Lyme Disease

Given that most of us are avid outdoorsmen, I thought this was worth passing on.   The overwhelming majority of folks with Lyme disease have no idea what they have, and many times end up with a false diagnosis of Fibromyalgia, or no diagnosis at all.  Now that I finally have a diagnosis of advanced Lyme disease (about 4 months now), I’ve ran across two people with similar symptoms, who as it turns out, also have Lyme disease.   Lyme disease is showing up in more and more people every year.   The Milwaukee Journal recently ran a story about this on the front page.   Lyme disease is misunderstood by most physicians, and the standard test for Lyme disease is only accurate around 60% of the time.   Here is how it started for me…. About 4 years ago I began to have aches and pains in weird places – shooting pains in the back of my head, shin, and forearm.   This went on for a year or so.  Nobody could figure out what it was, so I just dealt with it.  My primary care physician gave me an Elisa Lyme test.  It showed no Lyme infection, so he told me to take Advil when it got too bad.   Over the next year my ears began to ring, and my joints (hips, elbows, knees) began to hurt.  I went to a Neurologist, and a Rheumatoid doctor, they also gave me an Elisa Lyme test, which again turned out negative.  By this time, I was beginning to realize that something was seriously wrong with me, only nobody could find it.  I was tired with limited energy most days.   I had MRI’s and Cscans, arthritis tests, MS tests, and a dozen others that I can't recall – no one could find a darn thing wrong with me.   Slowly but surely, in addition to the symptoms noted above, new symptoms showed up steadily for the next two years.  I began to have GI problems coupled with chest pain.  I went through all sorts of GI tests from an upper GI endoscopy, to a test for esophagitis, to esophageal spasms.  All turned up negative.  Then my heart began to beat erratically, and I underwent a nuclear stress test.  Again, nobody could find a darn thing wrong with me.   Then this past Summer, things got so bad that I would get turned around in the town where I live, and had a hard time remembering how to get to my house, I was easily confused.  I felt like I was walking around in a daze.  I had a hard time thinking, and it became difficult to get out of bed.   The worst symptom I had was a feeling of anxiety in my chest.  Not sure how to describe it – I felt like I was going on trial for Capital Murder the next day.   It was just plain horrible.   It came to head when I was driving with my wife and kids (in the town that I live in), and I went the wrong way down a one way street.  Thank heavens nobody was coming. My wife talked me into going to Mayo - somebody had to be able to figure out what was wrong with me.     I ended up confiding in a coworker that I was going to take a leave of absence, and was going to Mayo to see if they could figure out what was wrong with me.  I was beyond desperate at this point.  I truly thought I was dying.  I hurt absolutely everywhere, my BP  was 150 over 110, I was anxious all the time.   Thank the lord my co-worker had some experience with Lyme, and pointed me to the right doctor.  I was skeptical because I had already tested negative for Lyme 3 times by 3 different doctors. Even though I was skeptical, I made the appointment.  The Lyme doctor gave me a CD57 test, which is an extremely effective test for Lyme disease.   The doctor explained that the Lyme test that is typically given by a general MD is extremely inaccurate, and should not be relied upon when a negative diagnosis is given. At any rate, the CD57 test works like this:   A level of less than 20 will put you in a wheelchair, a level of 20 to 60 is an extremely active infection, 60 to 150 represents  a Lyme infection, and anything above 200 is considered normal.  I had a 42.  I can’t even imagine the poor guy who has less than 20. I’ve been on Doxycycline for 3.5 months now and am slowly recovering.   Here is the really crazy part.  After I received a Lyme diagnosis I happened to see my cousin camping, who I do not see frequently.  Before he sat down to the campfire he started stretching, then began to tell me how bad he hurts.  After I listened, I told him to go see a Lyme specialist, his symptoms were spot on with mine.  Oddly enough, as it turns out, he had Lyme disease too.  Then while working with an outside contractor at work, one of the guys was telling me about his sudden aches and pains.  They were not spot on with mine, but pretty close.  He also ended up with a diagnosis of Lyme.  Both my cousin and the contractor had been tested previously for Lyme and tested negative.   I figure, as many of us on this site who spend a considerable time outdoors, I can’t be the only one, and thought I would share what I know.  Lyme manifests itself in so many different ways.  I don’t ever recall being bit by a tick, I never had a bullseye rash, I just started to get symptoms.   I can't tell you how awesome it was to finally get a definitive diagnosis.