Hacking my way back to health from long covid
By: Joris Van Gelder
Tags: Long Hauler, Innovation, Long Covid, Lean Startup

This is an account of my recovery from Long Covid. Although I will describe what helped me to recover, this is not medical advice as I’m not a medical professional.

Today I’m “celebrating” my COVID-19 anniversary. Thankfully I’m on my way to recovery by now but that didn’t happen automatically. Firstly I couldn’t rely on my doctors' advice because they just didn’t have any answers yet. Secondly, the way long covid manifests itself seems to be different for everyone. Therefore, I also couldn’t blindly rely on advice from other long-haulers.

I have a background in innovation so I decided to apply some of the techniques from this field to quickly figure out what works and what doesn't to recover. This worked well for me so that’s why I’m sharing my story with you today as a birthday treat :)

Background

Acute phase and initial recovery

On Tuesday morning the 11th of March 2020, I presented the outcome of an intensive project to my client. The presentation went smoothly and I felt great although I was short on sleep and high on adrenaline. This all changed by lunchtime, I could hardly finish my food and went home a few hours later because I just couldn’t concentrate on my work anymore.

The days after I got more and more sick with new symptoms every two days. I was bedridden for 5 weeks and it took me 2 months to start working again. Recovery had finally set in and in the months of May and June, I gradually felt my energy coming back. By the end of June, I was able to make full days at work again and even pick up my ashtanga yoga practice. I still had the occasional relapse but they never lasted longer than a day or two so I figured I was recovered.

Relapse upon relapse

My recovery came to halt after I visited two different friends in a day and had two glasses of alcohol. I had a big relapse the day after but this time I couldn’t seem to shake it off. In the weeks that followed, it became increasingly difficult to keep up with work. I took the Fridays off but that didn’t help, I just stayed tired all the time.

In August I decided to take my annual leave to get some rest and recovery. The opposite happened: a week into my leave I had a rich meal, which set off a series of digestive problems that made it almost impossible for me to eat for the entire month of September. I lost a lot of weight and many of the symptoms like headaches, shortness of breath, and brain fog returned. I felt almost as sick as I did in March.

Why this is also a story about innovation

The medical community struggles to get a grip on COVID-19

In the course of the last 12 months, I’ve seen almost a dozen medical professionals including several GP’s, a pulmonologist, a nutritionist, physical therapists, to name a few. During the more disappointing conversations, I spent most of the meeting trying to explain that I was not suffering from burnout. During the best conversations, I got marginally useful advice, e.g. on how to divide my energy during relapses.

The message I kept hearing over and over again was “we just don’t have any answers for you right now. We might be able to tell you more in two years from now when the research is in. Until then try to relax and hope your symptoms will just fade away.”

After suffering from a wide range of debilitating symptoms this was not the message I was waiting for and I grew increasingly frustrated with the medical professionals I was talking to. I would like to emphasize that I believe most doctors had the best intentions. They were listening carefully to my long stories of symptoms and relapses and they took the time to think along with me. They simply didn’t have any answers.

Later on, I discovered there were specialists around who did have some promising hypotheses about causes and treatments. Their knowledge just wasn’t picked up and applied by the community as quickly as it does in say the design- or the startup world that I’m familiar with.

The online community takes charge of its own recovery

Right after the first COVID-19 wave in march, online communities of long haulers started to emerge. I’ve found the community on Reddit especially helpful. Initially because reading the stories of other long haulers gave me validation and consolation. I also discovered that people were using their own non-medical background to take charge of their recovery.

The most inspiring example is Gez Medinger who uses his scientific background and his filmmaker experience to sift through research papers, interview medical researchers, and present his findings on his youtube channel. The work that Gez is doing has been invaluable for me and thousands of other long-haulers. It also inspired me to think about how I could make any kind of contribution to the long-hauler community.

So what I did, in a nutshell, is to scan sources like Gez’s youtube channel for plausible hypotheses and figure out how to test quickly and reliably whether those hypotheses applied to my own condition.

Iteration 1: The NAD+ deficiency hypothesis

November — December

Hypothesis

Thanks to the Reddit community I discovered this article. The article suggests that the covid virus undermines metabolic pathways that produce NAD+, which is a key source of energy for the body. The result is a loss of energy, depression, covid toes, and a long list of other things. If you want to know more about this theory, I suggest watching the interview Gez did with the authors of the article.

The article accurately described my symptoms, provided a feasible treatment, and seemed passably legit: The suggested treatment consisted of taking a number of supplements that were widely available, affordable, and had few risks for serious side effects. So I decided to give it a try.

Experiment

I decided to take the stack of supplements that were suggested on several different sites: nicotinic acid, zinc, vitamin D, vitamin C, and quercetin.

The supplements were far from the first thing I tried in my efforts to recover. I’ve tried Wim Hof breathing, yoga exercises, a vegetarian diet, vitamin D supplements, daily walks, and meditation. All of those things could have helped but nothing really moved the needle in terms of my overall recovery. More importantly, I was still suffering from relapses. I assumed these relapses were linked to overexerting myself with activities or exercise, as this is what I was reading online, but it was increasingly difficult to link my activities to my relapses.

What I was hoping the supplements would do is give me a bit more energy during the day and decrease the risk I would overstrain myself and get a relapse. But in order to get more insights into this, I needed to find a way to test my energy usage and exertion.

Initially, I planned to get a Fitbit or an apple watch. Then I discovered that some people were using @WHOOP to track their energy levels. Whoop is a smart band that measures your heart rate, activities, and breathing. It is worn 24h per day, and it uses data analytics to tell you every morning whether you’ve recovered from the day before and to what degree you are ready to adapt to strain.

Athletes use this information to plan their training regime. I initially used it to plan my daily activities since my original goal was to not overexert myself when I was low on energy. Later on, I started using it to analyze my daily activities and this proved to be a much more powerful way to promote recovery: Now I had a clear and quick way to get feedback on my energy levels, I felt confident to try out and abandon different treatments in more rapid succession to discover what really works.

Learning

So did the supplements help my recovery? This seemed to be the case because I felt more energetic the day after I started using the supplements. At the same time, the data wasn’t conclusive. There were two reasons for this: Firstly I was impatient with the supplements. I should have waited on using the supplements for a month so that I could build a baseline in my WHOOP data. Since I felt horrible I couldn’t bring up that patience. More importantly, although my overall energy seemed to have improved, the supplements didn’t help with the random relapses.

Here’s where the measurements became interesting; after a few weeks of using the WHOOP strap, I still could find no correlation between exertion and relapses. This convinced me that the relapses must have been triggered by something else.

Iteration 2: the MCAS hypothesis

December — January

Hypothesis

As I grew increasingly suspicious of the food I was eating, Gez presented a new study on his youtube channel. This time he linked the long covid symptoms to Mast Cell Activation Syndrome (MCAS). MCAS is a rare disease where a part of your immune system is overactive. If you suffer from MCAS, your immune system can be triggered by all kinds of things but the most common trigger is histamine. Histamine is a hormone that is naturally in your body but too much of it can cause all kinds of inflammatory reactions, from brain fog to shortness of breath. We also get histamine from our diet. Especially aged, fermented, and leftover food is rich in histamine.

Experiment

The histamine hypothesis was very exciting to me because I finally felt I had the last piece of the puzzle. Looking back I could link a lot of my past relapses to histamine-rich meals. So I decided to cut out histamine and also dairy and added sugar for good measure. Going on a histamine diet did mean I had to go back to eating meat as a lot of plant-based foods that are high in protein are also high in histamine.

the spreadsheet I used with a date, foods, health status, suspicious food, general repairs, and safe recipe recommendations.

I soon learned that eliminating histamine wasn’t simple. I found dozens of lists for histamine-rich- and safe foods and none of them matched the other ones. I decided to stick to the most user-friendly one: the food intolerances app. And on top of that keep my own food journal in google spreadsheets. In this spreadsheet, I documented all of the food I ate in a day and matched it to how I woke up the next day. This helped to flag and eliminate food that triggered symptoms and vice versa, test and includes some foods that were on the histamine-rich list.

Learning

This time the data told a clear story. My overall recovery scores went up significantly. I also noticed I got a lot more energy: in November I started working but couldn’t make more than 2 hours per day. By the end of January, I was almost back to full-time. The relapses also got fewer and shorter. More importantly, I could find a plausible explanation for the relapses now. It usually had to do with a suspicious food item or something I prepared in a way that increases histamine, e.g. by slow cooking. What was interesting is that there were also some foods like millet, that weren’t on any high histamine list but apparently I do have sensitivity for this. Other foods that are on the risk list, such as bananas are completely fine for me. So it really pays to make your own list.

I felt I was finally getting my life back. Being able to work again and to enjoy it was huge. But also being able to make plans again without the fear of random relapses was a big relief.

Iteration 3: The leaky gut hypothesis

January — February

Hypothesis

I was convinced by now that histamine played a central role in the symptoms. However, histamine overproduction is a symptom in itself as well. That meant if I wanted to take another step in improving my recovery, I had to dig deeper. I saw two directions to explore: my immune system and my gut. Both directions seemed complex but I decided to go with my gut 🙂 in the hope that some further dietary changes would create an effect.

Experiment

With the help of an orthomolecular specialist, I decided to run a blood test to scan for food intolerances and a stool test to check histamine levels and the state of my gut microbiome. The results were that I had several food intolerances, the immune system in my gut was impaired and the resident gut bacteria that were measured seemed to have been decimated, but the histamine levels in my gut were normal. I got the advice to avoid the foods that were flagged for intolerance, follow a rotation diet, try to get more fiber in my diet, and add twenty-odd supplements to my already sizable stack.

Incorporating the rotation diet was pretty complex. It meant I could eat any given food item only once every four days. And I had to combine it with my existing low histamine diet and avoid the foods that were flagged in the blood test. Adapting the diet took me a few weeks, the spreadsheet I’ve shown above was really helpful as well as using a nutrition app. The spreadsheet helped me configure weekly menus and the nutrition app helped detect where my new diet was out of balance. For instance, I was eating way too many nuts and fruits in the first week.

When I started using the new supplements, I noticed a drop in energy and also in my whoop data. I eliminated the supplements that seemed to increase my histamine and kept a few minerals and a low histamine probiotic. See below if you’re interested in my current stack of supplements.

Learning

This time I didn’t notice any big improvements. Also, I became less confident in the orthomolecular diagnosis and treatment as I learned more about it: I found that both the blood test (IGG) and microbiome test were criticized for being inaccurate and lacking a scientific basis.

On the bright side, I did get an answer to my original hypothesis: the histamine levels were probably not caused by my gut. So that makes the immune system hypothesis more likely.

Also, thanks again to Gez I learned that the misbehaving mast cells in my immune system have a lifespan of half a year and that the mast cells who grow up in a more calm environment are less likely to misbehave. That seems to make the path for complete recovery a waiting game. Turns out that not everything can be accelerated.

What probably helped as well

But that I didn’t test.

Yoga

I’ve been practicing yoga for the last few years and I love the intensive ashtanga practice to both challenges and calm my mind and body. Ashtanga has been out of the question since I have long covid but what really helped me are the gentle classes of yoga with Adriene. Once I stopped comparing the yoga classes of Adriene with what I was doing before. I found them relaxing, soothing for my body. The added bonus is that some of the classes are so gentle that I could even follow them on some of my worst days.

Wim Hof Method

I started doing Wim Hof breathing when I was in a really low place back in September. I had constant brain fog and my days were divided between lying in bed and lying on the couch. Wim Hof's breathing had an immediate effect because in the hour after my head would be clear and I had the energy to walk around.

I kept practicing Wim Hof the months after but by itself, it didn’t seem to be the panacea it is sometimes made out to be. An important note here is that I didn’t practice the cold showers because of my already compromised immune system.

Reframing the situation

Most important amongst the things I didn’t measure but do recommend is changing your mindset. In hindsight, I made the situation into a sort of game for myself. I would read books on self-development, especially on how to deal with hardship. The ones that resonated most with me were Solve for Happy and Man’s Search for Meaning.

I was inspired by the examples in the books and the strategies the authors applied not just to overcome the hardships but to use them to their advantage in some way. That is why I decided that this is a perfect time to put some of the more interesting theories to the test and I came to see every new relapse as an opportunity to play a mind game.

The result was that I had very few occasions where I felt I was mentally suffering and I even think I experienced personal growth as a result of long covid.

Getting started

Try one hypothesis at a time

There’s one more tactic I’d like to share with you. Try one hypothesis at a time.

Back in September, before I approached my revalidation systematically. I had a long to-do list every day of things that might help. And with every new hypothesis, the list of activities, dietary guidelines, and supplements grows. Eventually, this simply becomes unmanageable and stressful.

That’s why I highly recommend you start with one hypothesis at a time, determine whether that has an effect, and then decide to either build on it or try something else. To give you guidance on how to determine what’s the best hypothesis to start with. I’ve borrowed again from my day job and made a decision-making canvas that is based on those that are used in the startup industry.

Recovery Canvas

Based on the business model canvas I made a simple tool that helps you to determine whether a hypothesis is interesting to you and set up your learning iteration at the same time.

You start by writing the hypothesis in the top-center and determine whether it’s plausible to you. Perhaps more important is the source of the hypothesis, is it trustworthy and is it supported by secondary sources? Then you determine whether the hypothesis addresses the symptoms that are bothering you most. If not, it might be better to start with another hypothesis. Over on the left, you determine whether the suggested treatment is clear, feasible, what the risks are, and which support you need to follow it (such as consulting a doctor). On the bottom side, you determine whether it is measurable. You start by figuring out a way to track your treatment. In the case of supplements, this might be unnecessary but if you change your diet or add exercise it’s really important to track what you did when. At the same time, you want to measure how the treatment affects your symptoms. In this article, I’ve written the whoop strap, but there are many other ways to measure how treatment impacts your systems. E.g. I’ve found the color of my stool also a pretty reliable source of feedback: the lighter my morning stool, the less energy I have during the day. Lastly, you determine how and when to analyze whether the treatment has worked. E.g. in my MCAS learning loop, I’ve identified foods that consistently caused systems and that eliminating these foods improved my health.

Conclusion and reflection

My body feels like it’s recovering

Although I haven’t found one single silver bullet in the last months, I’m really pleased with where I am. Until December I was largely incapacitated by the disease and never sure when the next big relapse would hit me. Now I’ve been able to pick up many parts of my life again. I also feel that my body is starting to heal itself: I’m gaining (healthy) weight again and I’ve been able to do yoga at an intermediate level again.

The only symptom that is still bothering me is insomnia. I wake up in the middle of the night and it takes me hours to get back to sleep again. I’m pretty sure this is the result of an overactive immune system that produces adrenaline and histamine. So I’m starting another iteration with different histamine blockers for that. Other than that I’m expecting no step changes soon. I’ve managed to give my body rest and now it can go to work to recover.

A problem that you don’t learn from is a missed opportunity.

Whenever I run into a huge problem during a project, my first instinct is to fix it. At the same time, I’ve learned that the bigger a problem, the more you can learn from it. So especially when things go horribly wrong, it’s a great opportunity to learn new things.

I’ve used this principle to reflect on the past year and amongst the misery of a year in bad health, there were many blessings. Looking back on my life before covid, there were moments that I felt stuck on a roller coaster: Having an exciting ride but not much influence on where I was going.

I started to read up on topics like minimalism and stoicism and I learned that letting go of things in your life was an important requisite to experience more freedom and joy. Reading about something and doing it are two completely different things though.

Long-covid has forced me to let go of things that I was enjoying but could also feel like a burden. One year into Covid I feel happier than before I got sick. On the one side, I’ve let go of many of the habits and expectations that made me feel stuck. On the other side, I had the space to make positive decisions on the things I want to keep in my life.

This brings me to my conclusion: Recovery is a matter of perspective. If I relate my physical condition to the life I was living, I might be 60% recovered. But when I relate the physical condition to a life that I’m happy with, I’m almost at 100%.