. welcome to "beyond the headlines" i'm cheryl jennings. what do you kw aboutlyme disease, which youan get from a tickbite. what i learned was shocking. at first the centers for disease coro 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 tha our guest, amy tann, living with lyme disease. ou knowher, she has her new book outalled "the valle of amazement." we have a lite book flyer to show you about that. her life and career were

dailed by lyme disease for while. alsoamy's doctor joins us tay, dr. ray stricker, ternationally known for his work in treating lyme disease pai patients. amy, i was holding up your book, and i bet you were glato do this because your career was derailed because of this. >> i couldn't write, i couldn't red, i couldn't reunderstand things. >> do you remember when you first g sick? i got sick the dayfter i was iected. i didn't know i was feed, but i had the flu, the summertime flu. i had not been ck 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 a least 30,0 new cases a year, probably more than that, more common than breast cancer, six times more coon than aids. it is a disease transmitted by ticks. very oft po doneople don't know theyere infected o had a tick bite, then they gethese bizarre symptoms and it canbe hard t 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 sympto. 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 numbng effect, an anti-coagulant effect, and it can suppress the iun 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 andver 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 disder. i had problems walking. i had so many things wrong that ople were looking at different hings. they thght i had addison's or

curbing i ushinges. i hadypoglycemia levels of 27, 31. that ma them take it seriously. >> at what point did you get tested for lyme doisease? >> i was getting worke up for ms, if youan lieve that. iaw this test, i said what is that. i looked it up on the internet fo lyme. i sa the symptoms, they said at's what it is. so you sort of diagnosed yourlf. >> es, but then i told the doctor and it came back gative. he said it is not alway accurate. heaid i think i have lyme. he said, no, i didn't test you for lyme. i with test yofor syphil. i thought he thinks i have syphilis? it's more likely i have that than lyme disease? i decid to look for a doctor. this i the guy i found. i got the right test, and i

tested positiv i was totally relieved. >> i know it's good news and bad news. hold those thoughts. we have to take a brea we will back in just a moment with much more from author amy

welcome back to "beyond th headlines." ware talking about the silent epidemic of lyme disease. amy tan has lyme disease and her doctor, ray stricker guided her intohe 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 discoveed over that time that e of my symptomsill be permanent. one of them is neuropathy in my feet, whh affects my balance. it was painfulfor a time til

i found out i needed a certa kind of medicion 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 tis 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. >>t'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 tng 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. >> u want better testing, too. >> much better testing.

the xer initial tecoercial test available are terrible. they miss me than half the patnts. in contrast, the teing for aids picks up more than 99% of hiv patiens. we need better testi. >> amy, grateful that you have a diagnosis. you don't msure 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 discoveredhat as my health started coming back, i was saying i'm grateful f this. i grateful i can make my bed. i'm grateful that i can read, that i can write this paragraph. it was tough those incremental success that i continued until i have this new definition,en 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 forkids >> so many parents can't afford to get the test done. insurance in the pas 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 diseas is missed and not diagnosed early t could take a lo course of antibiotics to get ople better. that 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, s the right doctors, get the righ tests, go to ilads.org for

those dtors who are lyme literate, toust 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 o f they're not gting better or good trement, that's the place to get information. >> thank you both so much for being her for being so open about this disease. i kn 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 disee more than a decade after they were infected

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 t horror of it. nobody knows. i'm the only one there inhe

middle of the night. i've been the only one there i theiddle of the night for year wh 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 ba and forth. it feels like they'll die right then. we're trying to decide whether to go to the emergency room. is this somethi they can help with. so many times going to t emergency room to find out they can't help. sufferin is just required. there's nothing to do t relieve the ffering. >> welcome back to our discussion on lyme sease 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 le disse. she and her son ari are here today. your daughter aria just a little too sick to getut of d. she'll be watching from hom >> yes. >> kate, you're a single mom. this has been a long, difficult

journey for you. how old were the kids? >> 10 and . it's years we've been in this whirlpool of fighting lyme. >> how has ma be 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 aboutsome change by coming forwar today. it has bee a nightmare. it has be morng until night, sometimes up all nighttrying to rrange care giving for them so iano to work. days of not having care giving and leaving coolers of food near their bed. things would stay the me with suffering b changing all the time with symptoms.

no knowing where to get help. >> i wantoalk to you, ari. you look great. you look wonderful. i know this has been a struggle for yo to get in this state of health. ke me back to that time when you were first sick. >> when i first got sick, we ought mayb it was a cold, maybe then i had the flu, because the symptoms kept growing and not going away. >> did you ow 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 thatffect 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 showe 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 te we hado specific thing to do. i was being treated for conic 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 sould be better by now. et's test for ly. so we ended up testing for lyme, finding a lyme literal doctor a opening up possibilities for trement. >> 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 i 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 watchin from home. your kids were diagnoed when they were little. just normal kids, outside doing their thing like everybody does. we don't thk about the dangers of a tick bite. and they're evywhere. we have dogs, everybodis susceptible to this. >> wedid a lot of hiking. we were an outdoo family. we had two dog the dogs slept on the bed. we pied ticks off of the dog but di'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 supporfor 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 illnessesrogressed and got worse, we wen't able to sport each other in the sa way because we each needed so much individual support. >> yeah. howid you handle that psychologally? i know just there people in my own life, chronic illnesss deastating. it's depressing. >> it is extremely depressing. i was destated. 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 toe well. through my faith, incredible support i had, kept looking foreve new treatments, new information. >> i want to talk about that in just moment. i want to talkbout dani and how s is -- she's really

struggling. we have pihave picturesf her. she seems that she's in constant pain. >> she is in consnt pain. she has had a very different course of her illnessthan ari. she wasn't able to hndle a lot of treatments because she had allergic reactions to medications. her trajectory has been different. >> there we go. she looks rally good her but i know that in the video, she's just -- she has the mask on face for the camera. youot treatment for both kids. at one point, you were so desperate that you actually sent them to india fo stillell transpnts. >> 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 outces from embreyonic

transplants, so i didome fund-raising, went in debt, so dani and ariboth 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 w 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 begu to dissipate. i had been chronally uncomfortable. i had difficulty sleeping. by the second trip -- we had a lot of trouble -- i had a lotf trouble moving around, riding in the r. by my second trip, i was riding on rickshaws in india, which i never ought i would be able to do because of the jostling. >> soou 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 lhi. >> how many years after you had been so ick? >> 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 inmy 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, asfar 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 childre were tivity suicidal, but it's not life, it's not a life to spend all your time in bed, throwing up, not being ae to read. that's not a life. i was willi 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 ot? >> i have been founate in th my body, my liverave been able to handle the antibiotics. and she's hd, unfortunately, a lot of allergiceactions that caused other complications. also, i was able toeceive throw rounds of thetem cell treatment. swas only able to do one. shows too si 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 yo 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 youog now? you're in school, right? >>his lastuarter was

actually a pivotal quarter for me. 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 busine 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 he. support is so important. i wouldn't he gotte where i am without a ton of support. >> don't ge up.

>> don't 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 foreverybody 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 whoeeds this resource go to our website, abc7news.com/community. 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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♪ welcome "beyond the headlines, a this is about safety on the roadways, especially for pestrians and bicyclists. we know too many local residents have been killed or injured in bicycleelated incidents. we have a story filed in apri about the city worst location for pedestrian accidents and fatalities venice avenue between market stret and gary. >> reporter: croing van nuys avenue on foot is a dangerous gamef beat the clock, no time to wait. >>dangerous to walk because of the traffic, you know, so people have to watch othwise they lose their lives. >> reporter: this year, seven pedestrians lost lives in san frncisco, four killed,