Ticked Off!

Aim

We want to tackle ticks and Lyme disease head-on with a high profile and impactful educational and awareness campaign.

Lyme disease has been labelled “a public health failure” and is one of the most controversial and misunderstood diseases of our time. Also known as Lyme borreliosis, Lyme disease is the only bug-borne human infection in the UK. The disease is caused by the bacteria, Borrelia burgdorferi, which is transmitted to humans by ticks.

A staggering 3,000 new cases of Lyme disease are reported in the UK every year.

Ticks transmit a number of diseases around the world, including tick-borne encephalitis and babesiosis, although the best known is Lyme disease. Lyme disease has now been reported in 80 countries with 300,000 new cases every year in the US alone.

But why the controversy? 

Early symptoms of Lyme disease can include a distinctive target-like circular red rash. The truth is however, only around 2 in 3 people actually experience this. Manifestations of the disease are extremely varied and sufferers may appear to have no symptoms, flu-like symptoms or even persistent and severe neurological and psychological problems.

If Lyme disease is diagnosed and treated early, antibiotics are more likely to be successful. Some people however have a condition coined ‘Chronic Lyme disease’ and experience severe and ongoing symptoms even after treatment. This condition faces scepticism from many clinicians who say there is no evidence that it exists, but for sufferers, Lyme disease is very real and can be debilitating.

Often sufferers exhibiting persistent symptoms have been dismissed, with some patients simply being told that they have psychological issues. This is concerning because a correct and quick diagnosis is crucial to ensure treatment is given as soon as possible.

With no gold standard diagnostic test, subjective symptoms and a very poor understanding of the complications of the disease, many patients are left feeling isolated, confused and unsupported.

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This is what happened to 'Margaret' (not her real name):

"One morning I found a tick on my leg. At the time, I didn’t know about Lyme disease and squashed it mistakenly when I removed it. I am certain it had been attached less than 12 hours as I got bitten nearly every day that particular year and checked myself for ticks regularly.

Some days later a large rash appeared at the site of the bite -I thought it was an allergic reaction as I can get big reactions to mosquito bites. So I ignored it. Sometime later, I saw an image of an Erythema migrans rash on a website and realised that I had contracted Lyme disease. I went to the doctor and mentioned the rash and said I think have Lyme disease but the doctor insisted on a blood test and I had to wait a week for the resultswhich was positive. In the mean time I was extremely worried and very concerned that I hadn’t been given any treatment. I was then prescribed doxycycline 100mg twice a day for 14 days. Towards the end of this I was feeling worse and asked for more doxycycline. I was given another 7 days by another doctor.

I started reading more about Lyme disease as I was feeling worse as the days went on. I then saw another doctor and asked could I have a higher and longer dose of doxycycline (200mg twice a day) (other doctors had refused to give me anymore treatment) which he gave me.  I took two doxycycline and was violently sick, developed a severe headache and had problems with light and sound and my temperature was all over the place.  This lasted for 3 days and I was in extreme agony and had to call out the emergency doctor as I was in so much pain. I did take 200mg twice a day after the first day being sick. I had read about the Jarisch-Herxheimer reaction so knew that the symptoms were probably down to that so I had to endure it. Once out of bed I was still very tired, had aching joints, difficulty walking, double vision problems, brain fog, jaw ache, yawning a lot, headaches, memory and speech and sentence construction difficulties, bony lumps on joints. My hair got very thin.

When I finished the antibiotics, most symptoms had improved but I felt very depressed and my vision was still bad. It took some years for my double vision to disappear. However I now (12 years on) feel fully recovered and my joints are fine now – one doctor had dismissed my joint problems (before I got the higher dose of doxycycline and the Herx reaction) putting it down to age, joked  that he had problems with his joints at times.

So I fully believe that had I had only three weeks of 100mg twice a day I could still have many ongoing symptoms."

(Case study kindly provided by the registered charity, Lyme Disease Action)

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We want to change this! Your support of this campaign will make it possible for us to:

• Educate the public in Lyme disease and the dangers of ticks, how to prevent tick bites, and how to remove ticks safely;
• Get the public, medical professionals and policymakers to acknowledge the complexity of the disease and the needs of patients;
• Lobby the UK government to commit to more funding for research on ticks and Lyme disease diagnosis and treatment.

The Ticked Off! Campaign has been devised by ARCTEC and the London School of Hygiene & Tropical Medicine, as part of the very successful Bug Off! travel health campaign, which reached 25 million people last year!

We are teaming up with UK charity Lyme Disease Action to help achieve our goals .

Ultimately, we need more research, more funding, and more attention on this disease. Ticked Off! is for everyone and anyone interested in, or affected by, Lyme disease.

Fundraising targets:

£2,000  Would allow us to produce educational materials for the public and healthcare professionals to provide education and to raise awareness of ticks and tick-borne diseases

£5,000  Would allow us to produce a short educational film explaining how to protect yourself from tick-borne diseases

£15,000  Would fund a series of educational public talks on tick-borne diseases, prevention, infection and research

£20,000  Would fund a large stunt to launch our Campaign and to engage with the media and policymakers

£30,000 Would allow us to create an app for tick-related public health information, to make sure you stay protected while you’re on the go

£50,000 Would fund the development of a virtual reality game, to educate the public on the biology of Lyme disease for use at public engagement events and to be provided free-of-charge to schools, to keep our children informed and safe.

This project successfully funded on 27th July 2018