Lab Rat Plot Twist: Zinbryta Pulled Off The Market

I was on the line at the post office when one of my local MS doctors, Sandra Parawira, called to give me the news before I heard about it through the media.
Zinbryta, the MS drug that has staved off my MS attacks for the last 12 years, had just been pulled off the market. A few Zinbryta patients in Germany, and one in Spain, were found to have developed encephalitis. Sandra urged me to come into the office to visit with her on Wednesday. If her concerned tone of voice hadn’t done enough to convey the urgency of the situation, the immediacy of my next appointment in her busy practice surely did.
But was I worried? Not particularly. I have NPR to thank. On my drive to the post office, I’d been listening to an interview with a medical researcher on Science Friday. The researcher, Dr. Kang, was promoting a new book about “cures” throughout history that had done more harm than good. As I listened to Dr. Kang recount Marie Curie’s fondness for the radium which would later kill her, I’d idly wondered which of the drugs or supplements I was currently taking would later be exposed as a toxin. Five minutes later, I got the call that the drug I’ve credited for giving me my life back has been taken off the shelf.
While I have my doubts that a drug I’ve taken safely for 12 years was about to give me encephalitis, I am still seeing this change as an opportunity. Many new players have entered the MS landscape in the 12 years I’ve been on Zinbryta. Perhaps the drug I’m assigned next will improve my life as drastically as this one did.

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Gentle Reader,

Never forget that this blogger’s brain has shrunk to the size of a side dish of cauliflower. Lectorum admonere potent. Or, Reader, be warned. (Don’t feel insecure, bigger brained one, if you didn’t know the Latin. I didn’t, either, I had to look it up.)



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I got Swanked. Then I Wahled. Now I’m Galled.


When I started the trial to determine which diet was better for people with MS—Walhls or Swank—I’d promised the good people at the University of Iowa that I would not reveal which MS Diet I’d been assigned to until my participation in their clinical trial had ended. My contribution to trial has been completed. Drumroll, please.

I’d been assigned to the Swank Diet. For 36 weeks, I wrote a record of every morsel of food that passed through my lips. I ate no red meat, no avocado, no coconut in any form. No fats exceeding four teaspoons a day. I ate at least two servings of fruits and two of vegetables a day, as well as a minimum of four ounces of low fat protein, such as chicken breast. I drank no sodas, ate no sugars, no transfats, no deep fried food (OK, I cheated once and ate one half of the best falafel ball of my life.) I took the assigned five supplements: 1 tsp Carlson’s unsweetened cod liver oil, 5000 IU Vitamin D3, 1000mcg Methyl B12, 1000mcg Methyl Folate, and a Nature Made Multivitamin for Him 50+ ¯\_(ツ)_/¯.

I was to drink either skim milk (yech) or some milk substitute every day. After trying soy milk, then rejecting it based on scary stuff I read online, I moved on to rice milk, which I then rejected after reading more scary stuff online. I then turned to nut milks, which were a) yum and b) a little fatty…but by that time I’d lost more weight than the study wanted, so I’d hoped that would make drinking nut milk OK. I turned to the study nutritionist, who is supposed to help… but oddly enough, she deferred answering my nutrition questions until she’d checked with her boss, Dr. Wahls, who then expressly forbade her to guide me. Which led me to suspect… nothing nice. Dr. Wahls has a vested interest in the subjects given the Wahls Diet to succeed, and the Swank subjects to do poorly. Which is why I think it undermines the legitmacy of this very crucial study to have her at the helm. Well, Dr. Wahls, I did poorly.  Dr. Wahls calls those who follow her diet Wahls Warriors.  I guess I’ll consider myself a Wahls Martyr.

On my last study visit, the nutritionist asked me what advise I would give myself if I were just starting the study. I responded immediately. From my gut. I said, “Don’t do it.”

Aside from keeping track of what I ate every day, I had to keep track of my energy levels and my pain levels every day. My energy levels had gotten lower over the course of the study, and my pain levels remained fairly high.  The Swank Diet wasn’t right for me. It might have been a real improvement for another person with MS, someone who perhaps had weight to lose or had genuinely unhealthy habits to unlearn. But through thirty six weeks of deprivation of healthy fats, I’ve come to appreciate healthy fats all the more.

My first meal as a free woman was an avocado. I let bygones be bygones, and jumped right in to the Wahls Diet, diving right past level one to level 2/3. Thanksgiving came and went, and I ate (and abstained) as a Wahls Warrior should. Turkey? Yes! Organ meat? Yes! Good fats? Hell, yes. Neapolitan pizza and cannoli from New Haven’s renowned Wooster Street? No, thank you.

Was it worth it? It seemed like it. My energy level rose immediately. My pain level went down. I thought, This is the beginning of the rest of my life.

My new life lasted… ten days. The evening of Day Eleven, I got a fever. My side ached. Had I pulled a muscle in the gym? My whole body went cold. My fever worsened. I shivered. I called my primary care doctor the next morning. By the time I went in to see her, my fever was down. My side was still tender. Turned out, my white blood cell count was scary high.  My gallbladder scanned very clearly… and all they saw were some polyps.  My white blood cell count has since normalized, so I’ve opted for a wait-and-see approach instead of further scans. What did this incident mean? There are no clear answers yet. My gallbladder is still tender. My doctor has advised me to stay away from fats.

So for now, I’m on Wahls without the fun…I mean, the fat. Which is basically Swank plus organ meats plus seaweed. And no, I’m not chanting to myself, This is the beginning of the rest of my life. Though technically, it is.

Eat well, folks. Whatever that means for you. Stay healthy!



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Balance of Superpowers

Yesterday, my MS flared up out of nowhere.  That’s how I saw it, anyway, when out of the blue my legs just sank from beneath me. What an insult! I kept saying,”This is so surprising.”

My husband was unflappable. Finally he said, “This is not a surprise. You have MS.”

You would think, twenty three years after the diagnosis,  I wouldn’t need to be told I have multiple sclerosis. But it does still surprise me. I haven’t had my legs drop out from beneath me in months. I’d kind of hoped maybe that symptom would remain in the past.

While I depend utterly on my husband’s acceptance of my MS, I depend equally on my own stubborn denial to ensure I live my fullest life. Denial may be my greatest superpower. Acceptance may be his.

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It’s a Small World


While at the refugee potluck, my husband and I met two guys from the Congo who like to play soccer. One Syrian mom and all six of her children. A Cincinnati lady who specializes in refugee stress reduction through drumming and art. A professor who happened to have taught at Macalester College, our alma mater. “Small world,” we said. Two young doctors in town for a conference on pediatric medicine, from Toronto and Long Island, respectively, who had wound up here by searching the net to see what cool things Cincinnatians might do on a Thursday night. Turns out, the doctors specialized in  auto-immune disease in children. When I mentioned I had MS, the Long Island doc told me her best friend was newly diagnosed with the disease. “Small world.”

For years when I’d meet someone who told me they had a loved one with MS,  I used to ask, “How is your best friend/uncle/brother/mother doing?” I don’t know why it took me  a long time to realize that I would never get an uplifting answer to this question. But it did, it took me years to stop expecting something more hopeful than,  “pretty bad, worse than you, confined to bed, dead.”

Recently I’ve started trying out a new go-to answer. I’ve learned say, super solemnly, “I am so sorry.” And damn, not one person yet has said, “Oh, it’s not that bad.”

The young doc said her friend was doing everything right: diet, exercise, meditation. And her friend was pretty depressed. No matter how virtuous she was, the MS did not go away. I might have said what I always want to hear, “Oh, I’ve had MS for over twenty five years, and I’ve managed. It’s not that bad.” But underneath, I had to agree. I, too, was doing everything right, I had love, good food, swimming, pilates, yoga. And I too, was frustrated that my MS has not gone away. MS is bad. It’s just bad. I didn’t give the doc my card, or tell her about my blog. I didn’t feel like I had any super inspirational advice for her friend.

And yet. We were sitting in this vast room, full of happy people of all ages, from all over the world, who were here because of an idea I’d had. And that’s all  I had contributed—an idea (plus a tub of broiled vegetables plus a salad)—the Clifton Cultural Arts Center and Catholic Charities, and every single person in that room, had done all the rest. We followed the very easy tried and true guidelines set up by Anyone can follow them. Even a person who still can’t mangage to outsmart MS.  You, too, can gather a bunch of random people together, and find you share the same pleasures. And the same struggles. It’s a small world.

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Community Potluck

A few months back, my family and I were eating really crazy delicious food at a local café. When we learned the cook was a Syrian refugee, I wanted to know more about her story, starting with: how did you make this food taste so good.? I started to wonder what it must be like to be a refugee, and then I started to wonder why there are so few opportunities to really get to know my neighbors. So I turned to my local Cultural Arts Center, and asked them if they wanted to do something cultural. We checked out the Refugees Welcome to Dinner Project. Clifton Cultural Arts Center took it from there.

Clifton Cultural Arts Center will be holding a free potuck dinner for members of our community, old and new (and middle-aged like me)  from 6-8 pm on October 19. I am so glad we will all get the opportunity to share a meal together.

And yes, my contribution to the potluck will align with my MS Diet. No cheating!

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What Would Lisa Do?

When I enrolled in a study comparing the efficacy of the Wahls Diet to the Swank Diet in reducing fatigue in MS patients, I agreed to the following:

Item 1: I would hold off on any food not on my randomly assigned diet, while documenting every meal and morsel that passed through my lips. (And every bowel movement that passed elsewhere. Note how I choose to modestly tuck this admission into parenthesis, as though to hide it.)

Item 2: I would hold off on making any changes beyond the diet: no new exercise routines, no new medications, no new supplements. (This element worried me from the start. To have multiple sclerosis is to be on constant alert as to what works, and what hurts, and to adjust accordingly.)

Item 3: I would hold off on writing about the study until after my participation was complete. (I was told: “You can still take notes.” This riled me. How dare anyone presume I would grant them the power to prevent my taking notes? Still, I’ve held off on blogging about the study. Until now.)

As the study continued, I’ve been ceaselessly repeating my end date to myself like a convict scratching out roman numerals on a cell wall: November 14, November 14, X1 X1V.

It’s not that I’ve been worried about my ability to stick with an MS diet. I have all the motivation imaginable: I have zero desire to feed the disease that has riddled me with suffering.

At this very moment, I am sitting in a lovely urban café with my gorgeous husband, pristine sunlight streaming through the floor to ceiling windows, mellow trumpet streaming through overheard snippets of conversation about…a study on epilepsy (disease is ever present in our culture.) My husband’s almond croissant looks esthetically appealing, but it does not spark my appetite. It might as well be a croissant in an oil painting.

It occurs to me that growing up poor may have primed my willpower. I have always divided the temptations of this world into that which I can afford, and that which I cannot. As I have always been able to afford library books, hugs, conversation, trees, and sky, I have never felt privation while all sorts of shiny things— luxury cars, diamonds—sparkle out of focus as they pass me by. To be on an MS diet is to acknowledge that I cannot afford an almond croissant. But as it happens, I haven’t felt privation. I have a neighborhood grocery store around the corner full of fresh, healthy food—and a husband who is an amazing cook, capable of spinning delicious meals out of any assortment of options. (I’m a capable cook, myself. Just not a brilliant one, like he is.) Holding off food outside the diet has not been difficult; it’s been like holding off on invitations to disease. Easy scheamsy.

So much for Item 1.

I had thought, (too optimistically, in retrospect) that because I have an iron will, because I would follow any MS diet I was given to the letter, I would be rewarded with a respite from disease. This has not been the case. I’m not saying the sacrifices I’ve made in my diet have not been necessary—I believe they are. I am saying they have not been sufficient. The fact is, my diet before the study wasn’t all that different. Or at any rate, not different enough for me to experience any last life changes.

While an MRI I got from the NIH this spring did not reveal any new lesions…I was informed by voicemail that the game has changed. I am no longer being categorized as relapsing/remitting, but as secondary progressive. The damage in this phase of the disease process is more subtle that any lesion glowing on an MRI. But I can feel it.

Adhering to Item 2—holding off on changes to exercise, medication, and supplements—has meant continuing to allow my condition to further degenerate. And yet…I held off on any changes, as agreed, for weeks and weeks and weeks. I continued to make my healthy food choices. I filled in the bubbles in my diet record. I swallowed my assigned supplements. And I ceaselessly reminded myself I would be free to try something new on November 14, November 14, X1 1V.

All the while, there has been this one supplement I’ve been drawn to in particular: Biotin. There had been a promising study in France, which showed 300MG of Biotin daily had reversed symptoms in people with progressive forms of MS. Since starting the diet study, I’d joined an online group of people following the diet to which I was assigned. Many of them had started taking 300MG Biotin, and their first-hand reports of symptom reversal kept showing up on my feed. In my mind, Biotin was becoming something I could not afford—to be without. I mentioned this at my neurology appointment last week, and was in shock when the vivacious newcomer to my healthcare team handed me a prescription. Hadn’t she heard I couldn’t take a new medication until November? Maybe she thought—maybe I should think—I could not afford to wait.

In retrospect, my continued indecision seems almost comical. I talked to my husband. I talked to my mother. I texted a sister. I felt it would be wrong to drop out of the study. The investigators had invested so much. I’d invested so much. Over the years, participating in clinical trials has become my identity. Or one of my identities. I was Ms. Lab Rat, wasn’t I? Who was Ms. Lab Rat to jump out of the maze?

But losing my alter-ego was the least of my concerns—my health was at stake. My health had to take priority. Which was why I’d become a Lab Rat in the first place.

One of my interlocutors suggested that I just take the 300MG Biotin, and not report it. That would be easy enough. I’d learned, through the Biotin grapevine, that if one held off ten days before bloodwork, the supplement would not be detected. This option did not appeal to me. What was the point of doing any study if it didn’t give real people with real MS real answers? If I didn’t report honestly, I’d be negating all the work I had done so far. The study would be worth nothing.

A friend of mine tells me that, when faced with a difficult decision, she asks herself, What Would Lisa Do?

I tried to imagine myself as the sage friend she sees in me. I asked myself, if our situations were reversed, what council I would give her? What Would Lisa Do?

Lisa wouldn’t hesitate to tell her to drop the study and do whatever she thought she needed to do to take care of herself.

But did I drop the study? Not so fast. I wondered if there was maybe a way I could stay in the study and take care of myself. One of the advertised perks of being in the study is that you have access to a dietician. I emailed the dietition, asking for a pep talk. “This diet is not working for me.”

It wasn’t just the diet that wasn’t working. Zinbryta, the drug that radically improved my quality of life for over ten years, now seemed to be responsible for my having a decreased ability to heal. (I have had the same skinned knee for four and a half months. It’s kind of eerie.)

I wrote, “I need to get more assertive in my treatment, and just can’t wait until November 11 … To stay in place is to decline, and I just can’t continue to harm myself in this way.”

Since the dietician has had access to my food records, I was hoping she might be able to detect some tactical error I’d been making, and would write back with a suggestion of some simple dietary change I could make that would change everything. Something like: replace soymilk with cashew milk and you will live healthily ever after.

That didn’t happen.

So when the dietician called on Friday, I announced, “It’s with a heavy heart that I have to give up this study. I’ve been given a prescription for high dose Biotin, and I’ve decided it wouldn’t be right to delay getting it filled.”

Unbeknownst to me, my announcement contained a magic word.


If I’d been paying more attention to our agreement, I would have remembered that the study does allows one to make modifications to medications or supplements…prescribed by a physician.

I could, in fact, take my Biotin and continue on the study diet, too.

Back when I was discussing my conundrum with my mother, she’d said, “You are just like me. You care too much about pleasing other people and about being a good girl.”

Then there had been a long pause. We both knew, from a lifetime of experience, that I have never cared a whit about being pleasing other people or about being a good girl.

Here’s the latest proof: in writing this blog post, I have violated Item 3. I have not held off on writing about the diet study.

And now, I am excited to announce that I am launching my own study. On my own terms. I will try out 300 MG Biotin per day. And I will write about it as much as I please.


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