Surfer, 22, suffers from exhaustion, memory problems and spasms ‘like a Parkinson’s patient’ after getting Lyme disease from a tick at a festival SIX YEARS ago
- Joe Blackaby pulled out a tick from his skin at the music festival six years ago
- He woke up feeling groggy but assumed he was hungover
- But his health slowly deteriorated and he received a diagnosis three years ago
- Lyme disease has left him exhausted, struggling to walk or do simple tasks
- He has lost some of his memory and is a ‘shell of his former self’
A keen surfer who was bitten by a tick at Reading Festival has problems with his memory and muscle spasms ‘like a Parkinson’s patient’ after being infected with Lyme disease.
Joe Blackaby, 22, of Caldicot, went to the music festival as a teenager in August 2013 when the bug latched on to his skin.
Unaware a tick needs to carefully be removed without leaving the head or legs embedded, Mr Blackaby ripped it out and thought nothing of it.
The next morning he woke up groggy and assumed he had a hangover. But six years later, his health has not returned.
It took three years to get a diagnosis of Lyme disease, and within that time, it spread throughout Mr Blackaby’s body untreated.
The infection has affected most of his major organs, including his heart and left him with debilitating neurological issues, he said.
He struggles to walk due to fatigue, talk, focus his vision or do simple tasks without feeling exhausted.
Joe Blackaby, 22, of Caldicot, was bitten by a tick at Reading festival has problems with his memory and muscle spasms ‘like a Parkinson’s patient’ after being infected with Lyme disease. He struggles to walk, talk, focus his vision or do simple tasks without feeling exhausted
Mr Blackaby was a keen surfer (pictured) before he went to Reading music festival as a teenager in August 2013 and became ill not long afterwards
Mr Blackaby said: ‘It has taken my life away from me. It’s an awful feeling watching your body deteriorate so rapidly, yet I would do anything to get better from this disease.’
He claimed that so little is known about his condition that doctors in Wales do not know how to treat him.
Avoid Direct Contact with Ticks
- Avoid wooded and brushy areas with high grass and leaf litter
- Walk in the center of trails
Repel Ticks on Skin and Clothing
- Use repellent that contains 20% or more DEET, picaridin, or IR3535 on exposed skin for protection that lasts several hours
- NB Always follow product instructions. Parents should apply this product to their children, avoiding hands, eyes, and mouth
- Use products that contain permethrin on clothing; treat clothing and gear, such as boots, pants, socks and tents with products containing 0.5% permethrin. It remains protective through several washings. Pre-treated clothing is available and may be protective longer
- The Environmental Protection Agency (EPA) has an online tool to help you select the repellent that is best for you and your family
Find and Remove Ticks from Your Body
- Bathe or shower as soon as possible after coming indoors (preferably within two hours) to wash off and more easily find ticks that are crawling on you
- Conduct a full-body tick check using a hand-held or full-length mirror to view all parts of your body upon return from tick-infested areas
- Parents should check their children for ticks under the arms, in and around the ears, inside the belly button, behind the knees, between the legs, around the waist, and especially in their hair
- Examine gear and pets. Ticks can ride into the home on clothing and pets, then attach to a person later, so carefully examine pets, coats, and day packs
- Tumble dry clothes in a dryer on high heat for 10 minutes to kill ticks on dry clothing after you come indoors
- NB If the clothes are damp, additional time may be needed
- If the clothes require washing first, hot water is recommended; cold and medium temperature water will not kill ticks effectively
- If the clothes cannot be washed in hot water, tumble dry on low heat for 90 minutes or high heat for 60 minutes. The clothes should be warm and completely dry
Source: Centers for Disease Control and Prevention
‘My doctor has given up on me getting better, but I have not given up on myself,’ he said.
Lyme disease is a bacterial infection that can be spread to humans by infected ticks – found all over the UK but particularly in grassy and woody areas in southern England and the Scottish Highlands.
The first signs are a distinctive circular rash at the site of the tick bite and flu-like symptoms, such as tiredness, muscle pain, joint pain, headaches, a high temperature.
The disease can typically be treated by several weeks of oral antibiotics.
But if left untreated, the infection can spread to the joints, heart and nervous symptoms and be deadly.
Patients experience paralysis of your facial muscles, memory problems, difficulty concentrating.
In later stages of the disease, inflammation of the eye, spinal cord and brain may develop, leading to loss of vision and increased sensitivity to light.
Mr Blackaby said: ‘Every day is a battle to keep fighting.
‘I have memory issues and I do not remember things from my past. Photos of me feel like someone else’s life. It makes life feel meaningless when you forget everything you have done.
‘My brain will often feel like it is on fire as it gets inflamed. At these times I can’t communicate at all. I just lie in a dark room for weeks waiting for it to pass.
‘The bacteria is eating the cartilage in my body and causing bones in my spine to move out of place, resulting in muscle tears. It’s very painful and upsetting.’
Mr Blackaby said he has lost a considerable amount of weight as his body is no longer able to absorb nutrition from his food properly.
He said: ‘I know the more time that passes the more irreversible damage my body goes through, but currently there is nothing I can do but watch it happen.
‘I feel like a shell of my former self.’
Mr Blackaby believes the only way he can move forward is by travelling to Jemsek Clinic in the US, which specialises in Lyme disease.
He said clinicians will offer him a structured antibiotic protocol in a bid to combat his complex range of symptoms.
He said: ‘The clinic has helped thousands of others overcome this illness and I have faith the same can happen for me.’
A friend of Mr Blackaby set up a GoFundMe page to try and raise the money he needs to get to the US, and within just two months, the total has already reached more then £20,000.
It took three years for Mr Blackaby to get a diagnosis of Lyme disease, and within that time, it spread throughout his body untreated. Pictured with a friend in 2016
Mr Blackaby said his doctor has ‘given up on him’. He is trying to raise money for treatment in the US
Mr Blackaby said: ‘I thought it would get to about £200, maybe £600 after a couple of months.
‘But one day it just got shared so many times. It gives me hope that I will be able to go to America one day and finally get better.’
In response a Welsh Government spokeswoman said: ‘NHS Wales should follow the National Institute for Health and Care Excellence’s (NICE) guidance on Lyme disease, which covers awareness raising for healthcare professionals, clinical guidance on the diagnosis and management of the disease and information for patients.’
According to Public Health Wales, there were 39 confirmed cases in Wales in 2017 – up from just 10 a decade earlier.
It is highly possible that many more people have been infected with this disease, but it has been mistaken for other illnesses.
The symptoms of Lyme are varied and diverse which causes difficulty in trying to reach a diagnosis.
WHAT IS LYME DISEASE?
Lyme disease is caused by a bacteria that is transmitted to humans through the bite of infected black-legged ticks.
The most common symptoms of the disease are fever, headache, fatigue and a skin rash called erythema migrans.
The disease can typically be treated by several weeks of oral antibiotics.
But if left untreated, the infection can spread to the joints, heart and nervous symptoms and be deadly.
WHAT HAPPENS WHEN YOU ARE INFECTED?
During the first three to 30 days of infection, these symptoms may occur:
- Fever
- Chills
- Headache
- Fatigue
- Muscle and joint aches
- Swollen lymph nodes
- Erythema migrans (EM) rash
The rash occurs in approximately 80 per cent of infected people.
It can expand to up to 12 inches (30 cm), eventually clearing and giving off the appearance of a target or a ‘bull’s-eye’.
Later symptoms of Lyme disease include:
- Severe headaches and neck stiffness
- Additional rashes
- Arthritis with joint pain and swelling
- Facial or Bell’s palsy
- Heart palpitations
- Problems with short-term memory
- Nerve pain
Source: CDC
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