‘Why Sarcoidosis Lyme Australia?’

My chosen charity Sarcoidosis Lyme Australia, is very personal and close to my heart http://www.sarcoidosisaustralia.com/

Coleen Coates

Coleen Coates

There is not enough known about either diseases, here in Australia – and that’s the problem. Today I interview a very important person, my mum, Coleen.  Mum is currently winning the fight against Lyme Disease, although some days it’s a battle for her to get out of bed.

Here’s her story.

Tell us about your journey from falling ill, to being diagnosed with Lyme disease.

It was around April 2010 that I knew I had to see a doctor. I was feeling sicker and sicker. Doctor after doctor and test after test revealed nothing. They had no idea what was wrong with me. A Naturopath suggested Chronic Fatigue and put me on medication.

I knew it wasn’t that.

Finally, in my attempt to figure it all out, I came across an article on Lyme disease. I knew I had it. I had all the symptoms.

It was difficult to find anyone who knew about Lyme disease, especially testing, and I had to travel to Coffs Harbour. Australian Biologics came back with my answer.

I tested positive for Lyme.

I finally knew what was wrong. It was, in some way, a relief.

It took a long time to get to that point, though – far longer than it should have.

Why don’t doctors know about Lyme, here? Coleen Coates (2)

A small study in the nineties showed that no ticks in Australia carry Lyme disease. The government then concluded that no Lyme lives here. It’s been that way ever since.

What are your symptoms?

–          Sore throat and mouth

–          Chronic Fatigue

–          Uncomfortable fuzziness in the limbs. I have to walk around a lot, especially at night. This later turns into immobility.

–          Severe weakness

–          Loss of balance

–          Neurological – brain fog,  memory difficulties, difficulties reading and writing

–          Feeling like you’ve been poisoned

–          Without treatment, Lyme disease is fatal. I am lucky I researched and caught it. Others have not been so lucky, here in Australia. It’s an absolute tragedy, because there is medication for this disease. This disease is treatable.

 What does it take, to get proper medication?

First you have to travel to one of the three places that test for Lyme; either Coffs Harbour, the Sunshine Coast, or Sydney. The medication can be bought from the chemist but it’s extremely expensive.

If you suffer from Leprosy or Tuberculosis, you get a big discount. Lyme suffers don’t.

What message to do you have for those who read this?

The Government and health professionals of Australia need to be educated about this disease, and stop ignoring it.

If you are bitten by a tick, Lyme disease can be cured in the first two weeks of contracting it. After that, it gets into your body and is very difficult to eradicate.

Just be aware.  This is a good Q and A site. http://www.lymedisease.org.au/faq/

Thanks for reading and please take the time to SHARE and BE AWARE.

Three generations: Coleen. Hayley and Del.

Three generations: Coleen. Hayley and Del.

For the release of my novel, White Walls, I have chosen Sarcoidosis Lyme Australia as my charity. $2 from every book sale will go to them. I’m not sure what we will achieve, but just knowing about LYME is the answer.

Join the online event HERE, have some fun and win prizes.  http://www.hmcwriter.com/white-walls-launch-party/

 

WORLD PROTEST ON LYME

This is a great article about LYME AWARENESS this May.

http://worldwidelymeprotestaustralia.weebly.com/australian-landmarks-lighting-up-for-lyme.html

 

Very exciting news for us!

‘The Australian Government Chief Medical Officer, Professor Chris Baggoley, has established a Clinical Advisory Committee on Lyme disease to provide him with advice on the evidence for Lyme disease in Australia, diagnostic testing, treatment and research requirements. The Committee will also provide advice on the most appropriate ways to disseminate information to health professionals and the general public.’

Check it out: http://bellgeorge.com/australian-government-moves-on-lyme-disease/

PEACE

H.M.C

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20 thoughts on “‘Why Sarcoidosis Lyme Australia?’

  1. I have a friend with Lyme disease. I think she’s had it close to 20 years, now. Last I heard, she was doing some kind of new experimental treatment.
    We have some lizards that live near us that are immune. They’re trying to figure out why and how so that, possibly, they can be used in a treatment.

  2. Thanks for sharing Hayley – it is interesting to understand this – The symptoms sounds so similar to fibromyalgia – I can see how your mum was mis-diagnosed with chronic fatigue. Its wonderful that she followed her awesome intuition to the solution x x

    • There are so many different symptoms, too, Elysium. The Naturopath was the closet, and most concerned. Mum was brushed off by so many professionals … and Lyme wasn’t even considered. When it is considered, I think we will make progress.

  3. Yes so many are misdiagnosed with Fibromyalgia, chronic fatigue, MS, Lupus etc etc etc. I myself was diagnosed with Sarcoidosis in 1985 and Lyme in 2013 basically I’ve been sick for years.

    • Just so incredible that you are going strong, Sue. It sounds like you have been through so much.
      Keep up the amazing work with your charity. You are making a difference.

  4. I can’t even imagine how frustrating it must have been for your Mum to have no answers. Keep strong Colleen. A very worthwhile cause.

    • It was one of the hardest parts, Pam. Imagine everyone telling you, ‘we can’t find anything wrong.’ At least, we are seeing some progress with health professionals.

  5. Pingback: Wordless Wednesday – Lyme Sucks! | Morning Tempest Studios

  6. I hope that at a result of this Doctors may revisit some of the patients misdiagnosed with Fibromyalgia who are not responding to treatment. Your Mum’s research may benefit a whole lot of people there and generate more experts in the field of Lyme’s Disease. Once this is recognised as a chronic condition, maybe the Australian Government can be persuaded to make the treatment available at a discount. My Best Wishes to your Mum and Good Luck to you with your Fundraising event in June. xx Hugs xx.

    • Hi there 🙂
      She gets pretty sick 😦 She’s lost so much weight and her hair is falling out. Some days she really struggles. Last year she was responding so well, that she almost went into remission. I think a bulk of new stresses caused the Lyme to flare up again. It just goes to show that our bodies can only handle so much stress.

  7. We’ve been living with Lyme for so long here in the US that we kind of take it for granted. I’m not saying that we’re not concerned, rather the opposite, especially here in the northeast where an exploding deer population makes ticks much more common. My mother actually contracted Lyme. Thankfully she recovered fully and suffers no recurrences. I wish you the best of luck in getting the proper (and affordable) treatment for you mother.

  8. Thank you so much. Mum went to a GP today who doesn’t ‘believe’ in Lyme. Seriously? Even if they don’t think it’s here, how can you not believe in Lyme? Oh my. I told her to never go back. We’ll find the right person to help, soon enough. Awesome news about your mum!

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