Lyme Forum

Reporter: Mark Gibson

Their faces are wracked with anguish. Men, women and children, desperately ill with a disease they've been told doesn't exist. Strangers, with remarkably similar stories. Lyme disease usually starts with a tick bite. A tick with Lyme will transfer the infection through the skin, into the human blood stream. It'll move like a cork screw, often launching multiple attacks on different parts of the body. The effects can be devastating. There's often, but not always, a terrible rash. What you can't see are the headaches, fatigue, muscle pains, shortness of breath, lack of concentration and memory, sensitivity to light and noise.

So, why does no-one believe them? Well, Australian health authorities say there's no evidence that ticks here carry the infection. So most doctors won't diagnose Lyme disease, despite mounting evidence from patients who know they contracted it here. Last year, we reported on Bonnie Burns. So sick, she was barely able to walk. With Perth doctors refusing to acknowledge Lyme, Bonnie was forced overseas for treatment. Sadly, she says nothing's changed. "I'm still having seizures so at least once a month I'll head down to the local hospital because if I don't go they'll go why didn't you come down to the hospital when you had a seizure, we could've fixed you, we could've helped you out. Oh, every time I got there you make me walk back out that door, make me feel like an absolute idiot about myself, that I've got this sickness that's in my head." Bonnie says without government and medical support, patients are helpless. "We can't just keep helping ourselves with the invisible medication, the invisible money, the invisible information that we're trying to feed ourselves to give ourselves hope. The government seriously needs to get off their asses, stop worrying about stupid mining taxes and upping the GST, put that money into the medical system, seriously it's a joke."

Theda Myint is another sufferer we've reported on before. Once a broadcasting student with a bright future, Theda has been sick for 13 years, initially told she had Chronic Fatigue Syndrome. "Somebody saw the Today Tonight program and they said that girl's got Lyme disease." And she has. Like so many others, Theda had to send her blood overseas for testing. Her Mum, Carol. "The biggest thing for me is that Theda was incredibly depressed and talked all the time about taking her own life and not wanting to be alive and nothing helped in the medicines she was given anti-depressants or anything and then we're now having some treatment from a doctor in America and she's treating with pre-cursors to help the brain and Theda's depression has improved tremendously."

"I've seen just about every specialist in Perth trying to get to the bottom of why I was so unwell, this was before I had children, unfortunately I passed it on to two of my daughters and they are now very, very sick." Jenny's heartbreaking story shows what mis-information can do. "I'm really really angry, I'm gonna get upset now because if I had been treated appropriately when I was asking for help with the right anti-biotics I wouldn't have passed it on to my daughters."

There are entire families with Lyme disease and still health departments won't act. Kate says "My Mum was bitten in NSW, 27 years ago and she got the bullseye rash and because they denied it. Did she pass it onto you? Yeah. She went to the doctor with the rash and they were like I dunno, and they just sent her home and she's given it to her three children." The W.A. government maintains there's "little evidence" that Lyme occurs here and says treating people with long term anti-biotics can be "falsely reassuring" to people who believe that they have a chronic infection. But there IS hope and there are treatments available. No longer suffering in silence, this weekend they'll take to the streets, part of an international protest for Lyme disease awareness.

Perth's protest for Lyme Disease awareness:

Saturday, May 11

Perth Cultural Centre, Northbridge

12pm - 2pm

For more information on Lyme Disease:

www.karlmcmanusfoundation.org.au

www.lymedisease.org.au