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!

Breakfast Break: MS Style (part 4 of Ms. Lab Rat’s Latest NIH Adventure)

When we last left off, I, Ms. Lab Rat, was sniffing the sickly scent of powdered sugar as I passed the by-now stale gingerbread houses on display in the secular cathedral that is the NIH (National Institutes of Health.) I had time to kill before my Phlebotomy appointment, so I took the elevator to the second floor cafeteria, which has an excellent salad bar. And discovered I was too early for salad.

Here’s the deal with my new Wahls-inspired MS diet: the foods I used to associate with breakfast are off the menu. No processed foods, no gluten, no grains, no milk (bye bye breakfast cereals,) no eggs, no cheese (bye bye omelets.)

Here is a picture of what breakfast looked like for me today: IMG_9271

You’re looking at bok choy and garlic escargot simmered in homemade chicken broth, topped with kimchi and dulce. The Wahls Diet calls for the consumption of four servings of leafy green veggies a day, at least four servings of colorful fruits and veggies, a meat, a touch of seaweed, a bit of something pickled. The Wahls Diet is also very very big on homemade bone broth. So this breakfast covers pretty much all the bases. (If I were a true purest, there would have been a little knob of organ meat floating around in the bowl, too. But that’s the thing about the Wahls diet. Or maybe any diet? You can always feel you’re not quite up to par.) This breakfast was yummy, by the way. But this kind of breakfast is not easily obtained on the road. Not even in a hospital. (By the way, what’s up with hospital food? Why are there so many unhealthy choices? Topic for another blog.)

Here’s a fuller, indeed cluttered picture of what breakfast looked like for me today, when I tell the whole complicated story of my MS maintenance:

IMG_9272

You are still looking at my pretty bowl of healthier-than-thou breakfast food. You are also looking at the supplements required for the clinical trial of the Wahls Diet:

5,000 IU Vitamin D3, 1 t cod liver oil, 5000 liquid vitamin B12, 1 mg folate, multi-vitamin.

Then there’s all the stuff I have to take for my funny bladder:

AZO, macrobid, and some other antibiotic I’ll be finished with at dinner.

Then all the stuff I choose to take for my self-designed Ms Lab Rat trial:

3x 100 mg Biotin (which I am hoping will eventually fix my bladder problems and get rid of three of the items above), 500 mg Hemp oil, local hemp oil, glorious hemp oil (which has helped me sleep and dream after many sleepscarce, dreamless years), 5 mg Lithium (which I thought was doing a fine job as a mood stabilizer, though I just learned that what I take isn’t anything like a mood stabilizing dose. So let’s call it my placebo.)

This is a lot to keep track of. When I graduated from the Swank Vs. Wahls clinical trial, I got a certificate (no joke) and a private viewing of a 20 minute video of Dr. Wahls that just served to delay the seven hour drive ahead of me. No t-shirt. The only remotely useful thing I left with was a booklet to help me keep up with all the details of living in a Wahls Diet world. (I had rallied hard for an app, but there isn’t one. Yet.)  For a few weeks afterward, I kept filling in little circles every time I popped another supplement, or finished another serving of leafy greens. But eventually I ditched the booklet. I want to feel a little less obsessive, a little less persnickety. Either that, or I’d already assimilated all the expectations. My brain had become the diet app I’d been asking for.

The morning of my TRAP trial, I realized I was not going to get a Wahls breakfast, or Wahls-ish breakfast before my blood draw. I guzzled a “green” drink I purchased from a vending machine and took the elevator down to Phlebotomy. A lovely woman handed me a white stub with a number. As I glanced down to read 32, she called, “Thirty two.” It was the Christmas holiday. I was the only patient in the waiting room. I filed past untouched trays of cookies and two pots of coffee and entered the orderly hive of numbered white cubicles, wondering if I’d recognize my phlebotomist. I had been there many times before.

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