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

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

online poll by Opinion Stage

Please add your comment in section below.

  • 10
  •  Too many to count! 7 negative tests before positive through igenex.
  •  mine is your first and probably ony disappointment… 1
    Alexis’s whole life, so I’d say 20
  • Hard to answer this one since I was diagnosed till I as 30… Who knows how many docs I saw as a kid…
  • 5 doctors, 17 appts
  • 14, almost a year
  • At least 6 maybe more
  • 5
  • After 22 yrs. Undiagnosed and I wasn’t keeping track, so I can’t really say but a guess would be 15.
  • Years of doctors, I’m thinking around 10 ish Including Infectious disease neurologist GPs walk in clinics oh God okay the list goes on…….. Santa Barbara specialty hospital many doctors there probably over 10 that’s okay we’ll just say 10
  • Probably in the 15-20 range.
  •  15-20 range
  • My whole life… I’d guesstimate around 40
  • 10 including 1 that I saw about 6x with more and more symptoms she never connected the dots : (
  • 25 in 3 years
  • I had to figure it out with the computer and literally 2 fingers left working and then tell my fill in family dr after 10 drs and 25 appointments at least, 5 months.The walk in dr came close,asked me if I had been bit by a bug ,but at the time I couldn’t remember that and was having trouble walking so I wasn’t thinking about bites.
  • First time one, then cured  The second time about 32.
  •  Over 20 yrs.
  • like Jeannie, the first time just one, got better after doxy. the second time I have seen 33 doc. my wallet is empty and im still in bed and tired all the time. he now says that I don’t have lyme anymore but cfs. what the heck??
  •  No joking, I cant even count….i’d have to actually sit down and write them all down and recount my memory over the last 20 yrs…..I can tell you its at least 25
  • At least 7 but that doesn’t count all the specialists like neurologists etc.
  • over 20
  • 8 over 4+ years…and the final doctor to give us the lyme diagnosis based on symptoms was our veterinarian! We followed up on that with a lyme doc who was pitiful, and finally our wonderful LLMD that we currently use.
  • 10+ cant remember but would have been more. I figured it out and had to insist on testing. Took 3 yrs of horrible pain, seizures, black outs, numbness, fatigue and migraines. Infectious disease and neuro. are the worst that wont listen and arrogant. Then after figuring out, been to probably around ten more until I found one that has a clue how to help even knowing whats wrong. Disgusting.
  • One internal medicine doc. One rheumatologist. One neurologist. And too many ER doctors to count! At that point, I gave up on doctors altogether and turned to the internet. I felt I was dying. I knew it was up to me to save my own life. Finally, through much internet research, I discovered Lyme. I thought my symptoms fit to a T. After that, I found a LLMD and had my diagnosis confirmed. I have had Lyme and co-infections for over 25 years and wasn’t diagnosed until 2008, 23 years after becoming infected.
  • 22 in two years, then I moved, and havent found one yet.
  • I was lucky I saw 8 before LLMD
  • Five
  • About fifteen to twenty and about eight years
  • About 10, but including specialists probably 14.
  •  Over 30. Mostly specialists.
  • 20+
  •  1
  • 1 but was symptomatic a year first.
  • 5 plus
  • 13+
  • I diagnosed myself using the Internet. Luckily the diagnosis got confirmed by my doctor because his assistant misinterpreted the negative test result. My second doctor already was a specialist.
  • over 30
  • 15+
  • Second one treated me for it but was just a gp and is still treatibg me for pain and others. Confirmation came from two more llmds.
  • Over 30
  • 20+ years. 16 for my two girls……
  • 30 ish
  •  20+
  • 7 or 8. No where near most.
  • 65
  • 30+
  • 5
  • 14
  • 5
  • 15+
  • honestly
  • 14
  • I honestly don’t know. probably around 25 in 18 yrs of searching. The thing is, I went to the same DO for 15 of those years and I probably saw him over 100 times just treating sx cause he never thought to test for lyme. So asking how many Drs we’ve seen doesn’t really answer encompass what most of us have dealt with in terms of getting answer from drs. does that even make sense? lol
  •  8
  • 4.
  •  7 idiots!
  • 5
  •  39
  •  100 + *sigh*. Why did I end up getting most of the jerks?
  • 7
  • I can’t count that high anymore!
  • It is still happening too. Yes, I know I have Lyme and am being treated for it but there is damage that has been done to my body that needs surgery to fix. I have seen at least a dozen docs in the last 4 years trying to get that issue fixed. They just don’t get it!
  •  2, because i when i saw a bullseye rash on my arm, my husband said “you have lyme disease!” and i went to my PCP, who of course, said its not. So i looked for an LLMD.
  • 12.
  • Gazillions.
  • over 20
  • 26 years
  • It took me 11 doctors and 10 years before they finally diagnosed me. Infectious disease doctor refused to believe diagnosis and only did 30 day PICC line. Doctor that diagnosed me advised ” well that is that, now we just treat the symptoms as they come”. I have now had lyme for 13-15 years now.
  • 10
  • About 15 it was an eye surgeon who actually figured it out
  • 30+
  •  5

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

  1. 7 doctors plus two trips to Mayo and no mention of Lyme. It took a new neighbor to urge me to get our PCP to test. My son lost over three years so far of his teen years. Hoping to get into remission by age 20.

  2. I possibly had it since I was born but the doctor that finally diagnosed me with and I Genex laboratory test that came out CDC positive at the age of 52 , he said I’d had it since the seizure at age 5 when I went in the hospital with that seizure they couldn’t figure it out… But I was told that I had fainting problems as a one-year-old and I think that probably is a symptom is well misdiagnosed too many doctors over the years many many many!

    1. Wow Carol, that is how my kids presented when they were young too! Two of them suddenly started having seizures. They were never officially diagnosed but Im sure that is what it was.

  3. It took 3 different doctors. One laughed at me, one told me “I didn’t know what I was talking about”. That last one saw someone else just like me. I didn’t have the bulls eye rash, mine was a general body rash that would move around and ITCHED. I just took my husband in this morning…waiting for results.

  4. It took well over 15 doctors…and some of them looked me straight in the eyes, and sternly said, “There is NO such thing as Chronic Lyme”, and “You just need to breathe in a paper bag!”, and, “There is no Lyme in Texas/Kansas”, and “You are suffering from postpartum depression and psychosis”

    I wish I could punch them in the face. This disease stole my life, and my children’s health.

  5. My daughter had the fowing for her medical team for over 15 doagnosis: ( 3 ) pediatric cardiologists (2) cardiac surgeons,, pulmonologist, (2) neurologist, a neuropsych, 2 osteopaths, a headache specialist, physiatrist, 2 orthopedic, pediatric rheumatologist, adult rheumatologist, psychologist. She had mutiple organ involvent, connective tissue disorders, congestive heart, early onset Alzheimer’s ( age 9) seizures, severe joint pain. She was THE ONLY person of our extended family (of grand parents great granparents and all thier children and there childrens children)to have multiple genetic disorders and immune complex disorders. Once she was properly diagnosed at age 14, her body began to heal. She was treated for 7 years with multiple antibiotics including IV antibiotics and has resolved ALL her issues except pain. It took her 8 years and over 15 specialists and misdiagnosis before she was diagnosed and began effective treatment. I was diagnosed with MS , hashimoto thyroid and arthritis at age 27 and was Diagnosed at age 41 when my daughter saw her Lyme specialist in Connecticut. All medical records are available for my daughters story

  6. Finally it took about 24 years to get diagnosed with Lyme/Bartonella. It defenitely flared up during my first pregnancy and low and behold…, my son was born with Lyme and finally got his diagnosis last year after being diagnosed with ADHD and Autisme Spectrum Disorder. The first ten years of my disease I had this awfull migraines two times a week, then I had a CVA (Cerebral Vasculair Accident) and my symptoms got worse and worse. I fell in the hands a psychiatrist and was diagnosed with CFS and Fibromyalgia. For one year I went through Cognitive Behavioral Therapy and Gradual Excercise Therapy. It left me complete disabled. I was told it was all in my head and I would be fine if I pushed myself a little bit more each time. Ten years later I finally was bedridden. I knew then that I needed helI. Desperately! I went to prof. De Meirleir in Brussels and he tested me for al sorts of virusses and bacteria. My Bartonella pcr was positive and Lyme skyhigh. Now I’m being treated the right way I feel improvement. I lost so many beautiful years of my life. I couldn’t be the mother I wanted to be. It feels like the medical negliment has stolen my life. I could never engage myself in a relationship, could never build a career (although I have a degree), could never have a social life, couldn’t go skiing, no citytrips, always alone in your bed, in your room. I will never get my life back. Now I only wish that there will be a future for my son who is ill. Please spare him the neglect!

  7. I knew where, Oklahoma, when 2007, and what bite me, fleas. It took 5 doctors in a 5 month period before a doctor even mentioned Lyme. I had 3 Western Blot and Elisa tests in the first 5 months and all were negative. In 2009, I paid an out of pocket expense of $1300 for testing with IGenex. IGenex results were positive with Lyme and a co-infection of Babesiosis.
    We now know insects who take a blood meal can transmit Lyme. It isn’t just about tick bites.

  8. I have Lyme for 25 years now and Im very sick for more then 13 years. They though I had Me, Cvs, Fybromyalgy, allergies and more. Last year they found the Late stage Lyme desease and co infections. Ive seen so many doctors but they all didnt know what was wrong with me because they did not have the right tests.

  9. It took about 8 doctors to get correctly diagnosed with Lyme Disease & co-infections (Bartonella, C.Pneumoniae). I was misdagnosed with CFS/ME for 9 years, 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.

  10. 5 doctors and 3 Consultants – despite attending surgery with bites and bulls eye rashes flu like illness and joint pain ten years of chronic pain and muscle weakness that resulted in being retired on ill health grounds – I was unaware of the link to possible Lyme Disease as was the doctor I showed them too.

  11. It took about 35 drs that told me I was fine befour I figured it out yes I did I demanded the Lyme test the dr wasent even going to do the test until I got upset all my test were positive and high but they still said it’s not lyme because it’s not in Idaho

  12. It was between 15-20 doctors it I count all the ER visits, it could have been more and 14 yrs would go by before I heard you have lyme decease.

  13. I am 52 years old and just got officially diagnosed in March of 2014. I have been sick my whole life and no one knew what was wrong with me. I was diagnosed with Fibro, CFS, Arthritis, Degenerative disc disease, Chiari Malformation I, diabetes, HBP, lost my gall bladder.
    I am learning now that I was given this wonderful, destructive disease when I was being carried in my mother’s womb. She was sick my whole life and no one knew why either. My father died of “Parkinson’s disease” and I know it was Lyme. He had all my symptoms.
    I now have passed it on to my children. My 13 year old son has all the infections and co infections that I have. My 17 years old daughter has not been tested yet and my husband has not been tested yet either. I see signs in both of them.
    When is someone going to do something to stop this?
    I think newborn babies should be tested.
    I think pregnant women should be tested.

    So, yes, it took me 52 years to get diagnosed with more than 20 or 30 doctors. I lost count.

  14. It must be stressed that there are lyme patients in every state. Most of them did not travel to another state to get it.

  15. I went to the emergency room and drs. offce for reasons ranging from possible stroke , heart attack, severe chest pains, bronchitis,flu. All in a year and one half.
    It took probably 20 visits to different medical outlets. Misdiagnosed by my primary.Two test and two times
    times she said no lyme.Test negative. I had always been very healthy . I knew I had something terribly wrong. I ask my pharmacist who told me of a friend who had lyme and he got that drs. name for me
    He was lyme literate and DIAGNOSED me finally. But it took me three months to get into him.. So of course my health continued to deteriorate. This is the most cruel disease it robs you of everything and everyone therefore your life. Please help wake up the world we are all at risk! You, your children,your entire family.!!!

  16. It took me 13 doctors before I finally found out I had Lyme. And I would of seen a lot more but someone my mom worked with had it and told my mom to have me tested for it. Sure enough I had Lyme and it was caught just in time as every organ was failing.

  17. 5 Drs and 10 years undiagnosed & It took me going to a Dr. out of pocket to get diagnosis, test kept coming back negative. Didn’t get a positive test until on antibiotics after 4 weeks. So if the Dr. Didn’t believe my symptoms and start treatment not sure if I would be getting some relief from pain, brain fog, noise issues etc….

  18. 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.

  19. I voted on 10 but I lost track. I was cdc positive first quest test. My problem was no doctor recognized the signs which is sad as mine should have been an easy case.

  20. over 10 years of ‘mis’diagnosis or UN diagnosis…4 or 5 negative lyme “titers” however that is spelled…a trip to an ortho that said I just needed to scale down my activity and rest more “there was nothing he could do for me” – um…I was 41 and had 4 little kids- NOT going to happen … A referral to another surgeon to hack at my knee… lots and lots of $ spent out of pocket (ranging from $25,000 to 15,000 a year)…my only relief was going to cranial sacral therapy, reiki, polarity, lymphatic drainage massage, reflexology, homeopathic nutritionist and chiropractic work 3x’s a week EVERY week for a year! A nurse practitioner was the beautifully bright woman that finally shed some light on “it might be Lyme that you have been battling all these years”. My blood was sent out o Igenix and came back positive…it has so far been a 4 year climb and still climbing out of the Lyme hole!!!!!! AND NO THANKS TO CONVENTIONAL MEDICINE. THEY MAY THINK THEY ARE SMART AND ALL HARVARD TRAINED BUT THEY KNOW NOTHING!!!!!! NOTHING!!!! AND HAVE NOTHING IN THEIR BAG OF TRICKS TO HELP YOU. If they can’t give you a pill or send you to a surgeon…there is NOTHING they can do!!!! Sorry I get pissed every time I think of what I have been through and still going through. No more Lyme BUT still have weakness in circulatory system, painful feet and weak knees and leg muscles. Aloha…hope this info wakes a few people up….maybe they need someone in charge who is living through Lyme!!!!!!!!!!!!!

  21. And more than ten costly scans. I would guess 12 to 15. Not counting the numerous forms of X rays

  22. I saw two sports med docs initially (one said I had triceps tendonitis, the other said I had a neck injury), several physical therapists, then my GYN (who told me it was pointless to run blood tests on me when I said that I think I have a hormone problem), then an Integrative Medicine doc who said I was in great health, then a chiropractor, then a functional diagnostic nutritionist (who put me on a super low carb diet that I think disrupted my thyroid), then another Integrative Medicine doc who specialized in women’s health, then finally my current doc, who is a self-pay DO/ND. If I need to, I will go on to a LLMD, but only if my doc and I run out of options.

  23. it took me 2 ana half years to be properly diagnosed. I went through three primary care physicians , two teams of neurologists, 14 specialist including infectious disease doctors from 2 different counties. I was hospitalized 6 times in one year

  24. I wish it had only taken 10 docs. I have lost track of how many I have seen since the mid 80’s when I started having strange symptoms. By the mid 90’s I was hit with extreme symptomology that kept me in bed for years. It was many years later that a woman in the grocery store that told me about Lyme and that led to a diagnosis. Imagine all those doctors missing these infections but a casual conversation over supplements led me to figure it out!

    I had been told “they had tested me for everything and I was fine”! Fortunately I kept all my test results and I had NEVER been tested for any of the tick borne infections even though I was an avid gardener. I got Lyme in my garden!

    Wait it gets worse! I keep getting reinfected in my garden and I have moved to different areas of the province several times. Yet, our docs are still clueless here in BC, Canada.

    1. 🙁 may garden is the culprit too…that and dog walking. so sorry…we seem to have had the same kind of bozos for doctors. I am near Boston Ma

  25. 39 doctors.
    What Lyme Disease has done for me DiveGirl Deb;
    I have been sick 30-years with Fibromyalgia, fatigue, brain fog, depression, neurological issues & intractable pain since a work-related injury in 1987. I was diagnosed with FMS in ’91. Chronic pain for 17-years now. I feel like my body is turning into stone. I call it Walking Rigor Mortise. I’ve had 39 doctors and 63 pharmaceuticals to mask my symptoms.
    Many made me sicker, all certainly poorer.

    I got no test for Lyme Disease from my doctors. It’s only a $260 test. How do I save my life now? How do I kill these bugs, virus & bacteria inside of my body?
    I want to work – I have goals, projects & family. I want to spend time off the sofa wasting away and experience the outdoors, people and our ocean again. My treatment is expected to take years.
    I want my life back. I want to be healthy, happy & pain free again.
    I never want anyone else to endure what I’ve been thru. Pay it forward. Please learn about Lyme Disease, get tested and tell a friend.
    It’s time for Lyme Disease Awareness in Eugene.

  26. It took at least ten doctors, 14 hospitalization before a diagnosis. Sadly, it would still take that today.

  27. I first became ill when I was 15. It took 3 years and close to 35 doctors (most of them were seen at Rochester MN Mayo Clinic!!!) before someone was willing to try treating me for Lyme. I won’t even begin to list all of the incorrect diagnosis I received. Of course I never tested positive for Lyme as the tests, then and NOW, are still 50% inaccurate. Finally, we found a family dr in a small clinic in Red Wing MN. He didn’t specialize in Lyme but was willing to have compassion and try to help me out. This was back in 1993. I responded immediately in a positive way to the IV Rocephin. It took me 3 years of pulsed and combo treatment (iv and other) to go into “remission”. I was then very sick on and off through my 20’s. In 2003, after reoccurring strep throat for a year, I had a tonsillectomy. The next month I became too ill to work again. I had to go through the process of finding a dr to help me, as I was certain it was Lyme brought on from the stress of my surgery. A new strain or the old ones, hard to tell. But again, it took so long to find a dr to help me and so much money. This time around it took one year, a misdiagnosis of MS, Chronic Fatigue Syndrome, Raynauds Syndrome, Arthritis, and Fibromyaglia from 10 different doctors and flying out of state to MO to find a LLMD. I’m still unable to work and still being treated for Lyme, I have come to the conclusion I will always be sick and I will never be able to have children or go back to teaching but I hope to regain some of my quality of life along the way. Please help us stop this from happening to others. Change how things work. Increase education of the community and the medical community. Change the testing. Change the treatments. Allow us doctors who can treat free from censure and legal harassment. We desperately need change.

  28. For my 17 year old – 6 doctors on two continents but it would have been more If I didn’t already know of an integrative doctor to take her to. We went there after the other doctors (specialists) couldn’t find anything and declared that she was 17 and stressed (ie all in her head)! She had Lyme, Babesia, Rocky mountain spotted fever, mycoplasma and some residual viruses and was trying to do school exams. No wonder she was stressed!

  29. More than 6 years of continuous effort on my part to get the NHS to get me an adequate diagnosis and treatment , and still nothing!!!

  30. After being seen by many defferent specialist, I finally was asked by my GYN at the time if I had gotten bit by a tick. That is how I found out I had Lyme.

  31. I went to 8 doctors after KNOWING I had a tick bite and was sick from it. I was nursing an infant at the time and she became ill as well. I was told it was obvious we were sick, but Lyme did not exist in the South. By the time someone tried to help it was a year later and too late. Now it has been 15 years of hell and I have a VERY sick 16 year old.

  32. My first symptoms I remember was in my teens, which included electric chock sensations in knee and neck. My first Canadian Lyme Elisa test given to me that I remember was in my early 30’s when I noticed more strange symptoms, and I was negative. I had no idea what Lyme really was. At the age of 36 I started hearing more about Lyme disease and begged my Canadian doctors for a western blot and was refused. I had no choice but to seek help in the USA and was diagnosed by a Lyme literate doctor. My Canadian doctors are not educated on Lyme disease and are disciplined by their college if they diagnose without a blood positive test.

  33. It is believed that I’ve had lyme for decades. Started searching for dr to diagnose me 10 years ago.
    18 doctors (17 failed to diagnose me with chronic lyme…instead I rcvd lupus, fibromyalgia, adrenal fatigue and all- in -my -head diagnosis’…
    Praise the Lord 1 dr. found it but only because I demanded Igenix testing, (she didn’t want to do it) : ( otherwise I’d still be searching.
    For the wide range of symptoms I have seen
    Gen. Practioners, Gynecologists, Otolaryngologist, Dermatologists, Endocrinologist, Opthamologist, Psychotherapist (actually did more than any of the others because it helped to heal some things that were broken deep within : ), Chiropractor, Internist, Rheumatolgist, Neurologist, Homeopathic, SE Technician for Pain mgmt. and Alternative Med. Dr.
    My children have lyme, believed by dr. that they were born with it.
    On my way to Dr.# 19 today…Lyme Literate Specialist.

  34. 2…the first one said he KNEW it was a shingles rash… the only reason it was only 2 was because I took a picture of my wierd rash to the second doctor (4 mths. Later) who was thumbing through her “rash” photo medical book and comparing my photo with other rashes. She said “it doesn’t look like a bullseye, but let’s test you for lyme anyway)

  35. Half dozen visits to 2 Primary cares who told me I was fine, so did a 2 cardiologists, an NP, then an endocrinologist who told me I was stressed and wanted to give me Xanax. Along the way an acupuncturist/ND told me he thought I had Lyme but I didnt listen because I had 4 negative Western blots. Finally went to an ILADS trained integrative GP who diagnosed me in less than an hour, confirmed CDC postive a few weeks later with Igenex labs. Since then I have had a neurologist and an ID doctor both believe and treat me for Lyme since I finally had the “proof” with labwork. Of course I am now paying out of pocket for treatment since insurance wont cover past 28 days. I wound up with late stage Lyme and am still ill 5 months into treatment, because I was not properly diagnosed by docotrs or the insurance approved test when I was frst symptomatic.

  36. It took 12 doctors and over 19 years to get a proper diagnosis, even though I thought immediately that it was Lyme. They even sent me to a psychiatrist who said I was simply sleep deprived and that my Lyme Doctor was quacky and was brain washing me into believing I had Chronic Lyme which he says does not even exist. I’ve met with hostility, been treated like a child. My insurance company is refusing to pay. Things must change. People are dying. An early diagnosis (even clinical) can make the difference between life and death. PLEASE HELP.

  37. It took about 15 doctors to get diagnosed with Lyme Disease. By that time, it was 2 years that I had it and it had already disseminated to my brain and nervous system.

  38. It took about 15 doctors to get diagnosed with Lyme Disease. By that time, it was 2 years that I had it and it had already disseminated to my brain and nervous system.

  39. I was 12 years old when I presented with a rash after a tick was removed. I suffered severe headaches for more than 2 weeks. With flu like symptoms. Missed a month of school. Went to my doctor and he told me I had the measles which I had already had. I have been sick ever since then. I am now 53 years old and have seen more than 200 doctors. I have been diagnosed with so many diseases. No one person can possible have all the diseases I have been diagnosed with. Preposterous. We have lost our home due to all the medical expenses we have concurred trying to find the correct diagnosis. Which we finally got in 2011. Which really amounts to nothing to me as there is no way to effectively treat it or affordability to treat it. I just know the remainder of my life will be daily suffering until the CDC recognizes the fact that late stage lyme exists so we can possibly get the treatment we deserve and need. Also to find a reliable testing to prevent others from having to go through what the rest of us have had to endure. Educate doctors.

  40. Too many to count considering that it took 22+ years to get diagnosed. I remember getting ill.

  41. around 20 doctors, 3 hospitals and a dermatological clinic, no one knew, I had over 46 symptoms during my 4 year span, a doctor took my list of symptoms, conferred with other doctors and had a name of a doctor beside each symptom???? I have had unwarranted testing performed on me, unnecessary medications introduced into my body that I should have never had been given, which has only caused me more harm in the end! Constantly was being poked, prodded and sent to psychologists claiming I was sick in the head, the medical community put my husband and my children through HELL over this! Not to mention thousands of dollars wasted, times that I will never get back, friendships lost. If you want to know my story I suggest you check out my book I wrote called Ticked Off, and read this for yourself, learn about Lyme disease and co-infections……

  42. 8 or so! So many specialists at “the best hospital” Children’s Hospital Boston. Thousands upon thousands of dollars worth of tests

  43. 15+ doctors and finally through research of my own that I pleaded with my GP to do a test through Igenex and bingo after 14 years of disability I got my dx..of lyme disease. Now its chronic and the treatment I can get and afford isn’t working.. No one knows till they have chronic lyme just how horrible it changes your life.

  44. From age 40 something on it was at least 12 Doctors Specialists and Infectious Disease Doctors until a Neurologist ran Western Blot and it was positive.
    Growing up from age 12 on I had all the symptoms and saw many Doctors and Specialists with no real diagnosis other than juvenile arthritis, chondromalacia of the patella, toxoplasmosis in the eye, chronic bronchitis, migraines and depression at age 15 due to daily pain and air hunger experienced. I had to quit all the sports programs I was involved in at that time.
    I believe with all the rounds of antibiotics I was on from being sick all the time as a child it kept things at bay and cleared most all of the symptoms for many years until I re-infected later in life when things got much worse with Bell’s Palsy, Seizures, and Neurological CNS Lyme.

  45. To many! I’ve been sick since 1993! I’ve seen doctors from every specialty, I was tested for Lyme four times (3 Elisa’s and 1 spinal tap, never a western blot). After losing the ability to control my gross muscle movements I was told there was nothing wrong. It was a friend who told me to see a Lyme litterate doctor. Western blot from Igenex came back CDC positive…..go figure

  46. I live in South Africa. It took seeing 30+ doctors and specialists before I was diagnosed with a positive Lyme test in 2010. I had diagnosed myself in 1996 after battling with my health since 1970. My GP did believe me and I received no proper treatment until 2010.

  47. one…….I was lucky enough to have a giant bulls-eye,9 years to have an LLMD diagnose the Bartonella……..despite being seen and treated by the CDC twice with a PICC line…….co-infections were not discussed thus Bart just went around my body for 9 years and did a great deal of damage

  48. I diagnosed myself after about 10 others could not. Have seen at least 25 doctors, naturopaths, and other medical and health professionals since 2009.

  49. It took a dozen or more. Multiple Neurologists, Internists, Rheumatologists, an Epileptologist, cardiology doctors too! Then finally pioneering Lyme researcher: Dr. Edwin Masters of Cape Girardeau, Missouri became my salvation. Later other Lyme Literate physicians helped me.

    Lyme and related Coinfections are extremely difficult to endure and to secure diagnosis, treatment and last hurdle is Insurance companies who benefit by denying it. People infected by ticks are up creeks without paddles…and that is no exaggeration. Currently, even very wealthy people end up paying enormous fees (often out of pocket) with no guarantee of remissions. My husband and family are tapped out by the enormous costs of my illness….over decades. I pray for treatment centers in every major city. Lyme quality if life is very low. Hard to quantify, but I was sidelined by the disease and had to abandon many aspirations and career dreams.
    We with Lyme would like to not live in daily excruciating pain. Please somebody out there with the blessing of wealth….help us. TY

  50. I am unable to say exactly how many but if CNN wants to look at all my medical records for the past 14 years, I’D BE HAPPY TO SIGN A RELEASE to get an accurate count. Considering all the many, many specialists I was sent to, including Infectious Disease who DID initially dx Lyme with hig antibodies, but retracted based on a negative western blot, after this…dozens. Plus many ER docs. My own doc wont discuss. Its like a gag order has been enlisted at our hmo. They know they missed the boat and wont discuss. Now they just keep sending out and push drugs. Wont acknowledge the out of network dx by TWO licensed MDs. Question? Who stands to win most by continuing the status quo of Lyme dx and treatment or lack thereof? Who fails to list Lyme as factors in death? Who cares SO little and turns you away from treatment options? Who diagnoses dozens of mental illnesses without ANY physical markers, often after one visit but WONT or CANT clinically dx Lyme with its many easily “visible” and documeWnted physical AND mental symptoms? WHO

  51. I think I counted 36 doctors? bulls eye-rash in 1989 when I was 14, with a diagnosis of lyme and 10 days of doxy. Slow moving symptoms from then on. Many years later when I came down with neurological symptoms in my mid-20’s I asked the same MD over and over, could this be lyme? he said no, but diagnosed me with fibro, and then “wanted to diagnose me with MS”. Finally I found an MD that understood and said I probably still had lyme! That was in 2006. Still treating and finally seeing the light.

    Prayers to all those suffering, that they find light on their path, and they can continually release the pain and suffering along the road of treatment to get to the other side stronger than ever in EVERY single way!

  52. Being ill for 31 years before diagnosis makes it impossible for me to say with any accuracy how many doctors I’ve seen especially since they, nor I, had a clue what was wrong with me. However in 1998 I self diagnosed hypothyroidism. It took two years to find a doctor that concurred because tests would show “I was just a little low” and therefore my symptoms were ignored. Finally, after a three hour intake, a doctor agreed that I had hypothyroidism but he wanted to test for Lyme Disease as well, thinking it was the source of the thyroid issue. He was correct. I started antibiotic treatment but unfortunately they were of little effect.

  53. 2. First doc removed the embedded tick head, six weeks later his partner diagnosed me. Original doc was on vacation. Napa Valley, California. 1992.

  54. My son saw at least 5 or 6 doctors who said it was nothing more than a rough spell and I was being paranoid. Meanwhile, my son spent hours screaming and out of his mind from pain, fevers, hallucinations, tonsils so swollen he couldn’t breathe, and a failing immune system. His life was saved when I gave up and took him to an ND.

    1. Edit: since then we can add 2 pediatricians and a pediatric rheumatologist from our children’s hospital. They said he needed a psychiatrist more than an MD.

  55. It took 11 doctors until I was diagnosed. The third to the last doc was a rheumatologist who told me I needed physical therapy for my aching joints. I couldn’t even get out of bed to drive to the appts, let alone take care of my young kids. He walked me out of his office and told me there was nothing more he could do for me. It made me feel very hopeless. Thank goodness I started educating myself on Lyme disease and learned who the scientists and doctors who have really delved deep into this epidemic and want to help people who have become infected.

  56. It took more then 20 doctors and 31 years. I have also probably passed this congenitally to my two daughters. It has taken all of my savings, my home, my job, to try to treat this insideous disease and it’s coinfections. My doctors new nothing of the symptoms during those 31 years and now some are trying to learn and some completely ignore the science and facts.

  57. Took way to long, I hope and pray that we the Lyme community can open the doors so that new cases can be diagnosed and treated. ASAP!!

  58. It took over fifteen years and more than twenty five specialists over the years to finally find a doctor who told me about Lyme disease and it’s symptoms. The doctor who ended up telling me was my gynocologist and the only reason he knew about Lyme was because he had been fighting it for the past four years. He almost gave up his practice because of how sick he became.

  59. 8 years and at least 30 doctors including the 5 condesending specialists at Mayo clinic. It seems they were just sharing the wealth… And I can’t tell you how much I appreciate the LLMD that saved my life.

  60. Too many. Started with PT, went to 3 neurologists, cardiologist, pulmonary specialist, rheumatologist, (of course, PCP) gynecologist and finally a Physical Medicine specialist diagnosed me.
    Been in and out of treatment since 2005.

  61. I first started going down hill in the early 1980’s and by the mid 90’s I crashed big and spent years in bed. During this entire time I went from doctor to doctor, had numerous tests and ended up finally diagnosed with “It’s all in your head” syndrome. After that I gave up trying to get a real diagnosis. I was finally diagnosed in 2004 by a woman in the grocery store. I lost count how many docs I have seen!

  62. Living in South Africa, it took me about 30 years and 30+ specialists to eventually get a diagnosis in February 2010. This despite me telling my GP in 1996 I was 100% sure I had Lyme disease from doing my own research… so another 15 years went by before I was diagnosed and had my first proper treatment for what was really wrong with me. It was a chance meeting with someone in January 2010 which led me to finding my LLMD.

  63. Took 8 doctors. First 7 seemed scared of me and the long list of symptoms. None of them did any labs. It was only the 8th, who seemed to know – took lots of blood for labs, then told me before I left his office he suspected Lyme!! Bless you Doc. #8.

  64. The first doctor thought I had Lyme…. but he ruled it out because my first blood test came back negative…. so did the second one…. After going to 3 different doctors… the 3rd blood test came back positive for Lyme… This doctor gave me the standard 30 days of Doxy…. but it did me no good…. I felt horrible…. This doc later told me that I just needed to pick myself up and go on with life… he thought I was faking my symptoms…. it’s just sick…

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