Please read this brief story of my Lyme disease journey so far. It may educate you and your loved ones.
My name is Lisa Vallo and I live in Bingley, West Yorkshire. I have now had Lyme disease around 20 years after being bitten, in my own home, one night by a tick that my cat had brought in.
I woke up one morning to find a black speck stuck to my stomach. I tried scratching it off (worse thing I could have done as it turns out but I was ignorant) then after much effort I managed to pull it off with my nails and thats when I saw it's legs wriggling. I had no idea what it was, and even if I had have known, I still wouldn't have known how to safely remove it! That is why I am now on a mission to educate and hopefully help in the prevention and spread of Lyme disease and other related diseases (which some ticks carry) by setting up this website to provide information to all and to provide a tried and tested tick remover tool, simply called "The TickTool", which I trust implicitly.
This tiny spider like creature that had attached itself to me, had vomited into my bloodstream, probably when I tried scratching it off. Needless to say, it infected me with the Lyme bacteria and I had no clue what-so-ever of the consequences of my actions! I totally dismissed this event until years later when I finally connected my failing health to the removal of the tick!
My health and wellbeing have suffered tremendously trying to diagnose and battle this awful illness, to the point where I was bedridden and saw no future what-so-ever.
Once bitten by a tick, your life may never be the same again if you don't remove it properly (as I found out!). I cannot begin to stress just how important this is.
Happy reading and beware the tick.
Lisa "Lyme" Vallo
Just a small article I wrote for a newspaper...
I call my Lyme 'THE DICTATOR WITHIN'
The year is 2001
This is the story from the perspective of "The Dictator Within" (the Lyme bacteria) having a chat with me and telling me how he's going to devastate my life over the next few years. I have to say, nothing could have prepared me for what was to come over the next decade and beyond! Nothing! It's been an horrendous fight to get my life back from the clutches of the Lyme bacteria.
"Right Lisa, take note, this is how it's going to work...." said the Lyme bacteria from from inside my veins.
"I entered your body through the tick that attached itself to your tummy that night. You remember it, the one off your cat? The tiny little black dot thing that you found hard to pull off! The tiny little creature you totally dismissed! As tiny as it was it contained the most poisonous bacteria imaginable....ME! My name is Borrelia Burgdorferi and I am your new Lyme Disease bacterial dictator that's going to burrow and thrive within the confines of your body forever, as there is NO cure! I will burrow into your tissue, your cells and your organs".
"I am here to dictate how you live your life from now on. I will completely affect your health in every way I can think possible! I'm going to cause you as much misery and hurt as I possibly can and if you don't stay strong and positive I will totally destroy you until there's nothing left. I am hopeful I will take your life in the end! You will have no control over me and no say what-so-ever. You will be ill for most of the time from now on. Every day of your life now will feel like you're coming down with flu or you will at best feel like you have a stinking hangover, and there will be no exception to that rule. I will be there every day! I will dictate your every action".
"Over time you will feel progressively worse, developing strange new symptoms on top of the already feeling ill all the time symptoms. You will experience weird ailments like sore feet, air-hunger, chest pains, anemia, slurring your words, nausea, migraines, muscle spasms, chest pains....and the list will go on. You will feel like I have hijacked your body, and that's because I have! Ha ha ha ha ha!!!!!"
"You will know something is drastically wrong but you wont know who I am or what I am for the next 15 years. All the tests you endure at the hospitals, clinics, etc etc, the x-rays, the scans and the psychological assessments will all prove futile. They won't find anything, maybe a bit of anemia or vitamin D deficiency but that's it! I am with you all the way, day in day out and nobody can find me....I am the supreme champion at hide and seek! You know you're ill but nobody else does because YOU can't prove it, and there's not a test available in this lovely country of ours to prove otherwise! In the beginning I could have been detected with the NHS antibody test but it's too late now, there are no antibodies to me floating around your system anymore...I'm hiding from them, they don't know I'm here! Ha ha ha!!!!
"I am going to do my very best to try and drag you down, make people think you're mad, a hypocondriac, an attention-seeking idiot. You will have no social life and if you do try and participate in anything I will make you feel so tired and ill that you will last an hour or two at best, putting on that brave face that you will have become accustomed to! People will think you're just darn right ignorant and unsociable and they will stop inviting you anywhere!"
"As my army builds and we gain in strength inside your cells, your organs, your tissue, you will, bit by bit, be decaying from the inside. You're head will feel like it's in a vice and you will begin to feel totally useless as a mother, daughter, sister, family member and friend etc etc".
"As the years progress and we multiply further within the confines of your body, you will not be able to take on our mighty power at all and will become so fatigued that you will sleep for most of the time, for days on end. You are unable to fight me. There will be no-one to rescue you. You will be alone. Without the backing of a positive test proving my existence you really are on the road to nowhere Lisa...ha ha ha ha ha!!!!!!!!" declared the deadly Dictator within.
Fourteen years later: 2015
By now I am bedridden for 75% of my life (this is no exaggeration). It just so happened that I was awake enough one morning to catch a clip of Dr Chris Steele chatting to John Caudwell, the founder of Phones4U, who was explaining that 11 members of his family have now been diagnosed with Lyme disease and he spoke in length about his son's battle with the illness and how he had been bedridden for 10 years. It was only a few months ago that I had thought that my mystery illness could be Lyme Disease too but I had had several tests at my GP's in Shipley, West Yorkshire and all had proved negative. Little did I know then that the testing system they use isn't able to detect long term Lyme disease or chronic Lyme disease (an infection older than a few months).
Six months later: January 2016
By now I've taken just about as much as I can. I'm bed ridden for 3 weeks out of 4. I'm ill. I know I'm really ill. I can't stand this any longer. I know there's something terribly wrong. By this time I had started to cry A LOT! I know how strong I am, but I'm losing this battle and my inner strength both in body and now my mind is going...it's depleting now really quickly. I was scared to death! So, it's do or die time...literally! That was how I felt. I thought if I didn't do something soon then I would slip away. Was this the end? Not without a battle. I was desperate. I'd been battling this mystery illness for years, with no help, no support, and more importantly no acknowledgement from anyone except my closest family members and I knew even they found the whole scenario hard to understand.
So, it was back to the doctors for the last time... when I could finally muster up the energy to get out of bed. I begged him to find the answer. He told me he didn't know what was wrong with me, I'd had all the tests going under the sun and that there was nothing he could do for me. I stood up, turned round and walked out of his office in tears and confusion, not knowing which road I was going to take now or even if there was one. I felt so alone and so very sad.
Quite bizzarly and out of the blue, a week later a letter arrived from the the Infectious Diseases clinic in Bradford. How odd! My doctor had obviously had second thoughts and referred me. Naturally, I was elated. Finally someone was listening to me.
Foolishly, I thought I would get somewhere. It was such a relief to me that my doctor had taken me seriously and I felt that finally I was being listened to.
The Infectious Diseases clinic did further investigative tests, including Lyme disease but found nothing. I was made to feel like I was a hypocondriac by several specialists at this clinic and a couple of them would snigger at me and look at me with disdain, like I was unworthy of being there and I was wasting their time. They more or less told me that there was nothing wrong with me.
That was the end of that.
By now I am getting more and more weak by the minute. I finally decide my only route is to pay for private testing abroad. Probably expensive testing abroad at that! I had read about it but hadn't really deemed it necessary as I thought eventually I would just get better or my illness would just go away or my doctor would find the problem! These positive thoughts had kept me going for all those years. I am a glass half full kind of person, I'm happy, cheerful and forward thinking but the realisation that I may never get better or worse had finally dawned on me. I honestly felt that I was nearing an inevitable demise. I wasn't going anywhere except down hill fast! So, I paid privately to have my blood tests done at Armin Laboratories in Germany. I waited a week and my results were sent through to me. They read POSITIVE for Lyme disease. Now you would think that I would be distraught to find this out but NO, I was elated! A diagnosis and proof....whoop! I cried and cried. It felt like I had won the lottery. In fact it felt better than winning the lottery...I'm sure! Then I began to feel very, very angry, having endured all those years with an un-diagnosed illness. I felt bewildered and shocked and above all totally let down by the NHS.
So, what to do now??? The biggest question of them all! Please read "My Road to Recovery" in the top drop down bar.
Lyme disease is estimated to be a bigger epidemic than HIV. Disease carrying ticks are everywhere in the UK. They're in our woodlands, our fields, our gardens and on our pets WHEREVER YOU LIVE IN THE UK.
Contrary to popular belief, Lyme disease is very common, it's just also very common for it to be mis-diagnosed... Could you be living with it?
Lyme disease, if caught early enough can be treated successfully with antibiotics by the NHS! Lyme disease if not caught early enough turns into chronic Lyme disease and is not treated by the NHS.
There is NO known CURE for chronic Lyme disease worldwide. Chronic Lyme disease CANNOT be cured full stop! It is with you for the rest of your life! It can be managed and quite successfully sometimes, although not always.
The NHS do NOT provide any medical assistance what-so-ever for chronic Lyme disease sufferers yet. This is something we chronic Lyme sufferers are trying to change.
1 in every 29 ticks in the UK carries Lyme disease. These are frightening statistics BUT actually living day to day with the disease is even worse (and I know all about that).
Did you know??? Lyme Disease is estimated to be a worldwide epidemic by 2028!!!
There are thousands of people in this country now with Lyme disease. Lots of their stories are similar. Each and everyone's life has been turned upside down by their struggle with the disease. Some sufferers are bed-ridden, some have had heart attacks, some have died!
Lyme disease can be the trigger for lots of nasty illnesses within our bodies to spring into action. It's that dangerous! Lyme can also be mistaken for other serious illnesses like Althzeimers, MS, fibromyalgia, ME, chronic fatigue syndrome, Parkinsons and more than 350 other diseases.
I have set up this website to make you aware of the disease I live with and also to educate you on how you can hopefully prevent it from happening to you or your loved ones.