Welcome to our first Newsletter of 2013. A lot has been going on behind the scenes. Please take a moment to read through this Newletter to learn more - Karl McManus Foundation.
University of Sydney Blood Collection
Last month we advertised the research of the Tick-borne Diseases Unit of the Discipline of Pharmacology of the University of Sydney. The aim of the study is to determine which pathogens are associated with Australian Lyme disease patients.
I know many people have contacted the Unit keen to participate in the study.
The University is working to finalise quotes and contracts to transport blood from QLD, WA, SA, VIC, TAS and Regional NSW. As such, initial blood collection has only been possible at the University Laboratory.
Hopefully by now, all QLD and WA participants will have received an email with information about their blood collection.
At the time of writing, we are still waiting for SA, VIC, TAS and Regional NSW blood transport arrangements to come through.
On behalf of the University of Sydney and KMF, thank you for the overwhelming response to the call for participants.
Lyme Disease – The Great Imitator
Lyme Disease is often referred to as the Great Imitator for its ability to look like many other illnesses, often leading to a misdiagnosis. These include:
- Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
- Motor Neuron Disease
- Parkinson’s Disease
- Rheumatoid Arthritis
- Multiple Sclerosis
- Alzheimer’s Disease
To highlight the extent to which Lyme disease can imitate another illness, each issue we will feature the personal story of someone with Lyme disease that has been mistaken for something else, sometimes for decades.
This issue we’re starting things off with my story. I hope you find it interesting and perhaps even helpful.
Up Close and Personal with Karen Gainey
My story starts in Newcastle, NSW 21 years ago when a tick bit me. At the time, I was studying Nutrition and Dietetics at the University of Newcastle and ironically, Professor Tim Roberts was my Immunology Professor that year. My first symptom appeared at the 21st Birthday part of one of my friends.
Four years and many doctors later I was given a diagnosis of Fibromyalgia. I was told that one day I would end up in a wheelchair so the sooner I got used to that idea, the better. I was 25 and decided to not get used to the idea. I worked with severe pain, fatigue and sleep problems for many years until I had to leave work in 2008 to go on a Disability Support Pension.
Late 2011 one of my friends mentioned hearing Dr Mualla McManus on the radio talking about Lyme disease on the Central Coast of NSW. I had no idea what Lyme disease was at the time. When I heard the symptoms were so similar to Fibromyalgia and that it could be caused by a tick bite, I remembered being bitten all those years ago and wondered if it was possible I had Lyme Disease. I found a Lyme Literate Medical Doctor, got a positive blood test from a US company and now I'm 12 months into treatment.
At the age of 40, Lyme disease has taken 50% of my life. I may never be able to have children. I may just run out of time before I get well enough to be able to have a family. Even if I could have one now the risk is too great because of the potential of passing the disease onto them through the placenta.
Still. I am one of the lucky ones. I'm on the way to getting better. For the past 2-3 months I've started to feel an improvement and feel hopeful for the first time in 21 years.
Senator Xenophon goes Under the Microscope
Independent South Australian Senator Nick Xenophon was initially elected to the Senate on the “No Pokies” ticket in 2007 however since then his political interests have broadened to include:
- Climate Change
- Product Dumping
- Food Labeling
- Online and Sports Betting
- Selling the Farm
- Supermarket Competition
- Water Security
Since 2009 Senator Xenophon has also publically criticised the Church of Scientology, a Catholic priest in SA, live cattle imports and plans to address the issue of palm oil importation into Australia before the next Federal election.
As you can see, Senator Xenophon is not afraid to speak out about issues that might prove to be unpopular, if he feels strongly about them and their importance to Australia as a Nation.
For this reason, he may prove to be sympathetic to current situation of Tick Borne Disease in Australia. His position is perhaps best summed up by the following quote:
“I believe the most important part of my job is speaking up for people who might not otherwise have a voice."
As a group, we certainly need a larger and stronger voice if we are to have chance of influencing the people in positions of power in the Australian Government.
I realise many of you have written endless letters to local, state and federal members of Parliament without much success. In Senator Xenophon however I believe we have a better than average chance of getting a positive response. This is a man who has expressed his outrage over the dealings of various organisations for the past 5 years and it sees no one is off limits. Our stories are nothing short of outrageous.
If you are able to write any letter to anyone at all, can I suggest you send it to Senator Nick Xenophon? What would it be like if we could bombard his office with our stories and bad experiences over the next couple of weeks? Perhaps this is a man who will take notice of us. What better timing than leading up to the next election?
To help make things easier here is a pro forma letter for everyone to use and edit as you see fit.
Remember, if this feels overwhelming, many of you have already shared your stories on Facebook or in some other way, so you’re not starting from scratch. Perhaps you already have written something out to give to your doctors that you can use.
Pro-forma Letter to Senator Xenophon
Senator Nick Xenophon (Your Name)
Level 2 (Your Address)
31 Ebenezer Place
Adelaide 5000 (City & postcode)
South Australia (State)
Dear Senator Xenophon,
I am writing to you about Lyme-like or Lyme Disease. It is a disease spread through the bites of infected ticks and others arthropods (insects) such as mosquitoes, fleas and lice.
There is a Lyme like disease in Australia (acknowledged by NSW Health) and increasing number of people are presenting with symptoms of this Lyme like illness. The Australian Government however is not investigating the potential causative agent. More and more people are presenting with this illness and the current culture in hospitals and amongst most doctors is to deny the existence of Lyme Disease or a Lyme like disease in Australia.
Lyme Disease has been referred to as ‘The Great Imitator’ in humans, as it can manifest itself in numerous muscular skeletal and neurological symptoms. Due to the lack of awareness and education of medical professionals, Lyme Disease is often misdiagnosed as Arthritis, Multiple Sclerosis, Fibromyalgia, Chronic Fatigue Syndrome, Autism, Alzheimer’s Disease, Motor Neuron Disease (ALS), Parkinson’s Disease, Depression and many more.
Patients have been turned away from hospitals and even diagnosed with conversion disorders when they have positive test results from overseas laboratories that are accredited in their country for Borrelia (the organism that causes Lyme Disease). Doctors in hospitals want to use the laboratories that are NATA (National Association of Testing Laboratories, Australia) accredited however this is only possibly for Australian laboratories as NATA is an Australian accreditation.
The current position of the Australian Health Department regarding Lyme Disease is based on a single study conducted over 17 years ago by R. Russell and colleagues from the Department of Medical Entomology at Westmead Hospital, Sydney.
Unfortunately for sufferers of Lyme disease, this study showed that only a little over 2% of the patients tested were positive for Lyme disease and less than 1% were positive based on the criteria used by the Centres for Disease Control (CDC USA).
Why then are Australian people still insisting in 2013 that Lyme Disease is a problem in Australia? Here are some answers to this question:
- A Lyme Disease diagnosis is a clinical diagnosis conducted by trained medical professionals, not based on a laboratory test alone (ref: CDC website)
- The CDC USA criteria (which has been adopted by Australia) is suitable only for surveillance only, not for clinical diagnosis.
- Laboratory testing has a number of problems, one of which is strain variations. Despite these well-known strain differences, the first line of testing used in the study involved the American strain of bacteria B. borgdorferi sensu stricto.
On 14 September 2012 the first Australian Lyme Disease protest rally was held outside the offices of NSW Health in North Sydney. This was followed a similar rally on 23rd November 2012 in Brisbane outside the Queensland Health office in Brisbane. A total of approximately 230 patients and supporters attended the rallies. Many sufferers were too ill to voice their support for change.
Australia is not alone in its fight for recognition and support from its government in testing for and treating Lyme Disease. On May 10th and 11th 2013 there will be a Worldwide Protest Rally with 18 countries committed to attending at the time of writing. People from 18 countries all protesting on the same day(s) for the same thing.
The position of Prime Minister Gillard and the health minister, Tanya Pilbersek is that of the Australian Government; they do not believe that Lyme disease exists in Australia. We need courageous politicians willing to stand up for the underdog to fight for us in creating awareness for this life threatening disease.
Your campaign history and willingness to speak out about contentious issues such as the Church of Scientology, the behaviour of Catholic priests and live cattle imports proves you are not one to back down from a fight even if the odds don’t seem to be in your favour.
With your help, we have a real chance of creating change for the thousands of silent Australians affected by this disease.
For more information, please see the links I have included below.
Useful links and references
1. Karl McManus Foundation – http://www.karlmcmanusfoundation.org.au/
2. The Lyme Disease Association of Australia – http://lymedisease.org.au/
3. Lyme Australia: Recognition and Awareness – http://www.lymeaustralia.com/index.html
4. Further background and details on the study by Russell and colleagues at Westmead Hospital – http://www.lymeaustralia.com/health-dept-denial.html
This letter was written with thanks to ideas from letters previously written and made available by David Stevens and Fiona Keen.
Volunteer Activities – Bunnings BBQ Belrose
The Sydney suburb of Belrose found some beautiful summer weather for Bunnings BBQ on Saturday 9 February.
A tireless group of volunteers chatted to loads of interested people about Lyme disease, filling their minds with information, their hands with pamphlets and their stomachs with sausage sandwiches.
All up, a total of $2452.50 was raised for the Karl McManus Foundation.
As you can see from the photos, the volunteers managed to have a great time helping others, despite how they were likely to be feeling at the time.
A huge thank you goes to Rhonda Carney, Danielle Ryan, Mal Pace, Heidi Adams, Janette McNamee, Sharon and Alex Pritchard, Elizabeth Bopa, Gabriella Stevens, Tara Stevens, Bear, Scot, Fred, Mark and Barb Jentz, Chris, Kate and Nick, Gabriella V. Special thanks go to Tom’s Kiosk in Concord for donating the drinks and Sage Coffee Shops in Central Coast for napkins. A super, super thanks go to Anney Cincotta and Ann Mitrovic for angelic work, dedication and commitment for the cause.
We’ve got another one planned in 6 months time so make sure you get plenty of rest between now and then.
Walk Aware is an Awareness Walk aimed at raising awareness and getting answers for Lyme Disease and other Tick Borne Diseases.
Please support Michelle and Steve as they walk through Melbourne in April 2013 raising money for much needed research into these conditions. They will be asking the Australian public to donate to the Karl McManus Foundation during this event and are currently looking into getting t-shirts printed.
Each day they will walk around 20 - 22kms, which they expect to them about 5 - 5 1/2 hrs. Michelle was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia, however suspecting a tick borne illness to be the cause of her symptoms, she started antibiotic treatment in October 2012 and has had positive results so far. Prior to Michelle getting sick, both she and Steve were very active, particular in the outdoors.
We wish them great weather for their Walk and plenty of support from the Melbourne locals. The Karl McManus Foundation is grateful for their efforts in raising money for Lyme Disease research.
For more information on Walk Aware, please visit the Facebook page http://www.facebook.com/WALKAWARE
Reminder about the 1st International Tick Borne Diseases Conference on 15-17 March 2013 at the Kerry Packer Centre. Patients can register as students to hear overseas specialists discuss the treatment of Tick Borne Diseases. Please go to www.karlmcmanusfoundation.org.au to register.
Book Review - Insights into Lyme disease Treatment
This is a useful book for anyone with Lyme disease however I would particularly recommend this book for people who have been newly diagnosed.
There are 13 chapters, each one written by an expert Lyme literate health professional. Each one shares their years of experience in treating people with Lyme disease and outline which strategies have been the most effective for them.
This book covers so many essential topics including the treatment / healing philosophies and approaches of each author, antibiotic use, co-infections, detoxification, exercise, diet, immune system support, herbal treatments and barriers to healing.
Go to http://www.lymebook.com/ to purchase this book in hard version or as an eBook.
The Karl McManus Foundation