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tv   Beyond the Headlines  ABC  August 3, 2014 10:00am-10:31am PDT

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. welcome to "beyond the headlines" i'm cheryl jennings. what do you know about lyme disease, which you can get from a tick bite. what i learned was shocking. at first the centers for disease
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control only reported about 30,000 cases a year. but new studies reveal those numbers could be far higher, as many as 300,000 cases a year. and now the centers for disease control estimates that number could be as high as 1 million cases a year. we will talk about that. our guest, amy tann, living with lyme disease. you know her, she has her new book out called "the valley of amazement." we have a little book flyer to show you about that. her life and career were derailed by lyme disease for a while. also amy's doctor joins us today, dr. ray stricker, internationally known for his work in treating lyme disease pai patients. amy, i was holding up your book, and i bet you were glad to do this because your career was
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derailed because of this. >> yes. i couldn't write, i couldn't read, i couldn't reunderstand things. >> do you remember when you first got sick? >> i got sick the day after i was infected. i didn't know i was infected, but i had the flu, the summertime flu. i had not been sick with the flu for about 15 years. i never got sick. i saw a rash, didn't have the bullseye, didn't worry about it. >> that's typically the first symptom people talk about. >> dr. stricker, you are amy's doctor. thank you for allowing us to have this conversation. what is lyme disease? >> lyme disease is a major epidemic. the cdc estimates at least 300,000 new cases a year, probably more than that, more common than breast cancer, six times more common than aids. it is a disease transmitted by
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ticks. very often poem doneople don't they were infected or had a tick bite, then they get these bizarre symptoms and it can be hard to diagnose. >> we have a picture of a tick. it's so tiny. we have a picture of a tick mouth, which is really gross. describe how small this is. >> on the left is probably an adult tick which is relatively big. the nympho tick, the most contagious, is about the size of a poppy seed. on the right is an encouraged tick, that's how big it can get when it has a lot of blood meal. >> that sounds so gross. when somebody gets sick, they have flu-like symptoms. these little mouthpieces here, they just send all kinds of things into your system. >> they do. when the tick bites you, it injects saliva into the wound t has a numbing effect, an
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anti-coagulant effect, and it can suppress the immune response so the tick can sit there for hours and feed and transmit lyme disease. >> amy, when you got sick, you started going to doctors over and over again. >> ten of them, actually. this is the problem, people don't know what to treat. they're looking only at one symptom. i had joint problems, insomnia, sleep disorder. i had problems walking. i had so many things wrong that people were looking at different things. they thought i had addison's or curbing i cushinges. i had hypoglycemia levels of 27, 31. that made them take it seriously. >> at what point did you get tested for lyme doisease? >> i was getting worked up for ms, if you can believe that. i saw this test, i said what is that. i looked it up on the internet for lyme.
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i saw the symptoms, they said that's what it is. diagnosed of diagnosed yourself. >> yes, but then i told the doctor and it came back negative. he said it is not always accurate. he said i think i have lyme. he said, no, i didn't test you for lyme. i with test you for syphilis. i thought he thinks i have syphilis? it's more likely i have that than lyme disease? i decided to look for a doctor. this is the guy i found. i got the right test, and i tested positive. i was totally relieved. >> i know it's good news and bad news. hold those thoughts. we have to take a break. we will be back in just a moment with much more from author amy
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welcome back to "beyond the
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headlines." we are talking about the silent epidemic of lyme disease. amy tan has lyme disease and her doctor, ray stricker guided her into the right treatment. i'm getting a good education. amy, i know you have long-term effects lyme disease. you've had it for how many years in. >> i've had lyme doisease for 1 years. i discovered over that time that one of my symptoms will be permanent. one of them is neuropathy in my feet, which affects my balance. it was painful for a time until i found out i needed a certain kind of medication for epilepsy which is also something i developed through lyme disease. i can't drive, but i never liked to drive any way. i can do almost anything i want now. i still have lyme disease. >> so, it's going to be with you for the rest of your life. >> i'm hoping this guy here will come up with something. he and his doctors will -- they'll develop a cure.
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>> let's talk about this. dr. stricker, you won a manhattan type project for this. it's so pervasive. >> it's so pervasive. so many people have the disease. it's been ignored by funding agencies, the federal government. we need really a manhattan project, the kind of thing that addressed aids and created all these wonderful treatments for aids. we need the same thing for lyme disease. we need national legislation to promote this research that will develop better treatments for the disease. >> you want better testing, too. >> much better testing. the xer initial tecommercial te available are terrible. they miss more than half the patients. in contrast, the testing for aids picks up more than 99% of hiv patients. we need better testing. >> amy, grateful that you have a
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diagnosis. you don't measure life by the things you can't do anymore. we will show some pictures of something you did. this is amazing to me. pictures of you swimming with gigantic sharks. >> i discovered that as my health started coming back, i was saying i'm grateful for this. i'm grateful i can make my bed. i'm grateful that i can read, that i can write this paragraph. it was through those incremental successes that i continued until i have this new definition, when you can do everything you want or almost everything, you're healthy. you may still be sick in that other way, but you have to look at your health that way. >> you set up a foundation for kids, lyme aid for kids. >> so many parents can't afford to get the test done. insurance in the past has not covered that. >> dr. stricker, before we go, a sorts of treatments work for patients? >> with early diagnosis, the
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antibiotic treatments often work, though not always. it depends if it's just lyme disease or some coinfections that are also transmitsed by ticks. if the disee is missed and not diagnosed early t could take a long course of antibiotics to get people better. that's really the challenge of treating this disease. >> amy before we go, final thoughts on what you want people to do? you're urging some action, right? >> i'm urging people to check themselves out, use prevention, see the right doctors, get the right tests, go to for those doctors who are lyme literate, to just keep at it. don't give those look look incremental changes. seize your life back. >> all right. dr. stricker, real quick? >> again, we have this wonderful tool called the internet. you can find out all kinds of things about lyme disease on the internet. i encourage people to seek that out f they're not getting better
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or good treatment, that's the place to get information. >> thank you both so much for being here, for being so open about this disease. i know you both will get calls. >> yeah. >> appreciate it. we have to take a break. coming up, a mother whose two adult children are living with lyme disease more than a decade after they were infected. and their
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it just hurts.
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♪ >> just nauseous out of my mind. back pain. it's kept my trapped. trapped in my bed. trapped in my room. ♪ >> nobody knows the horror of it. nobody knows. i'm the only one there in the middle of the night. i've been the only one there in the middle of the night for years, when one of them is throwing up in one room, the other one is unable to sleep and feels like they'll throw up in the other room. i'm going back and forth. it feels like they'll die right then. we're trying to decide whether to go to the emergency room. is this something they can help with. so many times going to the emergency room to find out they can't help. suffering is just required. there's nothing to do to relieve the suffering. >> welcome back to our discussion on lyme disease and the heavy toll it can take if
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not diagnosed quickly and properly. you heard from kate steel, the mother of two adult children suffering from lyme disease. she and her son ari are here today. your daughter aria just a little too sick to get out of bed. she'll be watching from home. >> yes. >> kate, you're a single mom. this has been a long, difficult journey for you. how old were the kids? >> 10 and 12. it's years we've been in this whirlpool of fighting lyme. >> how has ma been for you. you are working two jobs. >> i work full time, two jobs full time, because it takes one salary just to pay for the medical care and still go into tremendous debt to get the help they need. one thing i want to say is that i'm glad to be the parent of these kids. i wouldn't do it differently i think i have an opportunity to bring about some change by coming forward today. it has been a nightmare.
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it has been morning until night, sometimes up all night trying to arrange care giving for them so i can go to work. days of not having care giving and leaving coolers of food near their bed. things would stay the same with suffering but changing all the time with symptoms. not knowing where to get help. >> i want to talk to you, ari. you look great. you look wonderful. i know this has been a struggle for you to get in this state of health. take me back to that time when you were first sick. >> when i first got sick, we thought maybe it was a cold, maybe then i had the flu, because the symptoms kept growing and not going away. >> did you know you had a tick bite? >> no, i was never aware of a tick bite. i never had a bullseye rash. i just began feeling really
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sick, weak, having trouble sleeping. i was missing school. i -- >> how long did this -- this obviously went on through school and then high school, too, right? >> yes. i wasn't able to finish high school, i ended up testing out. >> how did that affect your friendships with people, because you were isolated. >> it was very isolating. my illness and symptoms got to the point where it consumed my life and every action that i took. am i stable enough to stand in the shower today? >> when did you know, finally know you had lyme disease? >> it took about five years, between my sister and i, 23 doctors doctors >> 23 doctors. >> during which time we had no specific thing to do. i was being treated for chronic fatigue. we lost friends that couldn't understand the illness. >> just getting sicker and sicker. >> mm-hmm. >> kate, how did you finally get help? >> at the beginning i asked if
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it was lyme. i was told, no, we don't have lyme in california. we were being treated by a doctor for chronic fatigue. finally after five years he said they should be better by now. let's test for lyme. so we ended up testing for lyme, finding a lyme literal doctor and opening up possibilities for treatment. >> we have to take a little break. we are going to be back in a moment. we have so much more to talk about, including the reason kate, ari and danny want to go public about what happened to them. we'll have more on the impact of lyme disease and how
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yayyyy! welcome back to "beyond the headlines." talking about lyme disease and how it can cause severe consequences if it's not diagnosed and treated properly. kate steele and her son ari are with me right now. her daughter, dani, is too ill
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to get out of bed but is watching from home. your kids were diagnosed when they were lite. just normal kids, outside doing their thing like everybody does. we don't think about the dangers of a tick bite. and they're everywhere. we have dogs, everybody is susceptible to this. >> we did a lot of hiking. we were an outdoor family. we had two dogs. the dogs slept on the bed. we picked ticks off of the dogs but didn't think anything of it. didn't occur of us to be concerned. >> and ari, because you and your sister are both ill, what is that like for you being around each other? are you able to find support for one another? >> i think the support we were able to offer each other initially was really great. it gave us a lot of strength. i think unfortunately as our illnesses progressed and got worse, we weren't able to support each other in the same way because we each needed so much individual support. >> yeah. how did you handle that
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psychologically? i know just there people in my own life, chronic illness is devastating. it's depressing. >> it is extremely depressing. i was devastated. i basically lost my life. i'm not somebody who gives up. i was not prepared to resign to spend the rest of my loif ife i bed. i wanted to be well. through my faith, incredible support i had, kept looking forever new treatments, new information. >> i want to talk about that in just a moment. i want to talk about dani and how she is -- she's really struggling. we have pihave pictures of her. she seems that she's in constant pain. >> she is in constant pain. she has had a very different course of her illness than ari. she wasn't able to handle a lot of treatments because she had allergic reactions to medications. her trajectory has been
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different. >> there we go. she looks really good here. but i know that in the video, she's just -- she has the mask on, the happy face for the camera. you got treatment for both kids. at one point, you were so desperate that you actually sent them to india for still cell transplants. >> we had exhausted everything here, they were not getting wall. dani's doctors said you will walk in and find her dead some morning. we had seen some positive outcomes from embreyonic transplants, so i did some fund-raising, went into debt, so dani and ari both went to india. >> she is bed ridden, ari you are up and walking around. what was this treatment like for you? what do you remember about how you felt the first time and then the second time?
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>> well, the first time one of the first things i noticed is my back pain had begun to dissipate. i had been chronically uncomfortable. i had difficulty sleeping. by the second trip -- we had a lot of trouble -- i had a lot of trouble moving around, riding in the car. by my second trip, i was riding on rickshaws in india, which i never thought i would be able to do because of the jostling. >> so you are going from complete depression to having a life in a foreign country. >> mm-hmm. >> tell me about that emotionally. >> it was a profound experience. i think -- i had my first full day of activity in new delhi. >> how many years after you had been so sick? >> i think 12. >> wow. >> 12 years. i had not been able to be up for a full day, interact with people and be active. that was profound. it will always be a special place in my heart for where i
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experienced that first taste of health. >> kate, this kind of treatment is very controversial. >> it is. it's not done in this country, as far as i know. what i want everybody to know is i was up against the wall. i wasn't willing to see my children spend the rest of mare lives in bed. i know suicide was a possibility for lyme patients, i don't think my children were activity suicidal, but it's not a life, it's not a life to spend all your time in bed, throwing up, not being able to read. that's not a life. i was willing to go to the ends of the earth to try everything possible. ari is sitting here next to mre today. we could plan to be here today. that was amazing. there was a time i could never plan anything. >> ari, why do they think you have improved so much and dani has not? >> i have been fortunate in that my body, my liver have been able to handle the antibiotics. and she's had, unfortunately, a
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lot of allergic reactions that caused other complications. also, i was able to receive throw rounds of the stem cell treatment. she was only able to do one. shows too sick now to travel. it requires a lot of resources that we don't have. >> i know you have some websites. >> we do. >> where you tell your story. people probably want to share their stories with you. we have some banners to share with people. it's called help ari and dani. >> mm-hmm. >> that's where we saw the video. ari, how are you doing now? you're in school, right? >> this last quarter was actually a pivotal quarter for me. i was able to do full time classes. that was all i did. it took a bit of a toll on me. i'm now taking kind of some antibiotics just to curb any sort of relapse. >> but you're moving forward. >> i'm much better.
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>> wow. >> not 100%, but i have a life now. >> that's exciting. >> i'm able to think. >> kate, you're a psychotherapist, now your business has pretty much turned -- >> it didn't start out like that, i have gotten referrals over the years, and patients are lime pa s ars are their family. >> ari, for people watching at home what is your message? >> is hope. support is so important. i wouldn't have gotten where i am without a ton of support. >> don't give up. >> don't do it on your own. >> kate? >> for families and friends to hang in there. people can nnot do it on their own. >> thank you for being here. your stories are a real inspiration for everybod thank you to home. thank you to all of our guests today. we have so much more to learn about this horrible lyme disease, we posted some
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resources for you online so you can get help. if you know somebody who needs this resource go to our website, i invite you to follow me on twitter at cheryl@abc7. i'm cheryl jennings. have a great week. bye-bye for now.
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