It’s been a while since I last posted. Unfortunately not because I’ve been feeling super duper all the time.
This past 6 months or so I have been on the scariest rollercoaster yet. I’m going to try to explain it and I’m so interested in hearing from you all what you think, regardless of whether or not you’ve had Covid.
I got I’ll with Covid just before Christmas last year (2021) and it was the scariest thing I’ve ever experienced. I didn’t have fever (which I’m told is not great, as the body fights infection more effectively with fever), and I had the worst sensory overload, motion intolerance, fatigue, nausea, insomnia and gastrointestinal issues. At one point I was crawling to the bathroom. Amazingly it got a lot better within 3 weeks and I went back to normal (well, you know, my version of normal). I still didn’t feel good but managed. Then about 2 weeks later, bam, all the symptoms flooded back and never quite left. Everyone around me had a pretty easy time with their Covid experience.
I was bedbound for 6 weeks and barely functional for months. I had my familiar MAV symptoms, but much intensified histamine response type symptoms, horrid fatigue which ticks all CFS boxes, and the worst and scariest for my: a new type of anxiety. I basically felt like there was something literally wrong with my brain, a type of fear that sent me into uncontrollable panic and fear. I got a lot of help from my functional medicine contacts, including an endocrinologist who thinks I have MCAS and diagnosed long Covid.
I’ve been down many rabbit holes since in terms of research around all of this. My co-morbidities are endometriosis, hypothyroid, oestrogen dominance, recurrent pregnancy loss, I suspect CFS. My periods have been completely erratic since the start of the pandemic too and more so since I got Covid.
Now my fatigue is better, I still have my old MAV symptoms and the episodes of scary panic still happen every few days. I am almost back to normal activity.
Covid causes systemic inflammation and hits hardest where you are most vulnerable (in my case the brain via dizziness and anxiety) - so the intense panic is literally brain inflammation?
my hormones were already hanging in the most delicate balance and Covid firmly tipped the scales. I have read some theories about oestrogen dominance as a risk factor for both vertigo and long covid
my immune system was already in overdrive due to mild CFS, which I didn’t realise, again increasing likelihood of a bad acute illness and long covid
MCAS might account for a lot of long covid, I took cetirizine and famotidine for several months and was reacting to anything and everything (mainly visible in facial flushing). This is talked about by Dr Tina Peers
Long Covid IS CFS/ME! This according to Dr Sarah Myhill
What I find intriguing is that I appear to be the only one on this forum to be suffering from long Covid! Or am I wrong? If I’m right, then why is that? I definitely have/ have had all the classic MAV symptoms.
And how does MAV fit into long Covid?
Really looking forward to hearing any thoughts