Download about Lyme Disease in Australia - Lyme Disease Association of

Lyme Disease Association of
Australia
Together we can fight Lyme Disease and win
FREQUENTLY ASKED QUESTIONS ABOUT LYME DISEASE!.
Throughout this leaflet you will find reference to IDSA, ILADS and LDAA. To avoid confusion, they
refer to:
•
•
•
ILADS – International Lyme and Associated Diseases Society
LDAA – Lyme Disease Association of Australia
IDSA – Infectious Diseases Society of America .
Can I get Lyme Disease from sitting next to someone? No you can not get Lyme Disease that
way.
How do you get Lyme Disease? Most people get Lyme Disease from the bite of an infected tick
(even if they don’t remember the bite). Some children have contracted Lyme Disease from their
mothers being infected with active Lyme Disease at the time of their pregnancy or through breast
feeding. Very rarely Lyme Disease can be contracted sexually (note, this is a controversial diagnosis,
even in the Lyme Disease Community – there is ongoing research being done in this area).
What is the treatment for Lyme Disease? The treatment for Lyme Disease is tailored to each
individual and their symptoms, medical history and situation. For early stage Lyme Disease
antibiotics are given for a number of months. For late stage Lyme Disease, commonly antibiotics are
used at high doses and for lengthy periods of time in order to combat the infection. It is essential if
you are taking antibiotics that you also take a good probiotic, 2 hours after taking antibiotics — this is
to enable the gut to repopulate with good flora which fights a possible fatal infection called
Clostridium Difficile (c.diff) which is a possible side effect of antibiotics. Many people with Lyme
Disease in Australia combine antibiotics and complementary medicine such as herbs and
supplements. Note – no matter what treatment you choose, it is vital that you find a Dr or
Naturopath experienced in treating Lyme Disease to treat you. Although it may seem easier at times
to “self treat”, the treatments for Lyme Disease can have side effects, and if left untreated (or undertreated) it can be fatal.
How do I get treatment in Australia? There are a number of doctors and naturopaths in
Australia treating people for Lyme Disease (please contact us for suggestions of recommended Lyme
Literate practitioners).
▪ Some Doctors mistakenly believe that there is no such thing as Lyme Disease in Australia, and
refuse to treat people with Lyme Disease – many of these are infectious diseases doctors who
follow the guidelines of the IDSA in America (please see the question Are there controversies
www.lymedisease.org.au with Lyme Disease? below for more information).
▪ Other doctors are willing to diagnose Lyme Disease, but are unwilling or unable to treat it. The
vast bulk of experience in treating Lyme Disease is with Lyme Disease specialists in the USA
(because of the endemic nature of Lyme Disease in the USA).
▪ There is one Lyme Disease Specialist (a Naturopatic Doctor) who travels from the USA to Australia
twice a year to meet with patients that she treats the rest of the year by phone – many
members of the LDAA have found this works very well in conjunction with working with their
local friendly GP, whilst other members have found working with doctors and naturopaths in
Australia has worked well for them as well.
▪ One place to start with your local GP is by reading the Burascano Guidelines from the International
Lyme and Associated Diseases Society.
What is an LLMD? LLMD stands for Lyme Literate Medical Doctor, and has become a shorthand
way of saying that this doctor or naturopath is aware of Lyme disease and usually has had some
experience in treating patients with Lyme Disease. It has also come to mean doctors that align
themselves with the ILADS diagnosis and treatment of Lyme Disease (see question relating
controversies in the USA, below).
What are the controversies with Lyme Disease – in Australia & in the USA? There are
several controversies around Lyme Disease, here are a few
▪ Some Doctors believe that Lyme Disease does not exist in Australia. They believe that
anyone who has contracted Lyme Disease must have travelled overseas to contract the disease
in more endemic areas (such as the USA & Europe). This misunderstanding stems from the
fact that in Australia there is still research to be done about what kind of bacteria (spirochete)
causes Lyme Disease here, and in identifying exactly the type of tick that carries Lyme Disease
in Australia. There are a large number of doctors who do believe that Lyme Disease exists in
Australia and treat it accordingly – this is based on their experience of treating patients who
have positive blood tests for Lyme Disease but have never left Australia – as well as numerous
scientific studies about Lyme Disease in Australia.
▪ Testing for Lyme Disease is notoriously unreliable. This is partly because of the life cycle of
the Bacteria (spirochete), and that it hides in tissues in the body (and does not handily live in
the blood stream to make testing easier). The diagnosis of Lyme Disease should NOT be based
on blood tests alone – it is a clinical diagnosis which takes into account current and past
symptoms. A 2005 Johns Hopkins study found that current blood tests in the USA for Lyme
Disease miss 55% of Lyme Disease patients (the situation is much worse in Australia where
testing is in its infancy)
▪ In the USA there is a large controversy in how Lyme Disease is treated (and this is
sometimes reflected in treatment options in Australia). Doctors who belong to the Infectious
Diseases Society of America believe that Lyme Disease is hard to get and easy to treat with a
short course of antibiotics (they also do not accept the existence of chronic Lyme
Disease). This is strongly disputed by doctors who belong to the International Lyme and
Associated Diseases Society, who believe that Lyme Disease is easy to catch and difficult to
treat if not treated effectively initially. The IDSA and ILADS continue to disagree about Lyme
Disease diagnoses and treatment, and this has led to a number of legal cases. The Lyme
Disease Association of Australia believes that the position taken by ILADS is more
scientifically accurate and is saving lives, whilst the position taken by the IDSA (and
associated doctors in Australia) has led to the under treatment of Lyme Disease with dire
consequences for many people who have gone on to develop Chronic Lyme Disease.
Where is Lyme Disease found? Lyme Disease has been found on every continent, except
Antarctica (although birds infected with Lyme Disease and carrying infected ticks on them have been
www.lymedisease.org.au found in Antarctica).
What are Lyme Disease co-infections? Ticks that carry Lyme Disease don’t just carry Lyme
Disease, but carry other diseases as well – these can include Babesiosis, Bartonella, Ehrlichiosis,
Tularemia, Rikettsia, Mycoplasma etc. These can be treated at the same time as Lyme Disease, but
often require different medications to treat them (eg Babesia is treated with anti-malarial drugs as it
is a parasitic infection).
What is the diagnosis of Lyme Disease based on? Because Lyme Disease testing is currently
so unreliable, Lyme Disease is primarily a clinical diagnosis – your doctor will base this on your
current symptoms, medical history and possible exposure to Lyme Disease (note – not everyone
remembers a tick bite, and only 30% of people get the bullseye rash)(see below).
I didn’t get a bullseye rash, could I have Lyme Disease? A bullseye rash (called an Erthema
Migrans rash) is one of the symptoms of Lyme Disease – but only 30% of people get the rash. Some
people get a different type of rash, and a significant number of people don’t get a rash at all.
Where can I get a blood test for Lyme Disease? How reliable are tests for Lyme
Disease? Blood tests for Lyme disease are recognised as currently being unreliable, as the bacteria
(spirochete) that causes Lyme Disease does not primarily live in the blood, but in tissues. The
spirochetes have also been very difficult to grow in laboratories, which is why Lyme Disease is
primarily a disease that is diagnosed clinically, rather than by blood test result. Lyme Disease testing
in Australia is its infancy, and for this reason the Lyme Disease Association does not recommend any
particular testing in Australia. If you are keen to get tested, the most reliable testing is the Western
Blot test, and the most reliable laboratory is IGeneX in California. However the tests need to be
interpreted by a medical practitioner with extensive experience in Lyme Disease, as US government
regulatory controls have influenced the way Lyme Disease blood tests are reported, and this adds a
further layer of complexity to their interpretation. You can find the details for Igenex (and how to
send blood to them) in the resources section of our website.
I don’t remember being bitten by a tick, could I have Lyme Disease? Yes, you could have
Lyme Disease. Not everyone will remember being bitten by a tick. This may be because it was so long
ago, but also because ticks can be as small as a poppy seed and are easily missed, as well as the fact
that the tick injects a small amount of natural anaesthetic into your skin when they latch on, so you
can’t feel them feeding on you.
Is it Lymes Disease, or Lyme Disease? Lyme Disease (there is no S on the end of Lyme) – this
is because it is named after the town of Lyme, in Conneticut, USA.
Where did the name Lyme Disease get it’s name from? Lyme Disease is named after Lyme
Connecticut, USA, where in 1975 a large number of cases were identified in a group of children
previously thought to have juvenile rheumatoid arthritis.
Where can I get treatment in Australia? Please contact us suggestions for recommended
doctors and naturopaths in Australia who treat Lyme Disease.
Who are the people most susceptible to getting Lyme Disease? Children are the number
one group of people most susceptible to Lyme Disease, as they are outside more than most adults
(30% of Lyme Disease patients in the USA are children). The second group of people most
susceptible to getting Lyme Disease are those people who are outside for work, as they have a greater
exposure than the rest of the population.
www.lymedisease.org.au Where is Lyme Disease found? Lyme Disease has been found on every continent of the planet
(except Antarctica- although birds infected with Lyme Disease and carrying infected ticks on them
have been found in Antarctica). It is endemic in the USA, and is increasingly a problem in Europe.
What are some “complementary treatments” for Lyme Disease? As with many diseases,
there is no one treatment that works for all people. Some members of the LDAA have found the
following useful in the treatment of their Lyme Disease (sometimes in combination with antibiotics,
and sometimes on their own) :
▪ Naturopathy
▪ Homeopathy
▪ Bowen Therapy
▪ Massage (especially lymphatic drainage during treatment with antibiotics)
▪ Rife Machines
▪ Supplements etc.
As with any health decision, we encourage you to do your research and make your own decisions,
based on the opinions of people that you trust. Be wary of people claiming to have a “cure” for any
disease, let alone Lyme Disease. Because Lyme Disease is such a complex and potentially fatal
disease, we encourage you to work with an experienced Lyme Literate Doctor or Naturopath in
whatever treatment plan you choose. Treating yourself without the assistance of an experienced
doctor or naturopath can be dangerous and slow down your healing time.
What do I do if I get a tick bite? You must remove the tick carefully with long nosed tweezers or
tick removal tool – this is so that you avoid squeezing the tick and its infectious contents into your
blood stream
▪ UNDER NO CIRCUMSTANCES should you cover the tick in metho, rubbing alcohol, bi-carb soda,
Vaseline, or any other substance or burn it with a match – this will make the tick release
bacteria-containing lyme disease (as well as other organisms and disease) into your blood
stream
After you have removed the tick you should go to your Dr and get a course of prophylactic antibiotics
(currently amoxicillin combined with probenecid for 28 days is the preferred prophylactic
treatment) . This prophylactic course of antibiotics dramatically reduces (but does not eliminate
completely) your chances of going on to develop Lyme Disease.
Where can I get more information? Please see our Resources handout for suggested places on
where to get more information.
Where do ticks live? Ticks can be found in most wooded or forested regions throughout the
world. There are some areas in Australia where the ticks are known to be of a high risk of carrying
Lyme Disease. www.lovemypet.com.au/tickareasinaustralia
What can I do to prevent getting Lyme Disease? In order to prevent contracting Lyme
Disease, you want to prevent tick bites. Please visit our website on Prevention (www.
lymedisease.org.au/about-lyme-disease/prevention), and read through the page carefully. It is very
important NOT to use metho or other topical applications directly onto the tick while it is attached to
you, as these can promote the release of bacteria containing Lyme disease (as well as other organisms
and disease) from the tick into your blood stream. Our recommendations follow the course of
prophylactic treatment recommended by ILADS (www.ilads.org).
www.lymedisease.org.au