Several years ago I received quite a number of patients from northwest Iowa. The word had gotten around that I had an approach to arthritis that could get results where others didn’t, and Myra Frank came to me on such a referral.
Her father called me one morning and asked if I could help his daughter. He said she was twenty-one and desperately ill with rheumatoid arthritis. She had been to the Mayo Clinic where they put her on penicillamine, one of the relatively new drugs at that time; it had the risky component of producing suppression of the bone marrow in some people, and, unfortunately, she was one of the victims of that effect. When he called me, Myra had been sent home, but another hospital had found her white blood cell count was only 700, about 10 percent of what it should be to take care of infection. Ironically, the penicillamine had relieved none of her symptoms before going on to cause this toxic reaction.
I suggested that Mr. Frank take his daughter back to the Mayo Clinic, that they should take responsibility for her condition, but he said Myra refused to go back, that by that time she didn’t like doctors at all, she didn’t trust them and was thoroughly disillusioned. I made arrangements to get her admitted to the National Hospital at the earliest possible date.
When she arrived, it was obvious that she was every bit as sick as her father had said. She had large, draining abscesses scattered all over her body. Some of them were very deep and went down into the muscle layer. She was obviously frightened and had very little trust of any doctor, including myself. One of my major jobs, I saw at the outset, was to get her to accept some element of hope.
Little by little, we made progress in that direction. She already had been taken off the penicillamine, and the hospital at home had put her on high levels of cortisone in its place; we ended that as well, starting treatment with antibiotics and a low level of steroids to block some of the reaction. She began to pick up. And much to my amazement, her white cells actually began to come up as well.
Generally speaking, when a patient is suffering from aplastic anemia because drugs have stopped the bone marrow from forming cells, the blood levels never come back again and that’s the end of it. But Myra’s did. I never saw it happen before or since.
Gradually she improved in other ways as well. Eventually, she was healthy enough that one of the plastic surgeons at the hospital began a series of skin transplants to cover the large areas of her backside and leg that had become totally denuded of skin by her reaction to penicillamine.
Then we began to treat her arthritis, which was extremely severe. And that too began to improve.
At each slow step of the way, I could see that we were changing her attitude about medicine and about her disease. We were winning her respect. And most important of all, she was regaining her self-confidence.
Several years have passed. Myra still has active arthritis, but it is easily controlled now under the program. She has had some joint replacements. She has gotten to be strong. She drives a car. She travels around the world. And she has appeared more than once before committees of the Congress of the United States to tell the story of her treatment and recovery. She is an excellent example of someone who has been brought back from a condition that was truly hopeless.
When I was twelve years old, I lived with my parents and two sisters on our farm in Cherokee, Iowa. I was in the seventh grade and very athletic, probably more than even most of the boys in my class. I played every kind of game there was, and I was good at them all. At five feet seven inches and 130 pounds, I was also big for my age, and when we made up teams I was always the first kid my friends and classmates selected to be on their side. One day, a bump appeared on my elbow, and I went to the school nurse. She took one look and told me she thought it was rheumatoid arthritis. That’s something old people get, I thought to myself, and I laughed. I had no idea that the childhood I had known was about to end.
The nurse told my parents that I should see our family doctor. When I did, he said the nurse was right about the bump, and he referred me to an arthritis specialist at the University of Iowa Hospital. So we drove six hours to Iowa City, the doctors there told me the same thing I had heard before, and then they sent me home. They didn’t seem to be making a big deal out of it, and I didn’t think it was a big deal either.
But they kept asking me to come back.
At first, because of my age, I went to pediatrics, but after a year or so they started sending me to rheumatology. By then, if I still had doubts about what lay ahead, all I had to do was look around at the other kids and older patients to get a preview of what was in store. They looked absolutely horrible, and I knew they were really suffering. It was scary, and I’d come out of there feeling very depressed.
My own condition began going downhill fast. My joints ached, and I lost most of my old energy. More subtly, the enthusiasm and hopefulness and excitement for the future that were always a part of my earlier life had drained out of me. I was still at the beginning, still a child, but within those first several months my horizons became shorter and shorter until I deliberately stopped thinking about the future at all. The hospital still hadn’t started me on any medication stronger than aspirin, but by the end of the first year I was taking twenty pills a day and that still wasn’t enough to do the job. My appetite had fallen off, I had lost twenty pounds, and big knobs started to appear on most of my joints. Because my knee joints began to deteriorate, at a time when my classmates were still growing, I began to get shorter. And I was in pain.
My friends treated me differently, probably because it was so scary for them to see this happening to someone they knew who had been so strong and athletic. In just a few months, I went from being the first one picked to being the last one anyone wanted on his or her team, and that hurt terribly. Pretty soon, I couldn’t play at all. I would go to school, come home, and go to bed. I didn’t talk to people about my illness. My mother sat down on the edge of my bed one afternoon and asked me to tell her how I felt—not just physically, but how I felt about what was happening to me. I told her I didn’t want to talk about it. I wouldn’t talk to anyone about it.
There’s a lot of height in my family: my father is six feet seven inches, one sister is six feet, and the other sister is five feet ten inches. Both girls are younger than I, but they grew beyond me and eventually became basketball players in high school. I probably would have been tall too, but I stopped growing at the age of thirteen. I suspect the cortisone had something to do with it—my sisters both grew a couple of inches the last two years in high school.
The disease began to affect my marks in school. Through the seventh grade I had been pretty much a straight A student, but when I was a freshman in high school I got my first D. I just didn’t have the concentration to study anymore.
During all of these changes, there was one constant: I kept getting in the family car every few months and riding the six hours each way to the hospital in Iowa City. Once I got there, the doctors would seat me on the examining table and shake their heads knowingly about how much worse I was getting, and often a whole team of young doctors or medical students would poke my joints and pull me this way and that. I soon grew to feel that I was making this long journey for the benefit of the doctors, to demonstrate how a disease operates and to reassure them that nature was running its proper course. Once in a while one of them would tell my parents that maybe we would get lucky and the disease would eventually “burn itself out,” something that apparently can happen in very rare instances of the juvenile form of the disease. But the condition continued through my adolescence, and it was decided that I didn’t have the juvenile form. Never once in the first three years did I hear anyone talk of doing a single thing to make me better.
That changed suddenly during my sophomore year of high school, as I entered the fourth year of the disease. By then I had a lot of joint damage, especially in my hands, and I was badly crippled. On one of my visits to Iowa City, the doctors told me they were going to put me on cortisone. Nobody suggested it would be a cure, but I was told it would help for a while with the symptoms.
The morning after the first treatment I felt so good I almost jumped out of bed. That’s the way cortisone is at the beginning. And it wasn’t just the first day: it worked well for the next couple of years, and got me back in the mainstream. I look back on cortisone as the reason I was able to get through high school. My grades came back up, and my spirits improved enormously.
I still look back on those high school years as including some very good times. I played drums in the marching band. I attended every athletic event there was, and even though I could no longer participate, I especially loved watching my sisters play basketball. I went to proms and homecoming dances and was in the National Honor Society. And through it all, even though I couldn’t bring myself to talk with them about my arthritis, I knew I had a wonderful, loving family behind me.
But cortisone is one of those drugs you’re not supposed to take in large quantities or for long periods, and so by the end of my senior year the doctors tried tapering me off. I could never stop cortisone altogether because by this time my body had stopped producing it naturally and I needed to keep up a small maintenance level just to stay alive.
They didn’t taper me off in time. I began to develop side effects from the large earlier doses. Most particularly, I began to experience a breakdown of my skin tissue. Every time I banged against something or got a scratch or small puncture, I would develop sores and lesions. My arthritis came back at the same time, even worse than it had been before.
On the strength of my grades during the final three years of high school I enrolled at Iowa State University, but my condition was deteriorating fast. I got a bike so I could cover the sometimes long distances between classes, and I rode it through snow and in all kinds of weather. But I found that the energy I was using to get to class was all the energy I had, and there was nothing left for the work. I would have to sleep on campus a lot, and when I came home to my dorm I was so tired from the return trip that I couldn’t study there either. At the end of my second year, I went home to Cherokee for the summer vacation and I got a letter from the school saying I had flunked out. I knew I had worked as hard as I was able, and it was a terrible blow.
Once the doctors had reduced my cortisone, they decided to try injecting me with gold. I can’t remember now what the treatments cost, but they were terribly expensive. One of the side effects of gold can be kidney failure, and a first indicator that the gold is attacking the kidneys is protein in the urine. The protein showed up in tests after just a few months, and so the gold was stopped. It hadn’t seemed to do a thing to improve my arthritis, and when they stopped giving it to me I didn’t feel any different either.
The doctors switched to Plaquenil, which had been developed initially to fight malaria. Although I developed no side effects, I also showed no signs that it was doing my arthritis any good, so after six months they stopped that treatment as well and switched back to gold. All together, I was on the gold for about a year, until they had to stop it permanently.
By this time I was feeling very sick. I had no energy, was seriously anemic, in a lot of pain, and very depressed. I also had the feeling that I should be trying harder, but I just didn’t have the energy to do more than I did. And I didn’t like my family and friends to have to see what I was going through, so I made an effort to pretend that everything was fine. That strategy didn’t fool anyone around me—it was perfectly obvious that I was in terrible shape—but because I spent so much time pretending, I never was able to come to terms with what was really happening to me.
I did have some good friends who stuck by me, and I often wondered what they were thinking—about me, about my disease, and about how I was handling myself. In a way, thinking about their reactions was as close as I dared get to thinking about where my life was going.
When I had left college I was majoring in accounting, so I enrolled in a small technical school in Sheldon, about fifty miles from home, and tried to resume my studies. But it didn’t work. It seemed as though trying to lead a normal, productive life only made the arthritis worse, and the more I ignored it, the more it demanded my attention. The problem wasn’t just the arthritis; the side effects were getting more serious at the same time.
I began to lose skin. A large sore appeared on my rear, and new sores emerged on my fingers, all exuding pus and causing a lot of discomfort. My white blood cell count dropped steeply, so my body’s ability to heal itself and its natural defense against infections were very weak. All these problems were explained as the natural side effects of cortisone and the other drugs I’d been given, and the doctors kept saying they wanted me to get off the cortisone—but they didn’t know how to do it.
We decided it was time to try something different, so I left the university hospital in Iowa City and started seeing a doctor in Omaha, Nebraska. My dad was usually the one to make those decisions; I really didn’t care one way or another. I didn’t have a whole lot of hope that anyone was ever going to find any way to help me, and I guess I was getting pretty dejected about going back to places where we spent a lot of money and no one could tell us anything.
Even so, I still wasn’t totally cynical about the doctors who had been treating me. During the whole course of the disease, a lot of people would approach me or my family and ask if we had tried carrot juice or cod liver oil or whatever the latest fad was, and we’d see stories in the newspapers at the supermarket checkouts about exotic cures of one kind or another, but we just ignored them all. I continued to believe that the doctors who had studied the disease would know about every treatment on the market, and that if they didn’t tell me about it, it was because it didn’t work.
I had an appointment to see the doctor in Omaha one Monday morning, so I came home from school in Sheldon the Friday before in order to spend the weekend with my family in Cherokee. It had been normal for me to run a fever of 100 or 101 over the previous year, and my weight had dropped to just around a hundred pounds. My dress was a size 5. I felt sick most of the time. That Sunday night, as we were all sitting at the dining room table after dinner, for no apparent reason and without any warning, I suddenly vomited. It happened again a short time later in the kitchen.
In addition to being slightly embarrassed, I felt even worse than usual. We knew I was going to see the doctor the next day, so after a while I sat in an easy chair beside the telephone, trying to get my mind off the way I felt by studying. My father recalls that a short time later he was reading in the living room, and when he heard me talking in the dining room, he assumed I was using the phone. Then he realized that I was mumbling incoherently, and when he came out to the dining room he found me bent over the side of the chair in convulsions. I don’t remember anything until I woke up in the emergency room of our local hospital. They stopped the convulsions and put me in an ambulance to Omaha.
The doctors in Omaha stayed up with me all night, running tests, trying to find out what had happened. What they finally determined was that an infection from all the sores on my body had suddenly “turned on,” and that my temperature had shot up to 105 as my system tried to fight it, producing the convulsions.
They gave me antibiotics to fight the infection. They also decided I needed to put on weight and they put me on a 4,000-calorie diet. I didn’t gain any weight to speak of, and although the infection seemed to eventually diminish, the doctors were unable to heal the lesions. After a month in the hospital they sent me home, still covered with sores.
I went back to the technical college, but I knew by then that my further education was a lost cause and that I was going to have to stay close to home, because I couldn’t take care of myself. Shortly afterward I saw an ad for a bookkeeper in Cherokee, and I resigned from the school and moved back in with my family.
During the following year, the side effects were always with me, and even though I managed to work fairly steadily on the new job, I had the feeling that I was sitting on a deadly bomb and that it was just about to explode. I had sores on the bottoms of my feet, and at the end of that year one of my feet suddenly began to swell. I knew that once more, the bomb was going off.
It was the weekend of a family reunion, and I just wasn’t up to attending, so I stayed at home in bed. Dad must have been doing a lot of thinking about it, because when everyone came back, he walked into my bedroom and said, “What do you think about going up to Rochester, Minnesota, to the Mayo Clinic?”
I could feel the tears coming into my eyes. I was so sick of those places I never wanted to see another one. Each new hospital was a little farther away than the last, and I knew that none of them could do anything for me. I told him I was sure the Mayo Clinic would be just one more place where I was a guinea pig for the doctors to poke and probe, and that I’d get nothing out of it.
But as usual I said yes.
The doctors up at Mayo examined me thoroughly, and then told me it was time to try something a little different. They had a new drug called penicillamine.
I recognized the name. It was all the rage at the time; I had seen an article about it in the National Enquirer and knew that penicillamine had gone through the FDA double-blind study and showed great promise. But I also knew that cortisone and gold and Plaquenil and untold numbers of other “wonder drugs” had similarly gone through the double-blind tests with flying colors in their times, only to eventually fail badly in sustained clinical use. I agreed without much enthusiasm or hope, and the Mayo Clinic began yet another course of treatment.
While I was in Rochester, right at the beginning of the penicillamine therapy, a new sore erupted on my leg. It was only about the size of a quarter at the beginning, but it was really deep and was extremely painful. Meanwhile, the doctors at Mayo examined the sore on my rear that had been open for the past two years and decided to do a skin graft. The skin was so unhealthy that the graft failed. And the sore on my leg got deeper and more painful.
My white blood count was very low when I arrived in Rochester, and I was kept in isolation for the entire duration of my stay. Rochester was a long way for anyone to travel from Cherokee—about seven hours by car—and so my family only got up there a few times during the first month, and I had one or two visits from a girlfriend I’d known since high school who had stuck with me through everything. One day the doctor came in and told me that I could expect to be in there for another three or four months. When he left I cried and cried, and no matter how much I wanted to stop I couldn’t turn off the tears.
I had plenty of time to think while I lay there in isolation; I wasn’t allowed to get out of bed even to go to the bathroom. I didn’t like the way my life was going. I couldn’t even bring myself to consider the future, but I knew in the back of my mind that the day was going to come soon when I would be truly helpless, and I would be dependent on someone else to take care of me. If I had any doubts, they were dispelled one day when a hospital social worker or psychologist came into my room and started to counsel me on how to accept my disease. She told me I could expect to be in a wheelchair in the not-too-distant future. I think she was feeling me out to determine how realistic I was about what lay ahead.
My father was visiting with me at the time she appeared, and I noticed during her little talk that he turned white as a sheet. Perhaps her remarks had been for his benefit as well, because certainly what she was telling me would have an impact on the whole family. As for me, instead of being shocking, the revelation was a matter of real indifference; I didn’t think of myself as being a part of life at that point anyway, and I listened to her with no particular reaction. When she left the room, I realized with some surprise that my father was furious. “Don’t listen to a word she said,” he told me. “She doesn’t know what she’s talking about.”
Soon after that, my father decided on another, completely different course of action. He came up one weekend in the middle of my second month and told me about a story he had seen in an Iowa newspaper, during the same family reunion when he had heard about the Mayo Clinic. The article was about a rheumatoid arthritic named Don Knop, a young college student from Iowa who had gone to the National Hospital outside Washington and been treated by a doctor named Thomas McPherson Brown. It said Knop’s arthritis was now under control, that he was able to function normally with no exotic chemicals and no side effects. When my father showed me the clipping, I read it quickly and let it drop on the bed, then turned my face away and stared out the window at the construction going on outside in a world I didn’t seem to be a part of. I was certain this was just one more beginning of another painful and inevitable defeat. It was more than I could bear.
My father patiently explained that he had learned far more about the story than was in the newspaper. He said he had met the Knop family and had heard of their son’s experience at first hand. He had even listened to a tape recording that Dr. Brown had given them on the nature of their son’s disease, its prognosis under the treatment he had begun, and the course it would follow to its conclusion.
“Conclusion” was a word I had never heard before in the whole decade of my ordeal. It didn’t inspire the least bit of hope, but I realized when my father said it that no one ever before had talked about the possibility of my disease coming to an end. Dad went on and on; he was filled with excitement, and he was trying to pass some of it to me.
But instead of the reaction he was looking for, all he got from me was tears. He asked if I could explain why I was crying, and all I could say, over and over, was, “I don’t know. I don’t know.”
But looking back on it, I think I do. I usually cried only when I was facing a new treatment or hospital. Maybe it forced me to think of the future. After ten years of torture and heartbreak, I had become terrified of hope; I knew where it would lead. I couldn’t bear to consider the possibility that he might be right.
Two things happened during that visit. My father finally got me to agree to go to Washington to meet Dr. Brown, with whom he had already made an appointment. And, because the doctors apparently couldn’t think of anything else to do with me, I was told to “go home and wait it out”; so I left the Mayo Clinic.
Because I was still continuing the penicillamine therapy, arrangements were made for me to have my blood and urine tested every two weeks at our local hospital for toxicity.
The trip to Washington was scheduled for about ninety days after my release from Mayo, on the twelfth of December. About a month before that date, I went into our hospital for the regular biweekly tests, and when I returned home I felt really sick. There was nothing alarming in this, because I felt sick almost all the time. I went to my room and lay down on the bed. I hadn’t been lying there for more than a few minutes when the phone rang; it was the doctor who monitored the tests, telling my mother she had to get me back to the hospital as soon as possible. My white count had dropped to 700, which is very, very bad. In fact, they were afraid they might not be able to get it back up again.
My parents remember the times they visited me during the next couple of days while I was in isolation; my skin was gray, and they were frightened that I wasn’t going to make it. The simple act of turning slightly in the bed produced pure agony. For the first time, I sensed the possibility that I might be about to die.
The local doctor ended the penicillamine therapy immediately, then raised my cortisone to an extremely high level; a little later my white count began to rise in response. The crisis passed. I stayed off the penicillamine, which should never have been prescribed for me in the first place with my low white count, and a month later I went to Washington.
I met Dr. Brown. We talked for a long time, and he explained to me how arthritis occurs; it was the first time anyone had discussed my illness with me in terms of its cause. He then explained what he was going to do to help me, and why simple antibiotic therapy would work. That was another first; no one else had discussed results, because in no previous treatment had positive results been a realistic possibility. At the end of that first meeting I was finally able to look at the future for the first time in ten years, not as something to be feared, but with hope.
I stayed at the hospital for less than a month, and by the time I went home I could already feel the difference. I had more energy. I was no longer smothered by depression. I felt better. My lesions and sores closed and began at last to heal. I had some skin grafts, and this time they worked. A few months later, I felt well enough to return to school—not at the technical college near my home, but back at Iowa State.
I graduated in 1983 with a degree in accounting. That September I got a job as an auditor with the Army Audit Agency, an opening I heard about from someone I met at the National Hospital, and I just recently moved to a similar job with the Office of the Inspector General. In just those few months, the world opened up to me again and I walked back into it.
I wrote to most of the doctors who had treated me since I was a child and told them about the astonishing thing that had finally happened. I gave them all the information about the causes and mechanism of arthritis that I had learned from Dr. Brown and from scientific papers that he and other researchers have published in medical journals. I described the treatment and my recovery. I felt my greatest responsibility now was to pass along the secret of new life for use on other patients they might treat for the same disease.
Several doctors wrote back. A rheumatologist from the Mayo Clinic told me that this kind of thing happens now and then in rheumatoid arthritis, and that nobody really knows why—it’s just a matter of timing. He suggested that my treatment in Washington probably had nothing to do with my getting well. A doctor in Iowa City told me there was no scientific proof for the treatment I had received at the Arthritis Institute, and he said that such proof could only be derived from six-month double-blind studies—the same studies through which the drugs that nearly killed me had all passed with flying colors before displaying any of their lethal effects. Both letters made me very angry.
The doctor from Omaha was an internist, not a rheumatologist, and he wrote back too. He said he had heard of Dr. Brown and was very interested in how things were going; he asked me to keep him posted. Unlike the other two doctors, he wasn’t defending an entrenched position, and he was willing to listen to his patient. I felt he really cared.
I remember a few of the other things I heard about rheumatoid arthritis from the Mayo Clinic and from a lot of other doctors and hospitals, and I have the choice of believing those things or believing my own experience. And I’m not alone; I met and talked with many other patients whose arthritis has been brought under control or into complete remission by Dr. Brown’s treatment—there are over ten thousand of them. Today I don’t sit in a wheelchair, and I don’t expect I ever will. Instead, I have a wonderful, productive career and travel all over the world.
I have a life.
At last.
Myra Frank, who lost her childhood to juvenile RA, now travels the world as a government auditor for the Inspector General’s Office (the picture was taken just outside Rome.) The story of Myra’s treatment and recovery was the first case history in The Road Back (chapter 9 of this book); a decade later, her name became a fitting homophone for the NIH-sponsored MIRA trials, which vindicated the therapy that saved her life.
Talmadge Williams, Ph.D., educator and consultant in Arlington, Va., was another of Dr. Browns patients. His case history appears in chapter 13 of this book. When Dr. Williams was interviewed about his recovery on the television program “20/20,” on camera he picked up a packing case containing a heavy computer printer and, with little apparent effort, placed it on his office shelf.