The Antidote #22: vaccine season, pediatric long COVID, and poop talk
Plus: Drag artist-activists! The Paralympics! And, help me, I'm shoulding myself
The Tonic is a lighthearted, heavily resourced newsletter for folks interested in learning about long COVID, ME/CFS, and other health conditions. Come for the info; stay for the whimsy. Or vice versa.
Wish list shout out!
My people! Many of my readers have chosen to support my efforts here via the Amazon wish list in lieu of paid subscriptions (which could jeopardize my disability benefits). A big Tonic THANK YOU this week goes to wish list three-timer Paula S.!
The Tonic is free to read - Amy is so happy you’re here! There is no paid subscription option here like with other Substack newsletters. However, if you are valuing the experience and are able, please consider a show of support by sending a gift of health, wellness, or joy from this Amazon wish list. There’s something for every budget and any help is appreciated. Anyone who does gets a 📢 in an upcoming post (be sure to include a note with your gift). Thank you!
Should I or shouldn’t I?
Yes, I’m shoulding myself.
Some readers may recall that I included a poll a few posts ago asking what types of Tonic posts you liked better: long-form essays or The Antidote (link roundups)? Or did you like them equally? Or did one edge out the other slightly?
Only 36 votes, but check out how unbelievably dead-even this turned out.
I think I expected The Antidotes to edge out the narrative posts. Or maybe that’s what I was hoping for, because curating those are a lot less time consuming than original writing.
The reason I was hoping for a time-saving pivot is because I am going to be busier than usual this fall/winter with a few different pursuits (that I will one day tell you about). Said pursuits will take a good deal of my cognitive and cellular energy, leaving less room for other things. As mentioned in my one-year anniversary post, I am indeed looking to streamline the newsletter a bit, including posting every two weeks instead of weekly, for starters.
So here’s where the shoulding comes in: since my readers seem to equally value both types of posts, should I combine my narrative posts and roundup posts to deliver a hybrid post each time? I envision including a short bit of narrative writing - MUCH shorter than my usual tomes - and then The Antidote will become the middle section of the post, followed of course by The After-party. Can’t do away with that, it’s too much fun.
I attended a college where 95% of the assignments were writing-based: papers long and short, essay exams, and a thesis senior year (mine was over 60 pages). This is where my long-winded tendencies took root. Then I became a non-profit grant writer. I struggled to stay within funders’ page limits and often had to rely on a boss or a colleague to edit out my excess. I had several pieces published in trade journals for my profession (social work), but there was never a page limit imposed on me there.
When I write a narrative post, it takes me days and days - in large part because of my limited spoons, but also because I always have a lot to say, as you, dear reader, may well have noticed. But if I know that I have constraints (gotta leave room for The Antidote and The After-party), it will force me to be more concise. Also, just as a matter of practicality, my fall/winter pursuits will not grant me the luxury of having days and days to work on posts. So there’s that too.
So, what do you think?
Have you at times struggled to make it through one of my longer narrative posts? Is my hybrid idea a good one? I welcome any and all thoughts on this.
Quick-me-up(date)
Still long haul truckin’ here, enjoying the less humid days of late summer. If you have Long COVID, ME/CFS, POTS (postural orthostatic tachycardia syndrome - basically, your heartrate jumps abnormally way up when you stand), dysautonomia, or any other condition like these, you likely experience symptom exacerbation in extreme temperatures; for me, this seems to be much worse in summer than in winter. Check out Fiona Lowenstein’s excellent piece in The Sick Times on how climate change is making things worse for those of us with LC and POTS.
Other than that, I’m awaiting next steps on my SSDI approval (see my last post for that good news) and seeing my docs as usual. I returned to my new immunologist a few weeks ago and I am super happy with her; she’s extremely knowledgeable, takes my concerns seriously, but doesn’t hype anything up unnecessarily. After reviewing my test results, the main findings were that my serum tryptase is still high (17; normal is 8 or under), I have Hashimoto’s thyroiditis (which I already knew), and I had some very low lymphocytes among others that were within the normal range. I asked if I needed to see a hematologist and she said no, not for low numbers; if they were high, then yes. I asked if she would consider me immune-compromised. She replied, “immune-compromised or deficient, not entirely. I’d call it immune dysfunction. You will likely launch a good immune response to some invaders, but not to all of them.”
Good to know. We already know COVID is not a friend, and since there’s no way to dodge viruses selectively, I’ll keep doing what I’m doing.
Lastly, she administered the cheek swab test that looks for hereditary alpha tryptasemia (to see if my high tryptase numbers are genetic; this could possibly be why I’m a long hauler, she said at each of my last two visits). That takes about a month to come back, and I see her again in mid-October. Stay tuned.
I saw a new GI doc too for my, errr, incredibly slow-moving bowels since getting COVID. He gave me some homework (I’ll spare you the deets). He also suggested I may have a subtype of SIBO (small intestinal bacterial overgrowth, not uncommon in long haulers) called IMO (in my opinion). Just kidding - it stands for intestinal methanogen overgrowth, and is characterized by constipation. We discussed testing for it, but that testing in my area is only currently done in NYC and he said it’s only 70-75% effective. Since he is fairly certain this is what’s going on with me, we decided together to treat it and see what happens. This involves two weeks of xifaxin (rifaximin), an antibiotic that does not get absorbed through intestinal walls. I plan to start this next week, and to load up on pre- and probiotics while I’m doing it. Stay tuned for more on this. In the meantime, check out this Note I posted today for a good chuckle.
Shout outs to my nutritionist and to two of my best friends (Lisa and Rachey), all of whom I can talk to unabashedly about my intestinal woes.
Now onto the links.
COVID, Long COVID, and ME/CFS
➡️ STUDY ALERT: the Vassar College Long COVID Gut Microbiome Study is looking for both Long COVID patients and healthy controls (defined here as folks who have had COVID-19 more than five months ago but recovered just fine). I have enrolled in this study and was told that they particularly need healthy controls! I am particularly interested in the outcomes of this study, given what you just learned above about my GI issues since developing LC. You just have to send in a poop sample after filling out some forms. For more information, go here. To express interest, email: VassarGutMicrobiome@gmail.com.
Fun fact: I attended Vassar College for my undergraduate degree in the 90s. I keep joking that I pooped there for four years, but now I have to FedEx it to them! 💩😂
🤧 COVID is rampant right now among people I know and has been for over a month now. I wanted to boost this excellent post by friend of The Tonic
on his personal treatment plan should he get COVID again. Although written in January, he has updated it as needed and I’ve referenced it several times to dole out guidance to friends this summer.
👨🏻⚕️ While you’re at it, check out the good doc’s latest vaccine post:
💉 Sticking with vaccine posts for now: The New Covid Vaccine Is Out. Why You Might Not Want To Rush To Get It.
😏 And
on why we deserve better from our government re: COVID vaccines:
🧪 The U.S. is once again distributing up to four free COVID tests toward the end of September. Save this link to order yours when the time comes. I’ll try to remember to include this in my next post, too.
🧠 Study Finds Fatigued ME/CFS Brains Unable to Adapt to Cognitive Stress.
🤕 Okay, stick with me here for a sec. Do you have Long COVID or ME/CFS and you’ve either been curious about brain retraining/neuroplasticity or possibly offended by it, thinking that folks are implying these diseases are ‘all in our head’? Dr. Eleanor Stein has been a leading expert in ME/CFS for years and also suffered with it herself for over 30 years. She recently decided to give neuroplasticity a chance and she is now largely recovered. But she has also had to answer to those out there who are angry about her new stance on it. This blog post of hers - Can Myalgic Encephalomyelitis Be Cured With Neuroplasticity? - is worth your time. It validates all patients, educates around brain training, and calls on folks not to shame or dismiss those who have said it worked for them.
🤯 Long COVID science, research and policy. The researchers’ analysis on prevalence is great; we were long overdue for some updated numbers.
The cumulative global incidence of long COVID is around 400 million individuals, which is estimated to have an annual economic impact of approximately $1 trillion—equivalent to about 1% of the global economy.
🦠 This is just an abstract, but worth checking out: Enough already: T cell inflammation and SARS-CoV-2 virus persist in Long Covid.
👩🏽⚕️ This doctor is amazing: When poor Black communities were struggling with COVID, this surgeon stepped in.
🍬 Possible answers as to why so many of us (myself included) with Long COVID are coming out as pre-diabetic or diabetic: Non-human primate model of long-COVID identifies immune associates of hyperglycemia.
🏳️🌈 From The Sick Times: These are the drag artists and organizers fighting to make queer spaces more COVID safe.
🏳️⚧️ Saw this in STAT news, super fascinating: A study on trans men published in Nature is the first, per the authors, to comprehensively examine the impact that gender-affirming hormones have on the immune system. The study also sheds light on the potential factors behind immune differences between the sexes.
Men are more likely than women to die from Covid-19, but women develop long Covid more often. Researchers understand the basics behind these gendered odds. Men are more vulnerable to infectious disease, while women are more susceptible to autoimmune disorders. What we don’t fully understand is: Why? This study starts to unpack that.
😪 Also from The Sick Times: Even as a former executive assistant, managing care for Long COVID is a full-time job. I co-sign this; not only is managing the condition a lot, but managing disability applications and compliance is definitely at least a part-time job.
🧬 Gene changes caused by Spike protein could explain long COVID. I wonder if this could be an explanation for why some people develop LC after the vaccine as well.
🚸 Teens and kids with long COVID are showing surprising new symptoms. Important point: “The symptoms that showed up in younger children were less likely to overlap with symptoms experienced by adults with long COVID. The authors said this underscored the importance of age-based research.”
👶🏽 Speaking of kids, did you know that next week is Pediatric Long COVID Awareness Week? Go here to view various events taking place and to raise awareness.
🙉
often says what so many of us are thinking and feeling: “Early pandemic solidarity was an anomaly in modern life. Our political leaders want us to forget it ever happened.”
🌼 Fellow spoonie
with some invaluable recovery strategies:
🎨 Beautiful post by
on the music, art, poetry, and film that helps us understand ME and Long COVID. I was tickled to see my song suggestion included!
Webinars/conferences/podcasts/videos
♿ For those disabled in the U.S., Pandemic Patients is sponsoring a free webinar: Long COVID and SSDI. It’s on September 16th at 2:30 EST. Register here.
📺 Dr. Eleanor Stein again. Her website has these helpful short videos that you may want to check out, on topics ranging from mitochondria to low-dose naltrexone to orthostatic intolerance and post-exertional malaise (PEM).
🫛 Do you know about
who writes the Substack ? She’s an anesthesiologist living with Long COVID. I’ve recently connected with her here and discovered she also has a very helpful podcast Long COVID, MD: Navigating Recovery Together. That link will take you to Spotify, but you can find her on Apple as well. And of course, go subscribe to her Substack!🖥️ Here’s a recording of the recent panel discussion that Dr. Nancy Klimas and Dr. Ziyad Al-Aly were part of: Long COVID: An Emerging Global Health Crisis.
😷 Here’s a recording of the Fighting Mask Bans teach-in that took place on 8/20/24:
🧑🏻🧑🏽🧒🏼 Here’s a super interesting short: Did Your Parents Emotionally Neglect You? One of the four signs is that your feelings become somatized and turn into pain or illness.
💥 3 Hidden Causes of Fatigue Crashes on your recovery journey by Alex Howard of the Optimum Health Clinic.
Health miscellany
🙉 Am I a highly sensitive person (HSP)? I wouldn’t have thought so. But then I watched this short on Raelan Agle’s YouTube channel and started to wonder. So I went here and took the test. Crikey, I scored a 17! Anything above a 14 is considered an HSP. I always thought an HSP was akin to an empath, and I am definitely not someone who takes on other people’s feelings to the exclusion of my own. But that’s not what an HSP is at all. It’s more like someone who is really attuned and sensitive to the environment around them and within their bodies. And although Long COVID and the resulting dysautonomia made me super sensitive to stimuli (noise, in particular), I realize I’ve always been someone constantly aware of my hunger, my need to pee, the set-up around me at a restaurant or a concert, etc. And I’ve always needed to engineer my environment to some degree most of the time. I’d love to hear any thoughts you have about yourself as an HSP, or on HSP in general.
🩸 Maybe She’s Just Tired, Maybe It’s Undiagnosed Iron Deficiency. Very informative article; it prompted me to message my primary care doc this week to have her add ferritin to my upcoming bloodwork order.
👩🏽👧🏾👦🏽 Epidemiologist
with: Do kids need to get sick to build their immune systems?🤢 8 Strategies for Coping with Envy and Chronic Illness.
🦟 Some scary stuff going on with mosquito bites in the Northeast U.S. (and, like forever in many other parts of the world). Mosquito-borne illnesses are rising: Here's how to protect yourself.
💰 ALWAYS call and question any fishy or outrageous medical bill you get. This study shows that “for those with an unaffordable bill, 75% received financial relief through bill cancellation, assistance, payment plans, or price reductions. Among those who negotiated the price, almost 62% got a price drop.” And get this: “A more extroverted and less agreeable personality” increased a person’s likelihood of reaching out, the study authors wrote. Introverts, dig deep on this one! Or DM me and I’ll call and act like I’m you ;)
😝 Choking and alone? Check out this helpful video:
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🩼 Genocide health watch: Baby paralyzed in Gaza's first case of type 2 polio for 25 years, WHO says. I have seen that there are pauses in the attacks on Gaza to allow for polio vaccination, which strikes me as extremely out of touch if these same children will then die in a bombing. Just going to drop this one here:
👨🏽🦼➡️
on airlines saying “oops” when breaking a pricey wheelchair…enraging!
☠️ Most Americans Favor Legal Euthanasia. I’m with them.
💊 Did you know? Pharmacy deserts exist in 46% of U.S. counties and are more common in areas with fewer primary care providers and with higher social vulnerability.
🥵 This one’s for those with ovaries: Hormone therapy for those in menopause can slow aging and benefit health, study shows.
☀️ Did you know that summertime seasonal affective disorder was a thing? I feel so seen.
tells us more.
🌳 Living in tree-filled areas may reduce heart disease risk, study shows.
🧘🏼 3 Yoga Poses to Do at Home on Your Sofa.
Now stick around for…
🥳 The After-party 🥳
Added resources, joy, tomfoolery, and buffoonery
💓 If you don’t know who ALOK is, they are a beautiful gender-fluid individual who goes around the world speaking brilliantly about love, acceptance, compassion, and so much more. Here’s a great interview with them: “Love Is Life Force”: A Conversation with ALOK. But also, follow them in Insta, because seeing and hearing them speak is its own experience.
😩 oh, kerflooey…fall is my FAVORITE: The fall forecast is in and there’s some bad news for fall lovers.
🏞️ US national parks receive record-high $100 million gift: Here's who gave it and where it's going.
📄 Is it just me or are paper cuts like the WORST?! I found this fascinating: THE PAPER CUT PARADOX: Explaining why thin paper does not cut.
☕ Your Cup of Coffee Is Already Expensive. It’s About to Get Even Worse.
🩵 This is kinda neat - go test your color categorization at the Is Your Blue My Blue? site. I tend to see turquoise as more blue than green.
🤦🏻 Buffoon of the week: it’s 20-year-old Deario Wilkerson, who was wanted on murder charges and when U.S. Marshals tracked him down to a house in Memphis, he fell through the ceiling and right into their proverbial laps. (He was uninjured, in case you’re concerned).
🤦🏽♀️ Or how about the Austrian surgeon who allowed his 14yo daughter to drill a hole in a patient’s skull in some sort of twisted Take Your Daughter to Work Day scenario? The skull’s owner first heard about it in the media - wild!
🏆 Winners of the week: Have y’all been watching any of the Paralympics? The athleticism and grace under pressure have been truly thrilling. And NBC/Peacock has been doing a fantastic job with coverage that is sensitive and informative; I’ve enjoyed learning the rules of games that are new to me, and how athletes are classed by level or type of impairment. My favorite so far has been U.S. archer Matt Stutzman, who calls himself “the Armless Archer.” He hit a few really clutch bullseyes when he needed to and won the gold. Very exciting!
👨🏻🚀 And then I spotted this article: Meet Paralympian-turned-astronaut John McFall.
🐈⬛ 💩 And finally, it’s this week’s Cat Dump. Randy Rainbow takes the cake this week with his ode to the ultimate catless child lady (how brilliant is THAT?).
Thank you for the awesome round up! I saw a lot of articles I’ve missed that I’m excited to dive into. Also looking forward to hearing the result of your HAT test and ferritin results. As someone who once walked around with a ferritin of zero… it’s not fun.
PS love the “surviving out of spite” photo. I feel that deep in my bones!
In terms of whether or not to do the hybrid style - I’m still too new and catching up on your back catalogue so I may not be useful. So I vote for whatever makes most sense for YOU and your spoons. I know how long some articles to take (and how many spoons they require). I also hope you find yourself with a few extra spoons as we transition out of summer (my worst season)
I have been wondering if I would be considered a highly sensitive person, thanks for including that link! No guessing anymore, I scored 26!😬