the woman

Back in the fall of 1998 I was traveling across the US, and for some time I stopped in southern Indiana to go on a canoe trip. While camping along the river I had gotten many, many bug bites, I couldn't even count them all. Just a couple of weeks after the canoe trip little by little I found my energy being drained. Then I developed this cold, one that just would not go away. I got back home to the west coast in January 1999 and started a job, but after a month or so I started being physically ill in the mornings. It started off once, twice a week... but over time it increased and in just a couple of months every morning I woke up I was dealing with morning sickness. The cold symptoms graduated to constant flu like symptoms. In six months because of 60 hour work weeks and the intense stress... on top of being constantly ill... I was taken to the hospital in an ambulance after choking up some blood.

It started a summer of intense, painful tests and treatments. I had x-rays, blood work, minor operations... (I don't know the name of the tests, they were quiet painful and intrusive though... since vomiting was one of my main symptoms the doctors checked everything they could about the stomach and the digestive track.) The tests all came back negative so I was given a horrid course of pills that was supposed to combat nausea. The next round of tests checked my head for brain tumors or anything of the like... which came back negative as well.

By the time August of 99 rolled around I was dealing with a multitude of symptoms:

stiff and achy joints (which sometimes is so bad I can hardly move some parts of my body)
general malaise
rashes that can itch and burn, or sometimes have no feeling to them at all
muscle weakness
shaking
severe fatigue
nausea
vomiting
sore throats (every morning due to the continual vomiting)
a sore rib area (also due to vomiting)
severe behavioral changes and mood swings that I could not explain
difficulty concentrating
irregular sleeping habits
dizziness
fainting
headaches and stiff necks
difficulty breathing
difficulty with motor skill function
confusion
fevers
cold sweats
hot flashes
abnormal appetite (there are times when I cannot keep down even water, and I no longer get the feeling of being hungry)

There is a basic article at the webmd site that explains a rough outline of Lyme's... If you go, scan until you hit the symptoms part. It shows "early" symptoms... "early disseminated" symptoms then "late" symptoms. Those are the stages of lyme's.. and I mirrored perfectly in the progression with nearly all of those symptoms ...and more.

When I brought a list of all the symptoms I was going through he chose to ignore everything else and still only treat me for stomach problems. I had then tried to explain what I had seen on my thigh, the bite, the rash... how my symptoms showed up after that. The doctor laughed and said it wasn't possible. It was like he couldn't believe it, or wouldn't. I finally got so upset with this man that I began to realize that at least for right now, my health would be in my own hands. I armed myself with as much knowledge as I could to fight this on my own.

By this time I had lost over 100 pounds from not being able to eat, I was put into hospital many times over the summer just to be fed nutrients through an IV... every day was filled with pain and confusion. I hated the feeling of fighting not only my body but also my doctor. On my last stay at the hospital in 1999 one night a nurse walked into my room and handed me a large turquoise pill and a glass of water. I asked what it was and she simply replied, "A sleeping pill, this will help you rest comfortably."

I found out days later that the pills were anti-depressants. My doctor had finally just given up on me and called me depressed, saying this illness was in my head. I was fuming... and after only four days of the pills I tossed them out. I knew my body... there was something physically wrong... and I knew it wasn't in my head. On the next trip to the doctor my mother actually went with me, and dumped all the pills that I had been prescribed over a period of just a couple of months on the examining table. (At one point I had counted, I was taking 21 pills a day - I think it's no wonder that my stomach was so upset!) My mother can be forceful when she wants to be, and demanded that I get put on antibiotics. We had read about the courses of A/Bs for lyme's and basically ended up asking, "What can it hurt?" I don't know how, but I was put on doxycycline, one of the most common antibiotics for treatment of early lyme's. I believe also at one point I was tried on tetracycline, but I'm not sure anymore. It was a long time ago and I was very drugged.

For the first time in over eight months I finally started to see some improvement. After months of constant vomiting... my stomach settled down, my throat was able to heal... I was able to put some food in my body and have it stay there. I found out ways to help my muscle and joint pain (glucosamine pills and exercise mainly) and had to learn how to recognize the confusion and mood swings for what they were so I could get past them. I used antiseptic cream on my rashes which helped them heal up a little. I also had to work on my motor skills again, and get my strength back up. I felt like I was on a self course of physical therapy. Beyond the doctor prescribing pills, he would do nothing for me. I figured out all of these things on my own. Which is why I left his care. The final straw was when he told me to go back to work, and I had to quit a couple of days later unable to keep up with it. I don't think any words can do justice to how angry I feel about this doctor and the way he treated me.

So without work and with my parents' support I concentrated on my body solely. I was 18, almost 19... with what seemed like every ounce of dignity stripped from my soul. It was a very, very slow path to what I thought then was recovery.... and I worked hard at taking care of myself. I even had a few rare instances where I felt well enough to go hiking a bit and live something of a normal life. When I felt well, I jumped on the chances I had to go out, to socialize... because they were so few and far in between.

I had also tried to find another job, something that could work with me instead against me. I couldn't find anything I was able to keep up with, not even an occasional babysitting job. There were some things that just never went away - I lived daily with aches, headaches, strange sleeping habits, low energy, and an abnormal appetite. I was living moment by moment. I could only tell how the day would be when I woke up. Yet still I thought this was recovery. I guess I had accepted this as the way life was going to be.

After a few more months of the more harsh symptoms being somewhat calm (which brings this story into the spring of this year), they started to very gradually sneak back up again until I felt like I was in another full blown attack. I sought the help of a local doctor, who proved to be no better than the first. My insurance had run out shortly after I left the first primary doctor's care. I am not married, cannot hold up a job... it's a heavy reality for a young woman. All this doctor seems to do is prescribe pills, still all aimed at fixing my digestive system.

One thing, the doctor also saw in my records how I had responded to the doxycycline a while ago and put me back on a two week course of those. Once again I made it back from the "edge" of illness to try to start out the summer right... and I am now still, as fall opens up, trying to regain control of my health. Still I deal with constant joint pain (especially my knees, fingers, wrists, neck and parts of my back), an abnormal apetite, headaches, no energy, confusion (not just the "what was I saying?" but serious confusion as to what I am doing), fainting, stomach burn, and more... Honestly, I am still very afraid of my own body and what it may do next.

This doctor in town has finally told me, that he cannot do anything for me. He gives up, and will give me a referral to go somewhere else. He told me to apply for state assistance, since I cannot keep a job.

I have felt the verge of death. That may seem drastic, but I could feel my body breaking down day after day, each morning waking up to more pain than the day before. It was the scariest thing in the world. I will not be brought back to that again. And thankfull now, I won't have to be. After much searching, I finally found a lyme specialist. He lives in Canada, about two hours north of me. Just seeing him, and having a physician's diagnosis for lyme has made a world of difference. He is helping me get on track, is ordering the right tests and is seeing that I get on the right antibiotics. I should be starting them before the new year. Amazing what happens when you see a doctor who actually knows what he is talking about.

This whole experience has helped me gain a new appreciation for life. What I went through, heck what I am still going through... is more than I ever thought I could bear honestly. But somehow, I keep trucking on. Somehow, I am able to get out of bed. Somehow, I am able to kneel at John's feet. Blessings sometimes come in the smallest of packages, to be able to look at just a single breath and say, "thank you for that" is, to me, a great gift. To be among the company of dear friends, be they an email, a short drive, or a phone call away, is treasure beyond compare.

To look into my Master's eyes and see myself rested there carefully guarded by his soul... is priceless. I have great purpose to rise each and every day, if just to look into his eyes.