My name is Lauren and I’ve got diagnosed with Long Covid around two and a half years ago. This is the story about how I got my Long Covid diagnosis.
Before Covid
Before I had Long Covid I was in good health. I worked in middle management in a corporate job. I was a keen trail runner and yogi. My hobbies also included going on international holidays. I was having some ongoing health niggles whereby I had consistently low iron and B12 levels. This resulted in me regularly taking iron supplements and receiving some B12 injections.
Catching Covid for the first time
In mid-2022 my iron levels were still not improved by supplementation and I was newly back from an overseas trip. I received an iron infusion with the promise that my fatigue would improve within about a week. By the end of the same week, I came down with a viral infection. I later learned this was probably Covid. It was my suspicion that I caught this infection at work. It had been just over two weeks since I returned from overseas.
I was on a night out with friends when I started to get a runny nose and a sore throat. I usually have hay fever symptoms so initially I thought nothing of these symptoms. By the next day my symptoms had persisted so I knew I was ill. I took the wee off work and my viral infection felt worse than previous cold and flus. I didn’t have a cough so it didn’t occur to me that I had Covid.
The Rapid Antigen Test (RAT) I took was negative but we now know that is not determinative. If you suspect Covid then take RATs on multiple days while your infection persists until you receive a definitive result.
I had the symptoms of a bad flu including fatigue, sore throat, runny nose and bad headaches. Lying down and resting was my only option. I obtained a medical certificate from my doctor to excuse me from work.
After a week I was feeling a bit better, albeit still fatigued, so I returned to working from home. On the next weekend, two weeks after my initial infection I attended a social event with friends. By the end of the evening, I was feeling a bit fluey; as in fatigued. I also had a bit of brain fog where I felt much more drunk than I should have for the amount I had drunk. The next day I was ill and felt like I had come down with another flu.
Getting diagnosed with Long Covid
A week later, now three weeks after my initial infection, I was still feeling fatigued which I knew was not right. I would have expected the iron infusion to have kicked in by now and any viral infection to have passed. I saw my doctor who ordered some routine blood tests. When the blood tests came back a few days later my doctor diagnosed me with Long Covid. My bloods were all normal except the high ferritin (iron) level which was to be expected after having an infusion. My doctor’s only instruction to me was to “rest”.
Long Covid is persistent symptoms after a Covid infection that lasts for at least three months. I was actually too early in my journey to meet the strict criteria of Long Covid but the diagnosis would turn out to be accurate.
“Long COVID is defined as a chronic condition that occurs after SARS-CoV-2 infection and is present for at least 3 months.”
I “rested” by ceasing most exercise which was in hindsight inadequate to manage my symptoms. My fatigue and brain fog persisted for several months. I kept working and my condition was classified as “mild”. I didn’t want to seek out further medical care as I didn’t believe there were any other treatments available to me.
Seeking help
After being ill for over six months with no improvement I was frustrated and wanted further assistance. I arranged for a referral to a specialist Long Covid clinic in Australia called Clinic Nineteen.
After a few months wait I was able to see a doctor at Clinic Nineteen. They confirmed my diagnosis of Long Covid and were also able to diagnose me with Postural Orthostatic Tachycardia Syndrome (POTS). To diagnose the POTS, they had me do the NASA Lean Test which was invented by NASA. This involved lying down and taking my blood pressure and pulse. Then I stood up and took my blood pressure and pulse every couple of minutes for 10 minutes. If your heart rate increases by more than 30 beats over the time period you are standing then that is usually indicative of POTS.
“Postural orthostatic tachycardia syndrome (POTS) is a condition that causes your heart to beat faster than normal when you transition from sitting or lying down to standing up.”
Further answers
That was not the end of my journey. I soon after became predominantly bed bound and my Long Covid progressed to severe.
After several months I decided to see an integrative doctor on the recommendation of another Long Covid patient. This new General Practitioner (primary care physician) confirmed my diagnosis of Long Covid. They also diagnosed me with Myalgic Encephalomyelitis (ME/CFS), Mast Cell Activation Syndrome (MCAS) and unspecified gut problems. I was very grateful to have several diagnoses so that I could work on getting better.
“Mast cell activation syndrome (MCAS) is when you have unexplained episodes of severe symptoms like swelling, diarrhea, vomiting, flushing and itching. Unlike allergies, which happen when you eat a certain food or touch something you react to, MCAS episodes happen without a clear trigger.”
“ME/CFS is a biological illness that affects many body parts. It causes severe fatigue not improved by rest, problems thinking and sleeping, dizziness, pain, and many other symptoms.”
Co-morbidities prevalence
I am not alone in having multiple co-morbidities with Long Covid. According to a paper from the Journal of Infection around half of those with Long Covid have ME/CFS. A paper in the Canadian Journal of Cardiology found 73% of Long Covid patients met the criteria for POTS or other cardiovascular autonomic abnormalities. A paper in the International Journal of Infectious Diseases found Long Covid patients frequently had MCAS. I’ve written about how Long Covid is common in the US and globally.
Going forward with treatment
Experienced doctors will say the trick to treating Long Covid and ME/CFS is to address the co-morbidities. I have found this key to treating my condition. Even after trying numerous treatments, I am still severe. The prognosis could be rosier. I hope you will stay with me as I continue in this journey. Here’s to living well with Long Covid and hopefully finding some improvement.
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