York Conference June 2004 - Dr David Owen

Q. What do you think would happen if you did the same survey with physicians as you did to patients?

Dr. Owen: I'm doing that. That's the next thing. Incidentally, I've tried to have it published and had it thrown back at me and told to make changes and separate the two elements – and I wasn't going to go along with that – and I haven't got the time to keep trying different journals to try and get it published. We need a bigger study. This was just a 100 patients, but it suggests that we clearly need something bigger.

Q. I mean asking physicians if they know what Lyme disease is.

Dr. Owen: Yes, I give lectures to doctors on Lyme disease and I have given them a questionnaire on Lyme disease...I won't go into details now...you can probably guess!!!

Q. Wouldn't a doctor not want to profess to identify the symptoms of ME as anything else because of the pressures on him? Isn't the problem that doctors will only see the illness as CFS and ME?

Dr. Owen: It took a long while for the ME and CFS diagnosis to enter mainstream, but it is now, so perhaps in the future they'll accept Lyme disease in the same way. But it will only happen through activism.

Q. Well, isn't that what patients need to do? Those people who have been wrongly identified as having ME and CFS to publicize it by letter and correspondence?

Dr. Owen: Absolutely. This is what I said last year. Because it is a symptom-based illness, patients are going to be the people who carry it forward.

David Salisbury (Lyme patient) takes the microphone:

Going back to your comments about people's awareness of what a tick looks like. I'm sure that everyone here knows what a tick looks like, but I live in Scotland. I live in a very rural community and we're surrounded by deer. We've got a large plot of land. It covers a woodland area and grass, and because of the inability to cut the grass sometimes, it gets very long. My wife does a lot of gardening. She seems to have attracted a large number of ticks and we got the first five of her in February and were of course very small ticks – the nymphs I guess. I got them off her live and have great pleasure in sticking them to masking tape. They are extremely small and I keep them as a little library because when we have friends round and we talk about Lyme disease, I say to them, "Do you know what a tick looks like?" "Oh yes," they say, "We have them off the dog. I see them often." I say, "How big do you think they are?" "Oh, quite big. You can see them quite well." So I show them the masking tape with the black dot in the middle and a magnifying glass, and they say, "Cor, I didn't realize they were that small." Frankly, I doubt that anyone who hasn't been bitten by a tick and had it removed properly, knows what a tick looks like.

Dr. Owen: Just to respond to that. These were people who had been bitten by a tick and confirmed that they'd removed the ticks.

David Salisbury: Yes, I just worry about the people who say, "We know what they look like because we have them on a cow!" And the other thing is that for some reason or other, my wife seems to collect these ticks and I don't, and we inhabit the same territory. A number of people in the village have also had tick bites, and since I know quite a few people in the village, I keep an eye on what happens to them. One lady was bitten on her arm and it was incredible. Her whole arm became scarlet – a brilliant colour – I got her to go the doctor straight away and fortunately – partly because of me – he gave her antibiotics and the rash went away and after a month she appears to be cured.

But the other thing I'm amazed at is the suggestion that - particularly if you've been out in the garden or camping – you have a shower to get rid of the tick. Well, my wife got a tick a couple of months ago. I removed it, kicking and screaming it was, and I put it onto a piece of tissue paper, and I was surprised at how quickly it ran. I caught it again. It was on a pair of tweezers. I put the tweezers under the tap and it was still clinging to the tweezers. But I'm delighted to say the water got hot enough for it to go down the plughole. Sorry, just a few comments.

Q. You talk about public awareness, but we need to be careful that we don't concentrate too much on ticks because a lot of people think, "Well, this doesn't apply to me".

Dr. Owen: That is a big problem. I think the whole concept of Lyme disease is that, "Oh, that's just an esoteric thing affecting a very very small number of people." So, I think that's true. We need to get that message across.

Q. I'm a bit confused as to whether I've now got ME or Lyme disease. Have Lyme disease people got ME, or have ME people got Lyme disease?

Dr. Owen: That's the big question. Well, this is a Lyme disease conference!

Q. It's all very well telling all our friends about Lyme disease. Our friends can't go to the doctor because our doctors don't know about it. The microbiologists who should know about it don't know about it. The neurologists who should know about it, don't know about it. How can we actually attack the top layers of the system?

Dr. Owen: That's one of the things that we should try and address in a conference like this. There's no easy way forward. I think we've all got to chip away at it, and keep having conferences like this, and eventually we'll get to them.

Q. Following on from that, I've got a diagnosis. I take it to my GP. He writes to the ID consultant and he writes back and says, "No, that's nonsense. It's a very rare illness in this country." Where do you go from there?

Dr. Owen: It's catch 22, isn't it? You are fairly stuck as an individual.

Q. It's very difficult to know how to proceed.

Dr. Owen: What I'd like to know is where are these people that should be here today, because there's no other Lyme disease meeting in the country. Why aren't they here to have the debate?

Gill Reese: And it's not that they don't know about it.

Q. What I do is advise everybody who goes to their doctor to make a copy of the ILADS treatment guidelines and to give it to your doctor and make an appointment for a few days time and ask him if he's read it and maybe he'll have another opinion about it. That's the way it should spread.

Dr. Owen: It's worth doing.

Q. (Inaudible)

Patient: There's another aspect to this. In Sweden, there's a very high awareness of Lyme, both among the general population, and among GPs. But still the treatment there is totally inadequate, so even if you get high awareness, you still end up in the same place. They know about the disease, but they still won't treat it.

Dr. Owen: Yep, there's many hurdles to overcome.

Q. This is the problem. It's a lack of understanding. An I.D. consultant has given me that injection and not been aware of the dangers involved. Although in the literature it stipulates that it should not be given with an infectious disease. So this is what we're talking about. It’s not just GPs or consultants, it's right up to medical directors who don't like to be told. And then when you also get controversy – no disrespect to the doctors here – in the beliefs within the group here, for example, with respect to co-infections – some believe, some don't.

Dr. Owen: It is difficult, especially when there is a disclaimer from Bowen. The reasons for that are quite complex.

Q. Are the doctors aware that as we are traveling around the world, we might have come into contact with whatever it was from wherever we were? Because that's what occurred to me coming back from the Ukraine. If I'd been asked by my doctor where I'd been, I would have told my doctor, he would have looked at his manual to see what infections and diseases there are there. As I subsequently found out, it's endemic there.

Dr. Owen: One of the questions that any doctor should ask an ill patient is "Where have you traveled in recent times?" It's a very basic part of the history, but it is commonly omitted in my experience.

Q. Talking about recognition in the media, have you approached 'Horizon' or any of the TV programmes?

Dr. Owen: I did that about a year ago, just through one guy I met who was involved in HIV, and he never got back to me. I think people think it's fanciful, just crazy.

Q. There was some talk about bee venom and procaine being used in Canada from the point of view that it deactivates the spirochaete. Do you know anything about that?

Dr. Owen: No, I've not heard about that.

Q. (inaudible) ...One of the side effects of the Synacthen injection is it re-activates amoebas, protozoa.

Dr. Owen: I don’t know much about that…ACTH is a very potent steroid. I've had patients with Lyme-like illnesses who've had high doses of steroids and they've become very ill.

Q. I saw a specialist. The specialists say, "They only come from deer." But how much of it is spread by the sheep population, because there's a damn sight more sheep than deer!

Dr. Owen: Absolutely. That's something that's concerned me for some time. I suppose that even sheep-dipping doesn't eradicate the problem, but it's certainly not just deer – large mammals and small mammals, birds.

Q. Well, the vector in Europe is Ixodes ricinus which we in Britain call the sheep tick. I became ill in 1997. My village post office is also a farm and there are hundreds of sheep. I got it from ticks from my dogs which I picked off. I was infected through my fingers. And they said, "That's strange," because in the summer of 97, they had never seen so many ticks on the sheep – they were crawling with ticks. And I said, "What's different? Why have you got so many ticks?" And they said, "Our law on dipping has changed. We don’t dip now, we spray, and the spray is not adequate because they're not fully submerged.

Dr. Owen: I think that's a very relevant anecdote. I think we've got to do some letter writing.

Q. It may very well be related to the abolition of sheep-dipping.

Q. I've read about mosquitoes and fleas being carriers, but it has not been mentioned.

Dr. Owen: I suspect it's not carried by air-borne vectors. Perhaps the nature of the beast is that you really need something on the ground. I think it would be too heavy for flying bugs to carry, I don't know.