What are your health worries?

Let's try to set them free

Welcome to The Tonic, a light-hearted, 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.

If you’re new here, you should know that my posting schedule is generally once a week on Saturdays or Sundays, and I alternate between a narrative post and a roundup post, so as to get more resources out to you and also to manage my own energy levels (often referred to as spoons). Occasionally I post more than once a week, usually to announce an event or to push brief, timely info out to you sooner.

However…

I have had to admit defeat to that rascally scoundrel that just lives to overwhelm us all, a.k.a. the month of December, so I’ll be taking a hiatus on my longer narrative posts until the new year. Today’s post is a bit of a light-lift hybrid: a little bit of narrative and a lot of resources.

Wish list shout outs!

So much love coming my way! So many of you 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 Tricia M. and Lauren S. for your generous gifts!

If you want in on the love fest, here’s the info. There’s something on the list for every budget, and anything you send will be very much appreciated.

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. Anyone who does gets a 📢 in an upcoming post. Thank you!

Now, onto a short but important topic this week.

What are your health worries?

This is a question for every one of my readers, whether you currently have a chronic fatiguing condition (like long COVID, ME/CFS, post-Lyme, fibromyalgia), another type of health condition, or are relatively healthy.

The week before Christmas seems like a terrible time to ask such a weighty question, doesn’t it?

for my money, the Alistair Sim version of A Christmas Carol is the best one; his facial expressions cannot be beat

Maybe posing this question now is a bad move. Maybe I’m a numbskull.

But maybe it’s the perfect time to ask, because my hope is that you’ll tell me about your worries here (in whatever detail you feel okay sharing) and then forget about these worries until at least the new year. I’m giving you a place to dump and run. Isn’t that smart of me?

and he has better hair

Or maybe it’s just kind. Consider it a holiday gift 🎁

Afraid to be the first one on the dance floor? I’ll be the Elaine Benes among us.

CW: we’re about to stop with the yuk-yuks for a few moments and get a little serious.

About six months into my long COVID, I started seeing a new infectious disease doctor based in NYC - a woman who had been treating and researching ME/CFS for many years. I explained to her that, in my quest to figure out what was wrong with me, I had seen an infectious disease doctor, a rheumatologist, and a neurologist up to that point, and so far the only finding was a small lesion found on my brain that had not been on MRIs I had before my COVID-19 infection. All other infectious disease and rheumatological tests came back negative.

This was a story she’d heard countless times before with her ME/CFS patients, and now she was hearing it again with long COVID patients. She assured me she knew what tests to run. Within a few weeks, after blood and urine tests, she uncovered T-cell exhaustion, mast cell activation syndrome (MCAS), and Epstein Barr virus (EBV) reactivation.

When the results came back and we had a follow-up call, I asked her what these things mean in terms of my health. She was kind and gentle; she meekly told me that the T-cell finding could possibly put me at greater risk for developing cancer. Same with the MCAS if it went untreated. Both T cells and mast cells are important parts of one’s immune defenses; if they remain compromised, then any developing cancer cells might grow unchecked.

She also explained that active Epstein Barr virus increases the risk for developing multiple sclerosis (MS) because it primes the immune system to attack its own nerve cells (MS is an autoimmune disease). I later read that a recent study showed that unchecked EBV makes one a whopping 32 times more likely to develop MS.

This information sent me into a tailspin when I first learned it. Nowadays, I am a bit calmer and tell myself that risk for diseases is not the same as a guarantee. I try to keep my focus on the things that I believe are helping me (slowly) recover (look for that post in the new year).

And yet…

Three years after she tested me and found all of this, and I am still testing positive or high for all three: I still show the same T-cell exhaustion, my MCAS is not under control despite being on three medications for it, and my EBV early antigen and other markers have actually gone up despite being on an antiviral medication for three years. In fact, midway through this year, she doubled my daily dose of valacyclovir and she recently told me to add quercetin to my MCAS regimen (which already includes H1 and H2 antihistamines and montelukast, a leukotriene inhibitor).

So, in addition to the great unknown of what long COVID inflammation has been doing to all of my organ systems behind the scenes for the past three years and nine months (like metabolic syndrome: I am now pre-diabetic, hypercholesteremic, and my thyroid is all over the map), the added and perhaps scarier health worries are that I’ll get cancer and/or MS. I am not alone among many long haulers regarding these concerns; for however different our symptom profiles are, so many of us have uncovered these types of issues with their own doctors.

So, those are my concerns: sort of medium-level, behind the scenes of my brain but sometimes poking out. This feels like the right time for some humor. Maybe I’d actually look better after, like ol’ Heisenberg here?

I don’t mean to make light of cancer. It truly is frightening, and that’s what I’m really trying to say. But also:

So, I’m dumping my worries here and taking a respite from them until after the holidays. I absolutely love the holiday season (we celebrate Solstice here in The Tonic household, and it’s serene and lovely. Then we go and celebrate Christmas with my family and it’s a hoot). I’m welcoming the chance to put these worries aside for at least a few weeks (heck, even longer, if that’s how this shakes out).

Now it’s your turn

Give me what you’ve got. Let’s process these worries and boo-hoo about them for a few days, and then set them free.

Are your worries like mine: an outcrop of long COVID or ME/CFS? Some other chronic illness?

Or do they originate from something else? Are they the result of some test result that your doctor said you should watch over time? A family history of (_____)? Exposure to mold, pollutants, or other toxins? A worsening of a condition you already have?

Share as much or as little as you want. Again, this is merely an invitation to dump and run, if it should serve you. I am here for any and all of it.

I promise this will not be me

And if not, that’s okay too. Some may not want their fears and worries on public display. Just know that if you are silently holding on to health worries, I am sending you warmth and strength. We are all holding something, aren’t we?

Stick around for some epic links….

🥳 The After-party 🥳

Announcements, links to articles and studies, recommendations and shout-outs, and miscellany joy and/or tomfoolery.

🗞️ The New York Times for the win this week, with two outstanding long COVID opinion pieces in a row. I’ll include links here, though these may be behind a paywall (that’s frustrating, since so many long haulers are out of work or underemployed). If so, you can email me and I’ll see if I can send you a gift link to the article of your choice.

First, veteran science reporter and hero to many a long hauler Ed Yong wrote Reporting on Long Covid Taught Me to Be a Better Journalist. Yong was one of the first reporters to put long COVID out there for the public to learn about, and he has since published several great articles raising awareness (here and here and the best one may be here).

Second, 1,374 Days: My Life with Long COVID is a super creative take on what it’s been like for information graphic designer Giorgia Lupi to live with the illness. Her symptom charting, piles of test results, and diagnoses all resonated with me and I’m sure with so many other long haulers.

👩🏽‍⚕️ You have to be your own healthcare advocate at all times. Read about it here in If I'd Listened To My Doctor, I Would Be Dead Right Now.

🛑 Long haulers, beware: there are companies marketing stem cell treatments to long COVID patients with scant evidence of their efficacy or safety.

⚒️ A few good Substack posts this week about chronic illness and work to bring to your attention: one by

Paced

and one by

Jen Carrington

(that’s good not just for business owners, but anyone with chronic illness).

From Convalescence to Career

Seven reminders for chronically ill business owners

🤓 Here’s info on a free ‘crip’ poetry class being offered online on December 19th at 6pm CST.

🖥️ Check out the UCSF Department of Medicine’s Grand Rounds on long COVID, featuring updates by such heavy hitters as Akiko Iwasaki, Ziyad Al-Aly, and Michael Peluso. This talk covers new findings about the mechanisms behind Long Covid symptoms, progress in trying to identify effective treatments, and our growing understanding regarding the impact of Covid infections on long-term health outcomes.

🔬 Another heavy hitter: if Nancy Klimas, longtime ME/CFS and now long COVID researcher, is a co-author on a paper, pay attention. Remission of severe forms of long COVID following monoclonal antibody (MCA) infusions: A report of signal index cases and call for targeted research.

🤦🏽‍♂️ Buffoons of the week: Red Lobster made a bad business move. The company thought that offering an endless shrimp platter would attract more customers for the summer. It attracted too many, and the company lost millions. (Also, can we discuss this irresponsible contribution to overfishing? Ugh…)

🏆 Winner of the week: Dr. Aaron Campbell, who turned himself into a traveling abortion doctor* after his Knoxville, Tennessee clinic had to stop the procedures due to the end of Roe v. Wade and Tennessee’s own archaic abortion law. Traveling all over the U.S. every 1-3 days is a grueling sacrifice, but he is committed to following in the footsteps of his father, who was also an OB/GYN who provided safe abortions for decades.

* I realize not every reader of The Tonic may be pro-choice, and that I may lose a few subscribers over this, and that’s okay. You have to have the courage of your convictions, as do I. And, bottom line: my newsletter, my body, my choice.

🍅 Phew…let’s have a little fun now. Missing tomato is finally found on the Space Station.

🐈‍⬛ 💩 And finally, it’s this week’s Cat Dump. This week is all about Birdie-bird.

This sweet calico girl was dumped outside of the home of a local cat rescuer last fall. Said cat rescuer posted her pic on Nextdoor to try to find her owner or a foster family. Baldy, as luck would have it, never changed his neighborhood designation (which was the same neighborhood as the cat rescuer) on Nextdoor after we moved in 2019, and so he happened to see the pics of this sweetheart and sent them to me. The rest, as they say, is history. One of our favorite things to say to her is, “who would give you away? huh?” because she’s such a gentle, sweet little girl with the tiniest little meow. She’s also hands-down the smartest cat I’ve ever known. She has stolen our hearts 😻

1. self-explanatory cuteness, 2. where she stands to bat her wand toy in an attempt to entice me to play with her, 4. doing her best Fritzy-by-the-fire impression, 5. watching The Crown with us

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**Disclaimer: I am (clearly) not a licensed medical professional. You should not rely on any information contained in this newsletter in making medical, health-related or other decisions. Please consult a doctor or other health professional.