For the last three years, Covid long haulers have had to become their own advocates and researchers as they lobby for recognition, funding and proper healthcare. Their knowledge has been hard-won against a backdrop of sickness. They’ve pushed through symptoms that ravaged their previously able-bodies and become the experts of their own disease. 

That is why we decided that all the symptoms on this website should be written by patients, for patients.  As our co-founder Jenene Crossan says “They poured their hearts, their souls and their deep determination to find just enough energy to put their experiences down for others to benefit from”. 

Although we do not intend to give medical advice, the articles have been fact-checked by a wonderful doctor who is suffering from Long Covid too. 

About the author

When I contracted a relatively ‘mild’ version of Covid-19 in mid-2022, in my mid-20s, I assumed my recovery would just involve sleeping away a rather uncomfortable week or two. But as I kept experiencing ongoing symptoms, up until today, I realised how wrong that assumption was.

I developed Mast Cell Activation Syndrome (MCAS), a puzzling and irritating illness with multiple symptoms. Recovery does not follow a linear path, either.

– Male, NZ European, Pōneke/Wellington

<em>Mutiny of the Mast Cells by Tracey Thorp<em>

A brief explanation of Mast Cell Activation Syndrome

Mast cells are a type of white blood cell that live in the human body’s connective tissues. In particular, they sit under the skin, near blood vessels and lymph vessels, in nerves, and the lungs and intestines. Mast cells play a crucial role in many of the body’s immune responses, especially to certain parasites and bacteria. The cells release chemicals (histamine, cytokines, heparin and growth factors) in increased quantities when someone experiences an allergic reaction or other immunological response.

Medical professionals don’t yet fully understand exactly how Kowheori Roa | Long Covid causes mast cell activation. But they believe the persistent inflammation Covid-19 causes has an influence. A physician described this phenomenon: “Once the mast cell response is turned up, it doesn’t wind down just because the infection is gone.”

MCAS can cause many different symptoms that may be mild, but can also be severe and significantly affect daily life. Examples include skin disturbances (such as hives), respiratory and cardiovascular complications, gastrointestinal issues, and neurological symptoms such as brain fog.

These symptoms may occur suddenly or a specific thing may trigger them, eg. stress, physical activity, foods or environmental factors. The severity of an individual’s symptoms is influenced by numerous factors such as age, sex, genetics and underlying medical conditions.

As there’s currently no cure for MCAS, medical interventions focus on lessening patients’ symptoms. The first medications physicians prescribe are usually H1 and H2 antihistamines, mast cell stabilisers, leukotriene inhibitors and corticosteroids such as prednisone. 

Beyond medication use, MCAS sufferers must diligently take a range of steps to manage their symptoms effectively. Avoiding known triggers, such as high-histamine foods or environmental factors, is vital. So is actively practising self-care to reduce stress, improve moe | sleep and promote mental wellbeing.

In my experience

Because MCAS is clinically complex, various specialists provided different opinions about the causes of my symptoms. Some insisted my symptoms must be psychosomatic (caused by psychological reasons) and could not result from a Covid-19 infection, which was frustrating and stressful. It became clear that certain professionals I had trusted were unwilling to listen with a genuinely open mind and compassionate ear. I needed to deal with someone who would work with me respectfully and patiently.

First, I began taking detailed daily notes of my symptoms. This included specific triggers, the frequency and duration of symptoms, and what times of the day seemed worse than others. After compiling a comprehensive record of my issues over several weeks, I found an immunologist to take over my care. These notes, along with my positive response to a mast cell-stabiliser medication, helped the immunologist see that MCAS was the most likely diagnosis.

It can be a challenge to document daily symptoms when you feel unwell, but this task is empowering. It’ something I would recommend to all Long Covid patients, particularly those who suspect they may have MCAS. A clear record of what you have gone through demonstrates your situation’s clinical reality, and imposes an implicit duty on the specialist to investigate further. Documenting your experiences this way means people can’t dismiss your complaints with a quick, simplistic explanation.

What I have tried

My treatment plan involved learning more about my triggers and medication effectiveness, and adapting a strong work-sleep routine. Once I started my treatment plan for MCAS, I did see minor improvements. However, this journey continues to challenge me every day. It involves a lot of trial and error, especially with the use of different medications and adopting a low-histamine diet.

Taking medications and implementing management strategies have helped me overall, but I still regularly contend with unpredictable symptom flare-ups. This can be very challenging to manage, emotionally and physically.

There’s great āwhina | help and comfort in being part of an online tautoko | support network of other MCAS sufferers. In fact, it’s been invaluable. I’ve learned an immense amount about the condition, the determination required to manage this, and where to seek specialist opinions. Finding out about different options for medications was vital – especially the medications I need to have made up from a compound pharmacy, because I react to some substances in commercially produced products.

What others have tried

I’ve spoken to many other post-Covid MCAS sufferers, who are confused and in pain. They have no hope that they can convince their medical professionals to take their symptoms seriously.

MCAS patient Alyssa highlights the importance of getting to know the triggers you must avoid to best manage your condition. Her story of life with MCAS explains what she has learned. “Stress is a huge trigger for me, along with fragrances and cleaning products, so I try to keep stress to a minimum, and I’ve even completely changed the cleaning products I use. Other triggers for me include high-histamine foods, gluten, grains and nuts of all kinds, beans, processed foods, and damp weather.”

Take time to try different approaches until you establish an effective symptom management strategy. Then the power MCAS holds over you will lessen. MCAS sufferer Lucy asserts, “Through trial and error, I have figured out what works for me. Although I am not symptom-free, they no longer control my life.”

How others can help

Some people find it challenging to empathise with an invisible condition that is often very unpredictable and complex. It helps tremendously if whānau, friends and workmates accept our word about what we’re experiencing, and accommodate our needs. If in doubt, just ask how you can help.

Key terms

  • Mast cells are a type of white blood cell located all over your body. People have the highest numbers of mast cells where the body meets the environment: the skin, lungs and intestinal tract.
  • An H1 antihistamine is a medication that helps to reduce the effects of histamine on H1 receptors in the body. Histamine is a chemical the immune system produces in response to an allergen or other trigger. It can cause symptoms such as itching, sneezing, and a runny nose. H1 antihistamines are often used to treat allergies, such as hay fever, and other conditions where histamine causes symptoms.
  • An H2 antihistamine is a type of medication that blocks the action of histamine on H2 receptors in the body. Histamine is a chemical that cells release in response to an allergen or injury, and can cause inflammation, swelling, itching and other symptoms. H2 receptors are found mainly in the stomach and help regulate acid production. By blocking the action of histamine on H2 receptors, H2 antihistamines can reduce the amount of acid the stomach produces. This can help treat conditions such as heartburn and acid reflux.
  • A mast cell stabiliser helps prevent mast cells in the body from becoming activated, releasing histamine and other chemicals to cause inflammation and other symptoms in the body. This medication can help reduce the effects of conditions such as asthma, allergies and Mast Cell Activation Syndrome.
  • A leukotriene inhibitor helps reduce inflammation and swelling in the airways by blocking the action of leukotrienes, which are chemicals produced by the immune system. The medication is commonly used to treat asthma and other respiratory conditions.

How is MCAS diagnosed?

MCAS can be challenging to diagnose because symptoms can vary among individuals. Issues can also resemble those of other medical conditions, such as autoimmune diseases, allergies and gastrointestinal disorders.

In addition, there are no specific laboratory tests to diagnose MCAS. Doctors must rely on a combination of clinical symptoms, lab tests and treatment response to make a diagnosis.

Despite this, if you’re experiencing symptoms similar to this condition since contracting Long Covid, it’s crucial to seek advice from a physician who has expertise in MCAS. A thorough evaluation and diagnostic workup can help identify the underlying cause of your symptoms. Then you can determine the most appropriate treatment plan, and begin making progress.

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Content shared on this website is for informational purposes only. It should not be taken as a substitute for professional medical advice. Always seek the advice of a qualified healthcare professional regarding a medical condition, diagnosis or possible treatments. Long Covid Support Aotearoa is not liable for risks associated with using or acting upon the information provided on this website.