We need ACTION FOR LYME DISEASE and this is one way we can help raise awareness by following Dr Mualla's example.
Thank you Dr Mualla Mcmanus.
Dear Lyme crusaders,
I am from Australia. My husband died from Lyme disease complications because the Aust government denies the existence of Lyme disease in Australia. I founded the Karl Mcmanus Foundation for Lyme Disease research and awareness ( www.karlmcmanusfoundation.org.au).
I have contacted the Norwegian, Danish, German Lyme disease associations and we are proposing to contact Sir Bob Geldof to recruit musicians to have a Lyme Aid concert globally.
I was wondering if you could also lobby Bob Geldof to to organise a Lyme Aid concert. We can have a huge global event so that governments take notice of Lyme disease worldwide.
This applies to Africa where the symptoms of Lyme disease is confused with malaria and the medical system don't know anything about Lyme yet
Africa has one of the most lethal strains of Lyme- B. crocidurae. Ticks occur in every continent in the world even in Antarctica. Hence Lyme Borreliosis is a global problem.
Let us all work together as one BODY so we can have the maximum persuasive power in the global sense.
Have Lyme disease legitimised so sufferers can be diagnosed and treated before it becomes chronic.
I am attaching a letter I have written representing Australia.
If you write one representing your State and send it to the email address on the letter for Bob Geldof's agent we can persuade him about the seriousness of Lyme neuroborreliosis.
Please help to spread this message to other associations and then if you have contacts you can recruit rock bands , rock stars to play for this very worthwhile cause, Lyme Borreliosis.
Best regards Dr Mualla McManus
p/s sorry if you get this email twice as I was trying to ensure everyone received it.
9 Jan 2011
Sir Bob Geldof,
Dear Sir Bob:
Re: Lyme disease - the 'leprosy of the 21stcentury'
You have the foresight, the passion and an amazing ability to unite so many musicians and help many urgent and important causes around the world.
I am writing to ask for your help to raise awareness of Lyme disease (borreliosis), one the fastest growing infectious diseases in the world - faster than AIDS in some countries.
Lyme disease can affect any age group - children, adults, the elderly, male or female. It is transmitted by a tick bite and the Lyme disease bacteria (borrelia) are present in every country where there are ticks.
However, many governments ignore/deny this disease, which means sufferers are often unable to access appropriate treatment.
Worse than that, awareness of ticks and this disease is underplayed resulting in unnecessary significant spread .
Even if bitten, an immediate inexpensive short course of antibiotics has shown to be effective in halting the development of this devastating chronic disease, yet ignorance denies this strategy.
Unlike AIDS the onset of symptoms are subtle and overwhelm the patient slowly, so many patients are considered mentally unstable when they try to explain their symptoms., which range from muscle twitches, skin conditions, arthritis, memory loss, depression, paralysis, Parkinson's-like symptoms and other neurological symptoms.
Thus their infection is ignored and further spread unchecked (it is sexually transmitted).
The problem is that each person with Lyme disease can have different set of symptoms, so diagnosis is difficult. Sufferers are often misdiagnosed as having neurodegenerative diseases, such as MS, motor neuron disease, Parkinson's, Alzheimer's and fibromyalgia.
Also, testing is often inadequate in many countries hence confirmation of Lyme is not possible.
Sufferers often have to pay for private testing at overseas labs in order to get a correct serum result and diagnosis.
Statistics on the incidence of Lyme disease are quite poor in most countries, both developed and underdeveloped, including the USA, UK, EU, countries in Asia and Africa.
This is because of difficulties in establishing a correct diagnosis (vague, varied symptoms & inadequate testing) and the denial of Lyme disease existence.
The Centres for Disease Control and Prevention (CDC) in Atlanta USA, consider Lyme disease, the fastest growing vector-borne disease in the USA.
By conservative estimate, the number of new Lyme disease infections per year may be ten times higher than the 45,000 cases reported to the CDC during 2009
In regards to chronicling Lyme disease in Africa, more than 40 published studies have been released.
A 14-year study in the Senegalese village of Dielmo found an average of 11 per cent of the villagers presented with the infection each year.
Also, the researchers from the Institut du Recherche pour le Développement (IRD), who carried out the study are quoted in Afriqu' Echos magazine as saying: “Lyme disease is the most frequent bacterial disease in Africa, but it is also an affliction that is completely unknown to health professionals.” The IRD evaluated a rural African area of Dakar and found that “Lyme borreliosis was the most frequent reason for dispensary consultations after malaria.”
Imagine the complexity now in Africa of untangling the diagnosis and treatment of two diseases Lyme and malaria, both of which have similar symptoms and both presently ravaging in Africa. Healthcare practitioners are not trained to differentiate.
A public health issue Like AIDS, the infected individual can transmit the disease sexually, in utero and via blood transfusion; hence it is a public health issue.
It has the potential to grow exponentially and reach the proportions of an epidemic.
Lyme disease can be a treated successfully when and if it is diagnosed early.
If it is unnoticed and becomes a chronic disease that not only becomes debilitating and sometimes fatal, but costs millions of dollars in health costs to the community.
My personal InvolvementI have become a campaigner for this cause because my husband, Karl, had Lyme disease. He died from the ignorance and neglect by the medical system in July 2010.
It was bad enough being seriously ill, but without help and support from the medical system in Australia, it was the worst hell you could imagine.
Despite my academic background in neuro-pharmacology, immunology and haematology, and my associations with credible institutions (The University of Sydney and Garvan Institute), the supportive scientific international papers for Lyme diagnosis and the positive test results with the international lab Igenex, my husband and I were still ignored.
I have set up the Karl McManus Foundation for Lyme Disease Research & Awareness to www.karlmcmanusfoundation.org.au raise money for research of Lyme in Australia, training of Australian doctors in how to treat Lyme, as well as raising Australian public awareness.
With the guidance of the foundation's directors (professors from relevant fields) I hope to address Lyme disease needs in Australia, but I am acutely aware that Australia is just one of the many countries affected.
This is a worldwide problem.
Urgent help needed
Please help the global community of Lyme disease sufferers bring this awful disease into the spotlight so that its spread is stopped and sufferers can get care and treatment.
There are many Lyme disease organisations in the world that can work together with to raise awareness for this disease.
International Lyme & Associated Diseases Society ( www.ilads.org ),
the UK's Lyme Disease Action ( www.lymediseaseaction.org.uk ),
California Lyme Disease Association ( www.lymedisease.org ),
Canadian Lyme Disease Foundation ( www.canlyme.org ) ,
Norwegian Lyme disease association ( www.lyme.no )
and many more.
The poorer countries of the world don't have any associations to lobby their governments. Most people in poor countries don't even know they have Lyme disease.
We are in the 21stcentury but Lyme disease is considered as an 'untouchable disease'.
It is the leprosy of this century.
If you could please help us to organise a worldwide concert to raise funds for the diagnosis, treatment of Lyme disease (borreliosis), it would save lives and protect our future generations.
It would also get the attention of governments to actually recognise this disease as a serious infection.
Dr Mualla Akinci McManus
Director, Karl McManus Foundation for Lyme Disease Research & Awareness