. 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 rported about 30,000 cases a ye. but new studies reveal those nuers could be far higher, as many as 300,000 cas a year. and now the cente for disease ntrol estimates that number could be as high as 1 million cases a year. we will talk about that. our guest,my tann, living th lyme disease. ou know her, s has her new book out called "the valle of

amazement." we have a little book flyer to show you about that. her life and caree were dailed by lymeisease for while. also amy's doctor joins us tay, dr. ray stricker, internationally known r 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 derled 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 had the flu, the summertime flu. i had not been sick with the flu for about 15 years. i never g 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 ha this conversation. what is lyme disease? >> lym dsease is a mor idemic. e cdc estimates at least 30,000 new cases a year, probly more than that, more common thanreast 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 picturef a tick mouth, which is really gross describe how small this is. >> on the left is probably an adu tick whi is relatively big. the nympho tick, the most contagious, i about the size of

a poppy se. on the right is an encouraged tick, that's how big it c get en it has a lot of blood meal. >> that sounds sogro. when somebody gets sick, they have flu-like symptoms. the little mouthpieces here, they just send all kinds of things into your system. >> they do. when theick bites you, it injects siva into the wound t has a numbing effect, an anti-coagult effect, and it c suppress the immun response so the tick can sit there for hours and feed and transm lyme disease. >> amy, when you got sick, you startedoing 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 jnt problems, insomnia, slee 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 dypoglycemia levels of 27, 31. that made them take it seriously. >> at what point did you get tested for le doisease? >> i was getting worke up for ms, if you can lieve that. iaw this test, i said what is that. i loked it up on the internet for lyme. i sa the symptoms, they said at's wha 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 hve that than lyme disease?

i decided to look for a doctor. this i the guy i found. i got the right test, and i tested positive. was totally relieved. >> i know it's good news and bad news. hold those thoughts. we have to take a break. we wll back in just a moment we wll back in just a moment witmuch more from author amy

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welcome back to "beyond th headlines." we are talking abouthe silent epidemic of lyme disease. amy tan has lymdisease 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 mething 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 threst of your life. >> i'm hoping this guy here will come up with something. he and his doctors will -- they'll velop 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 ma peoplehave the disease. it's been ignoredy funding agencies, the fedal government. we need ally a manhattan project, the kind of thing that addressed aids and created all these wonderful eatments for aids. we need the me thing for lyme disease. we need national legistion to

promote this research that will develop bett 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. icontrast, 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 the things you can't do anymore. we will show some pictures of something you did. this is amazing tome. ictures 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 a foundation for kids, lyme aid for ds >> 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 tnsmitsed by ticks. if the disease is missed and not diagnosed ely t could take a lo course of antibiotics to get ople better. that's really t 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 ads.org for those dtors who are lyme literate, to just keep at it. don't give up. look for those incremental chaes. seize your life back. >>ll right. dr. stricker, real quick? >> again, we have this wderful tool called the internet. you cafind out all kinds of things about lyme disease on the internet. i encourage peopleo seek that out f th're not gting better or good treatment, that's t 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 twodult children e living with lyme disease more tha a decade after they were infected.

it just hurts. ♪ >> just nausus out of mymind. back pa. 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 th 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 fes like they'll thrp in the other room. i'm gog back and forth. it feels like they'llie right then. we're trying to decide whether to go to e 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'nothing to do t relieve the suffering. >> weome 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 childr 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'syears we've been in this whirlpool of fighting lyme. >> how has ma been foryou. you are working two jobs. >> i work full time, twoobs full time, because takes one saary just to payfor the medical care anstill go into tremendous debtto ge the help they need. one thing i want say is that i'm glad to be the prent of these kids. i woun'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 mrng unt night, sometimes up all nighttrying to arrange care giving for them so ian go to work. days of not having careiving and leaving coolers of food near

their bed. things would stay the me with suffering but changin 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. >> wh i first got sick, we thought mayb itas a cold, maybe then i had the flu, because the symptoms kept owing 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 beganeeling really sick, weak, having trouble sleeping. i was msing school. i -- >> h long did this -- this obviously went on through school and then high schooltoo, right? >> yes. i wasn't ableto finish high school, iended up testing out. >> how d that affect you

friendips with people, because you were isolated. >> it was very isolating. my illness and symptoms got the point where it consumed life and evry 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 >> 23doctors. >> during wch time we had no spefic 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 tread 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

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welcome back to "beyond the headlines." talking about lyme disease and how it can caus 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 watchin 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 evywhee. we have dogs, everybod is susceptible to this. >> we did a lot hiking. we were an outdoor family. we had two dog the dogs slept on the bed. we picked tis 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 re both ill, what is that like for you being around eacother? are you able to find support for one nother? >> 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 hand that psychologically? i knowust there people in my own life, chronic illnesss devastating. it's depressing. >> it is extremely depressing. i was devastated. i bical lost my life. i'm no somebodyho gives up. i was not prered to resign to spend the rest of my lo ife in bed. i want to be well. through my faith, incredible support i had, kept looking fore 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 have pictures of her. she seems that she's in constant pain. >> she is in cons pain. she has had a very different course of her illnes 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 walkn and find her dead some morning. we had seen some positive

outcomes from embreyonic transplants, so i did some fund-raisi, went in debt, so dani and ari both went to india. >> she is bed ridden, ari you are up andalkingaround. 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 t 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 rishaws in india, which i never thought i would b able to do because ofthe jostling. >> so you are going from complete dression to having a life in a foreign countr >> mm-hmm.

>> tell me about that emotionally. >> it was a profound experience. i think -- i had my first full dayf activity in new delhi. >> ho 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 hlth. >> 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 hildren spd the rest of mare lives in bed. i know suicide was aossibility for lyme tients, 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 t mre today. we could plan to be here today. that was amazing. there was 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 handl 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 theirtories 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 too a bit of a toll on me. i 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 homehatis 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 yo own. >> kate? >> for families and friends to hang in there. people ca nnot do it on their ow >> 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 abthis horrible lyme disease, we posted some resources for you online s you can gethelp. if yu know somebody who needs this resource go to our website, abc7newcom/community. i invite you to follow me on twitter at cheryl@abc7. i'm cheryl jennings. have a greatweek. bye-bye for now.

welcome to "bend the headlines. today's show is about the importance of mentong in young people's lives who are tured arond because of the positive influence of their mentors. young people who have mentors have a better chance of succeeding and are more likely to make positive choices throughout their lives abc 7 morning news co-anchor kristen zee moderated one of the panelscussions at the young women's summit in october. the day-long summit offered young women professional guidance, networkingips and personal mentoring. lieutenant governor gaf o or gi newsom's wife gave the keynote address. thevent was free to students 17 to 23 and aput