Lyme Disease Association of Australia

Lyme Disease Myths

-       There is no Lyme Disease in Australia – this is FALSE.  The misconception that Lyme Disease does not exist in Australia is based on a study in 1994 by Russell and Doggett.  There were numerous problems with this study and it’s methodology, which are the focus of an upcoming article in the Medical Journal of Australia.  By contrast Willis was able to identify the bacteria that causes Lyme Disease in Australian ticks in 1995.  In addition to this Carly and Pope found an Australian strain of Borrelia, Borrelia Queenslandica in 1962. A 1959 study by Mackerras isolated Borrelia on Australian fauna – kangaroos, wallabies and bandicoots, this was also omitted.  Adding to this is the fact that a large number of diagnosed Lyme Disease patients in Australia have never travelled out of Australia.  More study desperately needs to be done on Lyme Disease in Australia.

-       Putting metho/Vaseline/ether (etc) on a tick will help it be removed – this is FALSE & dangerous – It is vital that NOTHING is added to the tick and that the tick is not squeezed or it will inject you with the disease ridden contents of its’ stomach.  For the correct removal of a tick, please see here and here.

-       The tick that causes Lyme Disease is not in Australia – this is FALSE.  This assumption is based on the false understanding that only deer ticks can transmit Lyme Disease – this has been proven to be false for many years in the USA and Europe, where there are numerous ticks that transmit Lyme Disease – some of which are in Australia.  The main tick areas in Australia can be seen here. Here is a collection of research about ticks as vectors of Lyme Disease in Australia.

-       Lyme Disease cannot be transmitted from one person to another – this is FALSE.  Lyme Disease has been found in stillborn babies who’s mother was infected with Lyme Disease (see here for numerous citations).  There are a growing number of children in Australia diagnosed with Lyme Disease who have never travelled out of Australia and who’s mother has Lyme Disease.  Syphilis and Lyme Disease have similar etiologic, clinical, and epidemiologic characteristics (and both are caused by spirochete bacteria).  Because Syphilis can be transmitted sexually there is a theory that Lyme Disease can also be transmitted sexually (backed up by the fact that the bacteria that causes Lyme Disease has been found in semen and vaginal secretions).  More study needs to be done on the sexual transmission of Lyme Disease, which is currently a controversial diagnosis.

-       Lyme Disease testing is 100% reliable – this is FALSE.  Testing for Lyme Disease is not currently reliable, and so the diagnosis of Lyme disease is a clinical diagnosis based on medical history and clinical symptoms.  The testing is unreliable for two reasons – firstly the bacteria that causes Lyme Disease often does not reside in the blood but in tissues, heart, nervous system, in collagen and in joints, which makes it very difficult to isolate during a blood test.  Secondly, testing for an immune response to the Lyme Disease bacteria is hampered by the fact that the Lyme Disease bacteria directly supresses the immune system and the production of antibodies against the bacteria.  This means that there is a high level of false negative blood test results for Lyme Disease.  The consequences of this fact are that a negative result for a blood test for Lyme Disease is not proof that a patient does not have Lyme Disease, rather that their immune system has not been able to mount an adequate defence against the infection.  Anecdotally it has been found that the sicker a patient is with Lyme Disease, the higher the chance that they will receive a negative blood test – sometimes after successful treatment of the Lyme Disease and resolution of symptoms, the blood test will come back positive, when it was previously negative.  Adding to this is the fact that the testing for Lyme Disease in Australia is very unreliable – most Lyme Disease patients send their blood to the USA or Germany for testing. see www.igenex.com

-       Two tier testing of Lyme Disease is accurate – this is FALSE – “The step 1 tests are insufficiently sensitive to be used as “screening” tests. [Trevejo R, JID 1999; 179:931–8.] Western blots, increase specificity but, following a step 1 test, further decrease overall sensitivity. The bands included in the Western blot interpretation schemes were chosen on a statistical, rather than a clinical, basis.[Dressler F. JID 1993; 167:392-400.] Recently, the C6 peptide ELISA alone was proposed as an alternative to the two-tier approach. Unfortunately, the C6 ELISA also lacks adequate sensitivity for clinical use.[Bacon R. J Infect Dis 2003; 187:1187- 99.]” (quoted from the ILADS website – we couldn’t explain it better ourselves).

-       If you have a negative Lyme Disease blood test, you don’t have Lyme Disease – this is FALSE – Lyme Disease is a clinical diagnosis based on medical history and clinical symptomology.  Please see above regarding testing – you can also see here for more information.

-       Lyme Disease is rare in Australia – this is FALSE – Lyme Disease diagnosis is not common, but Lyme disease itself appears to be grossly under diagnosed in Australia and there are at least 15,000 people with Lyme Disease diagnoses in Australia (and conservative estimates suggest another 200,000 undiagnosed people) – this does not make it rare, especially when most Dr’s are not trained in diagnosing or treating Lyme disease.  Lyme Disease is often misdiagnosed as MS, Motor Neurone Disease, Parkinson’s Disease, Lupus, Alzheimer’s Disease, Fibromyalgia, Chronic Fatigue, and numerous psychiatric illnesses.  Because the symptoms of Lyme Disease are unique to each person and because so many body systems can be involved it is a difficult disease to diagnose without specific training.  For a more complete listing of symptoms of Lyme Disease, please see here. More research into the extent of Lyme disease in Australia needs to be done.

-       A one off dose of doxycycline after a tick bite can prevent you from getting Lyme Disease – this is FALSE & dangerous as it increases the chance of you going on to have long term Lyme Disease – at least 28 days of specific antibiotics are required to lower the chances of contracting Lyme Disease.  Treatment of acute or chronic Lyme Disease requires teatment for much longer.  For more information please see here.

-       Everyone gets the Lyme Disease rash – this is FALSE – only 35% of people with Lyme Disease get the classic bullseye rash.

-       If you didn’t get bitten by a tick you can’t have Lyme Disease – this is FALSE – only 30% of people who are diagnosed with Lyme Disease remember a tick bite.  The tick injects local anaesthetic into your skin before it bites you, so that it may stay attached longer.  This means that most people don’t remember the tick bite at all.

-     if you remove a tick within 36 hours it can not give you Lyme Disease – this is FALSE – not only is this false, it just doesn’t make sense.  At any time during the tick being attached it can regurgitate the infectious disease containing contents of its stomach into your blood stream.  This is why removing the tick carefully is so important, as squeezing the tick has the same effect.

-       If you have Lyme Disease, you just need 1 month of antibiotics and it is cured – after that it is “Post Lyme Syndrome” – this is FALSE  - Lyme Disease can affect every system in the body.  Because it is a slow replicating bacteria it is also very difficult to kill.  For this reason some people will be on antibiotics for up to 2.5 years (or longer), especially if they are very sick, have been sick for a long time or have neurological Lyme Disease.  Lyme Disease is treated until a period of time after all symptoms have resolved (to make sure that the majority of bacteria are killed) – stopping treatment prematurely dramatically increases the likelihood of a relapse, and a higher bacterial load than before treatment, which can prolong treatment even further.

-       There is only 1 type of Lyme Disease – this is FALSE – There are 14 genospecies of Borrelia Burgdorferi senso lato (the bacteria that causes Lyme Disease) – which includes BB senso stricto.  This diversity is thought to contribute to the antigenic variability of the spirochete and its ability to evade the immune system and antibiotic therapy, leading to chronic infection.

-       The only symptoms you get with Lyme Disease are arthritis – this is FALSE – one symptom of Lyme Disease can be atypical arthritis, however, it is not the only symptom – for a more complete symptom checklist, please see here.

-       Lyme Disease only gives physical symptoms – this is FALSE – because the bacteria that cause Lyme disease can penetrate into the brain, they can cause numerous neurological and psychiatric symptoms in some patients – for more information, please see here (psychiatric Lyme disease treatment tools)

-       Lyme Disease isn’t that serious – this is FALSE – Lyme Disease (particularly neurological Lyme disease) can be fatal – see Karl McManus’ story here.

-       The Center for Disease Control (CDC) definition of Lyme Disease misses a lot of Lyme disease patients – this is TRUE – The Center for Disease Control and Prevention (CDC) surveillance criteria for Lyme Disease were devised to track a narrow band of cases for epidemiologic purposes. As stated on the CDC website, the surveillance criteria were never intended to be used as diagnostic criteria, nor were they meant to define the entire scope of Lyme Disease.

Top Ten Tips for preventing Lyme disease http://www.ilads.org/lyme_disease/lyme_tips.html

Treatment Guidelines for Lyme Disease can be found here www.ilads.org/lyme_disease/treatment_guidelines

Brochures on Lyme disease for Dr’s & patients can be found here www.ilads.org/lyme_disease/lyme_brochures

Articles & resources on Lyme disease can be found here http://www.lymepa.org/literature_references.html

www.karlmcmanusfoundation.org.au/resources

Correct removal of ticks can be found here www.lymedisease.org.au/about-lyme-disease/about-ticks  and here http://www.canlyme.com/prevention.html – tick removal

Areas with ticks in Australia can be found here http://www.lovemypet.com.au/tickareasinaustralia.htm

Information on stillborn babies with Lyme Disease can be found here http://www.lymedisease.org.au/wp-content/uploads/2012/07/peer-reviewed-journal-articles-regarding-transplacental-transmission-of-lyme.pdf

Lyme disease testing information can be found here http://www.karlmcmanusfoundation.org.au/lyme-disease-information/index.php?id=5

A to Z of Lyme Disease symptoms can be found here http://www.lymediseaseaction.org.uk/symptoms.php  and here http://www.mnlyme.com/files/Symptoms_Checklist.pdf

Treatment information http://www.ilads.org/lyme_disease/treatment_guidelines.html

Information on antibiotic resistance can be found here http://www.canlyme.com/antibiotic_resistance_lyme.html

Psychiatric Lyme Disease http://www.mentalhealthandillness.com/lymeframes.html

Thank you to the Karl McManus Foundation for their assistance in the production of this leaflet.  www.karlmcmanusfoundation.com.au