After several years of searching for answers to my ‘mystery’ condition, I was diagnosed with Lyme Disease last June – almost a year ago now. A year before that, my pain consultant had suggested I get tested for Lyme which came as a bit of a shock as I had never really heard of it before, and neither had my family or friends so we resorted to Google to find out more. I had an initial NHS test done which came back positive, but then a few weeks later, after my consultant requested a more in-depth test and then got a second opinion on the results, I was told I didn’t in fact have Lyme Disease after all (despite the fact that the second test had in fact produced two positive bands). After coming to terms with the conflicting diagnoses, we decided to focus on managing my symptoms for a while and it was another year before we took the plunge and got tested privately in Germany as we were never satisfied with my NHS results and Lyme was always at the back of my mind due to ongoing symptoms. The private overseas testing confirmed that I definitely did have Lyme Disease together with several co-infections and viruses (you can read more about my experience of testing here). Sadly, this sequence of events is not unusual and is often the story for many sufferers. In fact, I am probably one of the lucky ones who, by persisting in searching for answers outside of the UK, finally got the correct diagnosis. Some people go decades without finding answers and are often misdiagnosed due to the lack of knowledge and experience of doctors in this field in the UK.
Very recently, awareness of this disease has been raised by stories in the media not just by everyday people but also by celebrities such as Yolanda Hadid, Avril Lavigne and John Caudwell. It seems that more and more people are coming forward, sharing their stories and helping it to be recognised. This has led to a lot of people, previously diagnosed with conditions with very similar symptoms such as MS, ME/CFS, ALS, finding out more about Lyme, asking questions of their specialists and then getting tested, in the search for that elusive diagnosis. Now when I mention Lyme to friends or friends of friends, some of them have heard of the disease and know a little bit about it. This is a great start, although there is still much to do in terms of improving the methods of testing and diagnosis here in the UK as nothing has changed yet. Testing methods here are unreliable (we believe they can miss up to 60% of cases) and treatment is often limited to a few weeks of one single antibiotic if you are lucky enough to get a positive test result and have a lyme sympathetic doctor. If the disease has become chronic (i.e. you have had it for more than a few months) this length and simplicity of treatment would not rid your body of the disease. Recommended treatment protocols for chronic lyme would include multiple antibiotics over a long period and/or strong antimicrobials as well as immune support, good detoxification and effective supplements. What’s scary is that the incidence of Lyme Disease has quadrupled in the last decade due in part to climate change with warmer winters prolonging the lives of ticks, leading to more and more people either knowingly or unknowingly getting infected.
At this very moment, so many people are suffering with excruciating nerve and joint pain, confusion & memory loss, dizziness & cardiac problems and other life-changing symptoms as a consequence of undiagnosed or untreated Lyme Disease. I have come across many people in the chronic illness community and friends of friends, who either suspect they have Lyme and don’t know where to go for help, or who have been diagnosed with Lyme but can’t access adequate treatment here in the UK (there is only one specialist clinic and it is private and very expensive). Most people can’t afford to go abroad to find a specialist (there are private lyme disease clinics in other parts of Europe and in America who specialise in treating this complex disease). It’s very poor that knowledge and funding within our health service is so inadequate and completely inexcusable that so many people are left to suffer as a result.
Please participate in the Lyme Disease Challenge. It’s a fun and simple way to raise awareness and to support much-needed Lyme Disease research. This is how you take part:
- Get some limes.
- Take a bite out of your lime and take a picture or video of yourself doing it.
- Post the photo or video to social media using the hashtag #lymediseasechallenge along with a short fact about Lyme disease if you have one that you would like to highlight.
- Make a donation if you can, large or small, to help Lyme disease research.
- If you are unable to donate, do the challenge anyway. And challenge others to do the same.
I did the challenge last year too and posted the video here. This was before I had my lyme diagnosis from Germany.