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tv   A Devious Disease  Deutsche Welle  April 2, 2024 6:15am-7:01am CEST

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as the, as by laws, as well says it is investigating the now you are up to date on the w use of the x, a documentary on the, the difficulty of diagnosing and treating bind disease. i been physical and you against the 1000000 people in what it's in just a 100 days my parents because of my family. what killed, how was this age? and i'm on a journey to find out about the result of 19 or to put you on the side produce the to the city rhonda. my name is some way to ship me here. i'm a student makes sleep shaming history out documentary stuffs. april 6th on dw, the
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news, there's one, there's one here, here, here. so that's 81 live. in 130 meter drive the we have this project where we're testing takes from all over the country. these are checks that are coming into contact with people there in the south. they're in the far west and that means that these things are everywhere. the, there is an epidemic disease spreading across the united states. it's called lyme disease. it's serious and can be fatal. as it digs in for a meal of blood,
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it can inject the german carries right into your bloodstream, shaped like a corkscrew and coldest spiral keeps. first cousin, if the spiral keeps it, causes syphilis, and equally elusive disease causes centers that looked like dementia, alzheimer's disease multiple sclerosis aos. meanwhile, debate is growing over the proper treatment for line disease. most cases respond to treatment was under biopics, but others do not. whether they suffer from a chronic form of the disease is a hotly contested debate among doctors, patients and insurance companies. there is a public perception that line disease can retain the present in the marietta with. that is incorrect. right now, my hands are burning my see the burden every it's joyce in my body hurts. that's
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like this. last year there were cases reported in 24 states, 37 states, 43 states, 45 states. and it may be as close as your backyard, the
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it's really hard to make people understand what's at stake. it's so much more than just suffering and disease, the types of traps down on your life and just turns everything upside down from those of navigation is a pill organizers. the oxygen, as the lads was all full, this is what life became. i would let it all burn just to see julie work as a kid, i was very, very active. i love to dance and i loved to write
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those things about me started change and i knew something was wrong. and there was a match like a week before i started to get seriously, oh, i started to notice. it was hard to go to bed in the morning. and you know, everybody has those days where they can't imagine waking up. but it was every day and it took me like an hour to get out of bed. the 2nd week and i was sick. i was just sitting in class and my legs went to the school call me and they said something is seriously wrong with julie and need to get hit right away. when i got there. i found julia in the nurses office and she was just like press 2 chair
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and they went to go notes julia, julia, julia, what's the matter? what happened? she liked that i can't see. she said i can't feel my arms and i can't feel my legs . so i took her straight to the hospital, julia was tested for everything several times, not just once and everything comes back negative. there was a very confusing time. i felt like julia was dying. so i spent a lot of time researching or symptoms. julie's doctor would come to me and say, did you find anything else that we can test for? so i would give her a list and she would run tests for everything i gave her. and again, i put in the search for julie symptoms in lyme disease comes up and i said, i have to read this. and then i started researching the area that we vacation in the area around our house. there's lyme disease in these areas. the stories
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told very clearly just looking at a medical records, you know, julia got to buy a tech when she was 9 years old. she went on diagnosed for the next 2 years. i felt like somebody threw a bucket of ice water over my head. i called josephine i call the kids come and know what she's got. she's got lines. and when the doctor came in, it was like night and day she went from being this wonderful supporting doctor, willing to try anything to adam at. no possible is not at the show, nothing wrong in the laboratory test. and they figured she must be shaking and they just hearing that, like, i couldn't believe it. like i'm having real symptoms. i was calling to say i was losing my hair. fever plastic proust. could she be faking fever?
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the color to choose bullet color? the doctor insisted that this type should be conversion central. the of the i came to the lyme disease controversy as an outside or as an investigative reporter who wanted to find out what was going on. i went into it intending to look at the trend in long disease cases. was government doing enough to control techs. i also wanted to know why i could get his accede for my dog, but there was none for my children in great, sheltered. the main question is
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whether lyme disease is chronic, does it respond to the short parcels of antibiotics that are reckoned by and large a small group of researchers and government officials basically say short courses of antibiotics. sure. there was another side down i found patients who had been to 101520 doctors and they still lingering serious symptom. edward, tired of knowing what i found after 2 or 3 stories was that i had waited into one of the most controversial devices and vicious medical debates in medicine today.
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the there was a medical detection story into making it deals with us right as and the possibility that a type of arthritis may have been uncovered, which is caused by an insect bite. the outbreak of arthritis is centered in lime, connecticut, a small town located on the connecticut river. so in the early 19 seventy's allen steer is that duly meant for metallic just to us, also study epidemiology. mainly how do we define and count diseases? in 1977, he publishes a paper on the epidemic of arthritis. dr. steer found that 25 percent of the kind of original line disease groups have something that are rich people's eyebrows. and he also links to the bike as
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a check. but as time went on, his focus changed and dr. steer was recognized in the line community, someone who was not there if a patient thinks that they have line to sees are being treated with antibiotic therapy and they're not responding. the most common reason is that they actually have another jones as lyme disease, default doctors needed guidance. so a group got together all the infectious diseases society of america, where they state their claim that this disease was not chronic. fairly benign disease is treated early. it has on occasions, been life is wrong, but i don't want to over emphasize the fact as hard as the id s h
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to solidify treat one way only. they were cracked that emerged over time. and these crafts, if you will, were you know, a doctors here and doctors there who discovered the guidelines didn't always work or decided to return to westchester county around 1985 or the notes need westchester at that time was beginning to be a burgeoning at the time, i knew virtually nothing about lyme disease. when i went into practice, i knew the name, it's about it. what i was observing was like, incredible. people get sick, you treat them, they get better, and then the same symptoms would start creeping back. how could an organism survive these antibiotics? these are really in the early days when we were all looking for answers. i was
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having a lot of patients coming into my office with poolside rashes and about 80 percent. we get better with standard antibiotics for 20 percent would not. so i would look at the guidelines, but unfortunately those guidelines were not specific enough to deal with the complexity of what i was seeing. so when i 1st was learning about lyme disease, i was really interested in an article that came out and 1999 grapevine. and relative standard tank there is article is called lyme disease, a new great imitator. and in that article, he presented 6 cases. that were fascinating was one case of an individual who had aggression helpers, a young child when he was treated the o. c. d went away here we have a, an infectious illness that's causing psychiatric problems. so why was lives he's called a new breed imitator? because the 1st created material was syphilis civilized is caused by a spiral shaped organism called the trip a name and disease caused by a spiral shaped door as simple as caused a huge variety of manifestations to mimicked other diseases. long siege may be the
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great mass greater of the 1989, and that it can do almost anything the lung disease firing key is cheaper than the corkscrew. so it drills through your joints, cartilage. it quickly leaves the bloodstream, it goes to organs, it goes to the heart and the one disease bacteria really over door fries, definitely one of the smartest bacteria on the planet. this organism knows how to change forms. it knows how to hide and the way to bates the immune system. lime is more difficult to find on the blood tests. and many of the clinicians were observing that patients that we strongly believe headlined disease, their standard tests for lenses were negative. and as a result, it is easy for people to honestly, you know, confuse line for other conditions. the most common misdiagnosis that i've seen in
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my practice or people have been diagnosed with chronic fatigue syndrome, fibromyalgia, rheumatoid arthritis lucas. multiple sclerosis is a big one. patients who have dimension alzheimer's line can imitate all of these different diseases. so it's a very, very complex organism and you really have to understand the biology to understand how to treat these patients effectively. we're now up to almost 500000 cases of one disease in america. every year. there are more cases of lyme disease and breast cancer combined up 250-0000, about 10 to 20 percent will stay sick for some period. we now believe that something on the order of 2000000 people suffer the after effects of line disease in the united states. so 50 years later,
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here we are, and we still haven't answered many of the most urgent and basic questions. chronic lyme disease is a rejected this term in american medicine. the question is why it is my hotter to introduce snipes? keynote speaker. doctor neal specter doctor spectre is one of the rest campers. scientists in the country life community is so incredibly fortunate to have one of the smartest mines in research who's working towards better treatment and a care protect the lives. right, that's a suggest a problem in connecticut, new york, new jersey, farmington plans and it's only getting worse except people at the front of their lives are taken out of society. and yet we have no clue what's
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going on with them. not coming up on the 10 years of, of, for a transfer ever since there was an evening. i'll never forget friday if the surgeon walked into my room and he said to me, you'll be done by monday night on our transplant. the you can do all the right things in the world forever. the disconnect here to north carolina is 1998. to start a new job. our daughter was 3 weeks home i had always been unbelievably healthy. i mean, i ran marathons who used to run 10 miles a day, 6 days a week. so it was a very foreign experience for me to go from taking care of cancer patients to
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barely being able to walk 10 yards without having to stop. we went through on our end as a is as loop as all the tests for negative. i completely fell through the cracks of the medical system and it wasn't until 4 years into my own that was that i developed arthritis as i started piecing it together and said, you know, i'm convinced i have lyme disease. i got a call in my office and the cardiologist said to me, is there a churn or by you know, you've got a severely damaged charge. you need to be evaluated for hard transplant. i'm not sure how i drove home just completely in tears. thinking this is a, i cannot live beyond a certain edge, are gonna see my daughter gribalder and not gonna say and the milestones. and then
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i just realized, you know, are gonna just roll over and let that be the answer. and then do whatever it takes . a few minutes after telephone call say here in new hardest and sound i think about the log in r y may sometimes you feel the pressure of having time love your life and an extraordinary way for those people here. unfortunately, they're not the opportunity you know, with all these unknowns, there is one now and, and not just that people are following through the cracks. so the medical system, the burden should not be on people who are a sect, proves that they're sec. it should be on us as medical professionals to better understand on what's going on and to help them.
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it was a very hard time for all of us. we thought we were losing julia, have nobody to take care of julia. so my wife had to make a decision. one of us had a sale. my dad decided that he was gonna kind of go back to work and freaking my heart. because i was running everybody's life. i could, i could show it could. so anything about it, we were struggling, elizabeth, how salary felt like an unwinnable battle? and then something really extraordinary happened.
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the plane metal frame francis here to new york city for the very 1st time and make a beeline street, the juliet realtor. i understand you're finding a tough study, right, diagnosed for 4 months, and i have a clinical diagnosis. why don't you come here today? i came here to meet the mirror. the she just garnered a lot of media attention. we started getting filters from every network. this is a strange, a story. vibrant, healthy, 12 year old girl, you know, suddenly like a 2nd. my life does change. mothers actually school, they started this go funny page that was very successful. we started games and part
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of the letters from all different people who has one disease around the world. we went from being alone to being like expose and you know, we didn't realize it then, but we were in the middle of a tremendous controversy. and thanks, i, julia had chronic lyme for father decided to find back only to find himself white in the middle of a mind boggling medical. there's a lot of this information out there about lyme disease treatment guidelines followed by the cvc reason, way you created some of the chronic lyme conversation to fake news. you'd ever treated julio. but he influenced many who did not too long. after that, julia was interviewed by the box 5, and i excitedly share this information with a list of my contacts. somehow, my e mail was sent to dr. phillip baker. here's another man who has never met us. he
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has never had the opportunity to look at julie's medical records, and he rides, since the results of laboratory tests for the diagnosis of lyme disease were negative, were other possibilities considered to explain such symptoms? if not, wasn't this child denied the opportunity to get the medical treatment she deserved by obsessively focusing on line disease. perhaps this is the most tragic outcome of the sad story. julia has been tested for everything under the sun several times. i guess they have their own motives for being interested in julie story. the
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tie science a like published stuff the one of the problems with this vantage science articles. i sort of make these broad claims. and then america, like people like may here would question the testing the treatment and try to lump man to people who believe, you know that the man doesn't exist in the world is flat and they're deflecting real issues. we're kind of at the same as a down here ostracized by the very junior, and i think that should be helping you. i don't think you have an m date of thing. there's something wrong here. what is it that these people have in common?
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it can either send, they all have in common that they're praising. or you can say, if there's like something else or if it's processed, the just maybe some of the 1st line science being done on this campus. and in fact, some of these projects are really the 1st to be done in this country. these are ideas that i've been working on and my colleagues have been working on the counselor field for 20 plus years. and now we're finally going to be applying us to live. this is what if i told share that we can and then wind is in your body the, i mean, just like it is for cancer. so revolutionary in the way we diagnose and then the way retrain the
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2nd. i think this to receive a, to reflect the cold when i was looking for answers for line patients, i discovered that there were multiple reasons why people stadium was like going to a doctor's office with 60 nails in your foot saying a foot thing. the doctor pulls out one now and says, come back in a month, you still at 15 nails in your foot, you're gonna have paint. some of it is that the lime organisms persisting but part of it is also other infections. right now there are at least 18 different tick borne diseases that can be transmitted by the bite of a tech. one form of arthritis may be caused by a germ or virus that's being transmitted by 6. the insects that drive and wooded areas. research could at the same time as the future leading to the development of a vaccine against this one form of arthritis which as being called line arthritis
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the around 1980 a law called bundle was passed by don't change the patch of law to make it permissible for grant, jeez, of federal funds and also some of the federal agencies themselves to benefit from patents that were required to set the stage for people who at one time didn't just pure sciences to actually make money from their research. and it set the stage for some pretty concerning conflict of interest. so okay, this is 1980. so guess what? 1982. that's when the really a organism was discovered. a july mortgages is arguably one of the most complex bacteria known to man. and be arguably,
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or maybe in arguably it is the most heavily patented bacteria, now, hello. everybody has peace. expect the study out tonight concludes lab tests for lyme disease are strikingly inaccurate. experts, a test made by more than 30 companies who jump into the business or just not very good. look at them, it is now pumping money into developing a better blood test, a little late experts, a lot of recognition that what was, was a regional problem is now a national one. so in 1990 and i age in the cities came together for a conference in dearborn michigan to develop a standard test. but the huge backdrop was a vaccine vaccine was in development. and it would have set the way this
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test less construct a wester bladder as a test where they actually take a blotter and on this bladder they take the drop of your blood. you're certainly put it on the block. it starts to move and migrate. the bacteria has proteins on the outside of its surface. and your immune system recognizes some of these specific proteins. it's like a lock in a key. if you have 5 of these specific proteins that show you've been exposed to line, you have a cdc positive west one. but what these powers of one disease decided to do was to eliminate 2 of those key markers because they weren't going to be used in the development on the vaccine. those 2 markers or the unit just for the antibody response when you got to that. so they decided they needed to remove them from the test so that if you had been vaccinated,
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non test for life or why is that important? when you take away the 3134 bands, which are highly specific for line, you're then taking away the possibility for those people who have not had the vaccine to help diagnose this disease. so if you come to a doctor's office, a dock, i got a swollen, ne, i can't walk, i'm tired, my memory is not working. i've seen 20 doctors, and they bring in the western block. and they've got 4 out of 5 bands. but your 5th span happens to be the $31.00 or $34.00. they would call that a cdc, negative western block. yet you have why disease during the 1997, all this fighting going on. and i often wondered what is going to change people's minds? what totally changed the world of blind disease research was in 2008 when
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one of the world's best researchers alive, disease published a paper showing that despite antibiotics, treatment aspire keys can persist when dealing with a very unique situation. here the current law, monday biology, the adult teeth. are you ready? kate? already effect tyria. we find this standard lion phenomena. the lower is equivalent to the any biology the chopped off the top. but because the roots of this are assumed there, the candle needs trucks targeting both parts in order to more effectively. sure, these positions the form of the disease, the 4 years, the federal government, those types of bearing to look into the problems offline to compare that to private foundations, which has got something on the order a 100000000 dollars in recent years on research that today is answering some of the
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key that warranty by the center, by the traditional mainstream researchers the we have come a long way from when the same, like a pipe dream like yeah, wow, isn't as big creative freedom actually image for really are. and here we are, you know, 2 years later we're waiting to say this all important experiment. you know, a year from now the looking at a scan of the 1st patient cutting us. hopefully the current test, you know, only continue to fuel the debate of whether a chronic sometimes are related to the persistence of living bacteria or whether they're related to or you know, some other cause you get an image this in the body. i think that i remember salt
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though, i'm not sure there's a controversy anymore. that to me is pretty definitive evidence that you've got the bacteria and you need to be treated for an act of infection. i should have all these bacteria the. yeah. the oh, the starry sky. oh my gosh. yes, you can see a little bit as a bunch of the individual this isn't the heart. yeah.
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wonder if you could attach a tax on his wife's thoughts saw as magic to kill the target to a normal tissue. this is just like proof of concept, the perfect diagnosis the and you know of an indication for everyone who has been denied care and told that there chris, this is like for you. it's all, it's all there has been around it is it's right there. and you're here the
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good science which from that behavior then with that change happens, hopefully it won't just be at the level of clinical practice, but public policy that will be insurance coverage and all the other injustices that i've really been perpetuate as well. sort of fall by the way, assign the in the beginning there was opened, there was willingness to consider lots of possibilities. but over time, doors close. when i went back and looked at some of the early scientific literature, i found a sort of familiar illness. so i'm just going to read from
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a 1994 letter by alan steer. here's the coming recently apparent that the line disease fire really burg doorframe may persist in some patients for years of particular concern. recent studies have shown that the spiral key may persist in the nervous system and may cause chronic neurologic involvement. word chronic is there a couple of times, once you get lyme disease, revise immune system doesn't deal with it. terrible. it doesn't clear that sparky from your body and you can be infected for fortunately for him at a certain point in time that became dogman, that there is no such thing as chronic lunch to treat industry that has a very scary disease. it doesn't really have to be, i think it's over emphasized how bad it can be with prompt treatments and recognition. it's not a big deal. the,
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the 16th candle i've been told is for your greatest love or even your hero. when i thought about who that one person was, one person came to mind and that was you, dad, dad, the greatest doctors in the world were unable to figure out what was wrong with me for you work. without you, i'm afraid i wouldn't be here today giving you guys a speech. thank you for holding my hands through every blood test. every scary procedure and every single part time.
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you are my here. oh, my greatest love. and my biggest inspiration, the. the funny people ask me all the time. they were angry that they weren't diagnosed early on the credit before i tell them i'm actually not angry the i would certainly never wish what i went through and anyway. but you know, in some sense, i feel like it was part of the bigger plan for me. the
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think about people have died and that are dying and the people who are alone, i feel very guilty because i'm getting this help. and these people need help to are still obligated to do this and that this needs to happen in order for there to be a change. i was a different person before line normal girl. now is the time for action.
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we must stand together as one of the people suffering right now. let us be there, boy. the can't give up because if it is you the family, you can't just turn people away and say, there's no hope the people are contacting me all the time for me. i need to share this information because this is a wage white f, a den in the case of cove and we are expecting that there is something called the difference is they are being taken seriously. but my husband is quite demick for decades. and yet, for too long, the problem has been minimized. the settling. this debate is going
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to require a new research, new science. we need new ideas that people who are willing to challenge see all the
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the we have an early warning your health this morning. scientists predicted this could be the worst at lyme disease. these in, in years. the
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india asians cross in india weaving is being done by her. and again, the number of autism is growing. and so is the income because customers are prepared to pay more for hand with the industries flourishing to take on to the next level. we need to educate and cranes, young mines, eco india. in 30 minutes, d, w 2. my name is the calls back.
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say thank you so much for training in welcome to don't hold bad. a lot of people do that. it's all about saying it aloud. you guys wouldn't being nosy. they like good everyone to ok. mark prefer, i'm sorry. check out the award winning outcome. don't call back old friends, mean friends, and nature defend itself in case of an emergency. we cannot guarantee that we could protect munich frankfurt. berlin sandwich faced with rushes or against ukraine. grace's ministry line shows weakness. can nato offer its members suspicion protection? europeans security basically depends on 90 percent on the us if it were attacked.
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what the alliance really close rang out to pot document nation starts april fools on dw, the . this is dw use and these around top sorts of rounds revolution regard says, one of the senior commanders has been killed in and is by the strike video, reiney and embassy and damascus, syria. ahmed, raised the saw. he was the top general with a ranch codes force, which overseas covert operations abroad. several other officers were killed. these by the military has declined to comment, is why the prime minister benjamin netanyahu has said he is moving to stop. that's how we use outlook.

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