My experience of Long Covid

How I overcame Long Covid

Hearing Profile without Long Covid

Hearing Profile with Long Covid

Doing the test lessened the severity of the tinnitus. Some days, I’d repeat the test every hour. My other symptoms stayed constant: fatigue, tinnitus, chest inflammation and gastrointestinal upsets.

In October 2020, I went to hospital to give a plasma and platelets donation. This process involves pumping out your blood, centrifuging it to gather the plasma and platelets, then returning the remaining blood back to you. A longer and more complicated process than simple blood donation, it provides valuable support to patients going through cancer treatments. Pre-covid, the procedure had run smoothly for me. But on this occasion and the next, I could not complete the process. Although there are several probable reasons and coincidences cannot be ruled out, maybe the damage by covid had made my veins too weak to support the pumping. Around that time, I also volunteered to have my blood tested for antibodies for the therapeutic antibody programme. My levels of antibodies were too low to be used. My symptoms slowly improved and the terms short and long covid appeared in the public lexicon. I compared these to other post viral episodes of extreme fatigue. Indeed, a colleague who’d caught Dengue fever referred to the overwhelming waves of tiredness that would hit him post infection.

I got my first vaccination in March 2021. There was no obvious improvement in my symptoms. But after my second jab a few months later in May, within about two weeks, all my symptoms had gone. Hallelujah! This had been reported off and on in different places. My primary sources of information came through a long covid Facebook group, Twitter and the Zoe group run by Imperial College London. Feeling overconfident, a few weeks after being back to ‘normal’, I played tennis. It was only for an hour, but perhaps combined with getting cold afterwards and having a drink, my symptoms returned with a flourish. Although disheartening, I had hoped that with time or with another jab, the symptoms would once again disappear. But following the third jab in November 2021, the Pfizer rather than Moderna vaccines, I felt no improvement.

I caught Covid again in December and had only mild symptoms. However, my long covid symptoms continued, usually worsened when I did too much, whether this be brain-sapping work or exercise. In March 2022, I caught Covid again. Likely the Delta variant. It was mild but did scupper a planned trip away. I also developed one new long covid symptom, a lower backache, each morning when I woke up. When the back ache first appeared, it was so severe; I struggled to get out of bed. At first, I didn’t connect it to the covid infection. I knew I slept on my front, so I thought perhaps the mattress was finished. But I checked, it was just a few years old. I changed pillows, nothing. But self-reporting through the Zoe app revealed that others also had the same new symptom. Why the lower back? And why did a vaccination cause the symptoms to dissipate? Is there a connection between other conditions with similar symptoms, like chronic fatigue syndrome?

When we’re infected, an immune reaction is triggered. The body’s job is to try every tool in its box to save us. Most of the time, it works, and we survive. Sometimes, the body recognises something foreign as dangerous when it really isn’t. Take hay fever, which I get. The body sees pollen as something harmful and produces a response that leaves us with itchy eyes and an itchy throat. We can remove these inflammatory symptoms by knocking out the molecule that’s triggering the reaction - histamine. Some long people living with covid found antihistamine helped with their symptoms. Many of the symptoms of long covid appear to be inflammatory - an increased blood flow to regions of the body producing tightness or heat.

Simplified View of our body’s defence systems

We now understand that Covid caused physical destruction of cells - anything with an ACE 2 receptor. This is a physical assault. If many of the long covid symptoms are inflammatory and localised, it makes sense that these would occur in response to what the body now has learnt is a new type of physical insult. I got headaches and brain fog if I did too much brain work. It was impossible to sleep if I walked too much. Anti-inflammatories like ibuprofen appeared to work, but that’s not a long-term solution, because of potential side effects. Our body things physical or mental effort is an injury and mounts an extreme inflammatory response, when only a minor one is needed. How could we reset the body’s recognition error? Can we reset it or re-educate it?

There are methods being trialled to create similar effects. Faecal microbiota transplant is an effective method to treat persistent Clostridioides difficile infection. Faecal bacteria and other microbes from a healthy individual are transferred to the affected individual. For covid, the closest method we have is the use of therapeutic antibodies from previously infected individuals. But what about something we already have seen may work - vaccines. If long covid is a pattern recognition error - it's misinterpreted the impact of ‘excess effort’ - physical or mental - as an ‘infection’.

So, we could imagine the virus and its effects producing a response like a code. Let’s say it's A B C D E F G H I. Our body rapidly creates a matching response. If we’re fit and healthy, we create an identical match: A B C D E F G H I and the virus is wiped out and we return to a steady state. But perhaps for various reasons, age, or ill health, we don’t quite get a match: A D F G H, we’re unwell but do well enough to recover. We stick in our memory banks that something looking like A D F G H is an attack and if respond in kind; we get rid of it. But what if we take the dog for a walk and it runs off? We chase it and get it back, but it was a bit of an effort. It produces an inflammatory reaction A C E G H. This doesn’t look much like covid, but it looks like what we stored as our successful response, A D F G H. So, we mount our defence to something that doesn’t need it. We go overboard, creating inflammation and the resultant negative effects, e.g., fatigue, when unnecessary. What if we could re-educate our immune system? Well, a vaccine does that. We tell our body that the virus looks like A B C D E F G H I, so realigning its targeting system. When we now take the dog for a walk (A C E G H), we let it go.

If vaccines might be a simple and cheap - we’ve already sunk costs of making them and the delivery is straightforward - shouldn’t we try them as therapeutics? This would require a change of thinking. Vaccines are preventative, they’re not meant to be used for therapeutic, i.e., post infection purposes. But that doesn’t mean we shouldn’t consider it. And if vaccines could provide a method to reset our immune system’s aim, could they do the same for other conditions? Infection from the Epstein-Barr virus may cause multiple sclerosis, according to a study led by Harvard T.H. Chan School of Public Health researchers. Could the presentation of an attenuated version of the virus re-educate these individuals’ immune systems?

Could the re-education of our immune systems also work for something like chronic fatigue syndrome/ME? If a virus caused this condition, could we not trace this back through an interrogation of the viruses that were present prior to their conditions emerging? But wouldn’t this mean the generation of lots of new vaccines? Possibly. But we have new, faster methods of creation, e.g., mRNA. And don’t forget, we also now have a stockpile - winter flu jabs. What if a winter flu vaccine, created prior to someone’s CFD emerging, might provide the reset button for their immune system needs?

One of the most recent discussions on the symptoms of long covid has been sticky blood. There have been several instances where patients with long covid have had their blood analysed using fluorescent microscopy. This technique has revealed that these individuals have micro clumps of blood. It's likely that these clumps might limit the flow of blood and supply of oxygen around the body, perhaps contributing to the feelings of fatigue. Some have received treatment that appears to have helped. I’m guessing its low-molecular-weight heparin of the type used in fertility treatment. What about a mechanical treatment? Perhaps the centrifugal technique used in platelet collection, or a version of dialysis used to treat people with kidney malfunctions.

But back to the present, what triggered to me to take such high amounts of Vitamin D? In the summer, I’d volunteered to be a steward at a festival. It turned out to be one of the hottest weekends on record in the UK. We had eight-hour shifts in which we had to patrol the camp sites. Now, for someone with long covid, this was foolhardy on my part. But to my immense shock, despite walking up to 10 miles a day in temperatures of 30 degrees Celsius in the scorching sun, I had no long covid symptoms. It was baffling. What was it? The heat, the exercise, the fresh air? Maybe it was the sunshine? If it was, then it could be vitamin D - generated through exposure to UV. And the following week, this an article was published by the University of South Australia (t.ly/A8f-) suggesting that low vitamin D could cause chronic inflammation. And after all, wasn’t that what long covid was?

I started increasing my dose, guessing that 36,000 a day would be non-toxic. The tablets I took came in 4,000 IU dosed tablet. I took 3 in the morning, 3 at lunchtime and 3 in the evening. The amount was mostly based on knowing that 1-2 hours of sunshine generated 20 to 40,000 IU. And it’s not like we hear of roofers being taken to A&E with vitamin D poisoning. A pharmacist reassured me, in the middle of the month, that it was the same level given to those with a severe deficiency. Last week I got the test results back for that period of high dosage. I was 1 nmol/L below the level of what is at risk of toxicity (above 220 nmol/L). I’m now back to 24,000 IU per day and will test again.

Might there be a correlation between long covid and sunlight hours? Let’s have a look:

• United Kingdom | 4.7% 1,365 hours
• Australia | 3.9% 4,403 hours
• Canada | 3.7% 2,104 hours
• United States | 3.7% 2,590 hours
• New Zealand | 3.2% 3,864 hours
• South Africa | 2.9% 3,609 hours
• Germany | 2.6% 1,569 hours
• France | 2.6% 1,900 hours
• Brazil | 2.4% 2,488 hours
• Argentina | 2.2% 2,532 hours
• Spain | 2.1% 2,800 hours

It’s certainly not conclusive. But it's certainly something that could be explored further, with someone with greater access to the data and statistical skills. Or we could look at science fiction for inspiration. The recent Star Trek episode, "Ghosts of Illyria", featured a viral outbreak that could make its victims desperate for light. Whatever the answer will be, if there is one, hopefully this experience might help others to find a solution to treating their long covid.

DISCLAIMER: before changing your diet or taking new supplements of any kind, especially high doses, consult your doctor or physician first.