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My name is Eamonn Lawler and I’m a 43 year old civil servant and musician from Carlow, Ireland, married to Marella. In October 2017 I received the devastating diagnosis of ALS (Amyotrophic Lateral Sclerosis), the most common form of Motor Neurone Disease (MND), after a process of tests carried out by the UK National Health Service (NHS).
I decided to set up this GoFundMe page to try and raise £100,000 to fund treatments which will hopefully slow or halt the progression of this terrible disease and improve my quality of life. My condition has gradually deteriorated over the past 12 months and due to reduced mobility I require carer support to assist with daily living and personal care.
ALS sufferers on average live 2-5 years after diagnosis although about 10% survive for longer than 10 years. Disease progression involves the gradual loss of muscle use throughout the body, with death commonly resulting from respiratory failure. To learn more visit the Irish MND Association or the UK MND Association webpages.
After diagnosis I was referred to local palliative care services for support with management of what medical professionals said would be my inevitable decline. As things stand there is no conclusive agreement within medical science around what causes MND and the most commonly recommended treatment is a drug which at best only delays symptom progression by a matter of months.
I’m not the type to accept what is essentially a death sentence without a fight. I was also convinced I had not displayed the typical quick onset of ALS (unexplained muscle twitching or fasciculations, insomnia and daytime fatigue since age 13). So I began to research potential causes for my symptoms. Chronic Lyme Disease (CLD) consistently presented itself as the most credible candidate.
Lyme disease is usually spread by tick or insect bites (of which I have had many over the years) and if left untreated over a long period can cause a range of chronic problems which Lyme experts claim can mimic the symptoms of illnesses such as ALS, Multiple Sclerosis (MS), Myalgic Encephalomyelitis (ME) and a host of other diseases. This is the subject of heated debate within the medical community and publicly funded testing and expertise in Ireland and the UK is woefully inadequate so sufferers are forced to seek help abroad. To learn more about what Lyme sufferers are going through check out lymediseaseuk.com and the Lyme Chat - Eire and Tick Talk Ireland facebook support groups.
In January 2018 I went to see arguably one of the best known experts on Lyme disease in Europe, Dr. Walter Berghoff, based near Cologne, Germany who carried out an extensive review of my case and fresh tests. Specialised blood tests come back positive for active Lyme infection and a cardiac MRI identified myocarditis, which UpdateDr. Berghoff advised is a classic symptom of Lyme bacterial infection. Further blood tests from another German laboratory had already revealed at least six active viral co-infections suppressing my immune system which are also a side-effect of Lyme infection. While Dr. Berghoff did not rule out the possibility of ALS, his probable diagnosis was Stage 3 (advanced) Lyme Neuroborreliosis (a neurological version of Lyme disease).
In April 2018 I returned to Ireland from the UK to commence a home-based antibiotic treatment protocol facilitated by the generous support of family, my employer and friends. Although this treatment delivered some temporary improvement, I believe I now require intensive inpatient treatment at a specialist clinic with the capacity to deal with the complex mix of problems involving Lyme bacterial infection, the full range of viral co-infections and a severely compromised immune system.
I have identified a clinic in Germany with this type of expertise who have reviewed my case and are willing to treat me. Whatever route I decide to take I will need considerable financial support to help me fund the initial and follow up treatment phases. I am asking for your help with reaching this goal. In the process you will help me raise awareness about the need for greatly improved testing and treatment of chronic Lyme disease and co-infections in Ireland and the UK!
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