Whereas real Lyme disease is a curable, well-understood, and geographically restricted infection, “chronic Lyme” is a social phenomenon transmitted via the internet and quacks.
A stark example of this social phenomenon can be seen in the thousands of people who think they have chronic Lyme in Australia, where there are no known endemic Lyme infections. In Australia, like in other countries, advocacy for chronic Lyme quackery has resulted in wasteful government investigations that don’t help patients.
In response to the government inquiry into “Lyme-like illness” in Australia, an anonymous infectious disease doctor wrote the following letter:
I am an Infectious Diseases Physician and Fellow of the Royal Australasian College of Physicians. I have nine years of post-fellowship experience and have seen numerous patients who have presented with suspected Lyme Disease – absolutely none of whom turned out to have the condition upon deeper investigation.
Disturbingly, it is becoming increasingly common for patients to be diagnosed as suffering from Lyme Disease or a Lyme-like-illness by a small group of so called “lyme-literate” doctors when in fact they may be suffering from conditions that are more serious and therefore go undiagnosed. Patients who have presented to my colleagues or myself after such mis-diagnosis have ultimately been proven to be suffering from a range of conditions including thyrotoxicosis, rheumatoid arthritis, major depression, systemic lupus, anxiety disorders, multiple sclerosis, motor neuron disease or cancers.
On a number of occasions I have seen management plans prepared for patients by “lyme-literate” doctors which have included blood and urine tests sent to non-NATA accredited laboratories both within Australia and overseas to the cost of several thousand dollars to the patient which returned results which were conflicting and non-sensical. The treatments prescribed have included a combination of antibiotic and other drugs at doses that do not follow any guideline (for example antimicrobials at four to six times the recommended maximum dose) for more than twelve months without apparent monitoring. Patients incur costs in the tens-of-thousands of dollars. In two cases of which I am personally familiar with, patients have mortgaged their homes in order to travel overseas to receive costly, inappropriate treatments for a mis-diagnosed condition.
The actual treatment required for rare genuine cases of Lyme Disease (i.e. contracted overseas) is usually two weeks of a single antibiotic which is available under the PBS for a nett cost to the patient of around $30. This is a condition which any Infectious Diseases physician in any public hospital is able to diagnose and manage at no cost to the patient.
The “lyme-literate” doctors of the so-called Australian Chronic Infectious and Inflammatory Disease Society [ACIIDS] have proposed evidence in favor of the existence of endemic lyme disease or a lyme-like illness in Australia, however their reasoning confuses correlation with causation (one example: patients getting better when given antibiotics is not proof of a Lyme-like illness – it could simply be due to the Placebo effect or simply because patients do tend to get better with time). Moreover they present research which has not been offered up to any peer-reviewed national or international Infectious Diseases publications or meetings and rely on results from non-NATA accredited laboratories, which are therefore of questionable repute.
There is a simple lack of any meaningful evidence for the existence of Lyme disease or Lyme-disease-like- illness indigenous to Australia. The vector for Lyme disease has never been found in Australia and our ticks have been sampled (>10,000 individuals) without Borrelia sp. having been detected. Moreover, there has never been proven isolation of Borrelia sp. from blood or tissues of any patients who have supposedly acquired Lyme disease in Australia. Those individuals with compatible clinical syndromes and with positive IgG ultimately were not confirmed by Western Blot. Despite skepticism among some groups about local Lyme disease testing, Australia’s NATA accredited laboratories are expert, reputable and reliable institutions.
There are advocates who strongly believe that Lyme Disease or a Lyme-like illness (a vaguely defined condition thought to be caused by a Borrelia-like organism and transmitted by an undiscovered tick) is endemic in Australia and that there is a systematic conspiracy by the medical profession to hide or avoid making adequate treatments available to those who suffer. This is not the case as there are clear diagnostic pathways to confidently rule out Lyme Disease.
Many people who have come to believe they have Lyme Disease have had genuine long-standing and often debilitating symptoms causing physical incapacity as well as anxiety and frustration. They have then searched the internet where information about Lyme Disease has become dominated by websites which fervently peddle misinformation.
Many individuals ultimately rely on information from The Lyme Disease Association of Australia website. This site presents data as though it were evidence-based research however the information is anecdotal and misleading and they publish treatment regimens which are not based on any acceptable guideline. These regimens are ultimately dangerous (and the Lyme Disease Association should be forced to remove such medical advice from their website).
The hundreds – or thousands – of people who believe that they have a Lyme-like illness need individual, thorough medical evaluations that include careful assessments of their mental wellbeing as well as screening for other serious health problems and, where warranted, screening for Lyme Disease using the proven and accepted two-tiered serological tests available in Australia. In my experience the most important management aspect is to acknowledge that people have an illness. I feel strongly that labelling vague symptomatology as “lyme-like illness” is a huge disservice to individuals who deserve thorough investigation and specific diagnosis of their medical issues.
More resources:
LymeScience: Chronic Lyme in Australia
LymeScience: Tainted glutathione probably poisons chronic Lyme patients in Australia
Dr Brad McKay: Why thousands of Aussies claim to have Lyme disease
ABC: Lyme disease does not exist in Australia, researchers say