QUICK HELP AND ADVICE

The Lyme Disease Association of Australia (LDAA) receives many requests for information and assistance on a daily basis.  Our Association is run by volunteers, hence hopefully your question/s can be answered by the information on our Website in the first instance.

Under this heading you will find some brief help and advice if you are new to the world of Lyme disease, however our Website offers a great deal of information (some quite technical), which has and will evolve further in the future.

Whether you are a sufferer, a carer, a medical professional, or simply want to know a little more about Lyme disease or Lyme-like illness and cannot find the information on the Website please feel free to contact us.

I’ve Been Bitten By a Tick.  What do I do now?

Firstly, don’t panic!  Not all ticks carry micro-organisms that make people sick.

Following the steps below will minimise the risk of a tick-borne infection:

Remove the tick ASAP

If you have a history of allergic reactions to tick bites, removal must be done at a medical facility such as an Emergency Department.

Otherwise, you can remove it yourself:

  • Locate some fine-tipped tweezers, or a tick removal tool with fine tips.
  • Using the tweezers or tool, press the skin down around the tick’s embedded mouth.
  • Grip the tick’s mouthpart firmly, then gently detach the tick using an upward motion with steady, even pressure.
  • Store the tick in a plastic ziplock bag labeled with your name, the date, the area where you were bitten, the body part bitten and the period of time you believe the tick was attached for.
  • Place the bag in your freezer for safe keeping; if you develop symptoms, your doctor may want to see the tick.
  • Apply a skin disinfectant to the bite area, then wash your hands thoroughly.

Monitor your health

If you notice a rash or become ill following after a tick bite, seek medical advice immediately.

If you were bitten in Australia, your doctor is likely to consider tick paralysis,1 Queensland Tick Typhus, Flinders Island Spotted Fever2 and Mammalian Meat Allergy.3 Most doctors don’t consider Lyme-like illness as it’s not yet formally recognised.4

If you would like to consult a doctor or naturopath who recognises Lyme-like illness, contact us. Please note that we do not evaluate these practitioners, we simply pass on the details provided to us by other patients.

If you are unable to get an appointment straight away, keep a diary of your symptoms, and photograph any rashes. This will help your healthcare practitioner conduct a thorough assessment.

I Think I Have Lyme Disease or Lyme-like Illness. Can You Recommend a Doctor?

The Government recommends that Lyme disease is treated with a few weeks’ use of a single antibiotic.5  This advice is based on inadequate American guidelines that have been removed from the American Government’s treatment database as they are outdated.6

The Australian Government doesn’t currently recognise Lyme-like illness at all, due to limited research.

It can therefore be difficult to find a doctor willing to treat these conditions effectively.

As a result, many patients are treated by general practitioners who have educated themselves on the International Lyme and Associated Diseases Society’s (ILADS) guidelines, which are endorsed by the American Government.7  These guidelines recommend long term treatment and use of multiple antibiotics where appropriate. They have been effective in treating both Lyme and Lyme-like illness.

Some naturopaths also provide herbal treatment based on the International Lyme and Associated Diseases Society’s advice.

Please contact us for details of these healthcare practitioners.  Please note: we do not evaluate any of these practitioners; we simply pass on their details.

If you are unable to get an appointment straight away, keep a diary of your symptoms and photograph any rashes.  This will help your healthcare practitioner conduct a thorough assessment.

How Can I Get Tested For Lyme Disease or Lyme-like Illness?

Blood tests for Lyme disease are available. However, international authorities acknowledge that results are often inaccurate. Some American states even have laws requiring doctors and government websites to inform patients of this!8

So although Lyme tests may be conducted, doctors also take into account patients’ symptoms and history when considering diagnoses.

There are no specific tests available for Lyme-like illness, as the cause hasn’t yet been confirmed. However, patients often receive positive results from Lyme disease tests.

Testing must be requested via a doctor. The only exception is the Australian Biologics laboratory, who will also accept referrals from naturopaths.

You can contact us for details of doctors and naturopaths experienced in treating Lyme and Lyme-like illness.  Please note: we do not evaluate any of these practitioners; we simply pass on their details.

There is a possibility you have contracted a tick-borne disease other than Lyme or Lyme-like illness. Your healthcare practitioner will discuss the relevant test requirements with you.

Testing can be a complex topic. If you have any further questions you would like to discuss with us, please contact us.

I’m already diagnosed and want some treatment advice. Can you help?

The Lyme Disease Association of Australia (LDAA) is staffed by volunteers who are not in a position to provide you with medical advice. We recommend that you discuss any treatment options you are considering with your healthcare practitioner.

An affiliation has been formed by the LDAA with Dr Nicola Ducharme, who is a Naturopathic Doctor who trained as a naturopath in Australia. She then earned her Doctorate in Naturopathic Medicine from the prestigious Bastyr University in Seattle, moving to San Diego in 2003 to start her private practice. As founder and Medical Director of RestorMedicine, she specialises in working with individuals with chronic Lyme disease.  Dr Ducharme offers patient and practitioner training.  Alternatively if you would like to let your practitioner or carer know the training is available, please print the attached flyer.

If you have any questions or need support, please contact the LDAA at community@lymedisease.org.au.

Other sources of information including books and websites can be found on our Resources page. This page also lists details of patient support groups. These groups regularly share their experiences and research regarding treatment.

A Doctor or Hospital Has Treated Me in an Unprofessional Manner. What Should I Do?

We are so sorry that this has happened to you. The impacts of serious illness are difficult enough to cope with, without having to also be subjected to unprofessional and uncompassionate treatment. It can be a very traumatic experience.

Unfortunately, you are not alone. We have heard from many patients who have been openly ridiculed, dismissed from hospitals without diagnosis or treatment, and even committed to psychiatric wards.

The Government has been made aware of this issue via regular correspondence by the LDAA and other patient advocacy groups. We hope that in time, the stigma and mistreatment of patients will be addressed appropriately. In the meantime, we have some suggestions for you:

  • If you are not already consulting a doctor who is experienced in treating Lyme disease and Lyme-like illness, contact us. We will provided you with details of relevant doctors and naturopaths.  Please note: we do not evaluate any of these practitioners; we simply pass on their details.
  • Show yourself the compassion that you should have been given. The way you were treated is not your fault, and you need and deserve care.  Talk to Lifeline or a loved one about the way you are feeling.
  • Consider making a complaint. Google ‘health care complaints’ and your state for information on how to formally submit a complaint.
  • Contacting your local Member of Parliament, or the office of the Health Minister is another option.

I’ve Found a Tick – Can I Donate It For Research?

Thank you for considering this option; more research of Australian ticks is definitely needed!

If there is a project currently accepting ticks, you’ll find the details on our Resources page, along with relevant instructions.

If there are no studies requiring ticks, you may decide to keep your tick for future projects. Please handle it very carefully.  Store it in a plastic ziplock bag labelled with the date and the location you found it in. Place the bag in your freezer for safe keeping.

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Footnotes

  1. Australian Government Department of Health, Tick bite prevention, accessed Apr 2018, http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-tick-bite-prevention.htm 
  2.  NSW Government Health, Typhus (epidemic, murine and other rickettsial diseases), accessed Apr 2018, http://www.health.nsw.gov.au/Infectious/factsheets/Factsheets/typhus.PDF
  3. Australian Government Department of Health, Tick bite prevention, accessed Apr 2018, http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-tick-bite-prevention.htm
  4. Australian Government Department of Health, Tick bite prevention, accessed Apr 2018, http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-tick-bite-prevention.htm
  5. NSW Health, Lyme disease fact sheet, accessed Apr 2018, http://www.health.nsw.gov.au/Infectious/factsheets/Pages/Lyme_disease.aspx
  6. NSW Health, Lyme disease fact sheet, accessed Apr 2018, http://www.health.nsw.gov.au/Infectious/factsheets/Pages/Lyme_disease.aspx
  7. Lyme Disease Association Inc, Official Word on IDSA Guidelines’ Removal from NGC, accessed Apr 2018, https://www.lymediseaseassociation.org/index.php/lda-news-a-updates/1456-official-word-on-idsa-guidelines-removal-from-ngc
  8. Virginia’s Legislative Information System, An Act to amend the Code of Virginia by adding a section 54.1-2963.2, relating to Lyme disease; disclosure of information to patients, 2013, http://lis.virginia.gov/cgi-bin/legp604.exe?131+ful+CHAP0215 Vermont General Assembly, An Act relating to Lyme disease and other tick-borne illnesses, 2014, http://legislature.vermont.gov/bill/status/2014/H.123 State of Rhode Island General Assembly, Lyme Disease Diagnosis and Treatment Act - amendment, 2014, http://webserver.rilin.state.ri.us/Statutes/TITLE5/5-37.5/5-37.5-6.HTM General Assembly of Maryland, An Act concerning Lyme disease – Laboratory Test – Required Notice, 2016, http://mgaleg.maryland.gov/webmga/frmMain.aspx?pid=billpage&stab=02&id=SB0926&tab=subject3&ys=2016rs The State of Maine, An Act To Inform Persons of the Options for the Treatment of Lyme Disease, 2013, http://www.mainelegislature.org/legis/bills/bills_126th/chapters/PUBLIC340.asp The subsequent update is located at: http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/