What’s It Like to Live With Long Covid?

The impact of a COVID-19 infection has been well documented – as of publication of this article, there have been more than 233 million recorded COVID-19 cases and 4 million people have died from the virus. What is less known are the longer symptoms of COVID-19 that may be experienced after recovering from the initial infection, known as Long Covid.

The reality is that we still don’t have a full grip on what Long Covid is and how it manifests in the body, but the scientific community is continuing to investigate this phenomenon. That being said, what we at OTandP do know currently is that Long Covid experiences are widespread. We are committed to learning from and sharing these experiences with the greater OTandP community to exchange information and possibly fill any knowledge gaps.

We are pleased to introduce the launch of our latest blog series, The Long Covid Diaries. In this new series, you’ll hear from people like you who have either personally experienced or have cared for those who feel the effects of Long Covid. These anecdotes intend to complement the ongoing investigations researchers from around the world are conducting to better understand Long Covid. You can also learn more about Long Covid by visiting our Long Covid Resource Centre, where we provide ongoing updates on Long Covid research.

Long Covid symptoms can have detrimental effects on the daily lives of those experiencing the syndrome, as we learned in our conversation with a sports medicine physician. In Hong Kong, we don’t know exactly how many cases of Long Covid there are currently since the main symptoms of Long Covid – fatigue, breathlessness, and/or brain fog – can also be associated with many other types of illnesses. But we have been able to learn more from directly talking to and caring for those who happen to be living with Long Covid.

In our latest Long Covid Diaries blog, we spoke with Gareth who has been dealing with Long Covid symptoms over the past year. Gareth currently lives in Hong Kong and is the CEO of a digital marketing agency. Gareth has normally lived a very busy yet active and healthy lifestyle, often spending his weekends on hiking trails. But after experiencing a COVID-19 infection in March 2020, Gareth then spent months facing the physical and psychological toll of Long Covid.

Gareth visited OT&P in May 2020 when he was first experiencing Long Covid symptoms. We spoke with Gareth to check-in and see how he’s doing today, and to ask him what his experience over the past year has been living with the longer-term health effects of COVID-19. Click below to hear Gareth’s own words about the Long Covid symptoms that he (and potentially many others) have faced

Gareth's Long Covid Timeline

The COVID infection

March 2020

There were COVID-19 cases detected at both my gym and my office building. Very soon after, my wife and I quarantined at home for two weeks. During this time, I experienced:

1. The feeling of spacing out every so often,
2. Gastrointestinal (GI) issues and food sensitivities,
3. Poor sleep, and
4. Slightly elevated heart rate.

But initially, I didn't really attribute these problems with COVID-19. I was expecting a significant cough and breathing trouble so I didn't make the connection that this could be a COVID-19 infection. I didn't have a temperature until weeks later, and my wife had a temperature for a day but otherwise was asymptomatic.

Something's still not right

April – May 2020

As the office re-opened and things got back to a restricted normal in April, I noticed that my stamina after hiking on weekends had dropped significantly. I was also needing to sleep 10-12 hours at night and was really struggling with staying alert and focused on work. Generally, I wasn't quite feeling myself.

On paper everything was fine. It was hard to pinpoint what was really going on because otherwise I felt like everything else in my life was going fine.

Really struggling

Summer 2020

By May, I was really struggling. I would have a few good days where I'm feeling mostly normal, but most days were bad. It was hard not to feel guilty when my extreme fatigue would get in the way of doing work or socializing with others. When you define your life around being able to get stuff done and for people to be able to rely on you and then suddenly that's no longer the case, it's tough. I felt like I was letting other people down.

I experienced a lot of GI pain and bloating. But this was quite minor compared to the fatigue I was experiencing most days. I couldn't focus on what I was doing at work sometimes and had several days where I simply had to go home and rest. Again, I didn't really make the connection and thought it was some other non-COVID related illness that would pass in a few weeks.

Throughout the summer of 2020, I experienced:

My neurological symptoms getting a lot worse. I couldn't remember names, I put my keys in the fridge and other things like that. It was like I had early-onset Alzheimer’s, a hangover, and severe sleep deprivation all the time.
"Visual migraines" – jagged lines with kaleidoscope colours to the left of my vision but somehow in both eyes. It always went after about 30 minutes though.
Spiking resting heart rate which sometimes made me feel like I would fall over when I stood up.
GI symptoms that I would experience from time to time such as cramps, bloating, feeling sick if I ate "too much" etc. But after tests were done my gut bacteria was remarkably normal despite the GI problems.
“Fight or flight" symptoms randomly through the day or night that seemed totally out of odds with what I was doing at that time. Like someone was just pressing a button randomly and triggering my stress response.
I also experienced, not quite a shortness of breath, as I always felt I could breathe well through the diaphragm, but more like whatever I was breathing wasn't enough, like somehow my body wasn't using the oxygen efficiently. Occasionally, I would wake up at night gasping for breath.

I was very much in a cycle of crashes through the summer until November. I was able to work, but every day was a struggle. One day when I came home from work, I was so exhausted that I fell asleep in my dinner.

The “crash” itself is a strange thing. It's like your body doesn't have enough energy to think, let alone move. I was able to lie there and not really have any background chatter in my mind. It's weird having your inner voice muted like that due to fatigue. Unfortunately, it’s not the peaceful, meditative kind of silence as you are trying to work out why you are in bed and not doing the things you are supposed to do.
At the beginning of August, I started taking a variety of medications, trying to find some sort of treatment or anything for symptom relief such as ice baths and Wim Hof (WHM) breathing techniques. It didn't fix me, but it made the symptoms more bearable. The ice baths especially left me feeling calmer for days afterwards. The WHM breathing improved my diaphragmatic breathing and nose breathing which helped with the fight or flight response I was experiencing. Again, not a fix, but symptom relief.

Out of desperation for an answer to why I was feeling so bad, I started searching online for things like "chronic fatigue,” and that’s when I found Dr. Trodd at OT&P. We went through a process of elimination with things like toxic mould exposure, vitamin imbalances, and other non-COVID related things like that.

At this time I started reading about this experience happening to people who'd had COVID-19 and told Dr. Trodd. Of course, the acute illness was long gone, so PCR tests to detect COVID-19 were negative. I also had an MRI scan on my brain and other neurological tests, but nothing showed up at this time.

“You basically feel like a ghost of your former life, and you're just living for future you.”

"Is this my new life?"

November – December 2020

In early November, I went on a 4-hour hike, which on reflection was way too much. Throughout the hike, I could feel pain in my chest. The next day, I saw a cardiologist and was diagnosed with myocarditis.

I continued with trying prescribed medications and changes to my diet and nutrition that didn’t make my symptoms go away completely but at least helped me react to foods better and get better quality of sleep. If I ate ketogenic, and as close to a carnivore as possible, and fasted a lot, I definitely felt closer to my old self. That said, it didn't really solve the underlying problem, just made the symptoms more bearable. I also discovered that high dose vitamin B3 as niacin (1g a day) was helpful with symptom relief, too.

At this point, I wasn’t hopeless, but I think I had gotten it into my mind that this is just how my life is going to be forever now. I rarely took pleasure in most activities because I just felt so physically ill all the time. You basically feel like a ghost of your former life, and you’re just living for future you.

"I was relieved to be told something is wrong with my brain!"

January – February 2021

After taking a S100B test, which is a neurobiochemical marker for brain damage, I was told my S100B proteins were so elevated for brain inflammation that Dr. Trodd asked if I had recently experienced a concussion (I hadn’t).

I was prescribed corticosteroids to treat the brain inflammation. I felt significantly better – the best I had felt in a long time and nearly back to my old self.

It’s strange, but I was relieved to be told there’s something seriously wrong with my brain because you know that it hasn’t been functioning properly for so long. It was just good to start getting more decisive answers on what was going on.

The COVID-19 jab, more tests, and new medications

March – Summer 2021

In March, I took an intravenous immune globulin (IVIG) to bring down the brain inflammation. Basically, I felt a lot “calmer” in the sense that my fight or flight symptoms seemed to subside. Four weeks later, I had another S100B test again and I was pleased to see I was showing significant clinical improvement.

In April, I had the first dose of the BioNTech-produced COVID-19 vaccine and then the second dose in May. About 2-3 weeks after the second dose, I started to feel pretty good.

While I strangely was still dealing with some GI problems and chest pains from time to time, I overall felt much better and the neurological symptoms were largely gone.

Throughout the summer, I went in for more tests, including a POTS test and another MRI scan for my heart. Certain new medication that I tried, such as propranolol, made me feel fatigued, but others such as statins and LDNs helped me feel significantly better. From this point onward, I was steadily improving.

"Not 100%, but 80%"

September 2021

In August, I started light yoga, very light weightlifting based on guidance from my physiotherapist, and gentle hikes again. This seemed to improve my orthostatic intolerance. Wearing compression socks was also helpful.

By September, I was feeling mostly normal and increasing my exercise regimen gradually. Still not feeling 100%, but maybe 80%. I was still getting tired easily, but I felt like I've got my life back.

It's hard to say whether it was the various medical interventions, lifestyle choices such as fasting and keto, the COVID-19 vaccine, or simply time. But it's likely all of those things.

"I'm on rainbows"

Today

I have been completely off certain medications and I am continuing to improve and get stronger every day.

Looking back now at the past 1.5 years, it’s incredible to realize that I was literally cognitively impaired, which then manifested in feelings of extreme fatigue, dissociation, and not being able to do anything. The neurological problems were the scariest part, along with being at a point where I was coming to terms with the fact that this could be my life forever now.

This experience has made me really appreciate normalcy – just going for a walk, going to work, getting a coffee, and coming home from work and not falling asleep in my food. I can even enjoy the taste of food again – I’m on rainbows now.

Thank you wishes from Gareth to Dr. Trodd

Lastly, I want to say that Dr. Trodd was always supportive and never invalidated or minimalised my symptoms as "all in my head." He was always patient and methodical in terms of ruling out different things and getting deeper and deeper with diagnostic tests.

Even when a lot of the first-line tests came back negative, Dr. Trodd remained persistent, insightful, and supportive enough to run tests like S100B, and push for treatments like IVIg. I'm incredibly grateful to Tim for sticking with me throughout the experience. Aside from the obviously beneficial clinical interventions just knowing you've got a medical professional on your side, fighting your corner makes the experience so much easier.

Are you experiencing Long Covid symptoms? We are interested in hearing about your experience. Reach out to us at longcovid@otandp.com.