Addicted to Trials (Part 1 of Ms. Lab Rat’s Latest NIH Adventure)

My name is Ms. Lab Rat. I have multiple sclerosis. I am addicted to clinical trials.

It had been 32 days since I’d finished my last clinical trial in Iowa City when I slipped out of a white van on a cold December morning and surrendered my coat and my purse to the jocular security crew at The National Institutes of Health in Baltimore, Maryland. When asked by a cheerful ex-navy, “Have you been here before?” I had to smile back. I’m terrible with numbers, but by my feeble estimation, I’d been to the NIH 44 times before: once a month for three years during the trial for Zinbryta, once every six months for the three years it took for the FDA to approve Zinbryta, plus twice for initial trial visits. Gentle reader, chances are your brain is less riddled with lesions than mine. You do the math. Numbers aside, I think we can all agree; I’ve been a regular.

Back when I started the Zinbryta trial, when the drug was still fairly new to me, my life had been much more limited by my disease. I was a regular at my drug store, a regular at the places I volunteered. No one paid me to hang around. Zinbryta stopped the raging inflammation that had peppered my brain with lesions. My relapsing remitting multiple sclerosis stopped feeling so…unremitting. And gradually, I was able to get small but super-meaningful jobs. First I was hired to host creative writing sessions with a uniquely brilliant group living at an upscale assisted living center. I am in awe of the supportive creative community we have maintained. Then I was hired to teach writing classes to radical, relentless, radiant young artists at a celebrated arts college downtown. The younger generation fills me with hope for a more just, more equitable, more dazzling future. Through the years, I have maintained the same prolific community writing workshop. We all publish. Some of us publish quite a lot. Zinbryta has allowed me to expand my identity beyond MS patient, to teacher. When the security guard handed me my one-day NIH ID, you’d better believe I thanked her.

I hopped back into the white van with a couple from Georgia. The husband had spent the trip describing the career he’d had to abandon. “I want to get back to work, do what I can from a wheelchair. But first I’ve got to get this cancer under control.”

I could relate to his frustration. I could relate to his hope. Zinbryta has helped rein in my MS. It’s been necessary. But it hasn’t been sufficient. When we reached good old Building 10, I hopped out of the van. I was eager to get my MS under control.

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Disclaimer

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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