Recovering from a Life-Altering Event, a Complicated Cholesterol Picture Emerges
In 2016 my wife suffered a grand mal seizure — a “generalized tonic clonic” in medical jargon — a surge of abnormal electrical activity throughout her brain. We suspect an infection the previous summer triggered an autoimmune process that went rogue. We’ll never know for sure.
Our first warning was a migraine-like headache in January 2016. An unusual event for a woman in her mid-40’s with no pre-existing condition, we later learn. We ignore the first. A week later another followed. The next week a third.
“Keep calling until they call you back.”
In the months that followed the intervals shortened until these “migraines” — healthcare’s diagnosis, for a while - were almost daily. Multiple ER visits, follow-up doctor appointments and drug combinations would not make them go away. Her condition deteriorating, by May our hope was simply to finish each day without an “event.”
By June her body had had enough. Her head now hurting continuously, a scary, passive confusion began to creep in, extinguishing her once vibrant personality. Unable to remember how to operate the TV remote, she would spend the last few days sitting in front of a blank screen, perhaps mercifully unaware of her rapidly declining condition.
After months of watching her deteriorate, succumbing to a process unmoved by all our efforts, I was afraid of what would come next. Desperate, I called her GP on a Saturday morning, a call I placed after a kick in the pants by a friend (“get angry,” my friend’s advice). Unfazed by the weekend interruption on her cell phone, my wife’s GP urged me to call to the hospital operator line and ask that the neurologist on duty be paged. “Keep calling until they call you back,” she said.
The neurologist did and, suspicious my wife had something other than a migraine, asked that we meet her in the ER. Later making “an executive decision,” she had us admitted to the hospital for overnight evaluation and more tests. Another brain scan (MRI) a few hours later would finally capture the brain inflammation we long suspected.
But before a radiologist could review these images, and minutes after being wheeled back to her room, my wife succumbed. Her mind seized. Watching her writhe in the aftermath, I no longer recognized her. The person I brought to the ER a few hours earlier was gone, at least temporarily. Guilty for allowing the condition to progress this far, and powerless to influence its course, I asked her nurse what I should do now. “Hold her hand,” she said.
The days that followed would be the longest of my adult life. However, after dozens of tests and many medications, and under the continuous care of health care professionals, she began to recover. We were discharged in under a week.
Ultimately diagnosed with Hashimoto’s Encephalopathy (“HE”), a rare autoimmune-induced brain inflammation, HE is thought related to a very common autoimmune condition, Hashimoto’s Thyroiditis (“HT”). Tens of millions of Americans will develop an autoimmune condition, and HT is one of the most common. While doctors could not tell us what happened or why, cautiously optimistic, they thought she could make a full recovery. She did.
Her recovery medications “had issues,” we were warned.
Perhaps not surprisingly, after the months of physical and emotional strain leading up to the seizure, and now living in the shadow of a potential relapse, recovery became our one and only priority. We wanted to know what additional steps we could take — might there be other recommendations beyond a year-long course of anti-inflammation and anti-seizure drugs? Her recovery medications “had issues,” we were warned. Could we minimize their potential side effects?
At our first follow-up my wife asked. Her new neurologist, the chairman of the neurology department at the hospital-medical school, suggested an anti-autoimmune diet book, the “Wahl’s Protocol,” by Dr. Terry Wahls. He sees many patients with autoimmune and neurological conditions, he said, and thought this book, written by an autoimmune patient, would be a great place to start.
The book’s guidance would be familiar to many — lots and lots of vegetables, particularly green ones, berries, clean meats and fats. I started shopping before I finished the third chapter. The effects were almost as immediate.
Watching her walk through the door three weeks later, the neurologist knew what she was doing. Rather than gain the expected 15 pounds from the steroids and sporting a “moon” face, she lost that much. He was ecstatic — “if you can continue this lifestyle there are many more conditions you don’t know about, but I see routinely, you will avoid later in life.”
Hoping to put this period behind us, we have followed his counsel since.
But What’s Going On, You Know, Inside?
Curious about the impact of this lifestyle shift, I began testing my blood, and later, hers. We don’t eat identical meals, of course, and over the following year I had become a bit smug about my stricter adherence to “her” diet. That is, until the first lab tests came back.
My cholesterol blew up, skyrocketed, and comically so. I thought something was wrong, maybe a lab mistake, an error in sample tagging.
Routinely 140–150 before the change, my first result was over 260. For perspective, this number is one which triggers an automatic prescription for cholesterol lowering medications (i.e. statins) from just about any doctor. Using the more comprehensive Nuclear Magnetic Resonance (NMR) cholesterol test my measured level was well over 2,000. Regardless of the protocol each successive lab test came back with a number circled in red.
Yet I felt great. I had never eaten better, and, despite a lifetime of regular exercise, this revised diet of arugula, Brussels Sprouts and salmon revealed tone I hadn’t ever seen. But tests penetrate the surface, taking note of processes the body’s owner can’t see or feel. I owned a microscope as a kid. I know another world exists beyond the naked eye. Moreover, this world — specifically, our microbiome- is thought to influence much of how we feel and respond, and perhaps even think.
Discouraged by my initial lab work, I dug into popular doctor-authored health books to learn more this new food regimen. While I never found a discussion of results similar to mine (update — I have, see part 2), more than a few authors suggested cholesterol is poorly understood, and some hinted science may recommend a minimum cholesterol count to support brain health in the not too distant future. [I ultimately found and joined a FB group dedicated to cholesterol and a ketogenic lifestyle, which tracks and reports individual user responses. There I learned my results are not uncommon]
I probably wouldn’t be bothered cholesterol in the slightest were it not for the cultural significance.
Now two more years have passed and I continue to experiment. If I’ve noticed a comforting trend it is that my LDL cholesterol is getting larger, fluffier, a “Pattern A” look on the NMR test. This is a good development, apparently, but with other numbers high, I’ve kept my enthusiasm in check.
More broadly, these last few years have left me wondering what lies ahead, how nutrition guidance and health recommendations will evolve as we attempt to solve for particularly unnerving end of life conditions, such as Alzheimers and dementia. Food, lifestyle, genetics and other environmental factors will all play a role, of course, but I expect stubborn resistance to a handful of broad questions:
- How much control do we have?
- How much food and lifestyle intervention is required? Starting when?
- What should we be testing along the way? Who will recommend and oversee this?
- Once identified, can damage be undone?
I don’t know the answers, of course, but I’m increasingly wary of conventional wisdom. “Let food be thy medicine and medicine be thy food,” would seem just as relevant today, perhaps even more so in an age of prepared foods, laboratory tested for taste and packaged for convenience and cost. In the meantime I’m losing faith in a cholesterol number I grew up with. I eat better, feel better, and rarely get sniffles, much less sick. I probably wouldn’t be bothered by cholesterol in the slightest were it not for today’s cultural significance.
Still, I’ll have to practice ignoring red circles I don’t understand — nor, possibly, do others — and learn to trust my own body’s signals. Curiously, this may not be unlike our ancestors who predated industrialized food, and, shortly thereafter, industrialized medicine.
For those curious and interested in obtaining their own results, Health Testing Centers (“HTC”) offers a range of consumer direct tests such as allergy, cholesterol, kidney, hormones, liver function, thyroid function and more. HTC works with LabCorp, Quest Diagnostics as well as other testing companies to offer a wide range of lab-based and in-home tests.
Aaron Benway, CFP, EA
Aaron is a Certified Financial Planner (CFP) and IRS Enrolled Agent (EA). He co-founded HSA Coach, a digital tool to educate consumers on HSAs, track health expenses and other documents, and provide individual financial calculators, to help consumers get the most from their HSA and other savings. To help individuals directly with financial planning and wealth management he started AB Financial Planning. Prior to co-founding HSA Coach, Aaron was the CFO of ventured backed fintech startup HelloWallet, acquired by Morningstar. Aaron has an MBA from Harvard Business School and holds an electrical engineering degree from the US Naval Academy.