TOUCHED BY LYME: Katie Couric asks “What was your worst health scare?”

16th January 2013

katie couric

Tell her about Lyme disease now.

Television host Katie Couric interviewed celebrities with serious health scares this week. Then she asked the public: What was your worst health scare and how has your life changed since?

Sounds like a good opportunity to tell her about tick-borne diseases.

Click here to answer this question on Couric’s website.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.

 

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  3. NEWS: The UK’s Health Protection Agency bans its staff from upcoming Lyme conference
  4. TOUCHED BY LYME: A beginner’s guide to all things Lyme
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Comments

32 thoughts on “TOUCHED BY LYME: Katie Couric asks “What was your worst health scare?”

  1. Lyme Disease has prevented me from going to school and work, I had to medically withdraw from College a week before Finals, now I am taking Online classes. Everyday is a continuous struggle dealing with memory loss and pain in my joints. I no longer go out and drive, I went from being an independent college student back to relying on my parents for support. Some days I don’t make it out of bed because my body is so numb. I hope to continue raising awareness and money for Lyme Disease research online!

  2. Lyme Disease. Our Healthy 9 year old honor student, all star athlete and all around ball of fire daughter had her life take a path of pain, illness and disaster in 2006. It is 2013 and she is still struggling. We have traveled the country for help, including living for 2 1/2 years out of state for 7 day a week 7 hour a day treatments . Her life is full of IV’s , surgeries, struggle …. Lyme has altered her life, ruined her childhood and left our Family in Financial ruin …. Lyme is the worst Health Disaster we have ever faced and still do …. it would be well worth your time Katie to look into the devastation … Thanks !

  3. Lyme is the most frightening health concern in the country. The number of cases reported to the CDC is just behind Aids. BUT, according to the CDC, because the disease is so seriously underreported, the actual number of cases could be 14 times greater. it is underreported due to the colossal debate in the medical community regarding the severity of the disease, how to diagnose it, and how it should be treated. The Infectious Disease Society of America takes the most extreme view on one side and the International Lyme and Associated Diseases Society on the other. With the National Institutes of Health sitting in between. It should be noted that Britain initially stood with IDSA. It has however denounced IDSA and stands more closely with ILADS. Bird Flu and Hanta Virus are well publicized, even though few people will ever get either disease. Lyme is a much greater threat yet little information is available to the public and confusing information is available to medical practitioners. The threat is real. I went 22 years before being correctly diagnosed – and only after a second bullseye rash. My medical practitioner risked his license to provide the necessary long term treatment (2 years of antibiotics) IDSA claims people like myself do not respond to long term antibiotics. It is wrong. The two times I was taken off antibiotics my health declined. Each time I resumed antibiotics, my health immediately improved. I am neither alone nor uncommon. You will uncover a political quagmire, conflicting information and poor patient care from one side of the country to the other – and the most important health concern facing us today.

  4. First symptom 2007, fat lip, numbness and tingling by mouth and chin. Fall of 2009 I noticed my body seemed to be falling apart. November 2009,my legs got numb, then deep pain and weakness in them and my arms. After a few Dr’s and many tests, found out it was Lyme. Symptoms I had and a lot I still have. Constant leg pain and weakness, ankles feel crushed, heart palpitations, nausea, chronic fatigue,ringing in ears, hearing sensitive, eye floaters, numbness, body tremors/shakiness, neuropathy, brain fog, confusion, memory loss, feel ill all the time, depression, anxiety/panic attacks, headaches, short of breath, dizziness, lightheaded, GERD, insomnia, forgetfulness, chills, hot flashes, cough, plugged ears, mood swings, irritable, feel as though I am losing my mind, cry easy. EVERYDAY for 3 years this has been a constant struggle as it NEVER lets up. I am still ill, broke, and applied for ss disability. Lyme disease has sucked the life out of me.

    • All of the above symptoms you have described can also be attributed to Multiple Sclerosis. I have suffered from it for more than 30 years. Every 6 months I have many tests taken, including Lyme, but it’s not Lyme – it’s MS. Prior to a quantifiable test for MS, many people who had Lyme were diagnosed with MS, but that cannot happen today. Too many precautions are taken to assure it will never happen again. I have all of the symptoms you described and just last Novemeber was again tested for Lyme even though tests via MRI, spinal fluids and others confirm MS. Did your doctor ever even consider the problem may possibly be MS? I have found much annimosity when I suggest that, though it has happened. Peace to you, may you find comfort in whatever treatment you undertake.

      • Linda, I understand your concern and thank you for trying to help. The issue is that Lyme patients are misdiagnosed with MS quite often,. We know MS-like symptoms are common in Lyme, it even puts lesions on your brain in the exact same way MS does. Having known how awful Lyme is, and having seen people improve from antibiotic therapy by leaps and bounds, I think it’s important to keep an open mind with any illness. In hindsight, if I were diagnosed with MS rather than lyme and knew what I know now, I would try antibiotic therapy after an MS diagnosis just to see if the improvement happens. The proof is in the pudding. If no improvement happens, then seek out MS treatment, but at least Lyme will be ruled out before it gets even worse. Unfortunately Lyme tests miss a majority of neurological cases, and most people don’t recall a tick bite. Testing negative doesn’t mean you don’t have Lyme. It’s pretty unfortunate that such poor testing statistics are accepted by medical establishments as reliable when they are just the opposite. I think it’s hard sometimes for people to approach a possible Lyme diagnosis because it does hold such a negative stigma politically, medically, and socially.

        Both MS and Lyme patients are on the same team, they want to help others. That being said, please know I write this with no animosity at all. We are all people, not divided by different illnesses which happen to both be confusing, under-researched, and often unrecognized. If anything, it makes us alike, not different. And in the end, still, we’re all people :) Much more than an illness, science, or lack thereof.

  5. I went camping in a MO State Park in ’98. I never imagined an innocent trip would forever change my life. I soon became ill and had a bulls-eye rash. My Dr said it could not be Lyme. My health declined, and eventually was diagnosed w/MS. I saw 26 Drs(including Mayo Clinic) over 11 year period. 20 of these Drs. said “It was all in my head” inspite of abnormal neuro exam, nerve conductive study, and elevated white blood count. The scariest time was losing all feeling in my body, seizures, the ability to read, write, understand language. I was dying, and my next diagnostic test not for another 3 months. My friend went back to my initial hunch of Lyme, and got me to an LLMD. I must travel 6 hrs to this Dr. as no one in St Louis will risk the loss of their medical licence treating beyond current guidelines. I have been making this trip 3 1/2 years. I have lost my livlihood and am now disabled. I have regained cognitive function, The MS, Parkinsons, Alzheimers symptoms much improved. This has come at great expence, as my medical is currently $14,000 a month. 30-90 days of antibiotics back in ’98 would have prevented this suffering. Now, I am morally obligated to prevent it from happening to others.

  6. Lyme Disease has put my life on hold for the past 2 years. Diagnosed 11 years ago, periodic monthly IV’s have pulled me through…along with anti-biotics. That changed drastically 2 years ago as I literally fell over twice in school while working with a special needs child. Since that very scary episode, I have strived every hour of every day to regain my physical and emotional well being……that moment has put my life on hold…and I pray this disease and recognized and treated appropriately as so many of us are suffering………

  7. Lyme Disease. Its real and chronic. Left untreated it can cause an array of other serious illnesses. This disease has devistated my life and now some members of my family. The most difficult part of this illness is that proper treatment is hard to obtain and very little is covered by health insurance. We you read this, you will notice that all our stories are very similar. Mine is that until 2010, I thought that I was healthy. I went for physicials all the time and was up on mammograms and OBGYN visits, went regular to the dentist. I would say that I was very in tune to going to remain healthy. But I always had this rash on my back and would ask at every office visit for the physician to look at. All the physicians told me it was some type of dermatitis. Well, since they all said that, and I had nothing else wrong, I did not persue this any further until June 28, 2010. Yes I vividly remember this date and always will. This was the day that my body starting to die. My first symptom was the fatigue… then the severe vertigo where I could not get out of bed for hours then came the 10+ pain that was drop to your knees pain. Doctor after doctor, fighting with insurance companies for MRI’s, nothing. One doctor placed me on steriods. When in doubt, doctors always go for the miracle drug, steriods. Artifical energy and all that fack stuff. I finally got into see an rheumatologist who ordered all the right blood work. Guess what, I tested postive for lyme but he said and did nothing more. You see, the medical community does not acknowledge that Chronic Lyme even exists so why bother treating it. I had to return to my PCP, it was obvious that she spoke to the rheumatologist and her comment to me was: “We in the medical community do not treat Chroni Lyme”. I said but why, I am very sick. She just explained that there was nothing that she could do other than offer me pain management. This was the doctor that almost killed me by putting me on steriods. I then got on the internet, pretty much on my death bed, to find a Lyme Literate Doctor (LLMD). Found one and had to wait 3 months because of me being placed on steriods. By the time I got to that appointment, I was seriously one foot in the grave and no treatment at all. I had pneumonia, EBV, Lyme, Babesia etc. A entire mess of the diseases caused by a deer tick. Finally I found someone who can take care of me and yes, this LLMD did but the cost was devestating to say the least. 1st appt was almost $2,000.00 plus labs. Then came all the intramuscular injections of bicillin, rocephlin, MG and B12 plus zithro, doxy, biaxin, Mepron to just mention a few. This went on for about 11 months and then I found myself broke. I could not longer afford to keep going. I had some cognitive issues at this point, not sure what that was from but needed to see a LLMD neuro. Also had some heart issues and needed to see a LLMD Cardio. The list just goes on. I was not able to continue with the treatment above and sought out another LLMD that treated with oral meds, supplements and holistically. 3 months now into his program, I am starting to feel somewhat better and the cost will not break the bank either. But if I had the money, I would have certainly continued with the 1st LLMD because I felt that I was getting better quicker. Now, I am in it for the long haul. It is a heart break of a disease and just recently my youngest son was diagnosed with Lyme. As a mother, I am devestated to say the least. He will have a difficult road ahead of him as well. Katie, there is a huge lyme community and we are posted on so many different FB pages to help one another get through the worse of times. If it wasn’t for these amazing people, I know that we all feel the same way, I probably would have had a breakdown because there is no one who knows the struggle as a lyme patient. If you choose to do your illness on Lyme, You will have a huge turnout. My thoughts are that Chronic Lyme will forever be on the rise. It will reach epidemic levels and only until this point will CDC and NIH respond to our illness. Its funny when one looks at a vets chart on lyme disease and what states it hits and then lyme disease for humans because it is so very different. Our dog had lyme disease, so if she had lyme disease and was our house dog, sad to say, but my entire family will have it. The more publicity that Chronic Lyme gets the better for all the lymies. Yes, that’s what we call ourselves “Lymies”. I really could just go on and on but if you want to learn more about Chronic Lyme Disease, just goggle it. It is not just a medical struggle to get a physician to treat us, it is a political struggle as well not to mention the Big Insurance companies that do NOT want to pay for someone who is so very sick. I will end in saying that I was under the belief that when a physician finished their interships that they all took an oath to care for those of us who are sick to their best abilities wheither on not payment was rendered. Hum…….. I know a several who should lose their license to practice medicine. Many physicians turned me away knowing how very sick I was and still am. Thank you for taking the time to read my personal struggle with this disease.

    Maria Pursel

  8. I’m 21 years old and have had my entire life taken over by Lyme Disease. Countless medical leaves from college, unable to hold down a job, the loss of my not only my social life but my life as a whole, the list goes on and on. It’s been surgery after surgery, treatment after treatment, year after year with no success in relieving my pain. I have to receive nutrition through a port in my chest because I’m unable to keep down any food. I’m too sick to eat, walk, talk and even think most days. This is an epidemic that’s destroying the lives of millions but is kept so quiet and so controversial, while everyone is arguing over whose right and whose wrong, all of us patients are suffering. I wouldn’t wish this upon anyone in the world. Lyme awareness needs to spread and I believe if I can help that in any way, then my sickness is worth every agonizing second.

  9. Lyme Disease! I’ve been sick for 7 years. I’ve spent at least $100,000.00 of my own money on treatment. I spent one entire year laying on my couch writhing in pain. I used to be a healthy, hardy, outdoors woman. I biked and hiked every weekend. Now I just want to be able to make it to work so I can afford my treatments. I travel 300 miles round trip to see my lyme literate MD because the doctors in my area tell me there is no Lyme disease on the central coast of California. I was misdiagnosed for two years, poisoned with prednisone and accused of being a hypochondriac. Each of us with Lyme disease has a similar story. We need help and support, not criticism and denial of our illness. By the way, I’m too sick to go to work today.

  10. Lyme and co-infections have devastated my health, privacy, life, liberty, assets, vocation and property. I am a (RN) w/ unlawful governmental retaliation, interference, and taking of my rights, liberty, property, healthcare, housing, assets, transportation, telecommunications, continuing and professional education, community life, and other – w/ unlawful discrimination, harassment, humiliation, intimidation, coercion, manipulation, segregation and isolation – my minor child, and myself, denied our individual human and civil rights, privileges and protections under (ADA) Federal law during, and because of, our association and relationship w/ “ethical” Montana physicians and their “referred” qualified out of state Lyme/Assoc. Diseases literate Specialists denied their “warranted” treatment plan of care and their “warranted” referrals to Columbia, an Adult and Pediatric Lyme/Assoc. Diseases Medical Center.
    After tick bites in Montana, after misdiagnoses of Bull’s Eye, Rocky Mountain Spotted Fever, Erhlichiosis and Bartonella rashe(s) and Babesia , denied rights of (CDC)-recommended prompt and proper prophylactic antibiotic and parasitic treatment followed by serious w/ life-threatening health consequences.
    Then during DIVORCE, w/ unlawful (ADA) Discrimination/victimization(injury), Abusive Harassment and Malicious Retaliation with Fraud, Deceit, Trickery, Waste and Abuse Against Federal Agencies w/ UNLAWFUL TAKING of PRIVACY, MY ASSETS, CHOICE OF US HEALTHCARE, LIFE, LIBERTY and PROPERTY with HUMAN and CIVIL RIGHTS ABUSES – while, and because of self-pay, choice of, and “warranted” out of state US Lyme/Assoc. Diseases-literate Specialists and Columbia University’s evaluation and treatment plan of care, HELD HOSTAGE IN MONTANA, DENIED RIGHTS OF (ADA) ACCOMMODATIONS CHOICE OF and SELF-PAY HEALTH CARE UNDER FEDERAL LAW.

    EVEN FURTHER, DENIED MY INDIVIDUAL RIGHTS OF CHOICE of Continuing Professional Medical Education Credits endorsed under the US Dept. of Education, (ILADS.org), Columbia Univ. Medical Center, and others – and thus, w/ unlawful-Discrimination, Abusive Harassment (humiliation, intimidation, threats, coercion and manipulation) and Malicious Retaliation under federally-protected classes and federally-protected activities under Federal law.

    With unlawful taking of privacy, healthcare, assets, life, liberty, personal and real property by court-appointed doctors and Judges, forced solitary isolation Involuntary Commitment w/ abusive, dangerous and ineffective forced restraint, assault, battery, invasions of privacy and bodily integrity w/ forced (IM) psychotrophic drugging, dragging and gagging for use of deliberate false-fabricated mental illness w/ self-incrimination and violations against protections of double jeopardy, “The courts have ruled she seeks excessive and unnecessary health care. She is Gravely Disabled. Dx: Delusional Somatic type. She requires solitary isolation in The Montana State Mental Hospital for up to (90) days or longer as determined by the courts with conservatorship and psychiatric examination and professional testimony by court-appointed (federally unqualified) Bachelor and Master Degree (DPHHS) public health officials.

    NEARLY DIED FROM COMPLICATIONS OF ACUTE, 2ND and 3RD Stage Complications of these diseases, denied prompt and proper (CDC) “warranted” antibiotic treatment, FOLLOWED BY 2ND and 3RD STAGE RELAPSES AFTER UNLAWFUL GOVERNMENTAL INTERFERENCE AND UNLAWFUL TAKING OF MY RIGHTS of CHOICE of SELF-PAY OUT OF STATE Lyme/Assoc. Diseases literate Specialists treatment plan of care and rights of accommodations under (ADA) Federal law.

  11. What was or what IS still my worst health scare….? I was diagnosed 5 years ago with Lyme disease and its co-infections. Since then my life has been turned upside down. I am still struggling this day trying to fight this horrid disease. The worst part of it is the denial of it being chronic, the misdiagnosis, and drs are just clueless of how to treat it. I am 35 years old and i feel like i am 90. The only thing that keeps me going are my 3 young children and very understanding and loving husband. Now i WAS a healthy young vibrant woman until one day gardening i was bit. The er dr told me it was nothing and sent me on my way. I did not get any medicine until about 5 months later because i was severely sick from what i now know was ehrilichia and babesia. The dr treated me for it and i still was not better so after 5 yes 5 tests for Lyme disease i finally came up positive for it and they started treatment. That also failed so i went on a few other abx and finally a PICC Line for 1 month. When that month was over, because the IDSA said i should be cured, the dr sent me on my way even though i was balling my eyes out telling her i was not. Here i am 5 years later, 2 PICC Lines and thousands of dollars worth of medicines because my dr is not allowed to treat me the way i need to be treated which is long term combination antibiotics, because of the IDSA guidelines. It is a highly misdiagnosed disease that is and should be known as an epidemic! People are dying and there is nothing we can do about it until someone does something for us!!! Please help us……. Please educate yourselves and protect yourselves. We need help.

  12. First of all, thank you dearly for taking this issue up. I am inclined not to write about this, as it takes too much out of me; but you need to hear as many stories as possible. We are often quiet because we are ill and because we save our precious little energy for the high priorities in our lives. Everything, every little task every little thought costs energy and thus must be considered carefully before undertaken, as each day starts out with a very limited amount of energy. (Look up “spoon theory” by Christine Miserandino, this will explain it well)
    I know exactly when I got Lyme’s, I was so ill for 4 weeks straight with what seemed the worst flu symptoms. My Dr. tested for Lyme’s with two different types of tests which both came back negative, so he insisted on NOT treating me despite the the overwhelming symptoms (no bull’s eye though, and at that point, he seemed to think, that was neccesary; he also seemed to think the tests were conclusive…he was wrong! He was very wrong!) My symptoms improved and I was better for a while, although my joints began to hurt. I used a cane for 7 years, some Dr.s seemed to think I was an impossible case and I suppose they may have been relieved when I no longer had the energy to go to them. We moved to a one level house, as I no longer could use the stairs; our realtor suggested a Lyme Dr; I went and he diagnosed me. After 1 1/2 yrs of treatment, that was so terribly tough and brought back the symptoms at times intolerable; I had two good years. I then had to have my knees replaced (at 39!!) as all my cartilage had ripped to shreds for some unexplainable reason (they couldn’t blame Lyme’s bc they don’t know enough about Lyme’s) This double knee replacement was the hardest thing I have ever gone through. It also brought on Fibromyalgia so I now suffer from chronic widespread pain in joints and muscles on top of the Lymes and the Diabetes (juvenile, since age 14) The surgery also brought my Lyme’s symptoms back so I had to go back into treatment, daily for 6 months straight, EVERY day…the sad part was that my Lyme’s no longer responded to the treatment and there is nothing else they can do for me….I have Chronic Lyme’s. The hardest thing?-The loss of me, as I was, healthy, dancing, gardening, walking….I am however blessed with a positive outlook on life and WILL NOT ever let it win; I find ways and I am also blessed with an understanding family..don’t ever underestimate that value! I am also lucky that we do not depend on me holding a job,……I couldn’t hold a job. So I do what I can, when I can, here at home; I am a writer now. Thank you again for taking this up; PLEASE find a cure……………………………………………(I am now 46, this started 15 years ago!)

    • My Daughter, Son & Husband have all contracted Lymes. My daughter at age 5…we did the antibiotics twice…and under the advisement of our LLND, we did 5 months of the Cowden protocol. Look it up. It worked….that was 4 years ago. We have not seen any symptoms since. In December of 2013 my son became violently ill, and was diagnosed with Lyme disease, we are currently treating him with the Cowden protocol. It is a slower recovery and from how my daughter responded to it…we are hopeful that our son will respond as well as she did. My husband was diagnosed in February of 2014 and is also currently taking the Cowden protocol. Feel free to email us for continued updates on their recovery. Our LLND has much better success overall with this protocol over the antibiotics. Hope you find this helpful for you…and good luck in your journey.

  13. Chronic Lyme Disease. My, used to be energetic 13 year old son, has finally been diagnosed with lyme. Our story is so similar to others that I read in these comments. It is so sad to see such a healthy person bedridden, loose friends, and can not be able to get over this illness. A story on chronic lyme disease might just help so many others out there that can not get an accurate diagnosis.

  14. Lyme Disease’s unpredictableness and the medical field’s attitude toward my son(age 10) having Lyme Disease. It’s sad, infuriating, frustrating, and an eye opener. You really have to look out for yourself and your family.

  15. We are living our worse health scare and it all started with a dirty little tick 31 years ago. Because of misdiagnoses for 29 years, I unknowingly passed Lyme disease onto my two boys. This is where the hell begins. It has been a long, lonely road to getting well. I never thought in a million years that I would have to fight so hard to get children healthy. I never thought there would be so much misinformation on a disease. Lyme disease nearly took the life of my youngest son. It took his friends, his sports and his academic interests. Life will never be the same for him. There are now 5 people diagnosed in my family, life won’t be the same for any of us.
    Katie- please take the time to educate yourself about Lyme like the way you have with cancer. We need your help educating America. We also need better testing and more doctors. I wouldn’t wish this disease on anyone!

    • My story is so similar to yours, Ktdommer. I was infected 24 years ago with Lyme and only diagnosed 2 1/2 years ago. Because of misdiagnosis over the years, I passed the disease on to my two daughters and now we are all fighting this ravaging disease and the co-infections that the dirty little ticks spread with their bite. Thank you, Katie for listening and please tell our story so that America will be enlightened to just how widespread Lyme is and how to find proper diagnosis and treatment!

  16. I was a student at Uconn, at at 22, it is really hard to go through something as horrible as lyme disease and other tick borne infections. I have lyme,bartonella, babesia, erhlichia,and mycoplasma. After going to nearly 40 doctors and spending thousands of dollars out of pocket, and a Picc line I am still very sick. I refuse to be put in a box by doctors and be told that its a psychological issue anymore. I almost DIED from all these tick born infections, and I pray to god someday that we all get better and that doctors can learn how to treat the diseases. Together we can spread awareness about this awful illness that has made me put my life on hold.

  17. As with all of these heart breaking stories, my twenty-six-year-old son too has had his life ripped out from under him because of an unnoticed tick bite many years ago, most likely camping as a Boy Scout. He went from being a very energetic kid to a lethargic and depressed one seemingly overnight! He was misdiagonsed for years and mis-identified by his schools and sadly his parents as being ADD and an unmotivated student. Thousands of dollars and miles travelled later, it has been fourteen years since his symptoms have devastated him and we are no closer to a cure. I lost my brother to AIDS many years ago, and the helplessness I feel in helping my son deal with Lyme Disease is equal to the hopelessness I experienced watching my brother die from another epidemic. Thank you…

  18. Hi. Lyme disease is horrible & the numerous co-infections you can get w/it are just as debilitating. I have chronic Lyme, babesia & bartonella. Its stolen my career, all my money, my friends—my LIFE from me! FOUR negative Lyme tests at 3 different labs! All along I was positive! NEVER even knew I got bit! We’v traced it back 17 yrs so far. I used 2b a smart, strong, independent, outgoing woman. Now-I put something down & poof-it’s gone. Suddenly a word as easy as “regret” I can’t say-then suddenly-I can. I have pain 24/7-no matter what I do. I’m always feeling “sick.” Motivation is gone. Even after 2 yrs of treatment (sometimes 4 antibiotics at once)-I just feel sicker & the pain goes on. Always so tired..but can’t sleep. Depressed all the time & totally broke. This disease NEEDS2b recognized & taken seriously. Please help? TY!

  19. its awful disease Lyme … at first everyone thinks your putting them on ….until you almost die …. which pretty much happened to me 2 different times …. the fatigue is the biggest problem for me …. also the pain level is just off the map somedays ….. at first I just figured I would be dead in a few monthes …. however having a wonderful Doctor who has worked with me for years is the main reason I’m here …..also my wife has been beyond great …. I hate it for her as I’m in living hell so many days …. lyme disease is a bad disease which needs alot of researce and public awareness which it just doesn’t get …. tom

  20. CHRONIC LYME DISEASE & VECTOR-BORNE DISEASES:

    Katie, I was bitten 43 yrs. ago by a TICK never seen, no bullseye rash or any type of other unusual rash. went to 1st dr … you have MONO. i was bedridden for 2 wks. taken meds they prescribed.

    well, i never got well; kept doctoring straight for 35 years getting every diagnosis possible:

    mono, chronic fatigue, fibromyalgia, irritable bowel/bladder, migraines, painful periods, extreme sensitivities to: lights , glare, reflection, CHEMICAL SMELLS, some foods, cleaning products, and surgical tape.

    finally i heard about lyme disease ata meetng discussing fibro, CFS, MS, ALS, parkinsons, aLzhemers”/dementia, ETC. since there are 300 OTHER diseases MIMICKING LYME.

    worked almost 30yrs misdiagosed then left/quit with no retirement benefits.

    filed for SSDI, disability insurance work benefits ; took 5 yrs. of hELL tobe approve on 2nd claim after m ylawyer QUIT me 4 yrs. into this! much more to tell, running out of room!! plus keyboard problems uffda

    BETTYG, IOWA LYME ACTIVIST

    i tried to post this at katie’s site without success .

  21. CHRONIC LYME DISEASE & VECTOR-BORNE DISEASES:

    Katie, I was bitten 43 yrs. ago by a TICK never seen, no bullseye rash or any type of other unusual rash. went to 1st dr … you have MONO. i was bedridden for 2 wks. taken meds they prescribed.

    well, i never got well; kept doctoring straight for 35 years getting every diagnosis possible:

    mono, chronic fatigue, fibromyalgia, irritable bowel/bladder, migraines, painful periods, extreme sensitivities to: lights , glare, reflection, CHEMICAL SMELLS, some foods, cleaning products, and surgical tape.

    finally i heard about lyme disease ata meetng discussing fibro, CFS, MS, ALS, parkinsons, aLzhemers”/dementia, ETC. since there are 300 OTHER diseases MIMICKING LYME.

    worked almost 30yrs misdiagosed then left/quit with no retirement benefits.

    filed for SSDI, disability insurance work benefits ; took 5 yrs. of hELL tobe approve on 2nd claim after m ylawyer QUIT me 4 yrs. into this! much more to tell, running out of room!! plus keyboard problems uffda

    BETTYG, IOWA LYME ACTIVIST

    i tried to post this at katie’s site without success .

  22. Dear people who have posted above: Please copy and paste your responses and click on the blue link in the above article that reads, “Click here to answer this question on Couric’s website”. There are some great responses written in this comments section. Make sure Katie sees them! She won’t see them here.

  23. I have been battling Lyme for 16 years. It had changed my life. I can’t get treated and I can’t get doctors to take me seriously. The one doctor I found was too far away. The trips for treatment made me worse. I can’t do a lot of things that I want to, simple pleasures in life. What I wouldn’t give to be able to ride a roller coaster again. Our to go for long walks without my cane. And I’m not as bad off add others. I know that lyme will eventually kill me. Do you have any idea what it is like to know something is killing you and no one will help you? If I had cancer or heart disease the doctors would do everything they can, but when you say lyme suddenly nothing can be done and I’m crazy. My body is begging for help and no one is listening. Instead the medical community and the government turns a blind eye to a dying community. I’m in extreme pain, my eye sight is getting worse, I have chest passions that can’t be explained, my immune system sucks, I have memory fog, I can’t digest food properly, and the list goes on. I am to tired and sick to actively fight for help and the people who can fight for us refuse. They seem to be content with letting us slowly die.

  24. All our stories are the same. We have a difficult time getting diagnosed with lyme and co-infections and when we finally get the correct diagnosis, (and many never do)we are so chronically ill, severely depressed and BROKE that even if we are able to find and then afford the long term treatment needed to address the symptoms, many of us simply do not have the energy left to fight it and are destined to suffer for the rest of our lives. Because of the two schools of thought and intense debate about chronic lyme in the medical community, there is very little research money available to develop accurate tests and study the best treatment options. Because the bacteria systemically migrates from organ to organ and has the ability to hide in our cells and wait out the antibiotic treatments, we all go through ebbs and flows with the disease and never know which organ it is going to affect next. I live in upstate NY and almost everyone I know has a family member or knows someone with chronic lyme disease. I was a happy, healthy 60 year old Grandmother of three, looking forward to retirement to play with my grand kids, garden and ride my pink motorcycle as much as I could. That dream has been severely curtailed and very difficult to fulfill for the three years I have suffered from this debilitating disease. Katie, this is my worst health scare and continues to be my worst health scare. I live in a lyme endemic area on 30 acres and I fear for my children and grandchildren. We need help!

  25. Lyme Disease, Babesia, Bartonella, Mycoplasma… The list of tick-borne disease is never ending. In Novemeber of 2012, I was diagnosed with Lyme Disease, and then in January of 2013 I was diagnosed with Babesia and Mycoplasma. I’m only 15, and it’s affected me so much. My family has had to spend so much money to try multiple different treatments that usually don’t work, it’s hard to concentrate in school, I shake badly, the syptom list is long. Most people don’t realize how serious these disease are, and it’s very unfortunate. Many of my friends say things like “Oh Lyme Disease, that’s easy to cure. Why are you complaning?” and it hurts. They don’t know what we Lymies go through every day, and how it’s not as curable as people think. I urge everyone to spread awarnees of Lyme and the other co-infections so that everyone else can avoid contracting these diseases!

  26. So many have been and will be touched by Lyme, Reading these stories bring tears to my eyes. I like to use the term “Lyme Warriors”.Thank you to the person who coined it! Unless you truly know the pain and suffering that Lyme Warriors suffer you won’t understand the would of Lyme. With our world so full of diseases, cancer, MS, just to name a few. Lyme is not recognized as real to most and I’m sad to say that I’ve heard medical personal say co-infections like Babesia is not a real disease. Thank you so much for touching this very real, very painful life altering disease. Fight on Lyme Warriors!!!!

  27. There are many people suffering and dealing with Lyme disease and many more struggling with symptoms that can’t be explained. The true answer to this problem is informing the public so they can take preventative measures and teaching the medical profession the many signs and symptoms of the disease and how to treat it. This has and still is an uphill battle and it can’t be done effectively until the CDC endorses the findings of researchers and the Lyme literate physicians. There are so many people and families out there with their stories to share it would take more than one show to explain how this disease affects humans as well as our pets. What is needed is a panel of researchers and physicians, who are dedicating their talents and lives to this disease, to share their scientific findings. These are the individuals that can do the most to help those who are currently battling this awful disease or in the process of trying to find out what is wrong with themselves or their loved ones. They are the ones to teach your viewers how to prevent it in the first place and how to protect their children from it while playing and enjoying the great outdoors. I have been battling chronic Lyme disease for over three years and it has been a difficult road but not as hard as: watching your children battle it (two of my four are being treated), listening to the stories about individuals that have the symptoms but have gone so long without being diagnosed, knowing there are people out there that have it and can no longer afford care because of lost income or depleted reserves due to medical costs, or feeling like you want to scream from the roof tops how to prevent it but the cries go ignored because health officials downplay the epidemic. Our hope is you can lift up Lyme disease awareness as you did with colon cancer.

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