Community rally behind young Galwaywoman’s battle with Lyme disease

Nicola Lavin — bitten by a tick in the US in 2000.

Nicola Lavin — bitten by a tick in the US in 2000.

A fundraising initiative to enable a Galway woman suffering with Lyme disease to access stem cell therapy is gathering pace.

Students at Nicola Lavin’s (née Glynn ) former school, Salerno Secondary School, have raised €3,200 toward the €23,000 campaign to fund her treatment in Germany.

Last week, the HSE issued a warning regarding Lyme disease which is a vector borne disease.

About 10-20 cases of neuroborreliosis are notified in Ireland each year, but estimates put the figure much higher, at 100-200 with chronic cases.

Symptoms vary from relatively mild, to much more serious complications involving the nervous system, joints, the heart or other organs.

Nicola Lavin can trace her disease back to 2000, when she was travelling in the US and bitten by a tick.

However, her symptoms which included heart failure and led to debilitating fatigue and muscle weakness, were attributed by doctors on her return to Ireland as pregnancy related.

After the birth of her son, as her condition still deteriorated and she had to give up work, doctors gave ME as the diagnosis.

For years she believed she had ME (Myalgic Encephalomyelites/Chronic fatigue Syndrome ), and threw herself behind fundraising for that disease, helping to raise over €2 million.

It was only in 2015 that a simple blood test, carried out by a lab in Germany, finally gave an accurate diagnosis of Lyme disease.

Ms Lavin now needs to go to Germany to avail of stem cell treatments as her condition has remained untreated for so long, the usual therapies for Lyme disease are having no impact.

“Nicola is such a fighter, and for years worked to raise awareness of ME and that cause. Now she needed our help,” said Emma Goode, a friend of Nicola’s and a former Salerno student. “Sr Angela Maughan, who taught us in Salerno and still works as the school chaplain, organised cake sales both in Salthill Church and the school itself. It is a testament to Salerno’s community spirit that alumnae, current and retired teachers, and students rallied round and pulled together to help one of their own.”

Ms Lavin whose day to day existence is one of pain, mostly bedbound and unable to leave the house for any great period of time, hopes the treatment in Germany will turn her health around.

“I am so grateful for the support that Salerno has shown me. Being mostly housebound you begin to feel very isolated with this illness. For the community to come together like that to support a past pupil shows the wonderful ethos of that school. Lyme has slowly taken away any quality of life that I had. I am a shell of the person that I used to be.

“With tick season approaching I want to remind the public to be vigilant, especially hikers, walkers, fishermen, or even children simply playing with their pets or in the back garden. Use DEET insect repellent if spending time outdoors. Check yourself regularly for ticks. Remember that they can be the size of a poppy seed and should you find one only remove it safely using a tick twister (available in most pharmacies ). Never pull it out as this is when it regurgitates its stomach contents containing the bacteria back into you. If you are concerned you can freeze the tick for testing at a later stage. Most importantly if you become unwell or notice a bullseye rash after an insect bite, and suffer flu like symptoms or unrelenting fatigue please see a GP and inform him/her of the bite.

“Less than half of those bitten will develop the telltale rash so bite history is important to remember. The sooner you tackle lyme and accompanying infections the more likely you will recover. My body has been severely damaged over the 16 years undiagnosed and untreated but finally I have confidence in a treatment that will help to restore that damage and with this treatment I am positive for my future.”

A gofundme page has been set up to help Ms Lavin reach her goal of €23,000 to avail of life changing treatment in Germany: https://www.gofundme.com/fightlymesnicolalavin.

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