A Practical Guide to Long-Haul Covid

Photo by engin akyurt on Unsplash

Update: It’s been 5 months since I first published this guide, and almost exactly one year since I first got sick. Since then, so much has changed for the better. More and more Americans are vaccinated; here, at least, there’s a joyous outpouring of first-time-in-a-long time’s; and long Covid is increasingly recognized not just as A Thing(TM) but multiple A Thing(TM)’s, with different presentations, treatments, and prognoses. All of which is miraculous.

Personally, well, things aren’t so rosy. I first wrote this article in what proved to be an incredibly short-lived remission, which is either encouragement that someday I’ll recover or an extinction burst, depending on the wrestled-into-submission levels of my inner demons. I’m unable to work (again), running 10 miles feels like a fever dream, and I’ve been slowly trending downward for a while.

But I’ve learned a lot since I first hit “publish.” I found new logistical and emotional coping strategies, treated some fun new sequelae, learned how to pronounce sequelae, and tried a handful of medications that didn’t work for me but may be useful to others.

I’ve updated the treatments section with the meds I tried, added a new section on mental and emotional coping resources, and taken a lot of naps.

xoxo,
Anisha, circa June 2021

It’s been seven months (update: one year!) since I contracted Covid-19, and I’m still sick. I was a healthy 29 year old with a “mild” case — I stayed out of the hospital, and I felt better after the standard 10 day recovery period. I went back to normal life (working full time, doing side projects, distance running) for a full two weeks, until the first relapse hit. I haven’t been the same since.

Suddenly, I could barely get out of bed to eat and use the bathroom. Simply standing sent my heart rate skyrocketing. I forgot words and simple facts, and couldn’t think beyond the brain fog. I was (am) tired all the time. Those first few months were awful, not least because I had no freaking idea what was happening to me.

Even now, I’m nowhere near normal. After months on full medical leave, I’m only able to work part-time (update: nope, back on leave!). I’m noticeably slower-thinking, less articulate and proactive, and more spacey. But I’m able to exercise (those 10-mile runs are back!)(update: oh, honey.) and use my brain in short bursts — a huge improvement from a couple months ago.

I’m not a doctor. Obviously. But over the last 7 months, I’ve had to piece long Covid together on my own, with the help of communities like the Body Politic and largely without the help of the medical system. I’m sharing my findings and misfires in hopes that it’ll help other long Covid sufferers, especially those during those first few months of trying to figure out what the hell is going on.

This isn’t a personal journey or awareness-building post — it’s a practical description of what has and hasn’t worked for me as I continue to battle long Covid. It’s long, dry, list-filled and hopefully helpful to someone out there.

One last note: I am so, so very lucky. I’m well-off financially and can afford to make decisions based on health rather than money. My amazingly supportive parents and partner help out around the house, research treatments and insurance, listen to and validate me, and do far too many other things to list. My boss is incredibly understanding. I’m an American citizen, fluent in English, South Asian, thin, and thanks to my background, education, and Shonda Rhimes media consumption, can speak decent “take me seriously, doc” — all of which provides a layer of protection against the medical industry’s very real, very scary biases. I know not everything I say will be accessible to everyone, and I’m sorry that that’s the case.

All that said, let’s dive in.

Contents

Research and diagnosis: Making sense of symptoms

• Helpful concepts and labels
• Long Covid resources
• What lab tests should I ask for?
• Interacting with the medical community

Symptom management and healing

• Symptoms, triggers and treatments
• Principles for recovery
• Supplements and diet changes
• Deep dive: low-dose naltrexone and low-dose Abilify
• Returning to exercise
• Tips for managing fatigue

Coping mentally and emotionally

How to support a friend or family member

Research and diagnosis: Making sense of symptoms

During the initial relapse phase, I had no idea what was happening to me. I’d never heard of something that makes simply standing up infinitely more exhausting than lying down, and couldn’t articulate the confusion, slow thinking, paraphasia, and inability to process new information (i.e. brain fog) in a search engine-friendly way. Without that foundation, I couldn’t treat myself.

Western doctors weren’t incredibly helpful, either. Instead, I turned to patient-led research, existing post-viral illness communities and Covid chatter to get a handle on my body’s response.

Helpful concepts and labels

These symptom clusters and syndromes provided a jumping-off point for treatment and further research:

• POTS (postural orthostatic tachycardia syndrome) explained why my heart rate increased 40+ bpm on standing, as well as the brain fog.
• ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) explained, well, the fatigue, and specifically the delayed reaction to overexertion called post-exertional malaise. If I did too much on a Monday afternoon (like, I don’t know, wash my hair and change the litterbox), I’d feel fine immediately after, but on Wednesday morning I’d be bedbound. Note that ME/CFS and POTS have a pretty high comorbidity.
• Dysautonomia is an umbrella term for autonomic nervous system issues including POTS.
• MCAS (mast cell activation syndrome) provided another explanation for brain fog, as well as feeling allergic.
• EDS (Ehlers-Danlos syndrome), a genetic disease affecting connective tissue, is frequently comorbid with MCAS, ME/CFS, dysautonomia and fibromyalgia
• The NAD+ hypothesis posits that Covid depletes NAD+ reserves, which leads to mast cell activation and other disruptions. (This article is worth a read.)
• Spoon theory and energy envelope were useful concepts useful when rationing energy and explaining *waves hand* all this to other people

Long Covid resources

These groups have been invaluable to me in understanding long Covid:

• Body Politic Slack group (I prefer Slack to Facebook, but there are equivalent Facebook groups as well)
• ME Action
• Dysautonomia International
• Study of long Covid

What lab tests should I ask for?

Having a framework to guide self-directed research was helpful, but I also needed labs and scans to further guide my treatment and rule out any issues requiring urgent action and. I worked with my doctor to decide what lab tests to order in Month 2 (i.e. past the active infection, early in the relapse phase). The big ones:

• D-dimer (very high priority to rule out blood clots)
• Chest x-ray / echocardiogram (very high priority to rule out cardiomyopathy)
• CBC and CMP (kidney / liver / electrolytes)
• Thyroid panel (Free T4, T3, and TSH)
• Vitamin B12
• Vitamin D
• Iron / TIBC and ferritin
• ANA
• CRP
• A1c
• I also got a FitBit and used it for a poor man’s tilt table test to check for orthostatic intolerance.

I’ve laid out a more detailed explanation here, including lower-priority tests, rationales and notes.

When getting signoff on these labs, I had to be proactive and come up with a list of tests that my primary care physician gave feedback on; I couldn’t passively wait for them to order a comprehensive set. Speaking of advocating for myself …

Interacting with the medical community

As long-haul Covid cases grow more prevalent, there’s less skepticism from doctors, but less is a far cry from zero, and I’ve found that even knowledgeable doctors don’t know how to deal with it. Proactivity and educating my own doctors was crucial. Here’s what helped me when dealing with doctors:

1. Having a medical quarterback: The fatigue and brain fog made researching treatments / setting up appointments / drafting talking points almost impossible. Luckily, a good friend took point on all things medical: helping me decide what specialists to see, what questions to ask, when to push back and when to freak out. This was invaluable for me, both as a time and energy saver, and because he helped me translate my symptoms into doctor-ese such that I was taken more seriously.
2. Trusting myself and other long-haulers: If I had a dollar for every time a doctor blamed long Covid on mood disorders or allergies, it’d go a long way towards paying those medical bills. I learned to trust myself above “experts” — if my body or brain felt off, I listened to that feeling, rather than the pulmonologist who thought that anxiety could somehow make my heart rate increase 40bpm on standing, or the psychiatrist who thought that Covid only impacted the circulatory system (*rolls eyes*).
3. Doing my own research: I set aside time to research new treatments and supplements, because doctors aren’t likely to be as proactive. I’ve also found some doctors to be suspicious of supplements, alternative medicine, etc despite evidence of their efficacy, and my / other patients’ research helped me find effective alternative treatments.
4. Writing out a symptom resume: Brain fog and fatigue make 30min telehealth visits difficult, and it’s exhausting to answer the same question every time. I started writing symptom resumes, with:
   - What I hoped to get out of the visit at the top (as specific as “echocardiogram referral” or as generic as “discuss medication options for psychological side effects”)
   - The symptoms that most impacted daily life, and to what extent I was impacted (e.g. unable to complete daily living activities, unable to work full-time)
   - Symptom timeline
   - Medications, supplements, and lifestyle changes I’d already tried / was doing (this helps pre-empt the inevitable “but have you tried meditating” question)(*rolls eyes again, harder*)
5. Tracking symptoms: I made this spreadsheet to track individual symptoms, as well as to visualize the relationship between how much I’m doing and how I’m feeling. It helped counter the “well you’re feeling better!” brush-off, when that improvement came from going on medical leave rather than actually recovering (*rolls eyes so hard they get stuck that way just like mama warned me*)

Daily symptom log, 30 weeks in. 0 = go-to-the hospital bad, 8 = Covid-normal 9 = normal-normal

Update: I’ve been using the Hummingbird scale developed for ME/CFS to track my “progress” — both cognitive and physical capacity, and whether I’m feeling better because I’m getting better or just because I’m doing less.

One last comment: I’ve seen a lot online (and heard from doctors) that there’s no cure for POTS or ME/CFS. This may (?) be true, but that doesn’t mean symptom management is impossible, or that it’s guaranteed to be a lifelong disease, or that doctors are allowed to brush you off.

All of this is to say — when I’m already exhausted, applying critical thinking to doctors’ advice feels like just one more burden, but it’s been incredibly helpful.

Symptom management and healing

After a few months, I had an alphabet soup to describe my symptoms and could learn what triggered them and how to help. This began the second phase of long Covid, when I was able to manage my symptoms and actually start recovering.

Symptoms, triggers and treatments

After much trial and error, I’m now better able to identify triggers and effective ways to manage my symptoms. (Caveat: efficacy is idiosyncratic, your mileage may vary.) Dosages, timing etc. for supplements are detailed in the Supplements and Diet Changes section.

Neurological

• Examples:
  - Brain fog (slowed thinking, aphasia / paraphasia, forgetting names and facts, inability to concentrate)
  - Fatigue (post-exertional malaise, your garden-variety crippling fatigue)
  - Pins and needles, numbness in my left arm and tongue, pain above my chest, headaches
  - Emotional fragility (inability to handle relatively small emotional disturbances, startle response, crying for no reason, crying for all the reasons)
• Triggers: physical exertion (especially sitting / standing up for long periods of time — thanks, orthostatic intolerance), emotional exertion, staring at screens, cognitive exertion (especially executive function, creativity, or strategy), video calls, lack of sleep, poor air quality
• Treatments: salt tablets, electrolytes, Niacin, NAC, Vitamin B12, CoQ-10, minimizing screen time, minimizing time spent sitting / standing
• Workarounds: At work, taking on lower-level execution tasks rather than strategic work; asking others to help with decision-making (even something as simple as meal planning exhausted me), only reading / watching familiar or formulaic content. See the Managing Fatigue section for more tips.

Tachycardia

• Examples: Heart rate jumps from 65–70bpm seated to 120+bpm while standing (orthostatic intolerance)
• Triggers: Sitting or standing, poor air quality
• Treatments: Minimizing time spent sitting / standing, especially while working; salt tablets, core and calf workouts; others used compression stockings to good effect

Sore throat / feeling feverish

• Triggers: Overtiring myself, especially physically or emotionally; poor air quality. (These flu-like symptoms can be expressions of dysautonomia)
• Treatments: Ibuprofen when necessary, physical and cognitive rest, extra electrolytes

Principles for recovery

1. Rest is the true healer. I didn’t start getting better until I stopped working, spent most of my day in bed, read nothing more complex than YA novels and did. Absolutely. Nothing. This meant taking a full medical leave from work (this isn’t an option for everyone, unfortunately), finding ways to manage fatigue (more on that later), and when I felt tired, immediately stopping to lie down and rest.
2. Emotional and mental effort is still effort. It took me way too long to realize that emotional and cognitive exertion tired me out just as much as (if not more than) physical exertion. Once, in Month 4, a friend was telling me about a visual programming language. About two minutes into the explanation, I had to lie down and nap for an hour — the mental effort was too high. Same thing for emotional energy —a 10min stressful discussion took as much out of me as a 60min low-stress one. (Since getting sick, I’m trying not to spend my very limited, valuable energy on people who stress me out, and I kind of appreciate my body helping reinforce that.)
3. Recovery is non-linear and uncertain. Once I could walk without exhausting myself, I set a goal of walking more steps every week. Terrible idea. I’m doing my best to accept that the trajectory is non-linear, that symptoms appear and disappear every week, that an easy task today might be impossible tomorrow and vice versa — and that I may never be back to who I was before I got sick. It’s scary and demoralizing, but very possible.
4. Ruthlessly prioritize energy expenditure. At my sickest, my priorities were 1) staying alive and 2) keeping my cat alive. This meant re-evaluating whether “required” activities like brushing my teeth and showering were truly essential. I used a post-it system to block out my energy use for the week so that I could space out must-do’s like litterbox changes and doctor’s appointments and, when possible, do something fun or restorative.
5. There’s no right way to think or feel. I’m not grateful for the opportunity to slow down, I’m not changed for the better after All This, and no, long-haul Covid is not really a blessing in disguise for me. I’m trying not to waste my precious energy beating myself up about not meeting societal expectations about what a sick person looks and feels like (see points #2 and #4) and cut myself a whole lot of slack in the gratitude department.

Supplements and diet changes

On a more practical note, here are the treatments I’ve tried:

Saw significant improvement

• 1g salt tablet / day
• 1 Nuun electrolyte tab in 16oz water, 2x / day (also if I overdo it, taking extra electrolytes sometimes helps)
• 120mg CoQ-10 / day
• 600mg NAC
• 250mg Niacin / day — specifically not nicotinamide. This article on the NAD+ hypothesis has an interesting theory on post-covid cognitive effects; it’s where I got the niacin recommendation. NB: Niacin can cause flushing, so I worked up from 25mg/day for a week, then 50mg, then the full 250mg.
• 1200mcg Vitamin B12
• 1 Align extra strength probiotic, 2x / day
• Montelukast (prescription allergy treatment)
• Vitamin D
• Cutting out alcohol entirely for the first few months and only having in small amounts afterward

No clear impact

• Turmeric capsules
• Vitamin C
• Peppermint oil
• Selenium
• Zinc
• 1–2 ibuprofen / day
• Acupuncture
• Cutting out caffeine, sugar and gluten

Update: I tried low-dose naltrexone and low-dose Abilify. Both were ~unmitigated disasters~ great learning opportunities for me, so I’m giving them their own section.

Haven’t tried but others report success

• Compression stockings for POTS
• Quercitin
• Psychedelics
• Ivermectin

Tried and failed spectacularly

• Keto diet (anecdotally, many other long haulers report success with keto-paleo, antihistamine or auto-immune paleo diets, it just didn’t work for me)
• Low-dose naltrexone (LDN)
• Low-dose Abilify

The latter two are (supposedly) side-effect free, so when I started experiencing migraines and very scary depression with LDN and migraines, anxiety and insomnia with Abilify, I scoured the internet trying to find out what was going on. An unorganized list of what I learned:

• With LDN, it’s important to titrate up to a full dose. I was first prescribed 4.5mg, which gave me migraines; I later learned that the LDN Trust recommends starting at 1mg and increasing by 0.5–1mg every 2 weeks for autoimmune patients. I eventually got all the way down to 0.05mg, which still caused horrible depression, before I gave up.
• LDN side effects are non-linear (for example, a bad headache on 0.5mg doesn’t imply a mild headache on 0.25mg and an unbearable one on 1.0mg; it may mean no side effects at 1mg and psychiatric effects at 0.25mg.), and taking it in the morning vs at night can change the efficacy and side effects. It’s a damn Battleship game.
• I got both meds from a compounding pharmacy, which is more expensive than getting regular doses from a regular pharmacy then Walter White-ing them into low doses, but also much easier for my clumsy, non-detail-oriented self. Pro tip: Just because they default to charging you 30 / 60 / 90 days’ worth doesn’t mean you can’t ask for a smaller (cheaper) quantity to see if it works before going whole hog.
• Even if the medical community, the internet, and various Well Respected Sources insist that a drug doesn’t have side effects…a drug can still have side effects. Once more for the folks in the back: If your body and your doctor disagree, listen to your body.

Returning to exercise

This is a good time to restate that I’m not a doctor, returning to exercise is scary and fraught and idiosyncratic, and this is just my own experience as someone who:

• Was a healthy long-distance runner before getting sick
• Suffered from fatigue and orthostatic intolerance more than shortness of breath
• Hasn’t had physical activity-triggered PEM since Month 4
• Has no heart problems (and was cleared by a cardiologist)
• Recovered physical abilities much faster than cognitive ones
• Is willing to deprioritize other things (e.g. cooking, writing, chatting with friends) in order to exercise again.

That said, here’s how I approached a return to exercise.

Months 2–4 (from bedbound to ~3mi walks)

• When I was housebound, the CHOP protocol was a useful way to pace myself, but I was bored out of my mind — I missed actual workouts, in no small part for the stress relief. When I was less fatigued overall but still had pretty bad orthostatic intolerance, Pilates helped me get a good workout in while sitting / lying down.
• A cardiologist told me that strengthening core and calf muscles help with POTS (better blood flow)
• I used my heart rate as a gauge and tried to keep it under 100bpm. If I went over, I sat down immediately until it dropped below 85bpm.
• I avoided doing physical activity and heavy cognitive activity on the same day (e.g. if I did errands, I wouldn’t try to read anything harder than YA novels). Even now, I can’t work and do more than a short walk on the same day.
• I gradually increased from walking around the block, to half a mile, to a mile, then 2+, waiting at least a week before each increase and closely monitoring myself 2–3 days after an increase for delayed PEM.

Others have recommended recumbent bikes, rowing machines, and kayaking as good forms of seated exercise.

Months 5+ (3mi walks to 10mi runs)

By month 5, I could walk ~3mi miles without crashing, so I started introducing jogging slowly: I started by jogging 30 seconds for every 5min walking, for 1mi total. I then increased it to 1 min jog / 5 min walk for a mile, then kept the same jog / walk split for 1.5mi, then 2mi.

From there, I went to 3 min jog / 5 min walk at 2mi, then 5/5, then increased my mileage based on how my body felt rather than a specific schedule.

Again, I gave a week buffer between each increase and kept a close eye on possible PEM.

Now, at month 7, I’m back to running 10 miles just fine, even though 2 hours of seated desk work exhausts me for the rest of the day. Long covid is weird, folks. I’ve settled into a routine of one big run a week rather than multiple shorter runs, which allows me to block off a day for exercise when I don’t have work / errands etc. I try to minimize physical activity on days that I work, aiming for <2,500 steps a day.

If I pushed myself too far, extra Nuun electrolyte tabs helped alleviate the PEM somewhat, but the only cure is rest.

Tips for managing fatigue

• Micromanage energy expenditure. After a shower, I’d set a timer for an hour to make sure I rested enough. I’d also plan out my day and week so I wouldn’t stack too much into the day, even down to “doing the dishes” vs “clean litterbox” days.

Obsessively post-it’ing out energy expenditures

• Stop as soon as I get tired. Whatever I was doing, if I felt the fatigue coming on, I’d stop immediately and lie down. This helped head off PEM.
• Watch / read formulaic stuff. Complex plots were sometimes too much for my brain, so I focused on things I’d already seen or read, or predictable content like YA novels, romances, sports, and reality TV. Say Yes to the Dress was my favorite — the episode structure is incredibly formulaic and not emotionally fraught, so there’s minimal cognitive and emotional load.
• Take a cold shower to lower heart rate quickly.
• Watch out for sneaky-big energy expenditures like washing hair and video calls (even social ones — audio is much easier)
• Use heart rate as a gauge. Up until Month 5, if my heart rate went above 100bpm, I’d take that as a sign to sit down and rest until it dropped to 85bpm.

And some tips for living alone:

• “Carpool” chores (for example, I’ll sweep a room on the way to the bathroom so I only get up once).
• Break chores into subtasks that others can help with. For example, taking out the trash is tie bags + move trash outside apartment + move trash from building hallway to outdoor bin, and my neighbors can safely help with the third subtask.
• Automate as much as possible. I got a Roomba and automatic litterbox and they’ve helped so, so much. Also, microwaves make excellent cooks.
• Drastically lower your living standards. Do dishes really need to be washed all the time? Can you clean one room in your house and pretend the rest don’t exist? How long can you go without doing laundry?

Coping mentally and emotionally

In no particular order, things that’ve helped me deal with this new reality:

• The Lady’s Handbook for Her Mysterious Illness by Sarah Ramey
• The Gifts of Imperfection by Brene Brown
• The Nap Ministry, which provides a much-needed reminder that grind culture is a tool carefully crafted by the wealthy elite who —sorry, getting off my soapbox now. But it’s a great Instagram follow.
• The Food Heaven podcast, specifically the “Laziness Does Not Exist” and “How to Support Your Friend with Chronic Pain” episodes
• Mr. Wardell Stephen “Steph” Curry II
• Sending letters and emails to friends — they’re way less spoon-intensive than calls or in-person hangouts and help avoid isolation
• Delegating research— I’ve gotten pretty jaded with the whole medical system and can go from “gaaaaaaaaaaaaaaah this is the worst” to “why even bother trying to treat {new debilitating symptom}, it doesn’t matter, nothing matters, you don’t know me, you’re not my mom” with impressive speed. I’ve found that asking someone for help researching treatments means that the towel gets thrown in far less quickly
• Stardew Valley

How to support a friend or family member

Finally, I’ll share the ways that the amazing people around me have helped out, and what I should’ve asked for in retrospect. There are tons of resources on how not to be a jerk to someone with a long(ish) term illness written by much smarter and more experienced people than me, so I’ll stick to specific, smaller items:

• If you can, take on a quarterback role. My “medical quarterback” friend has been invaluable; looking back, if I could wish for any sort of help, it’d be for a disability czar to whom I could offload complex, ongoing, cognitively intensive work of dealing with disability payments. (Quarterbacking is a big ask, I know, but it helps so very much.)
• Offer to help with cognitive load. If that’s too much of a commitment, ask if you can take the lead on planning / prepping / following up (ya know, household project management) whether it’s around the house or for virtual get-togethers.
• Ask how to check in. Personally, I love when someone asks if I’m doing okay (especially past the 3-month mark), because mostly I’m not, and I appreciate when someone shows they aren’t sick of hearing that. To others, that feels invasive and condescending. So just ask how to ask. I love it when people ask what I need and follow through — it’s simple, but kind and powerful. Also, I found asynchronous communication a lot easier — I could respond to texts and emails in “good” moments, whereas phone calls, voicemails and voice memos took way more brain power.
• Don’t prescribe an outlook or timeline. If you say “you’ll get better soon!” I hear “I don’t want to talk about things that make me sad, and you make me sad.” If you say “lots of people have it worse,” I hear “if you express anything other than optimism and gratitude, you’re ungrateful.”
• Ask before sending articles... Long Covid is increasingly in the news, but often, articles only cover what I already know and/or tell depressing, triggering stories. It never hurts to say, “If I read interesting articles about long Covid, is it okay if I send you a link?”
• …and don’t give advice or suggests treatments unless asked. Double-don’t suggest the following: meditation, yoga, walks, journaling, changing your attitude.
• Offer a variety of activities and a check-in point. Rather than “want to go for a socially distant hike?” say, “Let’s try to hang out on Saturday afternoon. We can do a hike, sit in the park, video chat, or Netflix Party. Let me know how you’re feeling Saturday morning, and we’ll do a final check-in right before I get in my car.”
• Listen. For the past seven months, my answer to “how are you” is “I feel like shit and I don’t know when I won’t feel like shit and I miss who I was before my identity was being a person who feels like shit,” and it’ll be my answer for quite some time. I’m so grateful to the people who are willing to listen to my true answer, month in and month out.

I wish I could end this all on a high note, but the truth is, I’m a far cry from being healthy. In a good-case scenario, I might be back to full-time work 9–12 months after I first got sick, but even then, I won’t be normal —the daily exhaustion will still be there, and that’s a depressing and demoralizing prospect. At the very least, though, I hope that my experience can be of use to someone else. And I’m still hopeful that, even if it takes months or years, most of us long-Covid folks will recover.