Using creativity in the battle against bugs
The fight against Chronic Lyme Disease and co-infections is an epic one.
Without proper recognition from the medical mainstream and little to no insurance cover for the astronomical medical costs involved in treatment, Chronic Lyme Disease patients are getting whacked on all fronts everyday.
Despite the fact that they continually struggle with often very debilitating and frightening symptoms, they then have to navigate in a world which does not recognise them and their condition. They have to convince their doctors and their families and friends that they are truly, seriously sick and then they have to find some way to pay for the astronomical costs of their treatment. To live in the world of Lyme is to live in a parallel universe.
So now I’m whacking back!
My name is Elaine Griffin and as a musician and artist I am using my creative talents to raise awareness of Lyme Disease, to highlight and offer prevention methods while raising funds for my own treatment.
Progress on understanding Lyme Disease is slow. The resources are not being put into sufficient research to better understand this disease and help treat it. All the while, more and more people continue to get infected due to lack of awareness, public information programmes and the refusal of the system to acknowledge the scale of this problem – and that’s what BUGS me most!
It may take decades for proper understanding and treatment protocols to be put in place, so in the mean time I’m doing what I can to get this information into as many homes as possible through my music and art.
I don’t want another single person to have to go through what I and hundreds of thousands of others are going through everyday…
My CD Pack
So I’ve written a song called “Once Bitten, Twice Shy” and I’ve recorded it along with my specially put together band, aptly named THE TICKETS!
It comes in a CD pack which opens out to contain information about Lyme Disease, what to do if you get bitten by a tick and a very nifty tick remover card to do it with, along with useful links to other websites.
It makes an ideal gift for joggers, hikers, gardeners, farmers, golfers, freshwater fishermen, pet owners and every body who enjoys the great outdoors.
10% of total sales goes to ticktalkireland.org, Ireland’s Lyme Disease awareness, prevention and support group.
So, with Christmas coming up here’s a perfect gift solution which is very affordable, can save lives, can raise awareness, can help to prevent debilitating disease, helps fund ticktalkireland and helps fund my treatment so I can continue to spread the word and Fight Against Lyme. … NOW THAT REALLY PACKS A PUNCH!!!
Listen to the songRead the story behind the song
Read my story
When I was 18 years old I came down with a very severe bout of Mononucleosis, commonly know as Glandular Fever. It is not unusual at that age to get this virus, which is often referred to as the kissing disease. What was unusual about me getting this virus is that I never, ever felt like the same person after it, and that period of illness marked the beginning of a downward spiralling of my health on a steady and ongoing basis for the next 24 years, right up to today.
So what happened in my body at that time to kick start a slow and debilitating demise of my health and wellbeing, manifesting an ever increasing range of symptoms in a growing number of body systems?
After 24 years of misdiagnosis and non-stop searching for explanations for my ever increasing list of health issues, I now have that answer … Lyme Disease and co-infections.
My journey to this point of discovery has taken me across the globe, seeking treatment from Ireland, Australia, India, Germany, the UK and now the USA, costing literally hundreds of thousands of euros at this stage, and I share it with you now in the hope that it will prevent other poor souls from encountering the same fate.
After in-depth testing in a specialist laboratory in Germany last December, I now know that I had been infected sometime prior to my Glandular Fever episode, most likely in childhood, with Borrelia Burgdorferi, the disease forming pathogen that causes Lyme Disease. Not only that, but I was also infected with a whole host of other tick-borne diseases, including erlichia, yersinia, toxoplasma gondi, mycoplasma, anaplasma and coxsackie virus to name but a few. In all I have been diagnosed with 10 other bacterial and viral infections on top of Lyme Disease. Some of these are tick-borne and some I have picked up and can’t shake due to the suppression of my immune system by the high bacterial load I am carrying.
These bacteria had been operating on a low-grade level in my system for at least a decade before the Glandular Fever kicked in. My immune system had been managing to keep them under control all of that time but the infection with Glandular Fever reduced the immune system’s efficiency enough that it allowed all of the pathogens to get the upper hand and proliferate. My mononucleuosis infection at the time was so severe that I was hospitalised on two occasions.
When I look back on it now I can see how I suffered with recurrent infections of the tonsils and sinuses for years prior to the Glandular Fever episode, ultimately resulting in a tonsilectomy. There were also lots of other “random” issues presenting for me health wise in my teenage years, which I now understand to be part of the Lyme Disease jigsaw, that took so many years to put together. Obviously the immune system was already struggling with the bacterial burden at that stage and the Glandular Fever was what finally tipped it over the edge.
Following my discharge from hospital, I suffered from extreme fatigue, which was to be expected after such an acute viral infection. Gradually I began to develop severe musculoskeletal problems and pain, initially in my spine, but then spreading to my neck, knees, feet and eventually to all of the smaller joints in the body. I was so fatigued I would fall asleep anywhere and everywhere …
It was explained that this was post-viral fatigue and that it would eventually go away.
Ultimately it never did go away and instead I could only continue to add to the list of problems that were manifesting in my body as it became ravaged by the bacteria that were happily inhabiting it. In the last 10 years alone I have been diagnosed with palindromic rheumatism, fibromyalgia, macrocytic anemia, adrenal insufficency, thyroid hormone resistance, leaky gut and reflux, Chronic Fatigue Syndrome, Myalgia Encephalomyalitis, persistent high-grade cervical dysplasia, depression, anxiety disorder, PTSD, carpal tunnel syndrome, TMJ, recurrent sciatica, irritable bowel syndrome and the list goes on and on.
I have suffered from chronic lead and multiple metal poisoning as a result of my faulty genetics and the suppression of my immune system, due to the massive bacterial load I am carrying. My immune system is shot – I have had shingles flare-ups 8 times since last December alone. I have lost track of the consultants and practitioners I have seen in the last 10 years, but it is at least 30 across the globe, all of whom acknowledged that there was something going on but never finding the ultimate cause.
Lyme Disease, caused by the spirochetal bacteria Borrelia Burgdorferi, can manifest symptoms in every single body system. Its corkscrew shape allows it to literally drill through the connective tissues throughout organs systems, the blood, skeletal and muscular systems and the central nervous system, wreaking havoc on the entire functioning of the human body.
There is a very poor understanding of this disease in Ireland and consequently there are very limited treatment options available, although the HSE did finally come out this year warning of the presence of Lyme Disease here, which is transmitted by a tick bite, so that is a start.
I initiated treatment with the leading European Lyme and Tick-Borne disease clinic, the BCA in Germany last December, but due to length of time left undiagnosed, which has resulted in multiple system problems in my body, coupled with some profoundly mutated genetics, they were not able to deal with me and I am now forced to seek treatment in the USA, as these are the only people who have the knowledge and experience to manage my very complex case. At the time of writing, I am currently undergoing intravenous antibiotic treatment at a specialised clinic in California as the first step in what will be a very long battle to regain my health.
I have set up this website and am dedicating my creative energies, whenever is possible, to devising and producing projects and works that to raise awareness of this crippling and under-acknowledged disease to help spread the word and prevent others from having to suffer the same fate.
Our lives are too precious to be obliterated by this potentially fatal disease and the ignorance that surrounds both its existence and treatment.
Listen to more of my story on this radio interview with Johnny Oosten from CRCFM
Hear my story
Radio interview with Joe Duffy
Radio interview with Johnny Oosten from CRCFM