Articles published in the Pemphigus Foundation
Newsletter
1. Introduction and the power of the mind
2. The body
3. The Spirit
by Steve Shapiro
April 1996
I have a dream, to be free of Pemphigus and not have to take any immuno-suppressive drugs.
Hi. My name is Steve Shapiro, I'm 37 years old, and have been Living With Pemphigus since January 1995. Like many of you, I was consistently misdiagnosed until my condition became so serious that I required hospitalization in December 1995. Since then, I have been living on Prednisone, decreasing from 180mg per day to my current 32mg per alternate day, with the hope of weaning off at 3mg per dose every four doses.
In my quest to be free of Pemphigus and the side effects of the drugs taken to control it, I have pledged to myself that I will investigate every possibility of treatment, regardless of how obscure or illogical it may sound.
I am a lower middle class professional person, working in the computer field. My wife is an occupational therapist specializing in young children. We are both vegetarian, with a strong interest in alternative and complementary health care. Having just come out of what I call the survival stage of my infection, we now are starting to have time to investigate alternatives.
I am not a health care professional, and I will not give specific advice concerning treatments to anybody. I will tell you what I have found, what I have done or plan to do to myself in the way of experimental treatment, and what, if any, my results are.
The treatment of any serious disease involves a combination of Mind, Body, and Spirit. Trying to work with a serious condition without addressing all of three areas will not lead to a solution. I don't pretend to be an expert on any of them.
Mind: Mental attitude is extremely important. That is why I say that I am Living With Pemphigus, not suffering from it. Yes, at times the pain was almost unbearable, and when I was admitted to the hospital I was so weak that I couldn't walk. My mouth is still in constant pain, but I'm alive. Life is a precious gift, and every day that I wake up I am thankful. I handle the limitations that PV and drugs have placed on me, and do the best that I can. If I fail at a particular task, I state that I fail and go on.
There is nothing good or positive that can come out of constantly being in the mind set of suffering. In fact, some studies have shown that we can choose to remain ill by placing ourselves in that mind set.
To help me cope with the day-to-day mental distresses that come with Living With Pemphigus, I am involved in a self-help community called Re-Evaluation Counseling, or Peer Counseling. I have been involved in this process for about 5 years. Simply described, Re-Evaluation Counseling (or RC) is a worldwide movement of people helping people. One takes turns being the Client and alternately, the Counselor. Special training is not needed, as it has been found that to be an effective Counselor, all one needs to do is listen to the Client. If somebody will pay attention to me, I can heal myself. Many RC communities exist across the world, and offer training and support at a very low cost. Personally, I was terrified of Counseling someone, but found that doing so actually helped me, because I had to concentrate totally on the Client, thus being temporarily freed of the distress' facing me. If you contact me, I should be able to place you in contact with an RC community somewhere close to where you live.
Humor always helps. My wife and I joke about "Men who ooze and the women who love them." There was nothing funny about bleeding all over everything, but the ability to make light of one's own situation with the people we are close to helps.
A word about support groups. Support groups can be very empowering unless you spend the entire time complaining to each other about how bad off you are. Use counseling to help you with that. Support groups let you know you're not alone, there is comradeship and information to be shared. People who have been Living With Pemphigus (PLWPs) for a long period of time can provide information to people recently diagnosed. Loved ones can be reassured. New treatment options can be discussed. PLWPs have a lot in common with people living with other auto-immune conditions, and can benefit from a common support group if there are not enough people with any one condition to form a group. If there are no groups in your area, consider starting one. A few signs in a local store (health food stores are excellent) or a classified ad can work wonders. If there is no one else Living With Pemphigus in your area, reach out to support groups for other auto-immune diseases, or start your own auto-immune support group. I have found we have a lot in common with people living with other auto-immune conditions.
Confidentiality is a difficult issue. I work with and have many friends who are HIV positive. Many of them felt the need to keep their HIV status hidden from family and employers, while others have gone public. There is no one right answer for everyone. My position is that since PV is much more difficult to hide, secrecy is not possible. Everybody knows I have PV. Since my doctor knows, my insurance company knows. Since my insurance company knows, the Medical Information Bureau knows, and I can't get any more medical insurance. Since I've applied for Social Security Disability, the government knows, and we all know how well the government keeps secrets... I therefore publicly publish my name, and invite contact from other PLWPs and I urge you to do the same. The open exchange of information is one of the strongest weapons we have in our fight to be Pemphigus free. Please let Janet know if she can make your name available to other PLWPs and interested parties.
In Part I, I looked at how the mind affects PV, and some of the things that can be done to reclaim our power over it. In this part, I'll discuss our physical bodies.
Since regular medicine can offer only suppression of the symptoms, and most research focuses on genetics, I will have to look elsewhere for treatment and healing.
The first is alternative treatment to suppress the PV outbreaks. Currently, I have not tried anything, as my PV is currently responding well to regularly decreasing Prednisone dosages. Should the PV become active again as the dose decreases, or I go into remission and it becomes active at some time in the future, I will try one or more of these alternatives before resorting to immuno-suppressive drugs. My doctor has agreed to work with me to determine if any new skin blisters are indeed PV, and will give his honest opinion if the alternatives are working/not working, and if and when starting an immuno-suppressive drug is necessitated. I will not give any specifics about the treatments, as they may be toxic or ineffective, and I do not want anybody racing out to their local health-food store, and thus putting themselves in jeopardy. If you have specific questions or have done similar things, please contact me for further discussion.
Bee-sting therapy: Being stung by bees or injected with bee venom has been of some success to people living with Multiple Sclerosis and arthritis. It is believed that one or more of the chemicals in the venom either acts as a steroid or causes the body to produce steroids. This effect may be of benefit to PLWP.
Herbal Therapy: Several herbs have been documented as helpful against Pemphigus. Since these herbs are normally toxic, they must be prepared and administered by a knowledgeable herbalist. In an ironic twist of fate, hot peppers have been shown to be beneficial to some people with mouth ulcers. I am currently experimenting with different peppers and their extracts to determine if there is any relief to the occasional bullae that develop on the roof of my mouth while eating.
Homeopathy: Using very small doses of substances that when used at their full strength cause blistering symptoms may be of benefit to PLWP. Since each person is different, a different remedy may be used by a trained homeopath to treat patients with the same symptoms. Over-the-counter remedies may be found in most health food stores, and are probably not suited for the treatment of a severe condition such as Pemphigus. People seeking homeopathy for treatment of serious illness should consult a trained homeopathic physician.
If anybody has any experience with these or other modalities, please tell me of your experiences.
Diet: As a vegetarian for more than six years, I have known that there is a strong connection between diet and health. I do not believe the genetic' model as presented by current scientific thinking. Stating that auto-immune diseases such as Pemphigus are predestined to occur due to inherent gene mis-design is disempowering. Rather, I believe that each of us is born with certain genetic weaknesses. When exposed to environmental stresses, such as processed food, artificial additives, excessive amounts of sugar and fats, pollutants, chemical, and mental turmoil, our immune systems may either break down (immune deficiency), resulting in cancers, Candida overgrowth, infections, etc.; or malfunction (auto-immune) and start attacking body tissue as a foreign invader.
Using that model, I am able to take responsibility for my illness, and have the power to do something to correct the conditions that caused it. Hopefully, my system has not been damaged to the point of no return, but I have no way of knowing at this time.
Since I have already eliminated meat from my diet, the next step will be to reduce and eliminate sugars and cooked fats. These substances have been shown to cause a mineral imbalance, inhibit the digestion of proteins, weaken white blood cells and generally place a great deal of stress on the body. As I work with that, I will also try to determine what foods I am allergic too, and remove them from my diet. There is a theory that auto-immune disease is a super-allergic' reaction, one that may have taken years or decades to show up (as opposed to sneezing when exposed to pollen). Dairy products are common allergens, and I tend to avoid them except when taking prednisone, since the dairy may help stop ulcers from developing.
I believe dairy, meat and sugar products to be the major cause of the osteoporosis epidemic in this country and Western Europe, contrary to the statements made by the Meat and Dairy Councils. People taking prednisone are in a catch 22 situation. We know that taking prednisone leads to excaberated osteoporosis symptoms, yet we are told to eat dairy products to protect our digestive systems from the drug, and we tend to eat abnormally large amounts of food, usually containing sugar. I hope to be able to research this dilemma in the near future, since I know that merely throwing calcium into the body is an ineffective way to deal with this problem. Calcium retentive drugs, such as Fosamax and Didronel, like all medications, have serious side effects, and therefore do not present an adequate solution for me.
I realize that much of this information about diet may seem very strange to many of you reading this. If you have any questions, please contact me, and I'll do my best to answer them.
For introductory reading on this subject, I recommend the following two books:
"Lick the Sugar Habit" by Nancy Appleton, ISBN 0-89529-386-2
When I first started my healing journey, I knew that spiritual healing would be part of it. Being a somewhat atheistic person of Jewish descent, I didn't have a single clue as to how to start on that journey. I volunteered to write a three-part article on healing for the PV newsletter, the third one of which (this one) is to deal with the subject of spiritual healing. Now I was really in a quandary. How was I, an apathetic atheist, going to write an article about spiritual healing for such a diverse group of people? People Living with Pemphigus come from all races, cultures and religions. The only thing we appear to have in common is a malfunctioning immune system.
That was five months ago. I've learned a lot in those five months about myself and what the term "spiritual healing" means to me. As with most of my research, what I've learned has left me with more questions than answers. Each time I find an answer, it always leads to two or more new questions. In fact, one clinical study I read came to the conclusion that there are no answers! In the Western world we measure God's presence in our lives by our level of personal comfort, we believe God is here if our prayers are answered. But neither the Judeo-Christian God nor Buddha nor any other spiritual leader or tradition guarantees or encourages a pain-free life. Spiritual teachings encourage us to grow through and past painful experiences, each of which is a spiritual lesson.
The first thing to do is understand what the term spiritual healing means. What is the difference between spirituality and religion? Religion is a group experience. The root of the Latin term lig" means to join together.' Catholicism, Judaism, Muslim, etc. are examples of religions, people joining together. Spirituality, on the other hand, is the internal process with which a person meets their religion. What is happening inside me is my spirituality. If I express that in a group, then my religion is an expression of it. For those of us who were born into a faith, it is possible to be very religious, but not spiritual; that is, we have never had an internal experience of our belief.
One thing to consider is the term "spirit." What is it, do I have one, and why is healing it so important? Western thought presents the spirit or soul as something that leaves the body when we die and continues. That may or may not be so, but if it is, it leads to the following question: What does the spirit do while we are alive? Does it hang around and do nothing but wait for us to die, or does it interact in some way with our physical body? If the spirit becomes sick or injured, can it affect our physical bodies? Can physical stimuli affect the spirit? I am beginning to understand my answers to these questions. My spirit, my energy and my personal power are all one in the same force, and yes, what happens in my life does affect my spirit. If my spirit is weakened, my physical body is also weakened. This is my answer, it is up to you to find your own answers.
The next thing to understand is the difference between healing and curing. A cure occurs when one has successfully controlled or abated the physical progression of an illness. Curing a physical illness, however, does not necessarily mean that the emotional and psychological stresses that were a part of the illness were also alleviated. The process of curing is passive. That is, the patient is inclined to give his or her authority over to the physician and prescribed treatment. The chemical and mechanical treatments of conventional medicine require little conscious participation by the patient. Healing, on the other hand, is an active and internal process that includes investigating one's attitudes, memories, and beliefs with the desire to release all energies that prevent one's full physical, emotional and spiritual recovery. It requires and demands full participation by the patient in his or her own life and the decisions that affect it.
The most important questions which arise are: How did I become ill, and do I want to heal? Energy medicine is a holistic philosophy that teaches, "I am responsible for the creation of my health. I therefore participated, at some level, in the creation of this illness. I can participate in the healing of this illness, which means simultaneously healing my emotional, psychological, physical and spiritual being. I am not a victim ."
It would seem that the obvious answer to the second question, (Do I want to heal?) is yes. After pondering this one, I realized it wasn't so simple. Becoming addicted to our illnesses and wounds is possible. As we cycle deeper into the powerlessness of illness, the more dependent we become on others. We may lose so much of our personal power that it becomes comfortable, and the thought of being healthy becomes scary. Healing requires taking action. It is not a passive event. We are meant to draw on our inner resources, to find the material strength to leave behind our outmoded beliefs and behaviors, and to see ourselves in new healthy ways.
Further reading: Anatomy of the Spirit, by Caroline Myss, Ph.D. ISBN 0-5 17-70391-2
Greetings! The last few months have been very exciting. As I write this, I've just concluded my first real experiment at controlling Pemphigus without drugs, and am preparing to start another experiment shortly. I have learned a lot of information about Pemphigus and myself during this process.
To review: when I was first diagnosed and treated with Prednisone, I set a goal for myself to live without PV and the drugs used to control it. In this article, I'd like to share some of the things I learned, and the processes I've gone through and am going through.
The first thing I did was look and listen. I listened to people's stories about how they have lived with Pemphigus. I listened to stories of people going into remission, and of people dying. I gathered stories of people being helped by B vitamins, herbs, avoiding leeks, and possible links to garlic & onions. I noted cases of Pemphigus apparently induced by drugs or environmental conditions.
I noted similarities between Pemphigus and other inflammatory autoimmune conditions. I read countless books, journal articles and research papers. I even understood a few of them! I linked up with organizations such as the National Organization for Rare Diseases.
This information became like pieces of a jigsaw puzzle. Only I didn't know how many pieces were included, and what the final picture was going to look like!
Several things became clear, if I were to achieve my goal I'd have to:
Actually do something to facilitate it. Rather than pining my hope on formal medical research, I will have to be proactive in healing my own body. To date, medical science has advanced to the point where we can occasionally control the symptoms of autoimmune disease, but not heal the underlying cause. There is no reason to assume this situation will change in the near future.
Change my frame of reference. I adopted the position that something(s) was/were causing my PV. Those things, which I'll call instigators, were acting in combination with my genetic structure to produce aberrant antibodies, which in turn attack my skin. I knew that to stop the reaction, I'd have to find out what those instigators are. Two quotes stand out that exemplify my position: "If you're falling off a cliff, you may as well learn how to fly" and "If you continue to do what you have always done, you will get the same results you have gotten."
Find peace with myself. Traditional medicine uses a very militaristic approach, using terms like battle, victim, attack, etc. Rather than continue to instigate my immune system to improper behavior and then suppress it with drugs, I came to believe that my immune system would stop attacking me once the instigators were removed.
Be willing to accept what I find and change my life accordingly. This is the most difficult part. It proved to be the most important. I also had to be forgiving toward myself and the doctors treating me for making mistakes. Pemphigus, as most auto-immune illnesses, is very poorly understood, and often does not do 'as it is supposed to.'
For brevity, I'll limit my discussion to what I've found and what I've done, and skip the background information on how I found it. This information is based on objective research, but my findings are purely subjective. Please feel free to conduct your own research or contact me if you are interested in applying any of this information to yourself.
The first questions I asked were:
The first thing I did was to change my diet. I was already a vegetarian and consume very little dairy. I stopped eating fried foods and foods containing simple sugars. Once oil is heated above 110? it becomes a dangerous substance. Sugar impairs digestion, weakens the immune system, and pulls calcium from bone tissue, contributing to osteoporosis. I also started eating organic as much as possible, and tried to eat food raw, as opposed to cooked, in order to maximize my nutritional intake. During the times I was unable to chew, I used a blender to puree my food. I noticed a sharp decline in side effects from Prednisone during this time.
I started a series of rather obscure medical tests, administered by doctors of naturopathy. The most important clue came from an IgG4 food immunology blood test.
This is an allergy test wherein a sample of my blood was tested against common foodstuffs for immune reactivity. The test showed that I was reactive to many foods that I was eating every day. I usually got PV outbreaks in my mouth while I ate, and was willing to live with them The very first meal I ate that was free of these "allergic" foods caused very little PV reaction. I knew I was finally on to something.
During a six month period, by eating monomeals (a meal of as much as I wanted of only one item, such as squash, potato, etc) I was able to find that I had immediate reactions (growths in my mouth) to some foods, and not others. In addition, any skin blisters I had would become more viscous within a couple of hours after eating some foods and not others. I concluded that there must be some common item or items in these foods that was causing the reaction.
I looked at many possibilities, including protein, vitamins, minerals, and fatty acids. My research eventually led to a group of compounds called phenolics. Phenolics are molecules that are manufactured by plants that provide taste, color, aroma, and immune-protection for the plant. There are approximately 2,000 known natural phenolic compounds, of which about 90 are considered major.
Normally, our liver metabolizes these compounds and we either use or excrete them. For some reason, my body reacts violently to six of them, causing a reaction that in turn causes Pemphigus. This was a revolutionary find, and I proved the theory on myself by finding and eating foods that do not have any of the compounds to which I react. During this short test period I did not get any reactions in my mouth or on my body.
Now, I was finally onto something, but there are two huge problems with this theory. First, there is limited and often conflicting data available concerning which compounds are in which foods. Second, the compounds I am reactive to are found in most foods, and avoiding them was causing me to become malnourished. Eventually, I had to start eating foods containing the compounds to which I am reactive, and my Pemphigus started coming back.
That led to my first experiment to desensitize myself to these compounds using minute doses of the offending compounds. During this first experiment, I was able to make some progress, but was unable to completely control the reaction. I decided to stop the experiment and resume taking Prednisone until my tissues have had a chance to repair themselves. I intend to start the experiment again in a few weeks.
July 1997
As usual, it's been another exciting three months as I continue to educate myself about pemphigus and my body. As my pemphigus is currently active, I am taking Prednisone. Prednisone has many side effects, and ameliorating those side effects has become an important part of my educational effort. In this column we'll discuss some of the common side effects, and possible natural treatments for them. You are encouraged to educate yourself about these issues and make your own informed decisions.
A side effect can be defined as being an illness induced by a drug. In the case of pemphigus, we take drugs to suppress our immune system, but these drugs affect other parts of our bodies, causing them to malfunction. Pemphigus, in fact, can be caused as a side effect of the drugs d-penicillamine and captopril.
Some of the common side effects of Prednisone are: weight gain, Cushingoid syndrome (pumpkin face), osteoporosis, mood swings, sleeplessness, protein conversion, potassium depletion, frequent urination, gastric distress, diabetic manifestations and muscle tissue loss. Not everybody will have the same side effects, and side effects may be dose dependent.
Luckily, the natural techniques for ameliorating a few of side effects will address many of them. To offset the mineral depletion, it is prudent to supplement both calcium and potassium in chelated form. Chelated minerals are bound with proteins, in a form that your body is used to seeing. Along with these, one should also take magnesium and a Vitamin D supplement to enhance the absorption and metabolism of these minerals.
There are a few things which should be removed from the diet of the person taking Prednisone that an otherwise healthy person may be able to tolerate. These items are: sugar (all forms), artificial additives, dairy, caffeine, refined carbohydrates, hydrogenated fats and all fried foods.
Aside from causing tooth decay, sugar (white sugar, brown sugar, honey, maple syrup, fructose, barley malt, maltodextrin, rice syrup, corn syrup, etc.) depletes minerals and vitamins, elevates cholesterol and blood pressure, causes hyperactivity, irritability, interferes with white cell function, weakens muscles, contributes to fatigue, and stresses the pancreas and adrenal glands.
Artificial chemicals, such as sweeteners and preservatives may be carcinogenic and cause allergic reactions.
Dairy proteins and sugars overstimulate the immune system, causing production of excess mucus. They also interfere with pancreatic function.
Caffeine stresses the adrenal glands, causes severe potassium depletion, interferes with mineral absorption, weakens muscles, causes nervousness, tremors, and loss of sleep.
Refined carbohydrates, such as white flour and white rice deplete minerals by requiring them to be pulled from your bones and tissues to enable their digestion.
Among other effects, hydrogenated fats and fried foods are sources of free radicals and interfere with metabolic and hormonal reactions.
All of these items should be removed from the diet of a person seeking to help themselves recover from a severe illness. Prove it to yourself. You probably have good days and bad days, and are never able to predict which will occur. For a period of one week, abstain from all fried foods. Note how you feel every day. On day 8, eat a generous portion of a fried food, such as potato chips. Note how you feel the next day. If you don't believe your lousy feeling was induced by the fried food, try it again and see if the same thing happens.
You can try the same things with sugar and dairy, but you'll have to abstain at least 3 weeks before challenging them. These substances take longer for your body to clear. Caffeine is a highly addictive substance, and unless it is gradually withdrawn, will produce withdrawal symptoms such as headaches.
What should you eat? To offset the proteins that are converted to carbohydrates, a high quality source of protein should be eaten daily. Beans, nuts, seeds, and small portions of meat can meet this requirement, as can supplemental protein beverages. Eating a filling quantity of a variety of fresh (preferably organic) vegetables, grains, nuts and seeds everyday will provide the nutrients your body needs. Additional supplementation with Essential Fatty Acids, vitamins and minerals, and digestive enzymes should be considered.
For further reading, I suggest "Lick the Sugar Habit" by Nancy Appleton and "The Whole Way to Natural Detoxification" by Jacqueline Krohn, MD
This article represents Steve's personal experience and research. The information given is not medical advice nor is it presented as a personalized course of treatment.