Facebook reminded me of a post I made two years ago. I have updated it a bit and here it is, re-posted. This blog is meant to be about writing and fun things, not medical issues. However, maybe someone else going through this shit will see it and realise that they are not crazy.
Lyme disease in Australia is a nightmare world, and very sadly, we have been involved in it for a decade. You know that nightmare you can’t really explain it to someone else? Sure, you might be able to say there was a monster, or you were being chased. However, you cannot explain the horrible feeling of the corridor you walked down in the dream because you don’t have the words, and because the corridor comes from a childhood experience you didn’t share with the person. They cannot understand the horror of butterflies, or why in the dream, that particular smile on the face of a clown terrified you, because they did not have the same creepy neighbour, or did not watch the same TV show at just the right impressionable age. The quality of the nightmare comes from our different experiences. And most people using the Australian medical system say, but its good, it helps, they care. That used to be my experience as well.
That nightmare is what it is like with Lyme Disease. Most people in Australia are used to a world where you go to a doctor and they are interested in what is going on with you. Australia is a First World nation that invests a lot of public money in health. Even if the first doctor is not very good, you can go to another doctor down the street. If things are a bit nasty, there is generally a specialist to go to. And if things are really bad, there is still a scheme to deal with it, horrible though everything is. It may not be a surprise to you that cancer is awful. You confront your own mortality. It is painful. There are great indignities with the treatment. There are many terrifying steps along the way. But there are industrial level schemes in place, a plan with every step staffed by expert doctors or nurses or other professionals, who all know exactly what to do, what comes next, and what the ultimate goal is. There is always someone you can talk to. (1) And if there is nothing they can do, someone will say it. They won’t tell you that you are imagining your illness just because they cannot treat it.
With Lyme, there might be say, twenty doctors in Australia who have any idea. One or two may be an infectious disease specialist – I’m serious. So you take your child from GP to GP, who refer them to specialists. Lyme is a multi organ, multi systemic disease, it will attack everything, but not necessarily in a predictable way. Specialists generally know only about their own organ or system. In Australia, they do not know to look for Lyme. So they end up saying: I can’t help you, there is nothing wrong in the area I work in. You’ll need to find someone else. Sorry, not my job to suggest someone. You end up where you started. Your child is getting sicker, but you’ve run out of doctors, AND THERE IS NOWHERE ELSE TO GO. There is nobody to turn to. Hospitals tell you not to come back. (A paediatrician shrugs and asks your child, “have you ever thought of killing yourself? I would, going through that sort of pain. Have you tried Berocca? (2)” You leave his surgery asking yourself, did that just happen? Did he say those words? Umm, yes. He did. And we had trusted this guy with all of our babies.)
You end up, after many years, at a particular clinic, in a particular children’s hospital. They deal only in symptoms, not causes, or so they say. You and your child need to live a normal life, they say. So Dad, you have to be the bastard in the family. You have to force your child to go to school, whether they like it or not (3). You have to show Tough Love. You have to keep pushing them, encouraging them, making them stretch themselves. They have to get on with life, despite their symptoms. Meanwhile, we’ll give the child a psychologist to help them deal with the symptoms. But that’s just what they tell you. What is really going on is that they cannot find a physical cause, so there must be a mental cause. Eventually, they say terrible, terrible things to you. You challenge them on their deception, and they unashamedly admit it. And you are angry, but you think, can they be right? Have we missed something all these years? You doubt yourself completely.
Then one day, by the grace of God and His tool, the internet, you find a doctor who knows about this disease, and you do tests – pathology tests both in Australia and Germany; tests of reactions to treatment; and clinical presentation, and you find that your child has all of these bugs in their body. Call it what you want (4). But in that mix there is borellia and babesia, bartonella, and a bunch of opportunistic parasites attacking a weakened immune system.
No amount of Tough Love was ever going to kill those bugs. The child could not force themselves to school because the bugs made them very weak and sick. All of the things you have been doing have been the opposite of what you should have been doing. You being the bastard, was simply being a bastard. It did not help one little bit. Your child has Lyme Disease which was untreated for many years. They also have a bunch of typical co-infections.
You find that many people in Europe and the US have had similar presentations and symptoms. (Later you find that many other people in Australia have as well. You are not nuts. There are many other families out there going through the exact same thing. They start to connect with each other.) Their illness was caused by the same bugs. A doctor with familiarity with that could have started treatment earlier.
Then you find that the tests that helped you are not recognised in Australia. And you find that if you go to hospital and seek treatment in an emergency, the moment you mention Lyme, weird things happen. These things have really happened to us:
- attending doctors actually stand up and leave the room (I am surprised they did not cover their ears and chant “lalalalalalalalala-can’t-hear-you-lalalalalala” as they left.) Really and truly.
- attending doctor telephones a specialist. The specialist does not leave his chair. He does not see your child. He gives a telephone “un-diagnosis”. The attending doctor tells you “We don’t accept the diagnosis you have”. He’s spent a total of say 15 minutes over a period of four hours with us. The specialist has never seen us. The other doctors have spent many, many hours with us. We have attended specialists in Germany and the Netherlands and the Czech Republic. We have spoken to specialists in the US by skype. They were all wrong. Everyone was wrong. But the man at the end of the telephone, he is right.
- We are about to obtain a surgery we need in Australia. The emergency doctor, trained overseas, recognises the symptoms, agrees with the proposed treatment. A senior doctor arrives. Like us, he is a person of a faith. We see his tzitzit hanging from beneath his shirt. We think he is here to help. He tells us that “Lyme is a bit controversial,” so we should really go to another hospital for treatment. And we should keep seeing our GP who knows about it. But we should leave this hospital. She is not about to die, so she can go home now.
- Doctors tell us we are wrong, there is no such disease here. (They ignore the contrary evidence. They also ignore that we have travelled to Europe and South East Asia.)
- A doctor took us into a private room where no one could hear her, to tell us she believes us because she has Lyme Disease too, but she can’t say anything to her colleagues as she wants to continue to practice.
- when we raised issues about strange rashes and blotches, a doctor said, “Parents are always imagining rashes that aren’t there, they probably didn’t occur”. So I pulled out my laptop loaded with photographs of the rashes. He was silent, then said, “So Dad likes gadgets, does he?”
As a sane person who has never believed in conspiracies, you find there actually is one. You find that there is politics beyond imagining behind all of this.
You wonder how you can explain all of this to people without sounding like a nut, because it is beyond their experience, they all know that doctors help people, there would be no reason for a doctor not to. (They do not have the experience of doctors denying symptoms that don’t fit facts.) And when some people say, “What, they’re still not better?” and they look at you, you feel challenged. Am I mad? Have I done enough for my children? Have I been an effective advocate for them? Is there more I could be doing? Is there another doctor I could have found? Because when all of the authority figures are lining up and telling you that you are wrong, and when what you go through goes against the experience of everyone you know, you doubt yourself. You doubt yourself all the time.
Then you think there is a breakthrough. The Commonwealth Chief Medical Officer takes an interest in Lyme-like diseases in Australia. He sets up a consultative committee. They authorise a scoping study.
The scoping study raises concerns. There are real issues with it. There are problems. You feel that you cannot begin to articulate what they are. It is the shared nightmare again. How can you explain it to these people? How can you find the words to get it across? How can you begin to say to the scientists and medical professionals, you have it wrong – you have missed the point – of more relevance is this – why are you saying those things?
And then two very sick people produce a document like this, to challenge the consensus and status quo. Despite their illness, they pick the brains of a community of desperately ill people, and they devote hundreds of hours to research and writing. Then they collapse. Then they get up again and keep going. And they collapse again. But they persist.
The document shreds the medical consensus in Australia. It shows how the clinicians are wrong, and how they have ignored the best evidence here. They articulate the nightmare world of Lyme in Australia, and even though in our house we live it every day, I shake my head and say, how can this possibly be happening? But it is, and it is probably happening to tens of thousands of people. The science clearly demonstrates the medical establishment in Australia is wrong. Studies have proven the existence of the disease in Australia
But, nothing changes. There is no plan in place for Lyme treatment, unlike the systems in place for many other serious illnesses. Denial continues. The pathologists continue to run the show. They continue to say that a positive result MUST be a false result. The infectious disease specialists say we are all idiots. We can only hope for change, and continue to work towards it.
Politicians become interested. There is a House of Representatives inquiry. There is a Senate Inquiry. Reports come out, supporting patients. But nothing is done. The Health Minister (later sacked/resigned in a scandal) does nothing.
The system is not responding. The medical establishment rouses itself for a moment, simply to go on the attack.
We carry on.
(1) we have all been there – we all have someone in our lives who has gone through this. It is scary and godawful.
(2) I guess he thought the problem was with the B – B – Bounce.
(3) That doctor seems so reasonable to your face. Then when you are not there, your child recounts how they collapsed at school, and how Dad had to come and collect them. The doctor interrupts and says, “And didn’t it feel great when Dad got you, when you left school”. Your child answers, “I was still screaming, but it was on the floor at home, not the floor at school”. The doctor dismisses them with a wave and a sneer. Apparently it was his job to be the bastard at hospital.
(4) There is war in the patient community in Australia about what to call it. It drives me insane. Apparently, if we hit on just the right name, then the doctors will have to admit, oh that, yes, we can see that you might have that. Oh, now we can treat it.