When your illness isn’t “official”

The Doherty Institute in Melbourne. Photo Carla Deale.
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Having a chronic illness is difficult enough. But what happens when your ailment isn’t even recognised? Carla Deale reports.

Karen Vonhoff says she thinks “all the time” about the things she’ll do when she isn’t sick. 

“But that day never comes,” she says, “even if I’m only partially better after finding a home I don’t react to from my sickness. I am ill all day, every day, and have no real treatment.” 

Karen, now on a disability support pension and unable to work, says she suffers from Multiple Chemical Sensitivity (MCS), Chronic Inflammatory Response Syndrome (CIRS) and Lichen Planopilaris, an autoimmune condition that causes hair loss. 

She says she doesn’t have an “official diagnosis” of CIRS or MCS because of sceptical Australian doctors. 

 “I am on my own when it comes to fighting this illness,” she says.

“I have been to many doctors, and had a lot of trouble being believed. I have been openly laughed at by some of them, and some have responded with anger. I was even yelled at by one specialist, and I found that very frightening.”  

CIRS, the subject of a recent parliamentary inquiry in 2018, is a “multi-system and multi-symptom” chronic ‘biotoxin’ illness that can cause fatigue, weakness, light sensitivity, memory issues and muscle pains as well as a host of other symptoms according to the Standing Committee on Health, Aged Care and Sport.

“The Committee recommends the Department of Health conduct a review into the treatment of patients presenting with complex illnesses that are difficult to diagnose such as those with CIRS-like symptoms,” the inquiry reads.

The affliction is something Karen says she contracted from exposure to ‘toxic mould’ in a rental property in 2009, and again in a “mouldy” university room in 2015. Mould grows best in warm, wet conditions and commonly grows on indoor building materials. 

“I lived in a rental property 10 years ago that had multiple issues with water damage,” she says. 

“The roof leaked, water leaked in around the window frames and the hot water system, which was housed in the bathroom was leaking as well. I battled the real estate agent to fix these things, but nothing was ever done. I got very sick in there.” 

Karen says she had bad asthma, developed lesions, started losing my hair, had poor memory and trouble understanding print, bloodshot eyes, pelvic pain and fatigue.

“I had so many symptoms it’s hard to list them all – it’s like no part of my body was working right,” she says. 

She says following the mould exposure there are “very few buildings” or regular household items she can tolerate, having now “gone through all of [her] superannuation moving several times to avoid it.”

“Old buildings, public transport, paint, carpets, food additives, cleaning products, fragrances, plastics, even water out of the tap are all things that cause me pain, injury and disfigurement. I don’t have the same brain as I did before that incident either,” she says. 

Her condition in 2016 worsened to the degree she was “living outside of one of [her] rental properties in a swag”, which she said cost her friends, and visits to her family. 

“I can’t visit my family as I am reactive to their house, so I will be spending Christmas alone,” she says. 

The Department of Health has observed commonalities between many of the symptoms of CIRS and those associated with Lyme, a contentious disease not recognised by the Department as being contractible in Australia. 

According to the department, Lyme is an infectious disease that can be transmitted to humans if bitten by a tick carrying Borrelia burgdorferi sensu lato. It can cause ongoing joint pain, fatigue, meningitis, memory problems, irregular heartbeat and nerve problems. 

“The Australian Government recognises the existence of classical Lyme disease which is found in high rates in endemic areas, mainly the north east of the USA, some areas of Europe including the UK and some parts of Asia,” the website reads. 

“The likelihood that Australia has an indigenous form of classical Lyme disease is questionable given a causative microorganism with a competent vector is yet to be found.”

Peter Owen from the Lyme Association of Australia and the Tick Borne Illness Community Network, says he’s been sick for 16 years. 

The 60-year-old former photographer says a Borrelia Lyme test from a USA lab confirmed the disease, and then again nine months later in Germany, after being bitten by a tick overseas. 

But the confirmation came 10 years too late after falling ill. 

“My illness was triggered by the trauma of a badly broken leg, so no doctor considered investigating tick infections. I did ask early on, but the doctors had dismissed that there was Lyme in Australia”, he says. 

“I have resigned myself that I may have issues with these infections all my life, even after the latest antibiotic treatment.” 

“It’s not a usual diagnosis like cancer or a broken leg, or something you can see. Many sick people still look well and normal, but this illness is still real and debilitating.” 

Dr Katherine Gibney says Lyme Disease cannot be contracted in Australia. Photo Carla Deale.

Katherine Gibney, infectious diseases and public health physician at the Doherty Institute in Melbourne, has treated Lyme in Australian patients who have acquired their disease in an endemic country but says Lyme cannot be contracted in Australia. 

“There is no scientific evidence for Lyme Disease contracted in Australia,” she says. “The public health response has centered around the medically unexplained syndrome that goes by a variety of names, including “Lyme-like disease” and “Debilitating Symptom Complexes Attributed To Ticks (DSCATT)”. 

She says the common misdiagnosis of Lyme through specimen testing at non-NATA/non-RCPA accredited laboratories, which were stated by multiple professional bodies worldwide to ‘have not been validated to diagnose Lyme Disease’, are contributing to the growing problem of antibiotic resistance. 

“Inappropriate, prolonged, and widespread use of antimicrobials contribute to antimicrobial resistance (AMR), which has been identified by the World Health Organization (WHO) as one of the top 10 threats to global health in 2019,” she says. 

“Patients could experience side effects to these antibiotics, and might be unable to use them in the future. They can affect their normal gut microbiome, which could potentially have long-term effects on their health.” 

The places where Lyme can be contracted remains a source of contention in Australia.

Mualla McManus, founder of the Karl McManus Foundation for Tick Borne Illness Research, says that the tick-borne disease can be contracted here and advocates for “resolving controversy and eroding discrimination against sufferers and putting funds into research.” 

“Mainstream medicine is not familiar with multiple infections and are not competent at combating them,” she says. 

“Tick borne disease can be contracted in Australia. It is just that we don’t  know the pathogen profile of Australian reservoir animals, and there are many unknown pathogens like bacteria, parasites, viruses and worms in Australian animals that need to be characterized and the vectors that spread them.” 

The foundation was born following the death of Karl McManus, Mualla’s late husband, who had contracted Lyme after having been bitten by a tick in Sydney in 2007. 

“He could not find a doctor in Australia who would care and treat his neuroborreliosis,” the website reads. 

“The public health funding for chronic diseases continues to increase without much return, because the dogma that chronic diseases cannot be caused by chronic infections prevents better understanding of the infectious nature of chronic diseases,” she says. 

“Only research into the role of infections in chronic diseases will enable the clarification of  chronic diseases and enable better treatment and prevention.”

“Karl’s decline and death was due to the medical system ignoring his condition and refusing to accept he had the disease and treat him accordingly.”