How many years did it take you to get diagnosed with Lyme?

How many years did it take you to get diagnosed with Lyme?

online poll by Opinion Stage
These were some of the answers given on a Facebook Poll in a Lyme Support Group
  •  5 years
    Actually I’ll rephrase that…..2.5 years when I was really sick, but was sick off and on for 15 years.
  • 23 + misdiagnosed
  • 2 1/2
  • I was misdiagnosed with MS in 1995, but have been sick off and on before that. Was properly diagnosed in 2007.
  • 24 years – out of the country in the U.S. (I am Canadian).
  • 15 yrs
  • 10
  • I only have a Clinical diagnosis,it took 6 months.
  • Only 1 year and 2 months but misdiagnosed for 10!
  • ten
  • 10
  • 18
  • I have been sick for 40 years but actively had been searching for answers the past 20 years. Finally was diagnosed in 2011. So i guess you could say 20 years.
  •  18 years. Use my name, lol, I don’t care.
  • 18
  • 20 yrs
  • Misdiagnosed for over 20 years.
  • 3
  • At least 16 years
  • 9
  • 6
  • 12 years
  • 22 (bit age 2)
  • 49 years -got it congentially
  • Over 10 years
  • 31 years!
  • 14
  • 36 years…to figure it out myself on the internet before finding an llmd who finally diagnosed me with the three b’s.
  • 30
  • 30 – I’m only counting the adult years, going doctor to doctor. Had issues as a child, too, and I think I may have either been born with it, or got my first dose as a child. Rashes started as a pre teen, and it just so happens, that RMSF was being researched on Long Island from 1971 – 1976. We didn’t move to Florida til 1977.
  • 2 years I knew I was sick and no one would listen to me. I researched the disease and found an LLMD, had positive western blot after several negative Elisa’s
  • I still think I have it…and it has been 6 yrs. so far. But, going to see a Lyme literate Doc. He will get to the bottom of it!
  • I am at least 21, could have been 36. My husband is 38 and our son is 15 and our daughter is 10.
  • Son started kindergarten. Was a senior when correct diagnosed.
  • 12 yrs
  • More than a dozen but could be as many as 30.
  • 24
  •  15
  •  6.
  • I think I had it all my life! I am 53 and have always had health problems but I was still healthy,just stuff like migraines,etc. but I would say the the past 21 years I started going to the Dr. a lot so that’s how long it took,finally I got re-infected 2 1/2 years ago and got severely ill and paralyzed for about 4 hours and I was so sick,I had this rash under my arm and it was very hot and changed in patterns everyday,finally it looked just like a target /bulls eyes and I was laying on couch VERY I’ll for a whole week after tick bite and being re-infected and I was watching world news and Diane Sawyer mention Lyme disease (by the way I suspected I had it in 2009 and Dr. took blood test and said no,he was mainstream too) she mention the symptoms and the rash and I was so sick laying there,I jumped up and said OMG! I KNEW I had it!

  • SO I went back to same doc not knowing there were LLMD doc’s and he took another blood test this time saying it was POSITIVE!Along with co infections I found out I had later from LLMD! I was so mad! So he gave me antibiotics I had allergic reaction that’s when I had to go the natural way,that’s when I found out there were LLMD,that’s when I looked for one and found her! So I wasn’t aware there were Lyme Literate docs and I started to study about it and found a good one close to me that follows DR. Klingheardts protocol,she tested me too and said I was chronic Lyme and had very low CD57 test. There that’s my story LOL Hope it helps ! all in all I would say 21 years it took for me to find out!
    Well, I’m 43 and still have yet to be officially diagnosed by a doctor!
  • First bite in 1965 aged 12, 2nd bite 1985 and third bite 1994… only diagnosed in Feb 2010
  • 10
  • 9yrs
  • It took 3 years of non stop Doctoring and testing for every other disease under the sun. I ended up figuring out what I had on my own and had to find a LLMD who would test and treat my correctly for Lyme and Co’s.
  • I have no idea when I contracted LD. I have hosted many ticks throughout my 70 years of life. I was diagnosed about 18 months ago.
  • 29
  • Well if my doc is correct and I contracted it as a child, about 30 years.
  • 10
  •  same here well just turned 34 and dx 5 yrs ago but the majority of bites “IN THE HUNDREDS” EVERY WKND of my childhood prob 25-50 pulled off my head, twice a wknd as far back as i can remmeber even tho i think i was possibly even born with it- my 1st dx..
    It took 19 years and the last two of them was a non stop doctor visit. I had every DX from fibro to cancer for it all to come down to Lyme. And to boot my parents had the tick tested that bit me when I was 12 yrs old yet they still said it wasn’t after my initial treatment of antibiotics for thirty days. My story could be a book I wish I had fought harder and not believed them cause now I have four children who could have this horrid disease.

Leave your comment down below to how many doctors it took you to get diagnosed. Then click here to leave a comment on the “Lyme and Suicide” article on CNN. Tell CNN your feelings on Lyme Disease and losing our friends to this battle.

83 thoughts on “How many years did it take you to get diagnosed with Lyme?”

  1. 6 long years…over 10 doctors and specialists….many misdiagnosed put on all kinds of different meds including steroids…nothing helped…in 2nd month of treatment…all kinds of good 5things starting to happen!

  2. Almost 13 years from 1988 to 2001 tested every year sometimes 2 or 3 times a year 4 different hospitals. Then it got so bad with joint pain and numbness and fevers and shaking hands and shooting pains and eyes went from 20/15 15/15 to needing bifocals and galasses to read with. Thanks medical community . I treated almost 13 years 12 of which were everyday after getting a llmd. But since i had it so long it keeps coming back, im now overweight obese yes and have torn so many tendons and blwn knee and blown shouders. And I am going to see him in aug 2015 again. Pray know one in your family ever gets this God Bless.

  3. This year I was diagnosed, and I’m 42 now. But I must have had it since I was 8 years old or so.. Never had the bullseye rash though.
    In my early teens I developed some serious physical and mental problems, but the doctors couldn’t find anything off course. Since then my life went down hill, and now I’m mostly house/bank bound. Lost my job, my friends, most of the family, my health…
    Still trying to hang in there, but it’s getting difficult at times. What’s the point in living life like this, I wonder sometimes…
    The treatment costs a huge amount of money, which I don’t have anymore. The diagnose is not accepted, because I have my tests done in another country..
    At least I know now I have Lyme desease, but my future is very uncertain now..

  4. I was born in 1967. I grew up on long Island in NY. I’ve been sick since early childhood (I guess around age 4-5) I lived on 4+ acres of heavily wooded property that I played in everyday. I wouldn’t even begin to emagine how many ticks were pulled off of me, my brothers and all our pets!

    Every Dr. I saw for years and years believed “I must have Lyme Disease! Even stating, “Your a text book case!” then my Western Blot would come back CDC neg. I have no idea if and what bands I may have been possitive on, only that I didn’t meet their criteria. Over the years as I got older, I was bounced from one Dr. to the next. Each one I saw would initially test me for Lyme and every time it came back CDC negative! I was diagnosed with MS, ALS, Lupus, Addison’s, Congenital Arthritis, Fibromyialgia, depression (Many, way too many times) My reponce’s were “But I’m not depressed, I just keep getting terrible infections, I’m not…my foot broke again while walking! I’m not…I just completely lost my eyesight for 10 mins for no reason! I’m not… I keep running a fever, getting rashes, have horrible debilitating pain, lost the ability to use my right arm for a week, suffering from vertigo and have been on the floor vomiting for 3 days if I dare move my head ect, ect… Fast Fwd I got married to my HS sweetheart. We bought a house not that far from the “Great and Almighty Stony Brook University” No, they were of no help to me! 🙂 I gave birth to 3 live children, all boys. They were all sick with infections from birth on!

    We moved to NC in July of 2002. I rapidly went down hill and was basically “brain dead” and would have preferred being bedridden. However, I had 3 young sick children (ages 3,6 & 9) who were depending on me! I finally found a LLMD early Spring 2003. Igenex confirmed I as well as all my children had Lyme Disease and several Co-Infections. My husband test result came back equivocal. I was immediately started on IV antibiotics asap! It was a long rough road but eventually due to the IV antibiotics, I had my memory, cognitive and executive functions restored! I physically made great improvement as well.

    Then, one very sad day “out of the blue” both our LLMD’s came under attack! My medical insurance company took full advantage of this and refused to pay for any Lyme Treatment. My personal GP received a strange call, basically warning not to treat any one in my family for Lyme, and finally a false and ridiculous report (done with malice) was sent to CPS regarding the health and care of my youngest child! We could only pray the treatment we received was long enough!

    Over time I’ve seen my remission end and the illneses have come back with a vengeance! Not only for me but two of my 3 children as well. I cannot find a doctor to help us. My youngest son started having seizures in Nov of 2013 which have drastically gotten worse the past few months.

    I have had Lyme Disease for 4 decades!

  5. I took me 30 years to get a diagnose. I’ve seen at least 40 doctors… Hideous migraines, joint pains, paralysis, fatigue, serious digestion problems that led to numerous operations,… You name it, I had it. Last year doctors suggested the take away a part of my bowels and to inplant a stomacher bag. This was the breaking point for me, no more! I finally had my diagnose 8 months ago through the elispot. Treatment is ridiculously expensive and very aggravating for my body, but I somehow hope that there is a chance of improving my life conditions.

  6. It took 9 years to get correctly diagnosed with Lyme Disease & co-infections (Bartonella, C.Pneumoniae). I was misdagnosed with CFS/ME all this time, was told my symptoms were psychosomatic and was sent to cognitive behavioural therapy. This didn’t help but I still didn’t receive any proper medical care afterwards. I was unable to function in daily life and in the end was unable to walk. When I finally got diagnosed, my breathing-muscle was paralyzed for 70%. Previous doctors had dismissed my difficulty breathing as ‘hyperventilation’. I was finally diagnosed with Borrelia because it showed up in a PCR test, which can often be false-negative but can’t be false-positive. So I am 100% certainly infected with Borrelia and my antibody (ELISA) test has always been negative. The ELISA only has a sensitivity of 34 – 59% yet doctors believe it to be infallible. Because this outdated and useless test is still used by most doctors, my Lyme Disease is now chronic. For Bartonella and C.Pneumoniae I actually do have antibodies, but no doctor before my current one had ever bothered to test for it. Co-infections need to be taken more seriously as well!
    Lastly, I don’t recall a rash or even a tick-bite. Doctors need to always consider Lyme Disease even in the absence of rash/tick-bite.

  7. 4 years to diagnose – told I had Fibromyalgia, ME/CFS, Musculoskeletal disease Polymyalgia Rheumatica put on 20 months of steroids before a chance course of antibiotics led to doctor suspecting Lyme Disease
    Made a good recovery on many many months of antibiotics.

  8. Decades! 1981 Fatigue, 1984, Depression, 1986 Mono, 2002 Fibromyalgia, 2004 Depression/Anxiety, 2009 Interstatial Cystitis. Finally in 2012 a Positive Igenex test revealed Lyme.

  9. I have been sick since I was little and have been seen by specialists for almost every body part. I think it’s fair to say between 30-40 drs before I got diagnosed w late stage neuro Lyme. I hav 3 boys who all hav it thanks to me. I was diagnosed in a very interesting way. I submitted an email w info on my sudden undiagnosed seizures that hospitalized me for several wks 4 yrs ago to a A&E network pilot show. They picked my story. And when it aired somebody who had Lyme saw it and found me and told me to watch the video “under our skin” and it was like watching myself self so I got info and a llmd and got tested and I have it and co infections as well but can’t get treated the way I need since I lost my job and haven’t worked since. Most drs say u r crazy or want attention. They r uneducated and dumb and aren’t willing to hear u out. Lucky for me I now a Lyme community behind me and my family and we r slowly starting some supplements for the kids to help them since I hav been undiagnosed for soo long that I am a very complicated person for drs to treat. Spread the word and help save somebody’s child from being born w this horrible disease. Unfortunately some lymies r soo sick w infection in the brain that they commit suicide. My personality has changed drastically in the past 4 yrs for the worse.thank u for talking about this controversial subject.

  10. I was born with it and didn’t know it. I’ve been sick with things my whole entire life. It has robbed me of having a full, normal, functioning life.

    It took me 52 years to get diagnosed. That’s cruel. No one thought of even testing me for this. I had to do my own research and figure it out myself!!

  11. It took 16 years for me to get a correct diagnosis. I was tested for Lyme early on, but they used the ELISA assay which has a high false negative rate. In the intervening years, I was told I had everything from MS to Sjogren’s Syndrome to Fibromyalgia or that I was just plain crazy. I finally was tested with Western Blot in 2011 and got a positive Lyme diagnosis. I have neuro Lyme symptoms and I haven’t seen much results from antibiotics yet. It may be hat the infection is so disseminated that I won’t see much more improvement, but I remain hopeful!

  12. 40 plus years but did not get really sick till the last 20. Sad when I think of how much of my life was wasted by infections that should have been easily stopped.

  13. It took over ten years. Ten excruciating, torturous years. I went through 24 doctors in Los Angeles. I was tested twice with a negative result because they used inaccurate testing and the bacteria had been in my body too long. Finally a smart doc knew how to test me with an antibiotic challenged test then tested me through Igenex Labs. Sure enough, I was CDC positive. Most doctors are clueless about this disease. Now i am getting better, but treatment has been brutal. I will get my life back because I am lucky enough to have the resources to pay for the necessary treatment and Lyme Literate . Most do not have the means to pay for proper treatment. I’ve seen countless people and friends languish because they can not afford treatment. I know way too many people who have taken their lives because of this disease. Thia disease effects every organ and bodily system. It get into the brain and nervous system and affects the infected person psychologically. It affects the HPA axis and hormonal systems, all of which has an effect mood. Add to that unimaginable amounts of pain, an enormous amount of symptoms, family, friends and doctors who do not understand, and the inability to get proper treatment and you have a recipe for suicide. More research needs to be done. More acurate testing needs to be developed and widely used. More doctors need to be trained to look for this.

  14. 64 docs over 24 years before I diagnosed myself at age 32. I had 18 misdiagnosis and this has completely stolen my life. I tested negative a dozen times with the current standard testing. I unknowingly passed it onto my daughter in-utero as well. She is 8 and also in treatment.

  15. 14.5 years before a positive Lyme test. And the sad part is that not one doctor or person ever suggested lyme…EVER! First diagnosis when symptoms got really bad was mono.

  16. I guess I didn’t answer your question directly. Looking back if say 3 primary care doctors, 4 pain clinic doctors, 6 doctors at one of the most prestigious research hospitals in the US (I don’t think they “do Lyme” research, or at least look for it when dealing with multiple symptoms), a neurologist, a rheumatologist, a psychologist, 3 colon and rectal doctors, and probably more. Not one brought up Lyme. I started at a new pain clinic and my new Dr there wanted to test for everything to try to get to the source of the chronic pain, if possible.

  17. I pulled an embedded deer tick in 2006 and my nightmare began. That first year experienced flu-like symptoms which led to bronchitis, then to pneumonia. About a month later I had horrible stomach and other GI/bowel issues that lasted weeks and my Dr had me tested for microorganisms. Tests were negative. My LLMD now suspects it was a Herx reaction from the 1 week of antibiotics I was given for pneumonia. Not enough to knock out the Lyme. Just some die off.

    That year I had heart problems that landed me in the ER. I also had a week long migraine later diagnosed as occipital neuralgia, but common with Lyme. The GI/bowel problems and meds caused such major constipation, I had a major surgery in that area, followed by 3 additional procedures because it wouldn’t heal. Still hasn’t to this day.

    Medical issues have continued to grow. Current diagnoses are ani lavator syndrome, pelvic floor tension myalgia, piriformis syndrome, sciatica, arthritis both knees with multiple bone spurs, plantar fasciitis both feet with several areas of tendinitis, occipital neuralgia, major depressive disorder, anxiety, fibromyalgia, and others.

    After 5 years of pain clinics, multiple treatments and meds, in January I was finally tested for Lyme and the result was positive. One Dr said I needed to take it seriously and find a specialist ASAP but she couldn’t refer me. I took the results to my primary dr and she said it was false positive. So now I’m working with a Lyme Literate Medical Doctor. So it will have been 8 years from bite to treatment. My life these past 7 years at least did not need to be like this!

  18. It took 20 years of going from doctor to doctor. I finally was properly tested for Lyme. It came back positive and now I have so many more complications because of how long it took to be found. Now, the battle is finding a way to properly treat not only the Lyme but all the complications in thyroid, GI, neruo, etc.

  19. Started with neck pain over 2 years ago, then health started declining. If someone in the medical community would have mentioned to me “Maybe you should get tested for Lyme,” I wouldn’t have spent over 2 years heading downhill at what is still a very young age (30’s). I had to learn about Lyme from Facebook and ask to be tested from my current doc.

  20. 3.5 years. The problem is that almost 11 years later I’m much worse and not functional. Even though I ran to my PCP with a bull’s eye, he didn’t know what it was, and it took about 6 months for me to become symptomatic. I later learned that he ran multiple Lyme tests over the months and, apparently, none came back positive according to ELISA or CDC Western Blot criteria. I finally moved on to other doctors for help with the crushing fatigue that had developed, only to be told repeatedly that nothing was wrong and it was all in my head.

    1.5 years after the bull’s eye I could no longer work due to the fatigue, and 3 years after that a chiropractor said “I think you have Lyme, but I don’t know who can help you.” She recommended Stephen Buhner’s book “Healing Lyme.” It took another 6 months to find and see a LLMD, once I remembered that years before a friend’s daughter had been very ill with Lyme disease (multiple infections), and she had an extremely difficult time getting treatment for her. She scooped me up and drove the 2.5 hours to my first appointment. Unfortunately, my body was extremely sensitive by then, and I did not tolerate treatments well at all. So, that was the just the beginning of the Lyme journey and searching for what treatments would work.

    It could have been so much simpler. I didn’t have problems with antibiotics at the time of the bull’s eye, nor the extreme sensitivities that developed due to years of treatment delay. It’s been almost 11 years and I’m not a functional person.

    I wasn’t able to be there for my Dad through his decline and passing from small strokes (later retracted), dementia, Parkinson’t and Lewy Body, which in retrospect has all the markers of Lyme complex, yet no diagnosis or treatment. They didn’t really know what was wrong with him. Now it’s my Mom’s health, with some overlapping diagnoses, including Parkinson’s and Lewy Body, and I’m still not in a position to care for her needs or share quality time together. She doesn’t want to believe that she has Lyme, but years of tick bites, the last one untreated as the doctor angrily accused her of not protecting herself and walked out of the exam room, and her symptoms/autoimmune conditions indicate otherwise. One brother has life-debilitating symptoms and at least one untreated tick bite that I know of, and he has no interest/belief in pursuing diagnosis or treatment.

    This lack of doctor awareness, denial, education, and criminally inadequate IDSA guidelines for Lyme complex has huge ramifications, changing the function, support, quality of life, relationships, and care within entire families. It’s too late for too many, and the epidemic continues to explode. The current state of IDSA and CDC diagnosis and treatment guidelines are monumentally accountable for the epidemic in progress and the impact on the human condition in the U.S. and around the world. Change must come.

  21. We passed through nearly a dozen years and twice that many doctors before I was diagnosed. The original diagnosis was fibromyalgia, chronic fatigue, hypothyroid, and high rheumatoid count. Later, along with continual weight gain, sleep apnea, high BP, eye problems, neuropathy (a good three years before the blood sugars started rising), borderline diabetes, increasing food sensitivities/environmental allergies, digestion problems, etc. And now, into the fourth year of treatment, we also have pustular psoriasis (an autoimmune disease) and it has been verified that the hypothyroid is caused by the Hashimoto autoimmune disease. I went from healthy and a very active lifestyle to disability and increasing problems seemingly overnight. I was never aware of a tick bite, though with all of my hiking, backpacking and camping all over the West and the Northwest, it is very likely one was involved. I’ve been tested for a lot of things.

  22. I went to my Doctor 2 weeks after a camping trip to a MO State Park. Although I presented flu-like symptoms and a 5″ diameter bulls-eye rash, when I asked if I had been infected with Lyme I was told, “Absolutely not! There’s no Lyme in MO.” I would hear this from doctor after doctor. I saw at least 26 in all, including four doctors at the Mayo Clinic. With the exception of Mayo, not one doctor ever did a Lyme test, and Mayo tested only because I demanded it. My Western Blot came back ‘borderline’ and result was deemed negative. It took 11 years and 4 months before I was correctly diagnosed. By the time I was, my condition was so critical the doctor began treating that same day. He felt I may not survive if we waited for test results. My Igenex Western Blot tested CDC positive with 5 bands. I have Late-Stage Neuro Lyme Disease and have been in aggressive treatment 5 years. Unfortunate the very first doctor, and all 25 after him said the same thing, “No, you don’t have Lyme.” Had I been treated at that first appointment, then I could now say, ” I no longer have Lyme.” Unfortunate, there is no cure for Late-Stage.

  23. I’ve had symptoms all my life (now 49) so ? congenital. I’ve had many of the classic symptoms and numerous flare ups at challenging times but no doctor ever mentioned Lyme or co-infections. I got tested because I researched the symptoms when my daughter was ill and realized I was a text-book case. Went straight to the integrative doctor, after the PCP said I didn’t have Lyme. Mainstream doctors seem to know very little about this illness here or in the UK.

  24. I lost count of how many doctors I visited years ago. I have been to every specialist out there , included 2 IDSA physicians ( female in Boise, Id, and dr. Marsh in Tacoma) The IDSA physicians were the most demeaning and continually quoted the guidelines they approved. Because of my continued eye symptoms …. It was my eye Dr. Who put the pieces of the puzzle together. Something that could have been easily detected and treated if physicians were educated correctly has turned into decades of pain and illness…. With prolonged treatment of 3 plus years with minimal improvement.

  25. It took me three years to have a reliable blood test for Lyme – in Canada, doctors don’t believe in Lyme and the testing here (ELISA) is notoriously unreliable. My IGENEX came back positive, but I still don’t have a “real” Lyme diagnosis from a doctor, I just have a positive blood test (if that makes sense).
    So far I have seen over 10 specialists and have been diagnosed with various conditions: neuropathy, dysautonomia, panic attacks, anxiety etc.
    I’ve had countless tests and have tried many meds (as prescribed by my specialists) only to see myself getting worse either because of meds side effects or simply because my condition keeps worsening in time.
    Our doctors need a reality check. They also need to lose their God complexes and start treating us like human beings instead of attention seekers. I don’t want to be sick, or bedridden. I don’t want to go to the ER or ha e 3 doctors’ appointment every month. I want to live a normal, healthy, purposeful life. I want to feel useful, not a burden like I am/feel right now.
    I used to be a positive, outgoing person, now I am bitter, depressed and sick.
    We need help, we need our doctors to listen to us, show compassion and treat us rather than dismiss us or tell us “I risk losing my license if I treat you properly”

  26. I’ve had various health challenges since I was a kid varying from chronic sinus infections to chronic digestive issues, scoliosis, chronic headaches & migraines & finally being told later it was all psychosomatic & a ‘conversion disorder ~ NOT!! Finally at age 54 I saw a doctor of Integrative Medicine who tested me w/an IGENEX/Western Blot blood test that came back CDC+ for (Chronic) Lyme Disease! I had never heard of it but I sure had a lot to learn! The year I was diagnosed, I had suicidal ideation due to chronic insomnia & was hospitalized on a 72 hr hold. I didn’t want to die ~ I just needed to SLEEP!! Ten years later I am still struggling to sleep, a common symptom of Lyme Disease! And a lack of sleep easily leads to depression which can easily make one suicidal. Ugh!!! We need HELP not more refusals to treatment, insurance coverage & denial that chronic lyme exists!

  27. My daughter was bit by a tick in 2008 at the age of 13 in ohio. Positive western blot, bulls-eye rash and all symptoms. Continuously told Lyme is not in ohio for 4 years. Finally started treatment at age 17 when we found a Lyme literate dr in PA. Now diagnosed chronic.

  28. I think I’ve had Lyme & Co-infections for at least 15+ years. I have had weird, unexplained symptoms off and on for years. Had two really difficult pregnancies 13 & 15 yrs ago and had major heart problems while pregnant. Specialist at Johns Hopkins said he had no idea why and only when pregnant. I was on bedrest for 4 months. Second child was born with mild disabilities. Was managing okay until two years ago when I had a meniscus tear repaired in my right knee. It never got better and I never fully recovered. Then I had a root canal in May of 2013 and literally fell apart over the next 4 months. Thought I was dying! Took me 4 months of seeing 4 different specialists and being told I may have Lupus, MS, Fibromyalgia or CFS but test results all came back fine. When I mentioned to each doctor that I thought I had Lyme, they looked at me like I was crazy. One doctor (my cardiologist at Johns Hopkins) told me I was psychosomatic and had been for years. I finally took matters into my own hands, called a friend that I knew had an LLMD, made the appointment, got positive test results and started treatment within a month. I have Lyme, Babesia, & Bartonella. Started treatment in Dec. 2013 and this month I’m finally seeing major progress from following a similar protocol to Dr. Horowitz’s & Dr. Burrascano’s protocols. Treating with abx, supplements, homeopathic treatments, tinctures and detoxing (including massage, Reiki, lemon water, epsom salt baths, coconut pulling, etc.) and gluten-free diet! Just recently found out both of my kids are positive. Pretty sure I gave it to them in utero. They will start treatment once school is out. LYME SUCKS!

  29. Hi. I was diagnosed in about two mnths. With positive test results I was turned away from many drs. They wouldnt treat. Took me three yrs to find an llmd. Now the disease has gotten into my joints…I have a small brain lesion. Had I been able to find help sooner…..I want to add here tht I take care of my disabled son who was born with a brain tumor n mild c.p. hes 22 ,but much like an infant to a four yr. Old. In diapers…no speech. Ihad to ttake him in his wheel chr. To all thoes drs. Visits only to be turned away. Sometimes they wouldnt even get up to help me with the door…I struggled…crying in pain. My sin seeing me cry….he would to. When I asked for help with the door…nurses sitting behind the desk said they werent allowed to lesve the desk…..when their were four others just sitting there who couldve answered a phone. The attitudes of the medical field needs to change. We are treated poorly. Alot has to change. Pleade help us. Please. Thank you for listening.

  30. 4 doctors before I found one to help. And then it was only because I finally had a positive test for Rocky Mountain Spotted Fever. But it turned out a test I had years before had a positive indicator for Lyme…it just didn’t meet the CDC’s standard definition. Plus I contacted two infectious disease specialists who said they could not help me. They said if 2 weeks of antibiotics didn’t work than they had nothing to add!

    Fortunately, I found an MD who specializes in tick borne illnesses. After 3 years on antibiotics and other treatments I am tremendously better than I was in 2010. I’m very grateful for my specialist and for my insurance coverage which has been cooperative every step of the way.

  31. I’ve had symptoms since early childhood that got much worse when I was 15 years old.
    I was only diagnosed at age 29.
    I was extremely ill by then and even had to be hospitalized a few times.
    I believe that I have congenital Lyme but I also had MANY tick bites throughout my childhood and one when I was 24 yrs old. They possibly brought in new strands of infection and co-infections.

  32. 38 years, then I figured it out myself from a Dr. Phil special on lyme. My 3 children were born with it and went 26, 18 and 17 years before they were diagnosed following my diagnosis.

  33. Went in diagnosed for years and have had near 5 years of treatment since. I have maybe recovered 35%.

  34. I started going to the doctor at 30 because for years I had noticed a lot of neurological issues and immediately the tests started. I have had so many tests run over the years and all have come back normal except for cholesterol and triglycerides but no one tested me for Lyme because of the area I live in is
    supposed to be Lyme free. They believe
    that I either got the Lyme when I was 13
    when I had a bullseye rash at the time
    and lived in Georgia or I could have
    been born with it as we have recently
    found out that my mother has it as well.
    I am now 51 so have been battling this
    for a long time. I only found out a year
    and a half ago that I am CDC positive for
    Lyme. Even with that CDC backing the infectious disease doctor I was sent to told me it was a false positive because it does not exist in my area. I live in Florida and we have deer everywhere and lots and lots of ticks. I was diagnosed with fibromyalgia at 30 and at 49 asked my doctor when do you quit blaming fibromyalgia for everything? He kept testing me for thyroid issues and lupus and MS and other awful diseases but never Lyme. FINALLY I went to my OBGYN that deals with natural medicine and traditional for hormone issues, after she got my hormones leveled out I still
    felt horrible and she said that something
    else had to be wrong. She ran the test
    for Lyme and even told me then that she
    could not treat it because she is an
    OBGYN but if the doctor I go to tells me
    that it is not a positive result to move on
    to the next Doctor until I find one that
    knows Lyme. I was puzzled at first but now completely understand where she was going with that! I thank God everyday for her!

  35. Backpacker on The AT I was 100% sure of thick bite infection from the onset. the whole list symptoms, except arthritis, were slow to establish and flared after corticosteroids injections following a major sport injury. That was 7 years of medical specialist ping-pong, (and was extremely costly even in Canada) for a first clinical Dx by a top of the microbiologist . The standard Canadian Elisa serology came back negative. I nevertheless got Doxy for over a month, Symptoms gradually came back but with less acute pain. My life was salvaged after an other 10 years due to IV antibiotics for acute infections requiring surgeries I was on sick leave for about 3 years at work and had to to retire 3 years early. An other DX plus a positive IGENEX but not to CDC standards was obtained outside Canada. Now seven years of Oral ABX I am free from specific Bb symptoms. But I remain figthing Babesia symptoms with rather heavy holistic protocols.

  36. 2 years and three months )= and the only way I knew i had it was because of these lovely lyme forums, if i would have stuck with regular doctors I would have been sicker a lot longer. I took a WB test and had one lyme specific band 3 months after being bit, but i was considered negative according to mainstream doctors.

  37. My daughter’s symptoms presented with an eating disorder, panic, and knee pain while she was in her in her freshman year at college. Her quality of life has been been diminished since then. It was only the second half of her her junior year that we figured it out on our own. She had debilitating depression, anxiety, word recall, hormonal imbalance, hypothyroid, horrible insomnia, social withdrawal. She was an excellent student and very involved on campus. Although she saw Dr’s and therapists at her school, all they wanted to do was give her anti-depressants which made her feel worse. They had her convinced this was all in her head and she was doing it for attention. She was almost suicidal.Someone finally suggested to me Lyme and we had her tested immediately and although the test came back negative, The brain MRI showed lesions that could be consistent with chronic Lyme. Then we thought we could finally get help but unfortunately we found that the nightmare was only changing. She also tested positive through Igenex. Our Dr whom I truly loved basically dismissed us to an ID doc who said 3 weeks of Doxy is all they prescribe. Thankfully I found groups on facebook that have increased my knowledge tenfold and shortened my learning curve dramatically in learning how to help my daughter. She is improving greatly on Cowden Protocol, bio-identical hormones, armour thyroid, GF/SF/DF diet and major detoxing. I truly wonder though in looking back if she has had it a long time, maybe even born with it. I now want to have my sons tested too. There is hope but it is so hard to see when you are so sick and summarily dismissed by conventional medicine.

  38. It started with my husband, he didn’t feel good and no doctor could find what he had. We saw a reportage on TV on lyme in Quebec. My husband auto-diagnose himself after a lot of research. He wrote an e-mail to the association for the lyme in Florida to know if there was somebody who was treating lyme and we found a LLMD. I get tested after that because I was so tired and I have lyme, bartonnella and babesia. Know we are treated and feel a little bit better.

  39. My guess would be well over 30!!! i went undiagnosed/misdiagnosed for over 32 years. It could very well be much higher.

  40. 4 primary care doctors, 3 ENTs, 1 neurologist, 1 rheumatologist, 1 cardiologist

    It was a primary care physician who finally diagnosed me.

  41. Ha. I was diagnosed in 2007 my daughter 2009, had to get ugly and make her dr test her too when she got sick like me. They couldnt figure out what was wrong. I had to fight for DOXY hard for both of us. Tested her for cancer and everything under the sun here where she and I got it, in Arkansas. Finally a positive test for Lyme like me with antibody for Rocky Mountain Spotted Fever and Mono which were her co- infections. Mine was Bartonella. Babs and R.M.S.F. We’ve seen over 30 drs, 6 specialists, 3 internal, 3 infectious disease specialists at once, hospital many times too. They are scared to even write ‘Lyme’ in our medical files and why we take Doxy. The Infectious disease specialists in Little Rock lied and said its NOT in Arkansas!!! Sent me home to die. Had fluid on my lungs (edema). Hopitals and drs here (some know it is and are as discusted as we are) but most are ignorant and clueless and could care less. Thank God the hospital in Searcy knew about rmsf and Lyme somewhat and how to treat it. Both still badly sick though, my daughter has so many health problems now including a mutated dna gene. Need real LLMD’s in Arkansas like other states have. Only one there is booked solid not taken more patients at 500. I know hundreds with this in our area. Time for the Goverment,IDSA,etc to quit lying. We go through enough torture daily.

  42. Had the EM rashes as a child growing in New York state. Doc said it was ringworm. Had unnoticed petit mal seizures my entire childhood and teenage years; a grand mal at 18. Began feeling very sick with fevers, sweats, migrating pains in early 20s. EBV then CMV, hypothyroidism, etc. Saw numerous doctors for the next 15 years.. Blamed it on work stresses, CFS, fibromyalgia, then peri-menopause (which I have not begun yet). 2014 was the year I was diagnosed, sadly, after my 3 year old son had the rash(es) and we found an LLD who promptly and properly treated him. Last week my 12 year old was diagnosed via the Western Blot and his similar symptoms. Insurance has paid for very little and the laws and treatments need to be updated. So many of us have suffered and continue to suffer with this horrible infection and receive little, if ANY, assistance. The doctors are still unknowledgable and rarely consider it…and the tests are very unreliable, which doctors will base their opinions solely on. I am grateful my test (and my son’s test) actually showed the infections. I pray more information will be available to them during their lifetimes so they will not suffer for decades and spend their entire life savings on treatments.

  43. 7 years and at least 30 docs before a Lyme Literate Medical Doctor knew what to do and now things are much improved for me.. Most doctors know very little about the real Lyme disease they only know the one the read from the IDSA guidelines, it’s just my opinion but they don’t want Lyme being over diagnosed so they got doctors too scared to even touch Lyme with a ten foot pole.. The guidelines for Lyme disease flawed and outdated and need to be changed in the worse way but because of stubborn medical professionals they refuse to admit they are wrong about this Lyme epidemic in America ..

  44. 9 years living in horrific pain from head to toe. Feels like every bone in my body is broken while all my muscles are being ripped from my bones (ive had broken bones & torn ligaments & lyme pain is a million times worse) .My head pain is so severe I constantly vomit & cry & scream. Can’t walk properly. Can’t breath. In a constant state of asthma attack (which I suffered from as a child). chest hurts so badly that I feel like I’m in a constant state of a heart attack. You can’t think. You’re now dyslexic. You can’t talk. It hurts to use a pen. You cant eat any food as you are severly allergic & in constant pain even just from drinking water. You feel like you are dying every second of every day. You have over 100 severe symptoms & nobody cares. You lose your independence, your job, your family, your friends.. Life is excruciatingly painful while suffering such severe insomnia that you don’t get to sleep any of this horrific life away. I am the living dead. I wish someone would help me

    1. Your story sounds like mine. I cried reading your story. My heart n prayers r with you. I hope you get big help. Im praying for you. Xo

  45. Sick with Lyme for 31 years before being diagnosed. Presented with a bulls eye rash at about age 12. Shortly there after my knees had to be drained & I was diagnosed with housewives knee. I was 12! My knees dislocated unprovoked the next 10 years. Strep, mono, narcolepsy, horrific menstrual cycles, bouts with fatigue followed initial infection. The years following were filled with more of the same plus depression, anxiety, panic attacks, Epstein Barr, Chronic Fatigue, hypothyroidism, & chronic pain throughout my body, just to name a few. Working fulltime came to an end when the physical stress of a work week took it’s toll giving me injuries, & more pain on top of what I already had. All of this for a disease that’s ignored and many believe doesn’t exist. Now because of the work injury, the quality of my life is being ignored by yet another system. Deny, deny, deny. Department of Health, CDC, insurance companies, doctors & lawyers are not above the law and must be held accountable. I’ll not die without a fight.

  46. I live in TN. This is a tiny portion of my story. Had been very healthy & played sports all my life. Always worked hard, raised 3 kids & did everything in & out of the house.

    I started getting sick in 2000. I worked in the Executive Offices of the Saturn Corp. It started with getting getting very fatigued & sick feeling, migrated to pain, migraines, eye problems, swallowing problems, joint & muscle problems, stomach problems, respiratory, elevated BP’s, etc.

    I went to probably over 20 doctors literally crying & begging someone to help me. The only thing they could tell me was Fibromyalgia & major issues in my spine & neck.

    Eventually I became 90% bed bound & my neurological issues became very prominent. Couldn’t form sentences, hold conversations, hyper sensitive to light & sound.

    I remember asking my Doc to do a Lyme test in 2009 but she never said if she did or not. By 2012, I was on my deathbed. I became lethargic & slept for hours, sometimes days. My body became very swollen & the pain was absolutely unbearable. My Chiropractor knew something bad was wrong so suggested I see a colleague of hers.

    He requested all of my records before I got to him & he found my PCP actually did do a Lyme Titer in 2009 & it was positive. Thing is…her office FORGOT to tell me?

    My family sent me to a clinic for immediate IV therapy & further testing. Turns out I had Lyme, Rocky Mountain Spotted Fever, Bartonella, Babesia & Protomyxzoa. I also had active Epstein Barr, C. Pneumonia, & several active HHV6 viruses & my heavy metal levels were very high. I stayed in that treatment facility for 3 months & have been treating orally now for 1 1/2 years.

    I am

    1. They didnt forget to tell you, ors used that excuse too. Just know no better and told the tests are wrong when they arent. And scared of treating you. Had to flip out on my dr and the hospital to get my positive tests results 4months and a year later to get the actual blood tests in my hands to get help and over a year for hers. I thought.we’d get real help… your own advocate or die

  47. It took me almost 3 years, and over 20 doctors. I tested negative on at least 3 of the worthless ELISA tests. After researching on my own, I found that all ofy symptoms pointed towards Lyme disease. I found a LLMD, and tested CDC positive on the Western Blot. There is absolutely no sense in anyone suffering the way I have for the last several years. I have to travel 1200 miles round trip to seek treatment…. which isn’t covered by insurance. It’s time for the IDSA and the CDC to wake up!!

  48. I love exercise and two years ago, I was running 3 to 5 miles every couple of days, working at a career I loved, looking into adoption and living life to the fullest when I found a tick adhered to the back of my head. I went to the doctor and asked for Doxycycline. I live in a Lyme-endemic area (NY), so even by the CDC’s outdated guidelines, the doctor should’ve treated me. But Lyme has been played down so much that my doctor refused to give me the Doxy, instead choosing to test me. OF COURSE I came back negative because it had only been a few days since I’d pulled the tick off; there wasn’t enough time to produce the antibodies I needed to show a positive test. Why didn’t my doctor know that we needed at least 6 weeks before the antibodies would show up in my blood? Better yet, why didn’t he know that Lyme Disease is rampant in this area (as it is in so many areas of the country) and simply treat me as I’d asked? Was it because I didn’t have a bull’s-eye rash (maybe it was hidden under my hairline)? Was it because my joints didn’t yet ache? Perhaps if I’d gone in with some acne instead of a healthy fear of contracting Lyme Disease, I would’ve been granted the Doxycycline I so earnestly requested. But I didn’t have acne and I wasn’t smart enough to make up something that IS treated prophylactically. Instead I trusted my doctor, who I’m pretty sure trusted the CDC when it claimed there are only 30,000 new cases of Lyme per year.

    One year later, I was so sick I was bedridden. I’ve developed a heart murmur, my heart often burns, I get excruciating headaches, I can’t remember things, I have constant internal vibrating, neuropathy, dizzy spells and so many more symptoms. I no longer run. I no longer work. I’m no longer adopting a child. (So Lyme not only robbed me of my life but also robbed a child in need of a loving home.)

    When I was diagnosed with Lyme last year, I returned to the doctor who had refused me the Doxy the year before. Upon hearing that I have Lyme, he threw his hands up in the air and practically shouted, “I can’t help you with that! I can’t even discuss Lyme with you! They’ll come after my license!” The CDC has created so much fear for the doctors that they not only won’t treat but won’t even discuss Lyme with their patients.

    I recently called the handful of Lyme Literate MDs we have in this Lyme-endemic area for help. Richard Horowitz in NY is so overbooked that he stopped accepting new patients in November and already had a waiting list of more than 400 people a month ago. Please read that last line again and let it sink in: A waiting list of 400 people within only a few months of no longer accepting new patients. That is a SINGLE doctor. ONE MAN. The other LLMDs I’ve called are also not accepting new patients–they’re all too busy with the ones they’ve got. Even when these doctors can take new patients, though, they can’t take insurance, so unless you have a way of coming up with the tens of thousands of dollars it will cost to see them, you’re out of luck.

    What a hellish nightmare that the CDC and the IDSA have created for so many people, by outright lying about what is happening to people with tick-borne illnesses, by lying about who can get tick-borne illness, by tying the hands of the doctors who could potentially help us, by denying us the treatment and help we so desperately need. I want my life back, but don’t know if I’ll ever recover (it).

  49. I have had Lyme for 10 years, but was not diagnosed till 4 years ago. At the time I got the bite I had never heard of Lyme disease. If I had, I would have known right away and gotten treatment. I had all the warning signs. I developed the bullseye rash and flu like symptoms within 48 hours of the bite. Not knowing anything about Lyme I put these symptoms down to the delicate area that the tick was at. I have rather large breast and the tick was on the underside of my left breast. It had been there for 2 days before I realized it. I was bit in Tennessee while visiting my daughter and got the tick after 4 wheeling in the woods. Once I got home I was feeling very sick, and blamed it on the Airplane trip and breathing the recycled air. The rash stayed on my breast for almost a month before finally fading away. I went back to work and noticed that my energy level was very low and I just didn’t feel good. Then one day I had a Grand Mal Seizure and was sent to a neurologist for testing. The test were all negative, and he couldn’t figure out why I had this seizure out of the blue. I started having muscle aches all over my body, and my left hip and lower back started hurting me so bad. I went to several different physicians trying to figure out what was going on with me. I had been a very healthy 42 year old woman up till this time. After a year of various illnesses and fatigue I had to take a leave of absence from work. I could hardly walk up the stairs in my house. I was tested for everything under the sun and all the test would come back normal. I did however start showing signs of arthritis in my hip and this progressed very fast. I was sent to a rheumatologist who said that my hip looked like an 80 year old woman. He treated me with pain relievers and was baffled as to why I suddenly developed this arthritis. I continued to have all over body aches, fevers, and my mind was getting foggy. I couldn’t remember the names of my children some days. It was a very scary time for me and my family. I even had one dr. tell me that he thought it was all in my mind. As if I could make myself get arthritis. Finally I moved to a different county and I got a new Family Physician. He took one look at my huge chart and the first thing he asked me was if I had been bit by a tick. I told him that I had but it was 5 years ago. He then said he wanted to check me for Lyme. It was the first time I had ever heard the word or had anyone ask me about it. The test came back positive, and I was so relieved. I now had a name for what was wrong with me. I thought I could get a pill for it and I would be all better. He put me on several rounds of anti-biotics, but It did not help at all. He then explained that he didn’t know a whole lot about Lyme, but he did not think that giving me more antibiotics was going to help. I now have learned to live with this disease. I take pain medicine for the arthritis, I also take other medications for the nerve damage, and I take a medication to help me sleep. I have many weeks where I am too weak to get out of the house, but then I do have some good days. I try and live for those days. I only wish I had known about Lyme when I got it, Mother Nature tried and give me all the warning signs that I had it, but I didn’t have the information. I just hope that we can educate everyone on this disease. Not all will get the rash or even know they have been bit. But with more testing, and more education maybe we can help others not to have to go through what I have and still do. Lyme is a horrible disease. Education is key

  50. It took me over 45 years to get correctly diagnosed. I also went through many doctors while my immune system was pretty much shot and I was sick all the time. The doctors thought I was making it up, until they did tests to discover I really was having sinus infections that lasted a minimum of 6 weeks every fall and every spring.

  51. treating so called m.s since 2000 treating innear ear infection for 10 years before that got properly dx,ed with lyme 3 years ago i think that is what i had since 1990

  52. Took over a year for my daughter to be diagnosed. That was 8 years ago and she is still in treatment, but is more functional and less ill than even 2 years ago. Neurolyme, babesia and bartonella

  53. Six weeks. I developed encephalitis and meningitis, heart palpitations, and a relentless stiff neck. Couldn’t complete a sentence. And rage. Oh, the rage. Fortunately, I had the tick. Others are not so lucky.

  54. 25 doctors for my daughter and we are still searching for help. When her husband Paul tested positive on the western blot the Dr. told him that it didn’t mean he definitely had Lyme! My daughter was instructed to go to ER 3 weeks ago by 2 doctors she is currently seeing and they couldn’t get rid of us fast enough when we said she had Lyme. She was in a full blown seizure when we left and they didn’t try to stop us or help it. The ER Dr. told us to bring her stool sample in the next day because we wanted to ensure she did not have cdifficile. When I brought it back I waited for 40 min., 3 people approached me and said she has been discharged and they would not test her stool there. She has been bed ridden completely since Dec. 2013. She cannot walk, she can barely speak, her pain is horrendous, her vision is getting worse each day, she has seizures, we need to feed her at times and no one has helped her yet. We are desperate to find help for her but no one has the answer.

    1. Your experience attests to the same experience many have had, first you have to see an LLMD to get any real answers, otherwise you will get the run around. Second, you can start treating with naturals immediately. Start researching in all the Lyme groups and you will find many natural treatments, and they are effective. Many people who have taken antibiotics treatments for years, have eventually turned to natural treatments, and you don’t need a doc to start those. I would also take a good look at Gerson Therapy, as there have been some people with Lyme who have had tremendous improvement on Gerson Therapy. It’s a starting point. But you can also use many other things, liposomal Vit C made at home, or purchased at retail prices but making your own is cheaper and much higher dosage. Essential oils, look up Lyme Bullet and essential oils, and use Aura Cacia oils to make it yourself, and use a roll on applicator to make it easy. Much much more you can do, but I;m not a dr, just a fellow Lymie, so do your own research. You gotta take this bull by the horns, for real, and you can do it 🙂

    2. I had the same thing happen at 2 hospitals. They left me screaming in pain after I said I had Lyme disease. Totally traumatized my 7yr old all over again. Please friend me on Facebook I may hav info to help her seizures. She sounds very much like me. Hugs

  55. 16 years. It stole normal teen years and most of my 20s. I refused pain medication many times, and regretted that at other times. Doctors were more than will to give me pain medication but not even write my symptoms in a chart. I push myself constantly and could never reach what I know I should be able to.

  56. I have been sick for 7+yrs I’ve been diagnosed with Fibromyalgia and Chronic Fatigue, Depression and anxiety. I’ve seen about 10 Drs and still not diagnosed. Became sick shortly after moving to Arizona from Virginia. Our dog died mysteriously positive it was Lyme. Last Sept my daughter was diagnosed only because I insisted. Came back Highly Positive and no treatment available. Was told it was a past infection and sent out the door. We both can’t find Drs that take insurance to treat us. We need help desperately!!! We are fighting to stay alive.

    1. You might need to self treat! In the end, you will end up self treating for much of it anyways, and the burden is on you to do the treatments even if a dr prescribes, so you might as well find out all the natural treatments you can do until you can find an LLMD. Natural treatments are very effective, its just a matter of getting educated on them, but all the info is here on the web, in groups, etc.

  57. Speaking on behalf of my son he was diagnosed with hypothyroidism while in a psychiatric hospital that he was in for visual and auditory hallucinations and never spoke of why those were occurring. He had been sick years prior but the doctor never ever suggested Lyme. Wasn’t until his knee swelled up and he was unable to walk that the orthopedic tested the fluid in his knee for Lyme.

  58. 30 years. Infected in 1974 at age 18. Undiagnosed for 30 years. I did every treatment protocol out there for 10 years. Had about 4 “good years”.

    58 now , very sick again. Bedridden this time. Losing weight rapidly. Suffering is immense. No hope that another 10 years of trying yet again all the protocols out there will help.

  59. Bitten by the tick at age ten, Some problems in my teen and twenties, such as Hashimoto’s and arrhythmia, but at 31, pregnant. That caused the Lyme to really kick in, show all of the typical signs, aches, roaming joint pain, neuro problems, everything, EBV flared for 8 years, I was sick for 25 years after the pregnancy before diagnosed. The state I live in is a low Lyme state, but I was bitten on the east coast-repeatedly.

  60. 36 years. I started getting arthritis, a stiff neck, joint pain in my hips and back, leg pains, stomach pains, and allergies to things I’d never had allergies to previously when I was 10 years old. These were all ongoing issues. I had undiagnosed mononucleosis and extreme fatigue when I was 17; hives (allergy to celery) and kidney infection when I was 19, along with various digestive issues, allergies, hearing loss, vision loss, dizziness, memory loss, chest and nerve pain and other unexplained issues. I’ve had cardiac tests, lupus tests, thyroid tests, etc., and of course they always came back normal. I can’t count the number of doctors I’ve gone to. I was finally diagnosed with Lyme Disease on April 1, 2012 and it was reconfirmed by a second doctor on February 14, 2013. I never saw the tick or a bulls eye rash, and I could have only been bitten somewhere in Utah or Idaho.

  61. 22 years from when I got sick until I was diagnosed. All the chiropractor treatments and antibiotics for bronchitis, tooth aches, sinus infections, etc in those years is unreal.

  62. Most likely, was either born with it or got it as a young child….IN FLORIDA!!! Have two sisters that tested positive as well and none of us has ever lived outside of FL!
    I was diagnosed with numerous other “syndromes/diseases”, but it wasn’t until after taking 6 weeks of cortisone following ear surgery, that my immune system cratered and I began having joint pain, extreme fatigue and finally broke out in a rash. I asked my doc to run several tests…she complied and bingo, came back with a “CDC positive” test for Lyme!

  63. 40 years …my kids were diagnosed, our LLND started piecing things together and decided the kids were congenital. I was constantly sick and in pain as a kid and docs just blew it off.

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