Meet Toby – the Lyme disease sufferer releasing a charity single

In this week’s blog we’re delighted to introduce Toby, a singer/songwriter from Cambridge who is releasing a charity single that will benefit Caudwell LymeCo and other UK Lyme charities.

Toby, 25, has suffered with Lyme disease for over 13 years and feels passionate about raising awareness and contributing towards research that will improve diagnosis and treatment, given the struggles he has faced.

We had the pleasure of meeting Toby and his team last month, and we are so grateful that he’s chosen us as one of the charities he would like to support

Here we ask Toby some questions about his journey and his charity single:

We’re so sorry to hear of how you’ve suffered with Lyme. Can you please share your story?

In 2006, at the age of 12, I travelled to Sweden to play in an international football tournament. Whilst there I became very ill, and had to withdraw from the tournament due to having a high fever and being sick. I did recover, but only partially. With my immune system seemingly nonexistent,  I would catch any bug or cold going.

I found it incredibly hard to concentrate and function academically at school, which resulted in me getting into trouble, and eventually my parents decided to home-school me at the age of 14. By then I had developed more symptoms – sore joints, terrible headaches, temperature regulation problems, gut issues, brain-fog, light sensitivity and stretch-mark like scars (which I now know is from the co-infection, Bartonella). In fact, I had a never-ending and ever-growing list of symptoms. I went to the doctors numerous times, but they just thought I had a virus that I couldn’t get rid of.

When I was 16, I hit my lowest point health-wise. Mentally it is so hard having no idea what is wrong with you and feeling as if your body is attacking itself, with no answers as to why, or what to do. As my health kept deteriorating, out of desperation, my mother took me to a clinic in Switzerland when I was 23, to try and get some answers there.

Whilst there, I met someone had recently been diagnosed with Lyme disease. This made me wonder if I could have it too. On returning to the UK, I decided to ask if I could be tested for Lyme. Within a few weeks I had the results back, and I finally had an answer as to why, in all honesty, I felt like I was slowly dying.

I had Lyme disease and 7 co-infections. I also had the Epstein-Barr Virus. After having some treatment at the Breakspear and at clinics in Europe (which I am incredibly lucky to have had, thanks to the support of my parents, other relatives and friends), my health has improved. 

I don’t remember being bitten by a tick and I’m not sure where it happened – whether in Sweden, in the UK or elsewhere.

How did the song come about?

I wrote the song “Never Going to Love You” in August 2019, at a point when I was feeling really down with my ill-health, and Pete Brazier my producer suggested I focus my thoughts on writing about how I was coping with Lyme. I was suffering with a lot of symptoms and pain, and feeling that none of the treatment I was having was really working – feeling generally sorry for myself, kind of thinking, “why me?”.

It started off as a way of vocalising how I felt about my illness, and I felt I could really express myself through the lyrics. I think that anyone who has Lyme disease, or any chronic illness, can relate to the lyrics in the song.

What do the lyrics mean to you?

The first line of the song “Why are you attacking me?” literally just came into my head, and I thought it would be a great opening line to a song.

Since being diagnosed I have had some treatment which has improved my health – I am considerably better now than when I was at my worst, but still feel I have a lot more to do. To begin with I was determined to “beat” Lyme, and be entirely rid of it forever, but I have now accepted that for now I may have to learn to live with it but I won’t let it “beat” me either.

This was, in a way the inspiration for the chorus “I’m never going to love you” – a recognition of having the illness and not liking it, but accepting it.

What made you decide to release this as a charity single?

I decided to use the single to try and help raise money for Lyme research and associated charities, such as Caudwell LymeCo, who we will be working closely with.

I think it is so important to try and raise awareness about Lyme disease, and to improve both diagnosis and treatment. That’s why we have decided to donate 100% of pre-order song sales to Lyme charities, as although Lyme disease is getting more press coverage and awareness is growing, many people still know very little about Lyme and other tick-borne illnesses, and what they can do to protect themselves.

I think anybody who has endured a chronic illness such as Lyme would want to help prevent others from suffering, so I would love to try, in some way, to help Lyme charities doing their great work.

When will the pre-order be available and where can be people purchase it from?

The single will be available for pre-order from late February on Apple iTunes and Amazon as an MP3 download. It can then be downloaded on Friday 1st May (the beginning of Lyme Awareness Month!).

We are donating 100% of our pre-sale profits to help raise money for Lyme research and associated charities and with enough support we hope the single will enter the UK Official Chart Company Top100 . The song will also be available for streaming on the major platforms – Tidal, Spotify, Apple Music, Google Play and most other popular stream sites. Streams are also counted towards a chart placing.

We have been overwhelmed by the support so far and are now aiming to get support of several big television shows on the week of release, and some traditional radio placements to help even more in the fight to raise awareness of Lyme.

You can find out more about Toby and hear a snippet of his song on his Instagram and Facebook pages.

We’ll include the pre-order link on our website once it becomes available.


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