My Lyme Story (Each one of us has a story)     Let me start off here by rienforcing that this is my story.  Every Lyme story is different and the disease affects everyone uniquely.  However, as we "lymies" know, there are many similarities that can be found among us.  Asking a Lyme patient to tell the story of their illness in 100 words or less is like trying to sell shampoo to Kojak - it is next to impossible.  That is why any knowledgeable doctor will spend at least an hour and wear out several pencils attempting to take a patient history.  I will try to give a relatively concise version but get comfortable anyway.

My Lyme story began in September 1996 when I noticed a strange rash on my ankle.  I was very active back then and spent my summers mostly outdoors.  I thought nothing of the rash at first, but it started to spread up my leg.  I decided to see my doctor not because it was itchy or painful - it wasn't, but because it looked pretty ugly when I wore shorts!  The doctor didn't seem to know what it was and tried a few medications that did not work.  She sent me to the dermatologist to get it checked out.  He also looked slightly perplexed.  He proceeded to prescribe several creams and said that if they didn't work that maybe he would do a biopsy.  Well, the creams didn't work but the rash eventually disappeared.  Wouldn't it be nice if the story ended here?  Anyway, I started to feel somewhat run down in December 1996.  I thought the office flu was finally getting to me, but I continued to go to work - no big deal.  I also started having mild bouts of dizziness, which I had never really experienced before in my life.  I started to have moments where I would feel very strange.  I use the word strange for lack of a better word.  For many Lyme patients, the words "strange" and "wierd" become consistent parts of our vocabulary.  I was getting extremely run down so I broke down and decided to see my doctor.  She told me that it was probaby just the flu and took a  strep test, which was positive.  I was put on oral antibiotics and sent on my way.  Can you tell where this is going?  I'm sure that you can.

In January 1997, I was at work and still sick.  We can all remember with great fondness and accuracy the last time that we felt normal.  That day at work, I suddenly felt my neck stiffen and I was having a hard time holding my head up.  It was such a strange feeling - there's that word again.   I tried to get up to go to the break room for some water and I collapsed.  I was so dizzy that I could not even move my eyes.  My legs were weak and I was absolutely petrified.  I was taken to a local emergency room where they were very busy.  The doctor took a quick look at me, ruled out pregnancy and said that it was probably just an ear infection (he never even looked in my ears).  He gave me huge doses of Antivert and Benadryl and sent me home.  Over the next two days, I laid in my apartment in a total fog.  I could barely move and had extreme vertigo.  My mother took me back to my doctor who was shocked when she saw me.  Not the reaction I was looking for.  She found no evidence of an ear infection and said that I should have an MRI of the brain and come back in two days to have it read.  I didn't think that I could last two more minutes, let alone two days.  I had the MRI - holy claustrophobia - and went to my parent's house.  I became worse that night.  I couldn't feel my left side and was slurring my speech.  I was still extremely dizzy.  I was taken to a different hospital and was admitted.  The doctor suspected meningitis and said that he wanted to do a spinal tap.  I would have let them saw me in half if they would just make me feel better.  I was in the hospital for about a week, during which time I had every test imaginable.  I was put on IV steroids and sent home with a diagnosis of vasculitis (inflammation of the blood vessels around the brain).  All other tests so far were negative - Multiple Sclerosis, Lupus, etc...  Still very sick, I went home.  About a week later I got the call.  No- not the psychic friends network or Ed McMahon (although that would have been nice).  It was the neurologist saying that my Lyme test came back positive in my blood and spinal fluid.  Okay- get ready to chuckle - I was so relieved!  I finally knew what was wrong with me, and from what I knew about Lyme Disease, you pop a few pills and off you go.  I told my job that I would be back in a couple of weeks - tops.  The neurologist said that he thought I should be treated by an infectious disease doctor with IV antibiotics because it was in my central nervous system.  All right, a little scary but no big deal - right?  I went to the recommended doctor in my area.  He even advertises as being a "Lyme specialist".  He tested me for other tick-borne ailments and told me that I tested positive for exposure to Rocky Mountain Spotted Fever also.  He gave me a week of oral doxycycline for that and decided to put me on oral amoxicillin for the Lyme -(mistake!)  When my mother asked him why not an IV, he said, "Do you have any idea how much an IV costs?"  One thing about this doctor - he had the bedside manner of Dr. Kavorkian and always rushed out without answering my questions (light bulb - run, don't walk to the nearest exit!)  Well, I stuck with him because I didn't know then what I know now.  My symptoms are way too numerous to list and they change often, but the main ones are headaches, dizziness, numbness, cardiac problems, sensitivity to light and noise, shooting pains, heaviness/weakness, head pressure, and fatigue.

So I was on oral medications for a few weeks with not much real progress, but I was a go-getter.  I decided to try and go back to work.  I had to get a ride because I was too dizzy to drive.  Guess what?  Four hours at work and I was falling off of my chair.  Two days later I was back in the hospital.  This time for ten days.  I was sicker than ever and the doctor finally agreed that I needed IV Rocephin.  That was the period of time that I not so affectionately call "hell".  I was also put on heart medication to alleviate my tachycardia (fast heart rate) and irregular beat.  I had some improvement  over the next twenty-eight days.  Hey, twenty-eight days is the magic number.  I'm sure that it rings a bell with many of you.  My doctor said that I should be well after twenty-eight days or there was something else wrong with me - maybe psychological problems.  Well - Bellvue here I come because I was still pretty sick.  I went for a second opinion to a Lyme clinic and I got that look - remember it.  They agreed that twenty-eight days was enough.  Of course I doubted myself.  It is only natural to feel that maybe you are crazy, but you are not, you have to listen to your body.  Well, five weeks later I was back in a wheelchair and unable to move again.  I started to take control for myself.  I began to do some research and talk to other Lyme patients.  Amazingly enough, they all had similar stories.  You too?  I'm not surprised.  Either we are all crazy inventors of a similar imaginary illness or something is lacking in the understanding of this disease.  I found a doctor who was recommended by a Lyme researcher and other patients too.  By this time I had seen two internists, two infectious disease doctors, a rhumetologist, two neurologists, and a partridge in a pear tree!  None of them could agree on what to do for me.  I have been on several medications since then, some have helped more than others.  When I go off, I seem to backslide.  I have made some progess, but it is so slow that I have to measure it in years, not days or weeks.  It goes up and down.  Unfortunately, the choices are limited but I am determined to get my life back.  

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