Graceannrose's Story
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Author:  Cog1st [ Mon Feb 18, 2008 11:19 pm ]
Post subject:  Graceannrose's Story

-"What you are experiencing is perfectly normal”
- "You absolutely do not have Lyme Disease." (with the kind of stern look and voice reserved for a particularly naughty child.)
- “There is no Lyme Disease in Missouri.”
- "You have stress-related trauma as a result of a tick-bite"
- '"I'd diagnose you with fibromyalgia but that would be too horrible" (my personal favorite.)

My symptoms continued after my initial antibiotic courses were finished. As a matter of fact, they worsened. Both doctors refused further antibiotic treatment and prescribed me anti-depressant medications. One told me we would 'get to the bottom of this'. The other told me that I should consider her my 'partner in wellness'.

I had no time to wait for the doctors to get to the bottom of things. I needed more than trite assurances that my doctors cared for me. I knew I was in big trouble. I knew the cause of my illness was physiological, not psychological. I felt bad enough to think I might even be dying. I had no choice other than to go looking for answers by myself.

Through research on the Internet I was able to find what is known as a 'Lyme literate' Medical Doctor in my state and I insisted on seeing him even though I was accused of 'doctor shopping'. I was diagnosed with Lyme-like illness in August 2006 and began a course of long-term antibiotic and supplemental therapies.
Graceannrose’s Lyme Story

I found an attached, engorged tick on the back of my left knee in May 2006. I had been camping near a local State Park in Missouri in the previous weeks. I believe I picked the tick up there but I'll never know for sure if my little ‘friend’ hitch-hiked home on my body, in my clothing or camping gear.

I found a raised, circular red rash on my knee before I found the tick and then afterwards I found one on my big toe. The insomnia that I had believed was due to stress, turned out to be the beginning of my symptoms. Even after two or three nights without sleep, I was often only able to take naps of a few minutes before waking again. When I did sleep for a slightly longer interval, I experienced violent, horrific nightmares filled with a strong sensation of evil and images of death. I would wake up sweating and exhausted as though a continuous current of electricity had been run through my brain.

In the first few weeks I felt like I had a flu. I was weak and shaky. I would get feverish in the evening but my temperature seemed to be normal. I felt tired all the time, not surprising considering the lack of sleep. I had a headache, but it was weird. It consisted of a constant 'buzzing sensation' that would flare up horribly if I exerted myself physically in any way. Then I would feel weak, dizzy and nauseous.

I was having sharp, painful muscle 'pings' and twitches throughout the day, and then strong twitches in my neck that would literally jerk me awake when I was on the brink of sleep. Or sometimes I would drift off, only to be woken up by 'electric shock' sensations that made the inside of my head feel like it was buzzing or vibrating.

Over the next few weeks, I started feeling a fatigue so profound that I could barely stand in the shower, and getting dressed felt like running a marathon. I did not have the appetite to eat or the strength to prepare food. I lost 15 lbs. In the mornings I was too exhausted to raise my arms above my head to dry my hair. I began wearing the same outfit to work all week. I became too tired to sit upright at my desk during the day and spent a lot of time lying on the bathroom floor. Towards the end of the work day I would make panicked phone calls to my mother, telling her that I was sure I did not have the strength to drive home. The noise and heat from traffic made me feel awful. I was afraid I might pass out while I was driving.

Later, I also had terrible pains in my chest, bad enough to where I was walking or rather, shuffling slowly, hunched over like an old lady. I would clutch the area at my heart, and was uncomfortable even sitting upright to eat dinner. I would feel like my heart was racing incredibly fast or slowing down and skipping beats. Every time a doctor listened, my heart sounded just fine however.

I began experiencing the worst anxiety and depression that I have ever felt in my life. My panic attacks would last two to three hours. Random negative thoughts would begin to race through my mind, spiralling out of control and making me believe at my lowest point that my life was no longer worth living.

I began having 'brain fog' on a daily basis. This is an almost indescribably awful feeling that I also thought of as 'brain freeze'. It is as though your brain has slowed down at its core like an overloaded computer. It is almost impossible to think and function properly in this state. I felt frustrated and confused. I wrote my name and address on a large piece of paper and kept it in my purse, thinking if I passed out somewhere at least people would know who I was. I wrote goodbye letters to friends and family in the first few weeks because I thought I might be dying.

I went to see two different doctors (my regular doctor first, then someone I went to see for a second opinion). I told them about the bite, the rash and my symptoms. These doctors were both willing to prescribe very low doses of antibiotics for a short length of time. Neither was willing to diagnose me with Lyme Disease because my Western blot from Quest Labs had come back negative.
I was told the following by these doctors:

- "This is not the kind of rash we worry about."

I now consider myself almost 100% recovered after ten months of treatment. My insomnia (the first and worst symptom) and the profound fatigue that knocked me out of commission for nearly one year have almost completely resolved.

The trauma of the illness, and of the ordeal that I went through trying to get help from the medical profession remains with me and I will probably never trust any doctor in the same way as I did before.

I consider myself extremely lucky that I was able to find the information I needed so that I could be treated relatively quickly. I believe that if I had listened to those first two doctors, I would still be sick, in pain and debilitated to this day.

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