tv Beyond the Headlines KOFY September 27, 2014 9:00pm-9:31pm PDT
. welcome to "beyond the headlines" i'm cheryl jennings. what do you kw about lyme disease, which youan get from a tick bite. what i learned was shocking. at first the centers for disease corol only reported about 30,000 cases a year. but new studies reveal those numbers could be far higher, as many as 300,000 cas a year. and now the cente 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. ou know her, she has her new book out called "the valle of
amazement." we have a little book flyer to show you about that. her life and career were dailed by lyme disease for while. also amy's doctor joins us tay, 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 gladto do this because your career was derailed because of this. >> i couldn't write, i couldn't read, i couldn't reunderstand things. >> do you remember when you first g sick? >> i got sick the dayfter i was infected. i didn't know i was infeed, 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 typilly the first symptom people talkabout. >> dr. stricker, you are amy's doctor. thnk you for allowing us to have this conversation. what is lyme disease? >> lym disease is a mor epidemic. e cdc estimates at least 30,000 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 ticks. very often po doneople don't kn they were infected o had a tick bite, then they gethese bizarre symptoms and it canbe 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 adu tick which is relatively big. the nympho tick, the most contagious, is about the size of
a poppy se. on the right is an encouraged tick, that's how big it can get en it has a lot of blood meal. >> that sounds sogross. 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 theick bites you, it injects saliva into the wound t has a numbing effect, an anti-coagulant effect, and it can suppress the immun response so the tick can sit there for hours and feed and transm 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 hings. they thought i had addison's or curbing i cushinges. i hadypoglycemia levels of 27, 31. that made them take it seriously. >> at what point did you get tested for lyme doisease? >> i was getting worke up for ms, if you can lieve that. iaw this test, i said what is that. i looked it up on the internet for lyme. i sa the symptoms, they said at's what it is. so you sort of diagnosed yourself. >> es, but then i told the doctor and it came back gative. he said it is not always accurate. heaid i think i have lyme. he said, no, i didn't test you for lyme. i with test you for syphil. i thought he thinks i have syphilis? it's more likely i have that than lyme disease?
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 e of my symptoms will be permanent. one of them is neuropathy in my feet, which affects my balance. it was painfulfor a time til i found out i needed a certa kind of medication for epilepsy which is also something i developed through lymedisease. i can't drive, but i never liked to drive any way i can do almost anhing 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. >> let's talk abt this. dr. stricker, you won a manhattan type project for this. it's so pervasive. >> it's so pervasive. so many peoplehave the disease. it's been ignoredy funding agencies, the fedal 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 me 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 me than half the patients. in contrast, the teing for aids picks up more than 99% of hiv patiens. we need better testing. >> amy, grateful that you have a
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 tome. pictures of you swimming with gigantic arks. >> i discovered that as my health started coming back, i was saying i'm grateful f 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, wen you can do everything you want or almost everything,ou're healthy. you may still be si 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 coveredhat. >> dr. stricker, before we go, a sortsf treatments work for
patients? >> with erly diagnosis, the antibiotic treatments often work, though n always. it depends if it's just lyme disease or some coinfections tt are also transmitsed by ticks. if the disease is missed and not diagnosed early t could take a lo course of antibiotics to get ople better. that's really the chlenge of treating this disease >> amy before we go, final thoughts on what you wantpeople 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 ilads.org for those dtors who are lyme literate, to just keep at it. don't give up. look for those incremental changes. seize your life back. >>ll right. dr. stricker, real quick? >> again, we have this wderful tool called the internet. you can find out all kinds of things about lyme disease on the internet. i encourage peopleo seek that out f they're not gting better
or good treatment, that's the place to get information. >> thank you both so much for being her for being so open about this disease. i know you both wll get calls. >> yeah. >> preciate it. we have to ta a break. coming up, a mother whose two adult children e living with lyme disease more than a decade after they were infected male announcer: the savings really stack up during sleep train's inventory clearance sale. save 10%, 20%, even 35% on a huge selection of simmons and sealy clearance mattresses.
it just hurts. ♪ >> just nausus out of mymind. 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 inhe middle of the night. i've been the only one there in theiddle of the night for year when one of them is throwing in one room, the other one is unable to sleep and feels like they'll thr up in the other room. i'm gog 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. sufferin is just required. there's nothing to do t relieve the suffering. >> welcome back to our discussion on lyme disease and the heavy toll it can take if
not diagnosed quickly and properly. you heard from kate steel, the mother of two adult children suffering from lyme disse. she and her son ari are here today. your daughter aria just a little too sick to get out of d. 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 takes one salary just to payfor the medical care andstill go into tremendous debtto get the help they need. one thing i want say is that i'm glad to be the prent of these kids. i wouldn'to it differently i think i have an opportunity to bring about some change by coming forwar today. it has been a nightmare.
it has been morng until night, sometimes up all nighttrying to arrange care giving for them so ian go to work. days of not having care giving and leaving coolers of food near their bed. things would stay the me with suffering but changing all the time with symptoms. not knowing where to get help. >> i wanto 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 mayb 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 are of a tick bite. i nev had a bullseye rash. i just began feeling really
sick, weak, having trouble sleeping. i was msing school. i -- >> h long did this -- this obviously went on through school and then high school, too, right? >> yes. i wasn't able to finish high school, iended up testing out. >> how d that affect your friendips with people, because you were isolated. >> it was very isolating. my illness and symptoms got the point where it consumed life and every action that i ok. 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 to get a diagnosi >> 23 doctors. >> during wch time we had no specific thing to do. i was being treated for chronic fatigue. we lost friends that couldn understand the illness. >> just getting sicker and sicker. >> mm-hmm. >> te, how did you finally get help? >> at the beginning i asked if
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 ty should be better by now. et'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, ri and danny want to go public about what happened to them. we'llave more on the impact of
welcome back to "beyond the headlines." talking about lyme disease and how it can cause severe consequences if it's not diagnosed and treated prorly. kate steele and her son ari are with me right now. her daughter, dani, is too ill to get out of bed but is atchin from home. your kids were diagnoed when they were little. just normal kids, outside doing their thing like everybody does. we don't think about the dangers of a tick bite.
and they're evywhere. we have dogs, everybod is susceptible to this. >> we did a lot of hiking. we were an outdoor family. we had two dog the dogs slept on the bed. we picked ticks off of the dog 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 eacother? 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 unfortately as our illnesses progressed and got worse, we wen't able to support each other in the sa way because we each needed so much individual support. >> yeah. how did you handle that psychologically? i know just there people in my own life, chronic illnesss devastating. it's depressing. >> it is extremely depressing. i was devastated.
i basical lost my life. i'm no somebody who gives up. i was not prepared to resign to spend the rest of my loif ife i bed. i want to be well. through my faith, incredible support i had, kept looking foreve new treatments, new information. >> i want to talk about that in just a moment. i want to talkbout dani and how s is -- she's really struggling. we have pihave pictures of her. she seems that she's in constant pain. >> she is in consnt 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 different. >> there we go. she looks really good her but i know that in the video, she's just -- she has the mask on, the happy face for the camera. youot treatment for both kids. at one point, you were so
desperate that you actually sent them to india fo 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 in debt, so dani and ari both went to india. >> she is bed ridden, ari you are up and walkingaround. what was this treatment like for you? what do you remember about how you felt theirst time and then the second time? >> well, the first ti 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 dression 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 dayf activity in new delhi. >> how many years after you had been so sick? >> i think 12. >> wow. >>2 years. i had not been able to bup for a full day, interact with people and active. that was profoun it will always be a ecial place in my heart for where i experienced that first taste of health. >> kate, this kind of treatment is vy 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 spd the rest of mare lives in bed. i know suicide was a possibility for lyme patients, i don't thi my children were tivity 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,hy do they think you have improved so much and dani has not? >> i have been founate in that my body, my liverave been able to handle the antibiotics. and she's had, unfortunately, a lot of allergic reactions that caused other complications. also, i was able toeceive throw rounds of thetem cell treatment. shewas only able to do one.
shows too sick now to travel. it reqres a lot of resources that we don't have. >> i know you have some websites. >> we do. >> where y tell your story. peoplerobably 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 vido. ari, how are youoing now? you're in school, right? >> this lastuarter was actually a pivotal quarter for me. i was able to do full time classes. th was all i id. 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 rward. >> i'm much better. >> w. >> 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 gtten referrals
over the years, and 90% of my patients are lime pa s ars are their family. >> ari, for people watching at home whatis your message? >> is hope. support is so important. i wouldn't he gotten where i am without a ton of support. >> don't ge up. >> don't do it on your own. >> kate? >> for families and friends to hang in there. people ca nnot do it on their own. >> thank you for being here. your stories are a real inspiration for everybody at home. thank you to all of o guests today. we ha so much more to learn abouthis horrible lyme disease, we posted some resources for you online s you can get help. if yu know somebody who needs this resource go to our website, abc7news.com/community. i invite you to follow me on twitter at cheryl@abc7.
i'm cheryl jennin have a great week. bye-bye for now. alex jenny jenny carlos alex carlos good morning burrito team! we set out to make a bigger, tastier breakfast burrito and i think we nailed it. introducing bigger, better breakfast burritos. the grande sausage, packed with hash browns, sausage, and creamy sriracha sauce and the meat lovers, stuffed with ham, bacon and sausage, both wrapped in a warm guerrero tortilla. burritos so big, they make everything look smaller.
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