Welcome to SCIENCE MADE PRACTICAL

Award-winning investigative science writer Amy Alkon exposes medical myths, misinformation, and malpractice and draws on science across disciplines to light your way to your best, boldest life.

I AM A MEDICAL DETECTIVE. I look at people’s labs, evaluate their doctor’s diagnosis and treatment advice, and then figure out what’s really going on—and what’s scientifically warranted.

I have also become a sort of lie detector for scientifically crap claims that doctors make. In just about every conversation I have with doctors, I hear them making declarations of supposed medical fact—untethered from science and the most basic understanding of human physiology

There are doctors practicing the evidence-based medicine we’re led to believe we are getting, but they are few and far between. We don’t want to believe that, because it means we can’t trust our doctors to help us instead of harming or killing us.

But the US National Academy of Medicine reports that more than half of our medical care in the US may not be “based on or supported by adequate evidence.”

Our medical care won’t become evidence-driven overnight. We, the patients, need to understand the science so we can bring it to our doctors and ask for the evidence-driven care most are often unable to provide.

That is a major mission of this newsletter. But evidence from scientific research is only part of the story.

A doctor’s diagnosis and proposed treatment must make sense in light of human physiology—the physical and functional makeup of the human body and its parts: the workings of the human “factory.”

But doctors often lack a meaningful understanding of physiology—beyond once cramming on it to pass med school and their boards. And by understanding it, I mean both understanding physiologic function and the need to take it into account in patient diagnosis and treatment.

“Doctors ignore physiology? Come on, Alkon!”

I know that sounds unbelievable, but—to name one disturbing example—there’s my cornea surgeon, an elite practitioner, highly respected for her surgical skill.

I was grateful to have her as my corneal endothelium transplant surgeon—or as I put it, “The person sticking the X-acto in my eye.”

The corneal endothelium is basically the plumber of the eye—a one-cell-thick sheet of tissue that pumps out fluid so it won’t build up and blur your vision.

I was in need of a set of these “aftermarket parts” due to a genetic disease—Fuchs endothelial corneal dystrophy (aka FUCKFUCKFUCKYOU! dystrophy)—that causes you to progressively lose your vision, and in severe cases, go blind.

Upon diagnosing me, she mentioned that I’d need to take steroids (in eye drop form). Forever.

I expressed concern—noting that steroids eat bones and can lead to jacked-up blood pressure and blood sugar, gastro issues, and suppression of the immune system.

“These don’t have systemic effects,” she told me—perhaps believing this because they’re inserted into the eye in drop form instead of taken orally.

I immediately knew she was wrong.

Hello?! Tear Ducts, Anyone?!

There’s a hole—that little hole in the corner of your eye—that’s the opening to the drainage system that leads down to your tear duct plumbing. (It’s actually got a partner hole on top.)

Squeeze an eye drop into your eye and a bunch of it goes right down the “pipes”—into your nose and the back of your throat—and gets distributed to your body (AKA your “system,” home of those fun “systemic effects”).

You can block some of it from going down the hatch with your big clumsy thumb smushed into the corner of your eye after insertion. However, like me, you’re sure to taste the ineffectiveness of this measure when a good bit of that liquid steroid still makes its way down your nose and into your throat.

Consider that my surgeon deals with various forms of tear dysfunction, plus the eye is not exactly the Texas of the human body, so it’s not like she forgot these holes were there.

She just didn’t think to take them into account.

Staging a Scientific Intervention

My surgeon did the first transplant operation on March 10—on my right eye, because my vision was worst in that eye.

The surgery I had is called DMEK—Descemet’s Membrane Endothelial Keratoplasty— the replacement of my endothelium-in-the-shitter and its Descemet’s membrane base with donor tissue. DMEK transplants have only a 1.9% percent rejection rate, due largely to the lack of “vascularization”—veins in the tissue. No veins, no rivers of blood for immunowarriors to travel down to attack the graft.

I was scheduled for a checkup with my surgeon two weeks afterward, and I went in prepared.

I had the science on steroids in my lap but I opened on the steroid-driven drama—telling her how close I’d come to dying of a traumatic brain injury. For the first time in my 61-year-old life, I’d fainted: dropped like a rock on my bathroom floor, inches away from my head turning into a smashed pumpkin on the cast-iron tub.

There were also serious heart effects, like my resting heart rate mimicking my “being chased by wild dogs” heart rate.

I presented my case for a prescription change: citing research on the harms of prednisolone acetate and the successful retention of transplants with alternative steroids and reminding her of my strong metabolic health. Translation: Extremely low bodily inflammation, reflecting a substantially decreased need for steroids to keep post-transplant inflammation down.

I asked her to switch me from noxious prednisolone acetate, with its strong systemic effects, to Lotemax ointment, a “softer steroid” with far less systemic distribution.

But before she could answer, I brought in backup.

Gotta Destroy Your Eye to Save Your Eye

Vitally, Lotemax ointment is preservative-free—and thus free of the pernicious effects of the destructive BAK preservative in prednisolone acetate (and most eye steroids and ocular antibiotics). This horrible stuff begins eroding the corneal epithelium in a matter of days, delays wound healing, worsens the uncomfortable and unhealthy “dry eye” I already suffer, and…LEADS TO CELL SHRINKAGE AND CELL DEATH!

This is information she should know! And not because some worried nerdy patient told her, probably halfway through her career as an eye surgeon specializing in corneal disease who constantly prescribes ocular steroids (and BAK-containing antibiotics like the one she prescribed me).

But, yes, the rather consequential harms of BAK preservatives appeared to be news to her.

I have to assume this—both from her response to me and because she seems to care deeply about me and her other patients. I can’t imagine her secretly wanting to destroy the eye parts she’s saving with her surgeries. (“Hah, hah...here’s some prescription cell death to throw in your peepers!”)

Pervasive Cluelessness

My surgeon’s obliviousness about the harms of preservatives in eye drops had company. Both my optometrist and another ophthalmologic surgeon had prescribed me preservative-laced eye drugs or drops.

I messaged the latter guy, a cataract surgeon who’d prescribed OTC hypertonicity saline eye drops to help decrease the fluid buildup from Fuchs. I was in their pharmacy, about to get the drops, when I saw they had preservatives—toxic parabens that, in a mere 24 hours, lead to cell shrinkage and cell death in the glands that make the oil in tears that keeps them from evaporating.

Could he please change the scrip to preservative free?

“Is there such a thing?” he messaged me.

Me, in my head: “I’M THE PATIENT! HOW THE FUCK SHOULD I KNOW?”

I dick around on the web trying to figure this out and call Kaiser’s 24-hour pharmacy and talk to a pharmacist. Unhelpful. I dick around more on the web. Turns out, yes, there’s preservative-free hypertonicity saline ointment. I order it off Amazon and then yell into the drapes:

“COULD I PLEASE NOT BE THE FUCKING MEDICAL ‘GENIUS’ IN EVERY FUCKING AREA OF MY MEDICAL CARE?”

Of course, I’m no genius—I’m the janitor, cleaning up doctor vomit: lazy, irresponsible myth-based beliefs harmful to my eyesight and ocular health!

The Moment of Medical Reckoning

I could see my surgeon was annoyed by my meddling, and it is not just gross literary hyperbole to say this filled me with brown clouds of terror.

I needed her to do my second transplant. Having her dislike and resent me would not be a positive state of affairs.

I muttered something appeasingly guilt-infused.

She was curt. “It’s your body!”

And that was that.

She typed in the prescription change for the Lotemax ointment.

More nervous mumbling from me, “Um, BAK, uh…offloxacin…but not moxifloxacin…”

More typing. She switched me from offloxacin, the BAK-laden antibacterial drop she’d prescribed, to moxifloxacin: the preservative-free, similarly-priced generic equivalent—which I informed her, per the research, has broader-spectrum protection!

Unfortunately, it was too late to change my medical fate.

Prednisolone made me terribly ill for three whole months and part of the fourth, probably due to my bordering-on-extraordinary metabolic health: extremely low inflammation, insulin sensitivity, a “quiet” immune system, and a quiet HPA axis (the hypothalamic-pituitary-adrenal axis that potentiates healthy and necessary cortisol release).

Malpractice by Rote

I had emphasized my strong metabolic health to my surgeon, because this is essential information for doctors to factor into your care—especially in the serious eye surgery arena.

However, in her field and in much of medicine, doctors too often treat each patient as if they are EveryPatient—some mythical “average patient” who does not actually exist—rather than doing the medically responsible thing and factoring in individual metabolic health and other individual patient metrics.

Accordingly, my surgeon had prescribed me what amounted to a huge overdose of prednisolone acetate: the 8-drops-a-day dose you might use as a “rescue steroid” for someone aggressively rejecting their transplant—or a very unhealthy patient with several inflammation-jacking conditions: diabetes, Lupus, obesity, atherosclerosis, and/or other immuno-taxing diseasemates.

In contrast, the field standard is 4 drops a day. And no, that’s not because researchers did the responsible science thing and tested 1 drop against 2 drops or 4 drops against 6 and, say, found 4 to be better.

The 4-drop dose, like way too much of our medical care, is based on clinical habit!—“We do this because we’ve done this!”—though doctors prescribing it believe it to be evidence-based.

As for the Double Stuf Oreo prescribing standard my surgeon seems to have applied, she appears to believe, “If 4 drops is good...8 drops must be better!”

This is—as politely as I can put it—SCIENTIFICALLY IDIOTIC!

Cluelessness-Driven Prescribing

There is no evidence that this 8-times-daily dosing is superior—or even warranted! In fact, such a huge blast of steroids would likely increase the risk and intensity of steroid-driven systemic damage and carnage in the eye or eyes getting the drops, including progressive destruction of the optic nerve and glaucoma!

I didn’t take the 8-drop dose long enough for that to happen.

But in me, it led to the delayed and highly compromised healing of my transplant.

And worse.

While it’s just an educated guess on my part, tests I’d gotten an endocrinologist to give me pointed to harm to the normal functioning of my HPA axis, which led to a four-month stint of unpleasant, scary, and harmful effects.

I suffered tachycardia—a dangerously high heartbeat—every day: 177 bpm while sitting still on my couch. 142 while standing by the receptionist with the bunnies backboard at my surgeon’s office. Less frequently, there was bradycardia, a dangerously low heartbeat (42 or 45 bpm), popping in like a parole officer for random visits.

I was also devastatingly weak. I normally lift weights every day, and not the little pink variety. I couldn’t hold my phone up for more than 15 or 20 seconds or make it through even the short cycle of my electric toothbrush.

My brain felt like a foreign object—like a doorstop filled with dying neurons. I was cognitively flattened, suffering unrelenting brain fog and all-day mental malaise that made the slightest effort at thinking seem like too much work.

I longed to escape my bricked brain with sleep, but, as they say, “There’s no rest for the medically fucked.” Every day, I suffered the physical effects of an all-day panic attack: hours and hours of heart-pounding discomfort—like from 8 a.m. to 2 or 4 or 5 p.m.—while my mind remained coolly rational as ever.

Doom With a View

I was seriously lucky.

That probably sounds crazy.

But for starters, I knew something was terribly wrong and I knew it was almost certainly due to being overdosed with steroids.

Unlike doctors and researchers, who are forced to narrowcast—specialize in a single area—I’ve immersed myself in the science across a number of disciplines.

In addition to understanding the systemic harms of corticosteroids like prednisolone acetate, I’m versed in the mechanics of stress and how stress hormones act in the body and brain; I understand the workings of the immune system and healthy and unhealthy inflammation; and I spent a year studying cognitive neuroscience and neurobiology to think out and write UNF*CKOLOGY.

My salad bar of scientific knowledge allowed me to drill down to the likely cause of my terrible symptoms: an HPA axis freakout from the steroid overdose, with normal healthy signaling and hormone release seriously out of whack.

This, in turn, pointed me to the “What do I do now?”—steps to take to stop the harm and heal from its effects (though there was a terrifying possibility I’d experience long-term or even lifetime persistence of these symptoms).

Poring over research on Fuchs, ocular steroids, and DMEK surgery and factoring in my extremely low levels of inflammation, I carefully calculated the applied science: how to protect the gift of a transplant I’d been given without harming or ruining my lifetime health.

The Lotemax ointment I had her switch me to is gooey, so stays in the eye rather than sliding right down the “pipe” like liquid drops do, and it kept my inflammation and eye pressure at a healthily low level, without the slightest sign of transplant rejection.

I applied other scientific judiciousness that I can’t reveal here, on both the first transplant and the second. What I can disclose is that upon my second transplant, at my checkup just seven days after my surgery, I was an ocular rock star: I had zero “anterior chamber inflammation,” a simply stellar intraocular pressure (IOP) reading of 10, and my surgeon said my transplant and eye, overall, “looked terrific.”

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We Should Be Patients, Not Prey

This harm I suffered can happen to any of us who are solely at the mercy of a doctor’s knowledge and beliefs—and this drives the medical and health content you’ll see in this newsletter. A good part of it will be how to avoid medical intervention through science I post on how we can be at our healthiest.

Medicine and Health

•I’ll identify the everyday unwitting malpractice of medicine by doctors in area after area of our care.

•I’ll lay out what the science actually says, note vital tests that doctors may not know to give, and explain how to get the evidence-based care we should be.

•I’ll cover compelling new findings in research as well as studies in the news that are scientifically and physiologically ludicrous.

•I’ll also debunk widely-held medical, nutritional, and Big Vitamin-serving myths—like “The Calcium Myth” that I take on in GOING MENOPOSTAL: What you (and your doctor) need to know about the real science of menopause and perimenopause.

Beyond Medicine: Love, Sex, Friendships, Healthy Conflict, and How To Be The Best You

This newsletter will also include my science-based advice on everything from your friendships and relationships to being and bringing your best self. My goal: Giving you a diving board to cannonball off into living your most productive, happy, loving, meaningful (and even fabulous!) best life

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