“LYME disease is known as the great imitator,” Sarah Jackson explains, while reading from a fact sheet on a UK patient support website.

“Symptoms are non-specific and can mimic so many other conditions.

“Lyme disease can look like chronic fatigue syndrome, fibromyalgia, anxiety, depression, Alzheimer’s, Parkinson’s and motor neurone disease.

“When it comes to Lyme disease, the chance of misdiagnosis is high.”

Nobody knows this more than Sarah, 29, whose diagnosis came about in 2014 via a US testing centre after first being told by a private cardiologist it was Postural Orthostatic Tachycardia Syndrome (POTS) throwing her heart rate out of rhythm.

The year before she was a care-free hairdresser in Australia but illness, likely to have been caused from the tick-borne infection, forced her back to the UK.

But she began to feel sick as early as 2004.

Since then she has contracted several co-infections including babesia and bartonella, had a benign tumour removed, which she believes was caused by Lyme and bartonella, and suffered brain damage from a severe seizure.

Unable to leave home she is plagued by aches and pains, memory problems and brain fog, extreme lethargy and a host of other debilitating ailments.

Until last month when she visited her US specialist alongside her mum, who is also her carer, they had no idea Julie, 53, also has Lyme.

She said: “Within herself my mum knew because she’s had many of the same symptoms I have since birth, or at least a very young age.

“But she’s been very lucky actually other than a seizure she had in about 2003.

“However as she’s getting older, her pain, fatigue and forgetfulness is gradually getting worse.

“Although it’s good to have the diagnosis, she still has the same health problems as me which NHS doctors won’t help with.

“It’s quite likely now that Lyme disease was congenital.”


The hairdresser before her health took a turn for the worse

Visiting specialists last month also threw another curve ball, resulting in Sarah having to double her crowd funding campaign target to £80,000.

Doctors told her she will need more intensive IV therapy than originally thought.

Once treatment starts, Sarah, of Eight Ash Green, will be unable to leave the US which has upped the overall funds needed.

“I was hoping they wouldn’t say this because it’s so much money and so much more stress on my dad, who already works seven days a week,” she said.

“It wasn’t what I wanted to hear but it would be life-saving treatment so when I hear those words, I have to go for it.

“I’m a lot worse than what we first thought but the doctors won’t know to what extent until they begin treating me.

“Looking at how bad I’ve become in such a short space of time, it’s more than likely it’s going to become very hard to treat.

“I’ve started more oral antibiotics and because the doctors have upped my neurological medication they want to make sure I don’t have any seizures while I’m on these first before moving forward.”

Asking the public for donations was a very difficult decision for Sarah and her parents.

When the campaign was first publicised it resulted in a surge of media attention which sadly did not translate to more money.

So far £5,000 has come in but the donations have since slowed right down.

She said: “My illness is invisible. I don’t see my friends anymore because I’m bedbound. It’s really difficult.

“But I know I’m with the best specialists and they’ve brought people back from being so unwell so I guess that’s what keeps me going.

“I focus on recovery and go from there.”

To read Sarah’s full story and to add to her fundraising, click here.