My Mind on Lyme | Katie Kreitzer | TEDxTrousdale

TEDxTrousdale is the premiere TED licensed event at the University of Southern California. TEDxTrousdale 2016: Make Your Mark took place on April 16 at the USC Brain & Creativity Institute's Joyce J. Cammilleri Hall. We featured seven outstanding student speakers and performers as well as one keynote speaker who shared their take on what it means to "make your mark" on the world.
Katie is an artist entrepreneur, graphic designer, musician, writer, advocate, and activist using her own experiences with disability and chronic illness to encourage individuals and institutions to utilize empathetic design thinking in their actions and interfaces. She is currently working with a team to produce The Crohn’s Moans, a documentary investigating alternative treatment methods for IBDs, is the creative director of Saraswati Water, is the co-founder and subject of a brain retraining trial program for individuals with Neurological Lyme Disease, and is in the process of self-training her Medical Alert and Psychiatric Service Dog, Willa. She is passionate about healing through nutrition and mindfulness and is currently studying NGOs and Social Change and Design Communication at the University of Southern California, where she is a junior.
This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at ted.com/tedx

[@Mamita0352]

I watched this in the middle of a fog. I can only do one thing at a time. In the end, I know that I need to love and accept myself. this comment took me 30 minutes to write.

[@prayarcher]

Check out AHCC it's apparently a very potent immune booster and is bettering the quality of life of many with the illness. Also if your on Facebook the group "Lyme Disease Support Group" is a great place to find other treatment options as not every person's body is the same. Best wishes💚

[@andyv2128]

Sending love, hope and understanding to you and all affected 🙏❤️🙏❤️

[@lindaedvardsson4218]

Eli S 💚 never, ever give up💚... we need you to be well...🥺

[@kevinhudson3032]

3 years in. Logos nutritionals. God helped me. A army buddy and former delta force surgeon sent me that way. I’m better than I’ve been in 3 years. My buddy said the medical system almost outlaws doctors from even talking about it. I’m extremely blessed to have been blessed with such a good friend who just did it anyway. Pray often

[@tmuldown]

Thank you Katie ! Awesome Ted talk! Your story helped me better understand my 16 year old daughter's feelings, brain fog, and silent challenges. I could not understand why in the hospital we could not even watch TV together because the the 'sensory bombardment' that Lyme brings. Your talk clearly brought that home to me. Thank you for putting yourself out there to help others!

[@OthO67]

Great speech. I could only wish there was a sound man to help with the terrible acoustics.

[@joelyazell7380]

I’m so proud of myself,and it’s all that I need,because I know,I know ,where and who I am in the midst of my own understanding.

[@jessieblyler5547]

Thank you for this as someone who finally got diagnosed with lyme after three long years. I feel heard.

[@nickocchiogrosso9223]

Thank you for sharing your story! It is so validating to hear someone else has had similar experiences with Lyme.

[@rachelsingley7107]

Wow...just incredible. Her honesty and descriptiveness shined a light on on all of the things I feel we're scared to be honest about as chronic lyme sufferers. My fog is pretty much always there and makes life really really hard to move through. She just gave me that much more hope that we can live with this disease and find comfort 💜

[@janinek5258]

Thank you so much. I have Lyme and the end of this Ted Talk related to me and my situation a lot. Thank you, thank you, thank you. I mean it

[@aceman1969nlb]

AWESOME. She NAILED my life almost exactly. I survived 4 grandmal seizures that all involved straight shots to cement with my head. I just wish people understood. Been applied for disability for 2 yrs and no results. Still no income after 7 yrs. Owned own c-store business for 22 yrs . All I paid in taxes personally and through business doesn’t matter apparently when you go down totally unexpected. No one will hire because I’m too big of liability with seizure meds, etc. . I would not wish this life on my worst enemy. But, hopefully things will get better and I don’t lose everything I worked for for 32 yrs. I just keep the faith. That’s all I can do. So sorry for the rant, but nobody around me including family understands. 🙏🙏 to all that deal with this crazy disease.

[@stellaancimer8505]

did you get seizure from lyme?

[@lindaedvardsson4218]

The echo in this video is horrible for a lymie🥺💚

[@treemcfarland2375]

Yes!

[@treemcfarland2375]

I agree! Some pitches give me migraines

[@theresilientspud]

It really is 🙉

[@robertgold2643]

Yes, but a rare chance for validation. Describing the symptoms is next to impossible and nobody understands anyway so videos like this help us remember we’re not crazy, just really, really sick. And that it’s possible to get better. Thank you Katie 🙏

[@ookipuki]

This needs more views....... Lymee disease can make people go insane! :( one little tick bite....

[@AddressLane-eq1qf]

Lyme causes schizophrenia

[@Chimonger1]

Good talk! Some of us still manage to do more than the average person, while chronically ill; _Imagine what we could have accomplished, without Lyme's_... HOW MANY diagnosed with FMS., CFS, even MS, etc. other labels, actually have Lyme's, not those other labels....because tests for it are fairly useless, coupled with too many Docs diagnose based on labs, not patient-reported symptoms, even when the Docs can witness those?

[@jessd956]

Winter Star With all due respect, it's Lyme disease, not Lyme's. We struggle for recognition of this illness so much and need to refer to it with the proper name.

[@TSandy-jl3nx]

Thank you for sharing your experience. I had Lyme 2 years ago, I got the bike in Sweden (I think; I live in Germany and the bite was as big as basketball on my back); I had simular symptoms but I couldn't sleep. I had such bad back pain; I would only sleep a few hours at a time. A friend of mine suggested to me to look in the sun for 3 minutes; I could only do for 2 minutes then the next day half of my face fell (like I had a stroke). Finally, someone could see that I was sick. So after 2 months after the bug bite, I was getting treatment. Now, I cured.

[@brownsugga1981]

T. Sandy what did you do for treatment?

[@karenlittleton6073]

T. SANDY hi,I'm Karen,NY,how did you get cured,please reply to me,let me know who you are,and why as I forget,thank you kindly.

[@jonbog6479]

I loved this talk.. So honest, so well described.

[@danceswithghostsquickspiri697]

At least you have parents that support and believe you.....my mom would say it is my opinion...i have to then self advocate my own health..

[@kellythompson1318]

My mom is the same way

[@abethepunk]

Same, along with my sister. I hope things have improved in your lives, this is a nightmare no one should live.

[@tiffaniesterzer7910]

Thank you for this. I was diagnosed with Lyme in 2019 and much of this hits home.

[@ookipuki]

My partner has severe Chronic lymes disease ..... they can only afford Xanax for their episodes. And yes. It's purely from lymes disease/anxiety and depression. Sometimes I hate life When people who suffer don't have the money to get real help... But there is always hope 😊

[@cdwoodward]

Yes, the other frustration of this illness is the cost of treatment. I just listened to another Lyme Specialist on KZbin bragging about successfully helping the woman next to him. I called his clinic to be told he does not accept insurance. I was told by Cleveland Clinic that they could refer me to a great Lyme Dr. but no that Dr did not take insurance. Along with the dibilitating symptoms comes poverty.

[@sparksgirl9919]

God bless you and thank you for sharing your experience.

[@juliezimmerman3450]

Thank you for sharing your story. It’s so helpful for those of us with loved ones suffering from Lyme to learn from the experiences of those who have already battled the disease. I pray you are doing well.

[@prestonwinklefield7271]

thanks so much for this talk! those of us who understand from many of the same experiences..hey, we get it. May others get it too, before they Get It, in all that busy deafness that keeps them occupied. that, along with the labels, constant questions that whisper, "I don't believe you..." education is called for! this is spreading like wildfire, and it's all so hushed. sick of that. I'm about to blow that door of ignorance wide open, fill the emptiness with knowledge. there is no better way to learn about Lyme disease than this: Listening to those who actually have it! it's too much of a concern to wait until May. one month.. lol a year, 4 years doesn't have much affect. the buck stops at the 2 little green doors. either they will hear, or they won't! magnificent talk here!

[@Coolness6179]

This was so beautiful, and I can relate to it so much. Lyme brain is a b***. Thank you

[@ookipuki]

Me and my partner also call it "Lyme brain" haha... ... Its a nightmare 💔💔💔

[@pureone26]

Really great, thank you

[@nosmartyr]

I am excited for having so articulate and clear a thing to share where loved ones can understand that brain struggle. And I also wonder "will it even matter if I show this video to someone who doesn't yet get my chronic lyme struggle cuz chronic lyme isnt fun like cancer?" But yeah thannnnk you

[@xander7099]

I was diagnosed with lyme disease when I was about 12. Being in my 20s now, I'm pretty used to it now but I have quite a few relatives who had worse symptoms. Born and raised in northern California its fairly common

[@truettestubbs4474]

Wonderful!

[@ponomarevamary91]

Almost made me cry :(. All the health to you!

[@mh.7136]

My pain management Dr asked me to ask my primary care physician to order a Lyme test for me. My PCP said Oh, you can't possibly have Lyme. like it was an absurd idea. I have been so sick for so long with labs stating Lupus SLE and I struggle and struggle I don't even know how I continue to stay employed. it's because maybe I'm a fighter and I don't know what else to do. I just didn't stuck between a rock and a hard place because I can't find anyone who is a doctor to believe that I could very possibly have this illness. Not even the Rhumatologist. I will continue to hold out hope that my day will come, that I won't have to work and that there's someone in the Seattle area who can diagnose me and realize that I am truly disabled ( I honestly don't know how I do it. All my energy.. all of it.. I don't even know how I do it I just don't know) anyway sorry. I went another Direction but thank you for your very real conversation I think I needed it tonight because I really just don't even remember why I came to Ted Talks thank you.

[@TracyKaufman]

Order a test directly from DNA Connexions in Colorado Springs. I waited so long because the IGENIX is prohibitively expensive and others kept coming up negative. For years, I forced myself to keep going, to stay awake, to push through so much pain... They don't test for every single gram negative bacteria out there yet, but always adding more. And all coinfections are included in the same price. Then find a Lyme Literate practitioner in your area. Preferably a functional MD or ND. Dietrich Klinghardt is a pioneer and near Seattle. Good luck to you.

[@NH4x4Jeep]

Great advice Tracy! If you're in the US, the LymeDiseaseAssociation has a referral service. Also, you should buy Dr Richard Horowitz's newest book "Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease". He is a doctor and leader on the bleeding edge if Lyme research. He has helped many thousands​ of people with chronic Lyme get better. Don't bother with Chinese herbs, Dr. Horowitz is the real deal! He talks about the many Lyme infections and co-infection (including Babesia, Ehrlich, Rocky Mountain Spotted fever, Powassan, etc...) Hereas a lot of info on his website site cangetbetter including a 1 HR video link to a conference with the info from his book. See also his 2 hour seminar speaking at the 2017 "Southern tier Lyme Conference.". The IDSA test is the best there is, but at the end of the day, Lyme is a differential diagnosis. You need a good lyme doctor to diagnose you and treat you. Diagnosis with incomplete treatment can make things worse physically, if not just because you're "cured" now. Wishing you health and healing in your Lyme journey. I have suffered with Lyme for 30 years (severely for the past 10 years). ~ Jon

[@NH4x4Jeep]

See also the movie "Under our skin". You're NOT alone. Lyme is now classified by the W.H.O. as a "GLOBAL PANDEMIC".

[@locklung6458]

SexiCzech H. IGENIX test is the test you should get done the others are innacurate nearly 50% of the time

[@prayarcher]

There are healthy practices you can adopt that will help you if in fact you do have the illness and will also benefit you even if you don't. Google AHCC many have found great relief from it. Also if your on Facebook check out "Lyme Disease Support Group"

[@stephaniehuurman2149]

Beautiful soul and I’m right there with you I went to Germany for hypothermia to beat this and I get it

[@kimberlee3243]

Lyme sucks. 4 1/2 years and going 😞

[@jimdavis6519]

Ty

[@audrachristine5044]

Thank you! ❤ I 100% relate to what you’re saying, nine months is bad! My journey has been for over 30 years! 🤯 I JUST got a diagnosis finally a couple months ago! I’ve seen so many doctors I can’t even keep track, and had so many crazy symptoms that morphed into other symptoms. And I relate to people thinking there’s nothing really wrong, it SUCKS And makes you question yourself so much! as a teenager I was always tired and slept more than other kids, and got sick more than they did. I would skip school to take a nap lol! Or go to the nurses office to lay down 😢😭 Much later I was in a ball in bed for almost an entire year, except I WAS NOT sleeping, I couldn’t, but I was in so much pain and nauseas and disassociated and completePANIC MODE! (Other than the few hours that I could sleep at night, but as soon as the sun started to show through the window, I would feel it all ramping up. I could almost hear it ramping up) I don’t really even know how I kept living, I kept wondering when my body was just going to shut down because how could anyone be that way for that long? I don’t know what the future holds now I’m just starting, but there’s so many people out there suffering with the same things. I finally got diagnosed at the Cleveland Clinic department in Functional Medicine. I had one to two other functional medicine doctors before this, but they didn’t run testing, they used a muscle testing machine. The infectious disease doctor I saw used standard testing, which is like flipping a coin and then he told me the parts that were positive must be false positives. I hope that I can still make something of myself eventually and that I can help other people that are struggling in this way. 🙏❤️

[@IdkwhymynamecantjustbeCody]

I prefer to say cotton brain instead of brain fog. It just seems more accurate.

[@lynndurbin9476]

Nice description. Not everyone who has lyme disease is so lucky to afford medical treatment or have parents who support them. Try bringing up the fact more clearly the medical industry including insurance companies, hospitals, doctors (as you did), universities for research, and medical associations are all equally opposed to diagnose and treatment of these infectious diseases. Sorry you suffered at such a tender age.

[@michalgoes]

I faced terrible Herxheimer reactions during my Chlamydia Pneumonia treatment. I remember that in those days I made a will-document because I didn't think I would get out of it.

[@DariaRock1]

Omg... I hope you are well. Did you take AB for chlamydia pn? I have absurd amount of infections and also know what dying is. Herxing etc. I took 2 years of AB.... not enough or not working anymore. Now I try to go herbal route with Buhner. Lyme has stole years of my life.......

[@spiderbite7849]

I have this too along with Lyme! What was your treatment?

[@creativeminds2359]

💚

[@cherylsmith9380]

Hard to understand. I wish there were subtitles because of the acoustics.

[@MichellePradhan]

I would like to do a Ted talk about my experience. I'm gonna have to use flash cards, because brain fog!

[@mallorymcguire833]

sound is hard to understand. Who taped this ?

[@potatogirl._.crochet]

Hey can somebody help me? I had undiagnosed Lyme desease for 5 years, it's been 4 years, i feel muuuch better, but still, it's so so hard to live with the pain and limitations i still have today Do someone have similar experience? Will the pain ever end??

[@thesoundtrackoflife99]

Lingering Co infections?

[@TheVernon52]

She says it's a bacterial infection and it is not.It's a spirochete parasitic infection.

[@Lifepashion]

Its a sophisticated bacterium, behaving parastically, similar to Syphilis

[@lynndurbin9476]

Don't get hung up on which family of microbe....some change but still remain in whatever it is without the name applied. I would be more concerned if you actually know the reproduction, different states of the microbe, and the constant Gene changes in replication.

[@Dorisasaurus1133]

Drs. Tried to tell me nothing was wrong. I was just stressed out because I had 2 small babies. I had Bell's palsey and they were telling me to go have a HIV test done bcuz I was homeless for 5 years before I had my youngest daughters.

[@Dorisasaurus1133]

Two years later this one doctor said he was going to check me for Lyme disease and low and behold...

[@TheValCapGroup]

Jeeze what a downer. This is all about her feels. I’m chronically ill with Lyme but I’m not “disabled”

[@black_squall]

I don't know, I'd say she was pretty positive. I don't necessarily use those kinds of words either even if there's truth to it.

[@jenaybrown4575]

Everyone's experience is different

[@gustavbloom7768]

Fix the sound.

[@davydiver]

Melliten from bee venim. Look it up with respect to Lyme disease...

[@ryuali9466]

I'm in the middle of using it.

[@MustangsTrainsMowers]

Lots of echo in that auditorium made it hard to listen to. It takes courage to speak on a stage in front of dozens, hundreds or thousands of people. I wish she had left out the swearing.

[@NcScbeach1]

I wanted to post this video until the harsh language.

[@ryuali9466]

I use bee genim therapy. It works.

[@greatnews4041]

You seem to be pleased you have Lyme.

[@BlessedWithEight]

Whoever you are, you are not well. No one who with a proper way of thinking would say that. Why should she be sobbing and depressed if she has a chronic disease? She may not be able to fix her condition, but she can decide what her attitude will be. How about you?

[@AndyS52]

weird

[@davydiver]

1,500X Microscope. In a good portion of the cases, you can see spirochetes in saliva. Big problem with western medicine when it is illeagale to have a microscope in their office...

[@NH4x4Jeep]

davydiver The funny thing is that viewing the Babesia cross through a microscope is not an "acceptable" diagnostic test. If, however, you look through the same microscope and see a a syphillis spirochete, the test is an acceptable diagnosis. I have a micro-photograph of the Babesia Malta cross formation in my red blood cells, but it's not considered a proper diagnostic test at this time. Go figure...

[@davydiver]

NH4x4Jeep yup.

[@DariaRock1]

@@NH4x4Jeep crazy :( when will there be a revolution in medicine?

[@Julie.Canada]

I dont think it's common or normal for a child to try and injure themselves for positive attention...trying to break her own knee cap? That poor little girl was neglected.

[@wplants9793]

I think she was doing that because of being infected with Lyme - but she didn’t know it until much later.

[@ookipuki]

Wether you are right or not, it has nothing to do with Lyme disease. Lyme can make you absolutely insane .... It just simply makes you in absolute agony and mental torment. Please spread awareness..... everyday. Its tick season! Please just tell everyone you love about it

[@user-lo9po5mp5u]

Seems strange; her brain seems to recall, problem solve, and be creative. That is not really what lyme does to you.

[@lynndurbin9476]

* * she has improved as people with lyme & coinfections can. Take supplements to improve your mental health as what she did movement therapy and art therapy and music therapy.

[@Koralene]

I got Lyme 4 years ago. I have Lyme brain like crazy. I am in college now, at 35. I just have to study aaaallll the time to make anything stick. It sucks