May is Lyme Disease Awareness Month
Lyme Disease is a devastating illness caught from infected ticks and a subject very close to our hearts.
Globally there’s been an explosive growth of ticks, coming out earlier in the year and having a longer season due to global warming, and they are now widespread in the UK.
This month’s blog is to try to increase awareness of the horrible disease and hopefully prevent others contracting it. If you know someone with Lyme hopefully Ian’s story will give them a ray of hope.
Ian contracted Lyme Disease as a fit and healthy 30-odd year old, after being bitten by a tick in the Lake District in 2008, but it took over a year of seemingly endless doctor’s appointments for him to be correctly diagnosed.
Everyone with Lyme disease seems to suffer in different ways so it’s a very hard disease to diagnose and it’s also very controversial. In Ian’s case within a few weeks of being bitten, he had severe knee pain that made it hard to walk upstairs, blister rashes on both feet, Raynaud’s syndrome in his hands and he said his head felt like it was being squashed in a vice with his brain bouncing around inside his skull. He started losing his sight for a few minutes at a time, was struggling to concentrate and remember words but worst of all he said he felt like he had the worst hangover imaginable every day, without the fun of getting there. Unfortunately, the doctors would only look at each symptom individually so nothing ever improved.
After many months and appointments, the lack of a diagnosis became almost as hard to deal with as the illness itself for all of us. Eventually, a friend suggested he looked into Lyme disease and recommended a private clinic. We read about Lyme on the internet and although some of the symptoms seemed similar he didn’t have the trademark bulls-eye rash so we didn’t really believe it could be Lyme. But we were desperate and were prepared to try anything to get him better. On the day of his appointment I drove him the 3 hour journey and he just slumped in the car feeling terrible saying this was just another waste of time and money but I insisted we went in. An examination, some blood tests and a few weeks later he was diagnosed with chronic Lyme disease and prescribed a course of antibiotics.
He made good progress for the first 12 months but then started to deteriorate again.
We began to question the diagnosis and sought further opinions which required even more tests. We remember seeing one particular consultant who kept telling us there was no such thing as Lyme disease and the clinic we’d visited were all crooks. Ian didn’t care what name his illness was given, he just wanted to get treated. We needed him to tell us what it was, rather than what it wasn’t and finally after a good few months he concluded Ian was depressed. Ian was so angry – who wouldn’t be depressed feeling so ill for so long but that was simply not the cause of his symptoms.
Ian was forced to give up his job in 2012 as he was too ill to work. Having had no joy in the UK, we realised that although it was expensive he had no choice but to visit Lyme experts in Germany for treatment. He also recognised that he needed to stay positive and have a focus. That’s when PLYT was born. Having PLYT was perfect for Ian because it gave him something to focus on other than the illness and a reason to get up every day plus he was able to dip in and out when he was well enough.
It’s almost nine years now since Ian was bitten and he has made a fantastic recovery.
He still takes a daily cocktail of tablets and has good and bad days but feels hopeful that he has the illness under control. In part that’s due to the German treatments but a long term illness is not just difficult physically, but also mentally. Having a supportive family and friends is very important, but feeling like you’re making a contribution and achieving something is vital. We always say that without Lyme disease there probably wouldn’t be any PLYT, but without PLYT we don’t think Ian would have made the recovery he has. The fact that PLYT has been proven to improve maths, has been endorsed by National Numeracy and kids love it makes Ian realise that he’s done something really positive. He’s continued to develop games and we’ve just launched our new travel game NumBugz and our third game Whotchilli is due out later this year.
We know that many people are sadly already suffering with Chronic Lyme Disease and on a positive note to them there is light at the end of the tunnel – Ian is so much better than he was. 🙂 But we also want to raise awareness of the disease to help prevent others contracting it.
The best way to avoid Lyme Disease is to heed the advice about tick prevention such as wearing long trousers for walking, using insect repellent and checking for ticks after being in the countryside or anywhere with long grass – where the ticks wait to be brushed onto an unsuspecting host. If bitten, it’s important to remove the tick safely ( we always carry a pair of tick removers with us now) and visit the GP if a bulls-eye rash appears or flu like symptoms are experienced. If caught early Lyme can be cured with antibiotics but long term treatments are currently only available in Germany or the USA. For more information visit www.lymediseaseuk.com or if you’ve been bitten and are worried about possible infection visit your GP.