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Lyme: a four letter word
Wednesday 8 January 2014
Lyme: a four letter word
Australian GPs reveal why they are risking their reputations by diagnosing patients with Lyme disease — from bacteria that are not even supposed to be in Australia. The treatment, high-dose antibiotics, is alarming health authorities and the nation's chief medical officer has formed an advisory committee to look into this controversial disease.
Di Martin investigates.
Originally broadcast 12 May 2013.
A growing number of Australian GPs are risking their professional reputations by diagnosing patients with Lyme disease.
Health authorities say there's no evidence that Australian ticks carry the Lyme bacteria, and are worried that doctors are being misled by unproven claims about this controversial disease.
Yet GPs say they are seeing patients with Lyme symptoms.
A recent conference organised by a Lyme advocacy group attracted more health professionals than even organisers expected. Thirty-three GPs attended from around Australia, joined by physios, nurses and naturopaths.
A Melbourne GP, Geoffrey Kemp, says he has 55 patients with Lyme disease, or what he calls a Lyme-like disease. Dr Julian Northover from Sydney's northern beaches said he'd seen five patients with Lyme symptoms in the last 12 months. And from Woombye on the Sunshine Coast, Dr Sandeep Gupta said he has patients with severe ongoing syndromes that don't fit with any other disease.
There are 18 different species of the Borrelia bacteria that cause Lyme disease. The bacteria have been found on all continents bar Australia and the Antarctic.
It was named after the US town of Lyme, Connecticut, where a country GP questioned an unusual cluster of juvenile rheumatoid arthritis. It was later proved to be caused by a bacterial infection.
This article represents part of a larger Background Briefing investigation. Listen to Di Martin's full report on Sunday at 8.05am or use the podcast links above.
Advocacy groups say Australia may also have its own unique Borrelia species, or overseas Lyme bacteria may have been brought here by migratory birds. There are also claims that the Lyme bacteria could be the cause of chronic conditions like multiple sclerosis or even Alzheimer's. (Editor: Or that some people diagnosed with a chronic condition may actually have Lyme.)
But the medical establishment says there is simply no evidence to back up these claims.
Infectious diseases specialists warn that the medical evidence around Lyme disease is being undermined, that shoddy research and unproven claims are enveloping Lyme 'in a parallel universe of pseudoscience'.
In response, Lyme groups say there is good clinical evidence to challenge the mainstream view, and Lyme disease is a far greater health threat than is acknowledged.
If caught early, Lyme can be treated with a short course of antibiotics. But if missed, sufferers say it can have devastating impacts.
'I was very ill,' says Natalie Young, a former NSW parks ranger. 'I had lost 10 kg within two months. I was wetting my bed. I couldn't swallow properly. I couldn't breathe properly.'
She's been asked to leave NSW hospitals where staff have told her Lyme disease doesn't exist in Australia.
Ms Young says she has chronic Lyme disease. That the bacterium has evaded initial treatment, has burrowed into organs and tissues, forming cysts, and needs years of high-dose antibiotics to root out.
But it's a controversial view. America's Centre for Disease Control (CDC) says there is no evidence the Borrelia bacteria can survive a few weeks of antibiotics. That any further symptoms are not an infection to be treated with antibiotics, but something else, like permanent tissue damage or persistent inflammation.
The CDC also reports four placebo-controlled trials which found long-term antibiotics are not only ineffective, but may be dangerous.
Canberra based infectious diseases clinician and academic Professor Peter Collignon says, 'Some people want ... an antibiotic called ceftriaxone for instance which is ... one of our critically important or last-line antibiotics, and they want to take that for a year or more. Now I think the evidence for doing that is pretty flimsy.'
Professor Collignon is on several World Health Organisation panels on antibiotic resistance. Antibiotics not only affect the person who takes them, but will influence the bacteria in everyone around them.
'So what you do in one individual can be a risk to their family and more broadly the rest of the community,' Professor Collignon says.
But Ms Young says without her medications she would have died, and she is improving with treatment.
A rural GP from the mid north coast of NSW says two thirds of his Lyme patients are responding to treatment — including high-dose antibiotics. Dr Gull Herzberg says before he learned about Lyme disease it was hard to get an antibiotic out of him.
'I know that every time I use an antibiotic ... some of those organisms may survive to live another day,' he says. 'And that contributes to antibiotic resistance. I guess I have to balance the risks of that with the risks of not using antibiotics in this particular person at this time.'
Dr Herzberg is based in the country town of Bellingen, a tick infested area. He's diagnosed 130 patients with Lyme disease.
Because the Borrelia bacteria is very difficult to culture in humans, Dr Hertzberg says it's impossible to be definitive.
'I can't tell you it is because they have Lyme,' Dr Herzberg says. 'But it looks like Lyme, they have Lyme in the laboratory, I give them Lyme treatment and they get better. I would like someone to come and pull that apart and show me well why else is this person getting better.'
Lyme testing is hotly contested. Most tests check for antibodies to the bacteria. Australian tests looks for antibodies to the two main Borrelia species found overseas.
Lyme treating doctors say if a patient is infected with a local Borrelia species, it won't show up on Australian tests. But it might on the US ones which claim to be more sensitive. Patients also say their immune systems are not working properly. So they may not produce enough antibodies to show up in anything but the most sensitive test.
However, a leading Australian microbiologist says that kind of immune suppression is very rare. Stephen Graves says if a person is healthy when infected, their immune system will produce antibodies, which will show up on tests — even if that person later becomes very ill.
Australian infectious disease specialists also question the results from one key US lab where many Australian samples are being tested.
Igenex Inc in California has its own system of interpreting standard antibody tests, which it says will pick up many of the Lyme cases that other tests miss.
But an infectious diseases expert from Western Australia, Miles Beaman, says they are an inferior test.
'The reason why enthusiasts of Lyme disease send specimens overseas is because Australian laboratories who participate in quality assurance schemes supervised by national bodies have not been able to detect any positives,' he says. 'So they refer the tests overseas at great expense, to laboratories which are not subject to the same stringent licensing controls as Australian laboratories have.'
Igenex also has a chequered past. It's been investigated by state and federal authorities, and was ordered to shut down in 2001 over irregularities with documentation. Igenex paid fines of nearly $50,000.
Igenex says it is now compliant — and has been for more than a decade.
Patients who've had testing at Igenex are quick to defend the lab. Former ranger Ms Young says even though she's tested negative in Australia, Igenex picked up her illness — which was confirmed by an infectious diseases expert at Royal North Shore Hospital in Sydney.
GPs who diagnose Lyme disease are often ostracised, even though the disease can be caught overseas, and there is a possibility that Australia has its own unique Borrelia species.
'I've recently been attacked by a local colleague saying that I am a charlatan, that I'm corrupt that I should even talk to people about Lyme disease,' says Dr Trevor Cheney, also from the NSW town of Bellingen. 'And that is the level of passion out there.'
Acknowledging the high stakes involved for both the seriously ill and the rest of the community, Australia's chief medical officer has decided to step in.
Chris Baggoley has just convened a clinical advisory committee to look into Lyme disease.
'There are a lot of distressed people, it's a matter of controversy, and it's a matter where people are having very strongly held views, and they are polarised,' he says. 'Where there is controversy, and where I can get people together to look at and consider evidence, and even ask questions of what else might need to be done to help settle this, that would be of useful thing to do. And hence I'm doing it.'
UPDATE: Chief Medical Officer, Chris Baggoley provides an update on the Clinical Advisory Committee on Lyme disease. December 2013.
UPDATE: A scoping study identifying research needs for an investigation into the existence of Lyme Disease in Australia has been prepared by John Mackenzie for the Advisory Committee on Lyme disease. September 2013
UPDATE: The CDC in the USA now believes that there are 300,000 Americans diagnosed with Lyme disease each year - 10 times the number previously reported to the CDC. August 2013
Download: Scoping Study on Lyme Disease
The above originally appeared here.
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