Big News

I just got a call from Dr. A, the neurologist who follows me when I participate in clinical trials at the NIH. She is always a delightful conversationalist. This time, topics ranged from the music of poet Joy Harjo to the mindfulness meditation of Dan Harris to the benefits of exercise. She asked about my Covid-19 quarantine routine, which includes yoga, pilates, qigong, breath work, short walks—and cold showers. Dr. A is one of the toughest ladies I know. But even she didn’t warm to the notion of a cold shower. Instead, she deftly switched topics to the motive for her call — would I be interested in participating in a new NIH study on the effects of diet on MS?


Would I? Of course I would.


As long term readers of this blog already know, this diet study would not be my first rodeo. I had participated in a trial conducted by Dr. Wahls which compares the efficacy of her eponymous diet to that of The Swank Diet. If you have a grain of common sense, you will not be shocked to learn that I found her study to be biased. I joined it in good faith, expressed a willingness to be assigned to either diet, and pressed on when I was assigned the less desirable Swank Diet. I kept scrupulous record of every food I ate, down to the last teaspoon. The low fat Swank Diet may have helped many people with MS, but it didn’t help me. On the last day of the study, I broke my fast with an avocado. Yum! Fat! I’ve been back to eating fats—healthy fats—ever since.


As soon I had control of my own diet back, I switched to the Wahls Diet I’d been waiting for—and I found the recipes lacking. This was a few years ago; I know Dr. Wahls has been tinkering with her diet every day since then. At the time I felt like her focus was entirely on feeding the brain, and not on delighting the palate. I despaired of convincing my family to adopt the diet along with me. While gripped with anxiety about facing a lifetime of stoic meals, I stumbled on this happy website, which is run by two unpretentious women with five autoimmune diseases between them. They call their diet the AutoImmune Protocol (AIP), and that’s the diet my husband and I have merrily adopted. I asked Dr. A if I could remain on AIP throughout the study. She asked a few questions about it to determine if it could fit within the framework of the diet the NIH would want me to adopt. At this point, she thinks it could work. I’m certainly not willing to go back to a SAD Diet (Standard American Diet) to provide a before and after. I have learned my lesson and will never again martyr my diet for science. I will, however, happily chart my progress teaspoon by the teaspoon, if it will help others make well informed decisions about changes they can implement to optimize their immune system.


Diet should never be about cults of personality. An impartial government study of diet and immunity will be beneficial to all of us with multiple sclerosis, whether our current diet is Swank, Wahls, or the sweet, generic-brand AIP. A diet study came out earlier this month which shows AIP can change gene expression. That’s big news—proof that diagnosis isn’t destiny.

This new NIH diet study is not yet official; it is still just a twinkle in a researcher’s eye. It won’t happen if our researchers can’t find NIH study participants willing to document our food intake (tedious) and swab at least one poop sample (odious). But if I know my NIH researchers, and my fellow lab rats, we will be up for the challenge.


In my experience so far, diet adjustments can be arduous and imprecise and emotional and sadly not entirely curative. I see them as necessary, but not sufficient. A new diet study, if done well, can help all of us struggling through autoimmune disease to direct our efforts toward our best possible outcome, whatever that might be.

Gentle Reader, may you be happy. Stay well!

Why I’m not a “Wahls Warrior.”

This afternoon I got an email from Kathy Reagan Young, from the FUMS Podcast Show. 

She wrote: I’m preparing to interview Dr. Wahls about the Wahls Protocol vs. the Swank Diet and I wondered how you’re feeling now (after your gallbladder attack) and how you feel about the Wahls Protocol now?

This was my reply:

“I think the Swank Diet is an improvement on the Standard American Diet of mostly processed foods, but I suspect the lack of fats  does harm as well as good. My fatigue levels went up, not down, with Swank. When I turned to the study dietician for help on micro-tuning my diet so I could stay within Swank’s parameters, while remaining true to my goal of optimal health, she told me she’d have to check with Dr. Wahls first. When she got back to (me) she told me Dr. Wahls forbid her from making suggestions. My main motivation for joining the diet trial, instead of pursuing a diet independently, was to get coaching from the dietician. I suspect only those assigned the Wahls Diet got such coaching. This disparity is unethical in a clinical trial. If Dr. Wahls feels her diet can be proven objectively, she should have stayed away from having any say on the trial, and let it be proven independently. As that was going on, I got an email from Dr. Wahls promoting her daughter’s Go Fund Me site. I found that…distasteful.

Since the diet study, I have been following a modified, lower fat version of the Wahls Diet, reintroducing coconut oil and ghee very gradually, which is, I believe, what she herself (or her dietician)  would council. I wish I could tell you I’m feeling better already, but I am only a few weeks in. Last week I got hit with a diagnosis of severe osteoporosis, and on the same day I got told I had to get a second mammogram. I have a calcified lump on my breast that is getting biopsied tomorrow, so MS may turn out to be the least of my troubles. A good diet, a smart diet, is necessary, even if it’s not sufficient. We all die.
I believe Dr. Wahls has presented the world with a very smart diet. I also believe she is a flawed person. Just like you. Just like me.”
I’l be the first to admit that reply was a bit  melodramatic. I very much doubt I am going to die from this calcified lump. But I will die of something. And I will age. And likely, no matter how well I eat, no matter how hard I try to exercise, no matter how doctors I see, or clinical trials I  join…my MS will progress.

In her book, Dr. Wahls urges her Wahls Warriors to take a selfie before starting on her diet, so they can look back and see how they will “youthen” instead of age. I felt sorry for Dr. Wahls when I read that.  She, too, is going to age, she’s going to die…and she may very well progress. If she does, she’ll feel incredible pressure to hide it. I feel that pressure, every day, and I haven’t summoned a vast movement of “Lab Rat Warriors” to validate my dance with this disease. I’m sorry I’m being hard on her. She’d doing the best she can. I’m doing the best I can. I just refuse to be a Wahls Warrior.

 

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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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