Life from my Wheelchair

Tick Bite Prevention Week

This week is Tick Bite Awareness/Prevention week. According to Public Health England, 3,000 people contract Lyme disease each year, after being bitten by a tick. Early treatment is vital and can help to prevent secondary complications. Having a bull’s eye rash on the skin is a clear indicator for having been bitten by a tick. This happened to my good friend Dave, here is his story. 

Dave contracted Lyme Disease 30 years ago, when he was in his 20s. The cause, a bite from a tick when he visited the New Forest. Dave quickly became unwell with a high fever. At first he thought he had caught flu, but his temperature continued to rise and his partner took him to A&E. Fortunately a consultant there had a knowledge of tropical and overseas tick-borne diseases. He recognised Dave’s bullseye rash and temperature of 43°C with severe flu-like symptoms, as a tick bite. Dave was given several very strong antibiotics and 2 weeks later he left hospital. Little was known about Lyme disease in the UK back then. 

About 6 months later, Dave suffered from what he was told at the time was post-viral fatigue syndrome. He has to suspend work on his degree as he could only concentrate for 4-6 hours a day. He couldn’t play badminton or squash any longer and got tired after walking short distances. The symptoms were like ME. Dave recovered enough to return to his studies, but his energy levels never returned to normal. Now this would be recognised as Chronic Lyme Disease or Post-treatment Lyme Disease Syndrome (PTLDS). 

A year on, Dave developed psoriasis an auto-immune condition, which attacks the skin, causing skin cells to replicate every 2 to 3 days instead of every 28. His body was covered in very painful sores. Dave was admitted to hospital again for intensive treatment. This included coal tar, topical steroids, dithranol and UV light therapy. During this time Dave’s knees became very painful, and he was diagnosed with Psoriatic Arthritis. Over the next 10 years, Dave had 10 more hospital admissions for psoriasis treatment.

In 2001 Dave was diagnosed with type 1 diabetes, yet another immune system condition. He began to wonder if all these conditions were related. By this time Dave’s psoriasis was being treated by medication, but the treatments had very unpleasant side effects and one had. also caused liver damage. Two years on Dave fell down the stairs, dislocating his ankle and breaking his tibia and fibula. This required four operations and 16 weeks in plaster to repair. 

The trauma of this caused Dave’s first psoriatic arthritis flare. Almost all of his joints were affected. His condition was quickly diagnosed and Dave was fortunate in being able to have a new treatment, an anti-TNF Biologic drug called Etanercept. This was very successful, Dave’s psoriasis went into remission and his arthritis had stopped progressing. However, because of the amount of time he was having off work, Dave was forced to take early retirement. 

Sadly the Etanercept, stopped working after 6 months and Dave was moved onto Humira, which only worked for about 9 months. In May 2009 Dave developed Exfoliating Erythrodermic Psoriasis together with massive internal infections because of his severely compromised immune system. He needed 2 major surgeries to remove infected internal tissue and was in hospital for 7 weeks. 

Dave then needed 6 months off his Anti-TNF Biologic drugs, to allow his body to recover. Those 6 months were hell due to pain and the psoriasis. Dave begged his consultant to put him on a new treatment. He has now been on Infliximab for over 10 years and this continues to work well for him. Dave got diagnosed with fibromyalgia and sleep apnea more recently. He was careful to start shielding several weeks before the first lockdown, and he’s looking forward to being able to leave his home again soon. 

Dave’s story is, sadly, not unusual, tick bites can have devastating consequences. We now know much more about the dangers of tick bites and about Lyme disease, though there is still no cure. Dave’s advice to anyone going to the countryside is:

• Be sure to wear long trousers
• Tuck your trousers into your socks
• Carry out a full body check once home or back at your accommodation
• Carry tweezers or a tick removal tool if you go walking anywhere where domestic livestock or wild animals are present – you can buy one here