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Wake Up To Lyme

Lyme Disease UK urges public to Wake Up To Lyme as symptoms overlap with COVID-19

 

After a year of COVID-19 related lockdowns, and the approaching warmer temperatures, many of us are eager to get back outside. On the path to normality, we will need to continue to observe the guidelines that protect us from coronavirus and support the NHS, but also Wake Up to Lyme.  The symptoms of acute Lyme disease can overlap with COVID-19 symptoms, with fatigue, fever and exhaustion being common in both cases. Yet it is largely unknown, and very often untreated or misdiagnosed.

As we return to parks and private gardens, both being places ticks are active, it’s important to be aware of how to prevent tick bites, know what to do if we are bitten and help prevent further cases of Lyme disease this summer.

 

  • Lyme disease is on the rise in the UK.
  • Lyme disease can bring on a fever, arthritis-like pain, headache, chills, fatigue, muscle aches, and swollen lymph nodes.
  • Many people develop a skin rash around a tick bite within a few weeks after being bitten. But not everyone gets it.
  • If caught early, Lyme Disease can be treated with antibiotics.
  • Some people who are diagnosed and treated for Lyme disease continue to have symptoms, like tiredness, aches and loss of energy, that can last for years, with symptoms that are often compared to fibromyalgia and chronic fatigue syndrome.
  • Because it is not clear why this happens to some people and not others there’s no agreed treatment.
  • There are no tests for cure or ongoing monitoring.
  • Co-infections may complicate the treatment picture.

 

UK registered charity, Lyme Disease UK, will be carrying out their fifth ‘Wake Up to Lyme’ campaign this May, International Lyme Awareness Month. Lyme Disease UK is a volunteer-led charity that offers support for Lyme disease patients and their loved ones.

 

What is Lyme disease?

Lyme disease is caused by a spirochetal bacteria from the genus Borrelia. It is most commonly transmitted through the bite of an infected tick. Public Health England estimate that there could be around 3,000 new cases per year. Data is incomplete and the true number is likely to be much higher. Lyme Disease UK have a detailed and comprehensive guide available on their website and want to help the public wake up to how vital prevention and early intervention can be. We can still enjoy and be amongst nature but rather be informed as to what steps should be taken in the event of a tick bite:

“We don’t want people to be scared of going back outside as the lockdown measures are gradually lifted, but rather go out armed with the facts and knowledge they need to protect themselves and others from Lyme disease. Early intervention is key, and getting that message out to the public is crucial.” Natasha Metcalf, Co-founder and Chair of Lyme Disease UK.

 

Are current testing methods are inadequate? 

Many tests give false negative results, and we do not have a test which can tell us when Lyme disease has been cured. It is essential for doctors to be aware of the signs and symptoms of the disease so that it does not go undiagnosed. Many doctors are unaware of the NICE guidelines for Lyme disease which were published in 2018 or The RCGP’s Lyme Disease Toolkit.

Treatment is more likely to be effective if Lyme disease is diagnosed early. 

“Greater awareness of the risks may also lead to more rapid diagnosis and treatment which is important to prevent long term morbidity.” says British Medical Journal.

 

Can symptoms vary significantly?

Early symptoms can include an erythema migraines (EM)  rash in the shape of bull’s-eye  (but the rash can also be atypical in appearance), swollen glands, fever, headaches, numbness and tingling, muscle and joint pain and fatigue. If the disease is left untreated it can result in cardiac problems, chronic pain, neurological complications and other disabling symptoms.

Awareness is crucial as people need to learn how to protect themselves, their families, and their pets from this potentially debilitating disease.

 

What is the impact?

Lyme disease is a serious illness that has a huge impact on the lives of those suffering with it. However, it is preventable and treatable. Current sufferers face a high chance of misdiagnosis as Lyme symptoms mimic other conditions, such as ME/Chronic Fatigue Syndrome, arthritis, fibromyalgia and depression. Lyme Disease UK hopes to spread valuable knowledge throughout the public as we collectively wake up to Lyme.

The campaign aims to:

  • Alleviate pressure on NHS services by reducing the incidence of patients seeking medical attention for tick bites.
  • Make local communities aware of how to prevent tick bites and reducing the likelihood of more people contracting Lyme disease.
  • Share advice on how to safely remove a tick.
  • Inform people that if they do become unwell following a tick bite, they should seek early treatment from their GP to stand the best chance of recovery and avoiding complications.

 

What are the facts?

For a disease that many of us know little about,, it is more common than we believe. Let’s consider the facts:

  • There are around 2000-3000 new cases each year in England and Wales according to Public Health England.
  • However, cases may be three times higher than estimated, as this figure is based on positive blood test results and excludes all clinical diagnoses of Lyme disease, including people diagnosed based on the presence of a Lyme disease rash.
  • A third of people don’t get the rash.
  • Ticks are found in urban parks and gardens and in every county in the UK
  • In 2016, the Big Tick Project discovered that a third of dogs checked in a study had ticks attached which their owners did not know about.

 

Why do we need to wake up?

Lyme disease is considered an invisible illness, and the implications are isolating, frightening and expensive. With little help available through the NHS, the Wake Up to Lyme campaign hopes to prevent tick bites and provide key knowledge to those who are concerned they have been bitten. Only by sharing this knowledge can we support those who are suffering, and ensure that as few people as possible are impacted.

Public Health England estimates that there are around 3,000 new cases per year but the true number is unknown, and likely to be far higher. The fact is that thousands of people will be infected this year and many are likely to be undiagnosed or under-treated. This may leave them with slowly developing disabilities which are misdiagnosed as conditions such as chronic fatigue syndrome, depression, fibromyalgia, Alzheimer’s and multiple sclerosis. Many of the members of Lyme Disease UK’s Online Community group have had difficult and prolonged experiences trying to obtain an accurate diagnosis.

The #WakeUpToLyme awareness campaign aims to reduce the number of new infections and educate people on how to enjoy the outdoors safely.

 

Case studies and stories:

Examples of patient stories can be found here:

https://lymediseaseuk.com/category/patient-stories/

Find out more at www.wakeuptolyme.com where you can request awareness information, join in on social media using #WakeUpToLyme  #LymeDiseaseAwarenessMonth, and donate to Lyme Disease UK. You can also learn more about the complexities of Lyme disease testing, diagnosis and treatment at www.lymediseaseuk.com. 

 

About Lyme Disease UK:

Lyme Disease UK is a UK registered charity providing patient support and raising awareness of Lyme disease. We are the largest patient support network in the UK and we have nearly 12,000 members in our Online Community on Facebook. We are stakeholders in the NICE Lyme disease guidelines and were stakeholders in the independent reviews on Lyme disease commissioned by the government. Our mission is to prevent any more UK residents from facing the devastating consequences of being misdiagnosed and untreated for Lyme disease.

We hope to achieve this by working to ensure that:

  1. All front line medical staff in the UK are aware of Lyme disease and at least one doctor in each team has completed the RCGP online course on Lyme disease.
  2. Every UK household is aware of the risk of tick bites and Lyme disease and understands prevention methods and symptoms to look for.
  3. We provide support and knowledge to every single UK resident who is infected in 2019 as well as continuing to provide support to those already suffering with Lyme disease.

 

Contact

Contact the press office: media@lymediseaseuk.com or on  Julia Knight, Press and Community Outreach Manager 07943180919

 

Media

Awareness animation – https://youtu.be/rY9R-v-zGlA

Animation for health professionals – https://youtu.be/6VElQNNRZ0o

Patient perspectives on living with late Lyme disease –  https://youtu.be/bIAmsDwGMQQ

Living with late Lyme disease – https://youtu.be/5AmpJXeTJa0

Lyme Disease UK can put you in touch with Lyme disease sufferers, doctors and other experts to aid your work. Some of our Patient Ambassadors can be found here https://lymediseaseuk.com/2017/01/16/spokespeople/

 

Facts and stats are available in our Media Centre here: 

https://lymediseaseuk.com/2017/01/16/facts-and-stats/

Website: www.lymediseaseuk.com 

Facebook: facebook.com/lymediseaseuk

Twitter: @UkLyme

Instagram: @LymeDiseaseUK 

 

Lyme Disease UK is a charity run by volunteers.
Registered charity number 1182212.
Address: PO Box 177, West Wickham, BR4 4BN