Frequently Asked Questions About Lyme Disease
Throughout this section, 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
Lyme Disease FAQ’s (Frequently Asked Questions) – we have answers to questions regarding doctors, cost of treatment, length of treatment, testing (including logistics), tick bites (including recent tick bites and prophylactic treatment), contact and general Lyme Disease questions.
Can you find me a doctor in X suburb who treats lyme disease? 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 kilometres of your home, then you are very lucky – this is true even if you live in a major city.
Can you find me a doctor in X suburb who bulk bills and who will treat lyme disease? 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.
Cost of treatment
Lyme Treatment is so expensive, can’t you find me a cheaper way of doing it? 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.
Length of Treatment
Why does it take so long to treat Lyme Disease? 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.
Testing (for information about how to send your blood to the US for testing, please see here and select the “how to send blood to Igenex handout. For information on interpreting Lyme Disease blood test results, please see here)
I have a positive blood test for Lyme Disease, but my doctor says it is a false positive result. What does it mean? 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.
I have a negative Lyme Disease blood test, but I am still sick. What does this mean? 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.
If the blood tests are so inaccurate, what is the point of getting tested? 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).
I think I might have Lyme Disease. Should I get tested first, or go and see a doctor who specialises in Lyme Disease first? It is more effective if you work with an experienced lyme doctor to decide if testing is appropriate for you & which tests you may require (depending on your symptoms and your potential con-infections).
Can you please tell me where my local pathology collection centre is? 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 & 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.
Where is my local Fedex office? Please contact Fedex directly to find your closest Fedex office.
Do I really have to take my blood to the Fedex office, can’t I get them to pick it up? 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.
Tick Bites (including recent bites)
I was bitten by a tick a few days ago and my doctor wrote a script for 2 weeks of antibiotics, is this enough? NO – the prophylactic treatment of Lyme Disease requires medications such as Doxycycline (200mg twice a day)(for adults) & 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.
What do I do if my doctor won’t give me antibiotics?? 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.
I’ve never been bitten by a tick, so I can’t have Lyme Disease – is this correct?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.
I was bitten by a tick and didn’t get a rash, but I did get some strange symptoms and have not been well since. Could I possibly have Lyme Disease? YES – only 30% of people with Lyme Disease get the classic bulls eye rash.
I was bitten by a tick and got a bullseye rash. Is it certain that I have Lyme Disease? 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).
I’ve never left Australia. I don’t even have a passport. I can’t have Lyme Disease, can I? 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 not reliable, in that it misses over 50% of cases, but a positive test of lyme disease is proof that you have Lyme Disease, even if you have not left Australia).
I sent you an email 2 days ago/letter 3 weeks ago & I haven’t heard from you. Why are you ignoring me? The Lyme Disease Association of Australia is entirely staffed 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).
General Lyme Disease Questions
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 mother’s 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. 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 under-treated) 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 a list 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 – 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 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 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.
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 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 (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.
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).
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 given by a clinical diagnosis. Lyme Disease testing in Australia is it’s 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 their details (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 inject 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 for a list of recommended doctors and naturopaths in Australia.
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.
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) :
- 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?
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) & 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),
Where can I get more information?
Please see our Resources section 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 known to be of a high risk of carrying Lyme Disease. See our section about Ticks for more information.
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 section on 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 the International Lyme and Associated Diseases Society.