When Meryl Davies, of Brecon, Powys, was a child in the 1950s she was bitten by a blood-sucking tick which infected her with Lyme disease.
Here, she explains more about the debilitating condition and why it took until only last year to diagnose it.
Every summer when I was a child, my sister and I would spend a magical few weeks holidaying at my father’s home farm in the Elan Valley.
Those seemingly endless summer days gave us ample opportunity to explore the surrounding countryside.
The year that I was seven years old, I returned home with a red circular rash on my lower leg.
I recall the adults discussing what it might be and my father resolutely declaring that it was not ringworm.
I fail to recall whether I was taken to a doctor, but perhaps by the time such a visit could have been arranged, the rash would have faded and everybody would have thought that the problem had gone away.
Unfortunately, the problem definitely had not gone away. The tick that had bitten me was infected with Lyme (also known as borrelia burgdorferi) and would transfer the infection to my blood.
Within 12 hours the infection reached my brain and subsequently the bacteria infiltrated my lymph system to begin a trail of chaos.
Looking back, there were early symptoms. I remember my mother fretting about the thick welt of lymph that appeared at the top of my leg and the sudden lapses of comprehension and concentration when I had previously been regarded as a bright child.
Perhaps most tellingly, without a whimper I gave up my beloved ballet classes because I could no longer find the energy to take part.
I could not have known it, but this was merely the start of a terrible trail of seemingly random, distressing and painful symptoms that would steal the life from me and undermine my capabilities.
My childhood tick bite happened many decades ago. It would be reassuring to think that a child similarly bitten today would not sail under the radar, but would be diagnosed and receive the treatment that they need – but somehow I doubt it.
My own experiences have shown me that there is a worrying lack of knowledge regarding diagnosis and treatment of Lyme in the Welsh NHS.
Four separate doctors have told me that they know nothing about Lyme, while one GP went as far as to say that they did not treat Lyme in their practice.
The World Health Organisation has recently deemed Lyme to be the fastest-growing disease in the world.
Surely this is of particular concern in Wales given our “tick-friendly” terrain and our abundance of livestock that harbour ticks.
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Admittedly, there is currently a poster campaign warning of the dangers of tick bites and urging us to be Lyme aware.
It is important, though, not to overlook that other insects such as horse flies, mosquitos and spiders are capable of carrying Lyme.
The public also needs to be aware that less than 50% of people who are bitten present with the “bullseye” red rash.
It would appear that in Wales we are lagging behind other countries in taking measures to address the global impact of this destructive disease.
France, for example, has a one-stop clinic with facilities to conduct the necessary tests under one roof, while the Netherlands is so Lyme aware that it is virtually considered a possibility in every patient profile. It is alarming to note that the NHS in Britain has not one Lyme specialist.
People with Lyme are committed to spread the word from person to person, town to town, country to country.
There is a right to safe healthcare and we will not let the current culture of error and denial, continue.
We call for honesty, openness and transparency. We will make the reduction of healthcare errors a basic human right that preserves life around the world.
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I have tried desperately to regain my health and to acquire an accurate diagnosis that would explain my diverse symptoms.
I received a number of diagnoses along the way: ME, fibromyalgia, chemical sensitivity, polymyalgia rheumatica, facial palsy, trigeminal nerve pain, tachycardia and atrial fibrillation being some of the mix.
Many of my symptoms were “stand-out” Lyme flags and I believe that had I been fortunate enough to have had access to a Lyme literate doctor then I would have received an earlier diagnosis.
In any event, I finally received a diagnosis for Lyme just over a year ago.
Having suffered for so many years, I was firmly in stage three Lyme territory and as such, had begun to notice the destructive effects that Lyme has on skin.
The twists and turns of navigating the dermatology departments of south Wales with a view to receiving some intelligence regarding third stage Lyme are really worth a tome all of their own.
Suffice to say, I have not encountered one consultant in the NHS who appears familiar with the hallmarks of late stage Lyme (or indeed any stage).
At one time I was obliged to visit three separate consultants in three different hospitals in connection with what I now know to be Lyme lesions on my nose.
This really is not joined-up medical treatment and cannot be cost effective. More worryingly, I was wrongly diagnosed as having skin cancer and only at the 11th hour did I pull myself out of surgery through a combination of blind fear and sheer gut instinct.
Later, as lesions appeared on the tops of my feet, I again sought medical advice and once more drew a blank.
I noticed that the rash was similarly sited on both feet and felt that it must have something to do with the lymph system.
Reading up on lymph, I discovered the lymph-Lyme connection – a eureka moment.
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I requested a Lyme blood test, which came back negative, but convinced that what I had was Lyme, I paid for tests at Armin Labs in Germany.
At last I had the reason for my decades of woe – current cellular activity against borrelia burgdorferi.
One could be forgiven for thinking that with any sort of positive Lyme test, your GP would show some concern and instigate a treatment plan. This was not to be the case.
I now find myself alone and utterly unsupported by the NHS as I continue my battle with the disease.
It is a costly and arduous road. I have been fortunate to have received help locally from a number of private practitioners who have been able to advise and support.
I am also grateful to the Caudwell LymeCo Charity for the excellent information provided. Recently, I have started on a different herbal protocol prescribed by Liz Sanders, a gifted and instinctive herbalist and have been heartened by my results so far.
I am saddened to have experienced such reticence by the medical profession in Wales in heeding the dire warning of the World Health Organisation and to accept that the Lyme genie is well and truly out of the bottle.
I feel that the medical profession lacks competence regarding the many facets of Lyme and wonder just how many people in Wales are undiagnosed.
Those care-free days of summer may never come again for successive generations of Welsh children as the lurking danger of Lyme is pushed to the forefront of this ever-changing world.
