Wednesday, October 3, 2012

Although it's rarely fatal, Lyme can cause changes in the brain, produce mild or severe skin conditions and blight almost every organ in the body, from the brain to the heart. Different species of the bacteria produce different symptoms, some more arthritic, some neurological.

Early symptoms can include flu-like symptoms, joint swelling, headaches, dizziness, fatigue, depression and the distinctive erythema migrans rash, characteristically circular but not always. The rash can appear anywhere from three to 30 days after a bite, but a rash can also just indicate an allergic reaction to a tick bite.

Left untreated, the bacteria can spread through the bloodstream to joints, the heart, the nervous system and other parts of the skin. Depending on the stage, the neurological form can cause facial palsy, meningitis, shooting pains, memory loss and mood swings. Just to complicate matters, people can suffer co-infections from other parasites or bacteria carried by the same tick. This may explain why some people continue to be ill even after receiving treatment to kill off Borrelia.

Because it can look like so many other illnesses, people with Lyme often complain of having been misdiagnosed, sometimes for years, with other conditions. One of the dangers of misdiagnosis, of failing to recognise the problem is bacterial, is that patients may find themselves on drugs like immunosuppressants or steroid treatments like cortisone that can worsen bacterial infections. (Conversely, it's argued that people can be misdiagnosed with Lyme and thus not treated for the illness they actually have.)

Some Lyme advocacy groups estimate there are about 350 other illnesses it can be mistaken for, but the common ones are depression, fibromyalgia, multiple sclerosis, rheumatoid arthritis, scleroderma, motor neurone disease, Parkinson's disease, lupus and chronic fatigue syndrome - as well as flights of fancy and neurosis.

Victorian woman Rosemary Trudeau, who runs the internet site LymeOz, believes she has had Lyme for the past 22 years, 16 of them without knowing what it was. She says she ended up in a wheelchair, barely able to swallow or breathe, weighing 41 kilograms and close to death. She was variously told she had glandular fever, chronic fatigue, MS, depression. At one point she thought it might be lupus. "So I went to the GP and said, 'Can I have a test for that?' I was in my 20s and I couldn't even hold my head up. I had to rest it on his desk. But instead of doing a test for lupus, he thought I was nuts and put me in a psychiatric ward for a week. After a while I said, 'Look, I'm not crazy, I'm just sick', and they agreed and sent me home."

(Trudeau believes she contracted Lyme through an ex-partner, who had developed the EM rash after a visit to Queensland. However, there's debate about whether, like syphilis, it can be transmitted sexually, or via the placenta.)

Even conditions like ADHD and autism have been linked to Borrelia, although that research is hypothetical. Some Lyme sites tell stories of children undergoing sudden personality changes, or experiencing learning difficulties months after, for example, returning from a camping trip.

It's easy to see why a patient would rather think they had a treatable disease like Lyme than, say, an incurable one like motor neurone; everyone wants hope. But it's also possible they actually do have Lyme, or some local version. Could it be that we just haven't pinpointed the right strain of the micro-organism? Could it be that the tests we are using don't suit Australian conditions?

Mixed opinions

In medical and scientific circles it's not uncommon for opinions to differ about diagnoses depending on various research studies. In Australia, a scientific study carried out 17 years ago forms the backbone of our public-health policy on Lyme disease. That study, led by Richard Russell and Stephen Doggett, two entomologists at Westmead Hospital, the hospital now responsible for much of the diagnostic testing for borreliosis, looked at 12,000 ticks at the time and found "no conclusive evidence" Australian ticks carried spirochetes. Interviewed by The Sydney Morning Herald last year, Doggett maintained that position. "There's not one piece of scientific evidence to say Lyme occurs in Australia. There are reputations built on the existence of Lyme disease in Australia. People are embarrassed ... to admit it's not here."

However, several other reputable scientists Good Weekend spoke to had criticisms about some aspects of that mid-1990s paper. For that matter, while its conclusions were firm and the two scientists are experts in their field, the paper itself contained some provisos. Isolating the bacteria is complex and the absence of evidence is not evidence of absence.

Around that same time, a PhD student, Michelle Wills, undertook work with University of Newcastle virologist Professor Richard Barry. They found at very least "presumptive evidence", Barry says, of spirochetes in Australian ticks, as had earlier work in the 1950s. Later, in conjunction with Bernie Hudson, they carried out serological tests on more than 2000 symptomatic patients suspected of Lyme and found what appeared to be some positive results. Lack of funding meant they couldn't try to put those two pieces together: it wasn't enough to find a spirochete or find sick people - they needed to show that a spirochete caused that illness.

Barry says their findings were overshadowed by the Westmead work, which, funded by the National Health and Medical Research Council, "became the orthodoxy". And medical orthodoxy is slow to shift, notes Professor Tim Roberts, a microbiologist at the University of Newcastle who also believes Lyme exists here, persuaded by clinical evidence and the Wills/Barry work. "New discoveries in science take a long, long time to be accepted, particularly in clinical medicine. Look at the history of gastric ulcers. It took 17 years before the Royal Australasian College of GPs actually acknowledged that one should test for [the bacterium] Helicobacter pylori if someone's got an ulcer. Seventeen years!"

Researchers like Barry, Wills and Hudson think it's plausible we have an unknown strain or species of Borrelia here, which may not show up in existing tests, and even Russell and Doggett have acknowledged that possibility, although there's no hard evidence so far and, as their paper pointed out, Australia doesn't have the species of Lyme ticks found in the northern hemisphere.

But given that so many strains of Borrelia have found their way around the world, is it so unlikely it has also found its way here? Migratory birds carrying ticks are an obvious source, says Richard Barry. He points out that a common northern European strain of Borrelia, called garinii, is found in ticks carried by birds like shearwaters. "Where do shearwaters migrate in the world?" he asks rhetorically. "They come down from the northern hemisphere and, occasionally, they do a lot of dying off the east coast of NSW. They're also called muttonbirds.

"They nest in the sandhills and then prepare to fly back. If garinii occurs in the tick that infests these birds, and these birds nest along the NSW coast, and our tick population is located largely in the eastern coastal region, what if these ticks get into, say, bandicoots and set up a new ecological cycle?" When other ticks bite the infected bandicoot, they pick up the bacteria. From there, it can be passed to humans. "That scenario is more than possible. It's highly possible."

Researchers have found at least 18 varieties of Borrelia that can cause Lyme disease, and more may turn up. Different types can cause different symptoms. The US species Borrelia burgdorferi causes mainly arthritic symptoms. Borrelia garinii, one of two major strains in Europe, causes neurological symptoms, from twitching to muscle fatigue, memory loss and panic attacks. Another, afzelii, is thought to cause a severe skin condition called acrodermatitis chronica atrophicans (see Ticked Off, left).

For now, in the absence of further research, the mysteries remain. Is Lyme disease in Australia? And if so, how widespread is it? Bernie Hudson remembers being at a conference some years ago and presenting his findings of 12 or 15 positive results for Borrelia out of 150 skin biopsies he had taken from Lyme suspects. Another researcher at the conference said dismissively, "Well, that's not many." Did that comment worry him?

"It starts like this. First they say, 'No it doesn't occur.' Then they say, 'Oh, you've got some positives. All right, there's a few there.' Then they go, 'Jeez, it's more common than we thought.' And then the last thing is, 'Shit, everyone's got it.'

"No need to panic, however. It's not swine flu. Says Michelle Wills, "You've got to keep it in perspective. You don't want people to be phobic about ticks. It's like mosquitoes: you get bitten but you're not going to end up with Ross River fever unless you're very unlucky, and it's the same with Lyme. Some people are unlucky. It's just a matter of making sure there's appropriate treatment available for the unlucky ones."

The first step, however, is agreeing there's something that needs to be treated.

The enemy

Ticks are most active in spring or summer. They like humidity and can't survive very dry conditions.

Prompt removal is important. Use blunt forceps or fine tweezers, grasping the tick behind its head as close to the skin as possible, without twisting. If head or mouth parts are left, don't try to dig them out; they will drop off later. With infestations of tiny ticks (ticks at larval stage - often called, incorrectly, "grass ticks"), try a 30-minute bath with a cup of bicarbonate of soda added.

Ticked off

Ask Wayne Bowen, a NSW farmer, to describe his symptoms and he sighs. The list includes fatigue, stiffness, muscle twitches, pins and needles, sudden headaches and crushing pain, aching eyeballs, and "feeling like razor blades are slashing my heels". "I sound like a whinger, don't I?" he says.

Like many of the people Good Weekend spoke to, Bowen also suffers "brain fog" and memory loss and is highly sensitive to noise and light. A test through Australian Biologics, a private laboratory, found "something similar to" Borrelia valaisiana (a species of bacteria found in Russia and China) and Bowen believes he is also suffering from acrodermatitis chronica atrophicans (ACA), a painful skin condition associated with European Lyme disease.

Bowen has never been out of Australia, but he has been bitten often by ticks and three times developed the telltale bullseye EM rash.

The diagnosis of ACA, and of Lyme, was made by Laurieton dermatologist Peter Mayne, but Bowen says he has yet to convince his specialists. They've dismissed the positive test as unreliable. Instead, Bowen has been told he has sarcoidosis.

He says, "Sarcoidosis seems to be a last-resort diagnosis when they can't find anything else. But I've also read that it can be Lyme-related. The lady who used to live next door also had it. Sarcoidosis is a one in 20,000 disease in Australia, maybe one in 10,000. What are the odds of the woman next door having it? If you Google 'sarcoidosis and rural areas', you find it's much more prominent there. You have to wonder, well, what's out in the bush?" Ticks, for one thing.
Quoted from website:
  • AMA advise Dr's Lyme Disease is in Australia
  • Animation Video - Lyme Disease
  • AussieLyme Support Group
  • Australia Tick Alert (TAGS Inc.)
  • Borrelia Spirochaetes in blood of cattle, rodents, kangaroos, & bandicoots - MJ Mackerras
  • Does Lyme Borreliosis Exist in Australia?
  • Epidemiology & occurrence of human intestinal spirochaetes in Western Australia - Celia Josephine Brooke (2003)
  • GWI & Infection (Mycoplasma, Lyme) Study (incl. Australia War Vets) - Prof Garth Nicolson (Newcastle)
  • Insect bite & rash from Australia disables Mike Gregory (Wigan coach 2004 Challenge Cup)
  • Lizards carry ticks - Western Australia (Dumbleyung)
  • LYME a growing problem in Europe, Africa, AUSTRALIA, Asia and in America.
  • Lyme Disease in Australia - Encyclopedia Britannica
  • Lyme Disease in Australia - Sylvia Clare (Oct 2009)
  • Lyme Friends Network - LymeOz
  • Lyme Risk Management deemed not warrented to import Rodents to Zoos in Australia - CSIRO Australian Biosecurities (2008-10)

    About Me

    I am involved in fighting LYME DISEASE & other tick-borne co-infections. I am a 35 y/o Australian, no o/s travel prior to illness. Tick bite gave me a bulls-eye rash, arthritis, & a cascade of seemingly unrelated symptoms. Over a decade misdiagnosed and unaware of Lyme Disease epidemic in Australia which is currently denied by the Governments and their agencies, resulting in poor access to inaccurate tests, while simultaneously demanding patient data to change policy to fund treatment for sufferers, yet denying positive tests from international blood labs. I hope that others gain awareness from my experiences. After a year on appropriate Chronic Lyme treatment in 2010 I got my life back and was in remission on maintainance treatment working f/t. In 2013/14 doctors targeted, treatments stopped, my health crashed over and over, numerous admissions were near death. Scary trendline...

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