TOUCHED BY LYME: Katie Couric is asking for your Lyme stories

2nd September 2013

katie couric

Katie Couric's talk show, "Katie," seeks people with Lyme disease to tell their stories on a future episode.

From Katie Couric’s website:

Be on the Show

 

NOTE: as of Sept. 4, the Katie Couric website has removed the link for contacting the show about Lyme disease. 

 

Related posts:

  1. TOUCHED BY LYME: Katie Couric asks “What was your worst health scare?”
  2. TOUCHED BY LYME: CDC’s “Lyme stories” leave out the big picture
  3. TOUCHED BY LYME: "Project Censored" lists Lyme disease epidemic as one of 2011′s most under-reported stories
  4. TOUCHED BY LYME: Rash of Lyme stories in national media
  5. NEWS: Canadian siblings stopped in tracks by Lyme disease
Comments

39 thoughts on “TOUCHED BY LYME: Katie Couric is asking for your Lyme stories

  1. I’ve had Lyme symptoms as far back as high school. I’ve always been a caring happy outgoing person! But knew something was wrong inside my body .years later I moved into a studio apartment which used to be a textile mill. It looked very nice but little did I know there was black mold due to a leak in between the walls,I lived there for years slowly getting sicker and sicker! To the point I was in bed 18 hrs each day! The mold had lowered my immune system and was allowing the Lyme to really cause havoc in my body! However I had no diagnosis threw these years and being a smart young caring woman I enrolled in a nursing program! It took all my will power to complete the coarse but I did!! However I am 28 years old and all my hard work aside I’ve been reduced to collecting diss ability for about a year now! Most of which is going to out of pocket cost for my MANY Dr. Visits! I spend a lot of my day helping others with the things I’ve learned and to help to stay positive despite the constant battle inside my body! Thanks for listening xo 2 minutes ago · Sent from M

    • It’s so sad reading all these posts. I have Lyme, but when I read about others’ problems, I realize I haven’t had it too hard – all things considered. I never lost the ability to walk or talk. Katie should have my doctor on her show. He is a Lyme specialist. His website is http://www.restoreyou.net The worst thing for me is the fatigue because I’ve always been a person who works circles around everyone else. I have Bartonella too (Cat Scratch Fever) which causes hot flashes. I break out into a cold sweat and I’m hot and cold at the same time. One part of the solution to this epidemic is to reduce the deer population. In the early 1900′s, there were approx. 500,000 deer in the US. By 2000, the population had grown to 30 million. They are an edge species, hiding in the woods and grazing in your yard, carrying the ticks that make us sick. Doctors say, “There is nothing wrong with you. It’s all in your head.” Antibiotics don’t work because the Lyme bacteria simply go into hiding. Best book I’ve seen: Cure Unknown, by Pamela Weintraub, a Lyme victim. Praying for everyone with Lyme.

    • I’ve struggled with my health since I was in 7th grade. I went from doctor to doctor for the longest time and nobody knew what was wrong with me. I felt so defeated every single time a random treatment didn’t work because I knew It meant that I was about to be told I couldn’t be helped. Lyme wasn’t brought up until last year and although I tested negative the doctor knew right away this is something I’ve suffered from for a long time. Now in my senior year in high school, I’ve spent the last 9 months on antibiotics and little progress has shown so far. The worst part about Lyme is that it took up so much of my teenage years. I had to stop cheering, taking guitar and piano lessons and could only make it to school on a good day, and the idea of going away for college is no longer an option. Fatigue gets to me the most. I can be doing okay and then all the sudden next thing I know I’m fighting to keep my eyes open. I never know what it’s going to be like when I wake up every morning. The pain shifts everyday and sometimes can even change within a couple minutes. Nobody understands how bad it is!! My friends and family have sympathy but you truly don’t understand unless you go through it

      • Kelsey-

        If you haven’t found a Lyme literate doctor yet to help you, do it now. Start at ILADS.org. This disease, and other tick-borne illnesses, can be controlled. It can be complicated and difficult at times, but you will slowly get your life back. I went improperly diagnosed for nearly four years. Almost three years later, I am much better despite still peeling back the layers of health issues Lyme and a co-infection caused. You can get there, too. Godspeed.

        Janelle

  2. OK, you have heard it a million times. There are a million people who could tell you the same story. Remember that Katie. You will only get the tip of the iceberg on this show. Yes, I have had Lyme and Babesia. I nearly died. I am only alive due to a specialist in Washington D.C.. I spent over 100G. on meds., and am still working on it. I have a blog, 10 years worth of medical journals, tests, and reports from doctors all documenting my struggle for the past 10 years. I have had the disease at least 30 years. I was born on LonG Island, and moved outside Boston, then to the Berkshires and now in Maine for the past 25 years. All highly epidemic areas. I was born on LonG Island in 1960. To some, in the field, that may be significant. My story, or part of it, can be found at mainelymelady@blogspot.com.. I am a research freak. You can Google Maine Lyme Lady as well, but you cannot tell my story without me! :0 I, and many others are counting on you to get the story straight. It means life or death to millions of people around the world. A heavy load, Katie.

  3. Hi Katie, I got sick in the early 1990′s. So did my kids. They all slowly got better but I stayed sicker and just got sicker. It took 15 years and over 100 drs and ER visits to get diagnosed. By then Lyme has diseminated and it almost impossible to get rid of. (Despite what mainstream drs will say) Thank you for doing this show and I hope that by this finally coming into the maintream news that others will be saved a lifetime of sickness.

  4. Our story began in 2006 when my husband started getting severe migraines. This went on 4 about 2 yrs. Dr.s continued saying it was just migraines! He started having numbness in his limbs, still migraines!! With research, we pushed Lyme but got nowhere. In 2008, I woke up to my husband confused, not knowing me or our children and unable to speak. Called 911 and he was transferred 2 a bigger hospital. With a spinal tap, they found what they call Lyme meningitis. Finally, a answer! Dr said he was lucky to be alive. He was put on a port of antibiotics. About a yr later, I became ill. Many Dr visits later, they thought I had MS. While visiting my husbands Lyme Dr. He told me he thought I had Lyme disease. I got tested and I was positive. So now, what about my 3 boys!!! Did I pass this through pregnancy?? The answer is YES! All 5 of us have Lyme disease. We all struggle in different ways, on a daily basis! I just quit my job of 14 yrs. We have been blessed with help from our community, family and our church but this disease has taken every penny we have! Our Dr. Visits are paid out of pocket. We have sold all the extra’s we had, our camper and our children’s 4 wheelers and dirt bikes just to have extra money! Our children have never been on a vacation and it breaks my heart because they don’t understand! This disease is very real and it has robbed us from a normal life! Just looking in my medicine cabinet makes me sick to my stomach. Giving my babies all these meds and not really knowing if I am doing the right thing just tears me up! I try to stay positive, and tell myself things can always be worse! I have put this in gods hands! I can’t do this on my own! Thank you for caring enough to do a story on Lyme Disease!

  5. The biggest thing people don’t understand is “she looks so good”. I would love to invite them in on a day when the “fog” is peaking, my words are slurred, when I’m unable to hold things in my hands. When I fall down stairs up stairs or on level ground.When my arms or legs hurt so bad tears roll down my face. When mornings begin with vomiting and days end in confusion. The anger/rage that engulfs your mind, that was never there before…. The indignity of people whispering ” what’s wrong with Debi “. But most people not caring enough or too afraid to “get involved”. Peace

  6. I had lyme disease in 2004 and my daughter Bridget had it when she was in first grade, in 2006. We both felt very tired, incapable of functioning, really, but no other symptoms. In my case, a bulls eye rash at the site of the bite appeared and turned into a skin infection for which I had to be treated with IV antibiotics at the hospital. The doctors did a lyme test while I was there, since we live in MA, and it was positive. I took doxicyclene for a few weeks and recovered.
    My daughter’s only symptoms were a headache and extreme fatigue (which as you know is bizarre for a healthy six year old). But no one seemed to know what was wrong with her. I took her to the doctor, he said it was probably a virus. I took her a week later, they didn’t know what to say. She didn’t have the “usual” Lyme symptoms of sore joints and fever, or any rash. Thank God one morning she woke up with several bulls eye rashes covering her torso–it was such a strange rash to see! Since we’d had a lyme experience before we got her tested and treated with antibiotics and she recovered. We were both really lucky we were diagnosed and treated so quickly!

  7. Lyme is scary. I owned a green catering business and lost everything. I worked 60-80 hours a week. I am much better. I am so happy that you are educating people about Lyme. I am a chef and know about great lifestyle changes that are helpful.

  8. Came down with extreme psychiatric symptoms, lost the ability to digest food, sleep (at all), lost 40 lbs in a month, had two hotflashes and was tossed into menopause at age 40, had sores on my tongue. Was bounced from specialist to specialist, put on SSRI’s, when finally my ARNP said “Maybe this is Lyme” and was on the phone to a Lyme doc right there in the exam room. Myriad of tests, diagnosed with late stage Lyme and Babesia with suspected Bartonella, put on 16 pills a day. Within 6 weeks of treatment, got my periods back, began to see the light. Was symptomatic and in treatment for 5 years. Two years later am well. Important to note that I never had a single complication from any of the medications, all liver tests were normal every month. Most important of all I never had a positive test for Lyme– I was diagnosed with other marker tests (CD-57). Quite possible I had the strain that had yet to have a test developed for it. Without my Doctor diagnosing using symptom presentation, and other markers besides a positive Lyme test.. I might have died.

    • According to Pamela Weintraub in her book, Cure Unknown, there are actually some 80 strains of Lyme. The Lyme bacterium is a spirochete as is the syphilis bacterium. If the truth about Lyme ever becomes known, I think there will be some parallels between the Lyme controversies and the Tuskegee syphilis project that kept something like 60 black men sick with syphilis even though a cure was available. The project was following the progress of the disease without treatment, always telling the men they had “bad blood.” One good thing Bill Clinton did as president was to officially and publicly apologize to those men, but all but 5 or 6 had died by that time.

  9. I likely had Lyme for almost twenty years, but was never seriously ill, so doctors treated random symptoms. Finally, I believe I was re-infected, aggravating the disease. Within a few months, I struggled to function; fatigue, insomnia, brain fog, aches, trouble walking, and trouble breathing were some of over forty symptoms. Having heard of and wondered about the disease, I asked my doctor to test. He looked at the results and said, “No way.” I then found a Lyme doctor who diagnosed and treated me for four years. After a two-year reprieve, I had to start treatment again, but hopefully will finish soon. What surprised me most were the inexplicable mental and emotional challenges, which were far harder to manage than the physical symptoms. During my interim time of health, I was able to write an encouraging devotional book (Healing for the Heart) to hopefully help others.

  10. I am a 56yr old mother and grandmother. I have been sick for years. In 2010 my brother had questioned that he had Lyme through an ear, nose and throat doctor in his health care that told him he needed to find a doctor to treat this. After months of trying to find a doctor someone gave him a doctor’s name in CT. He tested positive through Igenex Labs. He knowing that I was so sick begged me to go to CT. I waited for 2wks to get my test results back and sure enough I was positive for Lyme and co infections. My levels were so high that they(Igenex) registered me with the CDC in August of 2010. I started oral treatments. In November of 2010 I finally got okayed through BCBS to get a picc line. I only had it for 1 month and it was removed the end of December because of insurance and neglect from Dr. . I ended up back on oral drugs.

    It all started in 1997. I started with anxiety issues. Then joint and pain issues. In 1998 I dislocated my knee playing “old lady” indoor soccer. Then I ended up having issues and had to have a full hysterectomy. In 1999 I had to have emergency gallbladder surgery. In 2000 I had severe sinus and throat issues with 5 different surgeries for that. In May 2001 I was re bit by a dog tick in my garden. It was so bad I called my doctor and he prescribed amoxicillian and didn’t want to see me or the tic. In September I had a severe pain in the back of my head and neck. I had the so called “flu” with a 104.8 fever. The doctors told me I have arthritis in my neck from an old car accident and more antibiotics for the infection. They shot me up with cortisone. It did not help. The doctor said it wasn’t arthritis and he had no idea what it was. I went to a different ear nose and throat doctor because of my sinus infections. He did an MRI and told me that I had MS. Off to a neurologist. He told me it wasn’t MS and had no idea what it was. They prescribed me an IVIG, a 5hr iv drip to help with my low blood counts. Countless spinals and tests. At this point in 2004 I had new insurance and had to change doctors and hospitals. I made an appointment with the neuro dept. at Umass. As I laid across the reception desk unable to raise my head they told me I had some kind of immune disease, what one they didn’t know. a year later I had a “few” lesions on my brain. By 2008 I had over 30 something lesions. They were in my spinal cord and my left and right frontal lobes. I have had periods over the years with dementia, slurred speech, memory loss, walking problems and etc. They told me I have MS. I work for the town school dept and I could not use my scissors, stapler or etc. I did not know which way the letters went on a board.

    In June 2010 they started me on steroids for a week in the hospital to try and control my lesions. Expect the worse they said. And August was when I went to CT. I went back to Umass with my test results and they did new spinals and blood work and I tested negative for MS and Lyme. I stopped MS steroids which I found out later is the worst for Lyme. It feeds the Lyme.

    I stayed on oral drugs until I got a new primary care doctor in 2010. She was all helpful and everything made sense for Lyme but she wasn’t allowed to treat me. I told her the Governor signed a paper stating that doctors could clinically treat for Lyme. Her hands were tied and she felt bad.

    In 2011 I decided to get some info and the New England Lyme Center agreed to take over my case. I was not getting the care I needed for my co infections in CT. They were wonderful and treated me for both Lyme and Bartonella. In May 2012 my primary care which I had to go to for my blood pressure etc. said it was a waste of my money, that I have and autoimmune disease most likely from birth. I gave her 2 months to find what was wrong with me. I stopped all of my meds from the Lyme center. I told them what I was doing. The end of May I started with my old symptoms. this time in June I wasn’t feeling to well and it was the last day of school and I had my husband take to me to work. I had a very large seizure on the side of the road. He called an ambulance. When I got to Umass they said it was a silent migraine and sent me home with no tests or exrays. Back to the Lyme Center.The seizures were happening more often and that is when I decided to have the picc line put in July 16th, 2012. I have had it for 13 months and my lesions are disappearing, they are not in my spine anymore. My Lyme is pretty much gone but I am fighting the co infections right now still with picc line.

    My question to you after I have talked your ear off, would you be willing to sit and chat with me, my brother and a 20yr old that is fighting for his life right now. You seem to be the voice we have needed. I am not a very religious person but as of late things have been happening for a reason. I also believe if the CDC had added Igenex Labs there would be 100,000 more patients added to their list.
    Thank you for you time.
    Linda Plante

    This is a tragic situation and needs to be dealt with. Thank you for your time.

  11. Lyme affects more than a blood test, sometimes “rounds of treatments” don’t make it go away. Then it affects your entire world, depression, chronic fatigue, more depression because of joint pain. Only 20% of people bitten by a tick get the infamous bullseye rash. Does the public know these things? Not until they are infected.

  12. Just meet Kerry at her next doc appointment. Too bad I didn’t see this before. You would have had a great article. We went down, she had a seizure during the appt (all due to lyme) and we ended up in the ER down there (Mt Kisco)…

    She was finally diagnosed in 2009, traced back to 2006. And to think… she’s only 18 now! She lost her childhood, school, friends, growing up!

    Don’t stop at just NY…. go to all states, it’s everywhere! Up and down the east coast, west cost and all in between! We have friends (via on line) from almost all states. Go to Canada, it’s there. Go to France… it’s there. Go ANYWHERE… it’s there!

    Go invesitage Plum Island!

    Signed….

    Kerry’s Mom!

  13. Our daughter (age 5 at the time) got extremely ill about 5 weeks after having a deer tick bite. She was so lethargic and feverish for at least a week; and we were very concerned. We suspected Lyme, but the pediatrician told us that it was likely a virus, and not to worry. She told us to watch for unusual rashes. A few days later, our daughter had 8 bullseye rashes break out on her body. Our pediatrician was out of town, but the on call pediatrician said there was no way it could be Lyme with that many rashes, and not to worry. We called the emergency room, and they said that she could not be diagnosed over the phone. When we brought her in, they diagnosed her with Lyme. It was confirmed with blood tests a few weeks later, and it turned out that she also had Bartonella, another tickborne disease. She was treated with 8 weeks of antibiotics, on our insistence for a long course. (Our pediatrican said that all she would need was 2 weeks on antibiotics, and that she would never suffer from it again; we stopped seeing that doctor, as her approach was useless.) When our daughter was taken off the meds, she seemed better for a month or two; but then she started to suffer from joint pain in her knees. Back on the antiobiotics for a month or two until she improved; then off again, only for the pain to return in a month or two; we went through this seesaw treatment for a few years, with frequent relapses! Gradually her relapses became more severe, and two years later she had a terrible episode where she was unable to stand, bear weight, or walk on her own, due to severe pain in her hip joints; she cried all the way to the hospital due to the severe pain. The local physician who we had turned to for Lyme treatment is considered to be an excellent Lyme literate doctor, and he recommended that she be treated by Dr. Charles Ray Jones, pediatric Lyme specialist, so we traveled to CT see him. It was well worth it. After a lengthy course of treatment with a different combination of antibiotics than she had previously been prescribed, she recovered, and knock on wood, she has been pain free for the last four years. We know that there is always the possibility of relapse, but we are eternally grateful to Dr. Charles Ray Jones for his help! We know that he has helped thousands of other children who have suffered with this terrible disease. If others find themselves with Lyme, and not improving, or getting worse, I would highly recommend consulting a qualified Lyme literate physican. ILADS is a great organization, and a great place to start if you need info. Also be aware that there are differences between labs that do the diagnostic work, in terms of test reliability. The Lyme literate doctors know which ones to use. It is worth spending the money to get the proper information, however the expense involved for proper diagnoses and treatment can be significant, and a very difficult challenge for many with these terrible tick borne diseases.

  14. I am a 100% disabled vet, after dealing with Traumatic Brain injury for twenty years. I was diagnosed in 2002 with Lyme and Babesia, Epstein Barr virus, C. Albicans fungal infection, from a tick bite. I just never recovered, I have been to Lyme literate doctors who have given me high doses of extremely strong antibiotics to no avail. I have continued to stay sick for the last eleven years, at this point I spend most of my life in bed. Outwardly I look fine, and that is how people treat me as someone that truly is not sick. Well when you have this disease inside your body destroying your organs one by one. It is hard to convince people, so , I have gone pretty much underground and really do not speak or interact in society. I stay to myself, I do not speak to people about the pain I am in. I basically live on pharmaceuticals, that I am now addicted too. I have been sober for twenty eight years, outside of the medicine I have to take if I want to sleep for a couple of hours at night. This has been a horror show with all parties concerned Boston doctors(Best doctors in the world) that have no idea about Lyme and coinfections. Insurance has paid for ten percent of my treatment the rest has been out of pocket probably way over $100,000 easy. so, what do I think of medical treatment in the USA regarding this particular disease. I am not going to use that kind of language in this forum. Sorry to say, as more people get sick, and every person that talks to me about this, says they no someone that has been infected. This will become one of the worst epidemics the US has ever seen.

  15. I too was struck with lyme and several co infections. started with flu like symtoms then back and neck pain to severe pain in my feet that I could hardly stand. went from DR to DR .no one knew what was wrong. 1 Dr thought I had MS.As I grew sicker and sicker my mom spent hours on line researching. She was convinced I had lyme but we couldn’t convince the doctors. 4 lyme tests came up negative and I saw no tick or bulls eye which made my symtoms harder to figure out because lyme mimics so many other disease including ms, fibromyalgia,ALS etc..Months later I had hair and hearing loss, double vision. extreme fatigue,horrific nightmares,fever, swollen glands,irregular cycles, memory fog, extreme pain from head to toe. finally mom contacted lyme association and they led me to a LLD. after 8 months of treatment I was some better. Then went to Sponaugle Wellness Center in Flordia for 6 weeks. I was getting better till I went back home where we discovered toxic mold that was suppressing my immune system. Now I need at least more 3 weeks of treatment but out of money. I just want to be able to play with my 2 children again. I lost my health, job and as of labor day my home. I am now back with my parents. We need to make awareness about this silent killer. So many people are getting infected daily and have no idea how 1 bite can change their entire life. This should be in every paper, tv etc to warn the public. We need updated test so people don’t have to go untreated for so long. my daughter would not be sick today if only the dr would have given her several weeks of treatment at first sign. Dr told her she was heading towards a wheelchair. Check out Plum Island and maybe you will understand why this is a political issue and the government and CDC are dragging their feet on this issue. To fill your audience with lymies would be great!

  16. I am living in Florida, but was bit by a tick in Massachusetts back in 1998. In 2000 I was treated for Lyme out of my pocket because my multi medical issues. There was only two Lyme doctors in the state of Florida ( Miami and Clearwater! Once I got my antibiotics then I started being myself and doing outdoor stuff like bicycle riding and fishing. Up until this past February I was bitten by a spider on my forehead and this bit reactivated my Lyme disease but extremely worse than before! Lyme once treated still remains inside of you! I know from experience. Katie, thanks for the support and many people have different issues the deal with medically. It’s a tough road and unless you are family, friends have no clue and can not fathom what one really goes through. Stay positive and keep on trucking. Thanks for listening! :) I am one of those patients that the Lyme test comes up negative.

  17. I found out *last summer* I have been suffering from Neuropsychiatric Lyme for seven years–after being pigeon-holed into a humbling bipolar/post-concousal diagnosis. After being misdiagnosed, I was also misdosed and became suicidal, spending nearly two weeks in the hospital. I went from being a CPA (scoring the 5th highest on the exam in Oregon) to not being able to process reading into recallable memory, suffocating daily and nightly nausea, disorientating central nervous system vertigo, painfully debilitating head pressure, autistic-like sensory problems, unable to change clothes from washer to dryer without dry-heaving. I could barely “DO to BE” when a specialist recommended pain management therapy as a final resort. Years later, my doctors were surprised to discover I had Lyme, because they didn’t know it was in Oregon. Confirming it is in Oregon, it was also confirmed that I had a tickborn parasite, only found on the west coast.

  18. I created the following petition on behalf of the families devastated by Lyme disease who have witnessed first hand a community of physicians influenced by the CDC’s ongoing disinformation campaign aimed at promoting the idea that Lyme is little more than a nuisance disease.

    Petition: Calling for a Congressional investigation of the CDC, IDSA and ALDF (6,813 signatures and growing)
    https://www.change.org/petitions/the-u-s-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf

    From the petition site: (Quote from a physician on the front lines treating Lyme)
    “In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.”
    It’s all about the VACCINE
    It has become blatantly obvious that the CDC will go to great lengths to insure that Lyme disease remains within its narrow definition in order to fit the vaccine model. Chronic Lyme does not fit any vaccine model.
    The CDC has long known about the virulence and persistence of this spirochete focusing on a vaccine as the cure-all to this world wide epidemic. The late stage/chronic Lyme community has become collateral damage for a vaccine market in the course of a government sponsored initiative as Baxter’s phase III clinical trials are underway.

    Carl Tuttle
    Hudson, NH

  19. Ok, so it turns out after years of being sick (June 2000 diagnosed with fibromyalgia), and deathly ill for the past 12 months, that I have late stage Lyme disease.

    If you don’t have firsthand experience with Lyme disease, consider yourself blessed. Lyme is not what the medical community would have you believe. Lyme and its many co-infections tend to imitate several other different diseases and that makes it hard to diagnose. Since January I have seen a number of specialists.

    Infectious Disease Doctor: “Mr. Sadler, it’s definitely an autoimmune disease, so I’m sending you to see a rheumatologist and a endocrine doctor, oh and you tested positive for MRSA, here’s what will take care of that.”

    Rheumatologist: “I’m a pretty smart guy Mr. Sadler but I don’t think you have lupus, rheumatoid arthritis or any of the things I specialize in, but let’s run everything possible to rule in or rule out every possibility. Three weeks later; No sir, from my standpoint you are healthy as a horse, however, you have a nasty bacterial infection that the ID doc needs to look into”….

    Endocrinologist; “Let’s get some labs done plus a 24 hour urine analysis as well. In the meantime lets do an ultrasound to make sure the veins to your kidneys are normal – no issue there. Labs show an unusually high Cortisol level. Ok, next an MRI to see whether there’s an issue with the pituitary gland causing the high cortisol level. No sir, that looks perfect. Next we are going to do a CT scan on your adrenals. This just doesn’t add up, we are puzzled Mr. Sadler, your labs indicate “Cushing’s Disease”, but EVERYTHING associated is normal. You need to see an Infectious Disease Doctor”….

    Meanwhile during all of this, since April 24th, I have been “self-treating” for Lyme, Bartonella and Babesia with oral antibiotics and having noticeable improvements. June 21st, I get in to see a LLMD (Lyme Literate Medical Doctor). He spends an hour and a half with my wife and myself. Asks a lot of questions and taking a lot of notes. He believes I have lyme and at least 3 co-infections. So, they take blood and send it off to iGeneX and we wait. About a month later we get word that my tick borne tests have come back positive. Yes, the Infectious Disease doctor dropped the ball!!

    I hope and pray you or someone you love NEVER has to deal with Lyme. But just in case you have gotten a diagnosis that doesn’t add up, here is a list of my symptoms.

    Brain Fog
    Numbness/Tingling in feet
    Legs and feet feel “Heavy”
    Numbness/Tingling nose and cheek
    Headaches (rarely ever had them unless sinus issues)
    Memory loss – short term, Trouble concentrating
    Chest Pain
    Tightness in throat
    Swollen glands
    Low-grade fever
    Temp below normal
    Dizziness
    Ringing in ears, with occasional sound sensitivity (like on sensory overload)
    Anxiety/Panic attacks
    Muscle cramps and twitches
    Feel flushed
    Always feel worn out – fatigued
    When I fall asleep, I don’t tend to sleep through the night
    Irregular Heartbeat on occasion
    Rapid Heart rate from time to time
    Pain, soreness and tightness in ribcage
    Cold hands and feet
    Low back pain
    Joint pain and stiffness
    Upper back and neck pain

    I about died, but am slowly improving thanks to a wife that wouldn’t take NO for an answer and locating a knowledgeable caring doctor!

    • (More of my symptoms that failed to copy)

      Muscle weakness, especially legs with loss of muscle
      Changes in the way I walk, seem off balance a lot
      Unable to relax that causes insomnia
      Sweating – (Night sweats wake up soaked) heavy at times
      Uncontrollable Blood Pressure at times
      Bottom of feet are unusually painful first thing in the morning
      Knee joint (typically left) swells randomly
      Sinus issues – almost non-stop
      Noticed an increase in floaters in both eyes
      Very easy to agitate, low tolerance for stress
      General “Malaise”
      Symptoms change, as I don’t have all the above at once and they vary in intensity

  20. I first got sick at the end of April 2009. I was having constant headaches, dizzy spells and blacking out which led to me falling and not being aware of how I ended up on the ground. It soon progressed into muscle/joint pain, fatigue, numbness, vertigo, chest pains, palpitations, and many other symptoms. I had to miss a lot of school and walk with a cane as the disease progressed into my grade 8 school year. I was forced to wear a heart monitor and use a cane to walk and be mobile. I was lucky to get into see a doctor in Toronto, Canada who treated me with oral antibiotics even though I tested negative. After 8 months of antibiotics we thought that I was in the clear. I was horribly mistaken. It turns out that I was ignoring small symptoms for about 2 years. In 2011 I began to get migraines again and realized that my worst nightmare was coming true, I was sick. With the stress of high school, being in grade 10 at the time and having a grandfather sick with cancer the stress overloaded my body. As my grandfather’s cancer continued to worsen the lyme disease would do the same. I started to have pain going through my muscles and joints. After christmas break I had returned back to school on January 10 not realizing that, that would be my last day of school for awhile or my last day being able to walk. January 11 I woke up to get ready for school and could barely move let alone walk. I now was wheelchair bound. From January- March I had lost almost all function to my body and my body had been shutting down. I could not tolerate light or sound, move my body, bend my fingers, could not have a conversation do to lack of brain function. Luckily a Natural Path in British Columbia and St. Catherine’s had referred me to see Dr. Patel in Buffalo New york when their treatments were not enough for me. Dr. Patel had told me that if I had not gone to see her I was have had 3 months tops to live as I was progressing drastically as many people do not. She had me doing antibiotic, supplement and glutethion Iv’s, blood therapy, using a sauna, hyperbaric chamber, supplements, oral antibiotics, 4-day rotation diet, gluten/dairy/acid/sugar free diet and oxygen therapy. My doctor had me out of my wheelchair and starting to walk within 4 days of treatment. She still to this day does not know how she did it and says that I am a miracle. I have been seeing Dr. Patel for almost 2 years and have now been in remission for almost 6 months. Because of her I am now a healthier 17 year old female in my grade 12 year of high school. She saved my life and I could not be more thankful.

  21. Lyme has touched three in my family and two in my extended family. I was treated 2 years. My son has had it twice, but both were caught quickly and he was treated, though once the three week treatment relapsed in a couple months with advanced symptoms and he had to be treated for 18 months. My daughter has been struggling for over 7 years. This has affected her ability to complete her education and she is still fighting. She has an amazing story and would be a great one to interview. She went to expert after expert and did everything they said to do (before diagnosed) and at the end they would scratch their heads and say, “I don’t know….” Many believe there are no ticks that carry Lyme in the Midwest, untrue. Many believe that it may be treated for 3 wks and that is all that is needed, untrue. Most do not understand the very complicated co-infections that the ticks carry that is often far more difficult to treat than Lyme itself. Many do not understand the devastation that comes from chronic Lyme, financially, emotionally, relationally, … etc. People in the chronic stage need a team of caring people in their lives to support and stand with them through the thick and thin.

  22. anyone know why the link was removed? I had gotten word of the call the morning it was put out there, but was too tired to post mine, and figured they wouldn’t take the link down that soon. but, musta been taken down 10 or so minutes before I went to post. I just ended up posting it on their Facebook, hoping they are still actively seeking stories.. and, most importantly, still plan to run the show.

  23. Katie, As a respected Journalist I feel you will maybe be the one to give Lyme the attention it needs! Life with Lyme Disease is anything but fun, don’t get me wrong there are some good days and the trick is to have a positive outlook and a sense of humor! I tested positive for Lyme and other co-infections and was registered with the CDC 3 or 4 yrs ago, I loose track of time. There are so many signs and symptoms and it is called the great mimic of many other Diseases which is why many a time it is found to late leaving people with life altering problems not to mention the amount of money out of pocket due to the fact that CDC guideline treatment is 30 days Doxy and you are cured. If that is true why are we registered and why are so many of us struggling each day? Please give this show the justice it deserves, so that all who live with this have hope for a future. I was in the medical field close to 10 yrs now study Lyme, alternative Health, Yoga and anything to keep moving toward a healthier tomorrow. Thanks Melissa

  24. Here is an important topic to cover about Lyme Disease. Insurance Companies are able to manipulate the entire health care system for people suffering with Lyme. I have a plan with a very high deductible, and if I use the network provider for the treatment it would cost me $770 PER WEEK. I found a provider (ARC Infusion) who would supply the treatment (IV medication) for $560 PER MONTH. During the second month, they called me up and told me that the insurance companies they contracted with told them that they now needed to charge their cash-pay customers $2,000 per month for the same treatment. We were basically out of luck. How is this not considered price fixing? Luckily there is a wonderful company called Infuserv that is still providing the IV medication for the low price of $799 per month for cash-pay customers. This is still way too much money for most people to afford, especially when you have health insurance (at this point I don’t know why exactly). Thank you for shedding light on this topic.

  25. I can reiterate the majority of the comments made your website. Started feeling bad in 2004; and was misdiagnosed until 2007, after making numerous rounds to various doctors, and receiving no real diagnoses, even hearing “it must be all in your head”, or you’re a hypochondriac. Just be chance while googling for a chronic fatigue specialist in Houston, TX, found a local doctor specializing in CFS, and during my initial appt., she said we need to test you for lyme disease; results were positive; and that’s where my journed truly began. I thought YES, I finally have a “diagnosis” and now I can get to work on getting over it……………………….wrong! After numerous rounds of oral Rx and two rounds of IV Rx., numerous herbal treatments………………….I continue to suffer…………..although I can work (most days); which I struggle to do, just to keep my medical insurance, there are days that I’m not able to get out of bed and make it to work………………I can basically say I haven’t had one day of feeling good since 2004. While I’m one of the lucky ones (in that I can still work); I’ve lost relationships; friendships, activities that I once loved; missed lots of family events; and at times have felt like giving up; there are fellow “lymies” out there much worse; they can’t work; have lost their income/insurance/homes/families/relationships………….I would like to see a foundation set up for those people. Please consider asking Yolanda Foster (Real Housewives of Beverly Hills) who is a fellow chronic lyme suffer to be on your show; she would be a great representative of this disease………..if she can’t improve with all the resources and money she has……what chance do the rest of us have? Please consider asking lyme literate doctors (LLMD’s) to speak; please do not ask infectious disease doctors…….they are not friends of the lyme community. Also needs to be addressed: under-reporting of CDC’s statistics and their “protocol” of treatment, as well as “Big Pharma” insurance companies, and their guidelines, as well as their pressure to put those doctors who actually do try to treat us, out of practice.

  26. This is so true to all people who suffer from Lyme disease. And because we look normal it is hard for a person to understand. Some days I can’t walk and it is extremely painful but I hold my head up and I continue fighting. I sit at my children’s soccer games and cheer for my kids without letting them know that at any moment I can pass out from the sun, that my legs are so swollen and in pain I want to cry, that the next day I will be in bed sick with a fever for just sitting out for one hour. I do that because I don’t want them to know how I suffer. I see people laugh at me when I stutter or slur my words, they think I am naive. They don’t understand and frankly I don’t want to waste my breath. I graduated college as a honor student but I honestly feel like an idiot at times when I can’t remember to spell simple words or when my kids need help with there elementary homework. I struggle to remember things at one point I couldn’t remember any of my kids names no matter how hard I tried to remember. Doctors literally laugh in your face when you tell then what’s going on with you forcing pills upon you. Your own spouse can not understand even though they are trying really hard. You feel like an outcast. The only people who truly understand are those suffering. But we’re not worried about what people think we are only trying to get the attention of doctors. Be educated in this matter so there are less stories like these and more success stories that we so rarely hear. Treat it early so nobody I mean nobody has to deal with this! My doctor tests any patients for Lyme disease if they complain of sudden migraines, if they have rheumatoid arthritis symptoms, or showing signs of Alzheimer’s. Better safe than sorry he says. Not all of us may remember being bitten by a tick, I know I forgot while i was suffering for 10 years. So don’t just test when they said they were bit by a tick but for other sudden symptoms.

  27. My daughter has been fighting Lyme Disease for over 10 years. It has cost her so much but she is a fighter. Her primary care physician thought it was all in her head and that she should consider an antidepressant. She’d say to me “I’m not crazy I don’t feel right…my body is screaming inside”. She became a certified yoga teacher to try to get in touch with her body to see what was UP? She has traveled from Boston to New Hampshire to Colorado to Seattle to find answers. She’s worked with all kinds of healers both Western & Eastern philosophies. She has taken antibiotics, herbs, acupuncture, bought a Kangen water system , an infrared sauna, a BEAMER mat, & drank concoctions I couldn’t even stomach smelling to try to fight this disease. At 30 she is “finally” feeling somewhat better. Luckily, she works as my partner in Real Estate “The Hamel Team” so I was able to cover when the disease had her in either a detox or flare up.
    The summer I thought would be a dream summer working on Martha’s Vineyard in Carly Simon’s store, Midnight Farm, was actually the summer she got infected with Lyme Disease. It took us 5+ years to get a definitive diagnosis. If Western medicine has simply suggested the Western Blot Blood test we could have started her on the fight to recover much sooner. We got this information from a high school biology teacher, Ruth Trimarchi, who was also fighting the disease. I consider this disease is the plague of our time.
    Nancy Hamel – Amherst, MA

  28. This summer I was diagnosed with Lyme disease after many years of doctor visits. Many people including doctors are unaware of this disease or do not take it very seriously. Lyme disease affects each person differently and is very difficult to detect and treat. It destroys your immune system and can cause fibromyalgia, chronic fatigue, and autoimmune diseases which can cause Cancer.
    In my case, Lyme has caused other issues including endometriosis, infertility and lead toxicity. I am very lucky to have found Envita in Scottsdale, AZ who specializes in Lyme disease and Cancer. Lyme CANNOT be cured with antibiotics alone. The immune system has to be repaired and in many cases other viruses, bacteria or toxicity is destroying the immune system.
    I have just started my second week of treatments and started a Facebook page to share my journey through recovery and very interesting facts about Lyme, Cancer and to spread the word about misleading western medicine. https://www.facebook.com/TheWishingWellness
    I encourage you to educate yourself- it may be a friend, family member or yourself who will need to know. Don’t wait until you have no other choice to make a change- prepare for the unexpected.

  29. The CDC and National Institutes of Health are in collusion with various patent holders of Lyme related bacteria and experimental vaccines like LYMErix. See Kathleen Dickson’s site for more information. (And no, she’s not a nut job)
    Crimes in which people are intentionally exposed to a life-threatening situation are commonly charged as premeditated or intentional manslaughter. Isn’t that what the CDC is engaged in? Let’s not forget to mention that major insurance companies – as well as Federal programs under Medicare, are also in collusion with the CDC/NIH/AMA denials of pertinent medical facts.
    The Lyme epidemic has “Made in America” written all over it, and getting the address straight would cost hundreds of billions of dollars in “lost” profit potentials and lawsuits. So let’s allow people to die off from neglect and obfuscation of facts, and pander for more research money.

  30. Only 2 more days for the show that the Lyme community has been buzzing about since it was announced! Way too late for my comments to make a difference. My story (ALL of our stories) have the same common threads – unbelieving, uncaring doctors, misdiagnosis or none at all, suggestions that we are all hypochondriacs needing psychiatric help, and YEARS worth of living(? term used loosely) with daily pain, severe anxiety – about everything under the sun, including our uncertain futures, and loss of love and friendships due to the stress of maintaining a relationship with someone with a chronic illness. You know loss and sadness firsthand – for which I am sorry and my heart truly does hurt for you. The fact that us Lymies (specifically chronic or post traumatic Lyme Disease syndrome as some are now calling it) have to fight to be even recognized as being sick in the 1st place is very sad, depressing and only makes us sicker! The Lyme sites are exploding about your show and for what it’s worth I just want to say thank you to you and your staff for listening to your loyal viewers and shedding some light on our everyday battles. People have actually said to me and with your very own sad and unfair experience with ‘your’ Jay, you might actually agree with these sentiments – but people have said “well, at least it’s not cancer…” This is true. The big “C” strikes fear in everyone and rightfully so. But Lyme is a frightful entity completely unto itself. Our Lyme specialists (LLMDs) are not easy to find. They are forced to hide in the shadows for fear of treating patients without the proper CDC and IDSA guidelines and losing their licenses. Although this is by no means a new disease, the protocol for treating it (one month of ABX and then you’re on your own) has not EVER changed, despite patients NOT getting well under this ridiculous “gold star’ standard for treatment. I’m sure your research has shown that. Without sounding paranoid and a conspiracy theorist, the current media attention that Lyme has gotten recently has nothing to do with helping us get well, and Everything to do with the timing of re-releasing a new Lyme vaccine – aimed at not getting the disease in the first place – NOT healing those already suffering from it chronically. I am personally insulted by the so called new numbers released, stating that the number of new cases each year has been unreported 10 fold. Those new numbers (300,000 per year of new cases of Lyme) themselves are grossly low. The current diagnostic testing standards are NOT accurate for one. (as a side not, the CDC admitted this in a private memo obtained by the Freedom of Information Act when trying to find participants NOT already infected with the disease for their vaccine trials – meaning, if they are already infected, the results for testing the vaccine would not prove in their favor that the vaccine is effective – i.e. a huge money pit!) Since Lyme is still not publicly recognized, many people do not even get tested – which would increase those numbers greatly . These are the poor souls that are sick for years, never connecting the dots, that end up having Chronic Lyme. Which I can’t stress more, does NOT EVEN exist according to the CDC and IDSA. We have a nation full of sick people – I call it the Lyme apocalypse. As silly as it may sound – the zombie shows are so popular – since Lyme affects your brain, a lot of us do feel like we walk around like zombies – no affect, loss of speech and being able to articulate, basically dead-eyed due to our depression and lack of energy. It isn’t just the joint pain, headaches, etc… This disease is multi-systemic. No part of your body is immune from these spyrochettes. And people are dying from it every day. It is no different from the phrase that is used regarding AIDS patients – death due to complications arising from the AIDS virus. Only you will never hear that in the media, because (broken record here again!) Chronic Lyme is a disease that is rejected for even existing. Apparently there is money to made from a vaccine preventing Lyme, but money to be lost by treating those long term who have the disease. Cash is King. Sick people are a drain on society. I am lucky – despite living with chronic pain and a plethora of other symptoms daily, I am walking. I am gardening. I (am trying my best to) take care of my family and household. As far as I know right now, my heart and other organs are functioning properly. I do suffer from ‘brain fog’ and am very forgetful though. I have begun to stutter because I get so frustrated at not remembering simple words. My vision has been affected. If I do too much one day, I am bedridden for at least the next day if not longer. I have a new normal. And I have to know my not only physical, but mental limitations. I get overwhelmed way too easily and stress and obsess over just about everything. This is not the me as I was before getting sick. I hate myself for having unproductive days. I don’t enjoy laying in bed, but some days the effort of walking from the bed to the bathroom seems an insurmountable task. Taking a shower (but I assure you I do it anyway!) becomes a huge project itself just lifting my arms above my head to wash my hair. I cry – a lot. I hibernate from the world on these days not wanting people, (friends and family included) to see me that way. The Lyme support websites have been tremendously helpful to me. Just knowing that I am not alone nor am I crazy. AND shows like yours give hope that awareness CAN change things. I do find it disturbing and sad though that it takes celebrities, I will mention Yolanda Foster, Tommy Motolla’s wife, Darryl Hall, Brooke Landau off the top of my head, to make people CARE. There are millions – yes millions of us suffering daily and screaming to be heard by our medical professionals to no avail. It is what it is. And I will continue to be thankful that at least these people speak out and use their celebrity status for good purposes and God Bless them for that. The money they raise will hopefully go towards research for finding a cure. Wow – for not having much to add, I certainly used a whole lot of words! I’m sorry for the length of this comment. I’m thankful for the forum to voice my opinion. So you know who you are hearing from – I am a 49 year old woman who most days does not look sick at all – a double edged sword. I have always been a “stay at home” mom who now has a beautiful daughter in college. I have been looking forward to working when Lauren left for college for years now. Unfortunately the day to day uncertainty of Lyme and how symptomatic I will be, has prevented me from even looking for a job. I have the luxury(?) of not needing the extra money to live on, but this is not how I planned or wanted to spend my empty nester days. My days can get very long. I do believe that my long term ABX treatment, along with using a rife machine, microcurrent, other meds, herbals and supplements, acupuncture, etc… has allowed me to function at this level. It is my belief that without my treatment I would be nowhere near this functioning level. However the only one who knows for sure what condition I would be in without my protocol, is God himself (or herself – lol). Katie – a most sincere Thank You for your show on Lyme disease. I will be glued to the TV set on Wednesday, as will all the other Lymies! I hope it gets incredible ratings for you and that it will warrant a follow-up. I would be thrilled to appear on a future show and speak on behalf on all of us who feel we simply aren’t heard. Much luck and success with the show: Hugs:) Annette Polson

  31. Hi everyone. Here is my Lyme disease story. I was first diagnosed with strep throat four years ago. The antibiotics I took depleted the good bacteria in my GI system, resulting in what’s called C-Difficile. I was never the same after that. I was experiencing extreme fatigue, memory loss, brain fog, lack of focus and concentration, disorientation, shallow breathing, weakness, GI pain, neck pain, neck creaks, jaw pain, slow healing from surgery, sore throat and cough, insomnia, hair loss, mood swings, irritability, and increased allergies and sensitivities.

    I went to my family doctor on numerous occasions to try and resolve why I was experiencing all these symptoms. She gave me numerous tests including x-rays, ultrasounds and copious blood tests and sent me to specialists to test for things such as Crohn’s disease, Celiac, MS, Chronic Fatigue, fibromyalgia, which all came back negative. She then wanted to prescribe anti-depressants so that I could “live” through the symptoms of the Chronic Fatigue.

    I said that I didn’t want to live like this, having virtually no quality of life. I wanted my old life back with energy and vitality! At this point, I was only able to go to and from work and then I would collapse in bed at night to conserve energy for the next day.

    Then, I was referred to Envita. I had tests done and was diagnosed with Lyme disease and heavy metal toxicity. Upon treatment, I immediately saw results, but it’s taken a year to rebuild my strength and feel like myself again. I’m slowly regaining my former active life; including dancing and most of the symptoms from Lyme have completely disappeared. I was lucky.

Post your comment

Please limit responses to 150 words. (And please, no vulgar language, no personal attacks, no spam.) Comments are moderated, so there may be a delay before they appear on website.

Your email address will not be published. Required fields are marked *

*


*

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

7898