In March 2018, I had just started the job of my dreams and was feeling on top of the world. I had been working in woodlands all over the country for around 6 months, and just landed a brilliant new role which I was ecstatic about, and then I suddenly became catastrophically ill, almost overnight.
It started with pain and numbness in my left leg, which gradually travelled up my whole body and became excruciating chest pain. I developed tachycardia when I laid down and suffered from complete insomnia, and in the space of around 2 weeks, I became totally incapacitated.
I began to lose my memory and become so fatigued and brain-foggy that I couldn’t do a jigsaw for an 8-year old. My whole body hummed like a tuning fork, and at night I would have what felt like mini seizures, where my whole body would convulse, my eyelids would flicker, and it felt like an electric current was zapping through my brain. My muscles twitched uncontrollably and I had spasms and cramps all over. My vision blurred and I would periodically lose my eyesight. I felt as though my body was full of adrenaline for no reason. My stomach was upset, my bladder burned, my skin was covered in rashes and hives, I developed tinnitus and hypersensitivity to sounds, and I felt totally miserable. I developed bruising and swollen lymph nodes all over my chest.
I was visiting the GP weekly, begging them for help, but they only shrugged and said they couldn’t explain it. The only thing they offered to do for me was refer me to mental health services, which I declined. I knew there was something physically very wrong with me, but I just couldn’t get any answers from conventional medicine. I paid privately for a scan of my heart which showed pericarditis, but nothing was done, and I continued to get worse.
I asked them to test for Lyme disease, because I knew I was at risk, but the test came back negative, and sadly I accepted that false result and went away none the wiser. I felt completely abandoned, betrayed by those I had expected to help me, and alone.
My first breakthrough was researching mast cell activation syndrome and understanding that my symptoms were caused by histamine. My immune system had gone haywire and was creating inflammation all over my body.
I asked for a referral to an MCAS specialist and eventually was put on the correct drugs, and that improved my quality of life hugely. However, I was still puzzled by why this had happened to me so suddenly, overnight.
After 2 years, I saw a functional nutritionist, who recognised my neurological symptoms as Bartonella. She did a test, which came back positive and finally I had a missing piece of the jigsaw. I then tested privately for Lyme and other co-infections and was positive for those too.
My mum then remembered the huge bite I had had on my left leg just before I became unwell, and I remembered missing my friend’s 50th birthday party because of ‘flu’ shortly after that.
I found the work of Dr Tania Dempsey, a US specialist in MCAS who estimates that Lyme is the underlying cause in around 50% of her MCAS patients, and the final piece of the jigsaw fell into place.
My research showed me that MCAS is quite a common with Lyme Disease because the toxins released by the bacteria drive the immune system to become overreactive. It made complete sense of the symptoms that I had, and why they had started so suddenly, and finally I could begin to recover.
It is a slow, steady process. I’ve been treating for 18 months and I am not cured yet, but I am continuing to improve gradually.
My experiences with Lyme gave me the opportunity to re-evaluate my life and my career, to consider what is important to me, and where I want to go in the future. Last year I felt well enough to begin studying again, and I qualified to teach mindfulness and now run mindfulness for chronic illness courses.
I am also studying to become a naturopathic nutrition and health coach, as I believe that looking for the root causes of symptoms can help people to improve their own health. My mission is to give other people the support that I was lacking when I became ill, so that they don’t feel so lost and alone, as I once did.
