Lymes Disease - Are you aware?

[~clover~]

There is a lot of controversy surrounding Lymes disease & weather or not it exists in Australia. Don't be fooled by the government, it is here!

In the town I live in, in Southern WA, there are a number of Lymes cases. Starting with 3 year old Trey (Today Tonight Lyme Toddler), who's never left the country. There are 4 or 5 adults that I know of just here in this small community who've been affected. The local footy coach being the latest diagnosed, with Lymes plus 3 other co infections.

Testing needs to be made available, & awareness needs to be raised! At the moment testing is only available outside Australia (Germany) & it costs a few thousand dollars. People 'testing' negative here are testing positive through the Germany facilities.

Neither of these cases that I've been here through have been contracted over sea's. Both were infected by a tick they got IN AUSTRALIA.

There are cases all over Australia. It is debilitating. I've now seen it.

A close friends DD was bitten by a tick over the weekend. She's just yesterday started a 3 week course of antibiotics to hopefully protect her from any infections that may have been left behind. If I hadn't have researched Lymes after moving here neither of us would've known that could've been done. I'd never heard of Lymes before moving here. Well I had, but it was never a reality, since it was an 'over sea's' thing. There is a chance that it may not work, but at least she's taking precautions others know nothing about.

It is suspected that there are people living with Lymes who have no idea they even have it. I don't think anyone realises just how wide spread it is in Australia if they've never looked it up.

It is here, & it is a horrible disease. I think posting from facebook may not be allowed, but this page has the best links to Lymes info I've seen so far, so hoping this is ok - https://www.facebook.com/LymeDiseaseAustralia

[Lisa]

I remember reading of a little girl here in Newcastle who has lymes. It was costing her family thousands of dollars for medications that she had to get from overseas. The thing that always stayed in my head was that the little girl had never left Australia. At the time my friend's daughter was showing all the symptoms of having lymes yet Dr's were not willing to test her for it as it "doesn't exist here in Australia" apparently.

[~clover~]

It might be worth getting your friend to recheck. Even if the symptoms aren't as severe now. There are doctors in Australia pushing for lymes to be acknowledged, you just have to find the right ones.
It costs thousands to be treated. About 3.5 just for the testing I think. Then the cost of meds from the US.

Trey is off the meds from the US but still on herbal meds. He's mostly back to himself, but there are still signs of it.

After being diagnosed early in the year the footy coach has just had his first week back in town. He was staying with his mum who had to give up work to care for him. He is very lucky to have the locals support or he'd have lost his home & business.
Seeing him before & during really makes it sink in.

And it goes on for years. There are people who've been living with it 10 or 15 years. Some days are great, other days they can't move.
It's misdiagnosed as so many different things. From a virus that just needs to run its course, to chronic sleeping disorders, to MS.

People have passed away from it. There were 2 kids here last year who lost their mum to it 3 or 4 years ago. She'd been sick, but no one expected her to pass. It was a huge shock for the town.

I thought it was just this area, or WA. But then I looked it up & there are people all over Australia who contracted it here.

[~Gee_Whizzy~]

yes, the medical fraternity are still in denial that Lyme Disease even exists in Australia to see how harrowing the disease is and what it can do to people, google Theda Myint. such a sad story...

[~clover~]

I did hear about theda's passing. Haven't read her story yet though. Will have to today.

[~Gee_Whizzy~]

I did hear about theda's passing. Haven't read her story yet though. Will have to today.

yeah it was very sad my mw from DD2s birth was one of Thedas best friends, which is how i came to know about her. she battled for 13 years with the disease and eventually couldn't take it anymore :/ her mum also took the story to Today Tonight in the hope of raising awareness that it does in fact exist here in Aus.

[~clover~]

Wow. I have no words. If only she'd been diagnosed & treated before she got to the stage she was at

This is why I thought I'd post here. Not sure if anyone is reading or not, but I'm hoping most will take note, & spread the word. Even without it being recognised by the government, the public needs to be aware. So they can at least seek medical assistance to try prevent the disease, with the course of antibiotics.

I can't believe it is so wide spread, but no one knows about it... No one I know has heard of it. Its scary!

[~clover~]

Bump
Getting it out there

[~Gee_Whizzy~]

honestly, until i met my mw and learnt about Theda's fight , i didn't really have much idea about Lyme Disease and how debilitating it is.

good on you for raising awareness

[AnyDream]

I kind of knew about this because I've been doing some research of peculiar sleep disorders and there are these very weird overlaps with a whole lot of conditions - fibromyalgia, ms, lupus, narcolepsy, CFS, other auto-immune thingies - and every now and again it pops up that a person finds out they actually have lyme disease - but that's o/seas where the disease is acknowledged.

[meow]

I've heard a lot about lyme disease and it's connection to many auto-immune conditions too. It's also been associated with autism and some children have had amazing recovery following lyme disease treatment.

[~clover~]

From the info I have found so far on theda, she suffered chronic fatigue for over 10 years. She spend years in pain from constant migraines & no pain relief could help her.

When she was finally diagnosed with Lyme she was too frail to be treated & was just waiting for her health to improve she never got that far.

I'm so greatful here people know to be careful. Treys mum only found out from a today tonight or 60 minute episode on Lyme, but if it wasn't for them all discussing symptoms the footy coach wouldn't have got his diagnosis as quick as he did. After seeing his dramatic weight loss I'm not sure how much further he could've gone.

[~Gee_Whizzy~]

yes the chronic fatigue was a by-product of the undiagnosed Lyme. when she wanted to initially be tested for LD, they scoffed at her and said it was "impossible" because it didn't exist here

[~clover~]

Yep. It surprised me reading so many articles right up until so recently that it was chronic fatigue. And every single specialist said it was the most extreme case they'd ever seen. Yet no one looked further. I moved here in Jan 2012. Trey was diagnosed in late 2011/early 2012 (can't remember), I can't believe someone so sick couldn't get anyone to listen, yet Trey managed to get help not long after that & pretty much straight away. Not saying Trey wasn't seriously sick, but he wasn't incapacitated. He's mostly a normal cheeky 4 year old boy now... getting up to a lot of mischief with DS

Pretty sure his mum & 2.5 year old sister have now been diagnosed too. But I can't say for sure about his sister. I don't do the rumour mill. I wait til I hear it from the person themselves.

[~Gee_Whizzy~]

yes it was really tragic the way she was treated

i'm very glad that the docs have taken Treys case seriously