When Emily Gilmour started to feel really unwell she thought it was because she’d just given birth.
Feeling exhausted most of the time was difficult for the new mum but she put it down to little Oliver not sleeping very well.
But then odd things started to happen following his birth in 2017 and she realised there was something more seriously wrong.
‘I started to worry that I had dementia’
“I used to drink wine before I was pregnant and then after Oliver was born when I did have a glass of wine I was very sick,” the 36-year-old says.
“I had an intolerance to exercise. If I went out for a walk in the morning, come lunchtime it was like I was carrying a dead body around.
“It was so heavy – just lifting my legs became painful.
“For somebody who is a keen hill walker, who would walk for five or six hours, I was unable to walk around the shops.”
Emily, who lives near Blackburn in Aberdeenshire, started to fear she might be suffering from dementia.
She struggled to remember simple things and was showing signs of strange behaviour.
“I’ve been married now for nine years and all of a sudden I started using my maiden name,” she explains. “And I was calling my son by my brother’s name.
“I’d go to the fridge and take out cheese and then, not remembering, I’d find it somewhere else in the house.”
What did the GP say?
Her weight was also a problem because it was “all over the place”.
The mum-of-one would go through days of feeling bloated and then lost two stones in just six weeks.
This was despite barely exercising and eating lots of food.
Clumps of Emily’s hair would fall out leaving her with bald patches on her head.
She struggled with balance, shortness of breath, sweats, migraines and also had facial palsy.
Her toe nails turned black and her feet became so sore and swollen they were often infected and burst.
The concerned mum booked appointments with her GP hoping to get answers so she could get back to her normal self.
“I went to the doctor and said I’ve got all these strange symptoms and I just don’t feel myself,” she says.
“At one point I was dragging my leg; my left side of my body became very weak. And I was told I was stressed, anxious and depressed.”
‘My heart was enlarged and wasn’t functioning as it should’
Frustrated Emily knew there was something more serious going on with her health but nothing could explain the “crazy spikes” in how bad she felt.
“One day I would maybe meet you for a coffee and I would be fine and could string a sentence together,” she says.
“The following day I could be lying on the floor, unable to tell you what my name was.
“It wasn’t like I was in a constant state at any given time.”
Determined to get answers, she booked herself in to see a private healthcare specialist.
Following tests, she eventually discovered that she had an issue with her heart, adrenal fatigue and lesions on her brain.
“I had an enlarged heart which wasn’t functioning quite as it should,” she explains.
Then she discovered why she was so ill…
Further tests then revealed the cause of all her problems – and it happened on the back of a chance meeting with a neighbour in February 2021.
“She’d said ‘I hope you don’t think I’m rude, but we never see you anymore and you look like a shell of your former self’,” Emily recalled.
“I explained that I’d had all of these weird symptoms and every test that I do doesn’t account for what is happening to me.
“She went very pale and invited me to her house where she started talking about Lyme disease.”
Parasite robbed me of my life: ‘Finally I knew what I was fighting’
It turned out Emily’s neighbour had overcome the illness herself after paying for expensive treatment abroad in Germany.
Emily then paid for a lab test and discovered the bacterial infection from the parasite, which is spread to humans by infected ticks, was in her blood.
“Bizarrely, I was elated,” Emily, who works as a customer success manager, says. “I had answers.
“I knew that it was going to be a struggle mentally, physically and financially but I was so happy to finally know what I was fighting.”
Emily reached out to an Irish Lyme disease specialist and started on a long-term treatment of herbs and antibiotics in October 2021.
She started to feel better when it helped with some symptoms and could finally see light at the end of the tunnel.
However, the family were dealt another blow that December.
They discovered Oliver also had Lyme disease…
Young Oliver started to show symptoms and Emily soon found out that the infection from the parasite can be passed from a pregnant mum to her unborn baby.
He developed a smoker’s cough, rashes and strange marks all over his body, hair loss, a rapid heart rate, fevers and vomiting.
Oliver, who is now 5, started treatment in July last year but also showed signs of having ADHD and autism.
Through research, Emily has found that the bacteria can cause these problems if it affects a child’s brain.
But they often disappear once a child is successfully treated.
‘It was horrifying discovering Oliver had a heavy bacterial load’
Emily stopped her own treatment at the end of last year but found out that it had not been successful when her own health rapidly got worse.
She knew she would have to do all that she could as a mother to give herself and her young son every chance of getting better.
She recently made an appointment with the specialist clinic in Germany which had successfully treated her neighbour who’s now been in remission for six years.
“We paid over €3,000 for blood tests and have now received the results,” she said.
“Oliver and I are showing immune suppression caused by long term illness and various bacteria associated with Lyme in our blood streams.
“On this blood test Oliver showed a heavy bacterial load which has been horrifying to witness as a parent.”
What did the family do next?
Emily says she’s reached out to the NHS for help but there is currently no treatment in plan in place for people suffering from chronic Lyme disease.
“We have been told that they cannot help us,” she explains.
She’s now found out that it will cost nearly £100,000 for all the treatments for her and her son at the clinic in Germany.
This would involve courses of antibiotics, detox therapy and alternative treatments such as immunotherapy and ozone therapy, as well as all their accommodation costs.
It’s been a huge blow for Emily and her husband who’ve now spent all their savings – around £40,000 – on treatments so far.
‘It’s robbed us of any kind of normality’
She’s launched a fundraiser in the hope that she can raise some money to help the family pay for their treatment.
It’s been a devastating time, as Emily waited until she was older so she could be financially settled to have Oliver to give him a comfortable life.
“We are literally living a nightmare,” she says. “Our life is very, very different to what it was.
“I have a very good friend network but I’ve kind of shut myself off and have become very isolated.
“I was somebody who was the life and soul of the party – the funny one – with great hair and a new outfit all the time.
“Now when I look in the mirror I hate what I see and we don’t have the means to do anything. We’re spending more than we have coming in.
“We’ve gone from having money in the bank, holidays and a really lovely lifestyle that we’ve worked hard for to struggling to pay for food.
“We’re on our knees with this; it’s robbed us of any kind of normality.”
For more details of Emily and her son’s health condition, or to help contribute to the cost of their treatment abroad, you can visit her fundraiser here.
Conversation