Connor Edwards says his life started to deteriorate after getting Lyme disease from a tick bite while exercising, and further health complications have meant his skull is getting looser and looser
A young man whose life unraveled after being bitten by a tick while mountain biking says his skull is now detaching from his body.
Giving a brutal summary, Connor Edwards, 30, told us: “I am literally bedbound/wheelchair bound with a head that is falling off. It is a pick and mix of what I wake up with but the baseline is all my joints dislocate and my head slides around and it is impossible to live this way… impossible.”
Connor, who is from Cannock, Staffordshire, is pleading for help to raise money for life-saving surgery. And he said if he is unsuccessful, he will consider going to Dignitas in Switzerland to end his suffering for good.
Below, we take you through how one innocent bike ride five years ago changed the course of his life.
Tick bite
Connor described himself as a normal 25-year-old who went out with his pals on the weekend and earned a living as a life insurance salesman.
However, after battling depression, he took some time off work, and started bike riding to lose weight and to improve his mental health.
This was helping him greatly and he mountain biked in Cannock Chase multiple times a week.
But he remembered: “One time I got home and I had an itch on my right bum cheek and I didn’t think anything of it but the next day it was really sore so I checked and I had a tick that was embedded into me.
“I thought nothing of it and I just pulled it out… over the next six to eight months everything hit the fan.”
Symptoms and diagnosis
Connor’s mental health rapidly declined and he started experiencing burning sensations in his hands and feet. He was eventually told he had Ehlers-Danlos syndrome (EDS) which is a group of conditions that affect connective tissue.
However, his symptoms got more severe, including one psychotic episode, and his wrists started to pop out while his knees began giving way.
His spine also started cracking and popping and doctors advised him to go to a physio – but he knew it was more serious than that.
Fatigue and passing blood in his stool were more symptoms. He explained: “It was getting worse and worse and worse and then one day I woke up with a really sore neck. I just did a little stretch and thought nothing of it.
“But the next day when I woke up, I literally couldn’t, and I mean this, I couldn’t even hold my own head up. My head felt like a bowling ball, it was that heavy.
“Overtime, within the year of that happening, my head became that loose that it was sliding around at the top of my neck and all of my other joints were getting rapidly looser and all my other symptoms were getting worse and I lost more and more quality of life until I was completely bedridden.”
Convinced it was more than just EDS, Connor went to a specialist clinic in Germany two years ago, where he learned he was “riddled” with Lyme disease – a bacterial infection spread to humans by infected ticks.
He said this explained the previous psychotic episode where he said he didn’t feel like a human being and his surroundings felt like a dream. “That was obviously the Lyme disease getting to my brain,” he said.
To make matters worse, Connor, as a consequence of his EDS, was also diagnosed with Carnio Cervical Instability (CCI) which involves the junction between the skull and cervical spine being unstable.
As for what life looks like now while battling his various conditions, he said: “Bed, toilet, bed, just on my phone all day in bed. It is so very bleak. Windows closed, curtains closed because I can’t tolerate light. Ear muffs on because I can’t tolerate sound very well on some days, even this conversation is rapidly fatiguing me.”
Last hope
Connor, who said a simple breath can cause excruciating bone shifts within his spine, needs to raise £100,000 for surgery abroad that would ultimately stop his brain stem from being compressed by his skull.
Explaining in his own words, he said: “My head and my neck are that loose where they connect together, and when they are that loose, the brain stem in the middle is getting irritated and bashed into and squished.
“Having that fusion (via surgery), my head wouldn’t be falling off because there would be bars and rods holding my head stuck in the same place.”
Fighting back tears, Connor talked about the consequences of not raising enough money for the cranio-cervical fusion surgery that would stabilise his head and neck.
“If I don’t get surgery, ultimately I could die,” he said. “Lyme disease is attacking my body. It is destroying my body and my immune system and my nervous system.
“Not only that, the Carnio Cervical Instability is progressive, my head is getting looser and looser. I mean, at the end of the day, I am trying to save my own life.
“The NHS don’t treat either of these for me, they don’t treat CCI, they barely know what it is.”
Renowned neurosurgeon Dr Vicenc Gilete, told Connor his case was the “most severe” he had ever encountered. And while the surgery and travel expenses would be £85,000, he also wants £15,000 to go to helping him to control his Lyme disease.
To read about the surgery in more detail, or to make a donation, head over to Connor’s GoFundMe page