Auto Immune Protocol

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!

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Flummoxed (Part 4 of 4)

My friend Monica also has MS. She does not medicate. Which is not to say she does not treat her MS. Monica chooses her activities carefully. She exercises every day. She chooses her food carefully, following a Wahls-like diet, or what some of us call an auto-immune protocol. (AIP) Monica is also an exceptionally kind and gentle—non-inflammatory—person. (Am I implying MS is an expression of a personality defect? I hope not. I’m just observing that it’s hard to create a spark without any friction. Every life has friction. Monica seems to have a talent for not creating any friction, herself.) Monica never tries to talk me into living medication-free. I never try to talk her into taking medication. (I might have made a recommendation to take Singular, an allergy drug that has been shown in the lab to transform the brains of old rats into brains that function like young rats. But that’s for another post.)

When Monica texted to ask what our neurologist had to say about my rash, I wrote, “Z says he will support my decision even if I stop taking FDA approved drugs. But it’s such a tough call. If I’m wrong, and I get an exacerbation, I’ll blame myself. If overheating on this drug gives me an exacerbation, I will also blame myself.” I was perhaps exaggerating  (or as we as say in my family of origin, ‘over-exaggerating’) when I texted about the perils of overheating. Overheating merely creates pseudo-exacerbations, or transient worsening that last until the MS host cools off. Pseudo-exacerbations sure feel like the real thing, but they don’t bring on permanent damage (as far as we know.)  You see how Monica and I are opposites? Even after years of daily work to mellow out, I still have a tremendous talent for creating friction out of thin air.

Monica texted, “Yes, it’s a tough decision. Think we should decide not to blame ourselves either way. I will always support you, wwld* :)”

*wwld is of course short-hand for what would Lisa do? Feel free to sprinkle this liberally all over the internet, like lesions on an MS MRI.

Note that when I texted that I’d decided to drop the Tecfidera, Monica didn’t text back, “told ‘ya so,” or “welcome to revolution against rapacious Big Pharma” or anything. The Lisa she knows is a much better person than Ms. Lab Rat.

Her sweet response was not at all surprising. I didn’t expect to get any guff from Monica. The guff, when I got it, came from an entirely unexpected quarter.