FAQ

ILADS is the International Lyme and Associated Disease Society based in the United States of America;
IDSA is the Infectious Diseases Society of America;
LDAA is the Lyme Disease Association of Australia ; and

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).

The LDAA operates a patient referral system whereby current patients provide us with details of physicians they are undergoing treatment with. We compile a list of those physicians based on state and provide those details when requested. Importantly, the LDAA cannot and does not evaluate physicians. If you would like assistance in finding a physician please contact us.

No. There are very few doctors effectively treating Lyme Disease in Australia. If you have a doctor with experience treating Lyme Disease within a few hundred kilometers of your home, then you are very lucky – this is true even if you live in a major city.

No. Currently none of the doctors in Australia treating Lyme Disease bulk bills their patients – even patients with health care cards. Many Lyme patients take out loans from banks, family & friends in order to pay for their treatment.

The treatment for Lyme disease is tailored to each individual and their symptoms, medical history and situation. 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 physician 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 under-treated) it can be fatal. If you would like assistance in finding a physician please contact us.

There are a growing number of physicians in Australia treating people for Lyme disease. If you would like assistance in finding a physician please contact us.

Some Doctors mistakenly believe that there is no such thing as Lyme Disease in Australia, and refuse to treat people with Lyme Disease – most of these are infectious diseases doctors who follow the guidelines of the IDSA in America (please see the question Are there controversies 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 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 currently published treatment guidelines.

Firstly the vast majority of Lyme disease patients don’t only have Lyme disease, but also have one or more of the common co-infections such as Babesiosis, Bartonella, Brucella, Ricksettia etc.

Secondly the bacteria that causes Lyme disease needs multiple medications to treat, as it can be in several forms, including the cyst form, which requires a bio-film busting medication in order to be effectively treated.

Thirdly, many bacterial infections in the body can be treated fairly easily as the bacteria are easily accessible through the blood stream – Lyme Disease (and the associated co-infections) is not the same – the bacteria that causes Lyme disease lives in the cells in your body (including your organs and brain), which complicates and slows down treatment.

We truly understand how expensive the treatment for Lyme disease can be, and many (most) Lyme patients in Australia are under financial stress as well due to their previous large medical bills and their reduced capacity work due to their illness, but unfortunately there aren’t ways of making the treatment more effective or faster.

Your best bet is working with a really experienced Lyme doctor – this speeds up healing and your ability to return to work. “Self-treating” either on your own or with your local doctor’s assistance is dangerous and much less likely to be effective in treating Lyme Disease and its co-infections. If you would like assistance in finding a physician please contact us.

We understand how expensive treatment is, however we are unable to provide any financial assistance to individuals or groups. Should you wish to hold a fundraiser or awareness event we will happily provide brochures to assist you. It is also important that if you plan to fundraise you familirise yourself with the legal and regulatory requirements in your state. The best place to start is your state fair trading or commerce government department.

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. If you would like assistance in finding a Naturopath please contact us.

We don’t currently have any details of RIFE practitioners in Australia. We recommend you reach out to other community members through the the following Facebook pages:

• Lyme and Rife; or
• Lyme Disease Rifers.

The LDAA operates a patient referral system whereby current patients provide us with details of physicians they are undergoing treatment with. We compile a list of those physicians based on location and provide those details when requested. Importantly, the LDAA cannot and does not evaluate physicians. We are aware of the following clinics, though do not endorse any of them they are simply patient referrals.

Germany

Klinic St Georg – located approximately an hour from Munich in Bad Aibling, Germany.

• Klinic St Georg Facebook page
• Klinic St Georg Website
• Australian Lyme patients who have been or intending to go to Klinic St Georg Facebook page
• An American patient’s personal recount of her experience at Klinic St Georg
• An Australian patient’s recount of her experience plus other useful information on Klinic St Georg

BCA – Clinic – located in Augsburg, Germany.

• Australian Lyme patients who have been or intending to go to BCA Clinic Facebook page.
• BCA Clinic Website

United States of America

Dr Richard Horowitz via Hudson Valley Healing Arts Centre, Hyde Park, New York.

• Hudson Valley Healing Arts Centre Website.

Dr Klinghardt via Sophia Health Institute Woodinville, Washington.

• Sophia Health Institute Website.

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.  In the US, the bullseye rash (erythema migrans) of Lyme disease is only present in approximately 25% of cases.  The other 25% of the time, it resembles a solid spreading rash which could be confused with a bacterial infection of the skin (cellulitis) or spider bite.

Currently testing for Lyme disease in Australia is controversial. Most pathology tests ordered by GP’s are ‘screened’, using the ELISA method, by the local laboratory who draws the blood. If the screening test is positive, it is referred to one of two specialist NATA accredited lab (in NSW) where it is rescreened and if positive progresses to a confirmatory Western Blot test subject to a new set of interpretive criteria. This is called a two-tier test method. The two NATA accredited laboratories use different types of test kits, test against different strains of Borrelia and use different criteria to interpret the result of the test. The LDAA maintains there are many flaws in this non-standardised approach to testing and does not recommend testing in this way until the testing process is both validated and standardised. NATA accredited laboratories are approved to provide testing services that attract Medicare rebates.

Alternatively, Australian Biologics is a private laboratory located in Sydney. They are a specialist laboratory in testing for Lyme disease and some co-infections primarily through PCR method. Tests ordered via Australian Biologics are private in nature and do not currently attract Medicare rebates. Information about the testing services provided by Australian Biologics are provided on their website.

Many Australian Lyme disease patients have been sending their blood for testing through the IGeneX laboratory in California, BCA Lab  (formerly Infectolab) or ArminLabs in Germany. ArminLabs, BCA Lab and IGeneX are speciality Lyme disease testing laboratories but do not attract any Australian Government Medicare rebate. An advantage of having blood tested at either IGeneX, ArminLabs or BCA Lab, is that they are also able to test for a range of co-infections – 60% of Lyme disease patients have a co-infection such as Babesia, Erhlichia, Bartonella, Ricksettia etc. You can get more information on how to send your blood overseas and the costs for this here.

You will need to discuss the testing requirements with your physician.

Testing in Australia is based on a two-tiered or step-wise testing process which requires a positive ELISA result before a confirmatory Western Blot test is conducted.

In Australia, the only NATA accredited labs able to provide confirmatory immunoblot services for Lyme disease, are the Institute for Clinical Pathology and Medical Research (ICPMR) at Westmead Hospital or the or Pacific Laboratory Medicine Services (PaLMS) attached to the Royal North Shore Hospital. Both of these laboratories follow a strict two-tier test process; that is a Western blot test is not conducted unless a positive ELISA is obtained.

Dr Armin Schwarzbach MD PhD, from ArminLabs is a committee member of the Clinical Advisory Committee on Lyme disease, provides significant evidence in his paper on Problems and Future in the Testing of Lyme Disease. It highlights the problems with the two-tier approach. Dr Schwarzbach proposes the average sensitivity of an ELISA test is approx. 43%; as such the two-tiered test process produces a large number of false negatives. Because of this, more than 50% of current Australian tests rebated through the Medicare system are not progressed to Western Blot, which equates to coin toss odds in laboratory diagnosis. In addition, there are reportedly over 130 strains of Borrelia, and only 4 are tested for in laboratories in Australia.

IGeneX, ArminLabs and BCA Lab are specialist Lyme laboratories that use the more sensitive Western Blot, or PCR testing and also test for a broader range of Borrelia species. What are false negatives? And how do they apply when testing for Lyme?

A “negative” Lyme disease blood test does not rule out a Lyme infection. Lyme disease is a clinical diagnosis based upon previous medical history and current presenting symptoms – blood tests assist in guiding treatment, but should NOT be used for diagnosis. False positive blood test results are very rare, especially when specific Lyme disease bands are taken into consideration.

The bacteria that causes Lyme disease often does not reside in the blood, but rather in tissues, organs, the nervous system, and in collagen and joints, which makes it very difficult to isolate during a PCR blood test.
The vast majority of blood tests currently do not actually test for the Lyme disease bacteria itself, but rather the body’s immune response to it. With a depressed immune system, we have found that the sicker the patient is, the less likely they are to return a positive result, as their body has not been able to mount a strong immune defence against the Lyme disease bacteria.

It takes the body 6 weeks to 6 months to make antibodies to Lyme disease – therefore testing straight after a tick bite is not recommended. Also, patients with late stage Lyme disease will have an impaired immune response due to the interaction by the Lyme disease bacteria in depressing the immune system, making testing unreliable as well.

For information on how to interpret blood test results please visit our Interpreting Blood Tests page here.

Yes. Australian Lyme patients were repeatedly reporting delays and challenges with the international shipping of the kits for testing. The LDAA and IGeneX consulted and organised a system to send bulk lots of kits from the USA to Australia and LDAA volunteers post kits daily within Australia as directed by IGeneX via email. IGeneX reimburses the LDAA on a cost recovery basis for the postage of these kits by monthly invoice.

Not to the knowledge of the LDAA.

Only 0.01% of positive Lyme tests are false positive (i.e. one in ten thousand positive tests is a false positive result). What is much more common is a false negative test for Lyme disease (especially in Australia where the testing is a lot less accurate than in the US or Germany). A Columbia University study found that current Lyme disease blood tests may miss up to 75% of chronic Lyme disease patients.

Lyme Disease is a clinical diagnosis made on medical history and current presenting symptoms. Blood tests may assist with the diagnosis, but at this stage miss too many people with Lyme disease to be accurate – so if you have a negative test, you can still have Lyme disease.

A positive test result for Lyme disease gives a definitive diagnosis. You only get false positive test results in 0.01% of cases (one in ten thousand positive tests is a false positive result). False negative tests are much more common. This is for many reasons. First, because the Lyme bacteria don’t generally live in the blood, but in your organs and brain. Second, the Lyme bacteria secrete substances to depress your immune system so that your immune system won’t attack the bacteria – the tests for Lyme Disease are actually looking for signs that your immune system is fighting off the infection, not for the disease or bacteria itself. Research has shown that the sicker you are with Lyme disease, the more likely you are to get a false negative test result, as your immune system has not fought off the infection very well. Third, if you have just been infected with Lyme disease, it can take 6 months for your body to be able to return a positive result (it is still essential to get treatment AS SOON AS POSSIBLE after a tick bite to prevent chronic Lyme disease – do not wait 6 months before you begin treatment).

It is more effective if you work with an experienced Lyme doctor to decide if testing is appropriate for you and which tests you may require (depending on your symptoms and your potential con-infections). If you would like assistance in finding a physician please contact us.

No, there are thousands of pathology collections centres around Australia – we are afraid we don’t know where every pathology collection centre in Australia is and don’t know if they will take your blood for you (situations can change) – you will need to ring around and find a local collection centre that will draw and spin your blood for you, and you will need to take the blood to a Fedex office. Many Lyme patients have found doing an online search for the name of their city/town/suburb & the terms “pathology collection” has given them the names of collection centres who they can then ring to organize the blood collection.

Please contact Fedex directly to find your closest Fedex office.

In theory, this is possible, however, the pick up service is not always reliable, and may result in a delay which means your blood will arrive at the Igenex Lab in a condition no longer suitable for testing. To be safe, it is best that you take your blood to the Fedex office.

In Sydney you need to have the blood to the fedex office early on Tuesday morning at the latest. In other cities, you need to have your blood at the Fedex office on Monday morning. Even if the Fedex customer service call centre tells you otherwise, this is false, based on the experiences of many Australian Lyme patients – remember that the Fedex call centre is not used to dealing with parcels that start deteriorating as soon as they are given to them. A 12 or 24 hour delay on a regular parcel is inconvenient for most people, but does not affect complicated pathology tests in the same way that a delay does for blood going for Lyme disease testing.

NO – the prophylactic treatment of Lyme Disease requires medications such as Doxycycline (200mg twice a day)(for adults) and Clarithromyacin (for children) in COMBINATION with a medication such as flagyl for a minimum of 6 weeks – this is because the bacteria that causes Lyme Disease is very slow to replicate, and so requires a longer course of treatment. The combination of medications is very important. Children who do not have all their adult teeth should not take Doxycycline (it causes permanent staining of the teeth in children). It is also important that you take a good probiotic (such as Inner Health Plus) for 8 weeks (it must be taken 2 hours after antibiotics – many Lyme patients take probiotics at bed time and this seems to work well for them). PLEASE NOTE – this is NOT medical advice, we are not doctors. This is the treatment that is currently being used by most ILADS doctors to prevent Lyme Disease following tick bites. We get a lot of emails asking for assistance with this question, hence the answer, but as always, make sure you discuss any medical treatment with your doctor.

We understand that previously there were way too many scripts for antibiotics given out by doctors when they weren’t required, however, taking a 6 week course of medication for the prevention of Lyme disease is lowering the risk that you may get a life altering, severely disabling, potentially fatal disease. If, after you have presented the facts to your local doctor, they refuse to give you a prescription for the medication you require, we suggest that you politely ask them to give you a signed and dated note that they are refusing to prophylactically treat you for Lyme disease following a tick bite.

NO – ticks inject anaesthetic into your skin when they bite you, so most people do not feel most tick bites. Research in America has shown that only 30% of people with Lyme Disease can remember being bitten by a tick.

YES – In the US, the bullseye rash (erythema migrans) of Lyme disease is only present in approximately 25% of cases.  The other 25% of the time, it resembles a solid spreading rash which could be confused with a bacterial infection of the skin (cellulitis) or spider bite.

YES – you only get the bullseye rash if you are suffering from Lyme disease (not all Lyme patients get the rash, but all people with the bullseye rash have Lyme disease).

Numerous studies have found the bacteria that causes Lyme disease in Australia. Also, there are many people who have Lyme disease, but have never left Australia and test positive for Lyme disease (Lyme disease testing is currently unreliable).

Ticks can be found in most wooded or forested regions throughout the world. There are some areas in Australia where the ticks known to be of a high risk of carrying Lyme disease. See our section about Ticks for more information. Alternatively you may wish to view our interactive map which provides an overview of where individuals with Lyme disease in Australia were bitten.

Please see the section on Lyme disease so you know what to do if you get a tick bite. The current prophylactic treatment of Lyme Disease requires medications such as Doxycycline (200mg twice a day)(for adults) and Clarithromyacin (for children) in COMBINATION with a medication such as flagyl for a minimum of 6 weeks (a good probiotic should also be taken for 8 weeks – this should be taken 2 hours after the antibiotics – most people take the probiotics at bed time with no problems),

The Lyme Disease Association of Australia is staffed entirely by a very small group of unpaid dedicated volunteers. Currently we spend 40 hours a week, simply answering emails. We do the best we can, but need to work and look after our families as well – please be patient (and polite).

No you can not get Lyme Disease that way.

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 mother’s being infected with active Lyme Disease at the time of their pregnancy or through breast feeding. There are also some suggestions that Lyme disease can be transmitted sexually though research and evidence is currently limited.

Further information on transmission can be found here.

There are several controversies around Lyme Disease.

Briefly, 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 with positive blood tests for Lyme Disease that have never left 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 it’s 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.

For a more in-depth discussion see our media section here.

Lyme Disease has been found on every continent, except Antarctica (although birds infected with Lyme disease and carrying infected ticks on them have been found in Antarctica). For a spatial view of Lyme disease in Australia view our interactive map.

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 (ie Babesia is treated with anti-malarial drugs as it is a parasitic infection). You can find out more about Lyme Disease co-infections here.

A bullseye rash (called an Erthema Migrans rash) is one of the symptoms of Lyme Disease.  In the US, the bullseye rash of Lyme disease is only present in approximately 25% of cases.  The other 25% of the time, it resembles a solid spreading rash which could be confused with a bacterial infection of the skin (cellulitis) or spider bite.  A significant number of people don’t get a rash at all.

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 inject a small amount of natural anaesthetic into your skin when they latch on, so you can’t feel them feeding on you.

Lyme Disease (there is no S on the end of Lyme) – this is because it is named after the town of Lyme, in Connecticut, USA.

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.

In order to prevent contracting Lyme disease, you want to prevent tick bites. Please visit our section on Prevention, and read through the page carefully. It is very important NOT to use methylated spirits 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 the International Lyme and Associated Diseases Society.

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.

Please see our media section or our resources section which lists a variety of documentaries, books, websites and other patient-centred resources.