I had my first astrazeneca vaccine in March 2021 and started having slight ‘alergic reactions’ to things but didn’t think anything of it. In late June 2021 I went back for my second and then in early July I suddenly had an extreme allergic reaction to a stew I was cooking. All of the ingredients were ones I used regularly. My voice went first and my throat was tight, my heart started racing and I felt dizzy, then I quickly developed chest pain and felt an enormous pressure around my ears. Luckily my husband was working from home so rushed me straight to A&E where it was confirmed I had an anaphylactic reaction but we were all puzzled.
I was given high dose steroids but the next day I reacted to those too and I started to reacting to everything: tap water, all foods, car fumes, make up and shampoo, toothpaste, scented products – especially people’s perfumes, vapes or aftershaves. I couldn’t use any house cleaning products either and reacted to wet paint… everything. I regularly lost my voice and had difficulties breathing, I itched constantly, had hives, skin burning, swelling and bumps inside my lips, burning mouth.
To cut a long story short I quickly discovered I had something called Mast Cell Activation Disorder and what I was experiencing were not allergies but my immune system having a ‘tantrum’! My GP had heard of it but didn’t know what to do and, it turns out, there ARE no doctors in NHS Scotland that we could find to treat it. I have added an entire section of the website to explain it further HERE
I started to develop a whole raft of other symptoms: dry mouth and eyes, I stopped sweating, was unable to regulate my body temperature, bladder or bowels, my skin burned and felt extremely tender, I had phantom random pains and ‘bee stings’, I would sometimes experience acute pain in my arms followed by temporary paralysis then weeks of muscle weakness. I had internal tremors, jerking, dizziness, air hunger, insomnia, and felt sometimes totally wired inside with zapping and buzzing, yet on the outside I literally could not keep my eyes open. Before long I had difficulties walking and my balance and coordination went (this would come and go) and sometimes my auditory processing completely went too so I couldn’t make sense of anything anyone said. The brain fog was horrendous so I was barely functioning at all. I would develop unexplained bruising, had noise and light sensitivity, nausea and alternating constipation and diarrhea and stomach pain. The muscle and joint pain was crippling at times (I now have arthritis) and sometimes my arms and legs would just turn to ‘rubber’. If I was tired the side of my face would droop too. The NHS could not help and would not acknowledge my reaction to the vaccine.
I paid to see a private doctor in the end who follows a protocol called the FLCCC. He diagnosed me with MCAS, dysautonomia, brain inflammation and potentially POTS (by this point the POTS symptoms had improved because of the high levels of antihistamines and a mast cell stabiliser my GP had prescribed) and there were also question marks over small fibre neuropathy. I now have my life back to 50-60% but symptoms still fluctuate. There are treatments I need to try because my mitochondrial function is poor – I can feel like I have lead weights tied to my feet and arms, however these all cost large sums of money.
Meanwhile I will keep fighting for recognition for the vaccine injured and for adequate treatments. I will also keep pushing for training for doctors about MCAS!! I realise now that I had a history of underlying MCAS that would occasionally manifest in different ways but everything was always undiagnosed…. It is a condition that people commonly develop as a reaction to long covid or the vaccines.