It seems like forever since the start of the Covid pandemic, but actually, it’s been less than 2 years. Because this was a new virus, information about it is still being gathered and we’re still learning (especially as it keeps mutating), but there is one thing we know: somewhere between 5% and 10% of Covid patients will develop “Long Covid.” The official designation for Long Covid is PASC, Post-Acute Sequelae of SARS-CoV-2 infection. This is not active Covid. It’s a collection of symptoms that persist after the active Covid phase that persists after the initial infection is over.
How long does it last? Nobody knows yet. As of today, over a year and a half since the pandemic started, there are still patients (like myself) who suffer with a variety of symptoms. Some people get over Covid and are fine. Some have symptoms that trouble them 4-6 months later. Some continue to deal with symptoms a year or more out.
What causes it? Research is underway to find out. Theories include inflammation of various sorts. internal damage caused by the virus during the active phase, or the body responding to viral fragments left in the system after the active infection is over (sort of like having a scary cardboard cutout in your Halloween decorations that you later throw away, but for some reason the trash collector doesn’t pick it up, so every time you go outside and see it you jump, because for just a moment it looks like there’s a scary clown threatening you. Maybe your immune system is running across leftovers that make it jumpy). Really, nobody knows yet why it happens, why some people have it and some don’t, or why it lasts different periods for those who do.
What symptoms are included in PASC? A bunch and you might have one or more. These can include:
- Shortness of breath
- Racing or pounding heartbeat
- Fatigue
- Headaches
- Chest pain/discomfort
- Loss of sense of smell/taste or altered sense of smell/taste
- Joint or muscle pain
- Sore throat
- Brain fog/memory loss
- Dizziness
- Low-grade fever
- Hair loss
- Anxiety/depression
- Insomnia
- Hearing loss/tinnitus (ringing in the ears)/earache
- Nausea/diarrhea/diminished appetite
- Rashes
You might experience one, or more, or symptoms changing over time. And much like Covid19 itself, other symptoms may yet be added to this list. When I had Covid, they asked you about a dry cough or fever and that was it. I reported a bunch of other symptoms that are now on the screening list, but weren’t at the time, so they didn’t pay as much attention to my altered sense of smell, joint pain, chest pain, racing or pounding heartbeat, diarrhea, nausea, brain fog or insomnia. Those were added to the list over time as more cases provided more information. It will probably be like that for PASC.
Severity of PASC symptoms can vary. Some people have fairly serious levels of symptoms daily, and others, like myself, experience cycles that get better, then get worse (and every time they get worse again, it breaks your heart). Symptoms can be reactive to the environment. The recent wildfire smoke has done a real number on me — when the AQI (Air Quality Index) is high, my symptoms are much worse. They can also be unpredictable, really bad one day, not so bad the next, or bad for a week then not as bad for a couple of days. No way to predict.
Who gets PASC? No way to know so far. Previously healthy kids and adults are turning up with it. People who had moderate cases (as I did) or mild cases get it. No real pattern has emerged yet, but if you get Covid, you certainly could.
“Only” 5-10% of people who are tested positive for Covid get PASC, and for some it “only” lasts 4-6 months, so why worry about it? Well first off, those figures are mostly based on earlier versions of Covid, like “Alpha,” the original “wild virus” that I had. Variants are here (like Delta) that are much more contagious, so even if it stays at 5-10%, that’s 5-10% of a much higher number of people. 5% of 100,000 is “only” 5,000, but 5% of 40,000,000, the current number of people who have tested positive for Covid just in the U.S., is a lot more.
Also, variants, well, vary. Delta is far more contagious than Alpha. Does it make people sicker, too? Data’s mixed, but it may. Will it leave more people with PASC? It might. And we’re already up to the Mu variant (so the alphabet from A-M). Will one come along that leaves 25% with PASC? It’s certainly possible.
There’s no guarantee, or way to tell, if your PASC will last 6 months or 3 years. For some people, damage may be permanent. We just don’t know.
What do you do if you get COVID and have lasting symptoms? Talk to your doctor immediately! If your doctor won’t listen (and I’ve had some that wouldn’t), get a new doctor. This is a new disease and research is ongoing. You need an ally who, to begin with, understands that this is a real thing. Understand that some of the tests you have are to rule out other possible causes. Some tests are to show if you have sustained damage. There are no tests for PASC itself yet. They have to test for symptoms and treat symptoms. There’s no treatment for PASC itself.
Take care of yourself. Now, whether you have Covid or not, or have PASC or not, is the time to prioritize your basic healthcare and make it routine. Go to bed on time. Reduce those caffeinated fluids in favor of water. Mind your diet. Meditate, enjoy a hobby, get some exercise, support your mental health. See if your Vitamin D levels are where they should be. All of that supports the systems in your body that you need to encourage in order to heal. Diabetic? Watch your blood sugar.
If you do have PASC, consider joining a support group. There’s a few to choose from, including Survivor Corps on Facebook. Not only do they help spread the word so people understand what this is, it’s a place where you can talk about it and people understand what you’re talking about.
Don’t have it but know someone who does? Consider checking out the support groups to hear what other people are going through, to help you understand what your friend or family member is dealing with. Ask questions, NON-judgemental questions, of your friend/family member and listen to the answers. All of this can be scary, but pretending it’s not real doesn’t make it go away. Consider that this person’s energy levels/attention span/etc. are variable, so maybe he’s okay to go to the ball game one day but can’t have coffee the next and he probably can’t predict. Maybe she seems perky on Tuesday but on Thursday she can’t get out of bed. That can be part of this.
And protect yourself and those around you from Covid by getting vaccinated and masking. If we keep going the way we’re going, we’ll get to the Zed variant and somewhere along the line, we’ll create one that is more contagious, more severe and leaves more people with PASC, just through creating so many variants. Plus, if you know someone with PASC, you want to protect them from a “breakthrough” infection, so if you haven’t gotten vaccinated, make that appointment. Keep washin’ those hands, people! The basics (masking, hygiene) are still great protections against infection.
Sending out best, highest thoughts, wishes and prayers to my fellow PASC patients and their families and friends, and those vaccinated health professionals dealing with this Zombie Apocalypse (I know now who’s really on my Zombie Apocalypse team, and every one of them is vaccinated!). This is not easy to have, or deal with. Here are some sources of information:
Yale Medicine:
https://www.yalemedicine.org/conditions/long-covid-post-acute-sequelae-of-sars-cov-2-infection-pasc
NIH (National Institutes of Health):
https://covid19.nih.gov/news-and-stories/when-COVID-19-symptoms-linger
CDC (Centers for Disease Control)
https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/post-covid-index.html
Survivor Corps (Online Support Group):
https://www.facebook.com/groups/COVID19survivorcorps/?multi_permalinks=1047304706018388
Dr. James Campbell on Youtube: