The hot shower splashed my face, and anticipation washed over my body as my boyfriend soaped my back and thighs. I remember how great it felt then to be young, healthy, attractive. Suddenly, without warning, Craig dug his thumb and forefinger into my back and squeezed. I let out a yelp and whirled around. He grinned and said that he’d just popped an enormous zit. It stung like hell. I thought it was an incredibly rude thing for him to do. He apologized, but suddenly I wasn’t in a very forgiving mood. What I wanted to do was smack him. Instead, I got dressed and went home, a romantic evening ruined. That was in October of 1986.
For the next several months, I was busy attending classes at CSU-Sacramento during the week, then commuting to San Diego every weekend to work. I had so many things to keep track of, I was barely aware that the spot my boyfriend had squeezed had become a tiny open sore over which scabs formed, then fell off prematurely. It was frustrating and annoying but not painful. It was small (narrower than the tip of my pinkie) and located where weird contortions in front of a three-way mirror were required to view the damn thing, so it was easy to ignore. I hoped it would eventually go away.
By January of ’87, my bank balance was so low that I decided to take a break from college and return to San Diego to work. Soon I noticed four or five similar sores on my back and chest. I began using various over-the-counter products that promised rapid healing. None of them worked. Months slipped away, but my condition remained virtually the same. Then, literally overnight, several much larger sores appeared on my face. I looked as though I’d been spattered with hot bacon grease. I’d never seen or heard of anything so bizarre. I became terrified of falling asleep at night for fear of what I’d find the next morning. There was no more room for denial — this was serious. I had to see a doctor.
I didn’t have a family physician since I’d always been so healthy. A friend recommended Dr. A. During the initial consultation, I learned he was a firm believer in holistic medicine. After a brief examination, Dr. A concluded that my liver was the culprit. He placed me on a high-fiber vegetarian diet to rid my body of toxins. I returned for a couple of follow-up visits; but when there was no improvement in the way I looked, I decided to get a second opinion.
More of my face was opening up. I had large, bright-red splotches on my cheeks, nose, and forehead, where the top layer of skin was missing. The brightness and texture reminded me of a peeled tomato. Desperation set in. Perhaps a dermatologist would be better qualified to help me.
I found a skin-care clinic in Mission Valley that accepted walk-in business. Dr. B was available. I had misgivings about him from the beginning. He hobbled in to see me on crutches, with one foot in a cast. At the time, it struck me as comical to see a doctor looking more like a patient. I made a little joke about it, which he took the wrong way. We were off to a bad start. Later, when I removed my top so he could examine my back and chest, he made no effort to hide a look of disgust on his face.
According to Dr. B’s diagnosis, I was suffering from seborrheic dermatitis. Acne? Impossible! It didn’t look like any acne I’d ever seen. But then what did I know? He sent me home with a prescription for a topical cream and told me to schedule my follow-up appointment at his private office. I raised no objection, since it was closer to home. Later, I found out that his private office fees were substantially higher than those charged by the clinic. It seemed unfair, but I didn’t complain. I continued to see Dr. B once a week for about a month and a half and observed no improvement in my condition. In fact, I looked worse. My face was disintegrating, and Dr. B obviously hadn’t a clue about how to stop it. On top of that, his attitude left much to be desired. Dr. B was not kind or sympathetic in the least. When his treatments failed, he did not pursue other medical answers. Instead, he accused me of self-mutilating and suggested I see a shrink.
I’ll admit I did pick — couldn’t help it. It was extremely itchy. I spent hours in front of the bathroom mirror just staring, crying, and picking off all the thick, scaly plaque buildup. In my mind, rosy, raw cheeks were somehow more acceptable than cheeks covered with strange greenish-brown scabs that made me appear reptilian. It was possible that this behavior might exacerbate the problem, but in no way would I accept the blame for having created it. Nevertheless, I made an appointment to see a clinical psychologist.
I still remember the looks I got from people in the elevator as I rode up to the psychologist’s suite on the top floor of the high-rise professional complex. This psychologist serves a primarily upscale clientele. Luckily, her sliding fees made those sessions just barely affordable. I began seeing her once a week, mainly because by then most of my friends had deserted me, and I desperately needed someone to listen and at least pretend to care. When the first episode of Beauty and the Beast aired on television and Ron Perlman’s character was introduced, I remember how bitterly I wept. "He looks better than I do,” I thought. "Sure he’s ugly, but at least he’s not diseased!”
It saddens me to acknowledge that I turned to a psychologist for friendship. Like a guy going to a prostitute for love — I didn’t get what I really wanted, but it was better than nothing, I suppose. I was definitely not the typical neurotic yuppie she was used to dealing with.
Then I decided to seek the services of a woman dermatologist. I found Dr. C through her advertisement in the Yellow Pages. Dr. C is an attractive middle-aged woman who specializes in what I would call cosmetic dermatology — facials, dermabrasion, acne treatments. She’s probably good at what she does but definitely not "a doctor’s doctor.” Dr. C seemed unaccustomed to dealing with real diseases. Her examination was perfunctory, and she just went along with Dr. B’s diagnosis and prescribed more worthless topical acne medication.
By then I looked like someone who’d fallen off a motorcycle and skidded face-first across the roadway. The top layer of skin was missing from both of my cheeks, my forehead, part of my nose, a sizeable area of my neck, my earlobes... not to mention the clothed portions of my body, which mattered less to me only because they weren’t exposed.
Thick scabs continued to form. I kept my face well lubricated with Vaseline or Polysporin ointment to prevent drying, cracking, bleeding, and to minimize future scarring. That made the plaque very mushy. It slid all over, eventually sticking to my long, dark hair, which I wore loose to hide as much of my face as possible.
Feelings of hopelessness caused me to miss my next appointment with Dr. C. Her office called, and it was rescheduled. At the end of that visit, I asked the doctor what she suggested I do to keep from picking. How had she handled other patients with this problem? She replied, "My patients either get better or they don’t come back.” That was it I paid my bill and walked out.
After that I withdrew even more. How could I face the world without a face? I had a job that paid $400 a weekend, taking care of a geriatric patient with poor eyesight who hallucinated a lot. Many times she’d look at me and burst out laughing. It was the perfect setup.
During the week, I left my apartment only when absolutely necessary. Grocery shopping became a nightmare. I vividly recall standing in a checkout line one afternoon. I overheard a Teenage Mutant say to her buddies, as she pointed straight at me, "That’s the reason I could never be a doctor.” I was terribly embarrassed. I also experienced an intense feeling of guilt — as if my ugliness were an abominable sin. Once I was driving down Prospect in La Jolla when a yuppie playboy in a red convertible spotted me. He whipped his car around and tailed me for several blocks, barking and yelling derogatory remarks.
Still, my worst experiences involved some elderly women at the retirement complex where my patient lived. They were extremely critical of my appearance. And since most of them were hard of hearing, they spoke so loudly that I never missed a single insult whenever I passed through the lobby.
In general, women in their 30s and men over 40 were the most empathetic. Poor people reacted more politely than the filthy rich. But I wonder if my girlfriend carried it a bit too far when she said, "Now you know what it’s like to be black."
Cooped up in my apartment most of the time, I drank a lot (mostly wine coolers), ate a lot (everything chocolate), cried a lot, and wrote a slew of depressing poems like this one titled "Mirror Image": "Where once was a beautiful young woman/now stands a barely recognizable/disfigured and loathsome creature/whose sockets expose the emptiness within." The open sores on my back and chest made clothing painful. I wouldn’t wear any till my roommate came home, then I’d slip into something silky — worn inside out because seams were killers. I was no longer able to sleep with my back or chest touching the mattress, because the pressure would cause bleeding. I tried to adapt to a sitting position but never got used to it. In a constant state of exhaustion, I became cranky, irritable, and wallowed in self-pity. How much longer could I bear living this way?
My roommate never stopped telling me that I was a "beautiful and talented young woman," which sounded ridiculous but at the same time was much appreciated. He kissed me a lot — in the morning before he left for work, when he came home at night, at bedtime. Under normal circumstances, the feeling of his thick, bushy mustache would have been exciting. But at the time, his exuberance terrified me. Those bristles were capable of inflicting considerable damage. Still, his nightly pep talks kept me going at a time when my most pleasant thoughts were suicidal fantasies.
In November of 1987, more than a year after my ordeal began, I made an appointment with Dr. D, a dermatologist with a practice in North County. I knew he was good, since I’d been his patient once before, about ten years earlier. I’m not sure why I waited so long to return, but it seemed as though I’d saved him as my last resort. Dr. D resurrected my file, then scolded me for not seeing him sooner. He seemed to be everything I felt the other doctors were not — competent, compassionate, and truly concerned about my well-being.
During that first meeting, Dr. D said he had a strong suspicion of what the problem was, but a biopsy would be necessary for confirmation. He didn’t want to prescribe anything until he was sure what disease he was treating. One thing he could tell me with certainty was that whatever it turned out to be, it was definitely much more serious than acne. From his careful choice of words and overall demeanor, I sensed he was preparing me for bad news. On the other hand, Dr. D exuded so much confidence and charisma that I was able to relax — even as he carved out a tiny specimen from my shoulder blade to send out to the lab.
I left Dr. D’s office that afternoon with a tremendous sense of relief. Within a week we’d know what the problem was, and most problems have solutions. My feelings of guilt vanished. I no longer worried that I might be self-mutilating in my sleep. I had a real illness — hallelujah!
After months of slow, steady decline, the pace suddenly accelerated. I stood in front of my bathroom mirror and watched with a mixture of horror and fascination as the open areas on my face grew larger by the hour. They itched like crazy. Finally, I couldn’t stand it any longer. In tears and on the verge of hysterics, I picked up the phone and called Dr. D. He told me to come in right away. Although he hadn’t received the lab results yet, he decided to give me a few prednisone pills. I was scheduled to return in a couple of days. As I was about to leave, Dr. D handed me a slip of paper on which he’d written his home phone number. I walked out of his office smiling. I felt great to know I had a doctor who really did care.
Next visit, Dr. D greeted me warmly and led me to his private sanctuary, where he motioned to me to take a seat. He closed the door, sat directly across from me behind a desk, and started talking. As he suspected, I had a rare auto-immune disease called pemphigus vulgaris. It was considered the worst member of a family of pemphigoid (blistering) diseases. As Dr. D explained it, my overzealous immune system was mass-producing antibodies to attack and destroy the connective tissue of my epidermis. He stressed that this disease was indeed quite serious — life-threatening in fact. Left untreated, the pemphigus would destroy more and more of my epidermis until eventually I would die, either of infection or dehydration. Although there was no known cure, standard treatment involved suppressing the patient’s immune system (thus halting the production of antibodies) through the use of steroids (such as prednisone) or injections of gold.
We joked about how contracting AIDS might provide a cure for pemphigus. Then Dr. D became very serious. He admitted that he had never treated anyone with this disease. And he wanted me to know that treatment could easily prove to be lengthy, costly, possibly futile, and potentially lethal. The mortality rate for this illness was very high; in many documented cases, the patient died within a month of the onset. But I’d hung in there, untreated, for more than a year. Being young and otherwise healthy, my chances of survival were increased. Dr. D assured me that it wasn’t contagious. (Damn! There were lots of people I would have loved to bite.)
All this was almost too much for me to absorb, but there was more we needed to discuss. I had no health insurance. The “life-threatening” classification meant that I was no longer eligible for individual coverage. The nursing service that I worked for had no group plan. Dr. D suggested that I quit working and apply for MediCal; and he believed I’d have no problem qualifying for state disability benefits as well. I told him that pride would not allow me to accept government handouts. I preferred to continue to work as long as that was possible and pay my own way. Dr. D told me not to worry, we’d take things one day at a time. He said he would be willing to treat me even if I wasn’t able to pay for his services. I believe he welcomed the challenge my illness presented. It allowed him to prove to himself that he was more than a mere “zit popper.” At any rate, I was extremely grateful for his support. He sent me home with a prescription for more prednisone and scheduled another appointment within a few days.
I left his office in a state of shock. By the time I got home, I was ready for a good cry. That night I called my mother first, then all of my friends. I’m sure they felt sorry for me. Seemed everyone was at a loss for words. After all, what is proper etiquette in a situation where a friend calls and says she’s just been diagnosed with a rare, incurable disease and may soon be dead?
The last call I made that night was to my father, who lived in Maine. We hadn’t spoken to each other in more than two years. Since shortly after he’d remarried. His new wife and I didn’t get along. I almost hung up when she answered the phone. There was a great deal of tension and some hesitation on her part as she decided whether I could speak to him. Finally, she handed my dad the phone. I don’t recall much of our conversation — just that it felt awkward talking with him after so long. I remember he expressed some concern. He told me of his plans to fly to California for the holidays to visit my grandparents, and he said he’d stop by to see me. Christmas was more than a month away. I told him I might not be around by then. He said his airline tickets were nonrefundable. Sure, I understood. After I hung up, I wondered why I’d even bothered calling.
As the holidays approached, my calendar was suddenly filled. I had appointments scheduled for blood tests and doctor visits almost every day of the week. Fortunately, more hours became available for me to work, and I grabbed them. Sixty-eight-hour work weeks became the norm. That’s how I was able to pay my medical bills. And just before Thanksgiving I moved in with my mother.
The small dose of prednisone that I’d started out with was steadily increased till I reached the level of 180mg a day. Slowly, my skin began to show signs of healing. The results of an anti-epidermal test performed during the first week under Dr. D’s care clearly indicated how far the disease had been allowed to progress. I was actually quite fortunate; within a few more weeks, my chance for recovery probably would have been lost.
After taking prednisone for a little longer than a month, I began to have several unpleasant side-effects. I’d gained more than 30 pounds, developed a condition known as ‘‘moon face” — where my face turned puffy and perfectly round — and terrible acne broke out all over my upper body. I also experienced sudden mood swings, jitteriness, and a frightening feeling of being completely out of control. But what worried me most was the shortness of breath. Even the mildest exertions, like carrying a small sack of groceries from the car into the house, made me feel as though I were about to experience a massive coronary. I told both of my doctors about these symptoms (I was also seeing an internist at this point). They tried to cut back on the amount of prednisone I was taking, but those attempts proved unsuccessful. The pemphigus would flare up, and then the dosage would have to be increased.
Judging from their reactions, I don’t believe people realized that I was sick. They probably thought I was just a fat, ugly slob who didn’t give a damn about her looks. That would explain their anger and hostility.
Christmas 1987 was grim. My ex-roommate had a new girlfriend and no longer had time for me. My mother probably thought she was being supportive, but it was difficult for both of us. Some days she couldn’t do enough, other days she’d refuse simple requests like picking up something I needed from the store. One by one, all my former friends disappeared. They simply couldn’t handle the close-ups. Only one girlfriend remained — Rebba. She and I had known each other for many years. We’ve shared many personal triumphs and crises. There are periods when we don’t speak to each other for months, but I’m sure we both know that should the need arise, we’ll always be able to count on one another for support.
My father stopped by, as promised, a few days before Christmas. Our reunion was a disaster. When I greeted him at the door, he screwed up his face and gasped, “Oh, my God.” I wished he hadn’t come. He stayed about three hours — time enough to catch up on all the family gossip. Just before he left, my mom asked him to loan me some money to help cover medical expenses. He told her he’d have to think about it. When she pressed a little further, he finally said no.
Rebba, Mom, and I celebrated Christmas Eve at Denny’s. I didn’t want to go. I hated being in public, but I was outvoted. So I went and sat there feeling miserably self-conscious. When we returned home, Mom gave me one of the nicest gifts I’d ever received: a fur jacket. But even that backfired. I couldn’t see myself wearing it. I’d look ridiculous. It’d be like seeing a dingo dressed in a Dior gown — ridiculous. I’d have to wait until I recovered — when and if that ever happened.
At UCSD’s biomedical library, I read everything they had on pemphigus in one afternoon. Most of the books were more than 20 years old. Even the magazine articles appeared woefully outdated.
As I flipped through the pages of grotesque photographs, I remembered that Dr. D had taken my picture at the time of my first visit without asking my permission. He shot me naked from the waist up, sitting on an examination table. Raw, bleeding, completely vulnerable, I shut my eyes just before he snapped it. That was all I could do. Suddenly, looking at those photographs seemed like a tremendous invasion of privacy. I closed the books. I’ve never felt so much empathy. I could easily imagine the physical and psychological suffering those people must have endured. To make matters worse, the profiles drawn in even fairly recent medical journals of ‘‘typical” pemphigus patients were extremely unflattering. We were characterized as being old, obese, and of lower than average intelligence. But I was young, perhaps a little overweight, but I’d been labeled mentally gifted as far back as junior high. This was defamation of character.
I returned to my doctors more dissatisfied than ever. The severity of the prednisone side-effects escalated. My sense of frustration that not enough was being done placed a strain on the doctor/IMpatient relationship. I’d grown tired of Dr. D’s patronizing attitude and behavior; he addressed all his female patients as ‘‘lovely young ladies.” Suddenly, this irritated me to the point that I asked him nicely to stop saying that to me.
While I’d once seen Dr. D as some sort of personal savior, I came to recognize that he was just as baffled and frustrated as I was. I kept reading and began offering my own suggestions: ‘‘Have you considered this?” ‘‘How about that?” I questioned him about everything I read or heard about as having any sort of anti-inflammatory properties. Dr. D tolerated my inquiries reasonably well. I saw few signs of resentment. It might even have motivated him to loosen up and experiment a little. He prescribed Dapsone (used to treat leprosy), Retin-A, antibiotics, Diprolene creme, niacinamide (vitamin B3), and even made inquiries about a new drug that was then only available in Canada. But every time my prednisone intake was reduced, the pemphigus would flare. After each flare-up, I’d have to take an even higher dose of prednisone, then gradually cut back to the previous level. Yo-yoing wasn’t good for me.
Finally, Dr. D called with some exciting news. He’d just spoken with a colleague at an Eastern university who ran a pemphigus clinic. (I was happy that he’d made the call, though it disturbed me that he’d waited nearly seven weeks to do so.) When given the results of my first anti-epidermal test, the clinic director was convinced that my best (if not only) chance for recovery was to undergo treatment known as plasmapheresis. This was an experimental procedure, with no guarantee of its effectiveness. It employed dialysis equipment to filter the harmful antibodies out of the bloodstream. Dr. D asked me to come in to his office that same afternoon.
When I arrived, I tried to point out what I saw as a marked improvement in my appearance. It seemed to have occurred within the preceding week. I begged for one more chance to taper off prednisone. I think Dr. D assumed I was simply afraid of undergoing plasmapheresis. He ordered a second anti-epidermal test that day but did not want to wait for the results. He saw no point in procrastinating. He discontinued the Dapsone and niacinamide, which I’d been taking for only a week, and replaced them with a strong immunosuppressant drug called Imuran. This would eventually take the place of prednisone as well. But the prednisone would have to be withdrawn gradually to lessen the possibility of adrenal shock. The game plan was to suppress my immune system with Imuran to the point where no more destructive antibodies would be produced and to eliminate those already in existence through plasmapheresis. Then, it was hoped, they wouldn’t return and I’d be “cured.”
I was sent to a local hospital, where a surgeon inserted a vascular catheter (long plastic tubing) into my chest. Halfway through the procedure, I experienced such -intense chest pain that the catheter was removed, and I was checked to make sure I wasn’t having a heart attack. The same tubing was then reinserted. The second time wasn’t nearly as painful as the first. I was concerned about the sterility of the tubing, since my immune system was so suppressed, but no one would discuss it with me. I was scheduled to receive plasmapheresis three times a week as an outpatient for the next four to six weeks. But after only two treatments, I developed a blood infection that required immediate removal of the catheter. This upset me greatly. Not only would re-insertion be painful, it would be expensive as well. In less than a week, besides the potentially lethal blood infection, I had developed other infections — in my mouth and in one of my toes. As immune-suppressed as I was, it scared me to think of all the germs and viruses lurking around. I spent six days in the hospital before being released with an IV pole, heparin lock, and a ten-day supply of antibiotics.
Dr. D came to see me twice while I was in the hospital. I think he came more to lend moral support than anything else. He was, in fact, my only visitor. During the first visit, Dr. D told me that my second anti-epidermal test had come back negative. He believed this had to be an error and insisted that it be repeated. Blood was drawn for my third anti-epidermal as I lay in my hospital bed. A few days later, Dr. D returned with great news. The second test results had been confirmed. There were no detectable antibodies in my bloodstream. We both knew what that meant: there had been no antibodies in my bloodstream since my last visit to his office and, therefore, no need for plasmapheresis. All the pain, expense, and life endangerment were for naught. I hoped for some sort of apology. This was awkward for both of us. Dr. D said nothing. That upset me, but I was so dependent upon him then that I was afraid to bring it up — afraid I might upset him.
Shortly after I was released from the hospital, the prednisone was phased out. Imuran was the only medication I continued to take. My skin, though not completely healed, looked much better than it had in many months. I continued to see Dr. D about once a week. I was grateful to him for having saved my life. Still, it bothered me that he was unable to acknowledge the mistake of proceeding with the plasmapheresis. I would pay for that mistake, to the tune of $100 a month, for years.
Illustration of doctors
After taking Imuran for approximately three months, I occasionally began feeling dizzy and faint. Lab tests indicated liver damage. Imuran would not be a permanent solution. What next? We discussed gold shots. From what Dr. D had told me and everything I’d read about it, I knew gold was the last thing I’d ever want to try. It could be extremely toxic and expensive. When Dr. D saw how depressed I’d become, he told me "I love you,” then repeated his offer to continue to treat me -- even if I didn’t have the money to pay him. His kindness was almost overwhelming. I left his office deeply touched.
After thinking about all the nice things Dr. D had said and done for me, I decided I wanted to give him a gift. I made a wall hanging out of beads, shells, feathers, and colored fleece. It took two days to create, and I was quite pleased with the way it turned out. I dropped it off at his office one afternoon. Two days later I got an early-morning phone call. I recognized Dr. D’s voice immediately. He said, “I got the gift. I want you to come pick it up.” What? “I don’t accept gifts from my patients. Take it back or find yourself another doctor.”
I tried to explain that it was just a token of appreciation for having taken the place of the family and friends who’d deserted me, for helping me through the worst time of my life.... I wasn’t getting through. He refused to back down. I told him that I’d feel embarrassed and humiliated if I went to retrieve it. He repeated his ultimatum. Suddenly I realized I couldn’t go back. In that short phone conversation, he’d managed to destroy all the trust and respect of our relationship. I told him, “Throw it away, I’ll find another doctor.”
Later that morning I went to see my pharmacist. I was able to con him into giving me a refill of Imuran. An extra month’s supply bought me a little time before I’d have to start looking around for Dr. D’s replacement.
I replayed that conversation over and over in my mind. I suppose if I had given him an expensive gift, I could understand if he thought it was unethical to keep it. Or if I’d given him something wildly inappropriate — like edible underwear — he’d have a right to feel offended. But such a violent reaction to a wall hanging? It didn’t make sense.
The last time I saw Dr. D (as his patient anyway) was on May 26, 1988. I called my internist to ask for his recommendation of another suitable dermatologist. He gave me the name of Dr. E, affiliated with one of San Diego’s top medical institutions. I had to wait several weeks to be seen by him. After more than three months without medical attention, my face wasn’t looking very good. During my first visit with Dr. E, we discussed gold therapy. That seemed to be the only thing left untried. But first he wanted to review my medical records. I thought Dr. D had sent them weeks ago — apparently not.
I called Dr. D’s office, and they mailed the records to me only a few days before my next appointment. I didn’t want to waste another office visit with Dr. E, so I decided to go through the records myself and make up a chart so he could review my history quickly and easily. I made columns for all the meds I’d taken, along with dates, dosages, side-effects experienced, etc.
In the process of reviewing my file, I discovered the real kicker. The results of my second anti-epidermal test were missing. Test number three, the one done in the hospital, was mislabeled number two. And only one of Dr. D’s hospital visits had been recorded — the second. I was convinced this was done to cover up the plasmapheresis fiasco. Also conspicuous by their absence were all of the lab test results that showed the liver damage that occurred while taking the Dapsone and Imuran.
For medical records to have any value, they must give a complete and accurate account of what transpired. Dr. D apparently sought to cover himself by leaving out anything that might reflect poorly on his medical judgment. He almost got away with it. His only slip-up was to send the records to me. But then, how many patients ever take the time to read their files? And of those who do, how many understand what they’re reading? How many people can even read their doctor’s handwriting?
Fuming, I called Dr. D immediately to demand the rest of my file. He feigned ignorance. I told him that there had been three anti-epidermal tests performed, and I needed a copy of the results from my second test. He said, “Dear, you’re mistaken. There were only two anti-epidermals, and you have in your possession copies of both of them.” I couldn’t stand it. I said, “Look, I have right here in front of me three receipts. I paid for three tests. I’d say that’s pretty solid evidence that I took three tests. Now either I get a copy of that second test today or you’ll be hearing from my attorney.” After a brief silence, I heard what sounded like a frantic shuffling of papers. Then with as much nonchalance as he could muster, Dr. D said, “Oh, this must be what you’re talking about. I’ll have my secretary make copies — ” “Fine,” I cut in. “I’ll be by to pick them up in about an hour.”
Once I’d completed the chart and studied it carefully, I began to suspect that there was some connection between the niacinamide I’d taken for a week prior to plasmapheresis and the dramatic improvement in my appearance that I’d noticed at the time. I could not be certain that niacinamide had, in fact, brought about the change, since I was taking a few other pills then. But I’d read articles that discussed the use of niacinamide to control other auto-immune diseases, such as rheumatoid arthritis. I’d heard that what worked for one sometimes worked for another. At the very least, I thought, it merited further investigation. I planned to discuss it with Dr. E the next time I went to see him.
Dr. E was surprised when I handed him copies of my medical records. With a marker, I’d highlighted and filled in every detail that Dr. D had sought to conceal and told Dr. E what had happened. His face reddened slightly, perhaps out of embarrassment for his professional colleague. When I asked whether he thought I should report Dr. D to the medical review board, he simply replied, "Do whatever you feel most comfortable with.’’
The discussion then shifted to the use of niacinamide. I told him I needed some time to explore that possible alternative treatment before I would give my consent to gold shots. Reluctantly, Dr. E agreed to give me a week.
I went to a health food store and bought a bottle of lOOmg-strength niacinamide capsules. I began taking 1500mg a day. There was an immediate and undeniable improvement. A few days later, I came across an article that cited a large study undertaken with geriatric patients who were given 3000mg a day. I thought, “If elderly people were able to tolerate that amount, so could I.’’ I immediately doubled my dose. The next morning I woke up vomiting. I couldn’t keep anything down — not even water. Dry heaves wracked my body every few minutes. Dr. E was able to see me, and I drove to his office.
He felt that it wasn’t anything to be concerned about. Perhaps I’d taken too much niacinamide or perhaps I’d eaten something that upset my stomach. His advice was to go home and try to rest. Dissatisfied with his response, I decided to see a new doctor — an internist. She was very kind and thorough in examining me and ordered a battery of tests. After nearly eight hours of waiting, trying not to throw up on the carpeting in the lobby, I was eventually admitted to the hospital. I had hepatitis — liver inflammation — brought on by an overdose of niacinamide. I hadn’t even known that it was possible to O.D. on vitamins. My four-day hospital stay cost more than a Caribbean cruise. But that was okay. If I have to pay for mistakes, they might as well be my own.
Once I was released from the hospital, I resumed taking niacinamide. The next few weeks were spent adjusting my dosage, searching for the optimum level. Healing proceeded steadily, though never fast enough to suit me. It took months for my neck and face to mend. A couple of years passed before the tiny sore on my back finally healed.
I consider myself extremely fortunate to have no facial scarring and only a minimal amount on my neck. I have one small keloid (mass of scar tissue) on my chest, which seems to be gradually disappearing. I’m probably needlessly self-conscious about it at this point, but the cut is very important to me when selecting swimsuits and dresses with plunging necklines. I’ve lost the weight and once again feel attractive.
All this is not to say that I’m cured — or even in remission. I’ve just got it “under control.’’ I continue to take approximately 2000mg of niacinamide in 300 to 400mg doses, spaced as evenly as possible throughout the day. I may have to keep taking it for the rest of my life. So far, my attempts to reduce the dosage have been unsuccessful. I’m hesitant to admit that I still have a problem. I’d rather be completely well. But the fact is, I often have a problem with my tongue, especially in the morning. I get aggravating little tears that affect my speech. Once I’ve taken some niacinamide, they generally heal within a few hours.
I’ve had some adjustments to make — I have to chew my food a little more slowly (which is great for weight control); and some foods I avoid entirely — like nuts — I’d just as soon pop a handful of broken glass into my mouth. But these are things I can live with. When I’m under a lot of stress, I have to take a little more. And I found out the hard way that not all brands are equally effective. But after paying more than $20,000 for medical treatment, $16 a month spent on high-quality vitamins seems a very small price.
I haven’t seen a dermatologist in more than two years. Though, having rocked the boat with Dr. D, what kind of reception could I expect from his colleagues? I don’t know what I’d do if the niacinamide ever stopped working.
I was disappointed that Dr. E made no effort to follow up on my case. After all, I’d found an alternative treatment that (for me at least) has proven to be more effective, less toxic, and much cheaper than steroids or gold injections.
Although physical scarring was minimal, the emotional scars from my experience run deep. I’ll probably never know the joy of being “the prettiest woman alive,’’ but I do know the pain of having been the ugliest. It’s changed me, but who’s to say if for better or for worse? Some things I wish I could forget, but short of a lobotomy, there’s no way I can.
The positive aspect of having survived this ordeal is that I’ve gained strength of character. I’m not as concerned as I once was about other people’s opinions of me. I’m also not as hung up on physical beauty. At the peak of my illness, I often thought, “If I could just snuggle my face into my pillow at night... If I could just take a shower and feel the water splash over my face once more... I’d be the happiest woman in the world!’’ Well, now I want more, and I do believe I live a much fuller life as a result. I take a few more risks and procrastinate less, because I realize that however long I have to live won’t be long enough.