I think this story section is a wonderful idea- I found the life stories in Henry Scammell’s book tremendously inspiring and comforting, and read them over and over during my first months on the antibiotic protocol. Then I became a “story” myself, and didn’t need them anymore! Anyway, here’s an attempt to tell mine. I hope it can be of some help to someone. — My story stretches back 28 years. I was a young, healthy graduate student, newly married and happy, when I began to have trouble with recurrent fevers, progressively higher and more debilitating, over several months. Finally there were several days when my temperature went up to 105, and I was really sick and scared. A stay at a prestigious Boston diagnostic clinic gave no answers, and the fevers gradually subsided. At no time was I given any medicine but aspirin- they couldn’t find the culprit, and refused to give me anything like an antibiotic. A couple of months later, the arthritis started. In the years to come, I would tell every doctor I went to about the fevers, and the response was something like, “yes, isn’t that interesting, some people start off that way….” Nothing more. My knees were the first to be seriously involved, and became grossly hot and swollen. Soon fingers and toes turned into “sausages”; wrists, ankles, elbows, jaw, and neck followed. I was given all the usual NSAIDS, first huge doses of aspirin, then indocin, etc., etc., and some of them helped a little, for a while, but all lost effectiveness soon, and whenever I stopped one I was much worse off than before. The doctors never gave me a sense of any long-term outlook, all they seemed to pay attention to was immediate effects. I was given a diagnosis of psoriatic arthritis- I had a small amount of psoriasis on my elbows, and the rheumatoid factor was negative. I was scared when the first real rheumatologist I went to told me I would probably be in a wheelchair by the time I was 30, but all he did was give me more NSAIDS, and I didn’t know any better. I don’t know why I wasn’t given any of the more serious drugs like gold or methotrexate- I suspect the doctors I saw thought of psoriatic arthritis as not as serious a disease as rheumatoid. My knees were so swollen that walking was difficult and they couldn’t bend enough to sit well, elbows had very little range of motion left, fingers were useless, feet felt like I was walking on broken glass. Somehow, I made it through school, but my marriage suffered, and finally my wife gave up and left. I had surgery four times on my knees. The first three did not have lasting effect, except in removing damaged cartilage- the inflammation just came back. The fourth knee surgery was the big one. I was sent to a famous surgeon in NYC, who did a total synovectomy on my left knee, removing all the joint lining. I came within minutes of dying after the surgery because of a mistake- they put me immediately on a machine that continuously flexes the knee to prevent scar tissue formation. The surgery had not solved the worst problem which was inflammation and damage around a nerve bundle, and the machine caused so much pain that the doctors drugged me to unconsciousness. Then another doctor came to look, and decided I needed more morphine, giving me an overdose that put me in a coma. Apparently I would have died of classic narcotic overdose, but a nurse who had just been transferred from a drug addiction ward saw me and immediately sounded the alarm and my heart was restarted. Recovery from that surgery was terribly slow and hard, but there was one good effect- my arthritis, in all other joints, got much better for several months! I had been on intravenous antibiotics for about ten days…. It took a year to get back to walking reasonably well with that knee, and for fifteen years afterward I would wake up in the night paralyzed with pain- the knee would get stuck when I didn’t move it for a while, and getting it unstuck would leave me drenched with sweat and shaking with pain and fear. By that time I couldn’t take the more powerful NSAIDS, they all made me dizzy, spacey and nauseous. When I returned to the famous surgeon and complained about how badly the knee was doing, he told me I wasn’t giving his surgery a proper chance to work, and I needed to not be so “fussy” about taking drugs! I never went to see him again. Meanwhile, I found a new doctor at home, an internist and a good man who has been very helpful. He referred me to a psoriatic arthritis specialist in NYC who told me he was amazed I had been treated so “aggressively” surgically, but so conservatively in terms of drugs. He said psoriatic arthritis can be as serious as rheumatoid. He offered me three choices, sulfasalazine, methotrexate or gold, and patiently explained the advantages and drawbacks of each. I tried the least dangerous, sulfasalazine (which, by the way, is a combination of an old-fashioned sulfa antibiotic and an aspirin-like salicylate). I was lucky- I responded very well. Similar to AP, it took about six months before I could clearly see improvement, but over the next two years I got better and better. I wasn’t exhausted all the time, I could walk well. I was able to accept an invitation to go on sabbatical to work at a laboratory in Germany for a year, which I never would have been able to consider before. I even went skiing in the Alps that winter, a crazy thing to do with my knees, but I was so happy! I came home after that, met a wonderful woman, and got married. I stopped taking the sulfasalazine when we wanted to have a baby, since it causes infertility in men. We had a perfect baby boy! I was so happy that I was ignoring the arthritis, which had never completely gone away, always some fingers were bad, ankles, shoulders a bit bothersome, my knees ached always, but not so much, and things didn’t go downhill much after I stopped the sulfasalazine, for two years. I did have one more knee operation to remove a sharp bone spur under one kneecap, which helped a lot. Then, a year later, all of a sudden I felt sick, and within a day my temperature soared to 104, I went into the hospital, they couldn’t find anything, and, you guessed it- a month later the arthritis was back with a vengeance. I had never felt so exhausted, and began to have really scary mental problems- disorientation, nausea, memory loss. I went back on sulfasalazine, but after six months was worse than ever. I was severely depressed and barely functioning- once, the thought of trying to get my socks on was enough to keep me in bed all day. I was so sad that I couldn’t play with my son who was now a rambunctious three-year-old, and I was very afraid my wife would give up on me. I was ready to give in and try methotrexate, despite very little faith it would work and fear of side effects, when one evening I was looking at my college alumni magazine and came across a letter from someone named Henry Scammell, which told of the work of a doctor who had gone to my college, a Dr. Brown, who used antibiotics to treat rheumatic diseases. Whoa! The old light bulb came on in my dim brain- antibiotics! I had always suspected that some infection was the cause of my problems, had even persuaded my good doctor to give me some antibiotic for a couple of weeks once to see if it would do anything. I got \”The New Arthritis Breakthrough\” and read it straight through, brushing the tears away as I read all the stories. I went right to my doctor, who was very skeptical, and didn’t want to prescribe minocycline because I was already having such bad dizzy spells. However, he said doxycycline was \”safer than aspirin\” and didn’t see any reason not to try it, so I began it according to Dr. Brown’s AP. I immediately felt absolutely terrible, couldn’t get out of bed for three days- but now I knew this was a good sign! After about four months I began to be sure I was improving, first because of getting better mentally- the dizziness and nausea left, my mind began to clear. After six months, joints started really getting better- for the first time in 25 years (including the years on sulfasalazine) all my fingers were good. After a year, I was feeling better overall than I ever did on sulfasalazine, and now, after almost two years, I can outrun my six-year-old son, do hard work on the house and garden, and live my life fully again. I’ll never be able to squat down with these knees, but I can wrestle with my son just fine. I have my life back, and my wonderful family, and I’m feeling better and better still. I never expect to stop the doxycycline; I never want to repeat what happened before. I am still shedding old habits- I noticed recently that after I sat still for a while, I was gritting my teeth in anticipation of the pain of moving my legs again- but there is no pain now! This was a slow,and not a steady process, with many setbacks, but I am absolutely positive that people with rheumatic diseases must really take the long-term point of view. The approach of so many doctors of trying to make you feel better fast, never mind the long-term consequences, is inexcusable with these diseases. I have been pretty much on my own- my good doctor is now very excited with my condition, but has no other experience with the AP. I am thankful beyond words to all the Road Back people, Henry Scammell and Dr. Brown for showing me the way back to life.
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