The primary objective of LymeAid UK is to provide grants to people on low income who suspect they have Lyme Borreliosis for private overseas testing for the disease.
LymeAid UK was founded in March 2014 by Sophie, Val and Holly. We registered with the charity commission (number 1166214) in March 2016, thanks to the help of our supporters. In late 2020 we were joined by Nicole.
Please note that this means we are only allowed to fund patients from England and Wales.
Holly and Sophie launching LymeAid UK at the 2014 national awareness drive and protest
Grants for private tests are given out by LymeAid UK twice a year to as many people as there are sufficient funds for, with priority being given to people with the highest likelihood of having Lyme disease, with low or no income, who have already received a negative NHS test and who have a plan to seek treatment should they test positive. We will pay for your test directly with the lab.
Patronage
We are proud to say that Spencer Kelly, presenter of the BBC TV technology programme Click is patron of LymeAid UK.
“I had never heard of Lyme Disease until a few years ago, when my sister started to try and find out why she was getting extreme pain in her fingers, wrists and legs. The pain spread, the exhaustion set in, she had to use a wheelchair, and her career as a vet came to an end.
And it was only because she knew so much about medicine, that she knew how to get more information about her symptoms. She had to raise money to go to the US for tests, where Lyme Disease was finally confirmed.
There is nowhere near enough education in this country about Lyme Disease - the early symptoms are often missed and the later symptoms are misdiagnosed. The later a diagnosis comes, the worse it can be.
I don’t want anyone to have to go through what my sister went through, or even worse, have their Lyme disease go undiagnosed and untreated, and their lives destroyed completely.”
In 2018 Spencer went on celebrity mastermind in aid of LymeAid UK, raising valuable funds and awareness for us.
A positive Lyme Disease test can be the difference between getting treatment on the NHS or not; or being able to successfully fundraise for and obtain private treatment or not. No test exists to rule out Lyme Borreliosis but the majority of NHS doctors will not treat based on a clinical diagnosis alone. The NHS relies on 2-tier antibody testing which does not allow for undulatory antibody response, lack of antibody production due to natural variation, variation in performance between different test manufacturers and abrogation of antibody production by immunosuppressants (steroids) or early insufficient antibiotic treatment.
Overseas labs have CE marked tests which either do not rely on antibody testing or do more sensitive antibody testing with additional "bands" not included on the NHS tests, giving less chance of a false negative test. Sadly, these tests cost in the region of £500 per person, leaving them out of reach for many people, especially those who have been ill for so many years that they can no longer work.
The labs used for testing will be Igenex, USA or ArminLabs, Germany with the choice being left to the patient. ArminLabs has been accredited by the Deutsche Akkreditierungsstelle GmbH (DAkkS) (German Accreditation Board) and generously offers discounted tests to those we directly fund, so that we can help more people. Igenex has been accredited by the Centers for Medicare and Medicaid Services (CMS) and holds California, New York, Maryland, Pennsylvania and Florida licensure since these States require a separate license to perform testing for patients.
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