COV-19: Is it actually long Covid?

The symptoms of long Covid are very similar to those of several other conditions: ME/CFS (chronic fatigue syndrome), post-viral fatigue (syndrome), fibromyalgia, Epstein Barr virus reactivation, POTS (postural orthostatic tachycardia syndrome) and MCAS (mast cell activation syndrome) in particular. These conditions can also be triggered by an acute viral infection like COV-19.

Compare for example the list of long Covid symptoms with the most common ME/CFS symptoms, which are:

Severe fatigue, post-exertional malaise/exercise intolerance, ‘brain fog’, neurocognitive impairment, muscle weakness/fatigue, sore throat, insomnia/unrefreshing sleep, pain/headaches, sensitivities/intolerances, gastrointestinal issues, poor temperature regulation and immune dysfunction.

If you would like to read more about ME/CFS and fibromyalgia, please see the relevant previous posts in this blog. POTS is more likely to be connected if you have hypermobility/Ehlers Danlos syndrome. In this post I’m going to focus on Mast Cell Activation Syndrome and Epstein Barr virus reactivation.

Mast Cell Activation Syndrome (MCAS)

MCAS is a chronic multi-system disorder with inflammatory and allergic responses. Symptoms are caused by the cytokines and amines that are released by mast cells. Mast cells are part of the immune system. They are activated in infections, hypersensitivity and allergic reactions, releasing histamine and producing inflammation. MCAS is basically when they go wrong and are activated too much or too often and/or in response to triggers that are not usually harmful eg certain foods, stress, exercise, sunlight, smells, temperature changes. 

It is not known what causes it; sometimes it can occur in response to another condition which activates mast cells and is found to co-exist with conditions like ME/CFS, POTS, fibromyalgia, Ehlers Danlos and some autoimmune conditions. Despite causing chronic inflammation and debilitating symptoms, test results are typically normal. It is difficult to test for.

Symptoms

Symptoms vary between individuals but typically there are 7 on average. As with ME/CFS, there is much symptom overlap with long Covid. The most common symptoms are:

  • Histamine intolerance

  • Rapid pulse/Palpitations, Chest pain, Low blood pressure, Fainting

  • Itching, Rashes, Flushing (skin redness), Swelling

  • Wheezing, Shortness of breath, Difficulty breathing, Sore throat

  • Nausea/vomiting, Diarrhoea, Abdominal pain

Acute COV-19 has been found to exacerbate MCAS in patients who already have this condition. It’s possible you may not have known before that you had it, as it is quite common but seldom recognised. Mast cells are activated by the COV-19 virus. The COV-19 virus may also trigger MCAS in sufferers of long Covid due to viral persistence triggering a continued immune/mast cell response. It has been shown that the virus’ spike protein is present in the monocytes of these patients (monocytes are another type of immune cell). The hyperinflammatory ‘cytokine storms’ experienced by COV-19 patients may be caused by an atypical response to COV-19 by dysfunctional mast cells of someone who has MCAS (but may not have known it). Drugs inhibiting mast cells are currently showing early promise in lessening the severity of COV-19. 

27% of long Covid sufferers have some degree of MCAS.

Epstein Barr Virus reactivation

Epstein-Barr Virus (EBV), also known as human herpes virus (HHV) 4, is a member of the herpes virus family and one of the most common human viruses. Also known as ‘the kissing disease’, most of us have caught the virus at some point in our lives.

Symptoms of EBV can include fatigue, fever, sore throat, lack of appetite, swollen glands in the neck, rashes, weakness and sore muscles.

Post-recovery, the virus becomes latent (inactive) in our bodies, suppressed by our immune systems.

COV-19 may trigger EBV reactivation and this has been found in 67% of long Covid sufferers, especially those with weakened immune systems. Reactivation occurs early on – soon after or concurrently with COV-19 infection, including after asymptomatic acute infections ie you can have EBV reactivation without knowing you caught COV-19. It is caused by viral load: we live in symbiosis with literally trillions of viruses within us every day (‘viral burden) and they are kept under control by our immune systems; the addition of COV-19, especially with immune dysfunction, effectively ‘tips over the apple cart’. Hence other latent viruses can also be reactivated, such as cold sores (another member of the herpes family). 

The symptoms being experienced by long Covid sufferers may not be due to the COV-19 virus but instead to EBV reactivation, ie it is not long Covid at all. It is therefore important to find out whether it is COV-19 or Epstein Barr that is causing symptoms by testing the EBV status (active/lytic or inactive/latent). These human herpes family viruses are also highly implicated in ME/CFS.

Effects of hospitalization

Hospitalisation can cause health effects that are similar to the symptoms of long Covid – it can therefore be difficult to know whether the symptoms are being caused by the effects of hospitalization, the long-term effects of the virus, or a combination of both. This includes symptoms such as severe weakness and fatigue, problems with thinking and PTSD (post-traumatic stress disorder). This may then be complicated by other effects related to the pandemic such as the mental health effects from isolation, or the negative economic impact.

Don’t get hung up on a diagnosis

There is a lot of overlap between these different conditions, and much individual variation within them. Never has the naturopathic principle “Treat the whole person, not the disease“ been more relevant. Instead of trying to put a label on it, or labels, focus on finding out what is relevant to you individually. Long Covid is just another label. Find a naturopathic or functional medical practitioner who will investigate what your unique set of imbalances are and give you personalised support.

In my next, and final, post in this series I offer some general advice which I hope you will all find helpful.

Disclaimer: these COV-19 posts were written based on the evidence available at the time of writing. As new information continues to emerge, they may no longer be up to date or correct.

Olivia Smartlong covid, long haul covid, longhauler, covid-19, coronavirus recovery, mecfs, mast cell activation syndrome, epstein barr, fibromyalgia, chronic fatigue syndrome, post viral fatigue, pots, mcas, brain fog, ehlers danlos, hypermobility, cytokine storm, histamine, histamine intolerance, mast cells, herpes virus, viral load, kissing disease, shortness of breath, autoimmunity, rash