Tonight’s episode of Sunday Night discussed the experience of Australian suffers of Lyme disease – a disease that Australian governments, both State and Federal, say does not exist in this country (The NSW Government Lyme disease factsheet can be found here.)
In April this year, Amara Campbell wrote a about her experience with Lyme disease and her battle to have it recognised.
This is Amara’s story…
By AMARA CAMPBELL
I have been sick my whole adult life. First taunted by a ridiculously inadequately named condition known as Chronic Fatigue Syndrome (CFS) and later by Lyme Disease and Co-infections.
Infections that, ironically, ‘do not’ exist here in Australia. Yet they do clearly, and positive tests confirmed what are primarily clinically diagnosed illnesses.
Out of nowhere I had my controversial (although widely accepted worldwide) treatment pulled from me, thanks to a governing body who purports to protect patient care and yet without warning they cut my life line. I was left adrift and dangerously ill. Without treatment within days, less than a week I had regressed so dramatically I was and am worse than I have ever been. My symptoms have flared dramatically and I live daily in a world of torture.
Daily I struggle with everything from tics, Tourette’s, seizures, convulsions, chemical allergies, excruciating bone and muscle pain, dislocated joints, loss of vision, vomiting migraines, inability to walk, loss of motor function, dementia symptoms, neurally mediated hypotension, thermodysregulation, dystonia, cataplexy, bronchial spasms, asthma and so many more symptoms to list them would take up your day. The ultimate result being that were I living with HIV or cancer and in this condition, anyone who denied me medical treatment would be abhorred for their horrific and inappropriate behaviour. It would be all over the news, the media, you would read it everywhere. Instead no one listening. Can you even imagine that this is your Australia?
My last option was a peripheral intravenous central catheter to provide me with saline and multi-vitamins to boost my immune system and at least give me a chance to fight this infection load. With a suppressed immune system and no way to fight, and no treatment. This was my last shot.
Then it failed. It was a shock to the radiologist. The first time in fifteen years apparently. He tried four times. All the main veins that lead to my heart are clogged, because my low blood volume means my blood is thick and I throw off clots.
So I let myself fall down, I’m still only on one knee… but I am not going anywhere. I will fight on for me, for my community, for awareness and for you, so you never suffer as I have.
With another dear friend I run a charity called Change for ME Australia Inc, we work to provide practical support to patients who are sick like us. Lee my co-founder is also gravely ill. So we walk (or try to) the walk. And we want for others not to have to experience what we have. Unfortunately for us illness has prevented us achieving as much as we would have liked, but I still believe in a better future for my Changers. We won’t give up.
Amara is co-founder of the charity Change for ME Australia Inc with one of her best friends Lee who is also gravely ill with complex chronic conditions.
Amara is severely disabled with multiple conditions. She first diagnosed with Myalgic Encephalomyelitis (otherwise referred to in Australia as ME/CFS) in 2001. Without the funding to be able to fully explore nor treat her illness properly, Amara’s immune system was dramatically battered and due to years of prolonged chronic illness she has developed numerous co-infections and comordities. Amara has Lyme Disease, Babesia, Weil’s Disease, indicators of Sarcoidosis, Barmah Forest Virus,Neurally Mediated Hypotension (NMH), Dysautonomia, IBS, Multiple Chemical Sensitivity (MCS), Fibromyalgia, Endometriosis, Polycystic Ovarian Syndrome (PCOS), Asthma, Bronchial Spasms, Tics, Tourette’s, Dystonia, Cyclical Vomiting Syndrome, Seizures, Cataplexy, Thermodysregulation and numerous other complications that interfere with her life and make every day complicated and challenging.
Currently her sister Marnie, a presenter on TVSN is working to raise money for Amara’s treatment through The Amara Campbell Foundation.
To follow Amara’s journey you can find her videos on youtube at Aid4Amara.
Top Comments
I have no idea why people would choose to troll and question someone's severe suffering as some on here have. Seriously, shame on you! I am disgusted at peoples lack of empathy and compassion not to mention absolute ignorance. People listen to these 'doctors' or read an article that denies evidence, and follow like lemmings and believe it to be true. Live with someone like amara and you would change your thinking. If there are 180 strains of Borrelia (Lyme disease) and Australia tests 10,000 ticks out of the millions in Aus for just ONE stain and they're all negative, what does that tell you about their 'findings'? And even if it is acquired overseas, treatment is 2 weeks of antibiotics and that is it, which DOESNOT treat the disease after infection has set in. Take it from me, I tested positive, I was sick for 8 years before being diagnosed and have been on treatment including antibiotics for 18 months so far and may now never recover due to having this bacteria in my body for so long. Amara I love you beautiful, you're suffering will not be in vein and you have a team who will continue to fight for your life. Don't give up xoxo
WOW to o_O the gutless wonder who didn't even leave their name what a horrible, heartless pathetic response to an article written by a lyme disease sufferer.
I have chronic neurological lyme and you are an ill informed moron. The CDC (whos work is NOT meant for diagnostic testing...) actually say anything past an initial course of antibiotics is Post lyme syndrome. Interestingly enough Post lyme syndrome can be cured (aka put into remission) with alternative treatments or long term antibiotic treatment. There is no post lyme symdrome there is active, dormant (remission), acute, chronic and late stage lyme. Then there is repairing from the damage the lyme has caused.
If you catch it in its acute stage you may be able to cure it with 4-6 weeks of antibiotics, this is if your lucky. If you arent you get chronic lyme and unless you get a good doctor you get no follow up and no further help. Neurologists have no idea what to do with us. Neither do a lot of other specialists, its a merry go round that you are left to rot at the end of.
Amara has late stage neurological lyme, if you can even call it that when it has infected and damaged the entire body. Emergency doctors have no idea what to do with her or other lyme sufferers when we present at the hospital. A chronic bacterial infection (no matter how severe the symptoms) is not taken seriously. Pain is dismissed, patients are given the wrong medicine (this happened to me) and we are treated like we should just get over it. There is a huge level of confusion among doctors and this is costing people their lives.
I have not been as sick, nor for as long as Amara has. She is a goddamn inspiration for putting up with the chronic, multisystemic, debilitating and serious infections that she has for as long as she has and you want her to shut up? YOU shut up. There are thousands of men, women and children of many different ages currently suffering from this disease and its coinfections and because of people like you we cant get help. Open your eyes, treatment works IF you are well enough to access it and you get help. The earlier the better.