We are delighted to have been accepted into the Big Give Christmas Challenge for a second year in a row!
It’s the UK’s biggest online match funding campaign, which helps charities raise millions each year, and gives donors an amazing opportunity to double their donation towards the causes they care about.
This year, we’ve upped our target and are aiming to raise £6,000 towards life-changing Lyme disease research!
How does it work?
From 12pm Tuesday 1 December to 12pm to Tuesday 8 December 2019, every donation made via our special Big Give webpage will be doubled*.
So if you donate £10, it becomes worth £20. If you donate £25, it becomes worth £50, and so on.
We know that times are tough for many during the pandemic, and not everyone will be in a position to give. But for those who are able, they’ll have the opportunity to double the impact of their donation and the knowledge that it will reach twice as far.
We need the support of those passionate about our mission to donate whatever they can and help raise £3,000, which will be matched by pledges of £3,000 already secured from generous donors.
Too often, cases of Lyme disease go missed or undiagnosed due to the lack of a truly reliable diagnostic test for the disease. There is also no way to test if treatment has worked, and a patient has been cured.
We want to help improve the lives of the thousands of people who are desperately ill with Lyme disease and either unaware of the true cause of their illness, or who have received inadequate testing and treatment.
You may have seen our recent announcement on exciting future plans for the charity, and all donations made during the campaign will be put towards our Innovation Fund – you can read more here.
Help us make a difference to Lyme sufferers, and double your impact at the same time.
Scroll down to read some real life stories which demonstrate the impact that unreliable testing can have on some patients.
How do I donate?
Only donations made during the campaign dates on our page of the Big Give website will be doubled. This link will go live on Tuesday 1st December at midday.
The campaign will then run until 12pm midday on Tuesday 8 December, unless we meet our target beforehand. We did it in 48 hours last time, so we’re hoping to be as successful this time too!
Donations made outside of these times and dates (or on our Caudwell LymeCo webpage) will still come to the charity, but won’t be doubled or counted towards the Big Give total.
What if I can’t donate online?
If you don’t have access to donate online, and you don’t have a family member of friend that can help you donate via the webpage, then please give us a call on 01630 620523 or email firstname.lastname@example.org, and we’ll try and work out an option for you.
Patient Case Studies
Dan first became seriously ill in 2015, and believes he contracted Lyme on a visit to the Lake District in 2013.
A former bodybuilder, Dan suffered from neurological symptoms, joint aches, tachycardia and muscle twitches.
Despite receiving borderline positive results, he struggled to get a diagnosis on the NHS and a private doctor diagnosed him with Lyme and babesia after getting tests from Igenex in America. He received a month of IV drugs in the UK in 2016, and paid for private treatment over in the USA in 2018. He began to feel around 70% recovered, but suffered a severe relapse in June of this year.
He was admitted to hospital and began IV treatment again which helped with his symptoms, but it was discontinued when they found nothing in his blood test results, and he was discharged.
Dan feels he has been failed by the NHS, who have refused to diagnose Lyme disease and have no further way of helping him. He has a young family to provide for, but has been on furlough and is now very unwell. He wants to get back to private treatment but doesn’t know how it will fund it.
“I have neurological Lyme disease and a whole host of other complications, including severe spinal problems which I will need to have surgery for at some point in the near future. I tested posotove on the NHS, but the treatment I was given hasn’t made fully well again.
I have many symptoms to manage on a daily basis. There are lots of days I have constant pain, real tiredness (fatigue), memory problems, headache and sensations in your nerve endings, which actually feel like electric shocks! Sometimes I feel so incredibly exhausted I simply just don’t know what to do to help myself. But I push through to simply eat something, chat with or text my closest family/friends and at best, go to work. Going to work is really important to me.
Every single day I either need to push myself or pace myself. You might not realise it by looking at me. I look fine and don’t look sick. That’s simply because I’m so determined not to be wholly affected by this horrendous disease and even more so, to keep myself safe and as well as possible with this pandemic.”
Adam never presented with a typical bull’s eye rash, and so his case was at first dismissed as Lyme disease. The only place that his family think he could have been bitten by a tick was in their back garden.
Adam first positive test not acted upon because the paediatrician didn’t believe the symptoms matched Lyme disease, or that the test result was reliable.
They thought his results weren’t indicative of some kind of active infection, not related to Lyme disease. He experienced extreme behavioural changes, regressing to toddler stage, and acting out of character, at times physically attacking the family.
His mum Amy says:
“After four months of undiagnosed illness, Adam began developing severe neurological symptoms due to the Lyme disease infection. At the end of the week where the paediatrician dismissed his positive test result, he woke up screaming with full facial paralysis.
It was at this point that they finally diagnosed him with Lyme disease and encephalitis (swollen brain) and treated him with intravenous antibiotics.
However, the doctors didn’t give Adam the full treatment as recommended in the NICE Guideline, and we had to fight for further antibiotics. We struggled to get this because there is no test for cure for Lyme disease. In the end, we did get the treatment he needed but we have had to pay for some care privately. Adam has had to re-learn activities such as reading and swimming back to his age level.
If doctors had had a more reliable testing process and better knowledge of this disease, Adam would have been treated sooner and perhaps experienced less severe symptoms. We need doctors to be more well informed and for a test that looks at more than just an antibody response, which is how the current test works.”
“My Lyme diagnosis took eight years to reach, by which point the disease had caused absolute havoc in my body.
But, if the correct research and training for NHS doctors was in place, my hope is that others will not have to suffer like I did and can be tested and treated immediately.”
*Donations will be doubled until matched funding of £3,000 is exhausted.