On Friday night in Mudgee, the Parramatta Eels were lucky enough to meet the lovely Lisa Tubnor. It was a pleasure to have her as our guest at the Eels team dinner at the Mudgee Golf Club, all thanks to the planning of Ken Sutcliffe and Lisa's aunt, Liske Watters.
Below is Lisa's story, written by her aunt Liske, and we hope that Eels fans will take a moment to read and be inspired by how she deals with her Lyme Disease diagnosis, to learn about Lyme Disease, or even send their thoughts out to our loyal Eels fan and her family in the Mid-West.
Lisa is employed by Church Street Vet Hospital as Practice Manager/Head Nurse, however - due to her health - has been unable to work since July 2012.
Lisa has been positively diagnosed with Chronic or end-stage Lyme disease, which basically means that she will have it for life.
We are desperately trying to raise public awareness of this terrible disease as we have found that most people have no idea what it is or how you contract it.
The frustrating part of this is if you are bitten by a tick, any type of tick, they carry the Lyme disease bacteria as well as several other types of bacteria all of which Lisa has, and they are transmitted into your blood stream.
If you can simply be tested by a local doctor and get antibiotics for a 3-week period this is enough to beat the disease before it takes over your body.
Lisa wasnt that lucky, she doesnt remember being bitten by a tick at all. She didnt get the tell-tale bullseye rash that appears after the bite and Lisas Lyme doctor believes she may have had it in her system for over 18 months.
When we look back now Lisa has had several issues with declining health which we now know was due to Lyme.
In June last year (2012) Lisa started getting monster headaches, neck pain, anxiety and nausea which led her on a 5 month diagnostic chase to find out what the hell was wrong with her.
Lisa saw doctors all over the state, had multiple medical tests, months of physiotherapy, spent masses of money funding this chase, multiple trips to specialists, none of which suggested even looking into the possibility of Lyme and on several occasions when Lisa mentioned the possibility she was met with the same phrase that so many other Aussies have encountered: there is no Lyme in Australia.
Lisa has never been out of Australia yet she has a raging positive test result.
Lisa had to source her own Lyme-literate Doctor through a support group in California USA and arrange and fund for her blood to be sent to a lab in America for testing. These blood tests cost between $700 -$1500 depending on what bacteria they are looking for.
Lisa received her test results in November and has been on treatment since. It has been the biggest battle of her life, the pain and mental anguish that this disease presents to an individual and their family is intense and we cannot believe that we have to battle alone.
Every medical professional that we encountered (other than Lyme aware people) either scoffed, look at Lisa as though she were a hypochondriac or refused point blank to offer help and services that were required.
Lisa had been told that she needed to see a psychologist, Lyme is not in Australia and YOU do not have any of the symptoms.
When Lisa researched Lyme on the internet there was a list of about 100 symptoms and Lisa had experienced about 80 of them.
Lisa is unable to work, unable to function normally for a full day, unable to do housework, and unable to drive longer than 15 minutes. As you can imagine, it has been severely debilitating.
Trying to explain to people just why your life has been so affected by a disease they say doesn't exist in this country is a task in itself.
It strips you of your self-confidence and makes you feel very alone and alienated. This disease, if left untreated, can destroy your life, your body and can lead to death.
Lisas current treatment is 30 or more tablets per day (a lot of which Lisa has to buy from America), 4 intramuscular injections weekly, restricted diet, complete rest, massive detoxing blood tests every 4 weeks and a trip to the doctor in Sydney every 4 weeks.
The medication costs hundreds of dollars every month and nothing is supplemented by the government.
Lisa will be on this level of treatment until her symptoms start to disappear; while she will never completely be rid of the bacteria she is hopeful that ongoing treatment and a very healthy diet and low stress lifestyle will mean she can manage it forever.
While Lisa is still very ill, she has been slowly improving with the medication, it can however also cause her to suffer side effects major symptoms include insomnia, mental fog and confusion, fatigue, painful joints, headaches, neck pain, blurry vision, gastro upsets, nausea, sore feet and legs, sore arms, the list goes on.
She is improved though as prior to treatment commencing she had difficulty walking some days, was crippled with pain some days where she was unable to use her hands due to crippling pain, a headache for which you would normally seek a doctor that lasted for 12 weeks without relief, vision problems, anxiety, depression, even loss of mobility in her arms.
Lisas sister, who lives in Nowra, is currently running awareness campaigns, fundraisers and support networks. One of the fundraising events held attracted the President of the Lyme Association of Australia who came to talk about this disease and provide information.
There was a world-wide Lyme protest early in May to raise awareness globally, resulting in the Sydney Opera House and Niagara Falls turning green for a day (just two examples of many sites going green to help raise awareness to Lyme disease).
Below is Lisa's story, written by her aunt Liske, and we hope that Eels fans will take a moment to read and be inspired by how she deals with her Lyme Disease diagnosis, to learn about Lyme Disease, or even send their thoughts out to our loyal Eels fan and her family in the Mid-West.
Lisa Tubnor has lived in the Mudgee area since she was six, and is now 39 years old. Lisa is married with 2 teenage boys and currently lives at Lue.
Lisa is employed by Church Street Vet Hospital as Practice Manager/Head Nurse, however - due to her health - has been unable to work since July 2012.
Lisa has been positively diagnosed with Chronic or end-stage Lyme disease, which basically means that she will have it for life.
We are desperately trying to raise public awareness of this terrible disease as we have found that most people have no idea what it is or how you contract it.
The frustrating part of this is if you are bitten by a tick, any type of tick, they carry the Lyme disease bacteria as well as several other types of bacteria all of which Lisa has, and they are transmitted into your blood stream.
If you can simply be tested by a local doctor and get antibiotics for a 3-week period this is enough to beat the disease before it takes over your body.
Lisa wasnt that lucky, she doesnt remember being bitten by a tick at all. She didnt get the tell-tale bullseye rash that appears after the bite and Lisas Lyme doctor believes she may have had it in her system for over 18 months.
When we look back now Lisa has had several issues with declining health which we now know was due to Lyme.
In June last year (2012) Lisa started getting monster headaches, neck pain, anxiety and nausea which led her on a 5 month diagnostic chase to find out what the hell was wrong with her.
Lisa saw doctors all over the state, had multiple medical tests, months of physiotherapy, spent masses of money funding this chase, multiple trips to specialists, none of which suggested even looking into the possibility of Lyme and on several occasions when Lisa mentioned the possibility she was met with the same phrase that so many other Aussies have encountered: there is no Lyme in Australia.
Lisa has never been out of Australia yet she has a raging positive test result.
Lisa had to source her own Lyme-literate Doctor through a support group in California USA and arrange and fund for her blood to be sent to a lab in America for testing. These blood tests cost between $700 -$1500 depending on what bacteria they are looking for.
Lisa received her test results in November and has been on treatment since. It has been the biggest battle of her life, the pain and mental anguish that this disease presents to an individual and their family is intense and we cannot believe that we have to battle alone.
Every medical professional that we encountered (other than Lyme aware people) either scoffed, look at Lisa as though she were a hypochondriac or refused point blank to offer help and services that were required.
Lisa had been told that she needed to see a psychologist, Lyme is not in Australia and YOU do not have any of the symptoms.
When Lisa researched Lyme on the internet there was a list of about 100 symptoms and Lisa had experienced about 80 of them.
Lisa is unable to work, unable to function normally for a full day, unable to do housework, and unable to drive longer than 15 minutes. As you can imagine, it has been severely debilitating.
Trying to explain to people just why your life has been so affected by a disease they say doesn't exist in this country is a task in itself.
It strips you of your self-confidence and makes you feel very alone and alienated. This disease, if left untreated, can destroy your life, your body and can lead to death.
Lisas current treatment is 30 or more tablets per day (a lot of which Lisa has to buy from America), 4 intramuscular injections weekly, restricted diet, complete rest, massive detoxing blood tests every 4 weeks and a trip to the doctor in Sydney every 4 weeks.
The medication costs hundreds of dollars every month and nothing is supplemented by the government.
Lisa will be on this level of treatment until her symptoms start to disappear; while she will never completely be rid of the bacteria she is hopeful that ongoing treatment and a very healthy diet and low stress lifestyle will mean she can manage it forever.
While Lisa is still very ill, she has been slowly improving with the medication, it can however also cause her to suffer side effects major symptoms include insomnia, mental fog and confusion, fatigue, painful joints, headaches, neck pain, blurry vision, gastro upsets, nausea, sore feet and legs, sore arms, the list goes on.
She is improved though as prior to treatment commencing she had difficulty walking some days, was crippled with pain some days where she was unable to use her hands due to crippling pain, a headache for which you would normally seek a doctor that lasted for 12 weeks without relief, vision problems, anxiety, depression, even loss of mobility in her arms.
Lisa would like every Australian to know her story so that it may prevent or help someone else avoid the pain and suffering that she has endured. We believe there are people out there who have been diagnosed incorrectly and who are suffering still. The Lyme Disease Association of Australia has all the facts and figures and we urge everyone to look it up on the internet and do their research.
Lisas sister, who lives in Nowra, is currently running awareness campaigns, fundraisers and support networks. One of the fundraising events held attracted the President of the Lyme Association of Australia who came to talk about this disease and provide information.
There was a world-wide Lyme protest early in May to raise awareness globally, resulting in the Sydney Opera House and Niagara Falls turning green for a day (just two examples of many sites going green to help raise awareness to Lyme disease).
