Unknown to Emma, a tick had bitten her and unleashed a horrific bacterial infection into her blood stream and – three years later – it’s now in her brain.
With doctors unable to give an accurate diagnosis for three years, she has lived through a host of debilitating and terrifying symptoms which occurred with varying degrees of intensity and without any discernible pattern.
Emma has resigned herself to never being fully cured, although she hopes a diagnosis now means she will received treatment to make her symptoms more bearable.
Emma said: “I became suddenly unwell a few weeks after we were camping in the Highlands in Scotland in 2016. I’d been camping with my partner Ryan. We had a great getaway but little did we know how much I’d have to pay for this small pleasure.
“One day when I went to stand up and my legs gave way and I fell to the floor. I had no power in my legs and although it came back gradually, I was left with numbness, pins and needles and weakness in my left leg.
“I think back to that weekend in the Highlands and remember it being so happy and carefree but it has ruined my health and my life.
“I underwent many tests including brain and spinal MRI, blood tests and neurological examinations.
“I was discharged after a week and advised no one honestly knew what was wrong with me I’d have to visit neurology as an outpatient.
“Then my left I became unable to use my left arm, it wasn’t safe for me to be on my own. I’d burn myself and wouldn’t feel the burn on my left arm until it was too late. I couldn’t get in and out of the bath or even make myself tea.“I was tested for all sorts including MS and my symptoms continued to get worse.
“Every month I developed a new symptom or pain and had many tests, non invasive and invasive including numerous MRIs, nerve conduction studies and a lumbar puncture.
“I was diagnosed with Functional Neurological Disorder, migraines, trapped nerves, fibromyalgia, costochondritis, trochanteric bursitis which is inflamation of rib case and hip joints.”
Bewildered by the mystery illness, progress only came when Emma’s great aunt mentioned the possibility of Lyme disease.
Research revealed her symptoms could be attributed to Lyme disease and extensive tests by private specialist proved her aunt right.
Emma said: “My mum researched the best lab to get the Lyme disease test done and it was completed in Germany and one week later the results were in.
“They showed I have chronic Lyme Disease or Lyme Neuroborreliosis which means this bacteria has hosted itself in my brain. Plus I have co-infections and a very suppressed immune system.
“So after three years of suffering I now had an answer.
“I have since followed every possible route to get the treatment I need on the NHS but due to a lack of recognition and resources in Northern Ireland the available options have provided no answers yet.
“The main priority for my family and myself is for me to get well again as three years of my life has been lost to unexplained illness and misdiagnoses.
“So we have no choice but to go private once again but with my family having exhausted their means of paying for private appointments, I have to ask for help.
“I’ve been unable to work for two years now due to this horrific disease. I really want this treatment so I can get better, get back to working and living the normal life of a 29-year-old.
“I’ve been ill since I was 26 and I feel I have lost out on so much, this illness has taken away a few years of my life and now I know what is causing the illness, I want to treat it and get better.
“It’s frightening because if Chronic Lyme disease is left untreated it can lead to death. At the moment I’ve had all of the disease symptoms apart from heart problems, so I want to get treated as soon as possible.
“Now we have found a private specialist and by following his treatment plans, his patients report getting back to nearly full-health which is amazing.
“ These appointments are expensive and he treats using both western medicine and alternative medicine. So it will be a long-term treatment plan which includes being on medication for up to two years.”
Now the 29-year-old is hoping a massive and long term dose of antibiotics will help get her life back on track.
She explained: “There are days when the most I can do is lay on the settee and cuddle my dog. I am in pain all the time, I’m exhausted. My memory is terrible, my concentration is very poor and I feel decrepid. I have developed issues with my full left side of my body and have constant weakness in my left arm, leg and my neck.
“I just want to get my life back. I used to be so busy and happy and full of life and fun.
“I have my first appointment with the specialist in February which cannot come quick enough. It will be a long process but there is light at the end of the tunnel for once in the past few years.”
Emma had to quit her job and uproot her life to move to be closer to family.
She was forced to give up her work and freedom – relying on boyfriend Ryan to become her carer.
She said: “Ryan has stuck with me but our lives are completely changed. I’m not the person I used to be, Ryan had to give up his work in insurance and look after me and he took a part time job in KFC and he needs it to get a break from caring for me all day.
“I cannot turn the clock back and I’m determined to get as well as I can but I need help.”
It means undergoing heavy-duty, long-term antibiotics to try to bring the bacteria in her brain under control, which could cost thousands of pounds.
Emma said: “I can’t believe I’m in this position asking for donations to help me get my life back, I want to go back to being the person I used to be – or as close as possible.”
If you would like to help Emma achieve her treatment goal, you can click here.
The 88 reported symptoms of Lyme disease
- Hair loss
- Chronic fatigue
- Headache, mild, severe or migraine
- Pressure in head
- Twitching of facial or other muscles
- Facial paralysis
- Tingling of nose, tip of tongue, cheek or facial flushing
- Stiff or painful neck
- Jaw pain or stiffness
- Dental problems
- Sore throat
- Runny nose
- Double or blurry vision
- Increased floating spots
- Pain in or swelling around eyes
- Oversensitivity to light
- Flashing lights/peripheral waves/phantom images in corner of eyes
- Decreased hearing
- Buzzing in ears
- Over sensitivity to sounds
- Ringing in one or both ears
- Irritable bladder
- Interstitial cystitis
- Upset stomach
- Acid reflux
- Bone pain
- Joint pain/swelling,
- Carpal tunnel syndrome
- Stiffness of joints, back, neck
- Muscle pain or cramps,
- Shortness of breath, can’t get full/satisfying breath, cough
- Chest pain or rib soreness
- Night sweats
- Unexplained chills
- Heart palpitations
- Burning or stabbing sensations in the body
- Fatigue, Chronic Fatigue Syndrome,
- Weakness, peripheral neuropathy
- Partial paralysis
- Numbness in body, tingling, pinpricks
- Poor balance, dizziness, difficulty walking
- Motion sickness
- Mood swings
- Unusual depression
- Disorientation – getting or feeling lost
- Feeling as if you are losing your mind
- Over-emotional reactions
- Difficulty falling or staying asleep
- Sleep apnea
- Panic attacks
- Memory loss
- Difficulty with concentration
- Speech difficulty – slurred, slow or stammering speech
- Loss of sex drive
- Menstrual pain, irregularity
- Breast pain, discharge
- Testicular or pelvic pain
- Phantom smells
- Unexplained weight gain or loss
- Extreme fatigue
- Swollen glands/lymph nodes
- Unexplained fevers
- Continual infections – sinus, kidney, eye
- Migrating pain
- Flu-like illness
- Low body temperature
- Allergies/chemical sensitivities
- Increased effect from alcohol
- Depression and anxiety
- Mobility issues
- Brain fog
- Chronic sore throat
- Unregulated body temperature
- Low B12, low vitamin D, low folic acid