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In search of plan B

March 14, 2015

This article is written by TurnFirst founder Samantha Guerry.

I’ve been experimenting with “food as medicine” for a long time: 18 years to be exact.  I was diagnosed with MS in 1992—a year when I was at the beginning of everything: marriage, career, and family.  At that time, there was no Internet to search, no treatments to try, no steady stream of new research to buoy my hopes of a cure.  There was just an “I’m sorry” from the doctor and the slow drip of steroid infusions to quell the inflammation of exacerbations.  With nothing to do, we just waited and hoped for the best.  That was the plan anyway, the only plan my doctor offered.  We’ll call it Plan A.

For a few years, you couldn’t tell from looking at me that there was anything amiss.  My symptoms were mild: a little numbness here and there and a vague sense of leg weakness when I was tired.  I could still climb mountains, but the whole way I felt like I was walking in waist deep water. I just kept to “the plan” –it was easy enough to do—and I soldiered on.

Four years later, when I was pregnant, Plan A stopped working for me.  As my stomach grew, my legs weakened and by six months my right leg and ankle no longer supported me properly.  I lumbered along huge, off balance, and terrified.  

At that point I began to alternate between reading “What to Expect When You’re Expecting” and every bit of MS literature I could get my hands on, which frankly wasn’t much.  By then, the “disease modifying drugs” (such as Avonex and Copaxone) were just coming online, but as a pregnant (and then nursing) mother, I couldn’t take them. After my son was born, I was pumped full of Prednisone and resumed Plan A.  What made the plan tolerable was my body’s miraculous ability to heal.  Slowly but steadily, a period of recovery followed that exacerbation. Denial returned as the sentinel of hope and I appeared “normal” again. 

But it didn’t last long.  In 1997, an MS lesion developed in my neck and began to shut down the flow of information from my brain to my left side. Every night something went missing and I woke up dreading the absence of some vital part of myself.  Once paralyzed on my left, I began, ever so gradually, to lose sensation in my right foot, and I braced for the worst.  Over the course of a month, my daily life slipped away from me.  I lost the ability to walk, write, type, brush my hair, climb stairs, carry my baby, and find things in my pockets.  Taking a shower was exhausting.  At that point, with the vestiges of strength left in me, I violently swept Plan A off the table. 

Plan B began with a new doctor: Dr. Carlo Tornatore (now the Director of the MS Center at Georgetown University Medical Center).  He was compassionate, willing to be aggressive, respected my need to try alternatives, and answered my questions on research clearly and thoughtfully.  He convinced me to begin taking Copaxone, which was no small feat given it required that I give myself shots daily, often in the stomach. The medications are well vetted and promise clinically proven reductions in the number of exacerbations.  Some, when started early, even seem to minimize the long-term effects of the disease by providing neuroprotection. But the available medicine is not a cure. The fact that we still don’t know what causes MS greatly confuses everything and makes conversations on treatments chronically waiver on the edge of the absurd. We know just enough to make educated guesses about what might be helpful, but not enough to say for sure. The research shows that something in our environment conspires to cause MS. That component may be elusive because it’s probably not one thing. It’s likely there are multiple environmental influences, any number of which trigger an autoimmune response that leads to MS. When we talk about environment we’re talking about two things: what goes in our bodies and the mental effects of our lifestyle.

So adopting a nutritious diet in concert with MS-specific medications just made sense—after all, we are what we eat. Plus, it was something I could do for myself. Dr. T understood that I desperately needed a protocol that was within my control, but even more importantly, that having a sense of control, however illusory, gave me hope that I could change the course of the disease itself.  So with his support, I went in search of a holistic nutritional plan to complement my daily injections of Copaxone. 

I realized almost immediately that I couldn’t create a medically relevant diet on my own.  I needed an expert not just to establish the plan, but also to explain it to me.  Having a clear understanding of what I was doing and why was my only hope of sticking to it.  So in 1997, I expanded my medical team and reached out to a prominent naturopath, Dr. William Mitchell, who had a keen interest in autoimmune diseases and MS in particular.  He put me on a diet with a long list of “no’s” and an equally long list of supplements.  It was designed to remove all the common allergens from my diet, stabilize my blood sugar, and quell my systemic inflammation.  For over a year I avoided gluten, every white food imaginable, nightshade vegetables, everything sweet, and anything made from corn.  I took bioflavonoids, Quercitin, licorice root, and Cod Liver Oil.  I was very disciplined, determined, and hopeful.

It worked.  Taken together, the treatments, diet, and physical therapy returned me to a picture of health.  Even Dr. T thought it was a miraculous recovery. I was skiing within the year.  If nothing else, it proved to me that my body could heal.  With the right program of care, it was possible for me to recover what I lost from my MS attacks—maybe not everything, but I could recover a lot.  Recovery was worth fighting for.

Based on that initial victory, I’ve stayed with some form of Dr. Mitchell’s diet ever since, but not with the same rigor, nor the extensive supplementation.  It was just too hard to maintain while working full time, raising a child, going to graduate school, traveling, and going out with friends. When you’re feeling good, it’s too easy to slip back into old habits and revert to the Standard American Diet (aptly known as SAD.)  It also happens to be the only diet available 90% of the time. When I’m traveling, for example, I often am stuck between going hungry and eating off my diet.  The truth is that we think we will do anything to save our health, but over time the extraordinary requirements become onerous and the daily demands become tedious.  When I felt good, I thought that maybe I didn’t need the diet anymore.  When I was headed into a new exacerbation I was plagued with doubts about the potential efficacy of the diet and prone to comfort myself with food that was most assuredly not on the protocol. (Is it denial or sagacity to doubt that Ben& Jerry’s New York Super Fudge Chunk is the enemy?)

The bottom line is that Plan B requires a heck of a lot of work. Nowadays, the work is easier since everyone seems to be on some kind of special diet and there are massively more options available at even mainline grocery stores.  But in those days, we didn’t have a Whole Foods on every corner, so I had to make everything myself. And then, of course, my family wanted their mashed potatoes and tortellini.  So, it was hard to be juggling multiple requirements along with a full time job and life.

I admit it. I waivered.  But I never abandoned the conviction that diet matters and has the potential to prevent illness and facilitate healing.  I keep trying, keep learning, and keep working on the plan. My MS has progressed, but it’s been 23 years now and I’m still on my feet.  Plan B hasn’t been a cure.  I have accumulated disabilities along the way.  I walk with a cane.  I use a wheelchair from time to time when I need it.  But I’ll tell you what a cop once told me who had come to do a security evaluation on my house.  He said, “You never know what crime you prevent.”  This is true about nutrition too.  By eating a wholesome diet that meets your nutritional needs, reduces inflammation, and keeps your systems running smoothly, you may not produce a miracle but you may be preventing more serious problems.  And that’s why I’m sticking with Plan B.

Samantha Guerry has lived with MS for over 20 years.  She is an MS advocate and educator and the founder of the TurnFirst Foundation (turnfirst.org).  TurnFirst supports the newly diagnosed and their families to help them be better prepared to take on the physical and emotional challenges of MS, advocate for themselves, and set a course to lead fulfilling and productive lives.

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