The Antidote #20: mast cells, vaccines, and celebrity long haulers
Plus, functional freeze, medical refugees, and...hobby horsing?
Welcome to The Antidote, the biweekly roundup post from The Tonic that is filled to the brim with goodies.
The Tonic is a lighthearted, heavily resourced newsletter for folks interested in learning about long COVID, ME/CFS, and other chronic illnesses. Come for the info; stay for the whimsy. Or vice versa.
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MCAS on the brain
I hope everyone is doing well out there and staying cool. It is so beyond stifling here this summer in NY that the other day I asked Baldy, “when did we move to Florida?”
This week I saw an immunologist for the first time in my long COVID career (continuous learning + managing everything that comes with this illness = a J-O-B). While I have been tapering down on my medical pursuits around LC, I sought out an immunologist at the suggestion of my infectious disease doctor, who after four years of trying to help me manage my MCAS (mast cell activation syndrome), ran out of tools in her toolbelt and appropriately told me so.
I am taking four things for my MCAS at the moment: montelukast, hydroxyzine, famotidine, and quercetin. And yet, my serum tryptase keeps coming back high (most recently in the 15-17 ug/L neighborhood; normal is considered under 8). Luckily, Montefiore Einstein has a center for immunological diseases not terribly far from me, so I called and they scheduled me with an immunologist who just so happened to spend some of her training time at Yale New Haven, adjacent to the world-famous immunologist and long COVID superstar Akiko Iwasaki.
Long story short, this doc spent a good 45 minutes with me and took a very thorough history of everything related to my MCAS diagnosis. I won’t go into every single thing we talked about, but I was impressed with her knowledge and care, and thus quite satisfied with the visit. The three things I wanted to share here were:
She told me it’s possible I don’t have classic MCAS, since my symptoms of this particular illness are not very pronounced despite my tryptase levels (and previous high leukotrienes detected in a 24-hour urine test). She said I might have a genetic disposition for high tryptase, known as hereditary alpha-tryptasemia. She said this could also quite possibly explain why I became a long hauler, and that there is an out-of-pocket test she can do to see if I have this (cost is around $160). I agreed to the test because I’d really like to know the results; I also want to be able to share the results with my blood relatives. She had no more test kits, so I’ll be getting this done when I see her for follow-up in a month.
I told her that my infectious disease doctor told me that activated mast cells could pre-dispose me to developing cancer (along with my T-cell exhaustion). I asked her about this too, and she said it was not very likely at the tryptase levels I was showing. She said if my levels were around 30 ug/L, then she might be worried about mastocytosis. I asked her how easily a tryptase reading of 15-17 could tip upward and head into dangerous territory, and she said it’s not very likely; if I had this problem, it would be showing up now. That all helped put my mind at ease, since the risk of cancer has been looming in the back of my brain for four years now.
I don’t remember why now, but she brought up the C-19 vaccines and whether I had a bad reaction to them. I told her with all three shots, I’d had an awful 36 hours of symptoms - fever, aches, pains, etc. I shared with her that last summer, I asked my functional medicine doctor whether I should be considering any of the fall 2023 vaccines (C-19, flu, RSV). His response was that he could not recommend that his long COVID patients get any of the vaccines, because our immune systems were already over-activated and no one really knows what pouring fuel on the fire would do to us. As I was telling the immunologist this, she was nodding vigorously. She then said, “I agree with him. You are one of the very few groups of people who I would advise not to get any vaccines. Specifically, because of your elevated tryptase levels and possible MCAS.” I thanked her for weighing in on that. I went on to tell her that I’m not too keen on taking them anyway because I have two (non-blood related) family members who experienced vaccine injury after the C-19 and RSV vaccines, respectively. Their symptoms rival any long haulers, and it’s terrible.
I wanted to share this with any of you who have either been told or suspect you have MCAS (very common among long haulers but also often exists on its own), in case you have had similar worries or want to pursue getting any of this checked out. With regard to vaccines, I’m taking these two very knowledgeable doctors’ input into account and I’m avoiding getting any for now. I’m still working on putting an end to the four-year rager of inflammation in my body, so one thing at a time, you know?
**None of this should be construed as medical advice. It’s just personal information on my own experience; go in whatever direction you choose.
Speaking of vaccine injuries
This morning, this headline caught my eye: Empathy should be the first response to people with vaccine injury, fears. It is actually a 30-minute podcast episode that is very much worth your time.
Kizzmekia S. Corbett-Helaire is an immunologist and vaccine expert; she helped work on the mRNA vaccines for COVID-19. Her acknowledgement that C-19 vaccine injuries exist and that medical professionals should treat these patients with empathy is leaps and bounds more than we’ve gotten from any of our government officials, media outlets, or other leading scientists (I’m looking at you, Fauci). She also states toward the end that many of the C-19 vaccine-injured are having symptoms very similar to long haulers - significant validation of the experience of our fellow sufferers.
To me, her interview highlighted just one of many reasons why we need more Black women in particular at the forefront of science and medicine. She credits her mother and grandmother for teaching her the kind of empathy that she didn’t learn in any of her formal training as a scientist. And although there are few answers yet pertaining to long COVID and vaccine-injury, empathy from officials on high can go a long way in helping sick people feel heard and seen.
Now, minks before links.
COVID, Long COVID, and ME/CFS
🎉 Congrats to
and Amy over at for reaching their 100th edition this past week. They also launched their database of long COVID scientific studies - an incredible feat of hard work!
🚫 More validation: Long Covid is not functional neurological disorder (first three articles each month are free with a STAT account).
🌠 Good news for the unplagued among you: Long COVID Risk Has Fallen, Largely Attributable to Vaccine Rollout (free MedPage Today account required to read). Also, one researcher makes a good point: with millions still getting infected with COVID, even a reduced LC number like 3.5% of those with COVID is still a huge number of people. Take heed.
🫀 I posted a Health Rising summary of this study last week: Cardiopulmonary and metabolic responses during a 2-day CPET in myalgic encephalomyelitis/chronic fatigue syndrome: translating reduced oxygen consumption to impairment status to treatment considerations. Posting the actual link here because the paper has some excellent recovery recommendations if you scroll to the Treatment Considerations section.
🎸 For some reason, I was thinking about celebrity long haulers the other day and I googled Jane’s Addiction’s guitarist Dave Navarro to see where he was with it all. He took a long break from touring and it seems he recovered to some degree. This is a few months old, but new to me: Dave Navarro returns to Jane’s Addiction after long Covid battle.
🌟 Here is a list I found on Wikipedia of folks with some level of celebrity who have or have had LC. Also, this is a year old, but: 8 Celebs Who Have Struggled With Long COVID.
🫄🏽 “Pregnant people are at a higher risk of developing more severe cases of Covid, which in turn increases the risk of serious pregnancy complications including preterm birth and stillbirth.” Taken from: Post–Acute Sequelae of Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) After Infection During Pregnancy.
👵🏼 I don’t know about the rest of you, but I definitely feel like my aging has been accelerated by LC - specifically, the skin on my hands and arms has become super wrinkly and crepey. This Health Rising piece may shed some light: Longevity Research: Could it Turn Back the Clock in long COVID and ME/CFS?
🗞️ Now for some excellent LC- and ME/CFS-related Substack posts of late:
Webinars/conferences/podcasts/videos
🫛 Great episode of A Friend for the Long Haul podcast this past week by
(Beth!). Dr. Laurie Nadel, a renowned journalist and therapist, shares her incredible journey, having battled chronic fatigue syndrome (CFS) and COPD. They delve into her amazing career, her own struggles with chronic illness, trauma, and loss - and her dedication to helping Long Haulers. Listen on Spotify or Apple. Also, follow Beth on Instagram because she’s smart and doing great things for our community.🥲 Dan Buglio of Pain Free You with some recovery inspiration for us all:
Health miscellany
🧘🏾 Core strength and your adrenal glands: help your body stay out of fight-or-flight with yoga and Pilates!
🤦🏼♂️ File this under, “oh, brother…”: Gen Z uses TikTok for health advice, survey reveals. So much of what’s being peddled there is inaccurate or misleading.
✈️ How to Travel with a Chronic Condition.
🔬 Medicine Means More Than Molecules: how the Doris Duke Foundation realized it should broaden its medical research philanthropy beyond those researchers who were already funded by the NIH.
👨🏽🦽➡️Do you know what the Capitol crawl was? A pivotal moment in the disability rights’ movement:
🪥 Why Bernie Sanders is targeting oral health: 'Dental care in America is in crisis.' It has always struck me as totally bonkers that neither vision nor dental care is considered an essential part of overall healthcare. These are not luxuries!
🛌🏽 Really important for those of us whose nervous systems have been stuck on as a result of trauma or illness: Bed rotting every night? You're actually in a 'functional freeze.'
♋ The surprisingly simple health rules cancer doctors swear by.
🩸 These period pads solidify blood to prevent leaks. It’s amazing that pad technology hasn’t changed in decades.
💊 A new way to prevent HIV delivers dramatic results in trial. This is pretty incredible - they stopped the trial early because the drug was 100% effective and they wanted to give it to everyone in the study.
🏳️🌈 ‘We’ve created medical refugees.’ LGBTQ+ healthcare workers fight for gender-affirming care amid rise in anti-trans laws. For trans people to have to relocate states - sometimes many, many states over - to receive life-saving care is completely unconscionable. Just like with abortion or reproductive care. Unacceptable. VOTE.
🏳️⚧️ Oh, and this ridiculousness: Trans Floridians haven’t been able to update birth certificates since 2023.
♿ In other “we’re absolutely going backwards” news: 25 Years After Olmstead v. L.C., Its Promise of Equality for People with Disabilities Remains in Limbo. Lack of resources for disability service providers threatens to reverse the gains made from the landmark Supreme Court case.
🍴 ARFID: the eating disorder you haven’t heard of. “People with ARFID are very limited in the foods they feel safe and comfortable eating, Dansie said. Unlike just being “picky,” this disorder can be debilitating and cause long-term health problems.”
⚖️ Also, this: Weight Stigma Is Bad Medicine. I recommend avoiding the comments section on this one.
💪🏽 Best Time Of Day To Eat Protein, According to Experts. My nutritionist helped me realize I was not getting nearly enough protein in my diet, so I’m going to eat it at any ol’ time, thank you very much.
Now stick around for…
🥳 The After-party 🥳
Added resources, joy, tomfoolery, and buffoonery
⚛️ “Cats twist and snakes slide, exploiting and negotiating physical laws. Scientists are figuring out how.” Read more in: The hidden physics of animals’ actions.
✊🏼 Have you heard? Our democracy here in the U.S. is headed straight down the shitter. Maybe this will help: The science of protests: how to shape public opinion and swing votes.
🕊️ RIP Bob Newhart. I loved him on The Big Bang Theory.
🚸 Say hello to
, a children’s author who is new to Substack. I especially loved this post of his. Give him a subscribe, will ya?
💤 The cult of 5am: is rising at dawn the secret of health and happiness? The TL; DR is a resounding NO.
🐳 Terrifying…and yet, totally exhilarating: ‘Absolutely incredible’: Man rowing solo across Atlantic is surrounded by whales.
🤦🏻 Buffoon of the week: Hobby horsing? Really? These Finnish toy-jockeys are my chosen buffoons this week (in a week where there were SOOOO MANY to choose from). I mean, what next? Dollhousing as a sport? Skeet shooting with squirt guns?
🏆 Winners of the week: This 98yo man made his 27yo new neighbor a chocolate bundt cake with white frosting to welcome her to the neighborhood. She returned the favor with a lemon pie. There are still decent people in this world.
🐈⬛ 💩 And finally, it’s this week’s Cat Dump. Shorthairs edition.
Thank you sooooo much for sharing your recent medical updates and insights! I can’t get those tests or an immunologist but am super comforted by your share. Particularly the worry about getting cancer, as I see many close friends now dealing with it. I love your newsletter and it really helps me cope! ❤️ to you all! 🙏
Awesome links. Admit I dived into the celebrity link. The wikipedia list of notables is short by about a couple thousand I bet, but helpful to hear from the celebrities who are brave enough to talk about their experiences, too.