It wasn’t heart disease – but what was it?

by Carolyn Thomas  @HeartSisters

Her medical nightmare started during the summer of 2008 when she was just 39 and began having terrifying heart attack symptoms.  It took well over two years for this mother of three from upstate New York to finally hear a correct diagnosis. Put on your diagnostician’s cap today and consider the chilling account of her experience, told in her own words over five months.

October 19, 2010:

“For most people, the answer is clear-cut, and measures can be taken to correct the problem. But no, not for me. A once-cheerful happy Mom of three, I’m now reduced to an anxious, uptight, confused person since no doctor can figure out why I’ve had this chest pain, burning upper back pain, severe anxiety, dizziness, headaches, joint pain, and a racing heart rate for over two years.  All enough to make me look like a crazy person.

“So far, doctors have diagnosed my problem as possibly IST (Inappropriate Sinus Tachycardia, a rapid heart rate condition).   Or costochondritis (inflammation of the chest cartilage). Panic disorder.  . Fibromyalgia. . Lupus.   Nut case…

“Perhaps the answer lies in my GI tract, since blood was found in my stool sample. I am just so sick of testing and waiting and more anxiety – and still not a clue. Who wants to live like this? I never in a million years figured I’d end up in such despair, with symptoms that no one can figure out. What a nightmare. I feel like a train wreck.”

October 20, 2010:

“I am so depressed. I somehow have to get up the strength to get through this. I am very scared. So hard to stay strong when all you want to do is just cry! I feel miserable. Got back from the GI doc and he has ordered a colonoscopy and endoscopy. Lovely…”

November 1, 2010:

“I am in such a bad place. I don’t see a point to anything anymore. I am sick of this chest and upper back pain, racing heart rate, and dizziness. I am told it’s not my heart. Nothing left to test there.

“I can’t stand living this way, and am at rock bottom. How am I supposed to get better when no one can tell me what is wrong? The sight and smell of food make me sick, and I can barely eat. I force myself to get in three meals a day. Ever since my endoscopy test, I have been nauseous. What a way to live. I feel hopeless.”

November 2, 2010:

“My thought for today: ‘When you’re going through hell, keep going!’

“Because of chest/back pain and my family history of heart disease, I have now seen three cardiologists including a cardiac electrophysiologist. Been to see three different GPs, a vascular specialist, two endocrinologists, two shrinks, a pulmonary specialist, a neurologist, and two rheumatologists, too – all tests perfect. Was even referred to specialists at the famous Lahey Clinic near Boston. No doc on the planet can figure me out.

“I’ve had numerous treadmill stress tests, echocardiograms, even a heart catheterization because of this burning pain that goes across my clavicle area and upper back, burning along my arms as it mimics heart attack symptoms. I’ve worn 24-hour Holter monitors, and a handful of 3-day heart monitors. I’ve had my cardiac enzyme/tronopin blood tests repeated over and over – all normal.

“I was told by each cardiologist: ‘Your heart is healthy and normal – it just likes to beat a bit fast!’ I have a fast heart rate and no one knows why.

“This has turned me into a mental wreck. They don’t have me on beta blocker medication, which might slow down my heart rate, because my blood pressure is already low. They claim it may make me feel worse. I agree. And I don’t need to feel any worse.

“I also have a cough. Could it be my lungs, even though my CT scans show no disease? It’s the next step.

“Had an endo and colon check over a week ago that were normal – not even acid reflux.

“I want to add here that I am the opposite of someone who has no desire to live. I am trying real hard to save my life, yet it does not seem to be working. This is where all the anger, confusion and depression comes from. At least I can still get a good night’s rest. I guess I need to focus on the positives here, as the negatives are what make this all so much worse.”

February 7, 2011:

“Had a long visit with my regular cardiologist at my follow-up appointment. My hs-CRP test (C-Reactive Protein, a marker for inflammation) came back nice and low. That to me is awesome. We talked about my mild myocardial bridge (a band of heart muscle that lies on top of a coronary artery instead of underneath it) but he’s convinced that it’s not an issue at this time. Could be, if I had arterial plaque around that area, but I don’t.

“Do I have a real answer? No. But after all these dozens of doctors’ appointments and a battery of tests, I just need to relax and stop worrying. My Lyme blot test is still pending, so we shall see about that.”

February 21, 2010:

“I’m exhausted from this process, since nothing is being found.

“So now I’m back in the hands of my therapist and family doctor. I’ve been advised by my GP to give low-dose SSRI anti-depressants a try, maybe just 5 mg to start. But honestly, since I have this arrhythmia of unknown origin, I’m very afraid to start an SSRI after reading some negative studies. I feel like I’m caught between a rock and a hard place.

“I admit I am now very depressed, and may need to give in and try these  SSRI drugs. I take Xanax, but that’s not cutting it anymore. My nerves are so shot from all this, I can barely handle anything. Real bad place to be. Very scared!! I spend my days in my house as I am afraid to leave it. What a lonely life. I am pathetic. 😦

“I have been through ENOUGH. I just don’t have many more paths to follow here.”

February 22, 2011:

“It’s been 2 1/2 years now of feeling like I don’t know who the hell I am and why I even exist. I awake feeling like I’m about 102 years old. My exercise is limited now out of fear. In fact, everything I do is limited by my fear – fear of never knowing why I have such odd symptoms that no doctor can diagnose.

“I am 110% mentally exhausted trying to figure it out. I go on for the sake of my three beautiful children and husband who love and need me. My feelings are all over the place, and the anger I have within is something that I am working on in therapy.

“I pray there is hope for me to find myself once again, because right now I feel angry. Confused. Lost.”

February 24, 2011:

“I have a diagnosis!”

“Now sit down for this one. After 2 1/2 painful years of test after test and about 15 different doctors – I have Lyme disease!!

“My 11 year-old son has been diagnosed with Lyme too. He now takes several pills a day. He will be okay, thanks to my ability to know something was wrong and put it all together myself. I should not have to do that! All because of the mistake of one physician who made a bad judgement call.

“My son’s case is truly sad. He was bitten by a tick in October 2009. The tick was pulled out by a school nurse. We took him to his pediatrician right away, but were told this was not a deer tick. And my son seemed okay, no rash, but a week later I took him back because of a swollen node at the site of the bite:

‘Don’t worry about that, means nothing, very common!’

“Well, the swollen node is classic to Lyme. Then my son started getting painful joints:

‘Don’t worry, it’s growing pains!’

“Then headaches out of the blue:

‘Don’t worry – tension!’

“Finally tested him for Lyme disease six months later – negative. Then in the fall, my son got a strep infection, then developed a facial tic. We were told it was possible PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infection) from the strep or stress.

“It was at this point that I said: “No!! This is crap!” and asked them to run a Western blot test for Lyme disease – and there it was. CDC positive for Lyme.

“How criminal this all is! My faith in our health care system is shattered even more now.

“Many of the doctors I saw did mention Lyme disease to me. We live in the Adirondack Mountains of New York where deer ticks are common. We have a boat and camp, and spend all spring and summer outdoors. These doctors tested me for Lyme via an ELISA blood test (Enzyme-Linked Immunoabsorbent Assay). Well, ELISA in many patients is not a sensitive enough test. And none of the doctors thought to run the more accurate Western blot test. My Lord, does that anger me! And yes, a Lyme disease diagnosis explains all of my symptoms. It’s all in my never-ending pile of medical charts.

“My family doctor knows nothing about how to read a Western blot test, so he gave me a negative result But this blood test shows something called Band 23, which is Lyme specific. I have no idea how I got this. I have no memory of a tick bite, which is typically how Lyme disease is transmitted.

“I knew I was ticked all these years for a reason. Nice to know now I’m not crazy!

“I guess it WAS a panic disorder – panic brought on by a bacterial infection in the blood caused by a stupid bug.

February 25, 2011:

“My husband was in tears looking through copies of all the medical tests I’ve had. He said this is the first time he has realized how awful this has been for me. We also found one of my ELISA Lyme tests dating back to a year ago. Results looked on the high side, but still within normal limits. That now raises a big question in my mind.

“While I’m relieved in a way, I am also in tears and depressed. This is a sad situation that has left me and my husband pretty much broke.

“I put my body through unneeded tests when a simple blood test held the answer. And all the sinus tachycardia lead to spending thousands of dollars in E.R. and cardiology visits.

“No one should have to go through what I did to find out. It’s human torture, filled with anger and lots of tears. I need to stand up strong now and fight like hell.”

♥  ♥  ♥  

Lyme disease is commonly carried by black-legged ticks, which live in wooded, brushy areas. If an infected tick attaches to your skin to feed, the bacteria that cause Lyme disease can get into your body and, as you can tell from this story, make you very ill. (Note: soft-bodied ticks carrying Borrelia can infect you with Tick-Borne Relapsing Fever even though they generally, unlike ticks that cause Lyme disease, stay imbedded in the skin for less than 30 minutes).

The Centers for Disease Control and Prevention offers these tips for preventing tick bites that can cause Lyme Disease:

• If you can, avoid areas with ticks, particularly during peak tick season (late spring to early fall). These include wooded and brushy areas with high grasses and leaf litter.

• If spending time in a tick-infested area, wear long sleeves, long pants, and long socks. Also, consider wearing light-colored clothing, which can make ticks easier to see and remove. Tucking your pants into your boots or socks, and your shirt into your pants, can keep ticks on the outside of your clothing.

• Apply an insect repellent with DEET to your clothes or exposed skin. You can also use an insecticide called permethrin on your clothes, but this shouldn’t be sprayed on skin.

• After being outdoors, check for ticks, especially in skin folds such as in the armpits, in the groin, and behind the ears. Be sure to check both yourself and your children. Young ticks are tiny—about the size of a poppy seed—so they can be difficult to spot.

• Make sure that ticks are not brought home on clothes. It’s a good idea to wash clothes in hot water and dry them on high heat for at least an hour.

• Use tick medicines or collars on cats and dogs. Check pets frequently for ticks.

• Create a tick-safe zone if you live in an area with ticks. Remove leaf litter and brush around your home and at the edges of your lawn. Put wood chips or gravel between lawns and wooded areas, and keep your lawn mowed. Place playground equipment, decks, and patios away from the yard edge and trees. In some high-risk areas, you might also apply a pesticide to your yard. One application at the end of May or beginning of June can reduce tick populations by 68-100% percent.

A tick usually has to stay attached to your skin for at least 24 hours (NOTE *  see comments below for more on this) before there’s much risk of it making you ill.

The most common symptoms include:

  • a rash spreading out from the bite, usually after one to two weeks, looking like a bull’s eye, that can become very large (about the size of a dinner plate) – but not everyone gets a rash (as many as 60% of cases show no rash, or the rash may go undetected if it’s in body hair or private parts)
  • flu-like symptoms
  • severe fatigue
  • chills or sweats
  • fever
  • headaches, blurred vision
  • digestive problems
  • muscle and joint aches, cramps
  • shortness of breath or cough
  • chest pain or rib soreness
  • heart palpitations
  • facial flushing

Although most people recover from Lyme disease, the infection can cause serious health problems. However, your chances of these problems are low if you’re treated early with appropriate antibiotics.

Learn more about what’s been called “an infection that has been burdened with a thousand inaccurate medical diagnoses”, including a report by Dr. Virginia Sherr published in the Journal of Psychiatric Practice called Panic Attacks May Reveal Previously Unsuspected Chronic Disseminated Lyme Disease

This post was included by Dr. Val Jones in Grand Rounds on March 22, 2011.

UPDATE February 21, 2016:   Read my response to Angela’s comment (below) for an update to our patient’s story!!

See also:

78 thoughts on “It wasn’t heart disease – but what was it?

  1. Your story sounds very similar to what I’ve been going through the past year and a half. What doctor did you get to have the western blot test done? Both times I’ve been tested it was the basic Elisa test which came back negative. I don’t remember being bit, but this all started shortly after camping in upstate NY. How were you treated and how are you now??


  2. I know how old this post is but your story really moved me. Are you and your son better? I need to know to give me hope. Every time I think I’m better I have another “episode.” I’m so exhausted.


    1. My last post sounded a bit selfish. I also want to hear you’re doing better for your sake, not mine; sorry I wasn’t clear about that. I feel for anyone with this disease. It’s ruthless!


        1. UPDATE: Read this, as posted on my facebook page today!!

          “Crazy to think it’s been 5 years this month that they finally figured out why all of a sudden two years prior, I was saddled with extremely strange and debilitating symptoms. Nothing was adding up and up until that time,I had never experienced any other illness in my life aside from the normal common colds and virus stuff that pretty much affects most of the general population. So.. I’m feeling pretty appreciative that 7 years later I’ve kicked this tick borne illness right in the rear. 👍 💚

          “I can’t say my first reactions to this new way of life were all that positive at the start. Unlike the well known illnesses out there that have a pretty standard treatment plan in place, chronic Lyme and its co-infections don’t work that way. In fact, only about half of the medical community even believes it’s a real disease! Imagine being up against that? Baffling and maddening! However on the flip side, I’m truly thankful for this journey because I’ve learned so much about microbiology and other phantom illnesses that now my general doctor asks me for opinions! 😂

          “I’m also really pleased to stay a strong advocate for the many out there who are still trying to figure things out and as a voice to get legislation to make a positive change – and a HUMAN one I may add! And the people I’ve meet along the way.. Wow! 💚

          “They are some of the most incredible people on this planet. The Lyme community is so very loving, committed and STRONG. This is such a good thing. So I’m now tagging some of you who have really in simple little ways just been there for me whether you know it or not! Because my appreciation runs very deep!

          “To my IST ladies (you were my first since they were certain I had IST, well in a sense it was IST but it had a cause).

          “To Carolyn at Heart Sisters.. You, 💜💜💜 I can’t say enough about. 😊

          “You were there for me on Inspire and then took the time to publish our story. Seeing that it made a medical journal’s post was really incredible and so appreciated.

          “For the latest information on Lyme disease feel free to visit


    2. I had cdc positive Lyme (got in 1997 but didn’t treat until 3 years ago). Felt a little better at first then bad again, then even worse. Assumed bart and babs due to symptoms.

      I finally got scarlet fever and realized I’ve had rheumatic fever since childhood and it’s been worse then Lyme. All of my docs and especially Lyme doc had all symptoms and blood work clues. Textbook!! Yet no one even suggested. And since I thought I was allergic to penicillin, and have never taken much that works well on Type A strep, the bacteria has been living in many places and reactivates (I thought they were spirochete and feel like such a fool) is when fatigue worse or joint pain or bad nervy neck and thoracic pain or worse yet if get a fresh strep type A germ and then sick meningitis headaches.

      I’m taking Levofloxacin for the first time and it’s breaking through ear, eye, neck, jaw, shoulder, back–all kinds of areas that have bothered me or been red or affected for years!!!!

      Also Google neisseria — a parasitic bacteria. I’m going to ask my doc to test me for that because used to swim in lakes and snort the stagnant water. All pretty common and the symptoms umbrella all the new autoimmune diseases. Difference is one is simpler and cheap to control and the other is a trillion dollar business and keeps millions uncomfortable, miserable or kills them earlier than necessary.

      Liked by 1 person

      1. What a story, Tina! You’ve had undiagnosed rheumatic fever since childhood? I hope you’ve turned a corner and will enjoy long overdue good health for a long time… Best of luck to you.


    3. Hi Angela it’s Christine* & I’m just getting to respond and feel terrible I missed an email alert from July.

      Yes I’m doing exceptionally well these days. I can say that I don’t look at Lyme as a curse anymore but more of a blessing to opening my eyes to a deeper sense of gratitude on just about every level in life. I’m monitored closely by my GP and a team of specialists every couple months to keep things in check.

      I want you to know there is hope. Do not give up and do realize that Lyme is a very individual disease. So many treatments are available and it’s like finding your way through a corn maze in the dark. However, there is light in that darkness once you find one that works for you! Hopefully by now you’ve found this. My best to you and to anyone the suffers from a tick borne illness. I’ve attached my FB page link to the bottom of this message. Stay strong. And NEVER GIVE UP! 🙂
      (*Christine is the woman whose story was featured in this post)

      Liked by 1 person

  3. I cried as I read this. I could have written every single word. Thanks to this article after 7 years of torture, I am setting up an appointment to be tested.


    1. I have to thank Carolyn for posting my story. I’m deeply touched that it’s reached so many and it’s still generating responses. I hope by now Tina you are on the road to recovery. Lyme is tricky and so are its co-infections that come along with it. Stay strong and NEVER GIVE UP!

      Liked by 1 person

  4. Your account was very well written. I hope you are doing well now. I came across this while searching for heart symptoms because six weeks after my embedded deer tick was removed, I began having arrhythmia, which is becoming worse. I wasn’t put on antibiotics by my primary care physician soon enough, even though I asked her to, because I already suffer from arthritis that has robbed me of my athleticism and ability to play my piano and violin. My rheumatologist put me on antibiotics just before I got horrible flu symptoms and a bad case of bronchitis.

    Now I’m having all these other symptoms, including forgetfulness. My initial lyme test was negative, but I wonder if it would still be negative two months later, or after being on doxycycline for six weeks. Could antibiotics prevent positive results from showing, or are they a guarantee to halt lyme?

    Liked by 1 person

    1. Hi CM – Again getting back to people after so much time has passed. It’s very possible to have a negative test result after coming off antibiotics (abx). The abx force the bugs out of hiding hence the fact that one can feel worse before they feel better. Once off them, if there is still an active infection, the bugs go back into hiding and burrow deep into tissue, thus evading test results. It’s a very insidious infection.

      But also remember too that it’s not always a test that gets to a diagnosis. Not with Lyme anyway. Clinical symptoms often lead to treatment. Not sure where you’re at, but I hope you are well on your way to a good place.

      Liked by 1 person

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  6. Hi
    Hope you are doing well. I have the same symptoms as you and some. How high did your heart rate go? What did the hospital tell you when you went for tachycardia? Did you take antibiotics? Are you better now? Hope to hear from you soon.
    Laura 🙂

    Liked by 1 person

    1. Hi Laura, well a little late getting back to this thread but better late then never.

      What did they tell me? They told me I was crazy. That it was all in my head. That you don’t go to the ER with tachycardia. However, none of that was true. My heart rate would go as high as 170. Sometimes sustained so long I almost passed out. This all led to a heart Cath and numerous other heart studies and monitors, all turning up empty for anything serious.

      It was the bacteria causing this dysfunction. I still am monitored by my GP and a team of specialist every few months. All in all the ER was of no help and it was very disturbing.

      Liked by 1 person

      1. Thanks so much Christine for checking in and responding so beautifully to the personal stories of the individuals here. Yours is an amazing story that truly did touch so many people. I still get teary-eyed when I read the words you wrote about your illness back in 2010, and I’m very glad that your health has improved so dramatically. Best of luck to you….


  7. Hi Carolyn. I know it’s been a while but I still think about you and the fact that you were so kind to take the time to publish my words over 4 years ago. I can honestly say that meant the world to me and still does.

    I wanted to let you know that my son has remained cured since he went off his abx over 3 years ago…and is on his way this fall to becoming a freshman in HS. Can you believe that? 🙂

    I’ve regained about 90 % of my strength. I still have some days where I need to say I’ve done enough, but at this point it is what it is.

    Lyme disease has gained much more attention since I wrote the above. I devote any spare time I have during my days and nights to helping others find the care they need. It certainly feels good to give back.

    I hope you are well. And thank you again for publishing me.

    Christine. ❤

    Liked by 1 person

    1. Hello Christine – how lovely to hear from you again (and especially with such good news about your son!) You and he have been on such a profoundly life-altering road since your nightmare started. I’m so glad you both are better than you were. Best of luck, and thanks for keeping in touch.


  8. I just read my story!!! The only difference is the type of tick/borrelia. I just finished 6 weeks of Doxy but headaches not gone. Have you fully recovered? What worked for you?


    1. If you have a source for that info, please send it in. The data I have from the CDC says “blacklegged ticks need to be attached for at least 24 hours before they can transmit Lyme disease. This is why it’s so important to remove them promptly and to check your body daily for ticks if you live in an endemic area.” The Maine Infectious Disease branch says 24-48 hours.


      1. Forgive me for answering instead of TJ but I’ve been a collector of the latest scientific information about ‘tick spit’ for years. TJ is right and the CDC is mostly wrong about the transmission time. I guess they haven’t read the Pubmed articles I have.

        Although there’s no doubt that transmission of Bb (Borellia burgdorferi) is more efficient after a couple of days of attachment, there are also many studies that show it CAN happen within a few hours.
        Let me say first that I’m glad I live in a country that has something like the CDC available. For the most part they’re a reliable source of information about many different diseases.

        When it comes to Lyme disease its track record is abysmal. I could present a point by point of dismissal of what the CDC has on their web site about Lyme disease but I won’t— suffice it to say that it would be very long. 😦

        I have a very full, very long file about transmission time for Lyme but I’m just presenting a few here.

        “Of the 10 known tickborne-associated bacteria of the B. burgdorferi sensu lato complex, the 3 species implicated in human diseases (B. burgdorferi sensu stricto, B. garinii, and B. afzelii) are the organisms most frequently isolated from ticks.”

        [Wrong! I would have to look for the citations for those, but I would think that even the CDC could have found that.]

        “Bacteria may invade and multiply in all of the organs and fluids of ticks, and their detection in the hemolymph or salivary glands is relatively simple.”

        “Competent tick vectors acquire B. burgdorferi while feeding on infected reservoir hosts.
        The organisms remain inactive in the midguts of the ticks while they molt, and in the next developmental stage the spirochetes disseminate rapidly (within 3 days) to all other body organs, including the salivary glands”

        [my note: the ‘3 days’ means in the tick’s body, not on the ‘infected reservoir host.]
        “The white-footed mouse (P. leucopus) is regarded to be the most important reservoir of B. burgdorferi sensu stricto in northeastern America.”
        [The west has its own reservoir host (name eludes me at the moment) but both of these live in our gardens, within the walls of our homes.]
        “The saliva may also contain disease organisms, such as Borrelia burgdorferi which cause Lyme disease.”
        The following case studies demonstrate that transmission time is lower than what the CDC states. One even demonstrates that contact is all that’s necessary.

        “A CDC epidemiologist, Dr. Paul Mead, offers many
        reasons for the under-reporting: some people don’t know they
        have the disease and don’t seek treatment; others are
        misdiagnosed; some get borderline blood test results that don’t
        meet the CDC criteria; and sometimes frontline doctors fail to
        report cases.”

        [my note—- and a hundred other reasons! sigh]

        Carolyn, forgive this long post. I sorted through hundreds of documents and have tried to keep this simple. Can’t be done, when talking about Lyme.

        To bring this back to the heart:

        — and on and on.


      2. Facial Tic after a strep infection also causes Sydenham’s Corea (think the spelling is correct) a type of rheumatic fever variation. The pedi neurologist said that he hadn’t seen it in 20 years and that same year he saw it in another little girl. is where the infection attaches to the end of the nervous system rather than the heart. My daughter had it at age 10 when a strep infection went undiagnosed.


      3. I apologize for the delay in getting back to you. I am fighting Late-Stage Neuro-Lyme disease, and have heart disease due to underlying infection.

        I was infected after being bitten by a tick in 1998. The tick was not on me for any longer than 1 hour at the most. It was believed one could not be infected unless there was at least a 24 hour attachment. This was based on the theory that Bacteria was regurgitated from the stomach. Current research now proves Bacteria are also in tick saliva. In addition, it is not only deer ticks that are transmitting. Lyme can be transmitted by all ticks, fleas, mites, through the organ and bloodbanks, in utero, and through breast milk.

        Standard testing has an 80% rate of false negative. Please google “Under Our Skin” and scroll to HULU to view a life-saving documentary.

        More info here. Please review research by Thomas Grier, Dr Alan MacDonald, Dr Luc Montagnier (discovered HIV) to name but a few.


        1. Thank you Nancy for links to these resources on Lyme. I just learned, for example, that washing clothes doesn’t destroy ticks (you need at least 30 minutes in a hot dryer) and that only 30% of people with Lyme will exhibit that well-known bulls-eye rash symptom. I’ve corrected my blog post to reflect that. What a horrible and heart-breaking diagnosis this is!


      4. It depends on the tick. The soft bodied ticks that carry B. Hermsii don’t imbed. They feed only for a few moments, usually at night, so most can’t identify when the bite occurred.


        1. Thanks for your input here, Shannon. Sounds like you have had to learn far more about your Tick-Borne Relapsing Fever (see more comments below) than you ever really wanted to. Your diagnosis prompted me to look up the phenomenon of the soft-bodied ticks that fall off – found this useful resource confirming the short but devastating visitation period of soft-bodied ticks.


          1. Great summary. Thanks for sharing! Most of the information is about Lyme & even doctors see them as similar… all feels the same to the sufferer :-/


            1. My horrified impression is that many doctors simply have no clue about tick-borne diseases, Lyme or otherwise. There are at least 11 recognized tick-borne illnesses – and those are just the ones that are officially recognized. An appalling public health crisis.


    2. That ‘myth’ (48 hours of attachment before infection) has been laid to rest for so long—— and yet it still lingers on. Sigh.

      Here is a YouTube presentation made by Dr. Stricker, one of the foremost doctors that treat Lyme. Science to back up the short attachment time. The longer the infected tick is attached the more certain that infection will occur, but it definitely isn’t a requisite!

      (Presented at the Lyme Disease Think Tank at BC Women’s Hospital and Health Centre. April 13, 2013)


  9. Thank you for your story. I had Lyme that was misdiagnosed as other things for 11 years. Thank you for speading the news that Lyme looks like so many other illnesses.


  10. Reading all of this stuff is now making me think worse than I usually do. I was diagnosed with fibromyalgia around 10-12 yrs. ago. I have gone thru a lot of trauma over the last couple years. Anyway, these last two years have been the worst.

    I have been nonstop to doctors. The tests are unreal and yet nobody can find a main reason. Two yrs. ago I started by having chest pains and pains in the middle of my back (burning). I went to ER got all tests done to see if I was having a heart attack, everything was normal. The dr. said I had nothing to worry about because I was too young to be having a heart attack. So they sent me on my way.

    Sometime later started having these chest pains again, now to the point hunched over crying cuz of pain. Leave work to go to ER. All they did was an ultrasound on my gallbladder, it was normal. The doc said I am going to assume that you have acid reflux – drink this it will help. About 1/2 hr later I told the dr. that the pain didn’t subside any and was still as bad as when I came in. He now got me a shot of pain meds. Sometime later he came back and the pain still was not gone or any less. I got another shot of pain meds, a prescription for acid reflux meds and pain meds then was sent home.

    I was still crying in pain when I left the hospital. That night I was home all I did was pace and pace and cry. My dad came home in the morning saw me this way and made me go to a different hospital. That hospital did the same exact thing the first one did. Endoscopy result show that everything is great absolutely no acid reflux, but he did come across polyps on my vocal cords. So now he wanted me to see a specialist about the polyps and a surgeon about my pain cuz it may be my gallbladder (which I had tests done on and they all were normal).

    Surgeon says even tho tests were normal she wanted gall bladder out. They didn’t know exactly what was going on so it was now a process of elimination. They took my gall bladder out. Then I went to specialist about polyps. He wanted them out and checked for cancer. It was going to be two surgeries. Before I had the throat surgery, I had to heal from gall bladder removal. During healing my symptoms got worse. Anything I would eat I would get severe pains in my stomach, to the point where I would try to curl up on top of the toilet, and would have horrible diarrhea. I tried keeping notes to see if was something specific I was eating. But it wasn’t. And it just kept getting worse.

    I didn’t say anything to doctors. I had right side polyp removed from vocal cord, had to wait til healed to get other side done. Meanwhile I went to see my family doctor, she noticed the huge weight loss I had. She wanted to know what was going on. I explained.

    She sent me for CAT scan of chest, to a cardiologist, and for colonoscopy. The CAT scan showed nodules in my lungs but I was told not to worry about them. The cardiologist just sat in a room with me asked me a ton of questions, did a quick EKG and sent me on my way. Everything was fine, I was too young to be worrying about my heart (even tho I explained that my mom had mitrovalve prolapse and died).

    I went for the colonoscopy. That doctor said everything was normal but he did find a polyp in my colon and removed it. I went back to get my other polyp removed from vocal cord. The doctor also fixed my deviated septum at the same time. My throat was fine (so I thought).

    The symptoms were terrible for a yr. I couldn’t eat anything, I was getting sick all the time. Sometime I would even get half of my meal down and was running to the bathroom. I would have such excruciating pain until I finally had diarrhea. The pain stopped me from doing whatever I was doing because if I didn’t get to a bathroom immediately I would have to get in fetal position til the pain subsided so I could run to the bathroom. Oh I left out the first gastro doctor did tell me that it was IBS. Then out of nowhere I started having horrible pain thru my whole body. I was extremely achy and my muscles where cramping and burning. My family doctor said my fibromyalgia was flaring up.

    I was now given so much meds between all these doctors it was crazy. My family doctor recommended I find a different gasto doctor. I did, went to see him. He reviewed all blood work, tests, surgeries, doctors, hospitals, past, and family history. He wanted me to get blood work for celiac disease and Crohn’s (I think). Blood work came back normal. I went back to the doctor for my throat to get a check up. I can’t smell since the operation and I don’t have a voice. I am hoarse all the time and nobody can ever hear what I am saying. He said that neither are from my surgeries. He had me allergy tested because that’s what the problem was.

    It did show that I had an allergy to everything they put on my arm. I was supposed to go for allergy shots once a week for the next three years, I didn’t do them. So just recently the gastro doctor sent me to hospital, I had to drink barium and get tons of x-rays. I have not gotten any results yet.

    My life has altered so much due to this. I can’t go anywhere to eat cuz I don’t know if I am going to get sick. I don’t know how long it will take me to get sick after I eat. The only good thing was all the weight I lost. So if anyone here could help out I would appreciate it.


    1. Please know that Lyme is the underlying factor of Fibromyalgia, as well as most neurological, autoimmune diseases, as well as Autism/Autism Spectrum. Standard testing is very unreliable, so tests should be done through Igenex Labs by a Lyme-Literate MD. You can find one of these specialists by contacting or Please google “Under Our Skin” – scroll to HULU to view life-saving documentary. The treatment for Lyme Disease (other than acute stage) is long-term treatment w/antibiotics. It is my belief that integrative medicine is the most effective for this disease. With appropriate treatment, remission and good health are possible.


    2. Hoarseness — yes!!! My ENT called it dysphonia — unsuccessfully treated with Botox, then reflux — but I won’t take PPI. I’m being treated for Tick Borne Relapsing Fever & my Infectious Disease doc thinks it’s related but wants me to see a specialist at UCLA because he can’t hear most of what I say. Have you found any relief?


    3. Hi Jodie,
      I’m going through same things right now. Could you please tell me if doctors ever find out what went wrong.
      Thank you,


    4. I know this is an old post but I had to message you. Have you ever heard of Elhers Danlos syndrome or mast cell activation syndrome? All your symptoms fit the mast cell activation syndrome and it is very often comorbid with Elhers Danlos syndrome which mitral valve prolapse are one of the diagnostic criteria along with hyperelasticity in joints.


  11. Hi Carolyn.. It’s Christine. I wanted to let you know that as of this July 4th.. My son is done with treatment. Yes.. he beat early disseminated Lyme disease. 9 months of abx.. lots of supps.. and a GREAT LLMD. We are thrilled, it makes my heart happy.

    I’m doing better. For me the road will be longer.. but I knew that from the start. Thanks again for all your support and love when I was posting on

    I apppreciate this article and I read it often to look back at where we were and where we are now.



    1. Thanks so much for getting in touch, Christine. I often think about you and wonder how you and your son are doing. Great news about his recovery!! And good luck to you in your continuing journey towards good health.


    2. Newcomer here and not a heart disease victim, as of this morning 🙂
      But a long time victim of Lyme disease and its ‘friends’ bartonellosis, babesiosis, other tick borne diseases.

      Christine I’m glad that your son is doing a lot better and I hope you follow his example.

      This is a post I was going to put on The Ethical Nag but Carolyn suggested that this might be a better place for it—- and I agree! I never thought to look on Heart Sisters for something about Lyme disease—– who’d have thunk? Except for the fact that Lyme patients have a 25% incidence of myocarditis!

      I’ll just copy/paste my post with the explanation that I was responding to posts on The Ethical Nag and ‘celebrity poster children’ was mentioned.

      Start copy/paste:

      A celebrity ‘poster child’—— a famous author has/had Lyme disease (it waxes and wanes and also has degrees of ‘illness’) was asked about being a poster child. She was very up front with the reasons and it does make sense. (She now seems almost completely ‘cured’)

      If a celebrity ‘admits’ to having a disease that isn’t ‘curable’ (like heart disease or Lyme and many others) automatically the publishers or producers of movies or other contractual entities start to shy away. “Will s/he be able to perform at that concert or speaking engagement?”

      Michael J. Fox seems to have overcome that (kudos) but not many do.

      Completely off topic here [added—- to The Ethical Nag thread] but very pertinent to online support. Lyme disease patients are not only misunderstood by friends and family—— but it’s a ‘disappeared’ disease: So named by the author of Cure Unknown, Pam Weintraub (a Discover Magazine editor). Even most doctors ‘deny’ that they have it. So online support is sometimes the only support they have.

      Too bad all the online support groups have now been taken over by er um, wackos.
      If a doctor uses a search engine (gasp) to research Lyme disease they’ll get a mixture of the misinformation about it from the CDC, IDSA etc and the aforementioned ‘wackos’. Sigh.

      I was a member of many of those online sites, back in the day, and they were my only source of support and good information. (I also was leader of an ‘in vivo’ support group and had my own Lyme disease web site, now disbanded.)

      Now, unless you can winkle out the chaff from the wheat, it’s ‘member beware’!!!

      I’m glad to see that Lyme is mentioned here and I hope others will join in for this serious and devastating disease and be aware of the overlap, in some cases, of heart problems and Lyme disease.


      1. For those that want some science to back up the statement about Lyme and myocarditis:

        Eur Heart J. 1991 Aug;12 Suppl D:73-5.
        Lyme borreliosis as a cause of myocarditis and heart muscle disease.
        Klein J, Stanek G, Bittner R, Horvat R, Holzinger C, Glogar D.
        Dept. of Cardiology, University of Vienna, Austria.

        Lyme borreliosis (LB) is a multisystem disorder that may cause self-limiting or chronic diseases of the skin, the nervous system, the joints, heart and other organs.

        The aetiological agent is the recently discovered Borrelia burgdorferi. In 1980, cardiac manifestations of LB were first described, including acute conduction disorders, atrioventricular block, transient left ventricular dysfunction and even cardiomegaly.

        Pathohistological examination showed spirochaetes in cases of acute perimyocarditis. Recently, we were able to cultivate Borrelia burgdorferi from the myocardium of a patient with long-standing dilated cardiomyopathy. In this study, we have examined 54 consecutive patients suffering from chronic heart failure for antibodies to Borrelia burgdorferi.

        On ELISA, 32.7% were clearly seropositive. The endomyocardial biopsy of another patient also revealed spirochaetes in the myocardium by a modified Steiner’s silver stain technique. These findings give further evidence that LB is associated with chronic heart muscle disease.

        PMID: 1915460 [PubMed – indexed for MEDLINE]


      2. G Ital Cardiol (Rome). 2011 Mar;12(3):214-6.
        [Complete atrioventricular block as the first clinical manifestation of a tick bite (Lyme disease)].
        [Article in Italian]
        Bacino L, Gazzarata M, Siri G, Cordone S, Bellotti P.
        S.C. di Cardiologia Ospedale San Paolo, Savona.


        A 52-year-old male patient presented to the emergency department because of malaise and frequent dizziness. The ECG revealed high-grade atrioventricular block that required placement of a temporary pacemaker.

        There were no other abnormalities in physical and echocardiographic examination, and coronary angiography excluded the presence of coronary artery disease.

        IgM and IgG antibodies against Borrelia were positive, and antibiotic therapy with ceftriaxone at the dose of 2 g/die for 15 days resulted in rapid regression of atrioventricular block.

        Seven-day ECG recording immediately after discharge and 24h ECG monitoring at 40 days confirmed the total disappearance of atrioventricular block. This represents a case of atrioventricular block as the first manifestation of Borrelia infection (Lyme disease).

        A prompt diagnosis and antibiotic therapy usually result in complete resolution of atrioventricular block without the need for a permanent pacemaker.

        PMID: 21560478 [PubMed – indexed for MEDLINE]


        My comment: It was nice to read about a person who got tested for Lyme and treated immediately. That doesn’t always happen but when it does—-Yay!


        1. Another good outcome, dependent on a doctor who actually thought.

          J R Coll Physicians Edinb. 2010 Jun;40(2):121-2.
          Lyme carditis: a reversible cause of complete atrioventricular block.
          Bhattacharya IS, Dweck M, Francis M.
          Cardiology Department, Victoria Hospital, Hayfield Road, Kirkcaldy KY25NG, Fife, UK.


          A 54-year-old American woman presented with an episode of syncope. This had occurred against a background of several days of dizziness and palpitations. Her medical history included Bell’s palsy, which had been diagnosed three weeks earlier.

          On examination, she had a resting bradycardia of 31 beats per minute and her electrocardiogram demonstrated third-degree atrioventricular (AV) block. She was referred to cardiology for consideration of permanent pacemaker implantation.

          Given her facial nerve palsy and AV block, a diagnosis of Lyme borreliosis was suspected. Within 48 hours of initiation of ceftriaxone, she reverted to sinus rhythm, albeit with a marked first-degree AV block.

          Subsequent serology confirmed the diagnosis. Reversible causes of complete AV block should always be considered and appropriate therapy may avoid the need for permanent pacemaker insertion.

          PMID: 21125053 [PubMed – indexed for MEDLINE]


      3. Thanks so much, Cave, for re-posting your comment over here in the Lyme Disease section of Heart Sisters! I still believe that Christine’s story is appallingly tragic – and to think that so many continue to be underdiagnosed and undertreated in this day and age – shocking. Thanks also for including the reference link (above).


    3. Hello, I am going through the exact same thing…..your diary could be mine…I am in shock! Mine all started a month before my first child was born and seemed to be triggered by a steroid injection. I had many symptoms before the injection but my heart and anxiety all started after the injection. I am going to an LLMD ASAP. I have run the gamut with doctors as well, and even had a needless surgery performed to no avail.


  12. Hmmmmmm. Sounds a lot like my story. Many years of abuse and neglect, and hearing “…it’s all in your head”.

    So many years of being undiagnosed, my children have it . My God Almighty! Lyme Disease ( and it’s co-infections ) are a multi-system bacterial infection, with dashes of other bacteria, viruses, fungus, and God knows what else.

    What’s it going to take to make them realize this epidemic for what it is – AN EPIDEMIC! This just ain’t right. 😦


  13. I am the woman in this article.

    Forget the cost to our already 100% corrupt health care system. It cost me about 10 grand out of pocket for all these unneeded tests. I can never get those years back, and all because doctors don’t take a patient’s odd symptoms in a serious fashion and actually take the time to research things. They just zap us through machines, poke our arms for blood, then chalk them up as a crazy person in serious need of some magic pill called an SSRI that will turn their life around.

    Very unethical.. much disgust on my part!

    Liked by 2 people

    1. Your story is EXACTLY like my story.

      I spent a week in the hospital in the fall of ’09 ( at my demand ) to have a full battery of tests, and all I came out with was “Oh you have Innapropriate Sinus Tachycardia.”

      I couldn’t take a beta blocker either, so the cardiologist told me to take Zoloft!!!! I didn’t find out it was Lyme until the summer of 2010. I’d had it since 2001 when I went back and looked at ALL of my old medical records. I’d had reactive bands dating back that far, but nobody ever said a word.

      Between doctor bills, tests and lost income, I am out about $300,000 by now. I’ve been on abx’s for 6 months now and am still so so very sick. 95% of my friends and family have turned their backs on me because all this time they thought I was just nuts and wanting attention. It’s been the most hurtful thing ever. I hope to someday recover, but I think I am emotionally damaged beyond repair because of all the mean things that have been said to me, when all I wanted was to feel better and find out what was killing me. I was told by doctors I was paranoid, attention seeking, doctor shopping, hormonal, needy, hypochondriac, I was somatisizing my symptoms, and that I just needed to stop the nonsense and learn to live this way.

      This Lyme debacle has GOT TO STOP!!! People’s lives are being devastated and all the medical system can do is bully victims and turn their backs on people who are suffering. It is nothing but criminal. Plain and simple.

      Liked by 1 person

      1. I have Lyme, bartonella and babesiosis. I was diagnosed after 8 years, then told off and on Lyme is gone it’s autoimmune now and so on.

        I had 3 children who have had health issues and get this! My ex created a picture that I make everyone sick. My middle daughter had bartonella very badly. He got the school to think it was truency and I lost my children completely. I am all alone with supervised visits, They would not let the Lyme drs testify right here in the USA. Pray for us please.

        Liked by 1 person

      2. Yes!! My neurologist told me it’s all anxiety! My cardiologist said my 70 pound weight loss has my body in a readjustment period, and my primary scratches her head & calls it allergies?!? I have great health insurance through the hospital where I work, but the infectious disease doctor treating my Tick Borne Relapsing Fever requires cash pay now. Wondering if my insurance will reimburse, but desperate enough to go anyway…


    2. Dear Christine, I have been going through hell as well, much like you – one illness after another (cancer, ulcers and now crazy heart symptoms even tho the many tests say my heart is fine). My kids (grown) now think I am crazy or a negative ninny, that I am too stressed and need anxiety medicine, and yet I have many of the same symptoms and experiences as you.

      Thank god for your article… at least I don’t feel so alone and crazy. I was bitten by a bug about 2 years ago come July. It swoll up and hurt like crazy. I went to the Drs. for antibiotics, given ampicillin, ended up having my throat and tongue swell, and couldn’t breathe, went to ER twice, sent me home, said it was in my head, and the list goes on and on…

      3 of my tests show irregular electrocardial abnormalties, but my cardiologists did 3 tests and told my kids my heart was fine and that it was anxiety. Nitro tabs worked for a short time but now seem to make things worse.

      I will have my GP test for lyme disease thanks to you. Whether or not it is that, it is something and they do not listen nor care, all they want is money for tests and to prescribe drugs, not find a solution. THANK YOU, I hope to hear from you again. You can email me if you want to correspond at


    3. Yes!!! When I refused the SSRI, citing my desire to find a cause & cure, not a mask for my odd combination of symptoms, the rheumatologist said “come back when you feel bad enough to try them”, the neurologist just keeps prescribing anti-inflammatories, and the list goes on…..

      Not enough bands on Western Blot test for most to treat Lyme so I’m “thankful” that a doctor tested for specific antibodies to diagnose Tick Borne Relapsing Fever. You see much less information about it than Lyme, but it feels the same….


  14. My daughter has been going through these same diagnoses since August….has been tested for everything, has Scoliosis, Sinus tachycardia, Anxiety, 2 clogged Sinus Cavities, Vit D deficiency, we were told by the Cardiologist (since we can’t control the Sinus Tach) that he thinks it’s a panic disorder, to possible Fibromyalgia.

    Even had the ER tell us she had an Enlarged Thymus gland. She lost almost 25 pounds (she is 17 yrs old, senior in high school and at her low point was 85 pounds and is up to almost 90). Saw the Cardio, had the 24 holter monitor, saw the Pediatric Endocrinologist. Spent an ungodly amount of time and money with no answer to her weight loss, symptoms, or why she developed the Sinus Tach…

    Boy does this sound familiar, thanks.


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  16. The lesson thats clear here — besides the torment of this poor woman for years of course — is how many expensive and unnecessary medical tests and procedures and consultations with specialists this misdiagnosis cost her and the health care system.

    Liked by 1 person

    1. That’s absolutely ludicrous. The “expensive and unnecessary medical tests and procedures” occurred because her symptoms were atypical and her continued symptoms ratcheted up the search. Like it or not, a western blot was not indicated per the standard of care set by the CDC, which is based on the sensitivity and specificity of the tests. Given her atypical symptoms, the 95% specificity still results in a less-than-stunning post-test probability. Entry-level Bayesian analysis.

      But no, it’s the corrupt, incompetent medical system viciously stealing your money, not the fact that diagnosis of disease is actually tricky business.


      1. Ummmmm.. Blah… the medical system in our country nowadays is Corrupt!!!! And what the hell do doctors go to medical school for if they are not able to use their darn degrees and actually diagnosis a disease in a proper manner without putting the patient through complete holy hell. I’m sorry.. but there’s a big problem with doctors nowadays… and it scares me!!

        Liked by 1 person

        1. Scares me too… and leaves me in debt. I still have no diagnosis, possibly cardiac syndrome x? I do not believe any of them listen or know… terrifying as I feel like I am continually having a heart attack 😦


        2. The problem is they have become so super specialized that they treat us in pieces. I finally went to a new doctor with a list & told her I only wanted to discuss conditions that would cause ALL of them because all the specialists for each of them just wanted to prescribe symptom maskers.

          Liked by 1 person

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  18. An absolutely gripping narrative. Thank you for telling it month by month in this way, as it really drives home the cumulative PERSONAL havoc that misdiagnosis can wreak on the day to day life of an otherwise healthy person. Health care providers often neglect this kind of trauma. I do hope that this woman finally gets appropriate treatment that will address these symptoms. Sadly, she will never get those lost years back.

    Her story is really about the failure of the medical system to know which simple Lyme Disease blood test to recommend, and then how to correctly interpret the test results. This article should be REQUIRED READING for all physicians, but especially those practicing in rural areas where wood ticks are common.

    Liked by 1 person

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