Transcript for the Piece Audio version of RN Documentary: An Ode to Health and Ignorance

AN ODE TO HEALTH AND IGNORANCE - script

Intro:
Radio Netherlands Vox Humana presents ?An Ode to Health and Ignorance?.

Weary with toil, I haste me to my bed,
The dear repose for limbs with travel tired.
But then begins a journey in my head,
To work my mind when body?s works expired.
For then my thoughts from far where I abide ??(fade)

Link:
It?s been a bad day today. I have a lot of pain in the muscles, in the neck, in the back and especially in the feet and I get this strange internal shaking . It?s like standing too close to a washing machine in the spin cycle. I can feel this big build-up inside me and I know when this happens there?s a possibility of a panic attack. I just need to calm down. I know that if I listen to music, nice calming music, especially Schubert, I know it will help clam me down and distract me. And the poems, the sonnets, they go round and round in my head. And I recite them in my head, again to distract me. I have to concentrate on the poems, and the Schubert. I have to concentrate.

...(fade up). Lo, thus by day my limbs, by night my mind,
For thee, and for thyself, no quiet find.

Link:
My name is Chris Chambers and I have something called Chronic Lyme Disease. I was bitten by a tick eight years ago. I call it Chronic Lyme Disease but there are still doubts. You see, it?s one of those new diseases that?s only been discovered in the past few decades. The bacterium that causes it is perplexing and dividing the medical profession. Chronic Lyme Disease is a riddle, wrapped in a mystery, inside an enigma. So those with it suffer twice, from the pain but also from the unknown, the uncertainty and so, so much ignorance.

Introducing clips:
My name is Elizabeth Rice. Ann Maher from Ireland. Ken Ward-Atherton. Cecylia Malenchek. I?m David Philips, I?ve had it since November 1999, thirteen years now, since 1998, nearly eleven years. I became ill in 1976 with a sort of meningitis type of illness.

Link:
Now these are all people who also have the disease and who?ve all struggled for many years to try to understand precisely what it is they have and what?s causing a whole range of bizarre and debilitating symptoms.

Introduction clips:
Initially I was far too ill to try and find out what was wrong with myself and then I just crashed out.
Within two or three days I had extreme fatigue, inability to concentrate, unable to even drive a car.
Aching legs and aching arms. Went off my feet, visual problems, sweats, bones pains, muscle pains. I felt dreadful and the usual stuff, neurological tests, nothing was diagnosed.
And then I got a letter back saying all the tests are negative you?re now clear, all is well and I hope you?re feeling better and that was far from the case.
Never heard of Lyme Disease or none of my doctors did either I?m afraid.

Link:
And fighting is what we?ve all got in common. We can compare symptoms but we can also compare the frustration. There?s no gentle drawing of a curtain in this tale. It?s the slamming down of a great iron dam.

Cecylia Malenchek
You almost go into a deep despair sometimes and I honestly thought to myself that I can?t go on anymore. If this is going to happen time and time again in my life, I just can?t stand it. I can understand why some people have committed suicide. Not that I?d ever really want to but some of the symptoms are so horrendous. You can?t explain it to people who haven?t suffered this illness. They won?t understand you. ?You look fine,? they say. ?You look really well today,? and in fact you feel dreadful. Your head is bursting. You can?t think straight. You don?t know how you?re standing up, you feel exhausted, your bones are aching, your muscles are aching, you?ve got pins and needles and numbness and it?s just horrendous. It really is. But it?s only by thinking, right I?m gonna beat this and win and get through. It?s the only thing that keeps you going really.

Link:
Listen to the music and the poetry.

And indeed there will be time to wonder Do I dare? And Do I dare?
Time to turn back and descend the stair.
Do I dare disturb the universe?
In a minute there is time for decisions and revisions
which a minute will reverse.

Elizabeth Rice
You feel as if you?re in another compartment. You feel different. It?s a very odd feeling. You just feel as though you?re not quite in the human race sometimes.

Ann Maher
We really take life for granted when we?re healthy and fit and you just take everything for granted but I don?t anymore. I don?t. Life is precious. You have to appreciate every day you?re able to get up out of the bed. I reckon anyway. Because I had many days that I wasn?t.

FX Conference noise:

Link:
I?m sitting in a hall in Sheffield in the North of England and a conference on Lyme Disease is just about to start. There are many people with it sitting in the audience around me and they?re eager to hear the latest research, the new developments and new ideas about treatment for the disease. Anything, in fact that might help.

Dr. David Owen lecture:
Welcome. Welcome everyone to the fifth UK Lyme conference. So, I?ll get on now with my presentation and my lecture is entitled, Lyme disease or not Lyme disease, a case presentation?.(fade).

Link:
This is Dr. David Owen the chairman of the conference and he?s treated many people with the disease.

Dr. David Owen lecture:
?.(fade up). This is the definition as we accept at the moment of Lyme disease. An infection caused by Borrelia species, a spirochete bacteria carried by ixodes ticks. I think eventually this definition will have to change because the more I know about Lyme, the more I realise?.(fade)

Dr. David Owen
There?s a lot of knowledge about Lyme Disease but it hasn?t been disseminated yet through medical schools. And most doctors I speak to aren?t aware of the basic facts about Lyme Disease let alone the lesser known facts. I think understanding what they?re going through is a big one because many Lyme patients have very little in the way of physical signs or evidence of disease as we?re taught to see it but they do suffer terribly disabling symptoms and the full extent of their suffering just isn?t appreciated by doctors.

Cycelia Malenchek
When I realised that my GP thought that it was all in my head and I just realised that she hadn?t done any other clinical tests. She hadn?t offered any treatment and she started asking how I got on with my parents. I thought there?s something very wrong here.

Ann Maher
I was offered anti-depressants and that was just the end for me. I said there?s no way I?m taking them until someone tells me for definite, someone that knows about the disease, tells me I haven?t got it. I said that whenever I see this specialist, I come back and they say that nothing is wrong, then I?ll take the anti-depressants but not until then.

Elizabeth Rice
It?s very difficult to say I?m not really depressed. I?m depressed about the fact that nobody recognises or won?t look at the entire body and see all the symptoms together. They tend to send you away and say it?s all in your mind and this can be very distressing because you begin to think that you really are going dotty.

Ken Ward-Atherton
It started one Sunday afternoon with the most awful headache and I was driving along and I had to stop the car and throw up. In fact, I was so alarmed that I went straight to the casualty department of the hospital and they said flu. And it just went from bad to worse. Sweats, soaking wet of a night, bone pains, muscle pains, then blurred vision and then I went off my legs in about three weeks, couldn?t walk, wobbling all over the place. I went into hospital, lumbar punctures, blood tests and the interesting thing, when I went to the hospital I was having cardiac manifestations and I had an ECG done three times in one day and felt dreadful. The registrar on the ward said we thought there was a problem but it was the machine that was wrong and not you. That struck me as being a stupid thing to say. I?m trained in nursing originally so I was a registered nurse and I knew at that time, that?s why I drove to the hospital, I knew there was something dramatically got a hold of me, I felt so unwell. I was discharged with a query diagnosis of MS/viral infection and given anti-depressants to take.

I should have been a pair of ragged claws
Scuttling across the floors of silent seas.

Professor Sam Donta lecture
We don?t have good markers for this. It?s based on clinical criteria and?.(fade).

Link:
Now Professor Sam Donta has just started his talk. He?s one of the world experts on Lyme and I want to listen intently to this because he?s really the main reason why I?ve come to this conference. To hear what he has to say.

Professor Sam Donta lecture
(fade up)?..Fatigue, muscular, skeletal, nerve, cognitive including memory, concentration and then what I call the minor criteria, with all due respect to those with the symptoms, they are frequently not so minor. One has to look at the array of symptoms from headaches, disequilibrium, shortness of breath, palpitations, parasthesia, numbness, tingling, itching, burning, tremors?(fade)
Link:
It?s funny, as he?s going through the symptoms I?m thinking?yep, yep, got that, got that. Tick that off, tick that off. And you see in the audience this collective nod of recognition. And he?s been saying that he believes the Borrelia bacteria go very quickly into the nerve roots and as a consequence they disrupt the nerve signals around the whole body and that?s why we get a whole series of different symptoms.

Professor Sam Donta lecture
?.(fade up). It?s the combination of the symptoms over a period of time that leads you to spell the word Lyme and symptoms ?.(fade)

Professor Sam Donta
I think that there are two obstacles. One is that the patients have lots of symptoms. They have pain, they have numbness, they have cognitive memory problems but on physical examination they appear to be normal. There?s no abnormality and in the laboratory the traditional test for Lyme which are antibodies (looking in the bloodstream for evidence that the immune system has seen the bacteria) and in the chronic form the tests don?t reveal a whole lot. So you?re left wandering is this Lyme or is this not Lyme? So we need more tests and so physicians who encounters a patient with these symptoms and the current tests are left scratching their head and saying maybe it is stress, maybe psychosomatic. The second problem is that the physician has been educated to think about Lyme in very crisp, finite terms and they?ve been taught that we don?t know what it is but that it?s probably not Lyme. So the patient is then left dangling. Probably having Lyme or something like it that we haven?t discovered yet and getting emotional support up to a point, sympathy from physicians, being given meds to help them or to the usual which is this is stress, you?re depressed, take an anti-anxiety pill, see a psychiatrist and goodbye. I tell the patient sometimes that if you wanted to make up this you could but then you?re making up the same story that hundreds and thousands of patients are also making up. So, I think it?s beginning to coalesce into a good description of what happens and the problem is that it?s like a lab finding. You find a result that you didn?t expect and instead of investigating further you throw it out and that?s not good scientific research. And so this field has lacked good scientific research in this particular area.

Link:
So there?s a great deal to be discovered about this disease and the bacterium that causes it and yet much of the medical profession is willing to just let it pass by as though it?s an unwelcome guest at a party. Just ignore him and perhaps he?ll go away. Well, I?ve been told myself a number of times that there?s nothing with me that a psychiatrist can?t put right but it?s nice to hear thought there are some in the medical profession who seem more enlightened. Like Dr. Andrew Wright.

Dr. Andrew Wright
That?s the history of medicine. You look back at the illnesses called psychological, tuberculosis, epilepsy, schizophrenia, all thought to be psychological until the cause was found and I?m sure that in the not too distant future the same will be seen in illnesses like chronic Lyme. That once we understand things they become respectable. In medicine we do this, we have this defence mechanism whereby if we can?t explain something one way of dealing with it is to make the patient the problem. It?s their problem then and not ours. And that gives us an easy way out. We don?t do it deliberately but subconsciously. I?m sure that happens a lot, not only in medicine but in lots of professions and many patients see me unfortunately with horror stories about how they?ve been treated and how they?ve been told that it?s all in the head. People have been sectioned, children taken away from parents, one extreme and many patients say to me well, I don?t think that it is my mental state but when the seventh or eight consultant has told you that it?s your mental state, you start thinking that maybe it is. But I don?t believe it is although you can get associated psychological problems as with any chronic illness and Borrelia can cause acute mental problems. But I do think this idea that the profession has of labelling illnesses that it can?t explain as psychological has gone on for a long time and will probably continue for a long time as well until we get a change in attitude and we realise that just because you can?t explain everything it doesn?t mean the patient is making it up.

Ken Ward-Atherton
Yes, I?ve come across doctors and a few have been very unhelpful and some have been damn right arrogant and insulting even. I?d say they were in the minority. Out there, there is still hope. There are still doctors who are more switched on now and recognise it and hopefully will be able to move things forward. But a lot of medical education is required amongst practitioners. They need to get up to speed and not think that just because someone?s got the label doctor doesn?t mean they know everything. That?s what this illness has taught me. Sometimes you go to a doctor or a consultant and you think you have faith and you?re going to be OK, this is the person that knows everything and I?m afraid to say that in many cases you?re bitterly disappointed unless you get the right person.

To see a world in a grain of sand,
And a heaven in a wild flower.
Hold infinity in the palm of your hand,
And eternity in an hour.
A robin redbreast in a cage puts all of heaven in a rage.

Ann Maher
One consultation with an infectious disease specialist and he said you haven?t got Lyme Disease and if I had it I had had enough treatment. So my husband said to him, well if Ann was your mother or your sister what would you recommend to do with her if she?s so unwell? And he said well she doesn?t have Lyme Disease. I just said look, I don?t expect every doctor or consultant to know everything about every disease but I just wish that if your not sure of something that you send me to someone who does know something about it because I?m convinced that I have it. He gathered up my file, got red faced and went out the door and I never saw him after. He just totally lost it. Alright, he was standing by his principles about what he knew about Lyme but I?m the one suffering since 1995 so I reckoned I knew a bit about it too. And there?s many times that my husband and myself shed tears because we just didn?t know where to turn.

Link:
So what is this parasite that causes so many problems and yet is so difficult to detect.

Dr. Andrew Wright
It?s just been classified as a potential bio-terror agent by the US government because of its incredible abilities to escape our attempts to kill it.
It?s the most fantastically cleverly adapted bacteria there is. It can hide itself from our immune systems in ways which we probably couldn?t even begin to imagine. For most people carrying this bacteria they don?t even know that it?s there which is the ideal situation because bacteria that just want to quietly reproduce just want to be quiet. They don?t want you to attack them. What probably happens in those who become ill is that you recognise them as there and then they fight back and it?s the fight back from the bugs which makes you sick. It can change its form so it?s a shape shifter. It?s normally rather like a wiggly snake but it can go inside cells and lose its cell walls and it can hide that way because your immune system cannot recognise it without cell wall proteins. It can become a cyst which is a dormant form which can lie there for years and you never know it?s there. It can pinch pieces of membrane from white cells that are supposed to kill it and cloak itself in that membrane so that the immune system thinks it?s another white cell. It has the most incredible DNA, genetic material, which it can use very rapidly to adapt to the changing situation. If it?s under attack or something from the immune system and the body?s defences it can rapidly respond and it can disseminate deep into tissues and basically hide there where it?s safe.

Shall I compare thee to a summer?s day?
Though art more lovely and more temperate.
Rough winds do shake the darling buds of May
And summer?s lease hath all too short a date.
Sometime too hot the eye of heaven shines
And often is his gold complexion dimmed???(fade)

Cecylia Malenchek
You have to be very strong minded and it?s the times when you feel a little better and then you crash again and when you crash it?s worse than ever because you?ve had a taste of what life used to be like, almost.

??(fade up) But they eternal summer shall not fade
Nor lose possession of the fair thou owest.
Nor shall death brag thou wanderst in his shade
When in eternal lines to time thou growest?..(fade)

Cecylia Malenchek
And you really miss those old days and it?s very hard, very, very hard to get through that mentally, let alone physically.

Ann Maher
Unfortunately, I know a few people in Ireland that I believe have Lyme. They had negative tests but depression is setting in and it?s a hard way to go because if you?re not strong within yourself it?s very hard to convince others what you?ve got. To stay insistent in what you have. Unfortunately, if you get depressed and take anti depressants and you?re labelled with that. Labelled for the rest of your life as depressed and that?s it. You know then we?re doing the right thing. Getting treatment for Lyme is for us so important.

Link:
And it seems that it?s long term antibiotic treatment that is, for the moment, the best way to help relieve the symptoms. And I don?t mean a few weeks, I?m talking months and even years. And of course that?s controversial in itself. And there are so many different antibiotics. Which ones are effective? What those I?ve met have all got in common is a determination and a persistence and without it we?d all sink silently and slowly, loiterers on the fringe of life.

Ken Ward-Atherton
I don?t think you?re ever really OK. You get to a level where you can survive and do a job. I?ve continued to work over thirty years and paid for a house. When I think back I?m rather proud knowing what I know now. It?s been a struggle and it has been a struggle. It?s just a matter of soldiering on really. What can you do? I haven?t got to the point where I?ve been so depressed that I want to end it all but you do feel pretty miserable. So I?ve just had to soldier on really. On the good spells I can look back now feeling better now as I am with combination treatments. Actually it?s strange, I started taking antibiotics three months ago and I?ve heard this from friends who?ve been ill and for the first time after two weeks I had a window and I looked at the flowers around me and I felt that I?d woken up after thirty years. That?s an incredible feeling and it makes you think that life?s worth living but you do feel cheated when you get improvement just for that short time. And up to now I?m feeling much better thank goodness.

Elizabeth Rice
It?s a very long way down. I?ve really trodden the edge and I?m a very positive person and I really will, I will look for things to make me laugh to get me out of this negative attitude because you can become very low and very depressed by the constant pain and disability. I?m so lucky, you absolutely have to have a positive attitude and you have to laugh at yourself and to really tell this illness just to come along, get on with it get out of me and that sort of thing. You?ve got to enjoy life and appreciate things and it does make you appreciate things and I feel lucky that you have an antibiotic that can prevent the disease from getting worse.

Cecylia Malenchek
You get more out of life because you?ve been so ill and felt close to death very many times and when something happens, you see a beautiful flower or tree and it?s a joy and you think the air is beautiful today. Just the little things mean so much. Things that a lot of people take for granted. It?s the free things in life. Going for a walk because you can that day rather than being in bed. And even if you are in bed sometimes you think, well, at least I can read. You look at the positive side. There are a few breaks in amongst the pain.

Glut thy sorrow on a morning rose,
Or on the rainbow of the salt sand-wave,
Or on the wealth of globed peonies;
Or if thy mistress some rich anger shows,
Imprison her soft hand, and let her rave,
And feed deep, deep upon her peerless eyes.

Ann Maher
I must be a strong person deep down because my husband has got high blood pressure and medication because he couldn?t cope. I have a good attitude to life and it totally changed my life. The year before I did a mini marathon in Dublin for charity and I used to line dance and set dance and swim and just overnight all my hobbies were gone. I was in bed at eight o?clock every evening and sometimes all day. Just that I have great kids and my husband is very good and we all pull through together.

Cecylia Malenchek
You have to make a list of what?s really important in your life. You re-evaluate your life and if something makes you happy and you feel better doing it then you have to go and do it. You have to forget what other people think about you and sometimes your whole persona changes. It?s thinking positive that gets you through it.

Link:
But hopefully though, within a few years, the disease we all have will be better understood and those in the medical profession that have thrust their heads in the sand and helped dig a much bigger trench for us will recognise their errors and their ignorance. They?ll put their hands in the air and say, we were wrong.
And as Shakespeare wrote: Look what is best, that best I wish in thee.
This wish I have, then ten times happy me!

Outro:
An Ode to health and ignorance was produced and presented by Chris Chambers. Vox Humana is a Radio Netherlands presentation.

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