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Nancy's Story

I have thought for a long time about writing my Lyme story, but something kept holding me back. I thought for certain the first major attack was over and that surely I would stay well. Unfortunately that's not how it happened. Hopefully by all of us sharing our stories, someone who is searching for answers will find them like we (the Lymies) did, and take heart that they are not alone.

In June 1995 my daughter graduated high school; what a wonderful time in our family. We had moved to our new home in Sussex County, Delaware, in the woods, just a couple of years before. How I loved the woods, the deer, the ducks, the geese, the pond -- beauty and serenity everywhere. Life was good. We were building a screen porch, I had returned to college to work on my associate degree in Human Services. When I reflect back on those days, it amazes me how this disease has crept into so many areas of our lives. My daughter had been sick in May and been tested postive for mono.

She was really struggling with fatigue and general achiness, sore throat, etc. Around the same time I was getting ready for my evening shower and found a tick on my abdomen -- attached. I removed it and put it in a plastic bag, just in case. I had no symptoms at that time, but did have a bull's eye red rash at the site. The next morning the rash had spread and the area was hot to the touch. Still no symptoms, but I called my family doctor. She looked at it and said it could be Lyme and that since the tests took a while to come back, she was going to give me the standard course of treatment of doxycycline for 10 days.

She threw the tick in the hazardous waste container and off I went. I took my doxy and thought, thank goodness I was on top of it and got treated fast. I had read an article and knew I didn't want Lyme disease. Unfortunately, it was about 6 or 8 weeks later, while I was in college and busy at work, when symptoms of horrible fatigue, joint pain, achiness, and eye twitching started to hit me. I blamed the tendinitis on my job, the muscles on my weight and sedentary job, and surely I must have mono with this ungodly fatigue.

I have never been so weak. Unless one has experienced Lyme fatigue, it just can't really be put into words, other than that I felt like my life force was being drained out of me, and that this must be what dying felt like. After multiple visits to the family dr. for these symptoms, she referred me to an infectious disease doctor. The soonest I could be seen was 6 weeks. Of course 10 days before I was to see the new doctor I was feeling much better, which confirmed my thoughts that this must have been mono or some kind of virus that ran its course. The doctor's office said since I was better there was no need to come in.

1996 - The next stage seemed to hit; horrible muscle weakness, tendinitis in my right wrist and elbow. Then, tendinitis in my shoulder. Physical therapy, anti-inflamatory meds, cortisone shots; no major relief. Finally, in June 1997 (after the orthopedic doctor had asked me three times,"You have had the Lyme test and Lupus test, right?"), I kept telling him that I had been tested two or three times in blood work, and it came back negative everytime. By June 1997 the tendinitis was so severe in my right elbow and rotator cuff, that surgery was the only option left. I said no, not till I finished college in August.

That summer I got on the internet and researched Lyme disease, since the orthopedic doctor kept bringing the subject up. I found out how unreliable the blood work can be, especially if you've had cortisone. I saw another person in the chatroom talking about a LUAT. I found out that it tests for Lyme antigens in the urine. I went 50 miles north to a bigger area and found an infectious disease doctor to discuss the last two years worth of problems, expecting the usual: it's depression, it's stress, it's your weight, it's aging (I'm 44), the excuse dujour. Thank you Lord, that you answered my prayers and I had found a specialist who really listens and evaluates the whole picture. He ran the LUAT and several blood tests.

All blood work was negative: Lyme titers, Western blot,and the Lupus and Rheumatoid tests. But, the LUAT was positive. Finally I was vindicated. But now what? He put me on oral doxycylcine for 2 months; no relief, then went to 30 days IV of rocephin by PICC line, which actually made these symptoms flare. Now I had burning nerve endings in my feet, followed by another 4 months of doxy. I finally had relief by December 1997. YEAH, I was cured! I had my muscle strength back, no more tendinitis, no problems in any of my joints, no burning in my toes and feet.

April 1998, I noticed some of the symptoms seeming to return. I tried hard to ignore it and just believed it was overuse, the weather, anything but Lyme. I had beaten it, right? The weakness in the muscles got so bad I was afraid I had MS. Then the word thing was happening; trouble coming up with simple words, trouble remembering names, all those weird unexplainable symptoms -- the eye twitching for about a month everyday which just about drove me nuts.

June '98, I was in Exton, PA for a week long training in Reality Therapy, and got horribly sick on the the second day there; 103 fever, uncontrolled diarreah, had to have family come get me, went to the doctor got meds, no help, ended up in ER getting IV for dehydration. All lab work was negative, but now looking back I wonder if the 6 days of that were actually related to a relapse of the Lyme or reinfection. By the Winter of 1998 I finally gave in and went back to my infectious disease doctor. He ran the LUAT and this time it was twice as high as the original test in '97.

Don't ask me what that means. I don't think I want to know. I went back on oral antibiotics in January '99 and stayed on them for four months, then IV rocephin again which I just finished June 4th. Now it's back on oral Vantin, which has hurt my stomach, so I've stopped for a while. I seemed to be having so many more cognitive problems this time: forgetfulness, unable to concentrate and stay focused, easily distracted, more anger, can't come up with the little three letter words, switch words, transpose letters when hand writing. I was sent to a neurologist. He ordered an MRI, sleep lab study, and neuropsych exam. The MRI was clear, mild to moderate sleep apnea, given one of the machines to keep airway open.

The neuropsych shows no problems with cognition, or learning, or IQ. I asked the doctor if that's the case why can't I recall three letter words, etc. No real answer. MMPI (personality test) shows somatoform disorder (I seek medical answers for my psychological problems according to the test results), which I knew would happen if I answered the questions honestly due to the nature of the physical symptoms of Lyme, that I've had over the last 4 years. Of course the fact that I've been in counseling for childhood sexual abuse, depression, and anxiety, made that diagnosis seem obvious.

I can't imagine why anyone who has battled this stinking disease would be depressed, anxious or angry. Surely most people love taking antibiotics for years, battling yeast overgrowth, stomach problems, not to mention unrelenting Lyme symptoms. Thank God again, that I have a wonderful counselor who understands the physical problems of Lyme and a psychiatrist who does my meds for the depression, who knows about Lyme as well. They have been wonderful support during this time.

My family has been very strong through most of this, but of course, like me they have their times wishing it was all a dream we would wake up from. The physical problems seem to have been greatly helped this time by the IV and I am hopeful for continued healing. I have continued to work full time as an employment counselor and managed to finish the associate degree. I really want to do the bachelor program, but I am concentrating my energy on wellness right now. I still struggle with wanting to sell and move, and not because the woods has also been a healing place for me.

I just want to reassure anyone reading this that you are not alone. However, with the current conflict in the medical community and insurance industry regarding Lyme disease, you MUST advocate for your health. No one else will. I pray for continued research for Lyme disease, for accurate testing, a way to kill the bacteria for good, good insurance coverage, a more informed medical community, and doctors who listen and care.

Nancy Brown (a/k/a Liz)

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