After Getting COVID, Part 2

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Disclaimer: Everything in this After Getting COVID series of posts is YMMV (Your Mileage May Vary). I’m not a doctor. I can tell you what I have experienced, read, heard, etc. but I cannot promise what it will do for you. I also don’t know your personal health history, what you already take or what you already do. If you have contraindications, I’m not the right person to recognize that and tell you. Your pharmacist and/or doctor can help you check for those before you try something.

Information Sources

There is no single place you can look to keep up with information emerging about COVID and how to cope with it or its aftermath. Not all the information is worth taking in. Snake oil merchants abound. Conspiracy theorists and people who are simply whacky abound.

Nevertheless, there are people with intelligence and skills who keep an eye on some of the flood of information and try to distill important factual material for the rest of us. Find a few and follow what they post.

A few of mine include, in no particular order:

• LongCovidPharmD in Substack (and Twitter/X for shorter notes). She’s a pharmacist. She has Long COVID herself. Her posts can be quite technical, show possibilities you won’t find elsewhere and flag potential drug interactions even your local pharmacist might not know about. I’m a paying subscriber.

• Dr. Deepti Gurdasani. She’s a clinical epidemiologist and a good info source.

• Cat In The Hat. She loves to analyze data and is good at it.

• Dr. Katelyn Jetelina. She’s an epidemiologist. Sometimes I don’t have as much faith in her data sources as she does, but I want the perspective of her training. I’m a paying subscriber, but she’s considering whether or not to continue posting so she may drop out of my list.

• Conor Browne. He’s a biorisk consultant specializing in COVID impacts and pulls no punches.

• Dr. Claire Taylor. She’s a neuroscientist with a special interest in Long COVID, ME/CFS, Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS).

• Dr. Noor Bari. She’s in my list for a sense of what’s going on with infectious diseases in Australia. Otherwise I’d be hearing from USA, UK, Canada and Ireland with only small bits from elsewhere.

• Prof. Christina Pagel. She’s from Independent SAGE (Scientific Advisory Group for Emergencies) in the UK, a group whose advice about the pandemic turned out to be a smart counterbalance to official SAGE.

• Cat Herding Science Nerd is not one of my heavy duty sources, but does highlight some good articles. She pointed out the GVS Elipse P100 respirator (face mask) does not contain any metal and can be safely worn during MRI scans.

• Dr. Ziyad Al-Aly. He testified at the recent Senate hearing, so you’ve heard him.

There are more in my list but let’s not make it overwhelming. The people I mentioned cover a range of communication styles and areas of focus. If you look at some of these, the ones who suit you converse online with others who are compatible. That will help you build your own list of people with information you want.

Where to Start?

When I described a methodology you can use to whittle away at whatever is wrong after a bout with COVID, I mentioned choosing what is causing the most trouble and starting there. You can refine that general rule for deciding what to focus on next. While weighing options, consider which one is likely to be most fundamental, something you may need to improve before you can try to make gains anywhere else.

Let’s say your top two issues are an immune system that isn’t working right any more and low energy. You’re catching everything that comes along and getting sicker with it than you would have before COVID. Common colds, infected cuts, everything. You’re also fatigued in a way you never felt before. It isn’t like what you used to feel after a long hard day or a big sports contest. It’s deeper, more fundamental, like your engine doesn’t have any fuel. (This combination is a common scenario after a bout with COVID.)

You could justify choosing either as your initial focus. You could reason that if your immune system is working like crazy to get hardly anywhere, surely that must be eating up your energy. But in that situation, I would choose to focus on energy first.

Why?

Remember my admonition to rest a lot and not push yourself? When we drill down in search of fundamental reasons for such problems as Post Exertional Malaise (PEM), we end up looking at energy production. You need energy to do anything and everything. When you don’t have enough energy, your motor can’t run.

When you don’t have enough energy, your immune system can’t work properly even if it is in fine condition.

That’s why I would choose to address low energy first. While doing that, I would do what I could to avoid making my immune system do extra work. Some challenges would come along despite my best efforts, but I could fend some off. With the opposite choice, I wouldn’t be able to magically invent more energy to fuel my immune system no matter how much I healed it.

I will generally not repeat possibilities I posted about in Part 1, so you may want to peek at that again for a refresher.

Energy

With all of this in mind, let’s consider bolstering energy.

You may be tempted to guzzle energy drinks, coffee or tea. Caffeine, “stay-awake pills” and similar substances rev your adrenal system. When you have a health issue that requires aggressive rest, revving you up is likely to make you worse instead of better. It’s somewhat like stomping on the accelerator in a car that has blown the head gasket in its engine. It’s a great way to ruin an engine.

Don’t be surprised if you find that even your usual amount of tea or coffee makes you crash after the initial rush wears off. If that happens, it may not be permanent exile to the land of decaf. Improving your baseline energy level may allow you to resume regular tea or coffee someday.

Physical activity is not the only thing you do that burns energy. Strong emotion (including happy excitement) or mental exertion revs you up too, so it can make you crash much like physical exertion does.

Your brain is a big consumer of energy, so mental work can crash you. Processing sensory input, conversation, trying to look like you feel better than you do for interactions with people… All of these demand energy.

If you are depressed, remember it’s perfectly understandable to feel down about being sick a lot. This is true whether you officially have Long COVID or whether you are catching everything else that wafts by after COVID bashed your immune system or you’re stuck with organ damage left behind by a bout with COVID.

Depression can be related to your energy level, too. Your body is clever about energy conservation. When there isn’t enough to go around, it scales back or shuts down non-essential functions. Being able to feel happy is not as essential to survival as breathing and pumping the heart, so guess what gets scaled back first? Antidepressants can help with some forms of depression but can’t fix this. Improving your energy level can fix it.

Energy generation within your body is complex. We touched on it briefly in Part 1 when I mentioned SARS-CoV-2 (SARS2 for short) has been found to deplete NAD+, which is involved in generating energy. But what is in charge of orchestrating and carrying out energy generation?

Mitochondria serve as power plants within your cells. When you push damaged mitochondria too hard, they can become even more damaged and perhaps even cause adjacent damage. SARS2 damages mitochondria.

Mitochondrial DNA (mtDNA) is separate from the main genome and comes entirely from your mother. You and your mother share vulnerabilities and strengths in your mitochondria. If your mother got COVID and seems to be having more trouble than most people with her energy from then on, logically there is a chance you may be at risk of having the same happen to you. It works in reverse too. If you have a deeper than average lack of energy after COVID, it may mean your mother is at risk of having the same happen to her.

So… what can you do to help your mitochondria with their job of generating energy when something in energy production (the mitochondria themselves or other elements of the cycle) isn’t working well?

Co-Enzyme Q10

During last week’s committee hearing about Long COVID in the USA’s Senate, a widely used supplement for boosting energy was mentioned: Co-Enzyme Q10.

I first stumbled upon Co-Enzyme Q10 (often abbreviated CoQ10) in a 1992 Texas Monthly article Heartless Behavior. (The article’s title stems from a raid by the Texas Department of Health to remove CoQ10 from the shelves in Whole Foods in Austin.) The article explained how CoQ10 is involved in energy production. It then discussed two cardiologists who had been using it to treat their patients, to good effect.

Although I don’t have heart disease, I operate on a thinner energy margin than most people. After reading that article, I tried CoQ10. I started with 10 mg capsules. At 30 mg/day, my baseline energy level improved slightly. My sweet spot was 60 mg/day. As I’ve grown older, my sweet spot has gradually moved up to higher dosages. For day to day functionality, it’s the most important supplement I take. It’s a morning pill. Taking it too late in the day keeps me from going to sleep.

Some people don’t do well on it. Even at a low dose, it makes them feel like their heart is racing and they (understandably) feel hyper-anxious, even panicky. If you decide to try it, start small the way I did so that if you have a scary reaction, it won’t be too extreme. Also, if you have a reaction like that, don’t take it again.

If it is something you need (as it is for me), after you find the dosage that works best for you, getting capsules with a slightly higher dosage would be a waste of money. Your body excretes any extra beyond what your body can use and doesn’t store it for long term use.

I mentioned taking it as capsules. Most of it on the market is gelcaps (softgels). Maybe those will work for you, but when I take it in gelcap form, I’m asleep by noon. Not literally, but it’s almost as though I took nothing. When I take it as a golden powder in capsules, it works beautifully. Perhaps gelcaps use a carrier substance I don’t get along with, apply heat to seal the gelcaps (CoQ10 is easily destroyed by heat), or involve something else I’m not aware of that makes them useless for me. The same could be true for you. Annoyingly, in the UK supplements packaged as gelcaps are often labeled as capsules. My solution to that has been to stick with brands that I find really are in capsules.

Beclometasone Nasal Spray

Beclometasone is marketed as Beconase, Nasobec and Pollenase. It’s a nasal spray intended to treat allergic rhinitis and hay fever. That’s what my doctor in the USA prescribed it to treat.

It had the unexpected effect of noticeably improving my energy level. I’m not at all the only patient to get this effect, but I only know that because I used to mix with so many chronically ill people in the Forum. I’ve seen no studies about it. My doctor never could explain why it does this for me. It’s a cortisone based spray. In theory, not enough should get absorbed by the nose to affect cortisol levels systemwide.

It takes about 5 days to ramp up and 5 days to fade away after it’s discontinued, so this isn’t something to use only on days when you feel like there’s too much pollen in the air. If you need it, this is something to take throughout allergy season.

I don’t know whether it is still prescription-only in the USA. It’s over the counter in the UK. Every year or two I try to discontinue it. So far, I still need it.

Diet and Dietary Supplements

We don’t yet know all the ways in which SARS2 damages metabolism. We do know a substantial proportion of Long COVID patients (some estimates say about half) heavily overlap with ME/CFS.

Some people, including many doctors, say this differently from the way I put it. They say as many as half of Long COVID patients have ME/CFS. Different mechanisms can happen to produce similar symptoms, and I’m concerned that slapping an old label on a new disease could cause a blind spot among researchers.

But the overlap in symptoms does indicate Long COVID can include problems in similar areas, even if the exact nature of the trouble might not be quite the same.

Some Long COVID and ME/CFS patients lose a lot of weight, gain a lot of weight, or do both in sequence (e.g. lose weight, then gain weight). This can happen despite efforts to eat to counteract the trend. Their metabolism is definitely out of kilter.

Some also develop sensitivities to foods and drinks that used to be okay. Alcohol intolerance is common, for example. Because intolerance is often not truly an allergy, experimenting with your diet is the only reliable way to find out what foods work best for you. “Best” is a broad term here. You’re looking for foods that don’t annoy your digestive tract, don’t overtax a system (e.g. pancreas, gallbladder, liver, kidney), and do seem to help you have a little more energy, sleep better, get through the day better, and/or feel less unwell.

The diet that works best for you might not look at all like what is recommended for the average person. Don’t try to make yourself fit standard dietary guidelines. Those are for people whose energy production is intact and normal.

What do we know about how energy production is damaged in ME/CFS patients? Here are some highlights:

• Aerobic metabolism does not function properly. ME/CFS patients rely heavily on the backup mechanism, the anaerobic metabolic pathway, which is much less efficient.

• Many ME/CFS patients have difficulty with carbohydrates and fare better with a diet higher in protein. This may not seem to make sense in light of malfunctioning aerobic metabolism, but it’s common.

• Calcium utilization in metabolic pathways is abnormal.

• Early studies of ME/CFS found that supplementing magnesium improved energy. This makes sense alongside calcium utilization, since magnesium is involved with that. (Magnesium was injected to get around difficulties boosting it by taking pills. Taking too much orally causes diarrhea.)

• Supplementing NADH, which is involved in energy production, improved energy levels in patients in at least one small study.

• ME/CFS patients tend to have a ratio of omega-3 to omega-6 fatty acids that is lower than usual. Some patients take fish oil supplements to boost their omega-3 levels. (Caution: This can increase bleeding, especially if taken alongside blood thinners.)

• Cholesterol levels in some ME/CFS patients go high. I’ve even known a patient who was already on a vegan low fat diet whose cholesterol went sky high and wouldn’t come down. She also became fat despite her diet. She was a high functioning patient, still able to work and get around, so it wasn’t deconditioning. It was the Dratted Disease. Remember her if anyone, including a little voice in your own head, tells you that the changes in your body are your fault.

These are a few highlights. There are more such details if you dig in. Each suggests a portion of metabolism that might also be broken after a person has COVID. It need not be broken in the same way to produce similar symptoms.

The more someone with COVID in their past overlaps with ME/CFS, the more I suggest it is reasonable to look at what patients in ME/CFS groups talk about among each other. They tell each other what they have found helpful. Those groups have often welcomed Long COVID patients. I’ve barely scratched the surface here. They’ve already spent years, in some instances decades, searching for anything that might gain a bit of improvement. Overlapping symptoms hint at overlapping physiological damage, which in turn hints at potential overlap in treatments and supplements that may produce some gains (as always, with the caveat YMMV).

Omega-3 fatty acids are an example of a dietary supplement that helps some ME/CFS patients and looks promising for some COVID and Long COVID patients. Scientists have found that people who have a higher level of omega-3 in them tend to have a better outcome if they get COVID than people with lower omega-3.

Studies aren’t far enough along to prove whether taking omega-3 supplements can help Long COVID patients. However, there are case studies of patients who have improved with it. There are also some studies from years ago showing it is helpful with patients who have Post Viral Fatigue Syndrome (PVFS). If you are interested in trying this, I recommend reading the entire post at this link to avoid wasting money, effort and opportunity on the wrong dosage or poor quality supplements.

I have begun to see first person anecdotal reports of the amino acid taurine (not homotaurine) helping some Long COVID patients bring their energy level up. Notably, each report of some improvement taking taurine has combined it with something else: metformin, berberine or nicotine patches. Taurine is an ingredient in energy drinks, but it is not a stimulant like caffeine. It support the brain, heart, nervous system and immune system. As with CoQ10, if you try it, start small. Cut tablets in half or in quarters if necessary.

So… you need not start from scratch. You can start with whatever has already been learned about another disease that heavily resembles at least part of the flavor of Long COVID you have. Odds are that the most similar other disease is ME/CFS. Picking up information and ideas from such patients can save you years of wandering down blind alleys.

Sleep

Sleep disturbances are common in Long COVID. This is another area of strong similarity to ME/CFS. The nature of the trouble with sleep varies. It can be insomnia, or sleep that seems long enough but from which the patient awakes feeling exhausted and with brain fog, or a profound need for enormous amounts of sleep, or a combination of these, or other difficulties.

If you can’t get decent sleep, how can you feel energized, let alone heal?

With Long COVID, you can do everything “right” about preparing to sleep and still have insomnia. No caffeine after noon, doing only chill-out things in the evening, whatever—it isn’t enough.

Taking something to help you sleep can be tricky. You may be more sensitive to some substances than other people. (This includes more than drugs. Many Long COVID patients become completely unable to tolerate drinking anything alcoholic, for example, as mentioned in the section about diet.) Sleep aids can have a sedative effect that includes depressing your breathing. You want to keep breathing to stay alive!

Drugs that other people take just fine could be too potent for you. With a sleep aid, you may want to start with a dose that is nowhere near as high as a normal clinical dose and only increase the dosage if you get along well with it, like what I did with CoQ10.

Even with that strategy, drugs may be too strong for you—or you may be wary of becoming too dependent on them. Some sleep-aid drugs are habit-forming.

In that case, there are over-the-counter medications and supplements you could try instead. One of my doctors used to take the antihistamine diphenhydramine, marketed as Benadryl, when she needed help to go to sleep. Benadryl makes some people drowsy.

On the European continent, valerian root is popular as a sleep aid. You can get it in capsules. Store it away from anything such as clothing that could absorb odors. It smells as pungent as dirty socks and that odor can get into fabric from a closed bottle. It’s potent as a sleep aid, a little too much so for me, but it’s effective.

In the USA, the hormone melatonin is popular as a sleep aid. For some reason dosages in the States have gotten higher over the years. On the shelves, I see 5 mg and up. Personally I can only tolerate 1 mg, and even at that dosage I’m groggy for a while in the morning on the rare occasions when I use it. Remember, it’s best to start small, so start at 1 mg and see how it goes.

Drug Studies

Correcting injuries to mitochondria is such a deep problem, it may need drugs. Supplements, dietary adjustments and anything else we can do for ourselves could take a long time and we don’t know whether our bodies can fully repair the damage on our own.

Depending upon how adventurous (or desperate) you feel about repairing broken energy production, you may be able to find and enroll in a drug trial. This is not an easy route to getting better.

Patients with a wide variety of diseases have participated in drug trials. The outcome isn’t as simple as “either it will help you get better or it won’t.” The sad truth is that sometimes a drug trial backfires and makes people sicker. But when a drug trial does find a good new treatment, participants are the first to get it and then it may become available for other patients too.

There has been some effort to mend mitochondria damaged by COVID. UK researchers thought a metabolic modulator called AXA1125 would be a treatment. Participants got slightly less fatigued over the course of the study, but it isn’t clear whether that had anything to do with the drug rather than simply the passage of time. AXA1125 didn’t improve mitochondrial respiration, which is what the scientists thought it would do, so it was a disappointment.

That’s an example of how it goes. At the other end of the spectrum, an uncle of mine was involved in studies of new treatments for a particular type of cancer. Those treatments have now replaced what used to be standard. They are more effective and not as hard on the patients.

By getting into a study, you might get lucky… or you might not.

This should give you a start on looking for ways to improve your energy level.

The next post in this series is After Getting COVID, Part 3.

Note: This post was edited 2024-06-18 to add a couple of links.