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!

People with MS Have An Important Role to Play in The Great Big COVID-19 Experiment.

Knowledge is power. The more we know about COVID-19, the more powerful we will be. This is why we spend eight to twelve hours a day checking our iPhones.. .to possibly learn twenty two seconds worth of relevant information that might SAVE OUR VERY LIVES. Or, at any rate, to learn another snippet about “The Tiger King.”

I thought I’d pass along a bit of relevant information I’ve gleaned , because it concerns my peeps, the folks with MS. Gentle Readers without MS…stay with me. I’ll be passing along a few bits of relevant information for you, too.

I’ve been taking the threat of COVID-19 extra seriously because I’m in that subgroup that’s supposed to be afraid… very afraid: I am one of the Immune Compromised. Like many of the insured with MS, I’ve been taking very expensive medication that I’ve since read may have made me fractionally more immune compromised in the face of COVID-19. Had I been on a more effective MS medication, I may have been significantly more immune compromised. So I guess I’m glad I was on a dud of a medication? Mostly, I feel those of us with MS and medical insurance have been played for suckers to generate profits.

Anyway, I’m off my meds. Good riddance. Except. I am now experiencing weird visual symptoms that may (or may not) have been prevented had I continued with my lame MS drug. There is no way to know if I’m having a relapse without going to a doctor, and who wants to do that? I don’t have a control-group-twin sister who is still on Tecfidera.

Yesterday I read about a tool more ethical than a control-group twin sister— a global initiative that is amassing data to help people with MS and other demyelinating diseases of the central nervous system to make more informed decisions about our risks related to COVID-19. It’s a database called COViMS.

We neuro-compromised don’t have to do much to participate in this database. We just have to a) catch COVID-19, b) get tested (good luck with that!) and c) tell our doctors to use this link to fill out a brief report, though “only after a minimum of 7 days and sufficient time has passed to observe the disease…through resolution of acute illness or death.”

The form takes ten minutes to fill out, but that’s not our problem; that’s our doctor’s problem. We will either be recovered or dead.

I am always looking for a way to be useful after I am dead. (I’m not too keen on being useful during this all-too-brief period before I am dead.) For years, I’ve been wanting my dead body turned into some form of compost. Seriously, that would be a dream come true. But if that dream is not to be, having my COVID-19 struggle recorded in a searchable database will have to do.

There is, however, a small but distinct possibility that my COVID-19 struggle has already come and gone and is only now getting documented in this very small database known as my blog. I was wrapping up a session of qi gong in our back yard during an unseasonably warm and sunny day when I suddenly experienced an acute pain in my lungs. It felt like I’d inhaled asbestos mixed with the smoke from a thousand cigarettes mixed with a thousand tiny daggers. There had been a brief regrettable period in my youth when I was a two and a half pack a day smoker. My lungs felt worse than they did then. And felt worse than they did through my childhood bouts of pneumonia. There was no database to consult about my chances of surviving COVID-19. As far as I knew, being Immune Compromised meant I was about to be a goner.

Operating under this speculation, I did a few embarrassing things.

I received a text from a friend of mine, who was anticipating the arrival of three grown children from New York. She had just discovered the toilet paper shortage was real. I replied by bequeathing her our precious Costco sized trove of toilet paper, without checking in with my husband first.

I then texted my son that I was proud of him. Or that I loved him. Or that he should do good in the world. Something that could have raised an alarm.

I then called my parents. They told me to hang up and call a doctor. So I hung up and tried for a telemedicine consult through my insurance company. In order to qualify for a telemedicine consult, I had to fill out a brief questionnaire about my health status and symptoms. The questionnaire asked if I were immune compromised. I was immediately patched through.

The doctor on the other end of the telemedicine consult was a young woman who looked and sounded ten times sicker than I felt. As she asked me questions, her toddler toddled into the background, asking questions of her invisible patient in her private toddler language. The doctor informed me that I would not qualify for the COVID-19 tests in my area. She advised me to get some rest. She told me that I was breathing more freely than a patient she’d be concerned about. Feel better, she said. Feel better, I said. The toddler said something in her private toddler language. The exchange cheered me up.

I realized that even though I have MS, and had inexplicably burning lungs, that didn’t necessarily mean I had COVID-19. And even if I did have COVID-19, it was not necessarily inevitable that I was about to die. Maybe there was a chance I could live through COVID-19. At the time, there was no database to consult. Instead, I grated ginger into my tea and I rubbed tea tree oil onto my chest and I did a round of qi gong with Jeff Chand on You Tube and I consulted with my body and my breath. Within a few hours, I was updating my parents that my lungs had stopped hurting so badly. I received a text that my friend would not be needing my toilet paper, after all. I received no reply whatsoever to my text to my son; clearly, I had not freaked him out.

I went to bed with my lungs aching, but not too badly. I woke up barely feeling my lungs at all. In the two weeks since then, I’ve had one other inexplicable scare wherein my lungs hurt severely for a few hours, but mostly, my lungs have been serving me quite well. How well? A few of my college friends talked me into trying Wim Hof’s guided breath meditation on YouTube. I learned I can hold my breath for two minutes, a super-power I would have loved to have known I was capable of back in 1972 or so, when I was watching a Batman and Robin episode in which the daring duo was trapped in a room with rising water. There isn’t much we can control during this COVID-19 crisis; controlling the breath has become ever more appealing.

My friend Monica also has MS and has also had a COVID-19 scare, although we didn’t know it at the time. She announced her symptoms as we sat in a sun-drenched lobby that looked like it belonged to an upscale hotel and not a Neuroscience Center. We’d all just finished what I announced would be my final MS yoga class for the nonce…I was at that point feeling a bit apologetic about my freakish instance that COVID-19 could be on its way. Our friend Kim was sipping the kale and blueberry smoothie we’d recommended. Monica had abstained from ordering a smoothie; she explained she was recovering from battling a freakish bought of diarrhea, and was still experiencing the strangest side effect—she seemed to have lost her sense of smell. None of us yet knew these were symptoms of COVID-19. I would miss only one MS yoga class before the hospital finally cancelled its sessions. Since then, I’ve been hosting the MS yoga sessions on Zoom.

At the end of the first Zoom yoga session, Monica and I were the last two participants left on the screen. She told me she was looking forward to the COVID-19 antibody test. Wouldn’t it be cool if we’d already had the virus, and could just relax? I countered that since COVID-19 was a novel virus, we had yet to learn how effective antibodies would be, and for how long. Today on NPR I learned that those antibody tests we’ve been looking forward to do are actually riddled with false positives. It’s still too early to relax.

Even so, the unique challenge we all face is that we have to relax…at least enough to keep ourselves from developing a harmful immune response should we encounter COVID-19. And we have to stay vigilant. At least enough to keep the virus from getting to us in the first place. It’s a tricky balancing act. Those of us with autoimmune disease are uniquely positioned to have already experienced the loss of control the rest of you are now experiencing. It’s not easy to be calm in the face of imminent danger. But it is imperative. The immune component of the disease opens up an opportunity for all of us to take back some control of our health by treating ourselves well.

Gentle Reader, what have you been doing to relax?