Oh the dramatic titles. Are you ready? This could get exciting, so grab a tea and have a seat.
We left our story in mid-January 2023 with Christmas and birthday events behind me, some exhausting experiments done, and some lessons learned. After giving up on the Nebivolol, that beta blocker that made me a bit bonkers, I settled in on a new regiment with my old beta blocker, Bisoprolol. The good news was that I was down to half a dose in the morning and half a dose at night. This had the intended effect to keep the adrenaline from launching my heart into my throat, but it also had fewer of the side effects. I was excited to have found a new kind of balance and take stock in the fact that I was doing slightly better and on slightly less medication. (For the nerds like me: given the 9 to 12 hour half-life of Bisoprolol, half a dose taken twice daily would be ~65% to 75% of the peak plasma concentration of what a full dose taken once daily would be.) It looks like progress, smells like progress, but it’s so small and so incremental that sometimes it doesn’t feel like progress. Daily life was still mostly about symptom management — the heart racing, headaches and dizziness, continued blurry vision, exercise intolerance, general fatigue, and so on. I wanted to be happy about this progress but as I’ve seen before, this illness is like a meandering river where you never quite know what’s around the next bend. Is that a waterfall I hear?
Some days I wake up with a boost. Like a little nitric oxide has been released into my engine. I get a bounce in my step, a bit more energy, a noticeable drop in heart rate. Sometimes this is completely transient, lasting maybe a day or two and so I don’t count on this feeling lasting. Other days, this is actually a signal that something is going on in my body and when the boost is large and accompanied by a kind of exhausted energy (I really can’t explain this), it only means one thing — a viral infection. Over the course of the past year, I’ve had lots of viral infections aside from Corona. I live in a family of four with people coming and going, various degrees of masking, and sadly cold and flu viruses are still a thing in the world. I inevitably get sick, or rather, I get sicker.
It’s mostly minor viruses, but I didn’t write about my second round of COVID back in July. It came and went like a relatively normal course of COVID — 10 days testing positive, 12 days being sick, and done. It wasn’t fun, but it seemed to leave me not much worse off than before the infection, going back to baseline (i.e. back to where I was before the infection) and even returning to exercise and physiotherapy. It’s talked about a lot in the Long COVID community. People are naturally scared of their next infection and what it might do to their course of Long COVID. Some people end up getting worse, some go back to baseline like I did, and surprisingly, some actually get better (although that’s more rare). After this second course of COVID, I was also a bit less afraid of reinfection. I didn’t take any more risks, but I did feel slightly more at ease. So with every morning bolt of energy, I check myself for any other symptoms.
One morning in late January I felt that dreaded, exhausted energy. This alone doesn’t mean anything of course. It could easily be one of the dozen or so random viruses we all get in the course of a year. That is, until it comes time for The Test ™️. Everyone in the family knows the drill. Someone feels sick, we test. Someone we know is positive, we test. So I tested, and there’s no hiding the reality of another infection when that stupid second line goes red, even faintly so. I seriously hate that second line.
I grab some snacks, my mountain of medication and supplements, and head straight into quarantine. I notify Sabine and Luisa (Mateo was present), sending them that ominous photo of two red lines and email the one person I saw the day before (without a mask on). I tend to still mask a lot, basically everywhere in public, but there’s always family and close contacts. It has become this kind of non-event-but-still-a-major-event. I don’t want to say it’s been normalised, but there’s certainly a lot less stigma around COVID than there was a year or two ago. People seem to generally be less worried about getting that email or text message than in years gone by.
One thing that I wanted to consider this time around was taking an antiviral. I had spoken with my doctor just the week before about trying a course of Paxlovid, as some research (and a new trial) has suggested that it could help with any viral persistence that may be causing Long COVID. In Germany however, it’s not possible to get a Paxlovid prescription unless you have a medically necessary reason to take it, for example, if you’re immunocompromised. I tried in July when I was infected for the second time and it was a no-go. So getting it just for Long COVID, without an acute infection, was basically out of the question. Now we had a different story though, and luckily I was able to get a prescription the next day. I got a 5-day course of medication and started as soon as I could.
I won’t go into the details, but Paxlovid is actually two medications that you take morning and night (~12 hours apart). It has a ridiculously long list of drug interactions due to the way one of the Paxlovid medications works, so the day before I started on Paxlovid, I stopped all medication and most of my supplements. Let’s recap: I’m sick as a dog (where does this saying even come from?), off all my normal medications that manage my Long COVID symptoms, and I’ve just started Paxlovid with its own effects and side effects. Good times. People talk about the side effects of Paxlovid — a rancid taste in your mouth, metallic almost, and a kind of dull nausea. I’m generally the type of person that gets at least some, if not all of the listed side effects of a medication but nothing really prepared me for this necessary nastiness. You can read all about peoples’ experiences with “Paxlovid mouth”, but let’s just say that if I didn’t have a lot of faith in this medication, it would have been a very rough 5-days. Luckily, taking the stuff with enough food and drink made things quite a lot easier and after just a couple of days, I could already feel my symptoms easing up. This stuff works, like seriously works. After the 5-day course of Paxlovid and 7-days after first testing positive, I was back to testing negative again. Easy, peasy. Thank you Paxlovid.
The next 7-days I felt relatively normal and almost back to baseline, albeit more fatigued than usual. Not surprising given the infection I’d just done battle with. We had Sabine’s parents visiting too, so the timing of my recovery couldn’t have been better.
After a week of slowly coming back to life, I woke up with a nice energy boost. Probably nothing, just feels like the cold that the rest of the family has. I go to some appointments and go about my usual business. A couple days later, it starts to get worse, and so begrudgingly I wonder, “maybe I should test again even though the rest of the family has a cold.” Insert thinking emoji here. It’s a nasty cold too, coughing and sneezing and wheezing all around. I do The Test ™️ for like the tenth time in two weeks and you guessed it, positive again. This time it wasn’t just a nice light red line like a week ago but bold, red, angry and not to be mistaken for anything else. It’s rebound time. Everyone else tests and the kids are fine, but Sabine is positive as well. Fuck you COVID, again. Masks on, Sabine and I collect what we need and assemble in our bedroom and lock the door.
Now, if you’ve quarantined with kids and a family before, in a small apartment, you know how this goes. There’s basically no good way about it. The kids can’t fend for themselves yet, and so it’s a game of taking as many risks out of the picture as possible to keep the kids from getting infected. What was even worse this time around, was that Sabine was a week away from a snowboard trip with friends, and she really needed a vacation. I felt awful, I should have tested earlier and not assumed it was a cold. I put other people at risk, people I had just seen, including Sabine’s parents. I was stressed about both of us parents trying to quarantine from the kids, stressed about Sabine missing her vacation, and the next day after testing positive, my coughing increased and temperature rose into the fever zone. This had never happened with my previous infections.
I spent the next 3 days mostly in bed, and trying to help with doing dishes when I had a modicum of strength left in me. I stayed away from the kids as much as possible, used a separate (half) bathroom, and ventilated all the rooms during the day despite the 5°C temperatures outside. The kids remained negative and could continue to go to school all the while Sabine and I hacked and wheezed as the days ticked closer and closer to her vacation. I improved slowly but surely over the next two weeks, a far cry from the “few days” that a Paxlovid rebound typically lasts. Sabine’s robust, German farmer genetics had her back on her feet and testing negative again after just a few more days. It seemed like we had just made it and Sabine was just well enough to make her vacation. She left on a Saturday and still testing positive and sick, I continued to quarantine and rest as much as I could, while at the same time making sure there was food on the table for the kids. Luckily, the kids are old enough that this actually kind of works. I managed to finally test negative on the Wednesday after, a full 14 days after this rebound began. At this point, I had been sick for 21 of the past 28 days.
The storm did pass, but it left a mess in its wake. Being isolated and in quarantine for that long took a real toll on me, emotionally. The last week of quarantine was not only lonely, but depressing and just sad. It reminded me of how much time I’d lost, how much I wanted to do but was forced to sit out over and over again. But that particular phase was over now, and all the phases do end, I try to remind myself. Some take three days, others three weeks, some may take three years. I won’t go on about philosophies of impermanence but acceptance and an understanding that life is full of phases and seasons, like all of nature, brings me some peace of mind in times like these. I came out of this storm hurting, but I found myself, and carry on into a new phase, a better phase.
Dear Josh, it hurts me to read how much you have suffered. I have great admiration how you have coped with this awful illness. I hope that every day from now on will be a better day for you. Love, Mom
Hi Josh, I’m so sorry to read this! You and your family have been hit so hard. I’ll continue to read your progress and hope you’re doing better soon. Your in depth drug info is especially interesting too, thanks 😊