| James Dement My Battle With...Chronic Illness |
| Hi there! Most of you know me. Or, at the very least, most of you have known me at some point or other in the past. I have been out of touch lately, hell for the last three years. I fire off an accasional email every now and then, hoping to just let everyone know that I am alive. Well, for the last couple of years I have NOT been alive. At least not the way that you think of life. I have not been alive the way that I always thought of life. I have battled for the past three years with chronic fatigue, cognitive problems, poor coordination, tingling and numbness, vision problems, joint and muscle pain, irritibility, and a total loss of interest in the things I used to love. I cannot read or watch a movie without an extreme effort of will to focus my concentration. So in fairness to everyone, here is my story. Here is my tale of quack doctors, my own misguided faith in the health care industry, and working for office nazis. I hope none of you ever have to experience the living hell that has been my life for the past two years. But it's a good story, because in the end there is good news. And in the end there is hope. Winter/Fall 2001-2002 I was living with my girlfriend, Robin, in Cartersville, GA (apparently the setting of "Big Momma's House", I never saw it, so I wouldn't know). I was working for Georgia Trane at the time, which was for the most part, very good. I did service and inspections on Building Automation Systems, which are control systems for Heating and Air Conditioning in office buildings, schools, hospitals, etc. I loved the work, no doubt about it. There is just a great feeling about fixing something that is broken, whether it is mechanical, electrical, or software related. The bad part about my job though, is that I got an incredible amount of windshield time. I would drive 600-1000 miles a week, all over North Georgia. That possibly wouldn't have been so bad, but a lot of the work I did was in Atlanta, which has horrible traffic. My job was very stressful, or at least I thought so. But hey, most people do. I wish I had back all of the money that I spent on Crown Royal during this time, I could probably retire. My typical day was something like leave home at 6-6:30AM, get home at 5-5:30PM, and then start making Crown & Cokes. On several occasions I would hit the door drinking, skip dinner, crash out, wake up the next morning, skip breakfast, and go on to work. Hell of a life, huh? I thought so too. I noticed several things during this time: 1) my balance was really off. I attributed this to drinking. Why else would I always be on the verge of falling over? 2) I was always tired. Was this because I drank too much? Probably. It's just getting harder to get over it, I thought. I began to come home once or twice a week and go to bed at 7PM, then sleep through until morning. 3) I was becoming more antisocial than I was before (if you can believe that). I didn't actually notice this so much as Robin pointed it out to me over and over. Girlfriends don't appreciate that kind of behavior, and hey, I can't blame then. This was my life for these months, and I dealt with the stress by drowning it in a bottle of Crown Royal. It wasn't so bad. What I remember of it. Spring/Summer 2002 Summertime in Georgia. Nothing like getting to work at 7:30 AM sweating. The week before Memorial Day I was driving from one job site to another when I noticed that my eyes were bothering me. I didn't think too much of it, I just paid more attention to driving. When I was about halfway to where I was going, I found myself closing one eye so that I could see the road clearly. I noticed that with one eye open, the center line would go one way (straight ahead) and with the other eye open the line would be at an angle. I got to the job, made a day of it, and headed toward home. I found that it was impossible to drive with both eyes open. I stopped in Norcross (still about 40 miles from home) and called Robin on the cell. I asked her to bring me my glasses, which she did. I put them on and started home, but they made no difference. I finished driving home with one eye open. This really freaked me out, so I went to the emergency room at Emory there in Cartersville. The doc told me that my eyes were just bad and I needed to get new glasses. I, being no idiot, told him that when your eyesight becomes poor, it happens gradually, not one day at noon. He didn't listen. I went to an opthalmologist a couple of days later. He was a very good doctor. He did numerous tests which basically concluded that I had diplopia (double vision) and nystagmus, which was my right eye shaking when I looked to the far right. That being done, he asked if I had a history of thyroid problems (I told him "no, you are the second doctor I have seen in my llife, the first being the idiot at the ER two days ago), or if I had been bitten by a tick lately, which I hadn't that I knew of. He sent me for a blood test to check my thyroid function and an MRI scan. The Saturday of Memorial Day weekend, he called me at home, at 8:00 PM. He said that my MRI showed lesions, which he described as scars, in the white matter of my brain and brain stem. He then asked if I knew what Multiple Sclerosis was, which of course I didn't. He explained it to me briefly, and then said I would need to see a neurologist. I thanked him for calling me on a holiday weekend to let me know what was going on, hung up the phone, told Robin and her parents what he said, and tried to digest it all with the help of some Canadian whiskey. I actually saw an optho-neurologist, who asked 1000 questions, did 1000 eye tests, and then informed me that I had possible/probable Multiple Sclerosis. MS cannot be diagnosed on one attack, so we would see if I ever had another attack. I went in for IV transfusions of SoluMedrol (steroids) for 5 days. In about six weeks my vision cleared up. I was out of work a total of two months. Thank goodness for LTD insurance. I did okay during this time. I can’t say I felt normal, but hell, I thought I had MS, so I didn’t expect to feel normal. Except for some occasional blurry vision, and ongoing fatigue and balance problems, I was doing pretty well. The Opthal-Neuro started me on Avonex, which is an intramuscular injection taken once a week. Just stab an inch-and-a-quarter long needle into a muscle once a week, and it ‘might’ keep you from getting worse as quickly. Avonex is an INTERFERON, which it is my understanding, gives your immune system something to attack besides the myelin, or coating of your nerves. The downside is that, well, it is expensive. Even with insurance, my portion of the bill was around $180 each month. Not bad if you have a $19/hour job, but a big chunk nonetheless. I read a lot about MS. More than I should have, I guess. I quit drinking altogether. I would have maybe one drink if it was a holiday. Every day just wasn’t a holiday anymore. I decided that living and working around Atlanta was too stressful. I started looking for another job. Winter 2002 I got a job in Peoria, Illinois, home of Caterpillar. They promised me less stress, and that I would be home more. Both were outright lies. I took a pay cut, to come to that job, and moved 500 or more miles from GA. I thought that I would get to see my parents more, which also didn’t exactly happen. Memorial Day, 2003 I was enjoying my holiday off. When I was taking a bath (we had no shower in the shithole we lived in), I noticed a spot on my right leg that felt….numb. When I touched it, it felt warm to my finger but cold to my leg. I would explain it better, but I can’t. I told my job that I needed to go see a doctor, but they had more important things for me to do. My leg just kept getting weaker and more numb, so finally one day I was supposed to drive 3 hours away to a job site, and I told them I couldn’t do it. I went to see an MD, who sent me to a neurologist, who gave me a course of prednisone (a steroid). My leg got better, but it was not quite the same. Winter 2003 Around November, I started to have PAIN. Muscle pain and joint pain, to be specific. By the new year, I would get up in the morning feeling like a 90 year old man with arthritis. I went to the neurologist, and another MD, both of which looked at me like I was an idiot. They never said it, but the look always said “of course you have pain, you have MS, stupid”. I stopped taking my Avonex shot, because it made me feel like I was dying. I hope none of you know what that feels like. February 2004 I had been doing a lot of research on the internet. What else are you supposed to do when you feel like you are dying? I worked everyday through pain, sometimes mild, sometimes excruciating. It was a very dark time for me…watching my life unravel. I stood to lose everything at the rate I was going. That’s when I stumbled onto Lyme Disease. I read, and I read, and I read. I thought I was finally onto something. And it turns out that I was. I started reading a lot on the message board www.lymenet.org and learned more than I ever wanted to know about LD. But I DID want to know. I made an appointment with a Lyme-Literate doctor in Springfield, MO. He did three tests that day; a Western Blot test for Lyme Disease, a ISAC panel (a hypercoagulation test), and a 24 hour endocrine panel (i.e., pee into this bottle for 24 hours and then send it to this lab….whoopie!). My Western Blot was very positive, even by CDC standards. The IGM Western blot showed only one equivocal band, but the IGG was very positive. All I know for sure is that I have had it for at least a month before the test was taken. From what I have read and my own personal recollection of my health, I am guessing that I have had Lyme Disease for 10 years or more. Your immune system can fight it for a long time, depending on how strong your immune system is. I also had hypercoagulation, and various abnormal hormone levels. Lyme Disease is often misdiagnosed as Lupus, Rheumatoid Arthritis, Fibromyalgia (Fibrositis), Chronic Fatigue Syndrome, and Multiple Sclerosis. It is sometimes found to be the cause of ALS (Lou Gherig’s Disease), and other illnesses. Lyme Disease can cause over 100 different symptoms, but the top 4 are: 1. Chronic Fatigue 2. Neurological Problems 3. Musculoskeletal pain 4. Heart problems Borellia Burgdeferi (the lyme bacteria) is a bacteria that lives in your body, and can affect any tissues and organs in your body. WHY STEROIDS ARE HARMFUL TO PEOPLE WITH LYME Steroids, which are commonly given to Lupus and MS patients, drive the Lyme bacteria out of the bloodstream and into body tissues, such as muscle and joint tissue. While they make the patient feel better in the short run, they are actually doing more harm than good. Lyme disease is treated with antibiotics, to kill the offending bacteria. I could write a lot about this, but it would take a few days, perhaps I will add it in later. As the antibiotics kill the Lyme bacteria, the bacteria release toxins into the bloodstream. Eventually, this makes the patient feel worse, and is called a Jarisch-Herxheimer reaction, known as a Herx for short. So far, I have a Herx about every two weeks. A Herx is a worsening of symptoms. When a Herx occurs, I stop taking the antibiotics until I feel better, which is usually about four days. Overall, I am feeling better. It is a slow process. My joint pain has pretty much gone away, and my muscle pain is only present when I am Herxing. I will expand on some of these topics later, when I have more time. I am not saying that Lupus, MS, etc. do not exist. But I am saying that doctors are sometimes wrong. When they are wrong about something this important, it hurts. It hurts the patient, it hurts their family. I feel that perhaps I am on the road to recovery…perhaps I will lead a normal life again…perhaps I will beat all of these things. Perhaps someone will read this and it will help them, too. Links: www.lymenet.org www.ilads.org www.geocities.com/lymeart3/ms-index.html |
| This many unfortunate souls have seen this page |
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