disease and how people go since years of pain. this whole thing died, not a good day. the one you know, people with what it's in just a 100 days. my parents because of my family. what killed, how was 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. rhonda, my name is some way to ship me here. i'm afraid it makes me shaming history documentary stuffs. april 6th on dw, the, [000:00:00;00]

the news . here's one. there's one here, here, here that's 81 live in 130 need attract the we have this project where we're testing tx 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, it can inject the german carries right into your bloodstream, shaped like a corkscrew and coldest spiral keeps. first cousin, if this fire keeps it causes stimulus and equally illusive or disease causes centers that look like dementia, alzheimer's disease multiple sclerosis aos. meanwhile, debate is growing over the proper treatment for line disease. most cases respond to treatment, presented the objects, but others do not. whether they suffer from chronic form of the diseases on public contest, the debate among doctors, patients and insurance companies. there is a public perception, deadlines, disease, and routine. the present in the marietta with that is incorrect. right now, my hands are fired and my see the fire and every it's joyce in my body hurts.

that's line 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. and as of medications, there's a pill organizers, the oxygen as the lads, those are all full. this is what life became. i would let it all burn. just to see julie walk. as a kid, i was right. very active. i love to dance and

face the loved surviving night. those things about me started change and i knew something was wrong. never match the 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 when the school called me and they said something is seriously wrong with julie. you need to get here right away. when i got there, i found julia in the nurses office and she was just like press 2 chair and they

want 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 stop or would come to me and say, did you find anything else that we can ask 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, 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 couldn't believe 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 blue choose bullet color. the doctor insisted that this type to be conversion central. 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 act seen for my dog, but there was none for my children in. great. so the,

the main question is whether lyme disease is chronic or does it respond to the short courses of antibiotics that are reckon landlord's 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,

divisive and vicious medical debates in medicine today. the there was a medical detection story into making it deals with us writers 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, ellen steer is the newly ment rheumatologist who is 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 kind of original line disease groups have something or rach people's eyes. and he also links this to the bite of it. but as time went on,

his focus changed and dr. steer was recognized in one community as someone who was not there. if a patient thinks that they have line to seize or being treated with antibiotic therapy and are not responding. the most common reason is that they actually have another jones as lyme disease, default doctors needed guides. 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 occasion in life is wrong, but i don't want to over emphasize the fact as hard as the id s h

to solidify treat one way only the request that emerge over time. and these crafts, if you will, were you know, a doctor here, a doctor there who discovered the guidelines didn't always work or decided to return to westchester county around 1985 of the notes to me, westchester at that time was beginning to be urging 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 to get better, and then the same symptoms would start creeping back. how kind of an organism survives these antibiotics? these are 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 urologist, andrew patton, there his article was called lyme disease, the 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 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 brain imitator because the 1st grade of material was syphilis. civilized is caused by a spiral shaped organism called the trip a name and disease caused by a spiral shaped door. syphilis caused a huge variety of manifestations to mimic,

to other diseases. long siege may be the great mass greater of 1989, and that it can do almost anything. the lawn disease, fire, and 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 it the one disease bacteria really, but the door fries definitely one of the smartest bacteria on the planet. this organism knows how to change. it knows how to hide and the weight of age, the immune system. lime is more difficult to find on the blood test. in many of the conditions we're observing that patients that we strongly believe headlined disease, the standard test 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

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 age 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, 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 the it is my hot or to introduce types, keynote speaker, dr. munoz. dr. dr specter is one of the rest campers. hines is in the country. live community is so incredibly fortunate to have one of the smartest mines in research who's working towards better treatment and a camera to the line. right, this isn't just a problem in connecticut, new york, new jersey, farmington place, and it's only getting worse. it's got people at the prime of their lives or taken

out of society. and yet we have no clue what's going on with them. not coming up on the 10 years of a heart transplant, present. notice and 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 disconnect 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, i started kissing at the gathering site and 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 that i cannot live beyond a certain edge, they're 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 there. whenever it takes a few minutes after telephone call. so here in new hardest and sound, i think about that a lot in our why may sometimes you feel the pressure of having to and love your life and an extraordinary way for those people here. unfortunately, they don't, they opportunity you know, with all these unknowns, there is one now and, and lots of 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 2nd. it should be on us as medical professionals to better

understand what's going on and to help them. 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 and i couldn't control it . could do anything about it. we were struggling. elizabeth, how salary felt like an unwinnable battle?

something really extraordinary happened. the plane metal frame, frances year to new york city for the very 1st time. the only think you need like a be like shape the realtor. i understand you're finding a totally right diagnosis for 4 months, and i have a clinical diagnosis of mine. and why don't you come here today? i came here to meet the mirror. the just garner a lot of media attention. we started getting phone calls 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 started this go from the page that was very successful. we started gave the

barnabas 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 mesa, juliet had chronic lyme, her father decided to find back only to find himself wide 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 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 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 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 to like publish stuff the what are the brand names, but this vantage science articles, i sort of make these broad claims and then they make it like people like ne, here we question the testing the truth 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 real issues. we're kind of at the same as a ostracized by the very community that should be helping you. i don't think you have to have an end date. i 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

surface 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 the 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 in your body, the, i mean the side of us for cancer, this would be revolutionary in the way we diagnose. and then the way we treat the

here can i see this to me see what 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 at 15 levels 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 bite of a tech. one form of arthritis may be caused by a german or virus that's being transmitted by 6, the insects that drive and what are the areas research code at the same time in the distant future. lean 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 didn't 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 line morgan is, is arguably one of the most complex factory known to man. and be arguably,

or maybe in arguably it is the most heavily patented bacteria, man, 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 jumped 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 once 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

test less construct. the a wester bladder 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 it migrate. 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, 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 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 and liabilities published

a paper showing that despite antibiotic treatment disparities can persist when dealing with a very unique situation. here the current alignment involved to the adult teeth. are you ready for any of bacteria? we find this dandy lion phenomena. the lower is equivalent to the biology the chopped off the top. but because the root of this service through there, they can do needs trucks targeting both parts in order to more effectively sure these positions and 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 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 this big created freak that actually image for really are, and here we are, you know, 2 years later, for waiting to say that solid 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 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 could image this in the body. i think that removes, although 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 is on the oh, the starry sky. oh my gosh, are you can see the you can see a little bit as a bunch of 3 individual sit on the heart. yup. what if you could attach

a tax on swipe size saw so that's the magic to show the target for the normal to sure. this is a is like proof of concept the a perfect diagnosis in truth the and you know of an indication for everyone who has been denied and care and told that there, chris, this is like for you. it's all, it's all, it is all right there in your head and there, here the

good science will trump that behavior. and with that change happens, hopefully it won't just be at the level of, of practice of the 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. the involvement. the word chronic is there a couple of times. once you get logged disease, revise immune system doesn't deal with a 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 dogma that there is no such thing as chronic lunch industry. that 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, dad, dad, 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 love 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 before then i tell them i'm actually not angry. the i would certainly never wish what i went through on anyone but you know, in some sense i feel like it was part of the bigger plan for me.

the take about people have died and that are dying. and the people who are alone. i feel very guilty because i'm getting all this help and these people need help to feel like i'm 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.

we must spend 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 or you can't just turn people away and say there's no hope people are contacting people all the time from the i need to share this information because this is a way to get 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 demick for decades. and yet for too long, the problem has been minimized the settling. this debate is going

to be clear, a new research, new science. we need new ideas that we're interested in, people who are willing to challenge sales

the . we have an early warning in your health this morning. scientists predicted this could be the worst that lyme disease season in years. the

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