Within a few weeks I was seeing a neurologist and was also admitted to hospital shortly thereafter. After five days of extensive tests, I was diagnosed with MND, Bulbar Onset. This diagnosis was confirmed by two other neurologists over the following weeks.Back in March 2009, I was diagnosed with MND (Motor Neurone Disease), Bulbar Onset. Now in November 2010, I am heavily fatigued and find it difficult to walk too far or stand for too long. My speech is permanently slurred, I have a PEG feeding tube inserted into my stomach and I have to sleep with a ventilator.
My diagnosis of Lyme disease has only transpired in the past few weeks after I made contact with a Lyme-aware doctor. MND is regarded as a terminal illness, without any hope. So my subsequent diagnosis of Lyme disease does bring new hope, as it is treatable. My research tells me though that it can be a hard road to recovery – but it may be a road too hard for me to survive, due to my extremely weak condition and current low lung capacity (FVC).
Six months ago, I was made aware of a link between some MND cases and Lyme disease by a website in the USA. But when I looked into it, official reports in Australia told me that Lyme disease doesn't exist in this country.
So I wrote the idea off of me having Lyme –
THAT WAS A BIG MISTAKE
If I had not been misled by that information back in May 2010, I would had found out then of my Lyme infection and would had been in a far stronger state of health to cope with my pending treatment. So from this point looking forward, even a partial recovery is a daunting prospect for me due to my fragile condition.
My hope is that not only will I in time begin to recover, but that the presence of Lyme in Australia be officially recognised so that many more will not have to suffer as I and so many others have unnecessarily.
- Brendan, Rural Victoria
Sadly Brendan passed away in August 2011. Our thoughts are with his friends and family.
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