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:

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

  1. Thank you for sharing this, my son also had a Lyme test that was negative but continued to suffer with swollen painful joints throughout his childhood, we got the same comments from doctors! It’s growing pains!

    I realized doctors know so little, and had to become my own researcher! I hope you and your son are doing well.

    Like

  2. Have the doctor check u for Wolff-Parkinson-White syndrome. My heart speeded a lot and they could not figure out why all my tests came back fine. I’ve had a speeding heart since I was 16, they blamed it on anxiety. When I turned 35 they found WPW. Hope u find out what’s wrong with u and sorry u have to experience all that.

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  3. Note from Carolyn: this comment has been removed because it was trying to reach my blog readers in order to sell you something. For more details on this policy, read my site’s disclaimer page.

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  4. I read this story about a year ago when I was going through something similar. After 6 weeks of similar efforts to many specialists and spending thousands of dollars, mine also turned out to be Lyme. I also had an initial negative ELISA test.

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  5. It’s a shame the medical health care community doesn’t go through extensive tick training. Most doctors believe so many misconceptions, and not relying on new information learned, but facts from 10 years ago!!! They don’t recognize basic tick symptoms. A waste of money in our health care system. They should start there always! Then the other tests!

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  6. How would I get in contact with the women that experienced these awful things? I have a few questions as I think I have the same problem for years now and the docs think I am a nut case as nothing can be found. But I do recall being bitten by a tick years ago and had a bulls eye rash. Unfortunately didn’t go to the docs while I had the rash and had the simple ELIZA test come back negative. Hope you are doing well? Does it get better once confirmed and treated?

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    1. Hi Sammy – in case Christine (whose story this is) misses your comment here, please read her reply below (on December 7th) for an update on how she’s doing now… Best of luck to you…

      Liked by 1 person

  7. This is me 100%. I’ve had Lyme but it was negative 5 years ago. Was bit by a tick when I was little maybe 10. I’ve been suffering and have too been told I have panic disorder. I wake out of a dead sleep with racing heart. Shaking. They come in episodes. I have had every cardiac test ruled out as well. All come back healthy and normal. I am vouching for myself and getting re-checked for Lyme.
    Thanks you for this documentation. I’m so happy you got an answer. How are you doing now? Did you get treatment?

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  8. This story is almost exactly like mine. So many tests, so many diagnoses. I thought what I’m sure all the doctors thought, it’s all in my head.
    I’m going to ask my doctor for that test.
    Thanks so much for getting your story out. I thought that I was alone.

    Liked by 1 person

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