A year ago Greg Hunt, Minister for Health, announced the allocation of $3 million for Debilitating Symptom Complexes Attributed to Ticks (DSCATT) research. This week Minister Hunt announced the 2 recipients of the grant funding. I was advised by Minister Hunt that this $3 million is seed funding, for the purpose of generating new knowledge and insights, and that the outcomes of these 2 funded studies should show need and direction for further funding to be allocated to build on the research results.

Points of interest:

  • Only 2 recipients received funding. How many applicants were there?
  • Should the NHMRC be transparent and reveal the 2 successful grant applications in full?
  • Should all applications be made publicly available for stakeholders to comment?

Scientific principles and good study design of each application should determine success. Feedback should be provided to NHMRC and to the leaders of each successful applicant in order to remind them that they are under scrutiny by the sufferers.

We hope these 2 recipients produce positive outcomes for the sufferers of DSCATT, lessening controversy and discrimination, and increasing rapid diagnosis and treatment of this disease in Australia.  Both negative and positive outcomes need to be published. Commonly, scientists are reluctant to publish negative results. This trend needs to change as future researchers can learn from failures; that is, lessons in what not to do from papers with negative results and publications that are not statistically significant.

The psychiatric-based study that is funded aims to use Cognitive Behaviour Therapy (CBT) to revert people who claim to have Lyme disease to health. This study has caused widespread angst among sufferers. The basis of this project ignores the history of tick-bite, largely because patients claim to have Lyme disease. According to scientific literature, B.burgdorferi sensu stricto, the causative agent of Lyme disease in the USA, has not been identified conclusively in Australia. This premise is likely to dominate this study. Most patients who have accepted a Lyme disease diagnosis are more likely to be diagnosed with conversion disorder, a psychiatric disorder in which patients’ physical symptoms are considered mentally induced, the cause and cure unknown. CBT is a psychological method that is applied to psychosomatic disorders to revert people to health. The diagnosis of psychosomatic disorders has increased lately.  Could this recent increase be a result of the marketing of the Lyme name? If the disease caused by a tick-bite (acute or chronic post-bite) was marketed rather than the Lyme name, the focus would have to be on symptoms and not on the name.

A good analogy is AIDS – people focused on the sexual orientation of the patients and not on the symptoms and the immune deficiency. More people died and major social havoc was created. People started to discriminate against sufferers, who were refused treatment, partly for fear of contracting the infection. Similarly, with Tick-Borne Diseases (TBDs) the Lyme lexicon should be avoided at all cost, to prevent conducive clinical sceneries in which psychosomatic diagnosis is used.

Scientific publications in the last 25 years have set the scientific mindset that Australia is not an endemic area for Lyme disease; in fact, people in Australia were used as negative controls in some of the USA studies. Non-endemic means 5% or less of people in Australia can have a positive diagnosis which is considered to be a false diagnosis, hence the rejection of Lyme positive tests from Australia and NZ.

Lyme disease has become a household name in the USA and Europe via the impact of the internet and Dr Google. In many blogs and opinions on various internet sites, people lacking in-depth knowledge about TBDs propagate distorted and incorrect knowledge about TBDs. An exemplary example is the distortion of the definition of Lyme disease to include all TBDs. Another example is the incorrect view that B.miyomotoi, a relapsing fever Borrelia, causes Lyme disease and belongs to the B.burgdorferi sensu lato group. This demonstrates lack of understanding of the microbiology, families (genus), genospecies, members of the genus and strains – very small changes in DNA to improve survival in the host environments. Claiming B.miyomotoi can cause Lyme disease is like claiming Mycobacterium tuberculosis can cause leprosy because Mycobacterium leprosae belongs to the same family.

A good simple explanation of the Borrelia family can be analogous to the Citrus family:

  • Kaffir Lime can be analogous to Lyme Borrelia – Kaffir Lime is a distinct citrus species.

(Lyme Borrelia = sub-species B. burgdorferi group)

  • Manadarin can be analogous to relapsing fever Borrelia – Mandarin is a distinct citrus species.

(Relapsing fever Borrelia = sub-species relapsing fever group)

  • Orange can be analogous to reptilian Borrelia – Orange is a hybrid citrus of 2 species.

(Reptilian Borrelia = Hybrid of B. burgdorferi Borrelia and relapsing fever Borrelia)

  • Grapefruit can be analogous to Australian Borrelia – Grapefruit is a new hybrid mix of a distinct citrus species and another hybrid species.

(Australian Borrelia = Hybrid of relapsing fever Borrelia and reptilian Borrelia)

There is enormous confusion about the Lyme disease causative agent: literature indicates Lyme disease has one causative agent (mono-pathogenic) but TBDs have multiple causative agents (bugs). When people claim to have Lyme disease, only one treatment agent is required, as per Koch’s postulates. If they do not get better, people demand more treatment but this contradicts Koch’s postulates. If TBD terminology is adopted, it is obvious it can be a multi-pathogenic (more than one bug) cause, so the approach to treatment would be different – broader testing and different treatment protocols. This is because a tick is a vector, a bug carrier, so it can transfer many unknown pathogens from its previous host. A tick can transfer more than Borrelia and/or the commonly known pathogens such as Bartonella, Babesia, Anaplasma, Ehrlichia, Powassan virus or tick-borne encephalitis virus. The composition of pathogens transferred can be diverse, so there should not be an assumption that if a patient is tested for Lyme disease and returns a negative result, that patient symptoms must then be psychosomatic/conversion disorder.

The logical move by the RCAP should be the adoption of a note about the limitations of Lyme disease tests on the test results sent to the clinician, commenting that it only tests for B. burgdorferi sensu stricto and excludes other Borrelia.

There needs to be a consensus on what name is adopted. DSCATT is a neutral name for now. (A change in name was recommended by the Senate committee.) Other more appropriate names for the Australian disease can be explored as research progresses.

The World Health Organisation (WHO) is the appropriate organisation to undertake an investigation into the strata or nomenclature of Borrelia, infections caused, and tick-borne diseases (vector-borne diseases). In the past, the most common global vector-borne disease has been malaria. Therefore, multi-pathogenicity of vector-borne diseases has been theoretically accepted but clinically ignored. We cannot ignore multi-pathogenic conditions anymore as they could prove to be the major contributors to the chronic disease pool globally. Currently, the cost of chronic diseases is acutely felt by developed countries: ever-increasing costs, without adequate returns to health. This is compounded by an expectation to find a cure for a disease that is merely a description of pathology, without any causative agents. The current media releases on the chelated copper based new medication for MND patients herald it as a magic bullet. This medication will only slow the progression of that subtype of MND, not cure it.  People will continue to die from MND, especially those who do not have SOD- Cu mutation. The new medication offers hope and is good news but we are still lacking cause and cure. We need not to settle for less than cause and cure, at least as aims.

Copyrighted to Dr Mualla McManus

More info about government position on Lyme Disease http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-lyme-disease.htm