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Jon's Story

My name is Jon and I live in West Bend, Wisconsin. The following is a very abbreviated summary of my experience with Lyme Disease. My problems escalated in May 1997. I woke up one morning and had severe pain in my lower back. I never had any back problems before and didn't remember doing anything out of the ordinary that might have hurt my back.

I went to a chiropractor for the first time ever, and spent several weeks fighting back pain. In June I was still fighting back pain, and woke up early one morning with terrible pain on my right side; I also noticed that my left forearm and 3 fingers on my left hand were numb and tingling. The pain in my side felt like I had been hit in the kidney. The bottoms of my feet hurt and felt as if they were badly bruised. I also began getting very tired by early evening. I was really getting paranoid about entering my thirties, if this is what growing old was like.

In July, I went to the doctor and told him about my kidney and abdominal pains. He believed that I was experiencing intestinal pain and that I had I.B.S. He prescribed medication which was supposed to handle any intestinal cramping that might be occurring. The medication didn't seem to have any effect. I continued having other strange pains and problems. I was straining not to fall asleep during my one hour drive home from work. I pushed myself through each day with a lot of Tylenol and caffeine, and tried not to burden my wife and family with my problems.

In August the kidney pain continued and I was referred to a specialist. The specialist did a kidney x-ray and found no problems. I also began to have severe burning pain in my shoulder blade area that got worse and worse for about 10 days. It finally felt as if someone had held a blow torch on my back. The same type of pain began in my upper chest and got worse and worse just like the back pain. My face muscles began twitching about the same time and I experienced dizziness periodically. I also had pain in my knee, heel, and hip joints. I went back to the doctor and he told me that I might have Fibromyalgia, which can cause this type of pain. He told me to start a light exercise program. (At the time I was weightlifting 5 days a week and trying to jog about 4 miles a night. What more did he want??).

In September I was driving to work one morning and thought that my sunglasses were dirty because everything seemed blurry on one side. I cleaned them off and everything was still blurry. I took my sunglasses off and discovered that everything was still blurry. The vision in my left eye remained blurry for three weeks. At the same time one side of my face began to feel like the dentist had just frozen it. It was numb on and off and made speaking difficult at times. In the middle of the month I was watching a football game and began to have intense chest pain. At the same time, one side of my face began twitching and cramping, and then became numb again. I was taken to the hospital and was thoroughly checked for heart problems. My wife told the doctor about the many problems that I experienced in the previous months, so he decided to run some extensive tests. They didn't find any immediate serious heart problems and sent me home to wait for the other test results.

By late September I was a mess. I was extremely fatigued all of the time, I had facial paralysis, swollen joints, burning muscle pains, dizziness, blurry vision, neck pain, chest pain, twitching muscles, and headaches. I had made an appointment with a rheumatologist to see if he could figure why I had swelling joints. The soonest that I could see the rheumatologist was in early October. My wife called me at work the following Friday afternoon and said that my doctor's office had called. One of the tests that the hospital had done earlier had come back positive and the doctor called a prescription into the pharmacy. The hospital had run a Lyme test because of my recent plethora of problems. Lyme can cause carditis (inflammation of the heart), which may have explained my chest pain. I was overjoyed to hear that we finally found out what was causing all of my problems, but didn't know much about Lyme Disease. The prescription was for several weeks of antibiotics.

In October I finally got to see the rhuematologist for my joint pain. He received the lab reports for my Lyme test and evaluated me for Lyme and many other arthritic conditions. He told me that the Lyme should hopefully be knocked out by a few weeks of antibiotics and gave me anti-inflammatory drugs for the joint swelling. But as I was finishing the antibiotics, I seemed to be getting sicker. I had four days of terrible headaches, neck pain, sweats, and incredible fatigue. My doctor gave me another prescription for a different antibiotic. I was feeling worse as time went on.

I contacted the Lyme Foundation in Hartford Connecticut, and got a lot of helpful information. I discovered that treatments can range from several weeks for early stages of the disease, to a year or more for some people with later stage infections. I also discovered that some of the worst cases had crippled and disabled people. About 10 days after I had finished the antibiotics the facial paralysis returned. In late October I woke up one morning and noticed that my eyelids appeared to be drooping down over my eye. It looked as if my eyelid had almost swollen over my eye. This seemed to be an extension of the facial paralysis that had set in earlier, and a sign that I was not getting any better. I read that facial paralysis is a sign of cranial nerve involvement. This basically meant that the Lyme bacteria were starting to attack my brain. I decided that it was time to see a specialist.

I spent almost a month trying to find a Lyme specialist anywhere. I live within an hour or so of many huge medical facilities, but no one could refer me to a physician who specialized in Lyme Disease. I had my wife call some well known specialists on the east coast. Many had a several month waiting list, and some of the best were so booked that they weren't accepting new patients.

The Lyme Foundation helped with a physician referral list and I also got some help from the Wisconsin Lyme Resource Group. I chose a specialist that was 225 miles away and made an appointment. The specialist reviewed my case and asked what treatment I had been given so far. He stated that the antibiotic treatment I had been given was based on 10 year old treatment information. He started me on doxycycline immediately, and gave a detailed explanation about what I might expect.

I continued the treatment with doxycycline for several months. In early January I noticed some improvements from my treatment with the doxycycline. The severe joint pain in my heels had subsided and the facial numbness had improved. But in mid-January the symptoms returned with a vengeance. I had taken about 17 days of the antibiotic Cipro and discontinued the doxycycline during that time period. I experienced extreme joint and burning muscle pain all over, constant muscle twitching and spasms all over, incredible fatigue, sweats, nausea, dizziness, back pain, chest pain, neck pain, headaches, and kidney and abdominal pain. The doctor believed that it may have been a herx-like reaction (see "Treatments" page for a definition) to the Cipro, and was hoping that I would improve shortly if that was the case. I began taking the doxycycline again and did improve somewhat. But the doctor said that I might need I.V. antibiotics if I continued to do poorly.

In February I saw a rhuematologist who did more testing. He wanted to keep me on doxycycline for a few more months and evaluate whether or not I needed I.V. antibiotics to regain my health again. The joint swelling and pain somewhat subsided during March. In April, some of the problems such as the burning muscle pain, numbness and tingling, electric shooting nerve pains, and dizziness disappeared. The antibiotics had made a big difference over several months. In June I was still fighting some joint pain, muscle twitching, neck and back pain, and minor visual problems.

I switched from Doxycycline to Biaxin during the summer months. I experienced periodic return of the symptoms, but they were less severe than earlier ones that I experienced. In July and August some of the remaining symptoms began to improve. In November I had discontinued the antibiotics and amazingly, many of my problems returned. In December I started different antibiotic treatment and again saw improvement. It has now been a over one year since my diagnosis. I will update this periodically.

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