Heading to the city that never sleeps to support a charity that doesn't either.
Lyme Disease has had a huge impact for my family, so I'll let my wife, Elisa and my daughters, Carmen and Gabi give their own accounts.Your support is hugely appreciated.
In the summer of 2019 I was bitten by a deer tick whilst on a walk in a local park. At the time, I visited my GP for medical advice but was told Lyme disease is extremely rare, and not present at all in the area of the UK I was in. I trusted my doctors and thought nothing else of it.
What happened over the course of the following 12 months however, was complete chaos in my body. From joint pain, panic attacks, pins and needles, fevers, rashes, muscle aches, tachycardia, insomnia: the list goes on. Each symptom led to trip after trip to the GP, and even several nights in A&E. At no point did anyone, including me, connect the dots to the tick bite the year before. Each visit, my symptoms were dismissed and attributed to 'anxiety' due to Covid and lockdown. It got to the point where I actually felt like maybe I was crazy.
In a strange twist of fate, one of my sleepless nights resulted in me coming across a news story online about a girl of a similar age to me, who had been suffering for the greater part of a decade with every single one of my symptoms. She too had visited countless doctors and essentially been told time and time again that it was all in her head. The real culprit? A tick bite. After lots of research, she had managed to realise that everything she had been suffering from had unravelled after she found a tick on her leg when she was a young girl. Further investigations led her to understand that NHS testing is simply not up to scratch, with 50% of results being false negatives. It turns out that the best testing facilities for Lyme are in Germany, where it is highly prevalent - so thanks to this girl's story, I was able to find an appropriate laboratory and send off my blood for testing too. Two weeks later, I got my positive results back. Weirdly, in that moment I felt a level of relief. A level of validation for what I had been suffering with for the past year. The issue however was, that the NHS couldn't help me with this, as the treatment they offer for Lyme isn't sufficient for the longterm and chronic level of the bacteria in my body, having been left untreated for over a year.
This is where Lyme Disease UK really turned things around for me. I was able to reach out to them for help and advice. They made me feel heard and like I wasn't alone. I joined their online forum where I met thousands of other people just like me in the UK. A part of me felt very sad that so many of us had been left to suffer and navigate this mess alone. But another great part of me felt solace in knowing that we were an extremely driven community, finding solutions to the problem. Lyme Disease can be a terrifying and debilitating illness for sure, but it doesn't have to be like that forever. There are so many things that can help out there, and Lyme Disease UK offered me so much hope and helped me see there was a light at what had felt like the never-ending tunnel.
Lyme disease is an incredibly pervasive and pernicious illness, affecting almost every organ and system in the body, and often every aspect of someone's life. Its far-reaching effects make the lack of medical understanding of it in the UK both astonishing and appalling.It took me almost a decade of mysterious and debilitating symptoms to get diagnosed - eight long years of medical gaslighting, of being dismissed, derided and openly mocked. The psychiatric symptoms of Lyme disease meant that I often almost believed what they told me, that it was all in my head, or that my symptoms were self-imposed. My lifestyle, my age, my gender, my hormones were all at times also proclaimed to be the root cause.
It wasn't until my sister's impressive self-education that I started to piece together the experiences that had accumulated over the years and finally was able to take a test (privately and overseas) that confirmed my suspicions. And even with this diagnosis, I am still unable to receive even a semblance of treatment or support from the NHS. Instead, I find myself in an entry-level job having to pay for private treatments and try out different methods to manage my symptoms.
That's why charities like Lyme Disease UK are absolutely indispensable. They raise awareness, support diagnosis and treatment, and give people the answers, affirmation and community that can truly revolutionise a life, and rescue someone from a downward spiral onto a path of recovery and hope.
A long time ago, my children's primary school headmistress told me that I had brought them up to stand up for themselves. I never thought it would serve them as well as when my two daughters had to fight for over ten years with every doctor they saw. From hypochondria to anxiety, I even had the unpleasant experience of seeing Gabi being laughed at by a GP in the same practice where, when she went with ticks attached to her skin, the doctor had to Google Lyme as he admitted to knowing absolutely nothing about it.
Carmen went to A&E, where she was told ticks didn't bite humans. One day, by chance, she read an article about Lyme disease and it all made sense. The three of us got tested and even when tests come back positive, in a strange way this was such good news, since now we might not just be offered antidepressants or therapy.For each of us, the journey has been very different. Gabi has been dealing with the symptoms of Lyme for more than 10 years with no diagnosis. Carmen's health faced a rapid decline, within months making her very ill and ultimately leading to thyroid cancer which she survived following a thyroidectomy and radio-iodine treatment. The girls insisted I was tested as I had many symptoms which I continued to ignore and I'm now learning to accept and manage.
Lyme Disease UK work to advance awareness, diagnosis and treatment of Lyme disease in the UK which is vital to avoid late diagnoses which result in chronic Lyme and years of suffering. This is a real disease, these are real people who are suffering and deserve a lot better form their health care providers.
Keep in the loop
My thirty week training officially starts today and I'll be using Strava to post updates to this page. You'll get the opportunity 'subscribe' to email updates to follow how it goes!