on disease and if its mourners analysis thereafter, you can find it online too at www dot com. i'm clear richardson in berlin, thanks for watching the 1000000 people with what it's in just a 100 days. my power is going to be bunch of my family. what cute, how is this age? i'm on a journey to find out about the roots of the 19 are to put you on the site, but they expect to see through under my name is some way to shimmer. i'm afraid it makes sweet shaming history documentary stuffs. april 6th on dw, the,

[000:00:00;00] the, there's one, there's one here, here, here. so that's 81 live in 130, meet or drag the we have this project where we're testing text 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 air 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, it can inject the german carries right into your bloodstream, shaped like a corkscrew and coldest spiral keeps 1st cousin. if this fire keeps it causes syphilis. and equally elusive disease causes centers that look like dementia, alzheimer's disease multiple sclerosis aos. meanwhile, debate is growing over the proper treatment for lyme disease. the most cases respond to treatment was under biopics, but others do not. whether they suffer from a chronic form of the diseases on populate 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

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

it's really hard to make people understand what's at stake. it's so much more than just suffering and disease, the trucks down on your life and just turns everything upside down. front of medications 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 julia walk. as a kid, i was very,

very active. lots to dance and face love to write those things about me started change. when i knew something was wrong, and there was a match the like a week before i started, she got seriously. oh, as 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 when the school called me and they said something is seriously wrong with julie. you need to go here right away. when i got there, i found julia in the nurses office and she was just like press 2 chair 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 gave her my legs. so i took her straight to the hospital . julie 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 julia stock or would come to me and say, did you find anything else that we can test for? so i will 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, then the area around our house. there's line disease in these areas. the stories told very clearly just looking at the 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 i 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 it. no possible is not it. the sure nothing wrong in the laboratory test. and they figured she must be shaking and they just hearing that, like, i could have to leave it. like i'm having real symptoms. i was calling to say was losing my hair. fever last of proust of could you be faking fever?

the color lou choose bullet color. the doctor insisted that this tried to be conversion central. the i came to the line disease controversy as an outsider. 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 tax. i also wanted to know why i could get it back, seemed for my dog, but there was none for my children. great. so the,

the main question is whether lyme disease is chronic or does it respond to the short parcels of antibiotics that are recognized by and large, a small group of researchers and government officials basically say short courses of antibiotics cure there was another side down. i found patients who had been to 101520 doctors and they still had lingering serious symptom. edward, tired of 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.

the there was a medical detection store in the making. it deals with arthritis 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 a rach tables 9 range. and he also links this to the bite. but as time went on,

his focus changed and dr. steer was recognized in one community, someone who was not there if a patient thinks that they have line to sees are being treated with antibiotic therapy and are not responding. the most common reason is that they actually have another jones. as mine disease, default doctors needed guidance. so a group got together all the infectious diseases society of america, where they stake to 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 that back as hard as the id s h

to solidify treat one way only fewer cracks that emerge over time. and these crafts, if you will, were you know, a doctors here doctors there who discovered the guidelines didn't always work or decided to return to westchester county around 1985 or the notes need west history at that time was beginning to be a burgeoning academic 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 to get better, and then the same symptoms would start creeping back. how could an organism survive these antibiotics? these were really in the early days when we were all looking for answers. i was 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 in 1999 grapevine around just andrew patton. there his article is called lyme disease, a new greek 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 cd went away. here we have a, an infectious illness that's causing psychiatric problems. so why was lives is called a new breed imitator? because the 1st grade material was syphilis, civilized is caused by a spiral shaped organism called a triple name. and wine disease is caused by a spiral shaped or as simple as causes a huge variety of manifestations. to mimic,

to other diseases. long siege may be the 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 of the doorframe is definitely one of the smartest bacteria on the planet. this organism knows how to change. it knows how to hide and the way the rates, the immune system, lime is more difficult to find on the blood tests. and many of us clinicians were observing that patients that we strongly believe headlined disease, the standard test lines is negative. and as a result, it is easy for people to honestly, you know, confuse line for other conditions. the most common mistake,

no seats that i've seen in 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 $500000.00 cases of wine disease in america every year. there are more cases of lyme disease in a timely and breast cancer combined up 250-0000, about 10 to 20 percent will stay sick for some period. we now believe it's something on the order of 2000000 people suffer the after effects of line disease in the united states. so 50 years later,

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 describes keynote speaker docs from you specter. doctor specter is one of the breast cancer scientists in the country live community . so i had one fortunate to have one of the smartest lives in research who's working towards better treatment and a care for to our plan lives. right, this isn't just a problem in connecticut, new york, new jersey farm plans. and it's only getting worse. we've got people at the

front of their lives are taken out of society. and yet we have no clue what's going on with them. i'm coming up on 10 years of a heart transplant recipients. notice anything that 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 her transfer. the you can do all the right things in the world forever. the i just moved here to north carolina. was 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,

for an experience for me to go from taking care of cancer patients to barely being able to walk 10 yards without having to stop. we went through on our, near and 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. and so my illness that i developed arthritis and so started piecing it together and said, you know, convinced, i've 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 and if somebody 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 grow older,

i'm not gonna say in the milestones. and then i just realized, you know, are gonna just roll over and let that be the answer in a day or whatever it takes a few minutes after telephone call, say, error, new, hardest and sound. i think about that a lot in our why may sometimes you feel the pressure of having time love your life and an extraordinary way for those people here unfortunately, to announce the opportunity you know, with all these unknowns, there is one now and, and not just that people are falling through the cracks of 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. it was a very hard time for all of us. we thought we were losing julia or 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 wasn't gonna go back to work and breaking my heart because i was running everybody's life. i could, i could show it. could you anything about it? we were struggling. elizabeth, how salary felt like an unwinnable battle?

something really extraordinary happened. the plane metal frame, frances here to new york city for the very 1st time he says it's almost like unique, like a b, like shape the realtor. i understand you're fighting a tough study right for 4 months and i have a clinical diagnosis of mine. why did you come here today? i came here to i want to meet the mirror. the just garner a lot of media attention. we started getting filters from every network. this was the strangest story. vibrant, healthy, 12 year old girl, you know, suddenly like a 2nd. my life does change. mothers actually school, they've started this go from the page that was very successful. we started gave,

we bought it with 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 makes actually have chronic lyme for father decided to find back a way 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 cdc reason, way you created some of the chronic lyme conversation to fake news. you never treated julia, 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

has never had the opportunity to look at julie's medical records. and he writes, 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 online 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

tie science a like published stuff the one of the platforms with a santa science articles, i sort of make these broad claims. and then they make it like people like ne here would question the testing and the treatment and try to lump man to people who believes you know that the man doesn't exist and the girl is flat and they're deflecting and real issues. we're kind of at the same as a near ostracized, by the very community that should be helping you. i don't think you have to have an end date of think there's something wrong here. what is it that these people have in common? it can either say they all have in common that they're crazy. or you could say if

it'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 done in this country. these are ideas that i've been working on and my colleagues have been working on the counselor field for, you know, 20 plus years. and now we're finally going to be applying us to live. this is what if i told you the weekend and the wind is getting your body the, i mean it's like it is for cancer. this would be revolutionary in the way we diagnose. and then the way retrain the

here this i received your reflection. yeah, 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 you have footprints. the doctor pulls out one now and says, come back in a month, you still have 15 nails in your foot, you're gonna have paint. some of it is that the lime organism is 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 by end of the tech. one form of arthritis may be caused by a german, or virus that's being transmitted by 6. the insects that drive in wooded areas. research could at the same time in the distant future, leading to the development of a vaccine against this one form of arthritis which is being called line arthritis

the around 1980 a law called bundle was passed by don't change the patch of law to make it permissible for grand cheese 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 waited one time than just pure sciences to actually make money from their research. and it set the stage for some pretty concerning conflicts of interest. so okay, this is 1980. so guess what? 1982. that's when the really a organism was discovered. a divine morgan is, is arguably one of the most complex factory known to man. and be arguably,

or maybe in the, arguably it is the most heavily patented bacteria, man, so 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 are just not very good. it is now pumping money into developing a better blood test, a little late ex 1st day. but a recognition that what was, was a regional problem is now a national one. so in 1999 age in the cities came together for a conference in dearborn michigan to develop a standard test. but a huge backdrop was a vaccine vaccine was in development. and it would have checked the way this

test less construct. the a wester blind is a test where they actually take a bladder and on this bladder they take the drop of your blood, you're serving, they 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 the 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 of the vaccine. those 2 markers would be used to spur 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 with non testing for life or why is that important? when you take away the 31 and 34 bands, which are highly specific for a line, you're then taking away the possibility for those people who not have the vaccine to help diagnose this disease. so if you come to a doctor's office, doc, 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 their western black. and they've got 4 out of 5 bands. but your 5th band happens to be the $31.00 or $34.00. they would call that a cdc, negative western one. yet you have one 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 lyme disease. research was in 2008 when one of the world's best researchers alive, disease published

a paper showing that despite antibiotics, treatment disparities can persist when dealing with a very unique situation. here, the current alignment involved to, to knock on teeth. are you ready, kate? already, if back to area, we found this stand the lion phenomena. the lower is equivalent to the baltic, the chopped off the top. but because the roots of this are still there, the candle power needs trucks targeting both parts in order to more effectively. sure, these positions the form of the disease, the 4 years, the federal government bearing to look into the problems of compare that to private foundations which have spent something on the order of a $100000000.00 in recent years on research that today is the answer. some of the

key that warranty by the federal government, by the traditional mainstream researchers, the that we have come a long way from when the same, like a pipe dream. like yeah, wow, isn't this big, creative, freaked actually image for really out. and here we are. you know, 2 years later for waiting to say that's all and for an 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 day 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 can image this in the body. i think that removes salt out. 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 though. the . oh wow, the starry sky, look at the oh my gosh. i didn't see it so you can see a little bit as a bunch of 3 individual sit on the heart. yep. one if you could attach

a tax on this website i saw. so that's the magic chill, the target for it to normal to sure. this is a is like proof of concept the a perfect diagnosis and treatment 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 in there. has it is all it's right there in your hands and you're here the

good science will trump 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 of sign 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

a 1994 letter by alan steer. it has become increasingly apparent that the line disease fire, really bergdorf rates 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 in of the word. chronic. is there a couple of times, once you get lined disease, revise immune system doesn't deal with a terrible? well, 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 dogma that there is no such thing as chronic. truth, industry is 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, 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 that said the greatest doctors in the world weren't able to figure out what was wrong with me . but you were 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.

you are my here. oh, my greatest. and my biggest inspiration, the funny people ask me all the time. they were angry that they weren't diagnosed early on. the new kind of a for the 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 take about the people who have died and that are dying and the people who are alone and i feel very guilty because i'm getting all this help. and these people need help to are still obligated to jesus 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.

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 was you were family, you can't, you turn people away and say, there's no hope. the people are contacting people all the time from the i need to share this information because this is a wage white f, a den in the case of cove and we are accepting that there is something called the difference is they are being taken seriously. but my husband is quite damage for decades. and yet for too long, the problem has been minimized. the settling, this debate is going to require

a new research to new science. we need new ideas. that point is people who are willing to challenge the all

the we have an early warning and your health this morning scientist predicted this could be the worst at lyme disease season in years. the i'm

the mdf agent across the street in india leaving is being done by her and again, the number of times is growing. and so is the income because customers are prepared to pay more for help with the industries flourishing to take on or to the next level. we need to educate and cranes, young eco, india. in 30 minutes, d, w. little britain. in the dawn,

you fed up with the chaos of rex it in britain. this economic crisis more and more brits are moving to frames. but new beginnings can be tricky. a story of language barriers, bureaucracy, buckets, not friction. a 90 minute dw, the we say they're never giving up every weekend on the w

the, you're watching, you know, the unit was coming to you live from berlin. at least to 9 are dead and hundreds more injured after a powerful earthquake rocks. taiwan rescue cruise search for survivors after the quake topples buildings and knocked out power. the biggest quake in 25 years severely shapes the island and triggers tanami warnings in nearby countries. also coming up on the show nato as for ministers, meet them brussels aid for ukraine is at the top of the agenda with further