Tuesday, 9 May 2017

Living with Lyme: The Invisible Illness

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
To find out more and for support group see: Tick Talk Ireland
(This article first appeared in the Sligo Champion on May 2nd Edition)

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