Sarah had open heart surgery to remove a small non-cancerous tumour
A Colchester hairdresser has been left feeling “let down” by the NHS after she was told her Lyme disease was “all in her mind”.
Sarah Jackson, 29, from Ash Green, has been left house-bound and forced to wear sunglasses indoors after the NHS failed to diagnose her with Lyme disease.
She claims GP’s “laughed at her” and suggested her symptoms could be due to depression.
The 29-year old began to feel unwell when she moved to Australia in 2013.
Now four years later, she has been left house-bound and relies on her family for round the clock care.
Sarah before her diagnosis
“I came back from Australia because I was so unwell. I went to the doctors and GPs for months and months and was told it was probably depression or that maybe it’s all in my head.”
Sarah experienced extreme fatigue, dizziness, confusion and eye problems.
After visiting several different clinics and seeing nine to ten GPs over a year, Sarah “gave up” on the NHS and began her own research.
She explained: “I had no luck with the NHS, I had to do all my research.
“One of the GP’s actually compared me to Stephen Hawkins and said: ‘If he can work why can’t you?’ I just walked out at that point.
“I gave up on the NHS after seeing around nine to ten different GPs over a year.
“When I first got sick, I had to use Google to look at what could be wrong with me.
“One thing that did match up with my symptoms was postural orthostatic tachycardia syndrome (POTS). Syndrome means something has caused it and I looked at what causes that and Lyme disease came up.
“I got tested privately through a company in the USA where I was finally diagnosed with Lyme disease. It was just a completely different experience.
Sarah got tested in America for Lyme disease
“It is not good enough to leave something like Lyme disease get worse and worse. POTS is generally quite easy to spot but they didn’t even pick that up. I just feel very let down by them.”
POTS is a condition in which a change from lying to standing causes an abnormally large increase in heart rate.
As a result, Sarah had open heart surgery, at the age of 28, to remove a small non-cancerous tumour which she believes was caused by the undiagnosed Lyme disease.
Sarah now suffers from eye problems, excruciating head and neck pain and ‘brain fogs’ which cause memory loss.
Lyme disease occurs after a tick bite and leaves a red, circular skin rash around the bite.
A specialist believes Sarah may have contracted the disease when she was a teenager but has laid dormant until she became unwell in Australia.
Sarah continued: “I have never even seen a tick in my life but when I look back before that there was a few symptoms that started to come through.
“You can start to experience flu-like symptons or tiredness but it is very very hard to know.”
It was confirmed Sarah had Lyme disease more than a year after her symptoms emerged in July 2014 after her private diagnosis.
Sarah enjoying her new life in Australia before her diagnosis
Sarah was given oral antibiotics but experts say that if there is delay before treatment begins, there may be less chance of a full recovery.
The qualified hairdresser suffered a seizure in July last year and sought help from Lyme disease specialists in the USA.
She is hoping to raise £40,000 for specialist Intravenous treatment which will “change her life completely”.
Sarah continued: “I have been treating with them for two years and I was doing well until my seizure. Before my seizure, I was starting to drive again and went out with friends, I was starting to live life again. Then I had my seizure and experienced a lot of co-infections. I am very unwell at the moment so I need this treatment in the USA.
“It was amazing, as soon as I walked in there, I felt comfortable. When they assessed me, they knew everything and they just understood me.
“Because there is so much Lyme disease in the USA, there is so many specialists out there.
“It would make it so much easier if I could be treated here in the UK, but even if they did say they would treat me, they do not have the expertise.”
Sarah was a “happy, go-lucky woman” and had planned to pursue a career in hairdressing in Australia.
She said: “I now have to wear sunglasses constantly because my eyes are so sensitive to light. It’s really hard to see and I now have to stay in a dark room.
Sarah and her therapy dog
“I’m housebound so I’m reliant on my family and struggle with everyday life. I see people moan about going to work and I’m thinking I wish I could go to work.
“I’m getting worse daily and stress and emotion makes it so much worse.”
Sarah also recently found out her beloved therapy dog has cancer and has been given just 30 days left to live.
“He’s my therapy dog and we are so close.
“I just want to be able to go to lunch with my friends and do normal things that other 29-year olds do. This treatment really would change my life,” Sarah added.