Lyme Disease survivor releases album to raise awareness for the illness

A Southwark Lyme Disease survivor has created the album ‘The Lyme Years’ about his personal journey with the illness.

Demetrios Loukas, 49, first started working on the album with Minnesota-based producer Treyvonce Ambers-Moore, 25, in 2015.

The album introduces listeners to the science-based lobby group, ‘The Fight Lyme Now’ campaign, and aims to raise awareness for the bacterial infection which has proved debilitating for Loukas.

Loukas said: “Lyme Disease literally broke me.

“It’s affected so many of my organs and body systems, and has disabled me physically, emotionally, and spiritually; that’s how bad it is.”

Loukas contracted the disease in 2005, when he was bitten by a tick while studying for his PGCE in Primary Education at Oxford Brookes University, but he was not clinically diagnosed until 2012.

He explained that during this time, he suffered with various mental health issues.

He said: “I felt suicidal for many years – I’m not proud of that, but it’s true.

“I knew I really didn’t want to die, but I felt that way and I wasn’t sure why.”

Song creation became cathartic for Loukas and offered a platform for him to share his story and lessons learnt.

He added: “Writing and recording a song about an experience, especially an unpleasant one, definitely has psychological benefits, and warming up my voice and singing has never once failed to lift my mood.”

Collaborator Ambers-Moore described how Loukas’ outlook on the illness was inspiring to him.

He said: “Within ‘The Lyme Years’ project, Demetrios lyrically details loneliness, trauma, and the reality of not knowing if tomorrow is guaranteed.

“Interestingly though, Demetrios has somehow flipped his personal experience with the disease by writing songs of hope such as ‘Cherish’ and ‘I Come Alive,’ which encourage an optimistic approach to life.

“I hope our songs will positively impact people – including those who also suffer from the disease.”

‘The Lyme Years’ contains seven songs, one of which is in fact a Christmas song – ‘Love Is Enough (On Christmas Day).’

Ambers-Moore commented: “The Christmas song was made to remind the world that love brings us all together and that at times, it’s all we really need.

“We hope the song’s message brings listeners happiness and alleviates their distress during these challenging times of Covid-19.”

The song was written years before the arrival of coronavirus, but Loukas said some of the lyrics remind him of the pandemic.

lyme disease survivor's album raises awareness for illness
PANDEMIC PRODUCTION: Treyvonce (left) and Demetrios (right) worked on the album over Zoom during the Coronavirus lockdown

He said: “The lyrics could easily be referring to social distancing and masks, I think.

‘What do you when love someone? What do you do when you can’t hug them? What do you do when you can’t make them see just who you are?’

The other songs on the album include ‘Hand Up,’ which supports the LGBT community, and ‘Open Your Mind’ featuring rapper Ron-E (Ronny Ambers), which is dedicated to Ronny’s older brother Richard who was murdered in a drug robbery in 2016.

Malik Curtis, who features on the specific Lyme Disease awareness song ‘Never Give Up,’ said it was an honour to be part of the album.

He explained: “I would say my contribution was to spread awareness.

“Treyvonce told me about the record and honestly, it wasn’t my usual sound, but it gave me the chance to step out of my comfort zone musically, and more importantly – to help spread the message.

“That is what I am about; spreading information and love through the arts.”

The Fight Lyme Now’ campaign aims to assess the adequacy of clinical diagnosis of Lyme Disease in the UK and improve testing for the illness.

The science-based lobby group arranged a meeting with Public Health England at their Rare and Imported Pathogen Laboratory in 2015, during which it was disclosed that diagnostic blood tests used by the NHS to detect Lyme Disease are not totally reliable.

Despite various campaigns, Loukas said that still nothing has changed for Lyme Disease sufferers in the UK – even five years later.

He explained: “Potentially infected adults and children continue to be denied treatment because the current diagnostic tests used by the NHS, which are at best 50-60% sensitive, fail to detect their infection. 

“People already infected who test negative on the NHS are either misdiagnosed and inappropriately treated or completely dismissed which is unacceptable.”

Dr. Michael Wetzler from Hill Medical Centre, who has treated Loukas since 2013, said: “The approach to chronic Lyme Disease in the UK has left something out and does not address the full range of symptoms suggestive of the disease and its co-infections.”

He added that the accuracy of the UK tests has been questioned and that the set of tests currently performed in Germany and the US may be more accurate.

You can find out more about ‘The Fight Lyme Now’ campaign here.

You can also read about a Lyme Disease survivor who hopes to ski to the South Pole here.

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