Tell CNN Your Lyme Story Today

lyme disease

Lyme Action for Today:

Let’s all Message CNN today and tell them either: your Lyme story, about a friend of family member you lost to Lyme disease or about how insurance refused your Lyme treatment. Let CNN hear our voices from around the world. Let’s make a global effort.


We have tried protests… too many of us are just too sick to go.. but nowadays soooooo much is done through social media, so let’s start an online action today.

Once you do one of these things comment below on what you did so we can all go like it or retweet it or comment after your action.

30 thoughts on “Tell CNN Your Lyme Story Today”

  1. My life I was infected with HERPES in 2016, i went to several hospitals for cure but there was no solution, so I was thinking how can I get a solution so that i can live a normal life again. One day I was in the trabaco side thinking on how i can find the cure because the pain was to much i always feel embarrass i was sitting alone lamenting in tears a lady walked to me her name is kutrila asking me why i am crying, i open up to her telling her my problem,that i have herpes genital and i also narrate how it started to her. she told me not to worry that she can help me out, she introduce me to a Dr .Ojie who uses herbal medication to cure HERPES. so i exchange my contact with kutrila when i got home i receive a call from her that she has contacted Dr Ojie on my behalf and she also send Dr.Ojie contact, so i mail Dr.Ojie and explain to him about my illness. He told me that he can cure my herpes within 8 days and he told me all the things I need to do.after 3 days he send the herbal medicine to me and also give me instructions how to take the medication which I did and i followed his instruction properly. Before I knew what is happening after one week i cured from herpes totally and all the blister and itching was gone. i decide to share this story because i believe a lot of people are passing through the same stress and they have it in mind that there’s no cure for herpes.i am telling each and everyone who’s reading my testimony that there’s cure for herpes. if you have the faith try and use Dr.Ojie herbal medicine, i promise you after 8 days you will also share a marvelous testimony like me.if you are you are having herpes or any kind of disease kindly mail Dr.Ojie via email>< and you also call him or message on via whatsApp at +2348032460627ame Williams Mercy I am here to give my testimony about Dr.Ojie who helped me in

  2. Greetings to you all, i am here today on this forum giving a life testimony on how Dr.Aluya has cured me from HERPES VIRUS, i have been stocked in bondage with this virus for almost 2 years now, i have tried different means to get this sickness out of my body i also heard there was no cure to the virus, all the possible ways i tried did not work out for me, i do have the faith that i was going to be cured one day, as i was a strong believer in God and also in miracles, One day as i was on the internet i came across some amazing testimonies concerning how Dr Aluya has cured different people from various sickness with his Herbal Herbs Medicine, they all advised we contact Dr Aluya for any problem, with that i had the courage and i contacted Dr.Aluya i told him about my Sickness, He told me not to worry that he was going to prepare some Herbal Medicine for me, after some time in communication with Dr.Aluya, he finally prepared for me some herbs which he sent to me and he also gave me prescriptions on how to take the herbal medicine , My good friends after taking Dr.Aluya Herbs for some weeks i started to experience changes in me and from there, I noticed my HERPES VIRUS was no longer in my body, as i have also gone for test, Today i am fit and healthy to live life again, I am so happy for the good work of Dr.Aluya in my life, Friends if you are having any time of disease problem kindly email Dr.Aluya on {} or call him on +2347064851317} you can also visit him on his website for help God Bless you Sir…….

  3. I Have Been Suffering From (HERPES SIMPLEX VIRUS) Disease For The Past Two Years And Had Constant Pain, Especially In My Knees. During The First Year,I Had Faith In God That I Would Be Healed Someday.This Disease Started Circulating All Over My Body And I Have Been Taking Treatment From My Doctor, Few Weeks Ago I Came On Search On The Internet If I Could Get Any Information Concerning The Prevention Of This Disease, On My Search, I Saw A Testimony Of Someone Who Has Been Healed From (HERPES SIMPLEX VIRUS) By This Man Dr Ehi And She Dropped The Email Address Of This Man And Advise We Should Contact Him For Any Sickness That He Would Be Of Help, So I Wrote To Dr. Ehi Telling Him About My (HERPES Virus), He Told Me Not To Worry That I Was Going To Be Cured!! Hmm I Never Believed It,, Well After All The Procedures And Remedy Given To Me By This Man Few Weeks Later I Started Experiencing Changes All Over Me As The Dr Assured Me That I Will Be Cured,After Some Time I Went To My Doctor To Confirmed If I Have Be Finally Healed Behold It Was Gone , So Friends My Advise Is If You Have Such Sickness Or Any Other At All,You Can Contact Him On His Email Ehiherbalhelp@Gmail.Com Or Contact Him Through His Whatsapp Mobile +2348143502763

  4. Hi Friends i am so glad to writing this article today to tell the world how Dr BAWADA cured my HSV VIRUS,i have been detected with HSV-1 AND HSV-2 since five years ago, ever since then my life has been in complete bizarre and agony,i have used so many drugs that was prescribed to me by several doctors,but it didn’t cure my HSV VIRUS neither did it reduce the pain,until a certain i was checking for solution in the internet,then miraculously came across Dr BAWADA the powerful herbalist that cure numerous individuals HSV-1 AND HSV-2 INFECTION,then i contacted his i explained everything to him and prepared a cure that cure my HSV-1 AND HSV-2 disease totally after receiving his herbal medicine, so my friends viewers why wait and be suffer when there is someone like Dr BAWADA that can cure any disease HIV/ CANCER/ HEPATITIS B VIRUS, you can contact his or his Mobile number:+254741086480 OR web/site

  5. Dr MABUWA is a great healer that can heal your disease. i was cured from HSV 1 and HSV 2 VIRUS after i contacted from my boyfriend after he cheated and since 2years ago i had been living a life full of fear. but when i surfed on the internet one morning and i saw comment on Dr MABUWA curing deadly disease. HERPES.HIV.DIABETES.HPV.HBV. CANCER and many more. i was skeptical that he might not be real then i decided to give a try to him. and as i did i never regretted contacting the great Dr MABUWA. he told me the ways and how to get my herbal medicine i believe and worked with him and he sent me my herbal medicine and as i received it he gave me instruction on how i will take it and i also gave my boyfriend to also drink because i really love him. despite he cheated on me. and behold Dr MABUWA said after 2weeks of usage we should go for test and as we did. our result both came out negative. Many lives has been saves because of you sir. may you ever reign and may God bless you more. you can reach him on his or his What app Mobil:+2348130714541 or visit his Webs:

  6. I’ve been sick with Lymes for 5 years now.i Did all the treatment. spent lots of money on it. I almost gave up. It’s too hard to write all of the problems that I’ve had. All I felt like was I’m slowly going to die. not until i came acrose a post of a friend on Facebook on how a herbal Dr called AZIBA cured her from LYMES disease, so i contacted the same dr for help and he responeded and prepare a vegetarian herbal remedy which i use for 5days and behold i was cured and free from the disease,i really appreciate his work and i also wish you contact him for help. via Email: or website:

  7. I am very happy today to share this amazing testimony on how Dr Akpan the herbal doctor that was able to cure me from my Herpes Virus with his herbal medicine. I have been a Herpes patient for almost 8 months now and have tried different methods of treatment to ensure that I am cured of this terrible disease, but none worked for me, so I had to leave everything to God to handle as I was a Christian who had faith that one day God would intervene in my life, yet I felt so sad and desperate as I was losing almost everything due to my illness, A few months ago while I was searching the internet I saw different recommendation about Dr Akpan on how he have been using his herbal Medicine to treat and cure people, these people advice we contact Dr Akpan for any problem that would help immediately, I contacted Dr Akpan and I told him how I got his contact and also about my disease, after some time Dr Akpan told me to have faith that he would prepare for me a medication of herbal herbs, he told me I would take this medicine for a few weeks and also asked my home for home address so as possible for him to submit the medicine for me, so my good friends after all the process and everything Dr Akpan actually sent me the medicine, I took it as I was directed by Dr Akpan, after a few weeks passed, while on Dr Akpan medication I began to experience changes in my body, I had to call my doctor at the hospital for some blood test after test my hospital doctor told me that I was no longer with the Herpes virus and my blood is pretty good, I can not even believe this, Friends well today i am Herpes Free and i want everyone to know that there is a cure for Herpes for those who will contact Dr Akpan after reading my testimony, you can kindly contact Dr Akpan on his email AKPANHERBALHELP@GMAIL.COM or call or whatsApp him on Mobile: +2348143502763, God bless you all …

  8. I am currently 51 years of age and can think back over the course of my life as always struggling on some level with my health.

    My earliest memories of my childhood include having ticks of varying sizes and colors pulled out of my scalp, groin area, underarms, behind the knees and at the waist. All spring, summer and fall, my neighborhood friends and I would walk the woods, dig in the dirt and explore the various parts of our neighborhood on Long Island, New York.

    I developed asthma at age three and severe allergies to trees, grasses, pollen, foods and animals. At the age of 7, I developed a very swollen lymph gland in my groin. My mom took me to the doctor who examined me and said simply, “She has a viral infection” and sent us home. No tests, no treatments, no biopsy. Of course, that was in 1970, so Lyme disease was not exactly foremost in any doctor’s mind.

    Around age 12 my left knee began giving me trouble. It would often get stuck into a bent position and make loud pops. I saw the doctor who said it was likely a genetic problem, as my father had “bad knees.”

    At age 15 I developed some fairly severe obsessive behaviors that no one could figure out. Doctor after doctor could not help me. At 24, I sought help from a psychiatrist, thinking surely I must be out of my mind. Unable to find any answers there, I have struggled with this my entire adult life.

    In my thirties, I began suffering from migratory aches and pains all over my body, but predominantly in my joints, in particular the knee joints. I was tired, depressed and had muscle pains and cramps. I saw my doctor countless times and was tested for everything she could think of: hormonal imbalance, hypothyroidism, cancer, AIDS, sojgrens, epstein barre, you name it. Finally, at her wit’s end, my doctor diagnosed me with fibromyalgia. I was skeptical, but went with it. I was prescribed a variety of drugs to help with pain, which didn’t work so I stopped. My pain threshold continuously broadened.

    In my early forties, my knee pain was getting worse so I saw an orthopedic surgeon who conducted and exam and ordered an MRI, which showed significant damage in my left knee joint. There were tears in the meniscus and a bakers cyst, inflammation and wearing of the cartilage in the joint. My doctor was alarmed because of the severity of the damage and I did not have any history of sport injury or accidents that would cause this. He chalked it up to genetics.

    Fast-forward to May 2010 and I finally convinced my regular doctor to test me for Lyme. I got back a positive result and was treated with doxycycline for three weeks. I knew from my own search that this was a limited protocol and that I should get at least six weeks worth (I still had no idea LD was chronic). My brother had Lyme years earlier and was immediately put onto an IV. My doctor said no. I felt better after about two weeks but once the antibiotic was finished, all the symptoms came back.

    In the meantime, my orthopedic doctor prescribed me Celebrex to help with the inflammation and pain in my knee, masking my pain and the seriousness of this debilitating disease.

    In January 2012, at the age of 48, I underwent a TOTAL knee replacement (TKR) of my left knee. Every intern, nurse, and staff doctor at the hospital was shocked that my joint was bone on bone at such a young age. I too was pretty appalled but the promise of being able to walk without a cane and be active with my family once again was too good an opportunity to delay.

    Within weeks of the TKR, I began experiencing the worsening symptoms that I had experienced before I tested positive for Lyme two years earlier. My doctor said it was likely nerve damage and/or healing tissue from the TKR. I gave it time. Months later, the pain was overwhelming. The muscle cramping in my calves and backs of my thighs would wake me at night, i would be reduced to sobs from the intensity. My bones felt like there was molten lava running through the marrow. I demanded more Lyme tests and complete blood panels, had my hormones checked, saw the orthopedic again to have the knee checked again. I saw a neurologist who performed two EMGs, two nerve conduction tests, and five MRIs, two with contrast. I had to fight my insurance every step of the way to get these tests approved and they were time consuming and painful. I lost multiple days from work between doctor visits and agonizing pain. My worst symptoms at that time was bone and joint pain, muscle cramping, weakness in my limbs, exhaustion, and memory lapse, inability to concentrate or focus, bloating, digestive problems, and anger. In total I saw six different doctors.

    In the meantime, I researched nonstop. I found support groups and met others like me. What I learned is that chronic Lyme disease is a dirty word. The CDC and the IDSA don’t want to acknowledge that it exists and so they diagnose things like fibromyalgia, ALS, MS, and chronic fatigue syndrome and simply treat symptoms instead of addressing the underlying cause.

    Finally, at the age of 50, I found a doctor who listened and used his clinical skills to diagnose me. After a few months of treatment, my tests began to show evidence of infections. I was officially diagnosed with Bartonella, Babesia, Mycoplasma, and Lyme. These are all vector borne illnesses and are often described as coinfections of Lyme. Later I would be diagnosed with additional coinfections of Lyme: brucellosis, parvovirus, and toxoplasmosis.

    We have since discovered that my 25-year-old daughter has the same coinfections and Lyme as I do. Our doctor, a Lyme specialist, has determined that I’ve likely had these infections since early childhood and that my daughter likely contracted them from me in utero. When my daughter was born she had an extra thumb, which was removed at 18 months. Immediately following the surgery, she developed facial tics and trunk tics. By 5th grade, age 9, she developed OCD and ADD, continued tics and slight depression. She was eventually diagnosed with a mood disorder.

    In light of our recent findings concerning Lyme, et al, the research I’ve done shows that the above symptoms and misdiagnoses are common in infants and children with Lyme and coinfections. My daughter has always had digestive issues. She has had multiple MRIs and CT scans of her abdomen. She has had an endoscopy and stool samples taken, multiple blood screens, hormone checks, thyroid tests. She’s had unexplained joint swelling and numbness and pain, which led us to pediatric rheumatologists. She developed severe allergic reactions to fruit at age 17—fruits she’d eaten all her life without any issues suddenly sent her to the ER because her throat closed up. Every single test came back normal or negative. That is, until she finally tested positive for Lyme and coinfections. She has since begun treatment and her digestive issues are actually improving.

    No one could ever convince me that all of our health issues are not linked to having chronic Lyme.
    It is time to give this disease the attention it deserves. It is an epidemic and it’s getting worse. There are a multitude of coinfections showing up all over the country. Lyme is everywhere. Babesia, bartonella, mycoplasma, anaplasmosis—they are everywhere.

    We need accurate testing, advanced screening, better treatments, and insurance coverage for treatments. Just like AIDS in the early ‘80s, Lyme is being ignored or categorized as a disease that only affects certain people in certain areas. This is simply not true.

    1. Thank you for your story. Bless you for fighting and believing your intuition. I hope you are doing well at this time. I and my 4 children have had Lyme it is not an easy road to travel. Best to you and your family.

  9. I was a mom of 6, happily working 4 days a week when I fell ill in late summer of 2000. My husband and I, and the youngest 5 kids, ages 1 to 18, moved into a rental home at the edge of a country subdivision. It was quiet with a nice sized yard, adjacent to a farm field. I spent days pulling underbrush from beneath bushes and raking crusty remnant leaves from the season before. Our little daughter’s kiddie pool invited deer to drink. Cranes flew low on their way to a nearby lake and ground squirrels or rabbits scurried between the brush that marked the yard perimeter.
    I remember being at work on a surgery day, a week or so after my yard cleanup days, and being embarrassed because my short white socks couldn’t completely cover the rash on my ankle I’d noticed a couple of nights previous. I’d found a “bug” attached and furiously scratched it loose. (I grew up on a farm, one of 9 kids who roamed nature and hunted and fished a lot, so a little bug was not bothersome to me at all.) An egg sized oval rash completley covering my entire ankle bone didn’t worry me either. I’d been bitten by countless bugs and flies and bees in my life.

    I remember one work trip to a sister company in Minneapolis where I’d had a hard but prosperous work day with a full surgery schedule. At the airport awaiting my flight, I became very disoriented and had low back of the head headaches and difficulty walking. I felt like a bus had hit me and asked for help from an attendant. I made it home and went RIGHT to the ER. They had no clue what was going on and said it must be “viral”

    I can’t recall the time passage before I started suffering with terrible head aches, dizziness, joint pain and weakness. My ears were ringing and I actually noticed some hearing loss. At this point it was affecting my job as my employer yelled at me for missing a verbal directive.
    I went right to the clinic nearby and was told it was probably viral. Within another week or two I noticed glandular swelling, low grade fevers and a thickening in my neck that caused swallowing difficulty.

    I was tested for thyroid disorders but my labs were normal. In spite of this, the thickening prompted a surgical removal of half my thyroid and a very dense superball sized nodule, along with another peasized one.
    I was told this should relieve my symptoms.? ?
    About a month after surgery I went to south Texas (and into Mexico for a day) with family.
    Two months later our entire family got a bad flu, my husband on a business trip so being sick with 5 kids also sick had me hopping.
    As the kids got better in a 2 day period, I did not. I could barely walk and had an excruciating headache, felt like someone had driven a hot poker through my right eye, dizzy spells, sweats and shakes with fever. I visited the ER a couple times and my family doc to follow up. They thought perhaps I’d picked up a weird bug bite while on vacation. Or perhaps had mono.?
    I couldn’t unlock my clenched hands, my memory and thought process became so dim. I tried to go back to work after 5 solid days of this and promptly collapsed.
    Hospitalized, I had two people in hazmat suits come in from Infectious Disease. I was terrified I has some rare disease from Mexico.
    They finally told me my symptoms sounded a LOT like Lyme but they said I lived in a city suburb; that March was not Lyme season and I didn’t fit the “profile” ; as they studied some CDC site for info. When I told them I really lived in the country with deer drinking from the kiddie pool previously and visited our yard regularly; …that just because I was a woman did not mean I didn’t love outdoor hobbies, and tried to remind them that I’d been SICK and doctoring for MONTHS.
    My test showed a “borderline” antibody level for Lyme and they sent me home with medication for my diagnosed Lyme, saying I’d be all good in a week to 10 days.
    I got a call 2 days later that my second part of the Lyme test was “negative” and to discontinue my antibiotics.
    I was told I probably had post viral syndrome and it may take 6 months to improve.

    We couldn’t afford to pay child care while I healed or hire anyone to help me at home so I lierally crawled around the floors to care for my now 1.5 year old and 4 year old at home. I’d have to steady a laundry bin across my lap and shimmy down the stairs to do laundry, then crawl back up. I’d have to sit in a chair in the middle of our back yard to play ball with my little son.
    After 6 months I was told I had Chronic Fatigue Syndrome. Later on they added Fibromyalgia. I was told I might recover in another year or so.
    I was not allowed long term disability and waited about 2 years to file for disability. I cried harder than I’d ever cried the day I started that paperwork. I had, years previously had to seek a divorce and went back to school as a single mom of my oldest 3. I had worked SO hard and loved my job and was proud of that.
    Many symptoms increased and changed over the next 8 years. Migrating arthritis came and went. Weird rashes. Heart irregularities made me weak. Spotty vision, with thread-like and bubble floaters constantly has me trying to blink my vision clear.
    I became a terrible insomniac, couldn’t read a single paragraph without forgetting what I’d read in a mere minute. My vocabulary went out the window. I couldn’t keep my body temp regulated. My lower back, long ago injured in a bad auto accident had suddenly become SO pained again.
    My face would go numb, I had weird little involuntary movements under my skin, especially in the legs and arms.
    One night I’d driven to pick up my daughter at Church and I “froze” in the parking lot, not remembering how to park the car and was so disoriented and weak I somehow walked in and collapsed. I pretty much quit driving after that. It was terrifying and the lost freedom became my saddest loss.
    After that I called and begged even MORE to ask my hmo to let me go out of network to another clinic, possibly Mayo. I was shot down.
    After 8 years of pushing and pressing JUST to do my mom and home duties, missing some events because I was too weak to attend, many ambulance trips and a revolving doors of specialists, I went online to talk to a friend who helped get me a doc out of network.
    Lyme had always been on the forefront, mostly because of our University system telling me way back that this was SO suspected and that I’d had high antibodies to the Bb (Lyme) bacteria.
    I had TWO out of network MD’S tell me it was Lyme all along. That I was a classic missed case and couldn’t have been more “poster child”. My antibody tests alone, without proof of that rash should never have eliminated that 2001 diagnosis. 🙁

    The infection had been present in the late summer of 2000 but was not tested until months later. Often by then antibodies, will have died down some. Mine were still registering and my immune system had tried valiantly to protect me, but failed with a crash of a flu.
    I have had passouts. Seizure “LIKE” episodes. Stroke “Like” episodes where in my mind I could talk but my mouth only slurs and stutters.
    I’ve had two bouts of partial paralysis; one with both legs at once and unable to pee without a catheter, and once Left side . At 48 I spent 2 weeks in a nursing home to “remember” how to walk.
    After only a few weeks of seeing a Lyme specialist (out of network and out of pocket) the medication prescribed got me out of the wheelchair.
    I was allowed to work with PT at home but that was only allowed for 6 – 8 sessions, post hospitalization.

    The Lyme paralysis also attacked my digestive system, twice losing 30 lbs in a matter of a couple months and not being able to eat without terrible esphogeal spasms. I was told i had eosinophil esophagitis. My regular docs didn’t want to believe it was Gastroparesis. *Both times I got this coincided with the bodily paralysis.

    In- depth treatment for Lyme was never feasible for me because of lack of funds. My Lyme specialists have tried the best they could to get me well. When my stomach quits working, I cannot take oral medication. For latent Lyme, missed cases or those not responding to typical treatment, some are given the option of IV treatment.( as.oer CDC). I could never afford this. My conventional doctors would not agree this was a missed case of Lyme…for obvious reasons.

    Under one hospitalization ONE doctor, the VERY doctor who told me a few years before that I DIDN’T have Lyme…that he didn’t even believe in CFS or Fibromyalgia and told me I had “my own syndrome”. ..he finally admitted I’d had Lyme.(not documented in my records but witnessed by 2 family members). He also said my outside docs had treated it so I should be healed. And that the rest was “just” damage so go home and just get through it all.

    A few years back I was retested at a lab that specialized in tick disease. My antibody Lyme was still positive. The 2nd portion of the test said I was positive for a “recent” case. (Preposterous in that I hadn’t been outside for TWO Years in any area I’d have been bitten)
    I DID get bitten by a tick the ONE day I was outside in our yard for my son’s grad party in 2015. I called in for medical help and they issued me a prescription, sight unseen. I took the meds for the 3 weeks and felt even more terrible than my “normal” chronically ill self, when I was done. I went into our urgent care on a Friday night and an old doc told me that 15% of people didn’t get better on the prescribed meds so he was going to change it. When I told him my story and my concern that I could have contracted another tick disease along WITH the Lyme (which is common, and I’d previously shown I’d had an Ehrlichia infection in ny past) he said he’d refer me to an Infectious Disease doctor immediately after that weekend.
    After not receiving a call back I called my own GP and they told me they were refusing the ID referral. When I explained what the old doc had said they said ” oh he’s pretty old and doesnt know what he was talking about” …yet he was one of THEIR docs!
    I went into my GP at the 5.5 week post-bite time and SHE found the faint target rash around my ear, where the tick had bit me. She ordered a Lyme test. It was NEGATIVE…even being tested at the exact perfect time of 3 to 6 weeks as the CDC directs. Even WITH a bullseye rash which is completely indicative of Lyme infection.

    I was told that I now had Post Lyme Disease Treatment Syndrome ( a new term the profession had come up with to describe/justify those 10 to 20% of treated Lyme patients that didn’t get well , as per the CDC. ). When I asked HOW can you diagnose me with that syndrome a mere few weeks after a bite, he told me I had Lyme before and my doc out of network treated me and that I had the syndrome from WAY back then.

    My story is long. And scary and doesn’t even BEGIN to cover what has happened in a 16.5 year time span. Missed holidays and special events with family. Missed income. Long ago hobbies like running and hunting that had to be hung up. Walking any further than the mailbox, or even to the kitchen. Eating normally. The loss if friends and social life. The heavy burden on a marriage. The TERRIBLE guilt that plagues me that I can’t be the mom and person I wanted to be and once WAS. And having doctors be not merely uncaring or not helpful but HOSTILE. One doc, a rheumatologist ( the one that is supposed to follow CFS and FM patients like “me” told me to quit reading medical stuff and asked me “JUST WHO is the doctor here?” And told me to never come back because there was nothing he could offer me.

    This IS an epidemic. Just a few years back we saw reporting for Lyme at “merely” about 30K new cases per year. A few years back we saw the CDC jack those numbers up to over 300K new victims per year. Many of which are children.

    My long-winded account of missed diagnosis, of inaccurate testing and of doctors literally HIDING from this disease is not just troublesome, it is evil, intentional ignorance.
    There is something twisted in that doctors and medicine in general are allowing children especially to live a painful and terifying substandard life because they wish to stand with an outdated status quo in diagnosing and treating a (now) much advanced organism with many many strains.
    Like the tell-tale sign of Lyme, the sconce of Medicine is an EVER- moving target and should never remain stagnant.

    I have not lost my life to Lyme …yet. but I’ve surely lost myself. Many lose their lives and the secret cause hides in the lies and unfinished business of medical examiners and who marks cause of death.
    Please. No more Lyme Lies. No more Lyme suicides.

    No more kids leading quiet painful lives without bike rides and baseball, prom dates and graduation tassels. Marriage and family.

    I’m grateful I got to live half a life. I cant even imagine the lost boys and girls. Tossed aside by those revered that promise to Do. No. Harm.

  10. My story is similar to Niki’s

    I started with horrible low back pain, fatigue that I could sleep 8 hours at night and all day long, my left eye started twitching constantly, my muscles all over my body twitched, all my glands swelled up. I forgot things I did daily like at work, I was a bartender and frequently couldn’t multitask any longer and forgot the most basic cocktail recipes. (I was very fast and good at my job for years so this was scary to me)

    Then I completely crashed after 2 years of these symptoms increasing and misdiagnosis over and over. My hair started coming out by the handful daily, I could NOT move off the bed or couch and if I did I was falling and felt like everything was shaking and rolling around me, the fatigue and pain (that was now in every joint of my body and my neck and head) made me just pray to not wake up. My muscles were all so weak and I couldn’t even open a jar which was not normal for me, I was always a very strong person. I could no longer read a book, watch TV or follow a simple conversation. Could barely string a sentence together, write and couldn’t drive. ( I pushed myself and tried to drive until I hit another car finally) No Dr’s had answers. The ER, my regular doc none. Finally after months in bed, not working and barely caring for my kids who thankfully were old enough to do for themselves, I researched all my symptoms on FB and Google. Over 75 symptoms daily now. My life was over, I was sure I would die and wrote my children letters telling them how much I loved them even. I found a whole community of people who were exactly the same as me!! They all had Lyme and Co infections like Babesia and Bartonella etc.

    I found out a reliable test was with Igenex in Ca and ordered one immediately. Asked my Dr to test me and he agreed and 2 weeks later confirmed I was correct! I finally had a answer!! Only thing is I had a severe fungal lung infection a few years earlier and my body could not tolerate antibiotics. I had to find alternatives. I began using the Cowden Protocol 18 months ago along with so,e prescriptions from my Dr. I am only about 40-50% better than I was 18 months ago. I cannot afford a Lyme Literate Dr. Lyme is passed through the Mother to children they say and it makes sense because both my kids show symptoms and I am now broke and scared for them because no Dr or Insurance will recognize the seriousness of Lyme and I also have Babesia, Bartonella. , Mycoplasma pneumonie, Candida and Viruses like EBV.

    I am still very effected Neurologically so it’s hard to even type my story right now and I am leaving a lot out. Please help us to spread awareness and get help and validation! We are dying alone and broke. No family or friends left for many of us.

    Also there was a vaccine called Lymerix years ago. In about 1994 the CDC and ISDA CHANGED the case definition of Lyme to make it look like a simple arthritic knee, easy to treat. This is not true and they KNEW this disease was causing disability and immune suppression. There is a movie on YouTube called LYME CRYME, it shows all the evidence and science that this is the truth. They should be prosecuted. Please take the time to research this. Lyme is a illness of immune suppression not unlike AIDS. We are completely disabled amd many die, children also. Thank you for your time, Michelle D

  11. It started July 2014. I was in Alexandria, LA watching my sons baseball game. When he pitches I have a bad habit of twisting my hair so I thought I made my scalp sore. One week later I had my older son look at it. He told me it looked like a little burn mark with a red ring around it. On week 3 it felt like a pimple except I felt legs. He looked at it and said don’t move it’s a tick. He pulled it out and said that red ring was big and ugly. Being in the south I didn’t think Lyme. 2 days later my hip hurt so bad for no reason I could barely walk. Thank god i live at my parents. On Sept 8th I had a bad migraine. I told my parents I’d be fine so go to bed it was 10pm. I was laying in bed when my left side of my face felt weird. I went into the bathroom to see my entire left side of my face hanging. Needless to say I thought it was a stroke. As I turned to walk out the bathroom I fell over. I had no control of my legs, arms, hands, and couldn’t talk. I scooted on the floor to my parents room using my stomach muscles. Since I had no control of anything I had to bang my head which was already killing me on their door to get their attention. My dad grabbed me. I only knew this because my mom can’t pick me up. I now couldn’t see. They packed a bag and to the ER we went. I stayed the night and everything came back normal. 2 days later I had a 3 hour seizure. I was at the ER but the wait was so long I was normal before they ever called me. The very next day I had another one for 45 minutes. We made an appointment with a neurologist who stated I’m not having true seizures and then said your case is way too complicated you may want to find another doctor. First don’t they take an oath to treat patients. I think he knew I had Lyme and wanted nothing to do with it. So, 2 days later I start with a tremor and making ticking noises with my mouth. By this time I also had swollen lymph nodes in the back of my neck that you could see without touching. My entire neck and back were killing me. It felt like I was run over by a car. Once again I started having a seizure. I ended up at the ER and couldn’t talk. About 30 minutes or so after giving me Ativan I calmed down and I was sent home. From this point to one year later I had constant pain in my neck and back. I went to a sports medicine doctor/orthopedic. He did an MRI stating I had a pinched nerve in my neck, every disc was degenerative, 2 bulging, and 2 herniated. I’ve never once had an issue with my back. I thought it had to be wrong. I was cleaning houses at this time. I went from doing this in 4 hours to 9 hours because the pain was so intense. I even told my parent I feel like I can be on the show the monster inside me because it felt like I had something in there multiplying. I’m still having seizures weekly and now numb hands and pins and needles. I had to sleep with carpal tunnel syndrome gloves but didn’t help much. So I was tested for that. Nothing. My orthopedic did an MRI of my hip and there was nothing wrong. Yet my other hip had a tear I didn’t feel. He diagnosed me with neuropathy. I decided to see a rheumatoid arthritis doctor who diagnosed me with fibromyalgia. I said wait don’t they hurt to touch. He said yes. Then why are you diagnosing me with fibromyalgia when whatever I have is deep like in the muscles or bones even. He still insisted I had fibromyalgia. I told him I can’t see a doctor the just pulls a rabbit out of his hat and I was done with him. So now I’m in so much pain I ended up at an aftercare. Just so happens this doctor is always there. He said I had muscle spasms and did some shots in my neck to calm it down. It does nothing. He also gave me hydrocodone 7/325. It didn’t touch it. So I downloaded an app. Webmd and put all my symptoms in. By now I could barely walk now too and had to qui working. Within a few days I was permanently bedridden. After putting my symptoms in out pops one choice, Lyme. I look it up and I wanted to die. I showed my son and he said that’s exactly what it looked like. So I go back to this doctor and tell him I want a Lyme test. Get this. He laughed at me and said wow aren’t you grasping for straws. So he takes my blood and calls me the next day saying it’s negative. I said there is no way you have me a Lyme test then because it takes 4 to 6 weeks to come back. I then started having panic attacks and was told it’s depression. Ummm I think I would know if I’m depressed and even with all this going on I’m still very happy. So they put me on celexa made me so sick and way worse so I stopped it after 2 weeks. Then I went to another neurologist. He put me on cymbalta for the nerves and ran tests for Lupus and sjorgens. Both negative. Still nobody would even listen to me that I had a tick with the bullseye rash. Every time my answer was we don’t get that in the south. Ummmm I’m proof we do. Why aren’t you hearing me. This is almost one year into it and not knowing any better I finally did get depressed. I told my parents there is a living creature in me multiplying and slowly killing me and every one of these doctors broke the oath they take. They became doctors to take care of people yet they were letting me die. I was so scared. I looked like a cross between Parkinson’s and MS. So, I decided I wasn’t dying like this. I have kids I need to be here for. So I got on the internet and studied like crazy. An easy 6 hours a day I spent reading and finally discovered a group of doctors called LLMDs. However, there are very few and most weren’t taking new patients. This was now May 2015 and I found one in Houston but my appointment wasn’t until November. I literally fell on the floor crying my eyes out. Then the phone rang with a doctor willing to see me that week. Thank God. So, I took the test and during this time I started getting lumps under my skin and a constant ringing in my ears that I currently still have. 5 weeks later they want to see me. We take our miserable road trip. It’s very painful just to sit that long. I was positive like I already knew also had Bartonella (cat scratch fever), Babesia (acts like malaria), qfever (basically fever every evening). I cried and hugged this doctor as if I’d been knowing him. I finally had a chance to beat this. So almost one year to the date of being bit I started oral antibiotics. The spirochetes were very unhappy. I had the worst case of the herxheimer reaction. Basically, it’s toxins building up in your loss from the die off of spirochetes which is Lyme. Omg was I sick and in pain. All I did was sleep or cry. After 6 months I ended up back in the hospital. I had to have an endoscopy and colonoscopy. The final result was no more oral antibiotics. My GI system couldn’t handle it. So, thank god I got on the picc line. I did a fund raiser because it’s $400 per week. I had to apply for the hardship program through bioscript. They approved me for one year and I feel so blessed they gave me this opportunity. Honestly the picc line is the way to go. My lymph nodes went down, no more neck and back pain , had one 5 min seizure today after not having one for one year. I’m not vomiting nor nauseated anymore. I find my mind is becoming clearer. However, I know I still have to treat because I still can barely walk. Personally what the CDC has done by denying chronic Lyme and taking licenses away from the doctors who followed their oath and were good doctors, I feel everyone of them should lose their position on the board and there should be major fines or even jail for all the people I know who have died over the past year from chronic Lyme. I have decided to make something positive out of this. I created a page on Facebook called Lyme Facts and Current Studies. I have also talked 8 people so far out of suicide since the percentage is 40%. Nobody should die over the CDC’s greed for money. To me it’s them who have caused these deaths and should be prosecuted as so. Please share this and save lives.

    1. It’s the same person. I realized I skipped a word needed in the herxeimer reaction. It’s die off of the spirochete where their toxins build up in your blood and every symptom you had been having increases by 50%

  12. Lyme positive after years of suffering. Finally diagnosed in 2013 cdc positive for lyme .been struggling since been on antibiotics and natural herbs for lyme since 2013 and still sick .i guess all this ends when our lives come to an end.cds and pharmaceutical dont want us healthy. No money in it for them if were healthy.we need answers. Im from Houston Texas where lyme is not suppose to be here and everyone in the doctors office is being treated for lyme.

    1. I actually cried tears of joy, that my Houston ILADS doctor found Lyme along with autoimmune inflammation, ME/CFS, EBV, neurological Lyme, Bartonella, and nerve damage from all of these problems. I had been suffering for 10 years and seen at least 2 top docs from almost every specialty in medicine. I was really beginning to feel like a freak of nature. I’d been diagnosed with so many “rare” syndromes and conditions, that I should be dead by one. But, every weird symptom is caused by chronic Lyme disease.

      I’m living proof that it exists in Houston. I’ve never seen a tick on me nor on any one of my animals including horses. I used to breed horses, but Lyme has taken away that life. I can no longer take care of my horses, so I had to sell them 4 years ago. It breaks my heart to even think about my beloved companions for 14 years.

      I am a nature photographer, and I feel that I got Lyme taking photos in the woods, parks, high grass, or even on my own ranch. There is no excuse for doctors to have not even looked for lyme in all my examinations! The CDC and the Infectious disease doctors should be taken out and shot. I tested negative on the ELISA and STILL DO! But, my ILADS doctor ran a battery of tests, that showed Bartonella right off the bat! Hopefully, the CDC can get an overhaul and a reality check as the swamp gets drained……..

  13. I am a mother of three beautiful children. I have chronic Lyme and have had it for the past ten plus years. I initially consulted with my family doctor, and was basically told it was in my head and I needed to try harder to lose weight. Lyme has robbed me of time I could have spent being a mom, getting work, and having a life. Instead, since insurance doesn’t cover treatment, I’ve been made into a cash cow for pharmaceutical companies. I want my life back. I want our medical system to act in a responsible way. I’m frustrated and disappointed. I’m not a lazy person, nor am I looking for an easy ride. I want my life back!

    1. What we need is the CDC quit taking money from the insurance companies so it decreased the cost for the insurance companies by saying it only takes 2 weeks caught early and chronic Lyme doesn’t exist. They should all be in jail for fraud and add a new board of doctors who chose to be doctors because they want to save people and don’t care about the money.

  14. I have had Lyme disease since early 1990’s it was only recently diagnosed april 2014. My beautiful daughter who is now 18 years old was born with it she was considered failure to thrive as an infant and again just this last fall. She is also losing her hearing from it and now has to use hearing aids. If they would have correctly diagnosed me years ago this would have never happened. I have 12 co-infections and Idiopathic Intracranial hypertension that was caused by the lyme disease last year alone we spent $45,000 out of pocket that our insurance would not cover because the CDC says that up to a month of antibiotics should cure it no matter when they find it. Our family is now having to chose which of us gets treatment (of course daughter first adn foremost) because we can no longer afford the expenses. My husband is now lyme postive. This disease sucks.

    1. We are dying of slow death because of this awful illness and co infections. I have been sick for four yrs. I have tried numerous treatments antibiotics, bee venom therapy, biomagnetism….. spend all my life savings on treatments now saving again for stem cells therapy . I got fired by doctor when he found out I have Lyme disease . We been having in our Lyme community people dying left and right .

  15. Late stage nuerlogical Lyme disease gang has went untreated for 15 years! Dr’s don’t believe in it! How can they not they believed in syphlisis it’s because pharmacy makes millions on us uses us a guinea pigs for every other disease out there! Lyme bites an we need a cure!

  16. I remember last year National Geographic ran an online story about Lyme, and how it is just spreading so exponentially. Keep in mind this is a scientific journal and not a medical one, so the story was based on more biological perspective than a medical one. Within an hour of the article’s posting there were hundreds of testimonials from readers about years of misdiagnosis, denied any illness existed at all, deaths of loved ones from Lyme,etc. The next day there were thousands and thousands of replies to that one article. In the beginning the online editorial staff were responding to what replies they could manage, but I honestly do not think even they were able to anticipate the sheer volume of raw replies that this one article generated.

  17. I left a story under the Lyme story on 2013. Otherwise I could not figure out how to post. So search Lyme on there facebook and you will see a story that ran in 2013 and I posted a comment under that, as I saw no other options. On there cnn feedback you are limited words.

  18. lisa, i can’t figure out where to place my comments on their FB page?

    help needed for this perplexed senior citizen.

    i suggest you add more comments above on FB page so others don’t encounter what i just did & leave vs. posting….thanks sweetie )

    bettyg activist

  19. at their site just now:

    Borrelia/Lyme/Tick disease & 25+ vector-borne diseases need to be covered by our HEALTH insurance companies vs. our treatment is considered “experimental therapy”!! BS !!

    Betty & Jack Gordon’s story…82 years as chronic Lyme disease patients; EACH MISDIAGNOSED for 35 years!

    • last 7 minutes, I/Betty Gordon, talk as LBD widow & what Duray research has given me….SCIENTIFIC medical evidence for peace of mind what Jack HAD vs. what he DIDN’T have!
    • 1.37 hours

    Jack’s brain poster board showing his LYME/LEWY body dementia causing visual/VIOLENT hallucinations like ROBIN WILLIAMS.

    had 20 characters still left! 😉

    will post this also on their FACEBOOK page also.

    lisa, thanks for all the links & originating this TERRIFIC, effective idea.

    i’ll post it on 2 lyme boards i post daily on.

    betty gordon, iowa activist

    lyme/vb diseases, lewy body dementia, parkinson’s, alzheimer’s, diabetes, cancers, etc.

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