Queensland Lyme Disease Protest November 23rd 2012

20/11/2012

This page is a place where people can register their support for the Lyme disease Awareness Protest in Queensland on the 23rd of November 2012. Comments are welcome from those who able to attend, those that wish to tell their "lyme story", as well as all those offering their support for the Recognition and Treatment of Lyme disease - not just in Queensland, but the whole of Australia - and indeed a call for more Research Worldwide!!

19 Comments

Greg Jervis

19/11/2012 21:33:31

Hi,
While I'm not suffering with the debilitating symptoms most people with Lyme do, I feel I know just what it is like. My wife has been undiagnosed for many years, leaving her with chronic neurological Lyme. To see someone you love suffer with so much, is heart breaking to say the least. To be told by Doctors that it all in your head, is a crime. Lyme is very much real, and very much here in Australia. Help is needed with diagnosing Lyme in Australia, but more important, help is urgently needed in treating the people with Lyme. Australia, the so called lucky country, but if you have Lyme, it's Australia, the head in the sand country!

Karin Floate

19/11/2012 22:01:42

Hi
I would like to add my support to the Brisbane protest.Unfortunately I will not be able to attend as I live in Sydney, and was too sick to attend the Sydney protest.
I was bitten by a tick at Mapleton S.E.Qld in September 2008 and have been sick ever since.
I hope the protest is a roaring success, and that you are able to get the Queensland Government to admit that there is a huge problem and to take action by recognising that Lyme is a hidden epidemic in Australia.

Sharon

19/11/2012 23:27:44

Hi there, my heartfelt support to this protest. The Australian medical attitude towards Lyme is criminal and negligent. Even people infected overseas can be rejected, bullied and denied medical support here. That's outrageous, unjust and immoral.
I got sick in 2002, misdiagnosed and bounced from one ignorant specialist to another... Luckily someone gave me information, I sent my blood to the US, got a diagnosis myself and then started my own treatment naturally. It was almost 8 years before I found a Dr willing to help... Shame on them and I so feel for the many very sick Lyme sufferers...

Judy Frizzell

20/11/2012 03:08:52

It is so good to know that there are people well enough to represent those who are not well enough to attend. I know some of you will be risking severe rebound symptoms or payback by being there in person (and not having a bed to lie on) so let us hope that this attempt to make our voices heard is well and truly worth it. Thank you participants and "Go the green".

Dr Ivan Hooper

20/11/2012 23:27:36

I cant be there, but I am working away here in rural Victoria, talking and promoting the cause.
I am aware that Inflammation Therapy has helped a number of people.
https://chronicillnessrecovery.org/
Best wishes to all

Deb

22/11/2012 02:02:27

Great to see a Dr supporting. Also I haven't heard of this treatment you mention so will be onto doing some research when possible thanks Dr Ivan Hooper

Janice Foster

21/11/2012 01:52:23

Just wanted to express my support for this protest, and agree with all the comments above.

The negligence of our government - and governments worldwide - in regard to Lyme Disease is not only bewildering and absolutely frustrating, but also incredibly dangerous; 'criminal' is certainly not too strong a word.

As a NSW resident, I won't be able to attend, but assure you I'll be there in spirit, and am glad that the organisers are willing to represent non-attendees by reading out their names.

I attended the Sydney protest, and will attend as many more protests as I can - some things cannot be tolerated, and the (lack of) treatment of Lyme sufferers is one of them.

Good luck QLDers, in being heard!

Lesley McLeod link

21/11/2012 04:13:59

My Story .. I was born in 1964

I was only 19 when I became ill.

Doctors told me I was not physically ill. I am now 48.

This year I was diagnosed with Rickettsia, Tick Typhus, Lyme Disease & multiple Co infections.

Not one Australian Doctor in 28 years had enough training to Clinically Diagnose Lyme Disease or even recognise the Classic Co infections as a warning of Lyme Disease.

Instead I have lost everything!

Can you imagine what you would feel like if I took the last 28 years of your life?

If I took from you everything you have gained both professionally and financially and replaced it with a disease that is known to the medical community – but denied any recognition & treatment.

And how would you feel if each time you tried to get help, you were told it was all in your head, or you are a hypochondriac or depressed, all the while suffering a life threatening disease like Lyme Disease?

The situation is surreal and terrifying at the same time.

Doctors casually dismissing you as a waste of their time, all the while you are slowly dying.

It changes your perception of the health system offered in Australia.

It is selective.

It seems that some Australians are more worthy than others when it comes to the provision of Health Care!

Even children & toddlers struggling to survive Lyme Disease are turned away from Australian Hospitals without Medical Treatment.

Adults who are diagnosed overseas are denied their treatment protocol by Australian Doctors and Health Services. Why??

Look up how serious Lyme Disease is and ask yourself. What will you do if the flea on your dog or cat is the unlucky one that is carrying Lyme into your family home?

What would you expect your Government to do about it? What would you expect your local GP to say to you and your loved ones?

It is one thing to become disabled at the hands of a Disease but for Australians with Lyme Disease their disability is the direct result of the Governments inaction.

If Lyme Disease is diagnosed quickly and early, a lifetime of disability and suffering and premature deaths could be avoided.

The Australian Public need to know how to safeguard their families from Tick borne diseases & Australian Doctors need to be educated on how to clinically recognise / diagnose Lyme Disease & the importance of early medical intervention.

The Karl McManus Foundation & the Lyme Disease Association of Australia are working to assist Sufferers and the General Public with this Public Health Threat.
Where is the provision of Government funding for Lyme Disease?

The Australian Government may not be taking Lyme Seriously but our families need to know how to help themselves!

With the rapid urbanisation of our natural bushland areas here on the Sunshine Coast, tick nests are being disturbed.

We have kangaroo’s travelling many kilometres through bushland to rest and feed at our local University.

We encourage into our backyards passing Galahs and other ground foraging Fauna - because we care about the diminishing natural wetlands and their diminishing food stores.

All this brings the wild native aspects of our wonderful country right up to our doorsteps and along with them the diseases that any untreated wild animal would carry.

Lyme Disease is one of the world’s fastest growing vector borne diseases and it is time that Australian Health Bodies embraced the need for Treatment & Care of those infected.

* Is it right for those in positions of power in Australia to leave people sick & suffering when treatments could easily be made available?

Maureen Seaward

21/11/2012 06:35:43

I would just like to wish everybody luck for the protest.

I have Lyme Disease and was bitten 3 years ago when i travelled from Brisbane to Sydney.

As I live in New Zealand I am unable to attend but my thoughts are with you all and i hope you get a great response.

This is a horrible Disease to have and then to be told by many Doctors you dont have it is so wrong.

I would never wish this on my worst enemy but I would love for one of the Doctors or Govement who deny it excists to walk in my shoes for a day. I bet they would quickly change their mind and give us all the humaine care that we deserve

Debra Sutton-Smith

22/11/2012 02:27:49

I have had Lyme disease for about 2 1/2 years now after being bitten by a tick doing my gardening in a suburban block on the Gold Coast. You don't have to be out in the bush to get ticks. Because I wasn't aware of Lyme disease I didn't seek treatment after seeing the tick on me after showering later that day. If I had known then what I know now through the info provided through the Karl McManus foundation I could have been saved this misery and extreme pain by having antibiotic treatment straight away. I stumbled upon Lyme disease by spotting a picture of a bullseye rash some people get after a tick bite that I did get. This was 6 months after the bite and the flu like illness I kept getting every 3 to 4 weeks, then armed with this info and pleased that I had found what was wrong my gp told me Lyme didn't exist inAustralia. I sent my blood overseas as we don't even have competent testing available here. I came back positive without a doubt to Lyme , then the expensive treating begins. The finding of a Lyme literate doctor that knows how and will treat you, these dr's are few and far between. I have only started treatment earlier this year and as for all of us have at least a 2 year treatment plan ahead. This treatment can often make you feel even worse. We desperately need to spread awareness so people don't need to go through this. We need better testing available here in Australia and we need Dr's that know how to treat us and a treating facility for some that are so weak they need hospitalisation to get through the treatment. Please listen , take note, and help is where you can. Lyme is here and it's spreading daily. We need the health dept to acknowledge and help now

Sue McFarlane

22/11/2012 12:49:54

I am unable to attend the protest, because I live in Melbourne.
However, my wish is that someone from the Government, will take the time to listen to what this protest is about.
I also ask, that any medical person(s), please do some research into this disease.
My husband and I, both suffer from Lymes disease, and the most difficult thing with this disease, is getting treatment.
If it wasn't for our family, friends, and support group, I really believe one of us would have had a breakdown.
I don't think it is right, that anyone should have to endure this disease, without proper medical care, and many do.
Every person in this country can get treatment for any other disease, why is it so hard to be treated for Lymes disease.
I just don't understand.

Fiona Keen link

22/11/2012 23:01:09

Our journey with Lyme began seven years ago when my partner Len was bitten by a paralysis tick in a State Forest near Maryborough, Queensland. In the years following the tick bite Len suffered numerous illnesses but not once did any of the medical profession suggest the possibility of him having Lyme.

It was only after watching a television program about people suffering Lyme disease here in Australia, that made us think that it was a real possibility that Len had Lyme.

The difficulty for us at this stage was to find a GP who would guide us on an effective treatment plan. Sounds simple but, it wasn't! Unfortunately, it was denied by the doctor that Lyme exists in Australia and any hope of having testing done, let alone treatment was clearly something that was not going to happen.

Luckily, for us we did eventually find a treating Lyme literate doctor who did run tests and found that Len was positive for Lyme. Thanks to him I also had testing done some months later and it was also confirmed that I too have Lyme. My worst fear now is that my twins may also have this insidious disease.

The television shows, newspaper articles and the protests being held are to create awareness and educate the public. The medical profession must acknowledge that Lyme is here and sufferers must be treated effectively and with dignity and respect.

I hope today that QLD Health will see the light and accept the fact the Lyme is here.

Good luck to everyone who is attending the protest today. Make a noise and change the future for all Lyme sufferers.

Tammy Petrov

23/11/2012 00:40:46

wishing all you Lymies the best outcomes for the protest in QLD.
I pray that the QLD health minister is someone who can get the system change for Lyme Disease.

I live in Sydney and too sick to travel.......
I was bitten in QLD in 1975 in the glass hill mountains, when i was 5yrs old. Also bitten in newcastle n blue mountains in 1990's.

Only diagnosed this Sept but suffering with this horriffic illness most my life. Chronically ill since giving birth to my kids.

I have lost my business and my kids have a home bound, bed ridden mum. We need the ignorance to stop. Lyme is here and has been for decades........how many lives need to be lost from this illness before our health dept will act.

Lyme disease needs more media awareness.

Jill Marley

23/11/2012 22:57:32

Even this morning I am completely overwhelmed by a blanket of emotional pain for these people. Why on earth is this happening in Australia? I spoke to many people at the Brisbane protest who were steps ahead of my daughter in their treatment so they were able to advise us which way to go much more effectively than the many doctors in her seven year journey for a diagnosis. The young GP who treats some of them attended the protest rally and spoke and there was another GP standing there representing her patient. A long list of sufferers was read out. I felt the heavy weight of knowing my daughter was on this list. I’m deeply moved by the experience of the Brisbane protest rally yesterday and sincerely thank the organisers of this event, properly organised in a dignified manner to achieve much needed recognition. Well done!

Sue Raven

24/11/2012 12:59:10

I have a good friend suffering from Lyme it bascially robs people of their lives and hubby who may have it yet to be confimed.
I was at the protest yesterday and it is very sad to see all these people suffering and for it not to be reconised in Australia is outrages.

Timtam link

25/11/2012 13:31:21

A decade before LYME diagnosis in 2009 and LLMD. recommended treatment plan to my Australian GP. Disabled by 21, Hospitalised almost died at 19 when I had disseminated lyme rashes and arthritis fever pneumoniaand babesia symptoms plus low b12 pots and severe anemia wt loss and heart rate at 120 rest to 160 walking. Diagnosed autoimmune and treated as such. Opposite to my current lyme treatment which has mad me feel like a teenager again but now I am 30. What led to all this...
Bitten at 16 nth Townsville at Cardwell Ranges, bullseye rash over 25cm dia developed over next month. Dr gives 2 wks ABX, followed by a glandular illness bedriden for wks.

2yrs CFS undiagnosed but could attend studies only with adhd and sleeppng more and moe even second row physics lecture.

May

19/9/2013 16:35:31

Bitten by a tick in qld....had a rash and have many symptoms.Doctors say Lyme is not in Australia. No tests, nothing.
And how can they turn away children and babies with suspected tickbites from hospitals? That's criminal.What a crazy world we live in

Wendy Saunders

5/2/2015 03:58:50

Hi how do you get tested for Lymes disease my son has been ill since he was in the Tully jungle here in far NQ we live in Townsville he was serving the army and has been very sick since contracting Leptospirosis,Ross River fever,Rickitsial,Parasites and is still very ill he shows signs of Lymes Disease please let me know where he can be tested im desperate..

Karen Smith

5/2/2015 05:17:03

Hi Wendy - If you contact the Lyme Disease Association of Australia - they can send you a test kit for IGenex.

I believe that Sullivan Nicolaides is now testing for more than one species of Lyme / Borrelia ...

I am in Macky - not far from Townsville - and I know of a few people that way - If you send me an email to < lymeaustralia@live.com.au > I can give you some ways to connect with other people ... Alternatively - connect with me on facebook at : https://www.facebook.com/pages/Lyme-Australia-Recognition-Awareness/134506933379413

All the best - regards Karen .

Queensland Lyme Disease Protest November 23rd 2012

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