L-R: Fiona Quilter, Miriam Morrison and Avril Winters who are all part of the North West Lyme Group and suffer from Lyme Disease. Pic: Sinéad Healy
Lack of awareness of
Lyme disease in Ireland means the illness is under reported and often goes
un-treated. Lyme disease is an
infectious disease caused by the Borelia bacteria and is transmitted by infected
Ticks.The most common sign of
infection is an expanding area of redness or what’s commonly known as a
‘bulls-eye rash’(pictured).
(Bulls Eye Rash: Pic: Google Images)
The disease can lay
dormant in your body and attacks when your immune system is weakened. Treatment is available in Ireland, but consists of a six week
course of antibiotics, which may not always be enough.
Lyme disease causes
flu-like symptoms such as fever, joint pain, headaches, heart-palpitations and
if untreated with anti-biotics it can result in a range of symptoms similar to chronic
fatigue, fibromyalgia, bells-palsy or multiple-sclerosis.
However
according to Dr John
Lambert, a specialist in infectious
diseases at the Mater
Hospital in Dublin said it is ‘a poorly understood disease’ and the
tests provided in Ireland for Lyme disease are often inadequate.
“The Lyme test is often negative, but patients can
still have Lyme. A positive test is helpful to say that the infection is
there, but a negative test’s does not rule it out. Doctors do not seem to
understand this basic principle. There are other infections similar to
Lyme and other strains of the Lyme bacteria that are not picked up, so patients
will get sick following a tick bite, the Lyme test is negative, and they are
told ‘there is nothing wrong’ when indeed the wrong tests were done.
“Doctors debate whether Lyme can cause chronic
infection, and argue over whether to treat with antibiotics for longer periods
of time. Many are told just to treat for two to four weeks and no longer.
But there is good evidence that it requires longer courses of treatment if the
infection has gone chronic, or has been in the system for a long period of
time.
“There is a lack of awareness and a lack of studies
to see how much Lyme we actually have in Ireland. No one
really knows. I think Lyme is on the increase, but also patients are
more vocal now and raising the awareness and not settling for a ‘no’
answer. Patients are going out of the country to get ‘alternative’ Lyme
tests done, which are more sensitive than the antibody tests done here.
“Irish patients travel all over the world so they
may be picking up the infections from tick bites here (Donegal, Sligo, Galway,
Kerry, Wicklow) or they may be bringing them back from the USA, Lanzarote and
so forth.”
48-year old Fiona
Quilter from Sligo contracted Lyme disease more than 8 years ago and is an
advocate and member of the North-West Lyme Group. Fiona had her GP
send blood tests to Germany where clinics specialise in treating patients with
Lyme Disease. Within three days she was diagnosed with the bacterial disease.
Blood tests carried out in Ireland often do not test for
Lyme, and therefore the treatment available across Europe is far more
extensive. Doctors can treat it early once a rash appears after a bite,
they can provide antibiotics that will stop it.
However those suffering with the illness for years are not
treated extensively in Ireland and are forced to travel to Germany and Czech
Republic for intravenous antibiotics, vitamins, light therapy, oxygen therapy
and many more treatments.
“We want doctors in
this country to recognise that this is an illness it is not all in our heads.
We should be treated as citizens in this county and not have to go abroad for
help.” said Fiona.
Miriam Morrison from
Sligo received a tick bite in 2015 but it wasn’t until 2016 that she was
diagnosed. She said the illness has affected every aspect of her life and was
bed-bound due to pain and weakness in her legs.
Avril
Winters from Leitrim has been battling the illness for more than 10 years and
believes the disease has changed her entire life for the worst. What began as
an exciting holiday to Morocco in 2007 ended up changing her life after
receiving a tick bite.
“I got the bull-rash on
my leg where the bite was and I remember thinking, ‘I hope I don’t have this
forever’
“Patients are learning
to treat themselves in Ireland because doctors won’t listen. You get forgotten
about if you don’t look sick. It can get depressing from not being heard and
left to rot. I’ve had doctors treat me for depression when I knew it wasn’t
mental, it was how I was physically feeling” said Avril.
In March 2014,
Barry Cryan started feeling unwell and thought he was coming down with the
common flu. His GP carried out routine tests, including one for Lyme Disease
which all came back normal.
Frustrated with the
outcome and not feeling any better, Barry struggled with the disease for more
than two years and found his memory was beginning to deteriorate. It wasn’t
until he found Fiona’s story on Lyme disease in the local paper that he became
aware of his options.
“I had bloods sent to Germany and
they showed that there was something badly wrong, in fact my immune system was
compared with that which you would expect to see in a patient with HIV.” said
Barry.
After an extensive few weeks of
treatment in the Czech Republic more than 12 months ago, Barry is starting to
feel ‘normal’ again. He believes that Lyme disease is
rapidly increasing in Ireland – within a one mile radius of his home in
Monasteraden County Sligo more than four people suffer from the disease.
“The test for Lyme Disease in Ireland is not
accurate outside of a very small window when you get a tick bite, most doctors
don’t recognise that. Just because you can’t find anything wrong it doesn’t mean
there’s nothing wrong, it just means you’re probably looking in the wrong
place.”
38 year-old Shirley Breslin from Athlone was bitten
by a mosquito in 2010 resulting in a large bulls-eye rash. She wants people to
be aware that while ticks are common with Lyme disease, any blood sucking
insect can carry the bacteria and ultimately affect its host.
After presenting her rash to a doctor they told her
it was a ‘normal skin reaction to a bite’.
“This normal reaction
was a text book bulls-eye rash which is associated with Lyme Disease. Chances
are if I received even one month of antibiotics then, I would not have the
problems I have today. That can be hard to take at times as my world has been
turned upside down.”
Shirley has spent years suffering with insomnia, chronic fatigue, pain in muscles and joints, loss of power,
spasms, twitches and various other side-effects of the disease.
After losing the power of her legs she felt enough was enough
and went in search of an answer.
Shirley eventually went on to receive treatment in the Czech
Republic, she takes various
medication, painkillers, and antibiotics but unfortunately still needs a lot
more treatment due not only to Lyme but the co-infections that accompany it and
the damage it's caused to her body and immune system.
“All patients have
asked for is accurate testing with adequate treatment for an adequate and
appropriate amount of time – It is not a big ask.
“I'm one of the many
who are now Chronic Lyme Disease Patients/Sufferers due to the failure of not
providing a simple service, a basic right that any individual should receive.”
said Shirley
(This article first appeared in the Sligo Champion on May 2nd Edition)
