Elaine Griffin from Ireland has been suffering with poor health for 24 years. Here she talks about getting an eventual Lyme disease diagnosis, her fundraising and creating her awareness music single ‘Once Bitten Twice Shy’ which includes tick prevention information and a tick remover.
My name is Elaine Griffin and I am a 42 year old musician and artist from Ireland. After 24 years of none stop chronic illness and endless misdiagnoses, I was finally diagnosed with chronic Lyme disease and 10 co-infections and viruses this time last year. As I write this I am siting in Healdsburg, California, with a IV flagyl drip going into my arm, on week 6 out of 10 of scheduled IV treatment.
As for so many of you who are familiar with this disease, it has been a rollercoster of a year. I have been trying to get my head around the multi-layered complexities which this illness brings both physically, mentally, emotionally and politically. There are so many complications, restrictions and brick walls as well as mountains to climb that it has been very overwhelming at times. Thank goodness for Lyme Disease UK, Tick Talk Ireland and for all of my Lyme friends for keeping me sane throughtout this steep learning curve!
My own story in a nutshell goes something like this:
When I was 18, I came down with a very severe bout of mononucleosis, commonly know as glandular fever. It was so bad that I was hospitalized twice and I never felt like the same person again afterwards. That period of illness marked the beginning of a downward spiral in my health which has continued for the past 24 years.
My journey of discovery has taken me across the globe, seeking treatment in Ireland, Australia India, Germany, the UK and now the USA, costing literally hundreds of thousands of euros. This was before I even started to treat Lyme disease.
In the last 10 years alone I have been diagnosed with palindromic rheumatism, fibromyalgia, macrocytic anemia, adrenal insufficiency, thyroid hormone resistance, leaky gut and reflux, chronic fatigue syndrome, myalgic encephalomyalitis, persistent high grade cervical dysplasia, depression, anxiety disorder, PTSD, chronic lead and multiple heavy metal poisonings, carpel tunnel syndrome, TMJ, recurrent sciatica, irritable bowel syndrome and the list goes on and on….. a story that I know, unfortunately, so many of you share.
After a short stint at a clinic in Germany I am now under the care of a clinic in California which is better placed to deal with my various complications and complex genetics and so far the treatment is going pretty well, all things considered.
So much of this past year has been spent reading books, having tests done, trying to get the measure of my own particular set of symptoms and problems, searching for treatment clinics and raising the funds to get to this point. There is so much to learn about the stealthy antics of these bacteria and how they disable us in so many ways.
After all the research I have done over the past year, I never cease to be shocked and annoyed by the staggering lack of information available to the general public about this disease and how to prevent it that should be, in my opinion, provided by our national health programmes.
As we know, chronic Lyme disease is a controversial diagnosis and the medical world is split in their opinions on diagnostic tests and treatment protocols. This doesn’t mean that they shouldn’t be rolling out public awareness campaigns to warn citizens of the real risks of contracting acute Lyme disease, when they readily accept its existence.
Lyme disease does not discriminate. You can be rich or poor, old or young; everyone is at risk. In the meantime, until a general consensus is reached (which could take years), hundreds and thousands of people continue to contract this disease across the world as a result of a lack of basic information. This is something I find unacceptable.
I have therefore put on my creative thinking cap to come up with ways of spreading the word about Lyme. I have quite a few ideas for raising awareness and for educational projects which I’d like to roll out over the next year or two, depending on how my health and energy levels are. I am delighted to say that the first of these has been realised in the form of the Once Bitten, Twice Shy Lyme Prevention Pack, which I recently launched for sale on my website www.elainefightslyme.com
The pack contains a copy of my awareness raising song, aptly named, “Once Bitten, Twice Shy”. For the uninitiated, Once Bitten, Twice Shy is, for all intents and purposes, a regular song expounding the trials and tribulations of unrequited love. However, Once Bitten, Twice Shy is actually a cautionary tale of contracting Lyme disease as the song lists the signs and symptoms one might expect to experience when bitten by the bug……and we ain’t talking LOVE, in this instance! I’m really hoping the song will serve to reach people who may not know about Lyme disease, but who will do, once they have heard the lyrics and read the informative CD pack.
The CD pack includes essential information on how to prevent Lyme disease, instructions on how to remove an embedded tick properly and a credit card style tick remover do it with. The tick remover tools that come with the CD pack were donated by Bjorn Bagger of Safecard Denmark, who like me, was affected by Lyme. He wanted to do something to help prevent the spread of the disease and so he put his creative mind to designing this nifty, scientifically proven tick remover card. He has subsequently sold over 12 million of them! He was very excited to get on board with this project and I am so very grateful to him for his extremely generous donation which will enable me to help people prevent contracting Lyme Disease.
The CD pack is an ideal and meaningful Christmas gift for joggers, hikers, gardeners, farmers, golfers, fishermen, pet owners and anybody who spends time in the great outdoors. Retailing at only €10 (approximately £8), it is an affordable gift for loved ones and friends and it will help raise awareness of Lyme disease so that more unsuspecting people don’t end up in the same position as me. You can avoid exhausting Christmas shopping and just order these online, to be sent to your home or any other address you specify.
“10% of total sales goes to support Tick Talk Ireland, Ireland’s Lyme disease awareness and support group, and once production costs come out, the rest is going into my treatment and awareness campaign fund, so that I can get better and keep on spreading the word.
If you would like to purchase a CD pack or make a donation to Elaine’s treatment and awareness campaign fund go to www.elainefightslyme.com. Last date for posting to UK in time for Christmas is 19th of December.