Tired of indifference
LYME DISEASE WENT UNDIAGNOSED FOR YEARS
OVERWHELMING, debilitating fatigue left Rebecca Vary so tired each day that she slept in her car during her lunch break just to gather enough energy to get through her afternoon workload.
With no diagnosis from doctors, her symptoms were so bad she prepared her will and prayed that whatever ailed her would take her soon.
It was not until 25 years later, in 2013, that Ms Vary said she was finally diagnosed with Lyme disease, an infectious disease caused by a tick bite.
Its symptoms include severe exhaustion, nausea, chronic muscle pain, depression, anxiety, dizziness, seizures, rash and an inability to stand.
Ms Vary said she believed she was infected in 1988 at the age of 17 while living in Carmel.
She said it was difficult for people to understand the level of fatigue experienced by sufferers.
“Imagine you slept a solid 12hour night but when your alarm goes off you can’t wake up,” she said.
“You finally get up on the fourth alarm and you manage a three-minute shower because you can’t stand for too long.
“Then you sit on the bed, soaking wet because you don’t have the energy to dry yourself. You’re too tired to move because you have used all your energy just having a shower, so you stop having a shower.
“You give up everything that you don’t have to do – your hair, showering, eating, shopping or socialising but you have to work and you have to sleep.
“I envied the miners in the Chilean mine disaster that were stuck underground because I thought that would be the best excuse available to me to be able to sleep non-stop for nine weeks and not have to explain myself to anyone.”
Ms Vary said the failure of the Australian Medical Association to recognise Lyme disease in Australia led to her being misdiagnosed with chronic fatigue syndrome, depression, lupus and fibromyalgia.
“Because of my age and sex I was dismissed by many practitioners as having symptoms that were all in my head or that I was being a drama queen or a spoilt brat,” she said.
“Patients like myself are so often denied investigations into the many potential causes of our symptoms by the swift pen movements of a script being written for antidepressants.
“I understand that medicine doesn’t have all the answers.
“But I wasn’t suffering from something that wasn’t known to medical science or for which they did not have a cure or even anything that was particularly rare.
“I suffered from a collection of infections and illnesses that were detectable and treatable.
“It’s this attitude that allowed me to continue to be sick year after year, decade after decade.”
Ms Vary said in August 2013 an Australian GP finally diagnosed her with Lyme disease.
“I travelled to Germany for treatment, which included IV antibiotics and hyperthermia, and immediately my life changed,” she said.
“The lift in symptoms in just two weeks was beyond amazing.
“Ozone treatment in Indonesia was the first glimmer of hope that I might be able to recover from my infections.”
Ms Vary entered remission in 2015, 27 years after being infected.
She said Australian doctors needed to be trained in acute tick borne infections.
“Lyme disease should be part of a differential diagnosis in patients presenting with chronic fatigue and other unexplained illnesses,” she said.
“As a volunteer with the Lyme Disease Association of Australia (LDAA) I am contacted daily by patients that need help.”
“They are going to doctor’s clinics with bullseye rashes and fatigue after a known tick bite and are told Australian ticks don’t carry disease.
“I regularly visit sick or suicidal patients and leave shaking my head that this could happen here.”
Ms Vary welcomed news that the LDAA was funding a new patient-focused pilot research study in Australia.
The project aims to test clinical samples from patients using an innovative method to diagnose vector borne infections including those from tick bites.
“In a country where 100 per cent of our livestock is not native, tiny bacteria could easily have been imported. To suggest otherwise is ludicrous,” Ms Vary said.
The AMA does not recognise Lyme disease in Australia; however, it has conceded that patients can present with suspected tick-borne illness.
It recommends general practitioners focus on individual patient symptoms rather than a label such as Lyme disease. It did not respond to requests for comment.
Rebecca Vary’s Lyme Disease went undiagnosed for 25 years, causing her years of debilitating fatigue and weakness.