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The idea for this site began after I had participated for several years in the online discussion group sponsored by the International Pemphigus and Pemphigoid Foundation. As I searched the web for more information on pemphigus, I realized that most of the sites were not very encouraging, and tended to emphasize all of the negative aspects of this disease. What started out as an attempt to balance that with my personal story of remission, has grown to include stories from other people who are also in remission. Not all of them followed the same path that I took, but their stories are just as important, and need to be told for the sake of anyone who still suffers from pemphigus or pemphigoid.

I came down with my first symptoms of pemphigus in November, 1994, just two weeks before Thanksgiving. I didn't know it at the time, but it started out as a mild sore throat, and by Thanksgiving Day, my mouth began to fill with blisters and raw spots that were so widespread and painful that I was unable to eat anything solid.

After a biopsy and consultations with several specialists, I was diagnosed a month or so later with pemphigus vulgaris, a variation of pemphigus that mainly affects the mucous membranes. I came under the care of a dermatologist who would guide me through the next three years of treatment for what turned out to be a very painful and stubborn disease. His first step was to put me on a daily dose of prednisone, at 20 mg, along with 100 mg of Dapsone, which turned out to be ineffective, and did nothing to relieve the pain or stop the blisters from spreading. It got to the point where I stopped eating solid food altogether, and could only tolerate bland, liquid formulas, soups, baby food, and occasionally, a cup of yogurt.

By the end of March, 1995, my body and mind were so exhausted from dealing with the pain, going without food, and being unable to sleep, that I was losing hope of ever getting back to normal again. I had become delusional, and thought my body was filled with toxins that needed to be "flushed." I tried fasting as a last resort. That only made things worse. I had already lost 41 pounds, and was so malnourished I could barely get out of bed. I spent the better part of the next two weeks curled up in a fetal position, trying to get comfortable, and getting up only to go to the bathroom, take a shower, or to join my family at night. There were brief moments, lying alone, when I felt as if I was leaving my body. When I was a child, I had a near death drowning experience, and again as a young adult when 6 hours had passed before I was operated on for a burst appendix, so I knew what it was like to be letting go and drifting into another world, and I didn't care. In fact, I think I would have welcomed the relief from the pain, and the sense of peace that was coming over me.

My wife had become so alarmed at my condition that she and my sister contacted the dermatologist and insisted that I be hospitalized. He hadn't seen me for over a month, and wasn't aware of how far I had slipped. He agreed to admit me to the dermatology unit at Yale-New Haven Hospital, where I was put on 80 mg of prednisone, 100 mg of Imuran, Percodan and a time-release morphine capsule, MC Contin. Because these drugs come with a number of side effects, I was also put on Compazine for nausea, Carafate to prevent stomach ulcers, an anti-bacterial rinse, stool softeners and laxatives to prevent constipation, and told to "swish and spit" with Lidocaine before each meal. Within three days, I was strong enough to go home, hopeful that my life would turn around again, but it would be several years before I was finally able to get control of my symptoms and enter into what is now a 14-year remission.

After I was released from the hospital, my treatment plan called for me to continue taking prednisone, at 80mg, until new blisters stopped forming, and then to taper it down very slowly, in increments of 10-20 mg every other month. Each time I tried, I flared up again. Over the next two years, I was not able to get below 20 mg, and it seemed like I was always in pain, and still having difficulty eating and sleeping. The side effects of the drugs had begun to take their toll, and it felt as if I had lost my "6th sense," and didn't know how to take what people were saying. I didn't understand the subtleties, and had lost my ability to read between the lines, or to intuitively know when people were joking, or when they were serious. I became depressed and angry, and during the worst moments, considered my situation hopeless and not worth living for. But there were also times when the higher doses of prednisone would have the opposite effect, and I would feel elated, and extremely happy with my life, even though the burning sensation inside my mouth was a constant reminder that I was still very sick.

Back in the 70's, I had worked as a clinical psychologist in an adolescent treatment program in Dayton, Ohio. My specialty was childhood schizophrenia, and I became very interested in the theories of Dr. Abram Hoffer, and Dr. Humphrey Osmond, two psychiatrists who were experimenting with the use of vitamin B3 to treat schizophrenia.

One of the things that Drs. Hoffer and Osmond pointed out is that when we are faced with a stressful situation, adrenaline is released in the body, causing a "fight or flight" response. The source of the stress does not have to be a physical danger. It can be something as simple as a heavy work schedule, lack of sleep, or anything that touches our nerves, and can become "chronic stress" when it occurs on a daily basis. Over the years, chronic stress can lead to an automatic response beyond our control, and serious psychological and physical disorders can occur. When facing a stressful situation, we either fight back, identify the source of our stress, and stand up to it, or we turn inward, run away, and hope to put off dealing with it until another day. Whatever our response, it is almost always accompanied by the sudden or prolonged release of adrenaline. In the case of schizophrenics, the adrenaline released under stress converts to adrenochrome, which is known to cause hallucinations. Since schizophrenia is considered to be a perceptual disorder, in that the schizophrenic "sees things" that are not there (hallucinations), and believes things that are not true (delusions), Hoffer and Osmond searched for a natural compound that would interfere with the production of adrenochrome. Dr. Hoffer, who was not only a medical doctor trained in psychiatry, but also a biochemist, knew that niacinamide is capable of blocking the conversion of adrenaline to adrenochrome. He and Dr. Osmond began administering large doses of B3 to their patients in Saskatchewan, with great success.

After joining the online discussion group sponsored by IPPF, I was surprised to find that one of the treatment programs for pemphigus also involves the use of niacinamide. Usually, 500-1000 mg of niacinamide is prescribed, 3 x day, along with an antibiotic from the tetracycline family. It is always the amide form of niacin that is used. Since pemphigus is often referred to as "a stress-related" illness, could it be that the release of adrenaline in our situation is also converted to adrenochrome, or a similar compound, causing the immune system to "see things," and to attack healthy tissues and cells?

By 1997, after two years of living with pemphigus, I was determined to get back on my feet again, and willing to try anything. I knew that I needed prednisone, but I was also hoping to find something to add to my routine that might improve my overall health, and help to put this disease behind me. I remembered what I had learned as a psychologist, and how I had experimented with Hoffer and Osmond's vitamins myself, twenty-five years earlier. I had taken up to 1000 mg of niacinamide, the same amount of C, 100 mg of B1, 100 mg of B6, and 200 IU's of E, 3 x day for years, just to see how it would effect me. I did feel much stronger and more energetic on the vitamins than I did when I would go off of them, but the major benefit, as far as I could tell, was that I seemed to think more clearly, as if the oxygen I was breathing was going straight to my brain. If I hadn't experimented on my own, back in the 70's, I might not have thought to go back on the vitamins when I had pemphigus. Knowing they would not hurt me, and were not contraindicated by either prednisone or my immunosuppressant drug, Imuran, I started taking large doses of niacinamide again, along with C and the other vitamins, and waited for a miracle.

After several months, despite the positive effects on my over-all health, my blisters were no better than when I had started, and I wasn't feeling the kind of changes I had expected. I began to research the healing process, trying to understand how the body deals with wounds and open sores, and discovered that zinc was used by many burn units across the country to treat severe burn injuries, and also to speed the healing of open wounds. It seemed to me that the blisters in my mouth were very much like burns. It was the same kind of pain, and they were definitely open wounds that never seemed to heal, so I added one tab of Solgar's "zinc 22" to my daily routine, and began experimenting again.

I had been keeping a journal, and writing down any changes in my treatment plan and my health from the beginning, and by the end of 1997, I had a very detailed account of my experience with pemphigus up to that point. I had a record of all of my medications, how I was feeling, and whether or not I was improving on a day-to-day basis. After re-reading everything I had written, I saw a definite pattern: when I took zinc at 22mg consistently for 3-4 weeks, my notes were always upbeat and positive. All of the improvements seemed to come after taking Hoffer and Osmond's vitamins together with zinc, so I decided to stick to that routine, and after 3 months, I could literally see the sores in my mouth beginning to heal. I examined them with a flashlight as often as possible, and was very excited to see that rings of white tissue were surrounding the lesions and seemed to be closing in on them. As the weeks went by, the redness at the center of each lesion became completely white, and then pink. Not only did I have physical evidence that I was improving, but something inside me "knew" that pemphigus was on its way out of my body. It seemed to be following the same path it had taken at the onset, but in reverse. The most recent sores were the first to heal, followed by the older lesions, and by the end of 3 months, everything seemed to be under control again. Not coincidentally, I was able to taper prednisone to 5 mg, and went off of it completely in January, 1998. I have not had a single blister since then, except for a brief flare-up in February of that year that lasted less than three weeks, and after 14 years of relatively perfect health, I consider myself cured. (updated 12-28-11)

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