Dr. Maigaelle Moulene Long Covid/Post-Viral Syndrome
Resource

MY LONG COVID JOURNEY

 

My Long Covid Journey actually started before Long Covid even existed. I was diagnosed with Ehlers Danlos Syndrome Classical and Type 3, POTS (Postural Orthostatic Tachycardia Syndrome), Histamine Intolerance and possible MCAS (Mast Cell Activation Syndrome) right after the birth of my second child in 2013. Little did I know how related these would be to Long Covid. 

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I caught Long Covid in January 2022 from my nanny who had just returned from Italy and brought back with her a cough, fever, chills and a sore throat from her holiday. Covid did not spare me: my POTS sent my heart rate in overdrive, I had severe abdominal pain, diarrhea and vomiting, I couldn't sleep; it was as if I were being given continuous shots of adrenaline to keep me awake and I had the worst burning in my back. I ended up in the emergency room twice with chest pain and tachycardia. Two weeks after my fever and chills and sore throat left, all the other symptoms stayed. It was torture: my back was on fire, I didn't sleep for days at a time, every time I ate I had stomach pain and was so bloated I literally looked pregnant, and my heart felt like it was going to explode in my chest. 

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I spoke to my GP who started me on Propranolol for my heart rate, sleeping pills for the insomnia and proton pump inhibitors for heartburn and gastritis. The Propanolol helped my POTS, but the sleeping pills didn't do much, and the heartburn medication only helped a little. The insomnia was still severe and the burning back was the worst ongoing symptom. I was so desperate and in so much pain that I started googling and found one case study which was treated with Pregabalin. I begged my GP to start me on Pregabalin and it helped with the insomnia and what was later known to be small fibre neuropathy. I didn't leave my house for days, I was so exhausted from the insomnia and the pain. Two months later, I tried to attend my daughters cross country race and just after 10 minutes of talking, I became breathless and started having abdominal pain again. Any kind of exertion made everything worst: the fatigue, the abdominal pain and the breathlessness. I crashed every time I tried to leave the house.  

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It was a long road. I saw a cardiologist, a chest doctor and had a full body MRI. All my results were normal. Finally, I was sent to a Long Covid specialist who told me I had all the risk factors: female, 34-50 years old, EDS, perimenopausal, with histamine issues. I cried. I finally felt someone understood a little of this black hole of an illness. He told me that patients with Ehlers Danlos had a higher chance of getting Long Covid and that Covid triggered POTS and MCAS. I was bound to get Long Covid, but nobody had known this when the pandemic started.

 

Covid re-triggered my POTS, which was sending my heart rate all over the place. He continued my medication and followed my case. Six months after getting covid, I had agonizing stomach pain while watching my daughter swimming at a national swimming championship. I ended up in hospital for 10 days with appendicitis which eventually ruptured my appendix - it was a nightmare I don't need to get into too much detail right now. The surgeon treated me with intravenous antibiotics instead of surgery, which was a bad mistake.  I know that inflammation is known to be a possible cause of Long Covid and I am convinced that Long Covid triggered my appendicitis even though my surgeon didn't know anything about the link between covid and appendicitis. Only months and years later would studies determine a link. Instead, I was sent to a gastroenterologist who didn't really know anything about Long Covid and just sent me for an endoscopy and colonoscopy, which I never did.

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Since getting covid, I have had a myriad of random symptoms in rotation. Hair loss, hoarse voice, coughs, infection after infection, cellulitis, UTIs, colds, muscle pain, random muscle twitches, headaches, ear ringing, internal tremors and vibrations, thoracic tension like my chest is being squeezed, memory loss, cognitive issues including headaches after using my brain and not being able to follow a sentence; I would forget the beginning by the time I got to the end. I once had a full body, burning, itchy, angry, bumpy skin rash that the emergency doctor said she had never seen before and no cream was going to fix it. The dermatologist was convinced it was a sun allergy. I was started on steroids which made it to away but I can confirm it wasn't a sun allergy; I've been in the sun many times since and I have not had another reaction. I am sure this was a manifestation of my MCAS but no doctor could diagnose this. He tested me for skin allergies and I was positive for house dust mites, random outdated medications and gold. Weird. 

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I tried other treatments which failed like amitryptiline for the neuropathic pain which gave me palpitations and HRT which gave me cramps. I ended up stopping the Pregabalin when I gained so much weight and because I was worried it was a controlled drug and would get hooked. Still, the symptoms didnt go away. Whenever I overexerted myself, I would crash that sometimes lasted 3 weeks in a row. Times when I became so short of breath I could barely speak a full sentence. Times when climbing up the stairs felt like running a marathon. Times when taking a shower took all the energy in me and it was the achievement of the day. Times when I had to lie down in a dark, silent room, when the world was too much too handle. Times when I cried when I felt completely alone in this world with a complete unknown illness with no cure.

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Finally, my Long Covid Consultant started me on a low dose of Duloxetine in 2024 when it was discovered that Long Covid patients had low levels of Serotonin (3). The symptom relief was quickly apparent: the crashes weren't as bad, and the breathlessness wasn't as bad. The symptoms haven't completely gone, but they are better. I still crash, but I don't feel nearly as bad as before when I do. He wanted to increase my dose but already the low dose had sent me into a manic whirlwind when I couldn't stop shopping on Amazon and I ended throwing a summer party for 300 people, which nearly killed me. Big mistake. 

 

On top of all of the medication, I started a lot supplements that I researched and I found through Facebook Long Covid pages. I also started Symprove, a live probiotic, which has helped my stomach bloating and pain. 

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​Last summer, I went to a functional doctor at one of those very expensive, very beautiful celebrity health spa retreats where I tried everything from detoxifying foot baths to hypoxic training to ozone therapy. The blood tests showed lowered immunity with low neutrophils and she found that I was allergic to dairy and intolerant to gluten so started me on a dairy free/gluten free diet. The doctor told me I had a leaky gut and its link to Long Covid and that I needed to heal my gut. She also told me I had MCAS needed to continue a low histamine diet. All I was allowed to eat was coconut yogurt and boiled chicken but by the time I left, I felt like my head was much clearer than it had been in years and my gut finally looked normal and my immunity has improved. 

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Throughout this time, I have read stories from patients desperate to be heard, desperate for others to believe them, desperate for doctors to pay attention, desperate for treatment. This is my answer to all of them: this is real. Whether it is called Long Covid or post viral syndrome or ME/CFS or whatever. It is real and it robs people of their previous life. With awareness and education and research, hopefully these patients will all be treated with kindness and understanding they deserve.