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I went to the doctor, and she said, no you havent got lyme disease. Theres none of that around here, you know. And are doctors in denial about how patients can suffer long term . Theyre basically told, why are you making up your illness . So, i think its. Even worse than being sick is being told youre not sick. There will be a tendency to not believe the patient and tell them its in their heads. As the Climate Changes and more of us are at risk, we reveal the truth about lyme disease. They beckon pony thats right. Come on. Yeah. Calum culbert is 18. He lives with his parents and younger brothers in this beautiful part of the aberdeenshire countryside. Hes grown up loving the outdoors and two years ago, he went on a hill walk that would change his life. Like any country boy, he was well used to insect and tick bites. He never imagined being bitten by something so small could be so dangerous. Ive sort of got ticks all throughout my life. Ive always been very outdoorsy, ive always been camping, always going up hills. Calums mum, fiona, had always been very aware of ticks. Hed gone off on his duke of Edinburgh Award and he came back, and we always did tick checks. He knew hed been bitten, um, but when we did the tick check. Like i took, like, 18, 19, 20 ticks off of him so. But there was no marking, he didnt exhibit too many ill, you know, conditions or anything. He was. He seemed ok in himself for a few weeks. And then he started getting ill. I was in bed all the time, i couldnt get up, i couldnt move. Um, i just constantly. I was losing weight ridiculously quick. Um. I just. I just couldnt carry on with normal life. Three months after he fell ill, calum was tested for lyme disease. So it came back positive. It was actually on another duke of Edinburgh Award. I actually met him and said, youve got lyme disease. I couldnt do anything. My life just came to a standstill, basically. Calums lyme disease took a while to diagnose thats not unusual. Around 200 people a year in scotland are recorded with the disease. The true number is thought to be much higher. I was one of the lucky ones. I love the outdoors. Im always outside with the dog, or im outdoors with the children. But about 12 years ago, i tested positive for lyme disease. I noticed a bulls eye type rash on the back of my calf, i went to my gp, and my gp said he wouldnt take any chances. He gave me antibiotics. A few weeks later, that test came back again negative. The treatment i received from my gp was quick and successful. But ive been reading about a rise in lyme cases in the uk, and instances where sufferers say theyve struggled to get help. Lyme was only recorded for the first time in the 1970s, by doctors in the usa. Its on the rise here and the highlands have been identified as a hot spot for infections. This is lochaber, one of those hot spots. A good place, then, to speak to a gp who regularly sees patients with the disease. Lyme disease is an illness caused by a bacteria called, uh. Its a borrelia bacteria thats transmitted by ticks. That bacteria can be transmitted to the human and cause a whole variety of different diseases. So around about the focus of the tick bite, over about a week after the original tick bite, a rash develops and spreads and keeps on spreading. And thats the first and most obvious sign that somebody has picked up an infected tick. And if the bacteria goes deeper into the body, it can cause really quite significant illness. It can affect, primarily, the nervous system. Um, so it can start causing a paralysis. Uh, it can affect the joints. And when it gets to this stage, again, antibiotics certainly can get rid of the bacteria, but in a percentage of people, theyre left with some really quite debilitating symptoms for quite some considerable time. Its hard to believe that a tiny tick can cause such Serious Health problems. And it turns out there are far more of them around us than we might think. Here on loch lomonds eastern banks, i met dr lucy gilbert. She brought a blanket along, but we werent going for a picnic. So, im going to take this little square of blanket material, and im going to walk through the vegetation for ten metres, slowly. And at the end of that, ill turn the blanket over, and see whether any ticks have attached. So, yeah, weve got a few ticks on this. And its probably about 13 degrees celsius today. Probably about 90 of the tick population are actually active today. So scottish ticks are quite hardcore, and even when its 6 degrees, about 20 of them are active. Whereas if you go to central france, if its six degrees, none of them are active, cos theyre used to the heat. Lucys interested in how Climate Change can affect tick numbers. She and her team are also looking into how [and management and deer numbers in scotland can influence how many ticks we find around us. Theres one. So this. Gosh, its so hard to see yes theyre tiny. Theyre only about one and a half millimetres long. But these guys are so. Look, that was so difficult to actually spot, unless you knew what you were looking for. They really are. And they can get through holes in socks, and they can hide in little crevices, in your tummy button. Youve got these three little ones. Yeah. And these were hatched about a year ago, and we call these nymphs. This is an adult female. Its the biggest type, and its got a very red abdomen. Mm. And this is the adult male, whos a bit smaller than the female, and hes black rather than red. So which ones could be infected out of these . Well, these could all be infected, but the ones that are most responsible for lyme disease cases in humans are these nymphs. And they might be infected. So, in scotland, the average infection rate of these is maybe. Maybe 3 or li of these might be infected. But, obviously, that will vary enormously depending on where you are. So, a lot of places, none of them will be infected. 0k. And theres the occasional place in scotland where maybe 20 might be infected. Lucy told me about her own brush with lyme disease. Her expertise in ticks and the Health Threat they pose held little sway with her gp. I noticed a little. A classic bulls eye rash only a little one. So i went to the doctor, and she said, no you havent got lyme disease. Theres none of that around here, you know. And i said, oh, well, actually, i do work on lyme disease and ticks, and this is one of my study sites, and i do know it is around here. And she went, no, no, no, im not going to treat you. And i got sort of flu like symptoms, and joint aches, and strange sensations on my skin. And, eventually, iwent back to the doctors, and there was a nice, young locum doctor, and he said, oh, well, id better refer you to the hospital and they gave me a month of intravenous antibiotics, and luckily, that did clear it up, very well. So, im fine now. It must have been difficult being told you didnt have it, when, actually, you knew about it. It was really frustrating, because i knew i had it. Id found a tick on me, i knew it was the right type of tick. It had been on for at least21i hours. It was from an area where i knew other people had got lyme disease previously. Id got the bulls eye rash, which is supposed to be diagnostic. So, it was frustrating, yes. Getting a diagnosis of lyme disease can be a complicated business. Morven may maccallum fell ill suddenly when she was iii. She says it changed her life. I was hugely into mountain biking, horse riding. Id go up munros at the weekend. I was in training for climbing up the mountain, morven, up in caithness. And, you know, iwasjust. I was one of these really annoying people who never, ever stopped i just kept going. I wasjust. I just bounced everywhere. All that changed when what started off feeling like the flu became more serious. Id fall asleep in the school bus, and i would come home and id just collapse in a heap on the couch, and. I literally got up, went to school and collapsed in utter exhaustion each day. And it got to the point where i had to leave school at 16, because by the time i got home from school each day, i was so weak, i couldnt physically walk. Her doctors believed she was suffering from Chronic Fatigue syndrome. Then a neighbour who had lyme disease intervened. Theyd seen me struggling to walk, and they said to my mother, have you considered lyme disease . And she really. Researched this, and she presented that research to the doctors and to the specialists that i saw, and they refused again to accept that it could be lyme disease, because all my blood tests kept coming back as being negative. So how was it confirmed as lyme disease . Well, i went to a private clinic down south, where theres a lyme disease specialist, and she clinically diagnosed me with lyme disease. And then she ordered blood tests, which went to america and to germany, and they came back positive with lyme disease. And from that i started my. My treatment, which has been ongoing for about nine years now. How could tests for the same infection produce such variable results . Raigmore hospital in inverness is the home of scotlands specialist Testing Centre for tick borne diseases. They collate lyme tests and data from across the country. Its head is dr roger evans. Lyme Disease Testing is complex. The disease presents in different ways. So, if you present acutely with a rash and we do our normal tests, and if thats positive with the clinical indications of a rash or a flu like illness after a tick bite, we would think its lyme disease and they would be treated. The difficulty there, of course, is, in an acute infection, the antibody response might not respond very quickly, and so the test that we use may be negative, even though the person has the disease. And so what we get is a false negative result. And that false negative result can have serious consequences. I think, for certainly a person thats been bitten by a tick, with. Within a week or two, they may have very vague symptoms or a flu like illness. And theyre not feeling terribly unwell, but they dont have the classic rash, so its not obviously identifiable by the gp. If they present and we test, and its negative, the person might think, well, i dont have lyme disease. Whereas, in fact, they may do have that. And what can happen then is, they then go on and develop the late lyme disease or other symptoms further on, and then its more difficult to diagnose possibly, and then get treatment for it. Janey cringean experienced a long delay in getting a lyme diagnosis. Shes been living with the effects of the disease since being bitten by a tick while walking in west lothian, 15 years ago. I was in bed virtually all the time. I had headaches that felt like someone had stuck a kitchen knife in the side of my head. I couldnt move for about six hours each night, because itjust was so painful with the headaches. So what does it feel like mentally . Torture. Janey had never heard of lyme disease, and it would be three years before a specialist diagnosed her as having it. But that wasnt the end of her problems. I was put on antibiotics that ended up being long term, high dose antibiotics, and i was treated for over three years by the nhs for my lyme disease. Um, the treatment only really began to be effective at five weeks in. I had a day when i had the most severe headaches, and just was in bed all day feeling awful, and then woke up the next day itjust felt like that someone had switched a light bulb on in my head. You know, it was a really dramatic, sudden improvement. And then about ten months in, i had an attempt at coming off the antibiotics, and it took five days before i crashed completely. Janeys experiences mirror those of a number of lyme disease sufferers, who say its become a long term illness, which only responds to long term antibiotic treatment. Janey pays for all these medicines privately. Theyre prescribed by a doctor who lives and works here, in dublin. Drjack lambert believes the effects of lyme disease can last far longer than current medical advice suggests. I see patients who are previously 100 well, high functioning, and two years later theyre. Nobody can figure out whats going on with them, and theyre basically told. Its put back on them. You know, are you depressed . You know . Why are you making up your illness . So i think its. Even worse than being sick is being told youre not sick. Do you think lyme disease is a chronic, long term illness . I think it is, absolutely. Um, and thats the debate in the medical community. Most medical textbooksjust describe lyme disease as, you get a tick bite, you get an acute infection, and there, thats the end of it. But i think it actually goes on to cause chronic, persistent infection. And its well documented in medical literature people ignore the fact that lyme can persist for years and years if its untreated, and then even if you treat it with short course antibiotics, um, it can. You have persistent symptoms, that is enough proof to me that, yes, it can cause chronic, persistent infection. It is reversible with antibiotics. This is a minority view among those treating lyme. Most doctors say that definitive evidence of chronic or long term lyme disease hasnt been established. Well, i think there are lots of uncertainties, lots of scientific uncertainties in ourunderstanding about the disease and how different peoples immune systems respond to a bacteria. But also, the way that peoples body responds to that infection is all about the immune response and how a body tries to fight off that infection. I think whats happening is that the bacteria is no longer there, but i think their immune system is still very active and thats where theyre getting these symptoms from, because of the activity of the immune system kind of almost the body kind of fighting itself. Now research is under way at raigmore to try to resolve this debate. The ideal would be to, for us, for example, is to devise a test that could detect active lyme disease. If we could devise that test, wed be made for life, because that would be a test, if it was a one off test, where we could try and identify that patient you have lyme disease, you need to be treated. You do not have lyme disease, you need to consider another diagnosis. And both aspects are very important, because, for those who have lyme disease, they need to be identified, and they need to be treated appropriately. For those who dont have lyme disease, another diagnosis needs to be sought, because they need to be helped. Theyre very unwell and they need to find out whats causing their disease. Until then, a patients best bet is finding a gp who knows about lyme disease. They work to uk wide guidelines set out by nice the National Institute for clinical excellence. These tell gps that the standard treatment is a. If the first is unsuccessful. If that doesnt work. And telling them the. Even after treatment. The people ive spoken to believe gps need more support in tackling lyme disease. If someones coming along to a doctor saying, ive got all these symptoms and they cant find anything wrong because they dont have the tests to cover it, then. You know, i can completely understand that its difficult, and and. There will be a tendency to not believe the patient and tell them its in their heads. But what we need to make doctors aware of is that this is a real illness, and its really, really serious, and patients need an enormous amount of support. Calum culberts mum believes doctors ought to be better at picking up clues which could lead to a lyme diagnosis. I would have thought one of the first conversations should have been along the lines of, youre very outdoorsy, you have a history of being bitten by ticks, lets give you a test. I cannot reiterate how lucky calum is to get an nhs positive test, compared to people we know who have just been left for years. I went to meet scotlands chief medical officer. I wanted to know if the government is doing enough to combat this disease. Weve got some really good resources, resources that are on the website, nhs inform, at the moment for patients and professionals. But weve developed some really good new guidelines for professionals specifically. So, i, as chief medical officer, am writing to all of the doctors in scotland, in particular to the gps, to highlight that these Educational Resources are available. They can. They can look at those themselves, but they can also point out to patients, if there are symptoms or issues to look out for, when theyre being consulted. Getting better Awareness Among doctors and the public is clearly going to be vital in tackling lyme disease. Its notjust those of us who love the countryside who need to take care. Its absolutely stunning here. Its like wild parkland, but its in the middle of a city. Youve got arthurs seat over there and holyrood park same deal. You will have deer all around here that are carrying ticks. Foxes, rabbits, birds. Even the dogs that we walk up here. Even we carry ticks. And i think its important to understand about lyme disease in scotland is that, yes, there are hot spots like uist and perthshire, but its notjust a rural problem. Weve come across cases of lyme disease that are in cities. And if you live in a city, its no guarantee that you wont be bitten by a tick. And if youre bitten by a tick, there is a chance that youll get lyme disease. Its a problem we all need to be aware of. The Scottish Government is committed to raising awareness and more research. Theres so much more we dont know, including exactly why cases have risen so much over the past 20 years. Professor Dominic Mellor heads up scotlands response to lyme and other tick borne diseases. I started working for Health Protection scotland in 2006, and even then we knew that lyme disease was a problem. But between then and 2010, the numbers of cases that were being diagnosed took a big. A fairly big jump. Its difficult to know for sure whether thats all because there were that many more cases, or whether part of that was just because people were becoming more aware. Our changing climate is one major area for future research. Climate change is an obvious thing, but i think its very difficult to predict quite whats going to happen. Probably in some areas, theyll be more common, in other areas, theyll be less common. But the Climate Change effects dont just affect the ticks, they also affect the hosts, they affect the habitat, and they affect the behaviour of the people. And when you try and put all that together and work out. Tricky certainly, my first two or three decades in practice here, i very rarely saw lyme disease, but certainly over the past five years, weve seen an increasing problem, and thats reflected notjust here in fort william, but certainly in the wider lochaber area and many other parts of highland. In conversation with our gp colleagues and other colleagues within the hospital, theyre seeing more patients, and their own observations are that theres a lot of ticks around just now, and its beginning to warm up in more ways than one. Whether you live in the city or the country, there are practical steps we can all take to reduce our risk. If we start with this one here, this is the twister type device. It looks a little bit like a claw hammer and its got a bevelled edge. And the idea is if i had a tick on the back of my hand there. Mm hm. I would kind of go along and underneath the tick, and twist and lift off. The idea of that is that youre not actually squeezing the tick. Um, this is the alternative method. This is the so called card type device. Mm hm. It is being produced by the nhs in scotland. As you see, its got a little magnifying glass on it there, so if its one of the tiny questing nymph ticks, you can see it more clearly by looking through the magnifying glass. Mm hm. And then, if its the very small ticks, you would kind of use the little bevelled edge there to kind of go underneath and then you would just lift off, and it flicks out. Mm hm. So, its similar to that, isnt it . Yes, and thats the sort of slightly larger size. And on the back is how to remove. How to remove the tick. 0k. It would be so tempting to use tweezers, though, wouldnt it . Yes. The trouble with tweezers is, everybody then uses eyebrow tweezers or domestic tweezers. There are some people who say that if you use fine pointed tweezers, theyre ok, but i think thatjust creates confusion in the public. Mm hm. And i think the plastic removal devices are much better. So im guessing youd like to see more of these in more places . Exactly, everywhere. Yeah. Yes. Its impossible not to be moved by the suffering ive heard about. Lyme disease changes lives. Its still a slow battle, getting back to what i originally felt like before i got seriously ill. Um, i still get ill quite a bit. I still struggle with getting my health back in shape. And, uh, it has been a long battle. In reality, even nine years on from having started treatment, my life is still completely dominated by this disease. Theres not a single second in which. I feel like its not in control of me, and that its not monopolising my body. The whole worlds in its infancy dealing with lyme disease. Theres so much complexity about it and so much that the scientists dont know. I feel passionate that this is something which needs to change, and ill keep pushing for it as much as i can. As patients struggle on, sometimes for years, its clear much more needs to be done to get under the skin of lyme disease. Good afternoon. As the heat and humidity rise through the weekend, that means a lot of fine and dry weather for us. But we could well see heavy showers and thunderstorms from sunday evening onwards. Back to the here and now, a pretty decent looking afternoon out there. Long spells of sunshine, 20 to 23 celsius for england and wales, 18 or 19 for scotla nd for england and wales, 18 or 19 for scotland and Northern Ireland. This evening, most of us staying dry. Some cloud moving on from the south west, through to night, it will push some rain across the far south west of england. The breeze picking appear, too, a few showers are for Northern Ireland first thing tomorrow morning. Tomorrow morning, the rain and strengthening south easterly winds putting across south west england, wales, and parts of Northern Ireland, too. For the rest of the uk, a largely dry day, temperatures as high as 2a celsius. Starting to turn quite humid. Those temperatures rise further as we have through next week, but there could be some heavy and thundery showers to accompany those higher temperatures. This is bbc news. Im lukwesa burak. The headlines at two its emerged that police were called to the home of tory leadership candidate borisjohnson and his partner on thursday night after a neighbour said she heard a loud argument. Mrjohnson and jeremy hunt will take part in the First Nationwide hustings this afternoon. We will bring you that live in an hours time. As us and irans relationship worsens a British ForeignOffice Minister will meet senior officials in iran tomorrow, to call for an urgent de escalation of tensions. Campaigners have joined Richard Ratcliffe outside the Iranian Embassy to show solidarity with him as his Hunger Strike over his detained wifes plight enters its eighth day