December 1995 Eczema Mailing List Archive

Date: Tue, 19 Dec 1995 18:16:20 -0500 From: Alan Subject: Re: Info for Shelley and Alan 

I was invited by my doctor to be seen by some other doctors at the UC SF. They are supposed to talk to me and ask questions. Shelly and I thought it might be a good time to tell these doctors to look at the emotional side of AD together with whatever treatments they would provide. Wish us luck! 

Date: Wed, 20 Dec 1995 16:51:27 -0500 From: Shelley Subject: Re: genes for eczema 

Re: a previous posting about a gene for eczema: I used to work as the managing editor for The American Journal of Human Genetics and as far as I know, there is no "one gene" for eczema. Eczema is what's considered a multifactorial condition, which means that it is not caused by a simple genetic switch. People with eczema have an excess of Immunoglobulin E, which is triggered by systemic reaction to various stimuli. If it was a simple genetic condition, there would be an attempt to use gene therapy, which is becoming the best treatment for problems truly caused by a gene switched on or off. 

Date: Wed, 20 Dec 1995 16:58:24 -0500 From: Ralph Subject: Too much IgE? 

Is there any way to "zap" the excess IgE? I suppose there would be a problem distinguising between good, helpful, necessary IgE and bad, un-helpful, unnecessary IgE. I wonder what would happen if a person had too little IgE instead of too much... 

Date: Thu, 21 Dec 1995 08:14:19 -0500 From: Ike Subject: Excessive IgE 

Do you think there are excessive IgE genes concentrated around inner arms, back of knees, neck, hands, etc. (i.e., typical areas of eczema symptoms). 

Ralph asked a very good question. What would happen if we intensionally reduced IgE for eczema sufferers? Or, disperse the gene all over the body in such a way that IgE "dilutes". Can some other gene(s) take over vital functions of IgE? Am I making ignorant statements here? 

Date: Sat, 23 Dec 1995 00:31:24 EST From: Gilbert Subject: Re: new list-server 

Also, there have been several postings mentioning IgE. I don't want to muddy the waters but would like to point out that this immunoglobulin, i.e., antibody, plays only a part roll in a much larger theater of operations. 

One subscriber queried whether it would be possible or advisable to reduce the amount of IgE in folks with eczema. It would be neither possible nor advisable. We need to remember that it's only in severe disease states that serum IgE need be measured, and then it's not to address atopic states such as eczema (atopic dermatitis), but to rule out a condition known as "Hyper-IgE Syndrome" which is, fortunately, a different kettle of fish. 

In fact, serum level IgE is only "sometimes" elevated in "some" who have eczema. The root problem in our puzzling banner topic is hypersensitivity which here means that we who have eczema "over-respond" to stimuli. When IgE and antigen cross-link in attachment to tissue mast cells and basophils we mount an exaggerated immune response. Non atopic folk (~80-99%, depending on how we're calling the cards) have the same cellular interactions with antibody but don't have to suffer any consequences. That's what we mean by hypersensitivity in this regard. 

Actually, if we did not have IgE in the minuscule amounts we do find it, we'd be terribly exposed to parasitic infections and infestation with helminths (i.e., all sorts of worms). Interestingly, IgE is the only class of antibody in which there is not a pathology of insufficient production. 

Since we don't have a good handle on the basic pathophysiology of atopia yet -- we'll need to wait for further developments in our understanding of immune function and allied genetics -- we need to remember that diagnosis is based not on chemistry results so much as it is on narrative history: Family history (ex., how about our parents and relatives)?; other allergies also present (ex. asthma or allergic rhinitis)?; prior history of eczema often dating back to early and adolescent years; and, patters of eruption. 

Eczema is the surface expression (i.e., skin level) of an immune-based hypersensitivity. 

Date: Sun, 24 Dec 1995 23:55:51 -0500 From: Ralph Subject: Re: new list-server 

Maybe our skin "thinks" we have little worms under it. It certainly feels itchy enough at times, and the urge to dig in the nails could be to get rid of those (nonexistent) little critters! 

On the other hand, maybe the real worms would be preferable to what we have now (just kidding! Really! I think) 

Date: Mon, 25 Dec 1995 00:16:10 -0500 From: Ralph Subject: reply 

>> ... I have had chronic eczema on the palms of my hands and the soles of my feet for six years. My doctor at first gave me prednisone orally to treat it, but I also have a problem with reflux and could not tolerate it. The only topical ointment that seems to help is Diprolene. I try not to use it any more than necessary. I would like to find a treatment that does not involve the use of steroids. << 

My contribution: has your doctor tried an orally-administered antibiotic? That has been very helpful to me. I have had hand eczema for about ten years. I just finished a 7-day course of Biaxin, and my hands are now almost entirely clear. It won't last forever, but I will probably have at least a month of relative improvement. That's worth a lot in my book. 

I also use Diprolene, but like you, I try to use as little as possible, since it obviously weakens the skin. 

Date: Mon, 25 Dec 1995 13:22:56 -0500 From: Shelley Subject: Re: IgE and doctors 

I'm so glad that someone out there knows more about IgE than I do. Thanks Gil for sharing the recent info. It's sad that so many of us who have had this condition our entire lives or at least many years know so little about exactly what causes it. The doctors don't know a lot either, but they don't usually offer to tell you what little they DO know. Alan and I recently went down to the University of California Medical Center where Alan was the subject of Grand Rounds, where a bunch of doctors come around and examine interesting cases. It was the first one for Alan. I have been a subject many times before. It was a great experience for me to share with Alan. He allowed me to sit in the examining room with him while the doctors came through and peppered him with questions. In the beginning, we tried to talk to one doctor about this on-line network and the importance of the emotional aspects of our condition. He gave us about 30 seconds of his time, took the info about the new e-mail address, and said he'd tell other patients about it. Then the other doctors started pouring in, and sure enough, the first one was quite rude to Alan, ignoring him as a person, just quickly perused his body, made an exclamation of disgust and walked out. I have had this happen to me so many times in the past. I never had the courage to speak out in protest. In the past I always wound up enduring the insults and later sobbing in the ladies room. But Alan handled it so well. He immediately spoke up to the next group of doctors who entered the room, and told them what had just happened and how that hurt him, and then that group treated him with respect. They said hello, thanks for coming in, and addressed him directly, looking him in the eyes. At the end of the session, Alan and I decided to go to the conference room where all the doctors were getting a lecture about the patients. We were refused entrance by a nurse, but when we insisted, she allowed us to write a note asking permission for us to come in, and we finally had the opportunity at the end of the lecture. Alan went up to the front and made a beautiful simple statement about what had happened and how important it was to be aware of the patient's emotional response to the doctor's treatment. There was applause at the end of his short speech. The only thing that marred it was when the head doctor followed Alan's statement by saying Yes, this can be a problem for patients with low self-esteem. I wanted to shout out, NO, don't trivialize this by saying it's only an issue for people with low self-esteem. If Alan had low self-esteem he would never have had the balls to get up there and say something to the group. Alan and I went to get a cup of coffee and talked about what had happened. For me, the experience was inspiring as well as discouraging. It felt so good to not be the only one with a sense of outrage, and following through on that emotion was exhilarating. But the doctors' resistance to education is daunting. It really hurts to know that I am just a body to the doctors before whom I must stand naked. The soul inside that body is irrelevant to the doctors. And I am supposed to be grateful for their "help"! There is one bit of good news I can add. I have discovered a book called The Wounded Storyteller by Arthur Frank, which is about the experience of chronically ill patients and their doctors, and I have already written a letter to Dr. Frank. So there's some hope for further progress....From Shelley 

Date: Mon, 25 Dec 1995 16:00:34 -0500 From: Ralph Subject: Re: IgE and doctors 

>> In the beginning, we tried to talk to one doctor about this on-line network and the importance of the emotional aspects of our condition. He gave us about 30 seconds of his time, took the info about the new e-mail address, and said he'd tell other patients about it. << 

Well, that might amount to something, and it might not. Sometimes ancillary personnel are more helpful than doctors in that regard. Around the Hospital of the University of Pennsylvania, where I sometimes do computer consulting, there are notices for various support groups for people with chronic diseases. Are there any such groups at UCSF? If so, then contacting someone who participates in that realm might be helpful. 

>> Then the other doctors started pouring in, and sure enough, the first one was quite rude to Alan, ignoring him as a person, just quickly perused his body, made an exclamation of disgust and walked out. << 

This astounds me, although something similar once happened to me (not connected to eczema). My wife is a doctor, and I know for sure that she would never do such a thing. I will ask her how she thinks it should be dealt with. 

>> But Alan handled it so well. He immediately spoke up to the next group of doctors who entered the room, and told them what had just happened and how that hurt him, and then that group treated him with respect. << 

Alan, great job! 

>> ...Alan went up to the front and made a beautiful simple statement about what had happened and how important it was to be aware of the patient's emotional response to the doctor's treatment. There was applause at the end of his short speech. The only thing that marred it was when the head doctor followed Alan's statement by saying Yes, this can be a problem for patients with low self-esteem. << 

Truly incredible. That "head doctor" needs counseling. I really mean this. It is inexcusable to be so arrogant and just plain rude! 

>> I wanted to shout out, NO, don't trivialize this by saying it's only an issue for people with low self-esteem. << 

Shelley, next time something like that happens, I for one encourage you to do exactly that: shout, "NO". 

Could we write this jerk, er, excuse me, this esteemed physician a letter? 

>> If Alan had low self-esteem he would never have had the balls to get up there and say something to the group. << 

Well said. Shelley and Alan, thanks so much for your willingness to "go public" with this problem, at least before a group of doctors. And thanks for relating it here. I feel... how can I put this... broadened and inspired by reading your message. 

Date: Tue, 26 Dec 1995 17:05:10 EST From: Wayne Subject: UC Medical Center Experience 

Shelley & Alan: Wow! Thanks for the narrative. Thanks for speaking up. Unfortunately your account occurs too often. I wonder how much information toward solving the puzzle is missed when the problem solver refuses to use all the pieces of the puzzle that is readily available. That is like going to a symphony and only listening for one note. Wayne, 8/10, 12/26/95 

Date: Tue, 26 Dec 1995 17:19:12 EST From: Wayne Subject: NIAMS Information Clearinghouse 

For an informative packet on eczema call NIAMS (National Arthritis & Musculoskeletal & Skin Diseases) in Bethesda, Maryland at 301-495-4484. Ask for the Eczema Information Packet. It's free. You pay for the call.You'll get the nice packet within two weeks. Wayne 8/10, 12/26/95 

Date: Tue, 26 Dec 1995 17:37:18 -0600 From: Kristen Subject: Re: NIAMS Information Clearinghouse 

Hi Wayne, Does this packet offer anything new and interesting that most of us don't already know? Some of the elementary stuff that is published in packets is usually for parents of newborns who have never heard of eczema before and haven't an inkling what they are in for. Kris 

Date: Tue, 26 Dec 1995 17:43:55 -0600 From: Kristen Subject: Re: new list-server 

>> Eczema is the surface expression (i.e., skin level) of an immune-based hypersensitivity. Gilbert << 

Question: In your reference to narrative history, i.e., family history, I take it that you are inferring eczema is familial, hence, inherited, hence, of genetic predisposition so that my earlier allusion to a gene being isolated by English researchers within the past couple of years is not a fairy tale. Am I correct? I don't believe my dermatologist would tell me a bald-faced lie about this development! 

Date: Wed, 27 Dec 1995 12:12:13 -0500 From: Shelley Subject: Re: hand and foot eczema 

Eczema only on palms of hands and soles of feet could mean complications by some kind of fungus. Years ago I had a strange eczema on soles of my feet that was different from rest of my eczema and it turned out to be complicated by some kind of fungus. I can't remember the name of the medication I took, but it worked. Perhaps you should make sure fungus has been ruled out. Also, I use Elocon cream when I want to use a lower strength steroid than Diprolene. I've used both for many years. 

Date: Wed, 27 Dec 1995 15:39:23 -0500 From: Ike Subject: Palm/Sole Eczema 

Shelley, you wrote that eczema on your sole was different than other-location eczema, and said that it was related to some type of fungus. Could you describe the condition you had, if you don't mind me asking. 

I've developed palm eczema in recent years -- and it is different compared with, for example, my inner arms. On my palms, I see so many tiny (about 1/16 of an inch in diameter) bubbles just beneath the skin level. Usually I apply hydrocortisone on the surface, but sometimes I try to puncture each bubble with a needle and apply the medication. On the latter case, within minutes, those bubbled areas turn into white circular swelling inflammation (about 1/4 of an inch in diameter), overlapping one another. One or two days later, the medicated-skin layer becomes hard and starts to peel -- but the tiny bubbles are still there. 

When I was a teenager, the skin around my finger tips was always peeling. I don't think I remember a day, during that period, when I had "clean" finger tips. I wondered one time how I would ever be finger printed properly (not that I wanted to, but just in case). Now, it's my palms -- good thing people usually don't require palm prints. 

Date: Wed, 27 Dec 1995 16:11:40 -0500 From: Robert Subject: Re: Palm/Sole Eczema 

Ike, I sometimes get the same condition (bubbles) in my hands and sometimes in my feet when eczema is coming on "strong"...the onset of a new episode. I also puncture some of the bubbles, but, mainly for relief and in some form, anger at what is happening. I know what is going to follow. A couple of times my dermatologist tested my feet for fungus and never found that to be a problem. My bubbles take on a different form and become a general "open eczema wounded area" and it becomes a matter of time before any healing takes place...often my skin will crack and remain open cracks for long periods of time. I also apply a corisone creme to the area and have found that bandaging specific areas can promote healing more rapidly. 

Date: Thu, 28 Dec 1995 11:45:26 -0500 From: Shelley Subject: Re: Information 

Yes, I am also interested in the content of what is offered as "information". I agree with Kris that most of the time these info packets tell us nothing new. I stopped giving money to the Eczema Foundation in Oregon when I discovered that they had spent thousands of dollars on printing a basically useless brochure for doctor's offices. You know the kind I mean.... Anyway, I am currently trying to compose a brochure written by eczema patients, for eczema patients, that will convey more important and useful information. Send me any tips or advice that you would like to see included. Tell me what you would have wanted to learn from a brochure at the doctor's office...FROM Shelley 

Date: Thu, 28 Dec 1995 11:45:56 -0500 From: Shelley Subject: Re: genes 

I hope Gil responds to the question about genes because he probably knows more than I do. What little I know is that yes, eczema is a genetic condition, but that does not mean that there is one gene for eczema. Those are two different things. A gene is a tiny piece of DNA, a group of amino acid proteins, that conveys a message about the functioning of the body. OK, now with some conditions, if that one piece of DNA has an incorrect message, your body will develop disease. For example, cystic fibrosis, where doctors are learning to use gene therapy to "fix" the condition by substituting DNA with the correct message. Everybody with cystic fibrosis has the same condition with the same problems. Now with eczema, it's not that simple. What is inherited is probably a number of different genes, that when combined with various other environmental factors, create eczema. This is why every person with eczema has different symptoms and different complications. That's why it's so difficult to treat. There's no cure that will "fix" all of us because there's not just one gene involved. Doctors label all our conditions "eczema" because there are certain aspects in common, but we each have a unique situation. What is inherited is the susceptibility to develop a combination of eczema symptoms. Eczema is a multifactorial condition. Many factors contribute to its creation. With cystic fibrosis, if you have the gene, you get the disease. It's that simple. With eczema, you have not inherited a definite message with a clear outcome. You have inherited a number of genes that leave you susceptible to varying effects. Gil, am I right? From Shelley 

Date: Thu, 28 Dec 1995 13:21:01 -0500 From: Ike Subject: Brochure 

Shelley, I must first thank you for even thinking about creating a brochure. 

As you know well, at this day and age, if you visit a doctor most likely you will have less than five minutes. The doctors are usually running to the next patient. 

If I can have ten more minutes with my doctor, I'd like to hear success stories. Former eczema patients who no longer have this terrible disease. I would be interested in a brief summary of his/her eczema condition and how that person was able to get rid of it. If unknown, what he/she thinks did the trick. In addition, I like to know more about adverse effects, or side effects, of using cortisone. Of course, everyone's cortisone tolerance level may be different. But surely, someone must know an approximate dosage level, and duration, that can be regarded as harmful. What kind of side effects are there? I only heard two kinds -- thinning of skin and blurry vision; neither one affected me, yet. Therefore, I am concerned that these effects might come to me. 

Thanks again, Shelley. 

Date: Thu, 28 Dec 1995 13:32:31 -0500 From: Robert Subject: Re: Brochure 

Some other side effects of cortisone include cataracts, diabetes (if u are prone towards it, it will bring it on while u are taking the stuff)...since cortisone suppresses the immune system, if u are on it for extended periods of time it allows any chronic virus infections (such as hepatitis to reek damage as the virus is no longer suppressed). 

Date: Thu, 28 Dec 1995 14:55:42 -0500 From: Ralph Subject: Re: Palm/Sole Eczema 

>> On my palms, I see so many tiny (about 1/16 of an inch in diameter) bubbles just beneath the skin level. << 

I agree with Shelley that this kind of thing might very well be fungus-linked. I have used some over-the-counter antifungals, intended for athlete's foot, with good results. Sometimes that cream also seems to help my regular eczema, too. 

Ralph 

Date: Thu, 28 Dec 1995 14:40:15 -0600 From: Kristen Subject: Re: Brochure 

To add to the list of side effects: prolonged cortisone use will create kidney damage, extensive osteoporosis (which may result in hip joint replacements, for one example), and overuse to the skin used in the same place and the same dose will create intense inflammation, extensive edema, profuse heat and burning, with subsequent friability of the skin, so you then will have another skin condition on top of the eczema you started with. And maybe a bacterial infection on top of all that to further complicate matters. Kris 

Date: Thu, 28 Dec 1995 14:42:09 -0600 From: Kristen Subject: Re: Brochure 

An addendum: Internal cortisone gives the internal symptoms; while topical cortisone gives you new skin problems if overused in too strong a cream strength. Kristen 

Date: Thu, 28 Dec 1995 14:44:40 -0600 From: Kristen Subject: Re: Brochure 

Ike, Wish there were better news, but my doctor told me in 1960 that "there is no cure" and "you have to learn to live with it." So I hope you aren't spending too much time looking for ex-eczematous persons out there! Kristen 

Date: Thu, 28 Dec 1995 16:08:56 -0500 From: Robert Subject: Re: Brochure 

Yes, the only cures are natural ones...I have had long periods (years) where I have been eczema less (completely), only to have it return for no apparent reason (in different forms and/or intensities). Also, I believe the literature states that many children "outgrow" eczema, the majority I believe. I do believe that there may very well be a cure (or partial cure) coming out of all the research associated with Aids and other immune related diseases which is going on today. I see alot of articles about research associated with the immune system, and something good may fall out of this for all of us. 

Date: Thu, 28 Dec 1995 19:56:21 EST From: Gilbert Subject: Re: genes 

Shelley, 

you hit it on the nose and pretty much tell it exactly the way it ought to be told. It would seem we all want a magic bullet and therefore a discrete and unitary "target" so we could -- somehow -- "zap" it. Your letter needs our re-reading to remind us. 

Actually, I thought I did respond, or let me qualify that... I wrote a response which I sent off -- probably it went to an individual's personal address. I'll see if I can find a copy of it. If so, I'll send it up -- though you've "stolen my thunder" <g>. 

Date: Thu, 28 Dec 1995 19:57:53 EST Gilbert Subject: genes & stuff -- ECZEMA2.GJS 

Hello, Kristen. 

What you said on the forum is quite accurate. Yes, eczema and other atopic conditions are symptoms of underlying issues, one of which is definitely genetic: i.e., we inherit variations of genes (alleles) which code for proteins and enzymes that, in turn, constitute functional structures such as tissues and organs. The skin is every bit as much an organ as the heart or the spleen. There are a number of "diseases" where the "fault" can be traced to one defective gene, but it is unlikely that atopia belongs to this group where "one mistake in the master plan" accounts for the whole panoply of a disease with so many symptoms and manifestations. 

And, yes, a gene has been isolated which does seem to play a role in the composite of what we call eczema. Your dermatologist has not misled you. At the same time, the forum member who responded to your posting with the observation that eczema is "multifactorial" and that a single gene is unlikely to account for the whole story, was also speaking accurately. 

Neither you, Kristen, nor your dermatologist, nor the other forum member has misstated the issue. At worst, we have merely remarked on specific aspects of the issue at the possible expense of omitting some others that also need must claim some degree of parity. 

Moreover, notice the amazing variety in which "atopia" expresses itself! With eczema, it's the skin; with rhinitis, it's a subset of skin called mucosa; with asthma it's smooth muscle and other tissues in the lungs. And, that's just for openers. For example, if eczema were accountable to a single gene, why do some people "outgrow" it, and why does it have behaviors of periodicity (here are all the maybe yes, maybe no issues we've come to expect and have to 'put up with'), and why only "up to 70 percent" of patients with eczema have a "family history" -- why not 100 percent? Diseases where one gene = THE Culprit are diseases that hit at the watershed of an Either/Or, i.e., we "really do have" or "do not have at all." But this linear Either/Or seems to elude atopia. [I even wonder if that doesn't account for some of the myopic, linear misunderstandings that some crass "outsiders" express toward us -- like the self-serving rudeness of which Shelly has been speaking so eloquently. 

No doubt, further genetic discoveries will only benefit us. There are probably a number of genes needing scrutiny. It will probably be -- these are my 'subjective' musings -- the genetics of the immune system and further genetic and physiological understanding of its sister, the "nervous system" which will give us "tools that work" to address properly what we call "the atopic state." 

To that end, science would then also be explaining one of the great mysteries of immune physiology which can be summed up with a question: Why is it that the system [the immune system] whose purpose it is to protect the body in its integrity of individuality against threats of invasion and contamination from the hostile outside world of otherness sometimes "overreact" to harmless encounters it already knows are foreign but benign . . . what signals are being mistaken here and why, and how do we re-educate the system so that it will continue to ward off harm but will cease to go into a protective mode when there's no need for self-protection? 

Date: Thu, 28 Dec 1995 22:33:31 -0500 From: Ralph Subject: Re: genes & stuff -- ECZEMA2.GJS 

>> Why is it that the system [the immune system] whose purpose it is to protect the body in its integrity of individuality against threats of invasion and contamination from the hostile outside world of otherness sometimes "overreact" to harmless encounters it already knows are foreign but benign . . . what signals are being mistaken here and why, and how do we re-educate the system so that it will continue to ward off harm but will cease to go into a protective mode when there's no need for self-protection? << 

I just want to comment on the above from an engineer's point of view. 

My intuition about systems of defense tells me that any successful bulwark against invasion has to be a compromise between ineffectiveness and hypersensitivity. That is, I would actually be surprised if there were not instances of both under- and over-protection by the immune system. Otherwise, seems to me, it would not be adjusted properly. 

Assuming that the immune system is not perfect -- and what system is? -- it should be about as likely to give a "false positive" as a "false negative". 

We victims of atopie happen to be on the hypersensitive side of the fence. People with compromised immune systems are on the hypo-sensitive side. That is worse, in most cases. 

I'm guessing that it will never be possible to adjust the immune system for smooth and trouble-free operation in every circumstance. Of course, that doesn't mean that our problem will never be solved! Perish the thought. But if we do ever find a way to "turn down the volume" on our immune responses, I suspect there will be other side effects, possibly sobering ones, to deal with. 

Date: Thu, 28 Dec 1995 23:12:17 EST From: Gilbert Subject: Critter: Cortisone 

What a cornucopia of messages re: cortisone . . . I love it! Much of what's being said here deserves a bookmark in the memory. The long-term use of cortisones, and especially, their systemic use (i.e., taken by mouth) can, indeed, lead to a litany of bodily harms, a number of which have gotten mentioned in the letters posted today, 12/28/95. Our body produces cortisone as a a potent regulatory hormone. As such, it enters into powerful metabolic assignments which involve sugar and protein metabolism, cell and tissue growth (it interacts with thyroid hormones and so-called growth hormones, and, by suppressing inflammation, it also enters into the neuro-immune regulatory arena). Its benefits can come at some real cost, yet, used judiciously for short-term therapy, it can be a needed boon. 

I just want to take this opportunity to urge everyone to learn as much as possible about the medications they are taking (their indications and contraindications; their uses and misuses; their intended effects and unwanted side-effects, both short-term and long-term). Physicians often don't take the time needed to do so. That's unfortunate. But the buck stops with us because we're the ones who are in charge of our bodies and our health. And this ownership of self brings me to also want to say that we no longer live in the father-knows-best word where the physician is the surrogate deity. Ours is a more multidimensional world where we're the consumer who hires and fires our employees. Inasmuch as you pay your physician, (s)he is your employee. But the nature of our enculturation seems to prompt us to think that our diseases and our discomforts must be paid for in measures of atonement rather than in the measure of money or service. Therefore, we are shy and retreat exactly where we need to be informed and even appropriately assertive. 

A few years ago I wrote a little paper on the glucocorticoids (i.e., cortisones). If I can find it, I'll send it up -- for what it's worth. But thinking about it actually brings me to another thought: Here I sit with multiple CD-ROMs and shelves-full of medical and pharmacological references and texts, yet I cannot think of even one really good book on medicines written for lay folk or patients. The ones I've seen written for lay people are mealy-mouthed and so over-cautious as to err on the side of simple-mindedness and generalities. I'll give it some further thought. Maybe some of you have run across a good reference book or two. If so, l (for one) would like to know about it. 

Date: Fri, 29 Dec 1995 02:21:28 EST From: Gilbert Subject: Re: genes & stuff -- ECZ 

You make some very good points, Ralph, 

which are as true in physiology as in engineering. Systems are systems, whether biological or not. When it comes to biology, this exquisite fine tuning and systems maintenance is termed "homeostasis," and it involves the principle of "constancy in change." Philosophically put, Heidegger termed it with the observation, "it is Difference which defines Identity." 

Date: Fri, 29 Dec 1995 10:02:39 -0500 From: Robert Subject: Overactive Immune System 

After reading all these somewhat technical notes regarding the immune system, etc., I am wondering the following---I literally don't get colds anymore. I can feel one coming on and after an hour or two my body seems to take care of it (perhaps an overactive immune system). My question is, are there other fellow eczema sufferers who don't get colds and/or they last for very short periods of time? 

Date: Fri, 29 Dec 1995 11:45:41 -0500 From: Ralph Subject: Re: Overactive Immune System 

I wish. I am just getting over a long bout with the 'flu, or whatever that was. Of course, I only have hand eczema. I don't think my hands got sick. 

Actually, I notice the reverse, sort of: my eczema seems to be better when I am sick. The immune system is too busy doing other things, fighting off the illness, to bother hyperreacting to my skin? 

Date: Fri, 29 Dec 1995 12:05:25 -0500 From: Robert Subject: Re: Overactive Immune System 

When I do get sick (such as a flu) and when I especially have a temperature, my eczema also gets better. 

Date: Fri, 29 Dec 1995 12:23:25 -0500 From: Shelley Subject: Re: Palm/Sole Eczema 

The bubble condition described by Ike and Robert sounds vaguely familiar, but not connected with my foot eczema. I think I had the bubble condition on my palms, at that meaty place just below the thumb, at some point. After 39 years it's hard to keep track. What I remember about the foot eczema is the skin on my soles peeling off in huge strips. It was like my feet were rejecting the old skin like a snake, and kept rejecting it until the brand-new skin had proved itself acceptable. I know that sounds weird but that's how I remember it felt. 

Date: Fri, 29 Dec 1995 16:03:19 EST From: Wayne Subject: Best Wishes for the New Year 

To all: Often reading the eczema e-mail makes me feel suspended in time. In a way it is making up for conversations unspoken for many years...for me, 50 years. Best wishes to everyone for a new year that will bring us vibrant skin. Wayne. (8.2/10). 12/29/95 

Date: Fri, 29 Dec 1995 15:25:04 -0500 From: Shelley Subject: Re: genes & engineers 

Ralph, the perspective of an engineer seems highly appropriate. (And "genetic engineering" is the term for gene therapy work.) What you say about defense systems appears to be quite relevant to atopics. I've found that people informed by other studies often provide startling insight into problems where you are stuck in a rut. I wish there was more interdisciplinary research going on. For example, I know that people are hoping that research on AIDS will help us, but I've often wondered whether an infusion of atopic's hypersensitive cells would help AIDS patients? Are eczema patients less likely to get AIDS or other immune system diseases because of our hypersensitivity? Probably not. Our systems react to superficial stimuli, not life-threatening ones. Oh well, it's just a thought. I just like the idea of trying to THINK in different ways to perhaps get some new answers. P.S. I just read other messages about the effect of colds and flu on eczema. I rarely get sick. I don't remember my skin specifically getting better when I have been sick. But I'm sure that it's never been worse when I'm sick. 

Date: Fri, 29 Dec 1995 15:25:10 -0500 From: Shelley Subject: Re: med info for laypeople 

Gil, I agree that there's a need for specific medical info geared for laypeople. This brochure that I am doing for eczema patients is focused on treatments and life management, but I think it would be a good idea to do a separate brochure focused on the specifics about the medical causes and effects of the treatments. My experience has been that the doctors just give one-line vague warnings about things and leave you in the dark about specifics. For example, I was told that I shouldn't take prednisone for very long because "it will cause trouble when you're old". But that was it. When I pressed him for more info, I was thrown another crumb, "It will be bad for your bones." It's such an awful experience to feel like they're not telling you the whole story and when you complain they say, "There's no point in worrying about all the complications". But then I have to live with this feeling of dread based on the unknown! This technique of downplaying the bad news may work well for people with temporary illnesses who get over it and can forget about it. But those of us with chronic lifelong conditions need all the info we can get! It's so distressing to have to fight the doctors to get more than a crumb of information! Anyway, I am now committed to taking action on my own to improve life for chronically ill patients. I have learned that if we don't do it ourselves, it won't be done. Unfortunately, the patients' mental and emotional state is not a priority for the doctors. I am making it MY priority in 1996. Any other resolutions out there? 

Date: Fri, 29 Dec 1995 18:05:06 EST From: Gilbert Subject: Re: med info for laypeople 

Right, Shelley. 

I think the best sort of a drug vademecum for lay people is one that pays special heed to chronic illness where the accumulative effects of drugs are most pronounced. 

Date: Fri, 29 Dec 1995 18:05:01 EST From: Gilbert Subject: Re: genes & engineers 

The sort of hyper-reactivity associated with immediate-type hypersensitivity (eczema and other atopic symptoms) has no benefits to confer on people afflicted with other immune disorders. In fact, AIDS patients often overproduce immune fractions derived from the B-Cell line of white blood cells, with the result that skin conditions of the Type I (i.e., hypersensitivity) order become a problem. This should not be confused with the anergy (i.e., inability to mount a delayed-type immune response) which is indicative of "cellular immune dysfunction" (ex. the T-Cell subcategory). 

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