A Northolt mother unable to work or care for her son says the illness which is blighting her life is so painful she would cut off her legs with a chainsaw if she had the chance.
Samantha Frost is convinced she is suffering from Lyme disease but she has struggled to get doctors to agree this is the cause of the agonising pain she is enduring every day.
The 43-year-old took her son paintballing in February 2017 and was bitten by a tick.
She is adamant this has led to the disease which has left her a shadow of her former self.
Samantha has now made it her mission to raise awareness of the illness and wants to fund private treatment at a clinic in Frankfurt.
She said: "The pain in my legs is so bad that if I had a chainsaw I would cut them off, it feels like being electrocuted and some days I can't feel my feet.
"When I'm asleep is the only time I don't feel the pain but it's no life, that's just existing, not living.
"I've become so unwell that my little one has to stay with family because I'm housebound while waiting for the council to get me into ground-floor accommodation."
Despite reporting to doctors that she had been bitten and displaying a "tell-tale bullseye rash", Samantha has had her symptoms attributed to ringworm, a throat infection, gastroenteritis and chronic fatigue syndrome.
A DNA test from America "confirmed" her belief that she is suffering from Lyme disease but the NHS website says that it does not accept diagnoses from websites as they "may not be supported by scientific evidence".
Samantha claims that Lyme disease sufferers are often misdiagnosed due to the perception that the disease is rarer than it is.
A "lack of Lyme-literacy" among UK doctors is a common complaint of awareness campaigners, including former Phones 4 U billionaire John Caudwell, who pledged £1 million of his own money to fund research if the NHS would match the investment.
Samantha believes that greater public awareness of the illness could have prevented her contracting the disease entirely.
Having never heard of ticks before, she failed to notice she had been bitten until two days later, when she undressed after a day at work and noticed "blood everywhere" and the remains of an insect, which she originally mistook for a spider.
By May of last year she "felt ill all the time" and had lost the job she had held for six years as head office manager for a local group of hair and beauty salons. At the end of July last year, she collapsed and was rushed to Hillingdon Hospital.
Over a year later and still housebound, she feels that raising £30,000 to attend the Infusio clinic in Frankfurt is her only hope.
It offers IV infusion and stem cell treatments and comes recommended by advocates and former sufferers.
She said: "I'm scared that I'm going to not wake up one morning, I have seen a lot of people die from this disease.
"The fundraising has got a bit of a way to go but I have received money already from people who are really close friends to me.
"I have met some of the nicest people you could ever meet through having this illness, strangers giving me money because they know how awful it is.
"Now, I just want my life back. This illness has robbed me of my looks, my friends, everything. I am a shadow of my former self."
Samantha's GoFundMe page can be found here .