A garden full of digitalis and lady bugs: how the dogma of Medicine hurts patients

A patient’s family doctor called me to discuss her PMDD which was driving behaviors for which I was seeing her. The family clinician said the patient had mentioned trying Pepcid and an antihistamine for her symptoms and then said, “I looked it up but I couldn’t find any medical literature, just the…  well, that it’s trending online.” And I got a twinge of shame. What kind of doctor was I, following internet trends instead of evidence based medicine? I wasn’t sure what to say and I’m a slow verbal processor as it is, so an awkward pause ensued. The clinician then hurriedly added “but like you told her, it’s a benign thing to try so why not?” But my face was still burning when I hung up from the call.

I’ve been a doctor long enough, and a patient long enough, and a mother of sick kids long enough, to know there are instances when you can’t stand around waiting for medical research while the ladybug’s house burns down with her children inside. Especially given so little research gets done at all into so many conditions that predominantly affect women, children, people of color, and other vulnerable groups. They tell us to be patient as we suffer and die awaiting funding for the research we’d need to find an answer they find acceptable.

But you’re being unscientific

Am I though? Am I?

Cut to sixteenth century France. A female healer is on trial. She stands accused of witchcraft. A physician brings the case against her. The evidence? A witness who testifies she healed him after the physician was of no help. He’d applied leeches and the patient got worse. She gave him a tincture of digitalis plant and he recovered. He’d used science, she’d used witchcraft.

But it wasn’t witchcraft she used. It was science. That digitalis plant went on to become the basis for digoxin, a medication we use for heart arrhythmias and heart failure today. The leeches haven’t had quite the same staying power. How did she come to use this tincture? She’d learned it from a line of female healers before her who had developed their treatments over the years using the scientific process. They’d hypothesized a certain plant would treat a condition, tried it, noted the effects and, over time, perfected the treatment through repeated experiments.

Today groups of women gather online and share the hypothesis H1 and H2 blockers might treat PMDD, they try it, they share the effects they’ve each experienced, and over time develop it. It’s not “trending” female silliness, it’s science. Modern physicians are so entrenched in the institution of Medicine and all its privilege and power, they have come to define science only as Science with a capital S: knowledge produced by MD-PhD’s in labs sponsored by grants, amplified in professional journals. They forget what science actually looks like. Because they benefit from maintaining the institution of Medicine as it is. They absolve themselves of the moral responsibility we have to help patients in favor upholding dogma. Once it was the unerring authority of the Church that blocked science, now it is the same rigid authority of Medicine.

Heresy.

I got COVID March 22, 2020 as did all my kids. We were some of the earliest cases of what would come to be called Long COVID. At that time, it didn't have a name let alone a known mechanism or treatment. It was debilitating. I joined an online group for physicians in the same situation. Many of them couldn't even work. Thing is, I didn't have the option to not work. I was a single mom of four with no savings going through a very expensive custody battle. I absolutely needed to find a way to treat this. I was also watching my kids slip further and further into the illness, losing pieces of them each day. I'd only recently gotten them back from another severe condition, PANS, and I sure as hell wasn't losing them to this damn virus. I suggested to the group we put our (unfortunately rather foggy) brains together and try to come up with possible causes of the unending symptoms and a potential treatment. My appeal was met with crickets. Of course they weren't going to do that, clutching of pearls, they would wait for research and guidelines and evidence based medicine handed down to them from the ivory towers of Medicine.

Long COVID was literally ruining their careers, their lives. They were physicians with the brain power and resources to do something about it. But they were so entrenched in dogma and afraid of professional ostracization, they stood there while it all burned down around them. Most of them were women, by the way.

They've burned my people at the stake before but they weren't going to do it again. I logged my and my kids' symptoms and our vital signs religiously for months. I talked to every doctor treating COVID that I could. At first it seemed chaotic. Each of the five us seemed to have mostly completely different symptoms. But the one thing we all had was an off and on fever that went on for months. I had been taking our temperature every four hours. Then I decided to start taking everyone's temperature each time one of us felt hot. Even if the rest of us felt okay, our temperatures were going up at the same time. Our fevers were clearly synchronized. And they weren't following a typical diurnal pattern seen in illness, where it peaks in the evening and night time and abates by morning. The fevers seemed to be coming at random. By now, I had two addiction patients who also seemed to have an unending case of COVID. It was a couple and he had been working in New York when COVID began, ground zero for COVID in the US. He was sick shortly after returning and gave it to his partner. It was impossible to get a COVID test at the time but their symptoms fit and they weren't going away. I asked them an odd question: do your fevers come on and stop at the same time as each other. Their answer was yes.

This seemed like the key to figuring out the mechanism. I again spoke to my fellow physicians, researched what conditions might cause a similar fever pattern, talked online to other patients. Ultimately, I found a naturopathic doctor who had observed the same thing. She said quite matter of factly to me: I just assumed it was some kind of environmental allergen triggering it. That was it. Mast cells. When I began looking up mast cells I found a pre-print of an article coming out the next month in the International Journal of Infectious Disease by the father of Mast Cell Activation Syndrome himself, Dr. Afrin, titled "COVID-19 hyperinflammation and Post-COVID-19 illness may be rooted in mast cell activation syndrome." Bingo.

I'd treated MCAS before in PANS patients but I now began reading everything I could on it. I developed a treatment combining a series of benign medications and tried it on myself. It worked. It was glorious. The fevers, the brain fog, the allergies to things we'd never been allergic to, the crushing fatigue, the frequent episodes of almost passing out, the GI symptoms, the hot flashes, the mood swings, all began to decrease and resolve. I tried it on my kids and it worked for them too. I went to my long COVID physician group so excited to share it with them so they could try it. None of them would. A few academic centers like Mt. Sinai and Mayo Clinic had opened long COVID clinics and these doctors had the resources to travel to them. Were they getting better? No. The clinics had little to offer as it was too soon for almost any research to have been done. But these docs were devoted to Medicine and sat suffering, leaving their patients without a doctor too. Some of them are still disabled by it today.

I tried reaching out to all the doctors I'd been talking to when I was trying to figure long COVID out and none of them wanted to hear what I'd discovered. The only exceptions were PANS clinicians. They were already followers of science, willing to go against the dogma of Medicine to one extent or another.

I explained the treatment to my two patients with long COVID and we tried it on them. It helped somewhat but not as much as it had me and my kids. We figured out which meds were helping and which weren't. I tried to sort out why it wasn't helping some of the symptoms and we tried a few other things.

We know now that long COVID is not one single condition. It has several different mechanisms. And even for the same illness, it is rare a single treatment works for every patient. I was only treating addiction at my practice by then so I didn't have too many long COVID patients. My goal of healing me and my kids had been achieved; I'd shared what I'd learned with as many clinicians as I could. I moved on to the next battle.

I tell you this story to show you just how committed to dogma most physicians are. Even when it's their own lives on the line, they stand by it. I see a lot of people questioning Medicine because they believe doctors are corrupt, that we avoid alternative medicine because we're bought off by Big Pharma or the like. That's not actually it. It runs much deeper than that. It is cognitive rigidity combined with a great fear of being ostracized, shamed, shunned by our people. And in the case of quite a few doctors, this includes not just their colleagues but their families.

I learned long ago that as a female, working class doctor from Appalachia, I was never going to rise through the ranks of Medicine. The only opinion I've ever cared about, the only loyalty I've ever felt an obligation to, is that of my patients. I read the medical journals and watch the lectures, I talk with fellow clinicians, but I also continue on with science. I cannot morally justify not doing so.

And so, yes, in addition to taking in all I can of evidence based medicine protocols and advances, I do go online and listen to what patients are saying. I do learn from the patients I see everyday. I do come up with hypotheses to test. Because sometimes when something is trending, it's because it works.