August 1997 Eczema Mailing List Archive

I've found something that HELPS against this horrible multitude of fluid-filled bubbles underneath the skin, that itch like crazy and send you off in degrading rubbing and scratching frenzies:

Two weeks ago a new dermatologist prescribed an aluminium-in-acid (?) solution, officially described as SOLUTIO ALUMINII ACETOTARTARICI. You add 9 parts of tap water to 1 part of this and soak hands/feet/whatever in the resulting liquid at least 2 times per day. Relief is almost immediate. The bubbles dry out and disappear; after a few days you're back to functioning normally, even if it may take up to two or three weeks for your skin to look normal again (if it was bad to start with, as mine was).

It's rather expensive. Where I live, it costs the equivalent of about USD50 for 1 litre, out of which you get 10 litres which last me 15 days as I have to soak hands and feet. The pharmacist's leaflet that I got today says to wet a bandage and keep that wet for at least 15 minutes per application, I guess that would stretch the solution a lot further especially if your eczema is elsewhere. Even so, you'd want to get a prescription and get your insurance to pay for it, if possible.

The pharmacist's leaflet says: "Has an astringent effect on the skin. Also anti-pruritic [itch-killing-BvL], cooling and drying. Used for wet skin disorders. No interaction, as far as known, with other medication. Has been used for years by pregnant women without any adverse effects to the child."

This sounds very interesting. Are your bubbles of the type that you feel you have to break open in order to get relief? And when you do break them open, you sometimes need to squeeze out the liquid further? This may sound pretty awful, but this is how I have to deal with them. Also, running very hot water over these areas (hands and feet is where they mostly occur) also offers temporary relief (minutes) for me.

Yes, they are--that's partly why to me they're so horrible, this compulsion to do something with them. My hands and feet are the ONLY place they occur; I read somewhere they never occur elsewhere, but I forgot where I read this.

Robert, you sound as if you have exactly the same problem--you may wish to try this!

I have no "advice" but have also tried the Dermaguard sample (haven't read much about it on this list). It did make my skin feel a little stiff. I did not try it on the very worst, oozing parts, just a small amount on bra line and panty line, to see if it would protect me from possible elastic irritants.

I couldn't really tell one way or the other. It did not actually irritate my skin, but there were no dramatic improvements, either. I am interested in using it around my eyes, because I find that the extreme allergic watering and mucus I am experiencing are irritating my lower eyelids. At present, I use vaseline there, and that seems to work, but I don't like to use vaseline in theory, because of petroleum products and lack of skin breathing. In principle, Dermaguard should be better. However, I am scared that it will somehow get inside my eyes and would not wash out, since it is supposedly impermeable to water.

The bottom line is, I have not given it a fair try, but no, it does not feel like a great moisturizer. I would guess that, if it is such a great barrier, it would not let anything like Eucerin through. 

Shawn, My pattern is similar to yours: eczema in young childhood, then nothing remarkable until college. Actually, I do remember one tiny spot on my scalp that appeared when I went to Brownie camp at age 10, and had me worried that something was horribly wrong with me; but then I didn't notice anything again until I was about 20 and spending my junior year in Paris. Although I obviously ate differently (and better!) in Paris than in the dorms, I don't recall bingeing on anything in particular. In fact, as my diet got better and better (I became a vegetarian at that time), my eczema seemed to get worse and worse.

In my case, I surmise that I did not suddenly *develop* eczema in young adulthood, but that I had probably always had the tendency to it, and it was just (mercifully) suppressed during adolescence -- possibly due to hormones going wild & other growth-related stuff (pimples left no room for e). My heart goes out to those on this list who went through childhood and teens with eczema. Goodness knows, I was teased enough for being shy, wearing glasses, and not being cheerleader pretty, so I can only imagine how awful it would have been to have had eczema, too.

A derm once told me he had never seen any "old ladies" with atopic dermatitis, and that as soon as I hit menopause, it would clear up. In my experience, as my body has aged and lost some of the natural resilience of youth, my eczema has only gotten worse. Menopause did not help one bit. All this to say that I think we are just punishing ourselves to think that we *did* something (like pigging out on tomatoes) to make ourselves get eczema, and that we quite probably would have gotten it no matter what. Just my opinion.

That iris test sounds like the field of study called "Iridology." A friend of mine was interested in that in college. He looked into my eyes and told me every major ailment or injury I'd ever had. I was astounded. He was even a complete novice, as I was with him when he bought his first book on the subject.

Then I noticed (15 yrs. later) that our 1 yr. old daughter had brown specs on her otherwise blue eyes. I went online and hunted down an Iridology chart to see what area it pertained to (located around the vicinity of 4 o'clock on her right eye). Sure enough, it was the liver and intestines. Sounds totally whacked out, I know. But in my two scenarios it was accurate. I don't know of anyone else who's ever heard of it. Here are a couple sites I found: 

http://debra.dgbt.doc.ca/~daniel/irislib.html 
http://www.dynamoh.com.au/iridol.html 

There have been a few comments about using Dermaguard. I really don't think anyone should be using this as an Eczema treatment. The origininal posting about it from the company is, in my opinion, insufficiently clear. It seems clear to me that this product is a barrier preparation, supplied by companies as a supplemental safety measure to employees whose skin may come into contact with harmful substances. Such products are not applied as a moisturiser, nor at any time other than immediately prior to handling the hazardous substances. Dermaguard may be the best of its type, I don't know, and yes, it may have good properties, allowing the skin to 'breath' etc, but I don't think it should be seen as an eczema treatment. In the college where I work, we have had such products available for photography students whose skin may be sensitive to photo chemicals. But protective gloves and avoiding splashing are better. Granted, it may be fair to say that if you are prone to contact dermatitis, and have to handle things that trigger it, then Dermaguard may help keep the irritant substances off the skin, but it isn't a treatment for eczema.

Shawn: Yes, in a way - before my eczema got its worst, I was having hot milk drinks every night and cheese and yogurt every day. Although I was not 'allergic' to these as a child.

I havent had a severe infection outbreak with Chinese Herbs, but I have with Nizoral. I don't know if this is related, but I thought it was strange that an anti-fungal started me on a round of infections instead of clearing me up like it does for others. I had the infection reappear about five time over 10 months. Then, when I started getting another one, with itching red dots on my left arm that I could tell were going to start another round of infection, I put lots of baking soda on it while soaking in the tub. I also stayed mentally calm, unlike the other times that I freaked out over getting another infection. Somehow I've been able to avoid reoccuring infection since this, even though I've had the sores on my arm reappear about three times. 

My regimen now includes baking soda baths pretty much daily, followed by grapeseed oil. I've also cut out most dairy and all chocolate (boo hoo :( ). I still have some itching, some tiny bit of flaking on my face, but otherwise my skin is smoother than ever (at least since my really bad eczema started with my first pregnancy 5 years ago).

I hope you can find a way to break that awful cycle. I am inclined to believe that antibiotics contribute to eczema in some way.

I have full body eczema, although it is in remission at present. I also have an 8 month old who just started having eczema bad enough to frustrate me and try my patience. I first noticed he was itching like crazy. I cut out the milk I put on my cereal--I'd already stopped drinking it when my eczema first went out of control with the first pregnancy. This helped stop his bad itching, but now I'm dealing with red and flaky skin behind knees, on chest, in elbow creases, on instep, and spreading.

I have noticed that chocolate is a definite no-no. I haven't completely given up on cheese and yogurt, but am starting to try to avoid them too. My diet definitely affects my breastfeeding baby.

Again, as others have said, stick with the group. And to echo others *dump the derms*. I just never liked what they told me--from less baths to prednisone, I found their advice useless. Wait, I take it back, a couple have given me okay moisturizer advice. Still, I could have saved a lot and found out about Aveeno or Cetaphil cream (which I also like a lot) from this group.

I breast fed my first son until 15 months. He used to have a milk allergy and a walnut allergy. Now he's completely allergy free.

I have been tested allergic to tons of grasses and trees, pollen, dust, tomatoes, wheat, milk, chocolate, and just about every animal hair and dander. So, maybe this is a yes answer, breastfeeding is still best even if the mom is allergic. BTW, I was experiencing the worst eczema in my life during the breastfeeding. But even after I gave it up I still had it.

I have wondered too, why this disease seems to be more prevalent in our century. I have thought maybe it was the preservatives in our food, the pollution in our air or something similar. Perhaps it is the vaccines. Medical progress takes two steps forwards, then three back--for some of us.

I wanted to say that yoga breathing has been very helpful in controlling my itch. It's quite simple, just deep breathing at the back of the throat drawing the air through the nose. Concentrating on the breath somehow draws the attention away from itching. I think hypnosis might be good, but if it costs money I'd try self induced mental controls first. Or perhaps have a friend or spouse help with relaxation techniques. Massage helps me too. Luckily my husband is a willing masseuse (although after five years I think he's a bit sick of it).

Our Nivea (in Europe) seems to be a poor man's Eucerin (it contains the same "special ingredient" Eucerit); I like it. Atrix is another cheap, widely-available hand cream.

However, all I use as an emollient these days is emulsifying ointment, usually imported from the UK because it's so much cheaper there...

Re Massages: I can take an enormous amount of pressure on my back and shoulders - my massage therapist calls me (lovingly) the "client from hell" because he breaks into a sweat (better him than me) when he works on me. I was wondering if this may because of the desentization in those areas that comes from years of itching, hot water, etc. that lead to skin thickening. Anyone else have this experience? I do swim a lot, so I know that's why I need extra back, neck and shoulder relief, but... 

Re bubbles: I too, only have them on my hands and fingers. Sometimes I feel them coming - it itches a little. Then I have to resist (I usually don't) popping them. I get some satisfaction out of it. Then, I take a cuticle pusher and really open them up and always find the source - a little red area where the blister started. I know if I didn't break open my skin I'd be a lot better off, but sometimes, I just have to; or want to.

Hi, I, too, get those itchy little blisters. Sometimes I can get relief not only from the itching but have them dry up by putting calamine lotion on them. It's worth a try. 

My daughter is extremely allergic to milk, but tested not allergic to chocolate. So, the other day, when she wanted a pack of M&Ms at the grocery store, without thinking, I bought them. We took them home, and she ate them all.

Next morning, she woke up all broken out, not bad, but it was obviously noticeable. I retrieved the candy bag from the trash, and milk was listed as an ingredient, so that was most probably the culprit.

Now, my question: How can someone be allergic to milk and not allergic to chocolate? Does some chocolate not have milk in it?

Yes, I will try the SOLUTIO ALUMINII ACETOTARTARICI. I usually get the bubbles on my hands and feet only but sometimes elsewhere. For instance, a couple of weeks ago I also had a spot develop on one ear which when I went to scratch it a liquid came out. It is very similar to the hand and feet bubbles. Also, I remember as a child, on the top of my head liquid coming out of my scalp... it was a horrible experience that happened one summer when my family took me to the beach. 

My skin-bubbles occur only the palms of my hands. They start off really small (sometimes I can feel them coming) and grow to 1mm in diameter within a matter of hours. They than burst, and a clear liquid oozes out. This fluid causes more bubbles to grow, which then burst, and spread.

The bubbles are the things I hate the worst, because they leave open sores all over my palms. These can be painful, irratable and embarrasing. Luckily, I haven't had a bad outbreak since I lost my job about 2 months ago. I've almost completely recovered since then. Until a few days ago, anyways, when I first noticed that the bubbles had returned.

I usually can keep these bubbles at bay by taking a high dosage (25,000 IU) of Vitamin A (Fish Liver Oil) each morning, and 2 capsules of Flax Seed Oil. Beta carotine worked a little bit, but not nearly as good as Vitamin A.

One thing that really seems to help is spreading Vitamin E (400 IU) on my skin. This seems to make the bubbles go away, prevents them from spreading, *and* speeds up the healing process on my skin.

A warning to all: Taking high dosages of Vitamin A (levels above 10,000 IU) can screw up your health, mostly with your reproductive system. As far as I know, Vitamin A is worse for woman than for men.

I use really cold water for relief. Hot water feels *really* good, but only irritates and helps spread the bubble. Heat in general does this, so I gotta be careful washing dishes, even with gloves.

To Linda: When I read Skin Deep by Grossbart and Sherman, I was struck by his comment that eczema is a two-person disease and that it is primarily psychological. Since grade school I had searched for the answer to "why" I itched, but I found no answers in the psychology books then. Over the ensuing 40 years many pieces of the puzzle have come together through continued reading of feminist books, visits to numerous dermatologists and psychotherapists, talks with relatives, and delving into my own family history.

Grossbart's book was the first place I had ever seen those two comments, but they struck a deep chord. For me, when I finally unearthed the dysfunctions of my relationship with my mother and the family patterns and abstruse history that she never resolved, the horribly driven nature of my itching began to relent. After the deeply injured tissues began to heal, I now rarely experience itching to the degree or severity I experienced it growing up in a chaotic and highly stressed family environment.

I too have had years long problems with my eyes because of constant itching, rubbing, watering and mucus formation. I wash the lids thoroughly with an eye scrub, available at any pharmacy, twice a day, and take Loratidine or Ceterizine regularly on a daily basis. I also use Asimilan eye drops made in Switzerland, available at GNC, for lubriation. So far this regimen seems to keep things under control. 

Rubbing my eyes for 20 years frequently produces floaters that are very disconcerting. 

"Eczema is a Two person disease." NO WAY.

For decades the worlds leading experts said ulcers were from stress and it turned out to be a virus. This "psychological cause" of eczema is merely guessing. We know for sure when we eat something we get a reaction and it is not caused by another person. It is caused by a food. 

We can repeat this over and over again and it happens every time to our utter dismay.

I have been through extremely high stress times and my eczema was fine. I have been at peace and had lotsa problems. I see no correlation.

If the eczema is stress caused, then why do people clear when they avoid allergens? If eczema is stressed caused then why do we break out when they eat eggs or wheat or fish?

I can see a person scratching more if the person is angry at another person, but that behaviour can be unlearned. If one considers eczema as scratching then maybe eczema can be a two people thing, but if the only cause for scratching is a person, then eczema is not present. Eczema is present if there is an allergy present.

>> How can someone be allergic to milk and not allergic to chocolate? <<

Karen, this was a question I posed a short while ago. I assumed that if someone ate chocolate that didn't contain any milk fat and proteins (M&Ms are milk chocolate based so they'll have a certain amount of milk in them) then it should be ok as the milk is the problem ingredient - like drinking tea without milk or something. Is there anyone on the list that can bring more enlightenment to this dilemma??

On a happy note, since I've been taking 10mg of Zirtek, my eczema has virtually disappeared. I've still got dry patches but they're not itchy and I seem to be a lot more tolerant to allergens. It's early days yet and could have been caused by something else - but I'm really pleased with it so far. Thanks to Heather for her advice - and luckily I've experienced no side affects such as drowsiness as yet.

A lot of problems are caused by the amount of material used in furnishings which trap dust and dead insects etc - which no amount of cleaning can ever completely eradicate. Bedding is also another problem as it traps dust mites and their eggs. I'm really careful to ensure that I never use pillows and sleep on old mattresses unless I REALLY have to - and then I think I react just because I'm so worried about it!! Under the pillow case, I have a protective cover to stop any dust mites getting through and irritating my face. You can also get them for duvets and mattresses.

I keep the window open a little also at night to allow the air to circulate and not become dry from the central heating to help me breathe easier and to stop my skin drying out too much.

So yes, a lot of the environment we take for granted today and see as home comforts - not just that which we see as polluted air - can in fact cause lots of allergies too.

I get fluid-filled bubbles infrequently on my hands; they are extremely small (like the head of a pin), although they were much larger the first time I got eczema (on my right middle finger, when I was 17). Has anyone noticed that if you peel the dying skin back after popping small bubbles, that the skin underneath has little "pits" in it where the bubbles were? The eczema on other areas of my body is not like this at all (more like a dry sunburn). Makes me wonder if it's a contact allergy, or something similar to warts. The skin smooths out after a couple of days of topical steroids, though. Just my observations.

To those of you who think you may not be allergic to chocolate: My son tested negative to chocolate on the RAST at which point I said to the derm, "How can that be, there's milk in chocolate?" He didn't know but I later discovered "dairy free" chocolate which I occasionally eat. I've found this stuff at the natural food store called "Rapunzel" and "organic, bittersweet dairy free swiss chocolate." It's made with a trademark, "Rapadura" listed as "unrefined, evaporated sugar cane juice, organic chocolate (crushed cocoa beans), unrefined cocoa butter, vanilla beans. It is made in Switzerland by Maestrani, St. Gallen. for Rapunzel. Imported by Mercantile Food Company, PO Box SS, Philmont, NY 12565. 

Another 98% dairy free chocolate is made by Tropical Source, from Cloud Nine, Inc. Hoboken NJ 07030 (haven't tried this cos of the 2% dairy!). Note: I'm a breastfeeding, restricted diet mom. The Rapunzel product is a binge food favorite of mine so I keep it in the freezer so that I don't go at it all at once--it's good. Finally, another dairy free chocolate treat readily available in healthfood stores in the US are the Imagine puddings one of which (the best I think) is chocolate. Cheers! 

You can find dairy-free chocolate; in fact, it's delicious (the brand I've tried is called Tropical something and it comes in different flavors). It says prominently 100% Dairy Free. I don't think milk is a component of chocolate per se, but it seems to be added to many candies and chocolate bars. When your daughter was tested, they probably used only pure chocolate extract, not a candy bar.

I buy a pudding mix called Mori-Nu Mates (Chocolate or lemon) it is dairy free. You take a block of Tofu and mix this through in the blender. Its great, we don't miss real pudding at all. I have seen this product at at least two health food stores. Give it a try for your sweet tooth.

I believe dark (or semisweet) chocolate does not have milk in it. This was in info from my son's nutritionist, so be sure to double-check the label.

BTW, since I've cut way, way down on my chocolate intake, my eczema seems to be better. I'm not as itchy and flared up.

While I was away I visited a museum of witchcraft. I found a spell to cure eczema, although I wouldn't recommend it, in case it does work!

Its called a 'passing on spell'. Whereby you take scrapings of eczema skin, but them in a pretty little box, packaged beautifully. You leave this in a prominent place, eg by a bridge. Human nature being as it is, somebody else will surely take away the box and bingo - you have passed on your eczema. They will now have your problem.

I only mention this in fun, even if it did work it would be really mean to do this to anyone else. Although I have toyed with the idea of doing the same thing but throwing away the box, symbolically throwing away my eczema.

Anyone pick up a pretty box any time?

Zirtek: I'm taking this for hayfever and I have had a big improvement in face eczema, even while eating my bad foods. I don't even have to take it every day.

Food: I found that the restricted diet was giving me more psychological problems than the eczema was. I used to have an eating disorder and the only way I found to cure myself was to completely relax about food, eating what I wanted, stopping when I was full, but not forbidding anything. I found myself getting obsessive again and verging on binging on a severely restricted diet. Now I have said that I can eat what I like, in moderation. I feel much better within myself, maybe thats why its good at present, and my wedding is over, so it could have been stress making it bad. Perhaps I managed to lessen the allergies by avoiding the allergens for a while. Who knows why eczema does what it does??

I am being open minded on this though, if it gets really bad I shall have to cut out the foods again.

Bubbles: I get these, mostly only on the tops of my fingers. I cannot resist popping them and their babies, I do find emulsifying ointment soothing when its got to the very thick, dry, red stage.

Elaine: Yes, I too need hard pressure to feel much sensation through my skin. Affectionately and sexually, too, I need strong contact to feel it. If someone holds me in their arms, they have to squeeze tight or else I don't really respond. I've always been like this.

When I was a kid, my dad gave me massages when he put the creams and ointments on, and he did it so firmly, which was great. My mother did it more gently, and I didn't like it.

There's a paradox in that, I have hypersensitivity to myself through my skin, yet with others, I have a problem sensing and responding unless the contact is strong. I've always suspected that there's some kind of nervous system disorder involved in my case, some kind of imbalance connected to my problems with temperature sensitivity which aggravates my condition. 

Howard, everyone's eczema is not the same. Many of us have skin that does NOT clear even though we are avoiding allergens. Perhaps it would fit into your worldview if you thought of stress as a different kind of allergen. In a broad sense, life itself is one big allergen for some of us.

I too have had extremely stressful situations when my skin was fine. I don't believe that stress by itself is a factor for me, but it may be for others. I know that stress, combined with other factors like heat, does cause my condition to worsen. My condition is a complicated one that is not alleviated by the simple advice: Avoid allergens.

I know that you are only speaking from your personal experience, but remember, this group is a place to exchange support and a place where people are sharing painful truths that they have discovered. You can say something isn't true for you without condemning what someone has vulnerably shared is true for them. 

I disagree... I have had my eczema brought on by stress while at other times stress does not have any effect at all. I have had my eczema brought on by allergens and at other times they do not affect me (not to anywhere near the same degree). If my skin is in poor condition (stress induced) and I have a known allergen (those that I know can affect me), the combination of the 2 can be additive. I do not believe that any single person represents the universe of all others, therefore with eczema, there is no "single correct answer" or universal truth. These of course are my beliefs through my experiences and observations.

I watched 20/20 last week because they had a segment on alternative treatments, one of which was iridology. The iridologist is supposed to be able to determine the cause of your health problems by examining your irises. I forget how they go about treating them afterwards. I was disappointed in the segment because it was not very supportive of alternative treatments in general, the journalists basically said that they worked because people believed in them, rather than on their own, like a placebo.

I was taking Claritin during the height of allergy/hayfever season. It worked very well but it is expensive and must be taken every day, not just when symptoms occur . I am intrigued by some of your responses about Zyrtec. A few of you have reported that it not only helped your allergy symptoms, but you found it helpful to your eczema symptoms as well.

Do you have to take this every day or only when symptoms are present? The Claritin is $60 for 30 pills. How does that compare to the cost of Zyrtec? Do you experience any side effects with Zyrtec?

I was taking the Zyrtec every day when I took it. I have a friend with chronic urticaria (hives) who only takes it every 3rd day or so, with no problems, and finds that it does help him that infrequently. I guess it all depends on the severity of your condition. I found it did not elminate my eczema, but it did help me deal with it (kept it down to a dull roar, as it were). The only thing Claritin ever did for me was take the urgency out of the itch (I could actually wait 5 minutes before needing to scratch); it never helped as far as lessening the itch or anything. The Zyrtec was great when I wanted to get a decent night's sleep... (the point at which I took the allergy patch test and had to be off the Zyrtec for the better part of a week, I got very little sleep! Luckily we found one of my major allergens in the patch test... )

I can't speak for price -- I get a prescription drug program thru work that makes it no more expensive than $10 for a 30-day supply. I never noticed what the reality price was... 

The only side effect I ever noticed -- within the first 48 hours of starting on it, I wanted to bite the heads off of everyone I met. Ooh, was I ever bitchy! But it faded after 48 hours, and after having been on the stuff for a couple of cycles (I stopped taking it for a few weeks here and there to see what effect it was having), the bitchiness at cycle beginning was reduced as well.

I've been off the stuff for at least a month now, and things are under control (for the most part, anyways) with my staying away from the one major allergen (nickel). There are only two problem spots on my body at the moment, and I can deal with them without the Zyrtec for now. But I would have no qualms about going back on the stuff... 

We have in the past used a cream called "Egyptian Magic" on my son's eczema. I buy it at the local health food store. It has honey bee products and olive oil as claimed by the manufacturer (bee propolis, bee pollen, honey, royal jelly, olive oil).

The question I have is, how does one make sure that a cream does not have any steroids? Is there any lab in the U.S. which will do it for a fee or is there any federal lab which will do it as a free service to the public?

The cream works very well and heals the wounds very quickly. The manufacturer has assured me that there is no steroid in it but as I wanted to be absolutely sure, I used to make that cream at home by using the same igredients. The home made cream was more messy but as effective as the one I buy from the store.

In the past when I have had very bad itching I have found that using Domboro (Burroughs Solution) has really helped me, especially for those little water blisters. I put a wash cloth over the area and pour the Domboro over it again and again. I think it is available at most drug stores.

I have to report that I am doing very well with my eczema since moving. I have aquired a bit of a tan, which always seems to help. My derm once told me that it thickens your skin a little when you tan and I have thin skin.

I would be very cautious in using anything around my eyes. Eyes absorb medication at a fast rate. When my eyes are itchy I use an eye cup and an eye wash called Collyrium (a neutral borate solution) that way it rinses my lashes and the area around my eyes as well.

In my search to find out why this stuff that I got prescribed works, I spent a few hours (!) on the Web and found that the bubbles have a name: what we have seems to be called POMPHOLYX.

There is a neat overview of this disorder at http://www.dermnet.org.nz/dna.eczema/info.html

My miracle solution seems to be or at least contain lots of aluminium acetate. I found references to this in connection with the Domeboro solution that some of you have mentioned. I also found references to a nickel allergy.

It's weird because I was all moody before - probably due to the eczema flare-up I was experiencing. However as the Zirtek worked so quickly I experienced no excess moodiness or drowsiness and I think my temperament's improved. In fact I even appear to be more sensible than I was before - probably because I was no longer feeling as irrational as I did when the eczema was really bad. I just hope the feeling continues and improves. So Zirtek definitely gets my thumbs up.

It's just great to know that something is actually working for more than one person!!

'Chocolate' per se, i.e. the bean of the cocoa plant, has absolutely NO milk in it. Most products made with chocolate, however, DO contain milk and/or other dairy products... even some dark/semisweet chocolate -- you have to read the label... 

Pure cocoa powder -- baking cocoa -- has no dairy in it... neither does Droste's Cocoa, sold as a cocoa drink but comprised solely of cocoa powder... I make a nondairy cocoa drink from it by following the directions it gives, but substituting my nondairy creamer for the cream/condensed milk it calls for... you can do the same with any other baking cocoa... 

As a rule of thumb, any candy or baked good containing chocolate in it most likely also contains some sort of dairy in it... 

A good, nondairy chocolate product is Tofutti's Chocolate Supreme icecream substitute... I've turned lots of non-allergic people onto it, tastes like frozen chocolate mousse... 

In my case, those little skin bubbles only on the hands occur when I eat SOME microwave popcorn. I have not isolated the ingredient. Perhaps it's the form of corn, or one of the other ingredients. Eventually I will have a more specific theory.

The title says it all: Ulcers are not caused by a virus but by a bacterium.

Howard, I think eczema can be caused by any number of things and not everyones may be from the same thing. I have consistently tested negative for foods, but have a severe dust mite allergy. When I clean or am in a dusty environment, I break out. I have never noticed breaking out from any foods - including dairy. So, why am I covered with eczema? Because I have a lot of stress in my life! For the past twenty years, one thing has fallen after another in my life from unemployment to illness and deaths in the family, miscarriages, a sometimes rebellious son, a perfectionist husband. I have been in therapy for years trying to deal with stress! The eczema, itself is a cause of stress. I was fairly clear (prednisone) until the day my Mother died and went through four days of 95% coverage. STRESS!!!! 

I have noticed a lot of people talking about bubbling hands and feet lately. Add me to the list!! Only sometimes my bubbles are not tiny at all. Especially on my feet! there they become large blisters that just HAVE to be broken because they itch so bad. When the bubbled up skin dries, it falls off and leaves a raw spot that is very painful since I must be on my feet most of my workday. The bubbles on the hands are worst because I get them mostly on the tips of my fingers and when they dry, I have no feeling in my finger tips. This is bad because I count money and make change at work and often can't even feel the coins or bills. Sometimes when the bubbles first appear, they are so swollen I can't even close my hands. 

Regarding SkinCap: I was absolutely amazed to hear a commercial for SkinCap on my local radio station. I guess it is now being carried in the US. I called my local pharmacy and they said, yes, indeed they did have it. I asked the price and it was approx. the same as what the web page is asking for it. After discussing my use of prednisone and steroids with my internist (the one who is monitoring my diabetes) he said that he felt TOPICAL steroids would not affect my diabetes (just the systemic ones). I am going to give the SkinCap a try simply because I am in such duress with this round of eczema. Ever since I stopped the presnisone and celestone shots to control the diabetes, the eczema has been having a field day on my body. For the first time ever, I have a patch of it on the bridge of my nose! It has NEVER been on my face before!

The name of the drug in Zirtec is cetrizine dihydrochloride of which it contains 10mg if that's of any use when talking to your doctor or derm. It's only available on prescription in the UK I think.

A family friend with eczema lent me a copy of Skin Deep a few years ago. My mother started reading it... boy, she was fit to be tied! She became defensive about her parenting and said that the author was just "blaming the mother" as so many pop psychologists are wont to do... We didn't discuss it anymore, and I'll admit that the self-help program outlined in the book seemed like too much hocus-pocus to me, so I gave the book back. I've gone through years of therapy and think that my eczema would have gotten better than it had if the causes were purely emotional. In my experience, hormones/menstruation, foods, and changes in the weather have had the greatest effect on my eczema. I do tend to scratch when I'm nervous or angry, but I can pay attention to that now. However, that alone doesn't prevent my skin from breaking out.

Hi, Sanjay, This is intriguing. If the homemade cream was just as effective as the store-bought, then that is a good sign! Can you tell us more specifically how you make it (where you get the ingredients and how much of each), how you use it, and what kind of eczema it helps? 

This seems to be a Big Question, with enough partisans on both sides to warrant serious thought. I was almost totally convinced that stress was unrelated to my own eczema, since I often had clear skin when stressed and lousy skin when everything seemed hunky-dory. But, trying to make the stress theory "fit" this lack of observed correlation, I surmised that maybe, when we recognize that we are under stress, that is a way of consciously acknowledging it so that it doesn't have to come out in our skin, and that perhaps when we think we are not under stress, there may be something hidden to our conscious mind that is manifesting in our skin. But there is no way to test this, so it amounts to accepting the theory because it is plausible, despite lack of empirical evidence.

However, recently I have had two instances where I think stress -- or lack of it -may have had a role in my eczema. The first is that, when I discovered this list back in February, almost that very day, my extremely bad eczema began to clear up. I did not do anything new in terms of behavior (except to STOP taking prednisone), yet went into remission for about four months. Was that merely a coincidence? It seems plausible to me that it was because finding this list destressed me about my condition and provided enormous hope and support.

The second instance was my dissertation defense in July. I knew this was going to be a major stressful event and almost "gave permission" to my eczema to come back as a symbolic release of tension (this is hard to explain, but it's as if I were thinking, "When this is all over, I will be so relieved, I don't even care if the eczema comes back" and so, sure enough, it did). It's as if I were someone else during those last months when I was working so hard to finish it up (and during which my skin remained clear), while I am now back to my "normal" self (the eczematous person). While I hate this eczema with a passion, its familiarity is oddly comforting in a way.

Anyhow, all this to say that while I think the stress=eczema equation is way too simplistic to explain the condition most of us have, it is probably one contributing factor out of many, and may be stronger or weaker at different times or for different people. I like Shelley's metaphor that stress may be considered as an allergen. Maybe it might be the "primer" that makes our bodies more vulnerable to other allergens.

Just to counter what seems to be a "trend": when I am caressed, the lighter the better! I always thought this was because our skin is hypersensitive, so that a light touch goes a long way. In fact, the only possibly "good" thing about eczema is that tickling feels so divine.

A rare confession from a dermatologist, quoted as a part of Dermatology Grand Rounds as reported in the Journal of the American Medical Association: "I have seen Mr. J only once in the past year. He continues to use self-management... I hope I am not too casual about following him, but he continues to know more about the illness than do I !" (JAMA, 278(4): 328 ).

I notice that immediately upon becoming stressed, eg - trying to do something fiddly whilst being in a hurry - I start to sweat. When the sweat breaks out on my top lip I start to itch. If I don't notice that this has happened I will absentmindedly rub really hard and break open the skin and the redness comes back and the cycle begins.

If however, I notice, I can wash with calming emulsifying ointment, take a few deep breaths, panic averted. 

It is extremely possible that in times of major stress this sort of thing is happening the whole time. Whereas when you are on a special diet, being careful, you will be aware of minor and major stress levels and act accordingly.

I really do believe we have a tendency to eczema, probably with hayfever etc, and all sorts of things can trigger it off, its not simple.

I thought I posted this a long time ago, but... decided to write it all over again in hopes it can help someone. This is how I view it and it has definitely helped me.

What causes eczema is complicated and varies individually from person to person and also for a distinct individual depending on that person's current state.

What we all have in common is that we all inherited the tendency. Here's an equation that tells whether one will be effected by eczema at a particular time:

Index = Inheritance + Allergens + Stress

Index is a number in percentages so it's value can be 0 to 100.

I'm going to assign the value of 50% to 'Inheritance', which I will call the inherited factor of eczema. You have either inherited the tendency or haven't... so anyone will either have a value of 0% or 50% for that variable.

Now, let 'Allergen' be the variable for how much a person is being exposed to Allergens. I could have broken down this in terms of external allergens (e.g. dust mites, pollens) or internal allergens (e.g. chocolate, wheat, tomatos), but decided against that complication for now. Let's say that the Allergen variable can have a value from 0 (no exposure to allergens) to 35 (a lot of exposure to allergens).

Finally, we have the variable 'Stress', which I'll define as the amount of stress currently in one's life. I'll estimate that the value of the Stress variable can be 0 (no stress) to 15 (plenty of stress).

Now an example. Let's take a fictious character and call her Janie. She's inherited eczema, has been mostly careful about her diet, but hasn't done anything to alleviate her dust mite allergy, and has a stressful job.

Index(Janie) = Inheritance + Allergens + Stress = 50 + 28 + 12 = 90

Now finally for what this all means. Let's say that when all contributing factors are > than 88 for Janie, she notices eczema; else her skin is clear of eczema.

Since 90 is greater than 88, Janie notices eczema.

WHAT DOES THIS MEAN??? Janie's eczema will heal if she can lower the value 2 points. Well, Janie can't lessen the value for 'Inheritance' so she can only work with the other two. If she takes a vacation to lower her job stress or does something about her dust allergy, she should see her skin clear.

Note that different individuals with have different indices and that the same individual can have different indices at different times in his/her life. I suspect for many of us that the Index is much lower than 90... perhaps as low as 55. If this is true, one would be unwise (if not downright ignorant) to not consider the contributing factor of stress.

Credit where credit is due: this has been somewhat of a paraphase of what the author of SKIN DEEP wrote about.

This is my theory as well, that my stress shows up in my skin. It is not the only way it shows up in my life, but when I was younger, especially, I noticed that my skin would flare up and then I would realize something was bothering me--not usually the other way around.

Despite all our different experiences with this disease, it is amazing how many similarities there are as well. Thanks for sharing your thoughts on this. Knowing that I internalized my stress unconsciously helped me to change the way I delt with stress. Incidentally, I also have fertility problems (or did in the past) and fell this was due to internalizing my stress instead of dealing with problems head on.

To Faith: I noted your mention of an allergy test turning up nickel. I think my three-year-old has nickel among her growing list of allergens. I figured this out after repeated eczema outbreaks on her legs after wearing several outfits with one thing in common... leg snaps. Are there other common items you have learned to avoid now that you know you are allergic to nickel?

To those with fluid-filled bubbles: Thanks for sharing your experiences with fluid-filled bubbles and your various remedies. My daughter always has some of those on her hands and I thought they were something awful in addition to the eczema, such as herpes or something. Your descriptions match exactly her symptoms.

To all with allergy testing experience: List subscribers have mentioned various allergy tests during the months since I have joined this group: RAST, patch test, blood test, prick test... I don't know what most of those are. I am visiting my daughter's ped. in a couple weeks with all my questions and requests. I will be asking for referral to allergy specialist. My daughter's eczema is moderate to only occasionally severe, so I am not willing to subject her to anything very painful or invasive since she is only 3. Based on your testing experiences, what should I be asking for? What do those procedures entail? Has anyone found a website that describes various allergy tests?

At age 49, I'm dealing with my first experience with what has been diagnosed today as atopic dermatitis, although I have my doubts about the atopic part. I spent 5 minutes literally with a dermatologist who barely took any medical history, asked me nothing about how the rash had developed and progressed, glanced at the outbreak which covers most of my body now, then had his nurse give me a shot of cortisone and prescriptions for antihistamines and a steriod cream of some sort. The nurse also gave me a handout that the doctor had written which stated that "leading allergists" agree that it is not an allergic reaction. When I managed to ask him, as he was on his way out of the examining room, what caused this condition, he said it is inherited and something about "worry". He did reassure me, however, that "We would make it better, hon." He did seem a bit nonplussed by the fact that I have no history of eczema, asthma, hay fever and such and that there is none in my family. Of course, if he had asked me, I would have told him that I am allergic to nickel and since childhood have gotten rashes from fragranced soaps. As the kids say, what a wonderful experience - NOT. On top of that, the cortisone shot doesn't seem to be doing a thing to help. I understand now why so many people on the list are not high on the profession.

I may try another dermatologist, although the wonderful world of managed care doesn't make that easy. I suspect that I am going to have to deal with it pretty much without the assistance of the "doctors". This list has been an enormous help already, although I think you'll understand that reading about the life-long efforts of people to deal with this condition is rather depressing at the moment. I'm still rather hoping that it will just go away in the same mysterious way that it appeared... 

Hi Janice, The biggies for me were: 

• Pocket change. Don't let your daughter carry pocket change in her pockets, at least not directly. A leather pocket purse, or a coin purse of some sort, is OK; I went back to carrying a regular ol' purse after 3 years of just tucking my wallet in my back pocket and my change loose in my front pocket. I was getting a rather nasty rash right around my hips from that one. 
• Underwire bras. Your daughter has a few years to go before she has to worry about this one, though... :) This one caused severe itch under my breasts. 
• Metal zippers. I've switched from wearing jeans (metal zipper, metal rivets & buttons) to chinos (plastic zipper, plastic button, no rivets). Beware also of metal zipper pulls that touch the skin directly. On one particularly cold day in May, I zipped my sweater all the way up to my chin, where the metal zipper pull rested against my skin all day. My chin itched for days... 

I underwent a patch test. They took 50 little dots of (I assume) gauze and saturated them with various possible allergens, then taped them to my back in various locations, mapping what dots went where as they did it. They then taped over the whole shebang with enough surgical tape to hold together the entire Russian Army... :) 48 hour or so later, I went back to the dermatologist. They peeled off all the tape and "read" the dots (I.e. looked for the ones that looked most irritated (red, blistering, potentially even oozing)). That was it. No pain, just a bit of discomfort from having my back immobilized with all that tape, a whole lot of itching from my right shoulder (where the nickel-saturated dot was), and a bit of itch from around the edges of the tape. Turns out the latter was because I had reacted to the tape almost as strongly as I had to the nickel... :) But that's supposedly somewhat unusual -- the nurse-practitioner who did my taping (who, admittedly, appeared to be fairly young) said she'd only ever seen one other person react to the tape like that... 

They tell you that, if the tape comes loose, get somebody to help you re-tape it. Don't do like one of their patients had done to her -- when her tape came loose, her husband helped to retape her. With duct tape! The NP told me you could hear the screaming from everywhere in the office as they peeled the stuff off her bare skin... (ouch!)

Dear Janice... My daughter is also three. She has many food allergies: peanuts, corn, dairy, eggs, many fish, and wheat. On top of the allergies she has many sensitivities which I have found trigger her eczema as badly as the "allergies". Among the MANY foods she's sensitive to: yeast, quinoa, amarath, soy, potato, sugar, salt, and quite a few fruits and veggies. 

All allery tests have their strengths and weaknesses. I don't know much about RAST, but I have had a bit of experience with pin prick tests. They are invasive. Doesn't hurt much, but it is uncomfortable, as you can imagine. Evidently these tests aren't as revealing as allergists would like you to believe. The test determines if your body is producing IgE, just one of many anti-bodies your immune system makes when exposed to things that piss it off. Also, only food allergies for which the person has an extremely high IgE lemel jwill be unconered by this test. Since 85 percent of food allergy is non- IgE mediated, this type of testing cannot give an accuate picture of a person"s food problems. 

A good example of this tests shortcomings is proved to me by my daughters' recent test. The allergist declared that according to his test she is no longer allergic to dairy. bull. That very morning she was in her little sisters' high-chair. I was careless in cleaning up the mess Chelsea had made with the milk I rarely give her. Valerie broke out in hives in moments. 

On a more positive note, the test did confirm suspicions I have about some foods. 

The other "tool" I believe in for allergy testing is EAV. Electroacupuncture by Vol. Testing is done on an instrument (such as Vega, Dermattron, or ViTel) that measures galvanic skin response. A vial containing a suspected allergen is placed in a receptacle in the instrument. The person being tested then holds a probe from the instrument in one hand while the tester uses a second probe to touch acupuncture points on the fingers of the person's other hand. An electrical circuit is thus completed between the person being tested and the measuring device. Any change from the calibration number on the meter indicates a problem reaction. Foods, chemicals, inhalants, neurotransmitters, metals, nutrients, and many other substances can be tested in this way. The accuracy of the results depend a lot on the skill of the tester. 

The thing that I find most confusing and distressing is that doctors of different kinds believe that only their way of doing things can work. My GP and allergist both feel that EAV doesn't work. Well, it works for my daughter and thats all that counts.

I found this at a New Zealand derm site (http://www.dermnet.org.nz). It may just be common sense, but it is the first time I have seen relative absorption actually quantified:

"Steroids are absorbed at different rates from different parts of the body. A steroid that works on the face may not work on the palm. Conversely, a steroid which works well on the palms may cause side effects on the face.For example:

Forearm absorbs 1% Armpit absorbs 4% Face absorbs 7% Eyelids and genitals absorb 30% Palm absorbs 0.1% Sole absorbs 0.05% "

A while back, someone on this list mentioned having had their blood analyzed using Darkfield microscopy. Whoever it was (or any others of you), what has been your experience of it and has it given you any insights into eczema?

I had mine done yesterday. A Darkfield microscope allows you to see (magnified on a computer screen) your live blood: the size, shape, quantity and clumpiness of your red blood cells, the number and activity of your white blood cells, your triglycerides, and any parasites or bacteria that may be present. Then they can also do a "dry" cell analysis, in which they squish an individual cell and "read" it like they do your irises in iridology (I.e. where each part of the circle represents a different part or system of your body).

It was all very interesting and impressive. Unfortunately, it did not give me any major insights into my eczema. My blood was basically normal, although they did detect some slight liver congestion, which could logically be related to the eczema, I guess. I asked if an autoimmune condition would be detected by this analysis, and they said it could show up as an increased number or increased activity of white blood cells, but they did not see any evidence of this in my sample.

If the procedure were more readily available, and did not cost so much, it would be interesting to repeat it at various times when one's eczema was flaring and when it was in remission, to see if there were any obvious specific blood markers that distinguished these periods.

I have mixed feelings on the results from Daniel's blood testing. The Naturopath says he has an intolerance to potatoes--which means now one of his favorites is off the list of food he could actually eat. Plus anything that is associated or grown on potatos such as dextrose. Also means no regular table salt. Then we were told no fruit or sugar within 4 hours of each other to aid in digestion. Also told no ham, bacon or lunchmeat, or turkey. So with his allergies and intolerances we are down to pork only. We are starting by just cutting out real potato. She also said we shouldn't eat any foods that aren't in season in our own climate.

Also said he should have hydrotherapy. The towel wraps to aid in digestion. I know that at his age he is not going to lay still for that. He won't even lay still for any doctor on the little bed.

It basically comes down to eating mostly natural foods---which we all know is best for us... but it all comes down to a lot of money for the health food stores and Dr. visits which most of the time aren't covered.

Apologies if everyone is tired of this topic, but I wish to put in my eczema and stress story as an illustration. I agree with those who believe eczema is caused by a different combination of inheritance, allergens and stress for different people.

When I was working very hard on my dissertation, I was under the most stress I have ever had, worked constantly and could never relax for a minute. I also had constant eczema over a good deal of my body. The one exception occurred when I would take a two week vacation once or twice a year. I'd go different places to visit family and have a wide range of expereinces, but the same pattern always occurred. My eczema would be completely cleared up after three days off when I had managed to destress from my work. The clincher for me is that it always reappeared, NOT after I returned home and back to work, but on the last day or two of my vacation when I began to worry about all I had to do when I got back, which convinced me it was not something I was eating or the climate or being away from home but the actual stress I was feeling that did it. This is MY eczema truth, not everyone's, but I find it pretty convincing of the contribution of stress to this disease. I guess the epilogue to the story is that I now have eczema that is less widespread and comes and goes, which also seems to fit my perception of the stress in my life associated with having a job that I like and not being a grad student anymore!

I'm having a really bad flare up that started 5 days ago. Today I couldn't take it any longer and went to a derm clinic at a hospital. My skin is cracking, scaling, bleeding, and oozing in parts on my face, neck, and arms. the derm prescribed a short novo-prednisone course: 5 days with 50 mg, then 5 days at 25. I am a 55 kg female. Does anybody know whether this dosing is appropriate? I had been to another derm about 2 years ago, again with a major flare, who gave me a much lower dose for what I remember as a flare of the same order. His dosing was 4 days at 20mg, then 4 at 15, 4 at 10 and 4 at 5 mg. I would appreciate any comments on this matter.

I have not used steroids since my last flare up 2 years ago, when I had prednisone internally, and betamethasone topically for my flare up. I have just come back from a two week trip to France where I had to give up all the dietary restrictions I have been using: no milk, no eggs, etc. However these are all foods I have had before, I did not give them up until about two months before my trip when I joined this list, and although my skin was better after I made the cut, it was no way as bad as this when I was eating a normal urestricted diet. I take flax oil everyday, and continued to do so during my trip. My problem now is that I still don't know what has caused this flare-up, just as I don't know what happened two years ago. Any clues, anyone?

My final question is: how dangerous is prednisone? I have only ever been on short courses, 3 times in the past 3 years. Do I have reason to worry? It is stunningly effective for my skin, and makes me very hungry. I feel so ecstatic to be almost normal and my sex drive increases (although this might be because it no longer hurts to be touched or rubbed on my skin). I'm pretty sure this course will clear this flare, but should I be concerned about using it as a last resort everytime the going gets tough? Normally, I am very careful with my skin, stay out of the do not swim in chlorinated pools, eat very carefully, and moisturise all the time. Reasons for this flare elude me. 

For what's it worth, I believe that both Howard and Robert are right. Somewhere in the chromosome configuration, we got lucky and got the eczema gene. And some of us are suppressing our emotional needs for so long that its coming out in the form of eczema.

Donna: I too like chocolate Tofutti. I eat their ice-cream sandwiches called Cuties. Other non-dairy products like Rice Dream taste terrible to me in comparison. To me, Tofutti is the closest thing to real chocolate ice-cream. I buy it at Trader Joe's. 

Ken: I like the way your mind works. Your equation makes sense and can be adapted to each person's specific condition. Whatever someone believes is a factor in their case can be included in the equation. 

Lynn asked about preparing the cream at home. I am giving it below. The cream available in the market is much smoother and when applied is not very visible. The one made at home makes the clothes messy (wax and oil) and also stains bedsheets. Hence I would prefer to use the one I buy if I am sure that there are no steroids in it.

Buy 

• Bee wax ( round tablet 2" thick, 4" diameter) 
• Bee pollen (a bottle of capsules) 
• Bee propolis (a bottle of capsules) 
• Royal Jelly (a bottle of capsules) 
• Honey 
• Olive oil

Melt one piece of wax in the china bowl by heating it for 1 minute each few times. Take olive oil in a tea cup (3/4 cup) and mix it in the liquid wax. The purpose is to prepare a base of wax and olive oil which does not solidify like the wax but has the consistency of a typical ointment. For this, you would have to mix olive oil at least 3 times (3/4 cup) and stir the mixture to make sure that the wax does not solidify. Once you have the ointment base ready, use a cheap $20 food processor to stir it and make it homogeneous.

Then add 8 capsules each of propolis, pollen, royal jelly. Add two table spoons of honey. Operate the food processor again to mix it thoroughly and to give it an ointment like consistency. Add olive oil one tea spoon at a time as needed to create good consistency. Operate food processor every time you add olive oil.

I believe that those fluid-filled bubbles are called Pompholyx. I get them when I use certain brands of dishwashing liquid or handle the carwash detergent. But I have gotten them on my feet too. Does anyone have experiences with large, extremely painful swellings on their palms and/or soles which start out like little insect bites, then multiply and coalesce? Sometimes I can hardly walk when I have them. Take care and try not to scratch!! 

My experience with patch testing (TRUE test): this was a relatively small test (~30 substances?), and the eczema on my back was too bad for them to put the test on my back, as it is usually done. So they stuck it on my stomach and, after 2 days, only nickel and Balsam of Peru (food and perfume additive) came up positive. However, the "formaldehyde" square flared up 2 days after the test was read. I still don't know if this was a genuine reaction, or if my waistband was irritating the skin. It was such a distinct square mark, though, that I still wonder if I have a mild reaction to formaldehyde. I never bothered to tell the derm. (they obviously come from the "strong reaction = legitimate allergy" school of thought; no room for cumulative reactions over time).

Tina, you mentioned that potatoes are one of Daniels favorite foods. Am I correct in assuming that he had potatoes often? The reason I ask is because I have found that when I give the same food to Valerie too often, she becomes sensitive to it and flare up. Avoiding the suspected food for a couple of weeks often does the trick, but even then, I must rotate carefully. See what your naturopath has to say about that theory. The reason for this, I'm told, is that the body heals itself. I really want to believe this!!

She sounded like this was a forever thing. She said cut out anything containing potato, potato flour and potato starch. Also, B Vitamins are cultured on potato base and dextrose can be a potato sugar derivative. So I am suppose to cut out a lot more than just the real potatoes. French fries were the only food offered at fast food places that I let him eat, now we are down to zero. This can all be so frustrating... but we'll be fine, we shouldn't be wasting hard earned money on burgers and fries anyway!!!!!! I have an even longer list of potato items than the few I just mentioned...

It was my daughter Valerie who had the Darkfield Microscopy testing done. In Valerie's case, the test showed evidence of a parasitic infection. Many of the magnified blood cells were hollow with little squiggly tunnels left behind. Yuk. Apparently its their favorite food. The problem with these guys is the metobolic junk they leave behind. On the monitor it shows up as clumps of fungus.

Theory: The skin is our largest organ. If the kidney and liver are over-burdened in the disposal of waste and toxins then the skin is the next place for the body to clean itself out. This is my reason for feeling so strongly against the use of steroids and other suppressing medications. Obviously you don't have a problem with parasites... Isn't it amazing to see your blood up on a screen like that? Has anybody else had experiences with darkfield? You're right about it being pricey.

Karen: The lower dosage that you used 2 years ago is more consistent with my experience. Actually, I've used even less. The high amounts your current doctor has prescribed seem excessive for a flare that is only on upper body and only lasted 5 days. I usually only resort to prednisone when my entire body is out of control for at least a month.

Also, I have had success in using antibiotics rather than prednisone. Have you ever tried this? I've tried prednisone alone, and prednisone combined with antibiotics. My latest test involved antibiotics alone, and it worked just as well as the prednisone alone and the combination. Some people want to avoid use of antibiotics and some want to avoid use of prednisone. I'm just letting you know that both are options.

Perhaps "novo" prednisone is different from regular ol' prednisone, but if not, that seems like a high dose to me! Especially as it seems that you would be going from 25 mg. to 0 after the 10th day, which means not much tapering.

The most prednisone I've ever had for eczema was 40 mg. a day, at which level (I weigh about the same as you) I was bouncing off the walls from stimulation. Until I developed tolerance to prednisone from long-term use, and needed more to get the same effect, I would find that 20 mg./day for a few days, followed by tapering off, would generally clear me up completely.

There is a lot of information about nickel allergy at the New Zealand dermatology website that Brigit turned us on to:

http://www.dermnet.org.nz/dna.nickel.allergy/info.html

The list of things that possibly have nickel in them is about three pages long -- you would have to live in a cave to avoid them all ! -- but there is apparently a way to test whether specific items, such as jewelry or leg snaps, do contain nickel. Check it out.

Yes, the dosing seemed high to me too, and I questioned the derm about it right there. He says if I have to question everything he says, he doesn't have to treat me and left the room with the two med residents he brought to see my case. He was pretty arrogant and told me he's been doing this for 25 years and all his eczema patients do well. I just wanted to get the prescription and leave, so I went after him and got it. He says my skin was not "really infected" and that therefore I do not need an antibiotic. However, I had oozing parts that were literally dripping. That seemed infected to me. Before I left, he said to have a little faith.

I have since taken two days of 50 mg prednisone. I have three more 50 mg tablets, and then 5 half tablets. Do you guys think I should taper the course myself? I could probably cut the half tablets into quarters, which makes the smallest dose 12.5 mg. I know it isn't right to tamper with a presciption, but his dosing seems pretty high to me. What do you suggest I do?

It is because of this attitude that I don't go to see derms except when in dire need. I do not use steroids topically anymore and this seems to infuriate them. Any derm I've seen also tells me that diet has nothing to do with it, although for me it certainly does. It's as if they want me to come see them just to get steroids, and not take any part in treatment other than applying creams they prescribe. Unfortunately, about once a year since I've been here, I've had a really severe flare and needed some kind of very strong steroid to allow me to function. There is no forgiveness for a student who misses exams, and I know it's not good for me, but I need that steroid to function and get by. Most of the time I am able to get by with careful eating, vitamin supplements, and lots of moisturiser.

I have yet to meet a derm who has more to offer than topical steroids, antibiotics, prednisone, and a major attitude. 

Naren is going thru yet another bad flare-up - with him it seems to be bad, worse and worst with no let up at all. Both his dermatologist and allergist have pretty much given up - they are talking about a course of oral steroids - which I'm dead against so things are looking pretty bleak. Any suggestions to get him to sleep better? Currently he gets a dose of atarax at bedtime (1 tsp ) - doesn't seem to help at all . We're up most of the night patting him and massaging him so at least he gets a minimum amount of sleep but after 13 months of this we could really use some sleep. Do other moms and dads go thru this? How do you cope? 

Thanks for the suggestion of sewing cotton socks on to underwear pants . At least he doesn't get to his bare skin anymore. But now he focusses on his hands! Does anybody else have problems with flare-ups due to the air-conditioning? Ours is central heating and cooling with the system in the basement and I wonder if its mold coming thru the vents. Are there any tests for this?

HELP! Does anyone have suggestions for an effective antihisimine that is taken only when the need arises. I have had sneezing attacks that last 10 minutes at a time and I am taking care of my neighbors cat (at her house) but have left there completely stuffed up. This morning I took a Seldane and it did NOTHING. I can't take any other medications until it has left my system. If anyone has success with either prescription or over the counter nasal decongestant or antihistimine with NO drowsiness, your advice would be much appreciated.

I work as a therapist and I often use visual imagery in my work. One of the things I have taught my son to do when his eczema flares up is to imagine that an invisible hand is gently gliding a giant ice cube over his skin. It really helps him. He just sits still, closes his eyes and visualizes away!

I have decided to try and eliminate dariy foods from my diet and see how it works. The thing is, I had extensive allergy tests inDececember and it turned out that I was not allergic to dairy foods. Does that mean that it doesn't cause my eczema or that it doesn't cause my allergies?

Any thoughts would be greatly appreciated. Has anyone else seen improvement by elimnating dairy foods even though they were not allergic to them?

Karen, The dosing I was prescribed for Prednisone was much lower (sorry, I don't remember the exact amounts). I find that I need to be extremely careful about infections when on Prednisone b/c I've been told it can suppress the immune system. I try to avoid Prednisone at all costs b/c several weeks later I have to do an antibiotic cycle it seems. 

Regarding you arrogant derm, he's a jerk. I question EVERYTHING a derm prescribes (I've seen 3) and I could not care less if it offends them. You MAKE SURE they answer ALL your questions b/c they have to be held accountable for all they do. If anything, it helps you to understand the drugs, therapies, etc. so you can make your own informed decisions. 

I have been prescribed Prednisone numerous times and end up throwing the prescription in the trash when I get home. I usually end up only filling half of the prescriptions prescribe b/c I have learned through experience what my body really needs. Derms have been brought up in the exact same thinking throughout the country and hate having a blow to their ego when questioned. Screw them, it's your money and more importantly it's your body. With all the malpractice suits he better damn well adjust his attitude. Next time you see him you can tell him that he's an asshole and by his attitude an inferior derm (tell him I'm the one who said that if you want!).

My current dermatologist TRIES to answer all my questions and does not get offended if I flat out tell him I disagree. He's extremely nice, giving me tons of samples of Zyrtec, lotions, soaps, etc. I'm currently not insured and he has even chosen NOT to charge for some visits. I like him as a derm not b/c he is so knowledgable(he actually is clueless sometimes) but b/c he admits he dosen't know some of the answers instead of trying to snow me. To sum up this very long letter, make SURE the derm answers EVERYTHING you ask b/c that's his job and his responsibility. I will try to find my old prescriptions for Prednisone to find out the dosage.

I have found that the over the counter dose of Chlorophenerimine (sp?) is helpful on a short term (4 hour ) period. It is a little round yellow pill that metabolizes quicker than other antihistimines, but it seems to work well at breaking that allergic cycle, and you can get it over the counter.

I don't tend to use antihistimines much because my particular eczema seems to get more inflamed the next morning after I take them, as if I suppressed the histimine and then my body needed to catch up by letting it out after the medicine is gone.

Zirtek is licenced and manufactured by UCB S.A. Pharma Sector in Brussels, Belgium. In the UK it's marketed by UCB Pharma Ltd, Star House, 69 Clarendon Road, Watford, Herts, England WD1 1DJ. It really helps the sneezing and itching. However I think looking after a cat is probably not helping. I'm completely allergic to those things no matter how many drugs I take!!

In addition to anti-oxidants (the usual supplements I guess) and borage oil I also take (in the same tablet) dandelion root and milk thistle and I think this helps as my skin is a lot clearer and smoother because it's helping my liver to eradicate all those nasty toxins.

To my knowledge, there are no OTC antihistamines that don't cause drowsiness. So, what I do is cut my Benadryl tablets in half. Even the half dose seems to be fairly effective, and I don't seem to get drowsy.

To other moms: I feel like such a monster! Valerie skin is pretty bad again. I know she's only three, and I know its itchy but I can't stand watching her scratch herself to the point of bleeding. I'm frazzled to the point that if I see of hear someone scratching in public I want to yell at them and swat away their hands. I'm a good mom, and Valerie's a great kid, but I don't know how to cope mentally with her scratching. Any advice would be appreciated.

Mallika, There has been a lot of discussion on this list about differences between food allergy and food sensitivity. While you may not have a true allergy that would show up in a test, you may well be sensitive to dairy products. Some kinds of dairy are also rather hard to digest, so they may put extra burden on your liver, which could in turn affect your eczema. From people's reported experiences, it would seem that the best way to tell if dairy elimination improves your skin is to try it (and not depend on tests).

I tried eliminating dairy a few years ago. At first, I thought I would die missing it, as I was a big dairy eater. I was also dismayed at how many prepared products, even the "healthy" ones, did contain some powdered milk or butter. I was very assiduous for several months. My eczema did improve, though I was doing other dietary things at the time as well (such as avoiding wheat, coffee and sugar).

Subsequently, I went back to eating some dairy and did not notice any deterioration in my eczema. I eat it on a limited basis now. I would encourage you to give it a try for a few months: at worst, it will not help, and you can then go along eating dairy happily ever after; at best, it will result in an improvement, after which you can try to fine-tune how much you can eat and get away with.

What has been posted to this list about dermotologists confirms my own experience that, on the whole, they are even more arrogant and impermeable to questions than other kinds of physicians. I always figured it was because they were feeling frustrated about not being able to help atopic dermatitis, and felt they had to put up a front of knowledge and confidence so that the patient would not realize they were clueless. Perhaps they behave better towards patients with other, more easily treated skin disorders.

Hello, Naren's Mom... It sounds like you and your family are right where we were about 9 mos ago. When our son, Daniel, was that age (around 13 mos) was when we were at our toughest point. I think there is something to the age on top of the allergies and eczema. We were sleeping with him on our chest, his hands tucked underneath our arms. It was the only way to keep him from scratching. He was on the antihistimines, which sometimes seemed to help, sometimes didn't. I don't have any real advice except to hang in there, it should get better. Remember, that time does seem to help the little guys with eczema, along with finding the allergens or other culprits. We are not totally better here, yet, but Daniel just decided about a month and a half ago that night time was for sleeping, we even cut out the antihistime 2 weeks ago.

Helen, I think all of us Moms are at our wits ends sometimes. I feel the worst when Daniel won't stop scratching for anything---love, hugs, candy, toys... then I just leave him and say"just scratch then"... then I feel about 2 inches tall... but I just don't what else to do sometimes. Even Daniel's older brother can be heard in the bedroom yelling " stop scratching!!!!!!" Remember, we are all here for you and the support we receive from other people being in the same situation.

Yolande, Sounds to me like you may have a fungal infection. The description you gave of the condition of your feet is the exact description of my feet when I had a fungal infection. I went through *three* dermatologists before my condition was diagnosed correctly!

The derm prescribed Fulvicin tablets to rid my feet of the fungus. She also recommended that I use Miconazole Nitrate 2% (which you can get OTC) at the first sign of the fungus returning. I have, and it works great! My feet are now back to their original, gorgeous condition :-)

Hi Sarah, I was under the impression that Zirtec should be taken on a continual basis and requires a build up in your system before it is effective, much like Claritin. Is this incorrect? Will it be effective even if taken once the onset of symptoms has already occured?

I use Actifed or Dimetapp. Neither makes me drowsy but everyone is different.

I can tell you from experience that yelling "stop scratching" to someone in a scratching frenzy is like yelling "stop breathing". It only serves to make the yeller more frustrated and the yellee resentful because unless the yeller has experienced it, they can not possibly understand the torture that the yellee is undergoing.

As long as I shared a home under my parents roof the walls echoed with that same entreaty. I can recall thinking "Do you think I want to make myself bleed! Do you think I would do this if I had a choice!"

Many, many years later, well after I was on my own, my father had an allergic reaction to some medication. He told me he was up til 2:00 am in a scratching frenzy that he did everything to arrest. He took a cold shower, and when that didn't help, he sat out on the patio in sub zero degree weather in his pajamas. He told me he was ready to throw to himself out of the window and then added, to my immense satisfaction, an apology for all the times he screamed at me to stop scratching, "so help me, I'll never yell at you to quit scratching again, as long as I live", he promised.

I have found that Tavist-D works great for me.

The words "Stop scratching!" echo in my ears as I recall my own childhood hearing those words over and over. When I had an autograph book one year, I even had someone write "stop scratching!" in it, which felt humiliating. I regret to tell you that, in my experience, those words do absolutely nothing to help one stop scratching, and in fact, make a child feel worse, which leads to more scratching!

Having my parents and siblings and even strangers blithely tell me to just stop scratching, as if my problem was a simple matter of doing so, was so alienating. In effect, their words were a denial of my experience. Those words showed that they had no clue to the fact that my problem was not like a headache that just goes away from taking an aspirin. Those words showed that they had no interest in actually helping me DO something that might be helpful, like putting a cold washcloth on it, or taking deep breaths, or changing my clothes, or any number of other truly useful reactions to the problem. When those words are thrown casually at a child, the message is: your problem is simply a self-control issue and I can't help you with it at all. At least, that is the message I got from my family. They did not know how to help me and yes, by the time I was 3, I got the message that I was on my own in the world when I truly needed help, which is frustrating, frightening, and completely overwhelming, and yes, leads to more scratching.

Parents who see their child constantly scratching need to let go of their own reactions to what they see, and actually TUNE IN to the child's experience. Try to feel what she or he is feeling at that moment. Put yourself in that little body and pretend you are there. Now, with your greater wisdom, think about what might be helpful if you were feeling those feelings of being in that body. Obviously, you cannot make things better all the time. Sometimes the child is going to scratch. Accept that. But do try to have some useful input whenever it's humanly possible.

Remember, to the child, their skin is something they HATE, and want to destroy. They feel trapped inside this monster that is their skin. They need to learn to make peace with the dragon instead of trying to slay it. They have to make friends with it and learn how to co-exist with it. They have to be nice to their skin, caress it, stroke it, pat it, tap it, etc. more often than they attack it.

Try to imagine wanting to get OUT of your skin and feeling trapped inside. Perhaps this will help you understand the agony of the experience. Your child feels like she or he is fighting for life in that little body. The fierce scratching is the only weapon they know. You must show them there are soothing weapons too.

As someone else has said, Zirtek is a great, effective, non-drowsy antihistimine. It is available OTC in the UK (very expensive though). If I was sneezing from a cat I would use a nasal steroid spray as its not something I would be around all the time and the relief is immediate and quite long-lasting. Although I don't like using them for hay-fever as it means using a steroid for a long period.

Does anyone know of any horror stories of using antihistimines regularly or on a long-term basis - (apart from the Triludan, grapefruit juice, death one)? I am so pleased with zirtek I am wondering if its too good to be true.

Cool spell this past week and guess what??? EJ's eczema has almost totally vanished. No other new factors going on that I can tell. (He is still on his restrictive diet because we do know that some foods really mess him up.) HOWEVER, every time I let him outside to play in the heat with his siblings for even 15 minutes at a time, he would come back in attempting to rip all the skin off his legs... Have done this "test" over and over again. The only thing that has spared us from perdition has been the constant use of leotards on his legs and limiting his outdoor time. .

Now we have this week. From where I sit, EJ is definitely sensitive to the heat. I had wondered if it was a grass allergy, but he has been out there in it all week (in the cool), playing merrily. Nothing.

Clean air ducts are always wise, but I hypothesize that perhaps A/C may not be the bad guy. It MIGHT be the environmental conditions which force us to use A/C. Looking back through my archives, EJ's worst eczema began the day we had to start cooling the house... when things heated up! This cool spell is the first major break we have had with his skin since June. I am not even having to moisturize his skin at the moment!!!

Come ON Fall!

I found this in today's (8/9/97) NY TIMES:

"Psoriasis Patients Are Warned About Drug

Washington,Aug. 8 (AP) -- The Food and Drug Administration warned psoriasis patients today to contact a doctor if they are using a treatment called "Skin-Cap" because it secretely contains powerful steroids that can produce serious side effects. 

[snipped]

The psoriasis foundation has established a tollfree hot line that offers information on Skin-Cap. The number is (800) 723-9166.

>>>>>

Dear Dr. H.:

I saw you in the clinic on Friday August 15th. You probably forgot me as soon as I walked silently out the door. But I have not had the luxury of forgetting, because I am still suffering. The specialist you referred me to can't see me for 2 weeks.

Have you ever been ill, Dr. H.? If you can't sincerely say, at the very least, "Gee, I can see you're in a lot of pain. You must feel awful," you don't belong in medicine.

I entered your room in agony, and was openly crying while you examined me. Yet you conveyed no sense of compassion, no verbal or nonverbal sign that you even recognized my despair. I left more miserable than when I arrived.

Let me assure you that your conduct is not at all extraordinary. On the contrary, I am writing because behavior like yours is altogether too comand I have decided that I will no longer tolerate it in silence. From now on, I intend to try to raise the consciousness of those who are supposedly "caring" for the ill.

Let me give you the benefit of the doubt, Dr. H. Perhaps you weren't given any training on dealing with the chronically ill. So think of this letter as a bit of continuing education. When a patient announces that they've had continuing physical problems since birth 40 years ago, it helps to show some human response, such as saying "That's a long time to feel sick, I'm sorry to hear that." A blank stare really doesn't help as much as you may have been led to believe.

When a patient is clearly in misery, it is important to acknowledge that fact. To be invisible makes illness more painful. If you cannot alleviate a patient's problem, at least offer the sincere wish that you could do more to make them feel better. In my opinion, it's a matter of simple human decency. Most people would treat a dog caught in the rain with more sympathy than you had for me that day.

When you pretended that your referral to a specialist was all I needed, you hurt me terribly. You denied that I was in pain NOW. Did you hear me when I said I'd been suffering even more than my usual amount, every day for two weeks, and was at the hospital because I had reached my limit of endurance? When a chronically ill person says that they have reached the limits of their endurance, that means they are in an emergency situation. A chronically ill person's limit is forced to be much higher than a normal person's, so if a chronically ill person can't take it anymore, that should be a signal that something is wrong. Unfortunately, to you it's not an emergency unless there's blood spurting and the person is unconscious.

For the $200 I pay in health insurance every month, I would think I could get at least get a little kindness. Or is that too much to ask? Perhaps only when patients take their "business" elsewhere will health-care providers have the hindsight to realize that the "customer" should have been treated with some dignity and respect.

<<<<<

>>>>>

Published in the medical journal Making the Rounds in Health, Faith, and Ethics. Sept 23, 1996 issue. For permission to reprint: contact The Park Ridge Center, 211 E. Ontario, Suite 800, Chicago IL 60611.

Case Story: Lifelong Effects of Chronic Atopic Eczema

by Shelley

I speak as a 39 year old woman who has lived with severe full-body atopic eczema, and related atopic conditions, since birth. From the entangled twine of memory, I unravel a thin thread to present an incident from my childhood, with hope that it contributes to greater understanding between doctors and patients. I applaud the open eyes and ears of those in the medical community interested in the perspectives of those with chronic illness. I may be an unusual case, however, I believe my story offers something instructive about faith, care, and ethics.

As a member of an international group of eczema patients communicating via the Internet, I recently saw a posted message saying, (I'm paraphrasing here) "We've had to devise ways of keeping our son from scratching. We call him Houdini because of his ability to get his hands free. A sense of humor is certainly necessary with this condition, isn't it?"

Reading this brought shocked tears, not laughter. As a child I too was put into restraints in vain attempts to prevent me from scratching. Tragically, 30 years later, apparently nothing has changed for children suffering with this disease.

When the use of restraints began, I was 8 or 9 years old. The year before, I'd had an operation for removal of a benign cyst on my leg, and I'd developed a staph infection. At the time of the following incident, I was in the hospital for an operation to remove another tumor that had appeared on my left clavicle, so close to the bone that I nearly developed osteomyelitis. My left arm was affected and in pain. Consequently it was bound in a sling to prevent movement. My right arm was also incapacitated, held straight out and hooked up to an IV.

It was an awkward position to be held 24 hours a day, and extremely frustrating to be left without the use of my hands, as well as being confined to bed and restricted in all physical movement. I was in that position for nearly a week.

This situation would be uncomfortable enough for any child. However, what must be understood is the context of chronic illness in which it occurred. The use of my hands figured prominently in my eczema. I was accustomed to scratching constantly, so not being able to do so at all was a severe mental and emotional struggle.

Before entering the hospital for this operation, I had been learning to gain control of my hands. I had recently figured out a self-hypnotic pattern of repetitively touching my fingertips together, and had had some success tucking my hands under my buttocks as a calming mechanism. I was beginning to hold a handkerchief and other objects to keep my fingers occupied, as well as starting to slap, pinch, or stroke the skin comfortingly without using my nails. But I was in the early stages of this control, and frequently relapsed into scratching.

Put bluntly, it was torture for me to be unable to use my hands just when I was learning to use them in positive ways rather than destructively. My other good habit, reading, was also denied me, since I couldn't hold a book or turn the pages. Laying there, unable to use the few methods I knew for handling my overwhelming feelings, I was in agony.

It was hard to believe I could feel worse than I already did. When I tried to talk about my feelings at home, my mother invariably said "Honey, thinking about it just upsets you. Think about something else. Wait till your next doctor's appointment, sweetheart. You can talk all about it with the doctor."

Unfortunately, when I tried to talk to the doctor during office visits, he would be cordial but dispassionate. When I touched upon my misery and distress, he would stand up and say "We'll talk more about this next time." Crestfallen, I would look down and nod, knowing that next time would be no different. When the going gets tough, the visit is over.

Before coming to the hospital, my mother had said, "The doctor doesn't have time to talk in the office, he's busy with all the other patients that we see in the waiting room. When you're in the hospital there'll be lots of doctors and nurses and lots of time to ask them all your questions."

But when hospital staff came in, checked the chart and "saw" the patient, they didn't see me at all. On a superficial level they appeared to be concerned, but I could tell they were just being polite, doing a job, and didn't have time to care about the frustrated soul trapped in my little body. Their kind words were well-meaning but empty, obviously meant to pacify me while they made their escape. I heard many heave a sigh of relief outside my room. Clearly, everyone felt sorry for me, but no one was willing to engage me in conversation about my predicament. All I heard was the murmur of predictable platitudes followed by hushed sessions of unintelligible whispering in the hallway.

They couldn't say to me what I heard them say to other children: "Just take this and it will be all better" nor "It will hurt for a second but then it will be all over" nor "All you need is an operation and you'll be as good as new." So as quickly as possible they wanted to move on to someone whose problem could be solved.

In the day, there was a certain routine to my hospital stay. My parents made regular visits, and I had meals and examinations for distraction, though I remember shaking my head and legs, the only mobile parts of my body, and sobbing agitatedly. I recall my dad saying "C'stop that crying. Crying doesn't do any good. What doesn't kill you makes you stronger, you know that."

After dark, the real nightmare began. It was bad enough at home, where I rarely got a full night's sleep, fidgeting constantly and rearranging myself every few minutes. Immobile in that awkward position in the hospital, sleep was impossible.

I remember mumbling, "There must be a way out", over and over, my mind like a rat in a maze searching frantically for an exit. I tried every mental trick I knew. I promised God I would be good, urgently chanted magical incantations I'd read in a book on Merlin, and tried to recall tips from movies I'd seen about how people escaped prison and concentration camps.

At some point when a physician came in, I gathered my courage and announced "Doctor, I don't know what to do, I'm so itchy I can't stand it." I was hoping that small sentence would convey my vast unspeakable anguish and that the doctor, in his great wisdom, would be able to read between the lines. But instead he said (denying my experience), "Now we're taking care of that with the antihistamine you're getting so you shouldn't be so itchy."

"But I take the same thing at home and it doesn't do any good," I meekly objected.

"Well, you're in a different place now, and not being able to use your hands is the best thing for you. A lot of that itching is all in your mind. I think you've just gotten into a bad habit and that's what you've got to work on. OK? (said brightly, as if that solved everything) You do want to get better, don't you?" I meekly nodded. "I'm sure this medication is what you need, but you've got to give it time to work, kiddo. I'll see if I can get one of the nurses to read you a story or something."

The next time I saw my parents, my mother insisted that I probably didn't explain what I needed well enough and said "There are a lot of people here much sicker than you are. You're not going to die, honey. First they have to take care of the people who're dying. You understand that, don't you? Now you've got this nice private room, you lucky girl, look out the window and enjoy the view."

Later, when a nurse I considered "nice" came in, I spit out my entreaty as clearly as I could, to ensure that I would not be misunderstood. "Can you just sit down and talk to me about my skin?" For a moment I felt proud of myself for requesting what I really needed. But the nurse's response dashed my hopes in a way that I will never forget. "That's not my job, honey. I'm sorry but I have to make my rounds with medications and do my paperwork. What if all the patients wanted me to sit and talk? I wouldn't have time for all the important work I have to do. If I had nothing else to do, fine, but I'm busy, child, maybe the morning nurse will have a few minutes to read you a story or something. I'll make a note on your chart about that, OK?"

But I did not bother responding. I withdrew into myself as the truth sunk in. "That's not my job, honey." Her words echoed in my ears. I had held on past emotional exhaustion, telling myself that if I just asked the right person at the right moment in the right way so that they understood, then somebody would just listen and talk to me about what was going on. But now I realized it was hopeless. It didn't matter what I said or did, everyone's attitude was one of cheerful denial. "Things aren't as bad as they seem" was the consistent message. I was supposed to feel glad that I didn't have a terminal illness, when on the contrary, I wished there was an end in sight.

I was nearly out of my mind with desperation, overwhelmed by rage, shame, and the frustration of being trapped like a wild animal. To resist responding to itching is a maddening experience when the itch is all over your body and you are unable to give yourself even a minimum of tactile sensation. I felt my mind drift out of my body, and it seemed as if I was on the ceiling looking down, knowing what "she" was feeling, yet at the same time separated from "her".

As a final insult to injury, when I had to pee, the nurse did not answer my buzzer. I held it in for as long as I could before finally urinating in my bed. The sad thing is that I remember the release as gratifying. At least here was one instinct I was able to express. I remember feeling my body grow cold from the wet spot, and as I looked through the window, my mind floated out to greet the moon.

If it was only that one bad experience in the hospital, it would be a manageable trauma. But this was only the beginning of years of torment. Due to the hospital restraints, my skin did improve. My parents then decided to use restraints at home. Ropes, handcuffs, strait jackets, and other contraptions were used to immobilize my hands or tie me to the bed. I became obsessed with Houdini, the magician, learning his escape techniques. By self-hypnosis and willpower, I often managed to get out of whatever restraint they devised, and, feeling utterly triumphant, would tear my skin to shreds in furious revenge. The frenzied scratching that ensued was orgasmic.

To think of my "self" as my body was to feel insane. My developing ego had to separate my "self" from my body in order to survive. "It" was disgusting and doomed, not me. I wanted to destroy my body in order to save myself. I ended up in the hospital a number of times after tearing myself to shreds in a desperate effort to kill this beast who had imprisoned me inside it.

A child cannot articulate the excruciating horror of these experiences. It's hard enough as an adult. When no one acknowledges that you're in a crazy-making situation, let alone doing anything about it, your sanity is on the line. No one acknowledged the difficulty of my position. No personnel were assigned the responsibility of determining my ability to handle the emotional stress of the situation, nor was there anyone responsible for assisting me in doing so.

The use of restraints affected every aspect of my psyche. The limited scope of this essay does not allow for details of the long-term psychological effects. It suffices to say that the mind/body split has been a devastating legacy. I believe my ordeals with eczema led to my suicide attempts, drug abuse, difficulties in school and other restrictive environments, multiple rape and sexual molestation incidents, voluntary sterilization at age 21, continued need to live as a loner, and other post-traumatic stress-related conditions.

My parents were overwhelmed by doctor visits, trips to the pharmacy, and the task of constant care at home: the fruitless use of creams, ointments, pills, shots, tar baths, oils, massages, humidifiers, special soaps, special diets, herbs, vitamins, trying different clothes, detergents, and bedding, eliminating molds, dust, etc. Even a number of quacks were consulted, with more time and money wasted on useless remedies including eating only apples and meat, wearing only white clothes and redecorating the house in white, sitting on a vibrating machine, and a nearly fatal treatment containing lye which burned all my skin off. It was all my parents could do to remain optimistic in the face of my increasing despair.

When I reflect back on my mother saying "Think of something else", I now understand that she was speaking for herself. She survived my illness by distracting herself with household obsessions, fantasies of my condition miraculously disappearing overnight, and a passionate concern with pleasing the doctors. My father's coping skills involved hiding in the basement inventing electrical devices in his workshop and stoic insistence on not letting anything "get to" him. I now understand their behavior as psychological defense mechanisms. At the time, however, I was profoundly disturbed by their inability and unwillingness to directly communicate with me about my condition.

Most published stories focus on people who become ill at some point after a normal life has been established. Their stories show how illness changes their world and forces them to re-define themselves. What then of people like myself who are defined by illness ever since birth, and never get a chance to define themselves otherwise? With temporary illness, emotional trauma heals over time as the body returns to normal. With cases chronic from birth, illness IS the norm, creating an inverse of reference points.

Living with chronic illness provokes a mental process similar to the 5 stages that Elizabeth Kubler-Ross outlined for death and dying: Denial and Isolation, Rage, Bargaining, Depression, and Acceptance. The stages emerge in random order, over and over again, perhaps with periods of remission. But then illness rises up again, like the tide, and you are once more inundated and swept away.

There is such a large disparity between my world and yours. Communication from each side must be translated into the other's language and much is lost in the translation. Emotions are at the heart of the matter, separating doctors from chronically ill patients. Doctors are trained to suppress their feelings, take effective efficient action, and present an image of decisive competence. In an emergency room this is appropriate, however, the chronically ill require an emotional response. I'm talking about sincere human empathy for physical conditions that must be endured for the rest of your life.

The dilemma between doctor and patient can be described as the ultimate clash of opposites. The patient is sunk into her body, with the mind in danger of being completely submerged. She is drowning, not waving at the doctor, who is sunk into his mind and nearly divorced from his body, which is reduced to a tool for his will.

A doctor's care is especially important when illness must be accepted as a lifelong condition that cannot be cured. To be "in a doctor's care" is to have faith that the doctor cares enough to initiate and facilitate painful but necessary emotional discussions. The ethics of ignoring emotional care for the chronically ill is an issue that must be debated within the medical community.

As a chronically ill child, the doctor was an important role model. My parents and the doctors were my biggest early influences. On one hand I hated them all for ignoring my feelings, and on the other I wanted to be like them, numb to feelings. But it's a bitter lesson taught when a child is discouraged from emotional expression by those before whom she stands naked.

I assume that most people who have a temporary illness go to the doctor open to whatever assistance is presented. I carry 39 years worth of emotional baggage to any doctor's appointment and always show up reluctantly, weighed down by melancholy, suspicion, and resentful resignation. The doctor has no clue to understanding my apprehension, distrust, and suppressed fury, and has no time for a mournful litany of explanation. Medical schools need to better prepare students for working with patients like me.

Change can be incorporated in two essential ways. First, emotional intelligence should be developed and cultivated in medical school. When traditional medical intervention is ineffective, students must learn to switch to a different model of care, where what can be done is to sit down, listen, and sympathetically share the grief, frustration, and rage.

For the last several years, I have been invited by the University of California at San Francisco Medical School to give a lecture to the new medical students on their first day of class. I applaud this recognition of the pedagogy of suffering, however, the first day of class is quickly forgotten and the patient's perspective is lost under the accumulated weight of lessons deemed more important. Doctor-patient relations should be an entire course that is required of all students.

A second opportunity for change occurs when it is established that a case is chronic. At that point, the patient, and critically involved family members, deserve to be given options of talking with professionals and/or with someone else who has the same condition. As it is now, families assume that the doctor is taking care of everything, and doctors assume family and friends are providing emotional support. Meanwhile, the emotional needs of the ill person are ignored unless he or she is suicidal. I was told many times that I could get help if I was suicidal; otherwise my problem was deemed insignificant.

The system needs to consider emotional needs as part of basic care for chronic cases, without pathologizing the situation. It is rational and reasonable to be overwhelmed by the accumulated trauma of severe lifelong illness. To function despite disease, access to emotional support is imperative for mental health.

Despite the fact that there are millions of people with severe eczema, I did not meet another until I was 35 years old, and did so only as a result of a personal 5 year outreach effort. I have finally heard from, met, or spoken with over 60 people with severe full-body lifelong eczema. I'm sure that my suffering would have been greatly relieved if I'd been able to talk to them at a younger age. There are questions and stories that can only be fully understood by those who've shared that experience. Everyone in the eczema patient network has felt immeasurable solace in communicating with each other, exchanging support and information.

I always knew that I was not the only one in the world with severe eczema, but only when I actually met and talked to others, discovering how much we had in comdid I realize what I'd been missing. It's comparable to having a black child growing up in a white world without ever having met another black person. It's crucial to self-esteem that you meet others who look like you. And it's important for children to meet adults with the same condition who can confirm that it's possible to survive childhood and function as an adult.

I urge the medical community to take responsibility for assisting chronically ill patients in finding emotional support among peers and professionals. Doctors and patients actively working together can diminish the human tragedy of chronic illness.

<<<<<<

Hang in there, Helen! It IS frustrating. I DO sometimes want to swat my son's hands when he's scratching... For me, the trick is to express all this stuff, but not to my son. I do it mostly with my husband, and with a few friends who I have "trained" to help me with this. They just sit, and listen, and occasionally comment or smile at me, but mostly I tell them to just let me vent. And I do. I rage at them to stop scratching, I swat their hands, I yell at them, I even punch a pillow held against their stomachs (mostly I do this one with my husband... ) when I"m really mad--mostly at a doctor or something like that.

When no one's around except Isaac (my two-year-old) and me and I get in one of those frustrated moods, I tell him, "Mommy is REALLY frustrated right now, so I'm going to scream," and then I go to the nearest pillow, put it over my face, and SCREAM. Sometimes one scream does the trick, sometimes I have to spend a few minutes doing it. If there are words I want to say, like "WOULD YOU STOP SCRATCHING!", I don't say them so that he can understand them--like I change all the vowels around, but I DO yell them into that pillow. If I don't, they still seem to lurk around in there, only to pop out of my mouth the next time he goes after himself.

This seems to help, for me. I can be calmer, and more there to HELP him stop scratching. I know that HE really doesn't want to scratch, either--he's just powerless to stop... 

One other idea, and I know this sounds REALLY stupid, but bear with me. I have memorized a couple of phrases that I say when I am really frustrated with Isaac's skin, and I have actually practiced them until they just come right out of my mouth without thinking. One is, "oh, buddy, it looks like the itchies are really going after you now, aren't they?" another is, "Oh, you're itchy--can I help you?" I did this because it WASN'T automatic for me to formulate the situation as HIM facing a problem that perhaps I could help with; it was more automatic to say, "Isaac, can you stop scratching?". But that wasn't useful, esp. when he was really going at it and/or I had no attention left for him. By making these phrases roll right off my tongue, I start myself off on the right foot, AND I give myself two seconds to collect myself when I am about to go ballistic because he's scratching again.

P.S. Shelley: I so much appreciate your detailed, honest, and insightful postings about what having eczema was like for you as a kid. I grew up with a sister who had eczema that was as bad as yours sounds, and with a similar family reaction, I'm sorry to say. Your postings are very helpful to me in understanding what she went through, and in figuring out how to help Isaac. I know that we can't make up for your suffering, but please know that what you are doing is definitely saving some other little kids from a similar experience.

Anybody can know what it feels like to want to scratch your skin off and safely. For you non-knowers who want to understand, take 100 mg. of Niacin (Nicotinic Acid) not Niacinamide on an empty stomach. In about 15 - 25 minutes your skin will turn red from your little capillaries opening and filling with blood and you will ITCH! Need not worry, there is no danger in this just a side effect, in fact, this is considered a treatment in some disorders.

For you who try this, you will know what Shelley meant... 

And for those of you who think I'm going too far, remember the people who try this will only do it once and it's over, but for us, it's a constant.

I went to the derm a couple days ago and was told that I may have a couple other things going on. 

One is seborrehic keratoses. I originally went because of these blister-like (except not fluid filled) things on my shoulders. He said that it is no big deal, many people get them as they get older. (I'm 29) He also said that once they are there, they don't go away. Great. I then told him how lately it seems that being in the sun later gives me red, hot raised patches that later turn pink and scaly. He said it could be polymorphous light eruption, which is basically an oversensitivity to UV rays. I have also had some problem lately when exercising (just walking). My face gets sooo hot and red and stays that way for a couple hours. Then the next day, those same areas are pink and scaly. Same thing happens if I am particularly stressed, in a warm room or if I have an alcoholic drink. He said that this sounded like rosacea. These last two things are treated differently than eczema. 

I am now trying a sulfa lotion called Klaron. I am pretty excited about this strangely enough. Even though these things cannot be cured, only treated, at least I have some other options. The Klaron seems to be making my skin very soft. It looks better than it has in a long time. This doesn't help the eczema on my arms but at least my face looks a lot better. I just thought I would share this in case anyone else has similar problems.

Helen, I know exactly how you feel, as I'm going through a flare complete with the nonstop itching, with my 3-year-old. I, too, have a tendency to yell under frustration, but I have found that it helps to put us both in time-out. She goes to her room with the gate up, and I go to my room with the door closed, for about 5 minutes. She's free to play (or scratch) in her room, and it's relatively safe. This gives me a chance to calm down and re-group.

Once I'm calm, I usually offer to put something on the itch or give her a dose of "itch medicine" if possible. Sometimes a cool bath will help, or just taking off her clothes except her underwear while playing inside helps, as she often complains of "feeling sweaty" and then itching. At times I even offer to rock her and scratch the itchy spots for her.

Here's a hug for you and your daughter, too { }

Can anyone recommend a carpet cleaner that will get up the dirt and eliminate or neutralize odors (not mask them), yet is unlikely to cause a flare of eczema, asthma, or other allergies?

My son did not test positive to dairy on a prick test but we have seen a major improvement after stopping all dairy. As a side note, he did not test postive to eggs either but does break out in hives if he eats eggs. Give the no dairy some time, somebody on the list suggested at least 3 months.

Shaklee products -- Basic H (general household cleaner), Basic G (germicide) and Basic I ("industrial strength" cleaner), all non-toxic, combined with water make a great carpet cleaner. I use it in my home carpet cleaning machine.

Sometimes I wonder if the culprit might not actually be all the hormones regular commercial farms feed cows and chickens... I get breakouts from cow's milk, but almost never from goat or sheep's milk... and the one time I used some unpasteurized cream from a local organic dairy, I did not have a breakout, either -- but I've been too cautious to risk buying/trying a whole bottle of their milk... 

Our daughter is ten months and has had eczema since three months, we have been getting good results with a Chinese herb mixture taken internally and another used as a wash. We also do baking soda and the Chinese herbs in her daily bath. For us (and Arianna) the eczema is definitely food related, when her mom has any spicy foods we see a reaction in 6-12 hours from breastfeeding.

That's a good idea, Sue, and a good model for your son, showing that you can recognize when you are frustrated, and have found an outlet for it that's not self-destructive. And you have figured out how to frame questions in your own mind in a way that helps you recognize he faces a problem that needs help, rather than simply chastising him for lack of self-discipline.

Thanks Sue and others who've written kind words of appreciation. My committment to offering useful suggestions is definitely motivated by the desire to help kids suffer less than I did. It was very clear to me as a child that there was so much I couldn't explain, and that if my parents only knew what I knew, they could help me more. I remember looking at my mother and plaintively, desperately, thinking "Can't you see what I'm trying to tell you?" I hoped she had the power to read my mind, but she didn't. It gives me some sense of satisfaction to finally speak the words that eluded me as a child and have other children benefit from it.

But you parents have the hard day-to-day job of dealing with the situation. Understanding an agony that you don't personally experience is not easy. You all deserve a round of applause for caring enough to try and learn more about it, on top of all your other responsibilities.

I've been taking Zirtec every night since I was first subscribed it (a couple of weeks ago) and noticed the effects almost immediately. I've experienced no side affects that I know of and will probably carry on with it at least until the summer's over when hopefully I won't feel I need so much as the pollen count will decrease a bit. I guess it would be understandable that it builds up in your body and increases your resistance to allergens, but I couldn't tell you for definite.

Currently I'm cataloguing a book on Chinese herbal medicine. Although essentially for the academic, it seems to have recurring idea about the causes of eczema. It says that it's due to on overload of toxins (which most of us are aware about as it seems that our bodies have difficulty digesting some foods) and excess "wind damp". I was wondering whether anyone who works with/as or has visited a Chinese doctor could tell us a bit more about what "wind damp" means??

It may sound obvious but I've just made a connection, I think, between something in my diet and the way I feel. On working days I have All Bran cereal for breakfast and then feel quite bloated for most of the day which I don't think can be doing my eczema any good. Now, this cereal contains lots of fibre (maybe my body can't cope) and also wheat (which we all know is a common allergen). At weekends I generally opt for something different - a muffin or a bagel - and don't feel so bad.

What does everyone out there eat for breakfast and does anyone experience the same feeling after eating some cereals? Are there any suggestions for alternatives for a working girl with not much time in the morning? I need something filling and low fat - unfortunately a fruit breakfast makes me feel as if I haven't eaten properly. I know it's a tall order, but can anyone help?

Sarah, Maybe it is the milk that you are pouring onto the cereal. Haveyou cons