The greatest danger of COVID--for everyone--is that it can cause lingering, long-term or permanent effects. Research (and much experience over the past four years) has shown that COVID often causes damage to the heart and/or lungs, blood clots that can lead to serious, even fatal, issues, and a cluster of severely debilitating symptoms now known as long-COVID (or PASC, post-acute sequelae of COVID). Long COVID symptoms/characteristics
can include a long list of serious issues like flu-like symptoms, fatigue, cognitive dysfunction, muscle weakness, shortness of breath, microclots in the blood, neurological symptoms, GI symptoms, and much, much more, often leaving those affected bed-ridden or housebound and unable to continue with their normal functioning. In many cases, long-COVID develops into ME/CFS, an immune disorder triggered by a wide range of different infections (though COVID is turning out to be a particularly strong trigger).
Risks of Developing Long-COVID (or of Worsening if you have ME/CFS or Long-COVID)
Studies show that each reinfection with COVID increases the risk of developing long-COVID or other serious complications like organ damage.
For those--like me!--who already have ME/CFS (or long-COVID), a COVID infection or re-infection increases the possibility of worsening the existing condition, temporarily or permanently.
Two of the best ways to reduce this risk--for both those who are healthy and those who already have ME/CFS or long-COVID--are:
Get COVID Vaccines:
NOTE: Some people with ME/CFS--including me!--are not able to get the
vaccines. For me, they make me worse for at least six months and I
hardly make any antibodies to COVID anyway (not even when I get
infected). But if you tolerate them, it is highly recommended that you
stay up to date with each new one that covers current variants. The
study about vaccines linked above notes that the mRNA ones provide a bit
more protection than the adenovirus ones, though either would help. If
you're healthy, they will reduce your chances of developing any
lingering, long-term conditions after COVID.
Take Paxlovid:
If you do get COVID, immediately start taking Paxlovid (or, if you can't tolerate it, another COVID antiviral or other treatment).
The FDA reports that Paxlovid reduces the incidence of hospitalization and death in unvaccinated adults by 86% and also has protective effects for those who are vaccinated.
The research on long-COVID so far isn't clear (and of course, isn't focused on those who already have ME/CFS or long-COVID). This large NIH study on the effects of Paxlovid in preventing long-COVID
is very confusing. Their conclusions don't match the details they
describe. Right in the abstract, they state that Paxlovid during an
acute COVID infection did not reduce the chance of developing long-COVID, but then they say that data showed it did
reduce the incidence of cognitive and fatigue symptoms post-COVID ... which, of course, is much of what long-COVID and ME/CFS is! In addition, ME/CFS has a long history of responding well to treatment (with antivirals or other medications) of underlying or triggering infections.
What about rebound? I have heard of doctors telling patients (that are high-risk but are typically overlooked, like those of us with ME/CFS) that they don't recommend Paxlovid for them because it can cause rebound. This is not accurate. FDA studies show that rebound is a characteristic of COVID and occurs both in those who take Paxlovid and those who don't. Some studies show a slightly higher risk of rebound in those who take Paxlovid, but rebound just means a few extra days of acute illness and/or testing positive. After reading the research, I decided it was worth it for Paxlovid's protective benefits.
Other Treatment Options:
I know one person who had an allergic reaction to Paxlovid. If you are unable to tolerate it, there are other treatment options (link to CDC).
Molnupiravir is another COVID antiviral. It is slightly less effective
at preventing long-COVID symptoms than Paxlovid but is a good option if
you can't take Paxlovid. Both of those are oral pills. Remdesivir is a
COVID antiviral administered as an IV infusion that is another option.
You can also take (or increase your dose of) herbal antivirals, like olive leaf extract, monolaurin, and l-lysine. I take herbal antivirals every day, but I increased them when I got COVID, as explained below.
Testing
I haven't seen this discussed much, but it is very important if you have symptoms that could be COVID to keep testing. Both with this round of COVID and when I had it in 2021, it took 4 days after my symptoms began before I had a positive test! Fortunately, because of my risks, I was testing every day. I was certain that I did have COVID because my symptoms were so severe (and I just don't catch colds or flus because of my immune dysfunction). But this isn't just true for those with immune disorders. The same thing happened to my son last year when he got COVID. His symptoms began on Sunday, and he didn't test positive until Thursday (by then he was feeling a lot better). He kept testing because of me.
I think this is a very important thing to understand because so often I hear people who clearly have COVID symptoms say, "Oh, it's not COVID. I tested negative." Meanwhile, they're spreading the virus everywhere they go! Keep testing, for at least 5 days, especially if you are in a vulnerable population (like ME/CFS) that needs Paxlovid and/or are in danger of infecting anyone else.
My Experiences
Back in early July, I got COVID for the second time. As someone with ME/CFS (an immune disorder), COVID is very dangerous for me, and the first time I got it, in January 2022, it took me five months to return to my "normal" chronic illness baseline. At that time, Paxlovid had just become available but was in short supply, and I was unable to get it. I was extremely sick (i.e. couch-ridden) for about a month, then gradually improved over the following four months, with the help of some treatments. You can read about that in my Relapses and Recoveries post from 2022 (note that while a short course of steroids helped that time, it made things worse at other times and should only be used with great caution and under the supervision of a doctor).
My Experiences with Paxlovid:
So, when I got COVID this July, I immediately messaged my primary care physician (who first diagnosed my ME/CFS 21 years ago and understands it well) to ask for Paxlovid. Unfortunately, she was out for surgery herself, so it took multiple messages and phone calls to her office to finally get Paxlovid, but it was certainly worth the effort for the reasons I explained above.
I had only one side effect from Paxlovid: a metallic taste in my mouth for the five days I was on it. While this was unpleasant, it was tolerable and went away as soon as I finished my course of the medication. I did have a very small rebound: after beginning to feel better for a couple of days, I had about 24 hours where I felt worse again. Again, that was tolerable.
While I still got extremely sick, my illness trajectory seemed better with the Paxlovid than when I had COVID in 2022. I was bed-ridden/couchbound for about 2 1/2 weeks and then began to slowly improve, even able to begin taking (very short, very slow) walks again in the 3rd week. Since then, I have steadily improved.
Now, exactly three months after I got COVID, I am almost back to my normal baseline. I track how I feel each day on a scale of 1 to 5 (1 being great and 5 being bed-ridden/couchbound). The first 6 months of the year were the best I've been in years - see my Mid-Year Update, posted the day that I got COVID, hours before my symptoms began! My average of how I felt was 2.2 (with a couple of months coming in at 2.1), which is outstanding for me. You can see what COVID did and my gradual return (I got COVID on July 10):
- Jan - June - avg. 2.2 with 0 crash days (!)
- July - avg. 3.5 and crashed (4 or 5) 55% of the time
- August - avg. 2.6 and crashed 10% of the time
- September - 2.3 (actually 2.27!) and crashed 3% of the time (just one crash day all month)
So, you can see that I am almost back to my own "normal" baseline.
What Else Did I Do?
I went back to my notes and blog posts from the early days of COVID and vaccine prep, based on advice from experts to support my immune system. I made the following changes to my supplements:
For the first month:
For the first two months, I increased or added these herbal antivirals:
Finally, just a few weeks ago, I began taking digestive enzymes, as recommended by my ME/CFS doctor, but that requires a whole separate blog post to explain! It's a new approach that is helping those with ME/CFS and long-COVID and is not related to recovering from COVID specifically; the timing was just coincidental. After trying it for another few weeks, I will report back!
So, that's the research I found and my own experiences.
What have your experiences with COVID been?
Have you taken Paxlovid?
Have any other treatments helped you to recover from COVID?
Let me know in the comments below.
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