their needs more visible and get them met.
Seekers on the Hunt:
What do people do when faced with a new diagnosis or an unexpected health development? Some rely on whatever their physician or health care provider may tell them, but others feel like they’ll have more control if they can learn as much as possible about their situation. These people are Seekers, hunting down the information that they need to understand what is happening.
Susannah shares the story of Dave deBronkart, ePatient Dave. He became a Seeker when he received a diagnosis of a potentially deadly kidney cancer.  His primary care physician referred him to an online cancer patient support group through ACOR at the same time he was referred to an oncologist. The patients in the kidney cancer group told him about a treatment that might be appropriate. Dave followed up and it saved his life. He has now become an advocate for the patient-led revolution.
Networkers and the Online Diabetes Community:
Another aspect of the patient-led revolution comes clear with the story of Dana Lewis. Dana lives with type 1 diabetes and is therefore susceptible to the possibility of hypoglycemia while she sleeps. People with diabetes call this situation “dead in bed.” She has a continuous glucose monitor that can tell if her blood sugar drops too low, but its alarm wasn’t loud enough to wake her from a deep sleep. Dana is a Networker, so she learned from the online community about a way to hack into her device and get it to trigger an alarm loud enough to save her life.
Solvers Finding Ingenious Solutions:
The person who first figured out how to get the data from a continuous glucose monitor was a father trying to care for his child with type 1 diabetes. Networkers made sure anyone participating in the community could benefit from his discovery. The online diabetes community has made strides in getting access to the data these devices generate. People with other conditions, such as atrial fibrillation, have had less success so far.
Tal Golesworthy is another example of a Solver. In his work, he deals with boilers. He lives with Marfan’s syndrome, a rare disease that results in weakened cartilage not only in joints but in the aorta. His doctors had suggested an invasive surgery to address this condition, but Tal wondered whether treating it as a plumbing problem might work. He designed a device to wrap around the base of the aorta and reinforce it. The surgery to install it is far less complicated, and many other patients with Marfan’s syndrome have now benefited from the solution he came up with.
Research in the Patient-Led Revolution:
Patients are often aware of problems that providers have overlooked. Sometimes they band together to propose research that could help them cope with such situations. One of the most striking examples is Long COVID research. Patients participated in developing the protocol for an important study published in Nature Reviews Microbiology (April 17, 2023).  It is unusual for patients to be involved in research to this extent. Often, patient groups have difficulty obtaining funding or getting their findings published where providers can learn from them. For that, they need Champions with access to resources such as money or scientific credibility. Dr. Eric Topol of the Scripps Institute was the Champion for the long COVID study.
Patients Getting Access to Their Data:
We already mentioned the diabetes online community finding ways to get access to their blood glucose data. Susannah describes the lengths patient Hugo Campos went to so that he could learn to manage the data from his implanted defibrillator. Most often, patients participating as volunteers for clinical trials do not have access to the data generated about them and their health. The informed consent documents often state that data belongs to the investigators, not the participants.
This Week’s Guest:
Susannah Fox helps people navigate health and technology. She served as Chief Technology Officer for the US Department of Health and Human Services, where she led an open data and innovation lab. Prior to that, she was the entrepreneur-in-residence at the Robert Wood Johnson Foundation and directed the health portfolio at the Pew Research Center’s Internet Project. She is the author of Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care.
Her website is https://susannahfox.com/
Susannah Fox, author of Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care
Listen to the Podcast:
The podcast of this program will be available Monday, June 3, 2024, after broadcast on June 1. This week’s episode has additional information about the history of peer-to-peer networks in health care as well as advice on finding resources and people online. Don’t miss our discussion of misinformation and disinformation online and learn why PubMed is such an important resource. You can stream the show from this site and download the podcast for free.
Download the Mp3.

Show 1387: The Patient-Led Revolution in Health Care

The term “homeostasis” was coined about a hundred years ago. What does it mean? Essentially, it is a way of describing how various systems in the body work together to maintain internal equilibrium even in the face of a changing environment. This concept is crucial to good health, as healers have known intuitively for millennia.
You may want to listen through your local public radio station or get the live stream at 7 am EDT on your computer or smart phone (wunc.org). Here is a link so you can find which stations carry our broadcast. If you can’t listen to the broadcast, you may wish to hear the podcast later. You can subscribe through your favorite podcast provider, download the mp3 using the link at the bottom of the page, or listen to the stream on this post starting on May 27, 2024.
Why Survival Depends on Natural Balance:
Ancient Greek physicians recognized that natural balance within the body was essential. They worked out a complex explanation in which four “humors” determined a patient’s health. We don’t believe in their explanation any more, but we still recognize that disrupting one part of the system will likely lead to changes in other areas to try to compensate. To understand what is happening, we need to consider the entire organism.
One expert, Dr. George Billman, explained it like this:
“It is no more possible to appreciate the beauty of de Vinci’s “Mona Lisa” or Van Gogh’s “The Starry Night” by removing and analyzing each individual dab of paint than we can understand how the various organ systems work together to maintain health by examining single genes or molecules.”
What Drugs Do to Homeostasis:
Appreciating the natural balance of our bodies may be harder when considering prescription drugs. Powerful pharmaceuticals are meant to correct pathways that are not functioning properly. However, they may also interfere with homeostasis. Sometimes they block appropriate absorption or utilization of nutrients. At other times, they may result in dysbiosis–an imbalance of the microbiome.
Another difficulty with potent drugs is that the body may adapt to the drug itself. Then, if the drug is discontinued abruptly, there is a rebound effect. This can be extremely uncomfortable, not to mention disconcerting. Many people may be aware that stopping an anti-anxiety drug suddenly can make them feel anxious and ill. But that is not the only example. Another common problem occurs when a person stops a powerful acid-suppressing drug such as omeprazole. Rebound hyperacidity resulting in heartburn symptoms is not unusual.
Maintaining the Natural Balance of the Microbiome:
Our bodies host a tremendous collection of microbes, including a wide range of bacteria, viruses and even fungi. We know the most about the microbiome of our digestive systems, although our skin, our lungs and pretty much every other body part also has its own unique microbiome.
When the microbiome goes out of balance, it becomes susceptible to even more extreme disruption. We think that’s what happens when Clostridium difficile (C. diff) becomes a problem. Although people talk about C. diff infections causing dreadful diarrhea, in most cases the C. diff was there at a low level all along, as part of the normal complement of microbes in the gut. However, when other bacteria are killed off, by a round or two of antibiotics, for example, C. diff seizes the opportunity and takes over. As a result, treating C. diff with more antibiotics isn’t always helpful and sometimes makes things worse. What is needed is a way to restore the natural balance of the microbiome.
Understanding Homeostasis:
This explanation of C. diff illuminates why understanding homeostasis is so important. Since gastroenterologists deal with the microbiome all the time, we trust that they are paying close attention to maintaining natural balance. But our guest, Dr. Robynne Chutkan, admits that her colleagues often prescribe drugs such as PPIs that upset the balance of the microbiome and result in dysbiosis.
Rebuilding Natural Balance as the Path to Health:
PPIs are certainly not the only medications that can cause trouble for the microbiome. Popular pain relievers known as NSAIDs have an impact on intestinal microbes and can also affect the gut lining. When it becomes more permeable, other illnesses arise. Restoring health requires us to consider the entire context of the individual.
This Week’s Guests:
Tieraona Low Dog, MD, is a founding member of the American Board of Physician Specialties, American Board of Integrative Medicine and the Academy of Women’s Health. She was elected Chair of the US Pharmacopeia Dietary Supplements/Botanicals Expert Committee and was appointed to the Scientific Advisory Council for the National Center for Complementary and Alternative Medicine. Her books include: Healthy at Home: Get Well and Stay Well Without Prescriptions, Life Is Your Best Medicine, and Fortify Your Life: Your Guide to Vitamins, Minerals and More. Her website is:
https://www.drlowdog.com/books
Dr. Tieraona Low Dog describes natural ways to treat heartburn
Robynne Chutkan, MD, a board-certified gastroenterologist, is a faculty member at Georgetown University Hospital and is the founder of the Digestive Center for Wellness, an integrative gastroenterology practice located in Washington DC. Dr. Chutkan is the author of the digestive health books Gutbliss, The Microbiome Solution, The Bloat Cure and The Anti-Viral Gut: Tackling Pathogens from the Inside Out. An avid squash player, runner and yogi, Dr. Chutkan is passionate about introducing more dirt, sweat and vegetables into people’s lives. Her website is
https://robynnechutkan.com/about/robynne-chutkan-md/
Robynne Chutkan, MD, author of The Anti-Viral Gut: Tackling Pathogens from the Inside Out
Listen to the Podcast:
The podcast of this program will be available Monday, May 27, 2024, after broadcast on May 25. You can stream the show from this site and download the podcast for free.
Download the mp3.

Show 1386: Why Survival Depends on Natural Balance

This week, Joe and Terry Graedon welcome your questions and stories about the dangers of overdosing on OTC meds. Dr. Lisa Sanders, an acknowledged expert on medical diagnosis, starts us off with a story about a patient’s mysterious illness. How was it linked to the medicine he was taking? You can ask your questions about OTC drug safety and share your experience at 888-472-3366 between 7 and 8 am EDT. We receive email at radio@peoplespharmacy.com.
You could listen through your local public radio station or get the live stream at 7 am EDT on your computer or smart phone (wunc.org). Here is a link so you can find which stations carry our broadcast. If you can’t listen to the broadcast, you may wish to hear the podcast later. You can subscribe through your favorite podcast provider, download the mp3 using the link at the bottom of the page, or listen to the stream on this post starting on May 20, 2024.
The Dangers of Overdosing on OTC Meds:
For most of us, the first thing we turn to when we notice a minor medical problem is a nonprescription medicine. Why wouldn’t we? Drugstores, quick marts, vending machines and other places offer as many as 300,000 such products for a wide range of symptoms. According to the FDA, these drugs can be used for self-diagnosed conditions, don’t need a healthcare practitioner to supervise their use and have a low likelihood of abuse or misuse. OTC drugs are usually affordable and don’t require seeing a prescriber.
That might not mean they are completely safe, though. About 95% of the products that are currently sold over the counter once required a prescription. The FDA decided that they were safe enough not to need expert monitoring. Presumably, patients/consumers are undertaking the necessary monitoring themselves. How do they know what to watch for?
Consumer Information on OTC Meds:
Do you read the Drug Facts on the label of your over-the-counter meds? Generally, this will tell you about the active ingredient and may also include a list of inactive ingredients. It should list its use. For example, the label for Prilosec OTC states: “treats frequent heartburn (occurs 2 or more days a week)” and cautions that it will not provide immediate relief.
Drug Facts also include important warnings. These may be somewhat esoteric, as in the warning about glucose-6-phosphate dehydrogenase deficiency on a box of phenazopyridine for urinary pain relief. If you have G6PD deficiency, you’ll know the warning is important. Those who do not may well wonder about it briefly and then forget it. Other warnings appear more generally. Products containing salicylates, including aspirin and Pepto-Bismol, caution against giving them to children or teenagers with chickenpox or the flu. That could result in Reye’s syndrome, “a rare but serious illness.”
Prescription to OTC:
You are probably aware that prescription drugs generally come with a lengthy list of side effects. Take Prilosec (omeprazole) as just one example. The prescribing information for this important medication used to treat ulcers, erosive esophagitis, Zollinger-Ellison syndrome and GERD lists more than 100 adverse reactions. Some of them are extremely serious, such as anaphylactic shock, angioedema, pancreatitis and liver failure. The package containing Prilosec OTC does not list any side effects directly. It does suggest you stop use and see your doctor if you get diarrhea or develop a rash or joint pain. What happened to the side effects from prescription omeprazole? Presumably, the maker and the FDA figure that using the OTC drug for just two weeks at a time makes serious reactions unlikely. But what if you took it for longer than two weeks? Are you in danger of overdosing on these OTC meds?
How to Stay Safe:
We will discuss reading labels and finding other important sources of information about your OTC meds. We welcome your questions about these drugs and your stories about problems you may have had.
Please share your inquiries and anecdotes. You can email us: radio@peoplespharmacy.com or call 888-472-3366 between 7:00 and 7:50 am EDT on Saturday, May 18, 2024.
This Week’s Guests:
Stefanie Ferreri, Pharm.D., is the Henry L. Smith and James L. Olsen, Ph.D., Distinguished Professor in Pharmacy Practice and Chair of the Division of Practice Advancement and Clinical Education at the UNC Eshelman School of Pharmacy. Her main research interests include advancing clinical practice in the community-pharmacy setting.
https://pharmacy.unc.edu/directory/ferreri/
Stefanie Ferreri, PharmD
Dr. Lisa Sanders is the Medical Director of Yale’s Long Covid Multidisciplinary Care Center. In addition to her work as a physician and teacher, she writes the popular Diagnosis column for the New York Times Magazine. In 2019 Dr. Sanders collaborated with the New York Times on an eight-hour documentary series on the process of diagnosis for Netflix. Dr. Sanders is the author of Every Patient Tells a Story: Medical Mysteries and the Art of Diagnosis and Diagnosis: Solving the Most Baffling Medical Mysteries.
https://www.yalemedicine.org/news/long-covid-lisa-sanders-blog-intro
Dr. Lisa Sanders
Listen to the Podcast:
The podcast of this program will be available Monday, May 20, 2024, after broadcast on May 18. You can stream the show from this site and download the podcast for free.
Download the mp3.

Show 1273: Finding Ways to Manage Long COVID

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