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 considered trying to eliminate or reduce milk products from your diet? This is what I am trying to do slowly. It is a difficult task, but I"m trying. I realize that if results do occur it will take a while to show.

Nobody knows the torture of being so itchy unless you've been there. I really try not to yell at my son to stop scratching because I also have eczema and know how hard it is NOT to scratch when you are itchy! Even saying that, I still try my best to stop Brian from scratching (hands especially) so that he doesn't cause bleeding. If I'm nearby, I try to rub/massage his hands or feet for him and that seems to help at least somewhat. Hang in there Helen ... seeing your daughter scratch is frustrating for you so try to help give her alternatives to scratching, and don't scold her when she scratches.

Bran is very well known as an irritant to the bowel. I'd steer clear. Try weetabix, shredded wheat or something a bit less heavy. Even wholemeal toast and honey - all nice, quick and quite healthy.

If you still have bloating then consider possible wheat/dairy allergies.

But I'm not surprised your gut doesn't like All-bran! The alternatives are all a lot tastier too!

My only concern would be that you don't want your daughter to feel she is being punished by time-out just because she needs/wants to scratch. I think it's fine if YOU take a time-out, while your daughter continues whatever she was doing, e.g., playing/scratching/whatever. When you return from time-out, I think it would be important to reassure her that you're not angry with her but just needed a break. I realize that my son is younger and so I can't relate to him quite the same way, but all the various ideas for venting frustration, etc. that the moms and Shelley wrote have been enlightening as I prepare for the future.

I like what Nancy said about not expecting someone who's scratching to stop. I have had eczema since about 2 yrs. I have memories of my siblings telling me to "stop scratching" during the night. Now my 9 month old has eczema and when he scratches I find myself saying the same thing--and getting that familiar frustration--until I remember how much I hate to be told to stop scratching. Instead I do for him what I do when I have itchiness. Either apply something cold, or put grapeseed oil on. I've been touting the use of grapeseed oil for a couple months now, though no one else seems to have tried it, it is working wonders for me and helping my baby. I bathe daily in baking soda, sometimes carefully rubbing off the excess skin, then I apply the grapeseed oil. Then my skin feels great until night, when I add a little more oil to any spots that are itching.

Just try to remember that scratcing happens because itching happens. Go for the itch, not the scratcher.

It has been the summer of unmitigated misery here. It has been one of the hottest summers on record, and we have no air conditioning. My poor Mollie (age 2.5) has not slept more than 2-3 hours at a stretch since late May due to scratching, every morning her sheets have been bloody, her skin has been as horrible as I have ever seen it, two episodes of skin infections. 

My efforts, which had previously been successful at keeping the eczema down to a dull roar (daily soaks, Aquafor, eliminate allergens, cotton clothing, double rinsed, etc etc) seemed to do no good. Twice we got home really late and I put her to bed without the soak - both times the next day was worst than I imagined possible. So, apparently those efforts were doing something -- I guess just letting her hold her own. 

The past two weeks have been among the worst of our lives. Between our mutual accumulated sleep deprivation and her physical misery, we were both at the end of our ropes. This Friday night I put her to bed about ten and noticed that it was cooling off a little. It began to rain in the middle of the night. I woke with a start on Saturday morning and looked at the clock - it was 10:30 AM. I leapt out of bed, horrified as to why I hadn't heard from Mollie all night. She was snoozing away. It was cool and damp. She slept until someone rang my doorbell at 1:40 p.m. - that's over 15 hours! She woke up a new person - smiling and happy. And her skin looked like new by Saturday night. It rained all weekend and is still raining and cool. She is happy, her skin looks good (a 4 on a 1-10 scale with 10 being as bad as she gets and 1 being perfectly clear). Saturday night she slept 13 hours. All summer I have been wondering if the problem was allergies (it has been a bad allergy year due to the hot days - everything bloomed like mad) or heat or some combination or something I couldn't identify. Next summer, I am going to buy a window unit air conditioner for her room. I am so happy my baby has some relief!!! Just had to share my joy with people I knew would understand. Wishing you all cool soothing rain showers... 

Just to add my own 2 cents, a good night's sleep will definitely do wonders. I know it is impossible sometimes to get to sleep but I find it now of upmost importance. When your body gets enough rest the skin will repair itself. I found that after getting several nights of good sleep, my skin looks a lot better and my itching had calmed down dramatically. I think the sleeplessness has to do with the skin being "messed up". After my skin healed I haven't had a sleepless night in over 3 weeks. Without proper sleep, the cycle will continue on endlessly it seems. 

One night I took double the amount of anithistamine I usually do. Well, it worked because I got tons of sleep and several nights of sleep after that(I don't advise this for everyone). If we never get the proper amount of sleep our skin will not heal. Sorry, I don't have any suggestions of getting Mollie to sleep but I do urge you to make it a top priority. When all the medicine, lotions,ointments did not work I found out all I needed was several nights of undisturbed sleep. This stopped my itch-scratch-no sleep cycle and so far so good. 

Our 2 year old daughter has had eczema for a year. Just before our two week vacation this year, her wrists and ankles were so badly broken out that she developed a staph infection. She was put on antibiotics and we kept socks over her hands for 3 weeks.

While on vacation, she develpoed pneumonia and spent 2 nights in hospital in a cool mist croup tent. We don't know if the cool mist did anything for her pneumonia, but the improvement in her skin condition was truly amazing.

Shortly after arriving back home, we purchased a window air conditioning unit for her bedroom. We use this in conjunction with a cool mist humidifier on top of her dresser. Of course, we also wash the entire family's clothes in Ivory Snow, and always use baking soda in her bath.

She still has the odd flare-up when she gets into the grass in the backyard, or eats her brother's peanutbutter, or pats a dog, etc. However, since we've had the A/C her itching frenzies are much less frequent, and she no longer needs socks on her hands.

Robin, Glad to hear the last few days have been better. My son had the "summer from Hell" last year and this summer has been great for us. He is on a strict diet. Anway just thinking that it is getting close to the end of the summer, so maybe things will be looking up.

Sage: Is grapeseed oil similar to jojoba oil? I tried jojoba oil and it made me itchier. If it's different, how would you describe the difference?

I just thought the All-bran was a healthy option being very low in fat. I had a honey, oaty, crunchy type cereal this morning and I don't feel as bad, so I'll try avoiding such heavy bran and see what happens.

The baking soda is gradually making a great deal of difference. I can soak my itchy feet in ice cold baking soda water, then moisturize or air dry, and they feel so much better. They're beginning to look better too. So thanks! 

Eczema is acidic and baking soda is alkaline, so it brings the skin back into balance thus relieving the itch. Use 2 cups for a full bath of water.

I'm trying a dairy-free diet and have had some success by eating rice milk (fortified w/calcium) with corn flakes or sometimes Cheerios (oat cereal). I've found that whole-wheat toast with jam will hold my appetite for a while, too (I choose bread without potato flour in it, because I'm trying to eliminate as many of the "nightshade" family as I can). But I usually have a snack of fruit or mini shredded wheat around 10:30, because I'm hungry again. 

I'm a terrible snacker too!!! Is rice milk quite readily available and does it taste ok on cereals etc.?? I will try these suggestions. I'm not sure whether I'm ready to completely cut dairy out of my diet. I think I'll have to investigate the alternatives a lot better so that I've got some good substitutes to prevent me starving myself.

Does Rice milk contain any soya products, I might give it a try. Lately, I haven't been eating my regular bowl of cereal in the morning, I have resorted to waffles and O.J.

I've also noticed that cool nights are better for my son Brian (1 yr. old). Last week the evenings were in the 40s, and he slept better. Also, last week we had him outside in the evening (cool 50s) at a carnival and both nights he slept so peacefully. Those 2 nights were the first in a long time when he slept from 10:30 to 5:30 a.m. We do have a window a/c in his room but he was still waking 2x a night. Being outside, breathing that cool fresh air must be more relaxing/soothing somehow.

So I guess I agree, COME ON FALL!

Hi, Sarah, I don't know why All Bran has such a great reputation -- it makes me feel bloated, too. In fact, most cereals do -- I suspect it's the combination of milk with the starch that makes them hard to digest (some people suggest moistening cereal with apple juice instead). One obvious solution is, if you have no trouble with bagels or muffins, why not eat them every day? They are certainly easy enough to take to work or eat on the way. You can get (or make in advance) some very good low-fat and even low sugar or non-dairy muffins. With bagels, try to find whole grain ones, or put a little nut butter on to make them more nutritious. Or try some protein with your fruit, to make you feel like you've "eaten". Happy breakfasting! 

I have been told that rotating foods is neccessary to keeping food allergies/sensitivities under control. By rotating I mean only eating a certain foods every four days. So you would have a set of four breakfasts, lunches and dinners that you would rotate through. i.e. here is a sample breakfast rotation. day 1: bagel (wheat), day 2: rice crisps with milk (rice and dairy), day 3: fruit, day 4: oatmeal (oats)

Anyways, this plan doesn't allow antigens to any one food build up to a critical concentration. Your immune system has time to "settle down" from any food you eat.

I don't like to jojoba oil either. Grapeseed, from the little I know of it, is used mostly by massage therapists for its light feel and non-greasiness. It is heavier than jojoba--more soothing. For me it smells lightly of grapes. I buy it at the health food store--only $6.50 for 16 oz. (NOW brand). I've been meaning to look up some info on the stuff, but with two kids I never seem to have time!!!

Since using the stuff, I've lost the permanent redness on my arms, am considerably less itchy (yeah!!!!), and my skin is softer--just ask my delighted husband.

I was afraid that like every other treatment it would stop working after two months, but it's been about four and it's still doing the trick. I hope it can help someone else since I feel so great. I haven't felt this happy with my skin for at least 4 years (except those 2 weeks after my first prednisone dosing before the eczema came back worse).

If someone else has any luck with it let me know. The best thing is that it's relatively cheap. And pleasant. Another note. Before using it I was having to apply full body moisturizer at least two if not always three--while still becoming dry in between. Now I feel almost normal!!

For those wondering how much baking soda to use, I usually add about 1/2 to 1 cup to my bath. Then I make a paste and apply it to trouble spots--so these days I don't have to make paste very often for me, just a bit for my 9 mo. old. My eczema is doing great. Hope others have success too.

Have you noticed any positive affects on your eczema, do you think, from using this rotation plan? Also, on each given day do you eat only one type of allergen eg on the day you eat the cereal with milk do you eat other dairy products but, say, no wheat etc?

Do you just apply the grapeseed oil neat and not mixed with any other moisturizer? I got a bottle of the stuff from a local supermarket but I feel a bit weird applying cooking oil!! I think I need some reassurances that it's not as funny as it sounds.

I know we all love to hear conspiracy theories to explain apparently irrational behavior. However, this latest Skin Cap flap seems to be related to the apparent deception by the maker/distributor that claimed it was "steroid free" If, in fact, it performs its steroid like functions better than some other product it should be promoted as the "world's best" steroid or the world's best immune system depressent, etc, not as a "natural alternative to nasty steroids."

I don't understand why there are people defending SkinCap!!! The SkinCap company lied to their customers. We trusted them and they lied! They are still in denial and they are still lying! If the product works, then why not market it as a treatment with steroids!! Why didn't SkinCap give us (the patients and the customer) the option of making an informed decesion? Why trick us?!

It is still my opinion that this company did something very very very wrong. It is my opinion that they acted on greed, not with respect, consideration, nor compassion, for their customers. I still feel they should be punish where it hurts. They should be fined and the money should go to E and P education/research.

If they still want to make and sell the stuff, then that's fine. As long as they are honest about what's in it and they apoligize for their lie with money. BIG MONEY. This is very important... A fine will discourage SkinCap and other companies from lying to their customers. If they get away with this, what keeps them from putting something else in it and not tell us?!

REMEMBER: We are people too! We must expect respect, honesty, compassion, love... etc. Just because we have eczema doesn't change this... Let us not be blinded by our skin ailment nor let us become so desparate that we turn our heads the other way when they lie to us. Let us always act with dignity and be treated accordingly.

There are no little white lies and SkinCap should know this... And that's the way I see it.

The main reason I send her to her room when I put myself in time-out is for her own safety. There are far too many dangerous things a busy 3-year-old can get into or do (like slipping out the patio door, setting off alarm systems, climbing onto kitchen countertops, etc.) if given free run of a house for even 5 minutes. So as you can see, it's much safer for HER if she's in her room playing while Mommy is in time-out. I tell her to go to her room because Mommy is going into time-out. She understands the difference in time-out for Mommy and time-out for discipline. She can play if Mommy is in time-out. But if she's in time-out she sits in a chair.

Some of you may remember how in June I raved about a book, Atopic Skin Disease, and urged you all to go get it.

At the time I did something else: I wrote to two of the authors (both with the Chelsea&Westminster in London), asking if they knew of anywhere in my country where their method was applied; and also to offer my assistance as a professional writer should they ever consider turning the method into a self-help guide. I concluded by asking them if they would write a few words on their method for the benefit or our list.

Today I got my reply. From the reference line I could tell it was dictated to a secretary, then typed; and in the VERY FIRST LINE, it mentions his full name and direct telephone line.

The reply was a long letter, carefully formulated. Dr. Bridgett (can't help it, that's really his name - <g> - Brigit) goes into reasons why so far they haven't been able to turn it into self-help, all very valid I'm afraid; he's thought about using computers and the Internet, but "the (... ) method is currently modified for the individual, prescriptions are required, and dealing with complications along the way is often part of the process and could not be anticipated or dealt with easily by somebody simply following a programme on a computer ."

Then he refers to an article detailing the method for the NES' quarterly (No 66, September 1992), of which he enclosed a photocopy for my benefit.

Then he tries to answer my question: No, as far as he's aware the treatment is not available where I live; but he gave me two (professional) contacts in my country to try.

And then he concludes: "With regards to writing something for your subscribers to the eczema mailing list, I would be more than glad to help. I am not at all sure what you would like from us - perhaps you could come back to me now and let me know and then I will do what I can."

So: DON'T dump ALL the derms!!!!

From my container of Rice Dream vanilla enriched:

Filtered water, brown rice (partially milled), expeller pressed oleic safflower oil, tricalcium phosphate [calcium], vanilla, sea salt, vitamin A palmitate, vitamin D2.

Comes in "unflavored" (but still slightly sweet; must be the rice) and cocoa-flavored as well. It tastes pretty much like milk over cold cereal, which might be the best way to get a fussy child to drink it! Costs U.S. $1.50 at my new super-duper-put-the-health-food-store-out- of-business-market (whoops, didn't mean to get political there!).

There was a discussion on the Usenet group misc.consumers.frugal-living a few months ago on how to make rice milk at home; you can probably find the post by searching http://www.dejanews.com with the phrase "rice milk" (in quotation marks). Basically, you whirl rice and water in the blender and strain, but I think that the taste depends on the type of rice you use. And there's no calcium or vit.D in it, so keep that in mind.

Well, if you're willing to sacrifice quality of life because some company "lied" to you, then that's your choice. To deny yourself a treatment that works because it allegedly has steroids in it which we are using anyway seems silly to me. Even if Skin-Cap does contain the steroid, the larger question everyone should be asking is how come a U.S. drug company has not developed a delivery system like Skin-Cap. 

These are the facts in my husband's case- he has suffered with severe eczema over 90% of his body for the past 4 years. He has seen the best dermatologists in the world and has tried all the traditional protocols as well as cutting edge treatments (cyclosporin and interferon to name but two) and nothing has worked as effectively as Skin-Cap. This past winter he had a very severe flare up and his dermatologist prescribed a mid-level topical steroid to be used daily. He followed the procedure and after two months he became resistant to the steroid and started to get thinning of his skin. In addition the steroid worked only in the areas where he placed it. He began using Skin-Cap (sparingly) on a daily basis in March and has been COMPLETELY clear since with no apparent side effects - No thinning skin or negative blood effects. My husband visits his derm at NYU almost monthly and has his blood checked regularly - 5 months of use and no side effects. I wonder if he could say the same if he had used Temovate on a daily basis for that long. 

You are right-we should ask questions - like how fast Glaxo can analyze this product and copy it so that it can be used responsibly. QUESTION THINGS - THAT'S HOW WE LEARN.

Cocoa-flavored Rice Dream heated in the microwave makes yummy hot chocolate. Chocolate soy does too, but it's a little "heavier" drink. Use the vanilla-flavored rice or soy milks to make great smoothies.

Karen, Thanks for clarifying how you handle the time-out situation and why (safety). I apologize if I offended you in any way -- I didn't intend to. It sounds like that is a very good way to handle your frustration with your daughter's scratching.

Just the other night my son kept on scratching his feet constantly. It was keeping him awake in bed too. I kept saying "Oh, don't scratch honey." as if that is going to help him any! You think I would know not to say such things b/c I don't like it when my husband tells me to stop scratching. So I now I've truly experienced eczema from both perspectives -- the sufferer and the person trying to help.

I went to see a skin specialist recently for an Eczema problem, they prescribed Eumovate, which I have subsequently learned contains corticosteroid. I found the following page while looking on the net. http://www.rxmed.com/monographs/eumovate.html

No mention was made by the so called "Skin Specialist" of potential problems (i.e. glaucoma & cataracts) Doesn't that just make you have faith in doctors nowadays!

I have decided to stop using this product alltogether, what are my chances of having problems later in life (I'm only 20 now) if I have used it on my eyelids approximately once a week for the last 9 months?

I use grapeseed oil like I would lotion or any other moisturizer. After my bath, I pour some into my hands and then rub it lightly into my skin. I use more in areas that itch more, less in others. I guess since I've tried everything on my skin it didn't seem funny to me. I've even tried honey--boy did that sting!

Chinese medicine (CHM) defines a couple of kinds of "damp heat" conditions that seem to me to describe both the oozy weepy eczema and the dry scaly eczema. They are both related to things like "excess" too much rich "heat producing" foods (a book on macrobiotic eating and the yin/yang of foods is helpful here). The eczema is in all cases related to the spleen, which in CHM is more than just that organ, it includes the "digestive energy and spirit" of the person. 

Children by definition are supposedly weak of spleen (not my baby... was my defensive father reaction..) which leaves them susceptable to things like eczema and colds. Remedies are mixtures of herbs and other things that have qualities described such as dispels wind and cools heat... pretty high tech... To summarize, it is a digestive and food thing, which I think correlates well to food allergies, leaky gut syndrome etc. I also have a theory about pH of the body and foods, and I am still trying to figure out why the baking soda baths are soothing... anyone have any thoughts on this? have a comfortable day! 

Robin, We keep our Air Conditioning set at 72 or 73, living where it is hot (100+) and dry, it seems we can tell a difference in sleep if it is just 1 or 2 degrees warmer, my dear wife sleeps in flannel pj's, I am very warm blooded and I keep covers on... Arianna has a short sleeved sleeper (organic cotton) and she will fuss if we try to put covers on her! 

Sarah, check out your local health food store or COOP, rice dream is great, there are rice milks, soy milks and some are very good, my wife (still nursing) has to watch out for the oils some rice milks have added for body, and she sticks to an organic rice cereal with no added sweeteners... bon appetite! Eat Organic! Ted

Tom cited a NEJM article touting etidronate for preventing corticosteroid-induced osteoporosis: "The 12-month results of the Canadian multi-centre study, led by Dr. J.D. Adachi and colleagues, show that Didrocal maintains bone mass and prevents fractures resulting from CIO. Didrocal is a non-hormonal prescription therapy that consists of etidronate disodium & calcium carbonate, currently authorized for the treatment of established post-menopausal osteoporosis."

I note that this was a 12-month study only. My recollection is that a study reported in JAMA last year that measured bone density in women using etidronate showed that women using that drug indeed had higher bone density than controls for the first two years after taking it, but that their bone density actually declined lower than controls by the third year. The conclusion of the researchers was that, in the long run, etidronate actually sapped the bones, or that the quality of the bone mass it produced was poor. There could, of course, have been differences between the formulation of etidronate used or the population studied in the present study and the one in the older study; but my conclusion is simply that it is important to continue studies over the longer term before embracing a new drug, promising as it may seem.

My own concern about Skin Cap is not that it is a potent *topical* steroid that just happens to work better than similar formulations in creams and ointments, but that it may be being absorbed *systemically* as effectively as oral prednisone, and with the same adverse consequences. I suspect this because in my own and others' reported experience (e.g. Nancy's husband), using Skin Cap on one part of the body resulted in clearing in other parts as well. It may be that the particular combination of excipients in Skin Cap provides a better delivery system for the active ingredient than do creams. For instance, I believe SC contains sodium laurel sulfate, which is a strong detergent that strips the skin of its protective barrier. Perhaps this is what is allowing SC to penetrate so effectively. That said, while I am furious with Cheminova and have stopped using the product, I really wish some reputable drug company would research the stuff and find out how and why it's so effective and whether a similar product could be made with minimal side effects.

I just read the insert that came with my steroid ointment. I was surprised to see a warning that I had never seen before. It said: "Systemic absorption of topical corticosteroids has produced reversible hypothalamic-pituitary-adrenal (HPA) axis suppression, manifestations of Cushing's syndrome, hyperglycemia, and glucosuria in some patients. Conditions which augment systemic absorption include the application of the more potent steroids, use over large surface areas, prolonged use, and the addition of occlusive dressings. Therefore, patients receiving a large dose of a potent topical steroid applied to a large surface area or under an occlusive dressing should be evaluated periodically for evidence of HPA axis suppresstion by using the urinary free cortisol and ACTH stimulation tests."

I have used the most potent topical steroids all over my entire body for 40 years. The possibility of HPA suppression, or any of the other conditions noted, has NEVER been mentioned to me. And I have never been evaluated using the suggested tests. The loss of bone mass problem that has been documented elsewhere has also never been discussed.

I am furious at the negligence of the doctors. Someday I may file a class-action lawsuit. I'm sure many of you would join me. I am so disturbed right now. I've just come back from the doctor's office where they did absolutely nothing for me. I pay $200 a month for health insurance and seem to get very little for it. I feel miserable and disgusting and every single part of me itches even more than usual.

I have to tolerate such a high level of alienation from my body every single day of my life. I am expected to function in the world so I find ways to ignore my usual miserable feelings. It's a high-wire balance act. When something else is added to the weight of the burden I must carry, I collapse. This disease is so disrespected in the world that it makes me want to stand on my roof and scream! It's as if someone's house was burning down, and the firefighters say, well, we have worse fires somewhere else, your fire can wait.

There is no sense of emergency when it's the skin. Despite crying hysterically in the office, and obviously looking like something the cat dragged in, I am simply handed a piece of paper referring me to dermatology. And dermatology says the next appointment opening is in 2 weeks. What I'm supposed to do in the meantime is not their concern.

I know you all understand. This message is just a way to vent my frustration. There's no need to respond to it. There's nothing anyone can do other than shoot me and put me out of my misery. This disease is a curse that I've lived with for 40 years and sometimes it's just too much to bear.

I can't blame the doctors for my curse, but I can certainly hold them responsible for not monitoring the long-term side effects of the medications they give. When I do show up in dermatology in 2 weeks, I intend to make a stink about it. I'll let you know what they say. And I intend to contact the dermatology association, asking for their official policy on monitoring the use of these steroids. If the doctors aren't following the policy, then they shouldn't be licensed professionals.

I was thinking about how I deal with my skin and I realized some of what I've figured might help others.

For me, there are three factors that affect how I react to my skin. 1. How it feels to the hand when you touch it. 2. How it looks on the outside. 3. How it feels on the inside.

I have learned that when it looks awful, and feels disgusting to the touch, that those two elements can trigger a scratching attack, which makes it look and feel worse. The way it looks and the way it feels on the outside also trigger feelings of self-hate and misery, which again worsens the problem.

Anyway, what works for me is when I can IGNORE what it looks like and feels like to the touch. If I can distract myself, and not look at it, and don't touch it at all, I can often maintain some semblance of control. If I can just focus on the third element, judging by the way it feels on the INSIDE, I often do much better. This requires the ability to separate the way it looks and feels to the touch, from the way it feels on the inside. This can take a long time to learn how to do, but for me, it has worked wonders. Of course, if you tune into the inside and it feels awful as well, then you're in trouble, which is what happened to me today. But MOST of the time, when I tune in to the inside, there's a neutral feeling that I can live with.

I don't know if this will make sense to others, or be applicable in any way, but I thought I would mention it. Also, a key factor is control of overall itch. I have found success with using Rx strength Tavist twice a day, but others will have to figure out something that works for them. My method of inside vs. outside probably works only if overall itch is under control. 

This tends to confirm my suspicion that SkinCap contains DMSO, as DMSO has the unique property of being able to be absorbed into the bloodstream via topical application... DMSO is also a 'carrier', meaning that it carries any substance it is mixed with directly into the bloodstream also... 

I know that both SkinCap and Dermazinc have denied using DMSO, but we've seen how forthcoming with the facts/truth both companies have been... 

I suspect it's more a case of there being a deficiency, then each individual expressing varying symptoms due to the deficiency... We've found in the past that 'officials' don't seem to have a clue when it comes to eczema, I suspect there are as many 'causes' of eczema as there are sufferers... 

Donna, know that I'm not disagreeing with you at all, you and Lynn raise a good point but I think the Pro Skin Cap people overlooked the reason why I know it is more effective than just the steroid but still doesn't explain the healing of non-treated areas. As a whole, I know very few people with E that address the bacteria aspect of their E daily, which by the way needs to be addressed daily, and Skin Cap addresses both issues by adding Pyrithione Zinc. If you're fighting bacteria the steroid alone won't work and the stronger the steroid, the more you have to pay attention to the bacteria aspect. It would be nice if a RESPONSIBLE company would address both issues.

Docs are trained to treat symptoms and to prolong the disease, this is their money maker. We know so much about how to cure so many diseases from research but a doc will not lead you in that direction as he'll loose money, he's watching out for himself before he watching out for you. Think about E itself, you go to a doc and he gives you steroids and antibiotics of which neither of these will ever cure the E, only make it happy for the moment while we destroy our bodies from the use of these drugs, which create new diseases for ourselves. Oh goodie, new diseases to treat, now we can start seeing more docs. If you're putting your faith in docs, don't ever expect to rid yourself of the disease.

If they care, why do they treat symptoms instead of causatives? Why do docs give you meds to rid the rash temporarily but won't give you anything to fix the cause. The disease is internal.

Not all research is funded by drug companies and when they do fund research they aren't necessarily looking to falsify the research but to find something new that will able them to promote a drug of theirs as a treatment but it doesn't mean the research is tainted.

And for you who don't know my position on docs, I understand how they were trained and understand why they practice the way they do and can accept this but will never back it. I also believe that there are some descent docs out there trying to make a difference but very few. Let's not forget that these docs almost killed me with there steroids and antibiotics, they instructed us to make funeral arrangements. So to that person who's writing a book for kids and stated that we should always follow the doctor's instructions, that's real bad advice.

Skincap provided more relief, even more than steroid shots, than any other treatment for me. My dermatologist said that applications of the most powerful steroid creams never came close to providing the same relief "SkinCap" did for his eczema patients. I only use it about once or twice a week for about a total of ten seconds and for the first time in years I have been willing to wear short sleeves. I still have two cans left. What then? What then.

Just thought I'd let everybody know I'm back on CHT (Chinese Herbal Therapy). I've taken 2 days worth so far (no immediate effects yet). Since I've had success with it last time (2 weeks worth), I've asked my aunt to mail me some more herbs. It is a different formulation this time but it still tastes nasty! Anyway, so far the only thing I've had is some stomach discomfort. I remember this happening last time and I think my stomach finally got used to it. 

My son seems to have better luck with vinegar than baking soda. Am I just imagining this after all the pH stuff I have read?

Regarding the systemic effect of Skin Cap mentioned by Lynn, that has not been my experience. When I initially purchased the skin cap, I was skeptical, as is my nature. I used it on the eczema, but on only one patch of my psoriasis. In a few days, I noticed that the patch on which I was using the skin cap was clearing up, while the other patches of psoriasis were as ugly as ever. I continued this for just a few more days, at which time, since the one patch was virtually clear, I decided to use it on the rest of my psoriasis. Those patches subsequently cleared.

Although the "trial" was very brief, the rapid clearing of just one of the patches of psoriasis makes me think that no systemic effect was involved.

I have to agree with Melinda, in my experience the Skin Cap showed no systemic effect, several small areas that I did not treat with Skin Cap are still ugly, dry and scaly. Unlike some of the others who stocked up on Skin Cap, I could only afford to buy one can at a time, and like Howard I am dreading the condition my skin will return to when I stop using it. Nothing else that I have ever tried has ever cleared up my skin nearly as well as the Skin Cap did.

Date: 16 Aug 1997 From: Megan Subject: injuries turning into eczema

Several weeks ago I got a blister on the back of my heel from a new pair of shoes, instead of eventually healing, the blister is now a new patch of eczema. Does this make any sense? Is it possible that I am somehow spreading the disease on myself by scratching or perhaps picking at the blister?

Abstract BACKGROUND: Atopic dermatitis is commonly colonized with Staphylococcus aureus in high densities.

Copied from a study, point being, don't ignore the bacteria aspect of eczema.

Well my eczema has definately been going through some crazy cycles that I totally can't figure out. Does anyone have a treatment (non-steroid based) that treats that horrible sunburned look? The two patches on my forehead are back just lately and I can't do a thing about it. I haven't used skin cap in months, even when I did, I did it for a very short period of time. But, now, it's sitting in my bathroom cupboard just calling to me! But I don't want to solve the problem that way.

Another thing that is driving me absolutely crazy is my SCALP ECZEMA!!! HELP. How do I get rid of it. It's really hard to put ointments there cause of all the hair. My hair gets really oily fast because I"m always scratching my scalp.

When I first went to university, my scalp had a total fit! It was scaling, oozing, flaking horribly. I was sweeping up heaps of dead skin off my pillow every day. I suffered for my whole first year of university with it. I tried t-gel, cyclocort, tersaseptic, and a whole bunch of other things and it just wouldn't go away. I was so desperate I almost shaved off my hair. At the end of first year, I went to a derm to have a wart burned off and mentioned the scalp eczema in passing. I was given some kind of steroid shot, after which the eczema cleared up slowly. That was four years ago and I haven't had scalp eczema since. I still don't know what caused it, but that's what worked for me.

I remember reading somewhere that tea tree oil kills staph bacteria, and is one of few substances which specifically goes after this bug. 

In the past, I have express my opinions about SkinCap rather strongly. Although my feelings about SkinCap has not changed, I know now how valueable SkinCap has been to some P and E sufferers. With that in mind, I have realized how insensitive I have been with my opinions towards people who have found a treatment by using SkinCap. For those people, I apologize. I share your pain and anger for a solution to P or E because I, too, am still searching for my solution.

With that said and done... I have notice that many of the members are "tuned in" to the reason why SkinCap works. Another thing that I am noticing is that many of us are waiting for a REASONABLE campany to analyze SkinCap. 

Has anyone looked into the possibility finding out the ingredients to SkinCap? Does anyone have any idea on how to do this? If Cheminova won't provide us with the ingredients, can we possibly get it through a patient agency that they had to file with or can we obtain possibly it by having it analyzied ourselves? What kind of professional could analyze SkinCap completely? Where can they be found? How long would it take for an expert to determine the ingredients? How much would it cost?

Group, First idea of two ideas: Could analysis come from the testing labs? Do they release that? I agree an analysis would be useful especially if we want to try my second idea, which I believe is approximately where Nelson was heading.

Second idea of two ideas. I have long had a theory about steroid ointments and creams. Background to theory A dermatologist warned me long ago that creams cause problems. My new dermatological says the opposite: ointments cause problems. Perhaps the formulas changed. Theory In any case, how about delivering the medication with no base. "SkinCap" may be doing something close to that, since it is sprayed with only some kind of light lubricant, I think. Perhaps the vehicles have been causing problems and the steroid they deliver masks the problems to some extent so we really don't know that the vehicles are causing problems. "SkinCap" may be avoiding that problem and really allowing the steroids to do their job, without aggravating the skin at the same time. If the "SkinCap" does have an antifungal ingredient that could be a major factor too, of course.

Could your doctor prescribe a concoction that the pharmacist could mix that would contain something as close to "SkinCap" as possible, as much as we are aware? The ingredients would all be FDA approved. They would be put in a finger pump spray bottle. Is this allowable? I remember the days when the old morter and pestle were used by pharmacists. I don't see that any more. Perhaps they are limited to commercially prepared products. I'll ask my dermatologist and pharmacist. You guys ask yours and let's see what happens?

Of course we could ask to use the vehicles only as a test. I asked that once and was told it was not possible. Anyway the vehicle in combination with the steroid may be the problem. Perhaps the vehicle alone does not cause problems. The geniuses at the pharmaceutical companies must check this out in some way. Right?

Mallika, Try this for your scalp. Take aspirin, if you can, and vitmain c to reduce the itching. Stop using everything on your scalp. Rinse gently with with warm to cool water while GENTLY massaging or GENTLY brushing your scalp. Use cool to cold water during the two last two minutes. The colder the better. While you scalp is still wet, there may be some itching. It will pass. Hold on.

After your hair dries go out in the sun for while. Go at noon, so you perspire a lot. Let the sun shine on your affected areas. Be careful not to overdo it. If you are not used to the do only 15 minutes or less. Do not burn.

Shower again repeating the procedure above GENTLY. Apply Vaseline to entire scalp with finger tips GENTLY. VERY GENTLY massage and brush in the Vaseline. It may feel greasy, but this subsides through the day. The greasy feeling is much more desireable than the itching.

Repeat this as often as you can. You will also find it relaxing.

Some people find that simply using "Head and Shoulders" solves their problem. It does have strong perfumes, as far as I know. But you might want to try that first.

Ask your doctor about the persistant red area. If it is a mild infection, the sun should help.

Just a couple days someone told me that she used vinegar on her eczema and it cleared it right up, and I thought she was nuts. Does it really work? Doesn't it burn, though? I would have no problem trying it on myself but I'm hesitant to put it on a 3-year-old.

My daughter once pinched her finger and had a small abrasion that turned into an infection that took forever to heal. It finally healed after trying AkneMycin (prescribed by the derm), then Temovate (prescribed by the allergist). If she gets a cut or scrape, I try to get an antibiotic ointment such as Neosporin on it immediately, no matter how insignificant it may seem. That seems to help.

This past Friday I took our 9 month old, Isaac for his monthly visit to his allergist at Children's Hosp. People on the list have complained about derms and I'd have to agree. For us, this Allergist who has a specialty in atopic dermatitis has been a much better alternative: while she strictly adheres to western medicine, she has been open to trying new things and has supported our decision not to use topical steriods if possible. In addition to incorporating ideas from the list (grapeseed oil, jojoba, baking soda baths) we are also repeating a study done in Finland using lactobaccilus and we are doing IVIG (intraveneous gammaglobulin infusions) for chronic infections (attn Shawn).

Anyway, this post is to tell you all about some things I learned at this appointment. While waiting patiently in the exam room for the doc, I grew impatient and took a stroll with Isaac out to the hallway. There I noticed (snooping, I know) an internal memo which I think had also been sent out to all a ton of derms looking for children from ages 2 up with severe AD (eczema) who might benefit from interferon gamma therapy. The memo actually said something to this effect: As you know, atopic dermatitus is extremely difficult to treat and so far, we only know how to treat the symptoms. Interferon gamma therapy offers a way to treat the source of the illness. Well, I asked our doc about it and she said she was leading the study. According to her, she feels it is extremely helpful (and safe) --she added that if I posted anything on this list I should tell people doing it that they should keep it up for at least 6 months (a weakness of her previous study, she said, was that it was only a 3 month trial). Anyway, we're a long way from ever considering this treatment for Isaac, but I now have a copy of both of the papers she wrote. If people are interested and the listserve permits me, I can give you the article source so that folks can access it.

Also, as we continued to talk she told me about the newest therapy which she predicts will be very big. It's a topical immunosuppressant which is often used in liver and kidney transplant patients. Called Topical FK506, this medicine is put in a petrolatum base which is applied to the skin. According to our doctor, it "heals" the eczema lesions without the side effects of topical steriods. Obviously I understand very little about this medicine but I am bringing up here to see if anyone else has heard of it or even tried it.

This is a great idea, Howard. Can we get the analysis reports from the labs that tested SkinCap? Does anyone know? What is the procedure? Who do we ask? Where is the information? When can we get the reports?

If the information can not be obtained or does not exist, Can such analysis be done? Who could do it? What is involved technically? Where do the find a professional (or lab) that can do the analysis? AND How much will this cost?

FINDING OUT (1) WHAT IS IN SKINCAP AND (2) UNDERSTANDING HOW IT WORKS IS WHAT WE NEED TO FOCUS ON AT THE PRESENT.

Finding answers to SkinCap will allow us to:

1. Determine if the active ingredient and the vehicle ingredients can be safe. 
2. Determine if it is truly a viable treatment. 
3. Determine if it can be easy cloned and in what manner should it be cloned. 
4. Determine if we should just continue buying SkinCap from distributors. 

Howard, I believe your idea for obtaining a prescripion for steriod in close to raw form and having a pharmacist mix in a vehicle ingredients is clever, but I believe it is too early to talk about a method for cloning. I feel we need to find out what's SkinCap made of first! Don't you think? 

Yes, any doc can order up any special mix but it gets expensive, 3 - 4 x's more expensive, I do this sometimes still when I want a special preparation but then you run into the problem of not being covered by insurance for the people that still can have their skin covered by insurance. For costs reasons, we need a company to develop a new formula and put it on the market.

Okay, my third day back on CHT (chinese herbal therapy, pay attention, last time I'm spelling it out!). My torso is very smooth now with NO redness (okay one little scratch not related to eczema. Don't ask, it was clumsiness!). Anyway, I still have a little stomach upset when taking it but it's better when take food before AND after drinking the Exxon Valdez looking potion. 

So, my lower body seems to be okay but my face is the problem (sounds like something a kid would say to insult another. little boy: "oh yeah, well, your face is the problem!". Whoops, went off on a tangent. I forgot to mention that for the first 5 days I'm suppose to take a pill after the second dose. The pill is very small, 1/3 the size of a Zyrtec. I have NO IDEA what the pill is but have been assured it has no steroids in it. I am also watching my diet very closely b/c there are numerous things the herablist told me not to eat (e.g., beef, shrimp, shell fish, chocolate, fried foods, and others). 

I use a little vinegar in the bath water, like you would for a sunburn. I swear that my son has gotten the itchys from the baking soda when we tried that. 

Dear Mallika, I know exactly how you are feeling with your Scalp Eczema. Mine has been particularly bad in the past couple of weeks.

I got to the point last week that I tried to call my Chiropractor and a Chinese Herb Therapist from work, and didn't get an answer from either. I was so itchy it almost reduced me to tears. Anyway I looked at Christines webpage for the first time in ages and decided to try out her suggestion of not using shampoo so much.

This sort of thing is difficult for me as I am obsessive about having clean hair. However for the past 3 days I have only used warm water, until today where I felt desperate for a bit of a clean and used Ti-Tree and Thyme shampoo.

The point of this essay <S> is that the 3 days of no shampoo were the least itchy days that I have had in a long long time. I am going to try and stick with this.

Another thing that I did was a recommendation from someone a few months back, and that is shaving my hair. I have long hair and my eczema is on the lower part of my head, so luckily I can sweep the rest of my hair over the shaved patch.

I will say that I realise this is drastic, and that as soon as the hair starts to grow back the eczema seems to come back exactly the same. But for times of desperation I still resort to the razor.

Date: 17 Aug 1997 From: Howard Subject: Eczema factors List. Please add.

The skin should be slightly acidic. Vinegar also kills mold mildew fungus but I am not sure in what strength it would be needed to do this. Perhaps keeping the skin at the right pH will inhibit fungal growth.

Eczema is not one simple thing all the time, as we have read here about the benefits of anti-biotics in the treatment of eczema. Eczema is aggravated by many factors. Perhaps a list of those factors is in order.

List of Factors which contribute to Eczema

1. allergens: food, contact, inhalents
2. scratching because of itching because of
• allergens
• fungus
• infection because of insufficient sun exposure
• infection from other sources such as dirty fingernails.
• lack of lubrication
• healing skin
• unrinsed skin
• overuse of soaps
3. scratching because of tension released by scratching instead of other ways
4. nutritional deficiency or a greater need for some nutrients
5. a need for touch
6. pH balance
7. genetics
8. short nursing periods?
9. exposure during pre-birth to smoke, drugs, poor nutrition?
10. need for cleansed digestive system 

Nelson, My dermatologist told me "SkinCap" is banned. He is calling all patients who bought some and asking them to bring it back and or not use it. So it looks like we won't see it for years, unless you folks know something different.

I cannot see waiting for years. So I am going to pursue the prescriptive concoction idea and see where it it goes. I am sure that there are all kinds of reasons for not doing this. Not doing it would put us right back at zero.

I encourage you folks to try this route too and see what happens. Ask your dermatologist to prescribe a liquid steroid with no base except water or alcohol or whatever is the very simplest. No creams or ointments. Include in the precription something that is an antifungal and a very light lubricant. Put it in a finger pump spray bottle and use it VERY SPARINGLY AND VERY SELDOM in areas away from the face. In this way if there is a problem with the lubricant it can be switched with the next prescription.

My mom put vinegar on my eczema when I was young, and I must say it hurted like hell. (In fact it still gives me bad memories). I would cry for a least an hour each time she put it on. After two or three weeks, she couldn't bear seeing me in all that pain so she stopped. She also stopped because there was also no improvement in my eczema either. In retrospect, I think that the vinegar may have helped if my eczema was not so severe. My skin was always oozing and bleeding. Putting vinegar on an open wound not only hurts but the thought of her coming to put vinegar on my skin gave me a whole ton of stress. This stress made me itch and thus aggravated my eczema even more. It was a vicious cycle.

I am NOT at all sure about this, but I THINK that you can only test for the presence of something that you know that you're looking for; I.e., you can test for substance X or substance Z, but you cannot just go and find out what's in any given concoction.

Now, if Cheminova had PATENTED the stuff at some point, then the formula would be public (in the patent registration papers). However, the existence of copycat DermaZinc implies that SkinCap was -- unfortunately for us -- NOT patented.

Perhaps in some of us, with some types of eczema, the skin is too acidic (so that baking soda would help) and in others, the skin is too alkaline (so that vinegar would help)? Also, vinegar is a drying agent, I'd expect it to be good for wet eczema but not dry.

Re: INTERFERON: Nothing is ever completely safe for everyone -- which is why trial studies are done.

I can understand the theory behind using immunosuppressants, as they suppress the body's response to what it thinks is an 'invader', whether bacterial/viral, or an organ transplanted from another person; in our case, our body is producing a cytotoxic response to its own antigens, which it for some reason interprets as 'foreign'... and an immunosuppressant would conceivably minimize, if not eliminate, such a response... 

BUT... and it's a big 'but'... there is a reason organ transplant patients are flooded with antibiotic and antiviral agents after surgery, and kept in a biologically 'clean' room for up to weeks afterwards -- because the immunosuppressants they are given suppresses ALL immune responses, including the natural ones the body produces to ward off disease and infectio, even the 'common cold' can become a life-threatening condition for people utilizing such immunosuppressants...

So while I wouldn't discount offhand using such agents, especially for those who are severely affected with eczema, meaning over a good part of their body, to the point where it SEVERELY affects the quality of their life, anyone utilizing such agents must be made aware of the potentially severe side effects of such use...

For me, I'm not about to use immunosuppressants just to clear up the patch I have on one finger... 

I'll tell you guys the cheap out but have your doc verify the right steroid strength for you personally to mix. Take a steroid stronger than your daily used one and dilute it with Bactroban and use this as your daily. Currently Mupirocin (Bactroban) is the most effective at killing staph topically. This will be cheaper than having your doc prescribe a special mix. Mix this yourself.

Liquid steroids with no base except water or alcohol already exist but they don't like you to use the alcohol ones daily and I agree. I've played with this before and it's hard on the skin.

Tea Tree Oil is antibacterial and antifungal, it is strong, for our baby we dilute it into another oil or into witch hazel, but it is good, we use a tea tree oil shampoo that seems to really sooth her scalp.

Baking soda did not work on my 1 1/2 year old, it made him itch.

I can test tea tree oil in the lab. We routinely do antibiotic sensitivity tests on organsisms which we keep stocks of, as well as normal flora (from our own bodies). I'll let you know the result.

You're so right, Shelley, to point out the different levels at which we react to our skin. It is true that the physical and the psychological vie with each other in determining how we feel about our skin at any moment.

The way we look, or think we look, to others is certainly a major factor in how disabled we feel. Sometimes I think I would rather feel twice as bad inside if it at least weren't so visible. But in order not to stay in bed with the covers over my head every day, I have had to learn to develop "thick skin" about what I look like. Today, for example, is one of those "paperbag" days (I.e. to hide under) when anyone in the "normal" world would have taken sick leave from work. Perhaps due to swimming in a chlorine pool, my already bad eczema went through the roof and this morning my eyes were welded shut and my whole face is puffy and beet red. And yet, here I am at work as if it were just another normal day. (Good thing I don't have to deal with the general public in my work, and my colleagues are generally compassionate).

Sometimes, on the other hand, when my skin feels OK internally, I forget about it and then am amazed when I look in the mirror and realize how bad I must look to everyone else. But since it is then too late to feel self-conscious, it is like having had the benefit of anesthesia to get through an unpleasant experience, and I figure, it is not so much the experience itself as our perception of the experience that makes it good or bad. Anyhow, all this to say that I do think it was helpful, Shelley, to remind us of the many levels at which we experience our skin and the meanings we attach to each level.

I have eczema on my left foot pretty bad (toes in particular) and a patch on my right foot. I have some on my fingers from time to time. With my left foot it started as an infection in my little toe where it swelled up and had a lot of pus in it. Then the eczema set in. It has now spread to all my toes and some on my heel. The infection never came back. I am now having to take oral steroids for my foot. I later had a infection on my right foot on my little toe due the same thing. I now have a patch of eczema on my little toe. I had no problem till the infection. I can not help but link the two. All derms and docs that I have talked to so far have not been interested in the very obvious link.

I find Head and Shoulders has been marvellous for keeping my scalp calm and free from any lesions - try it

After using Head & Shoulders, my scalp worsened. Within hours it became bright red and felt severely burned. The scaling increased dramatically. I have tried it a number of times and each time had the same result. Part of my current misery is that my scalp has still not recovered from my last experiment with Head & Shoulders. So beware, it is possible to react to pyrithione zinc. I have not tried skin-cap because it uses that same ingredient and I assume I would have a similar reaction. 

Elisabeth mentioned FK506, otherwise known as tacrolimus, which is an immunosuppressant. Last I heard the topical form of tacrolimus was still in clinical trials. Good results have been reported, but it is not yet approved for AD. It is therefore very expensive and not covered by insurance. My adult daughter tried it for several weeks on her face. It seemed to help for a few days, but then did nothing. The pharmacist mixed a low dose for her since she could not afford more.

Valerie had an appointment with our naturopath last Friday. It was determined that Valerie has leaky gut syndrome. Many things led to this diognosis: changing food sensitivities, eczema (of course), ridges in her fingernails (indicating poor absorption of nutrients). Valerie has had live cell darkfield microscopy done twice now. Both tests showed that she has a yeast overgrowth. The first test (over a month ago) showed evidence of a parasitic infection. Apparantly its the fungus and yeast that are a problem with her. As the yeast dies off in her intestines the tendrils with which the hold on, release. This leaves little hole in the gut. ie..leaky gut!! Large molecules of food get absorbed into the bloodsteam and get attacked by antibodies. That explain the constantly changing food sensitivities! What didn't make her itch last week makes her very itchy this week. (makes mom nuts!!!!!!!!!) The more recent test showed that the parasites are dying off. Her eczema is definitely better. It's gone from a "9 and a half" on a scale of 10" to about a "4" or "5". Much better. Am I dreaming in hoping it will get better? It really scares me to hear some of you who have been suffering for years. I don't want Valerie to be like that... 

My derm recommends using Potassium Permanganate. It is a purplish looking solution. You can purchase it at any pharmacies and you are supposed to dilute it 10x before rubbing it on your skin. It is almost odourless and does not stain your clothing. This substance is an ingredient found in most common solution for treating cuts and wounds. It does not dry my skin but provides a protective layer over it from infection. I apply it after a shower. I dry myself and then rub the solution over my body. I let it air dry or if I am in a hurry, I will just lightly dab dry. You might like to try that. Does not smell (well, only very faintly and then only for a little while). This is not to be swallowed.

Shelley, what you said about how skin feels to touch and on the inside and outside really struck a chord and is a good way to explain how I feel to non-sufferers.

I have no idea what causes my eczema, and finally this year I was down enough to seek specialist advice. For 25 years GPs said to me the eczema should go away with age. I began to think I'd misheard them, because it felt like they were saying I should go away! We have long waiting lists here. Three months after a skin crisis (it comes and goes) I finally got an appointment to see someone. I had been on vacation, and my skin was perfect (lucky me, I know). It took me over an hour to get to the hospital and I was seen for five minutes. Come back for patch testing they said. I have just cancelled my test appointments which were in November. I can't take that much time off work. And I can't see the point of using the conventional health service, which I feel has done nothing for me these 25 years. I really hoped I'd get to ask this specialist a few 'whys'

Why does it come out on my body symmetrically? Why do creams that work at first make it worse after a while? etc... 

I have a message for the mothers or fathers of eczema suffering kids: do keep asking why and what eczema is. I know my mum really tried all she could, but I wish she had taken me for patch testing etc because it's harder to go when you're older! My mum's best idea was to cut my nails short so I couldn't scratch! She used to hide the concoctions she put on me because she thought I'd be horrified if I knew it was goat's milk yoghurt.

Here's a positive memory from my youth. I have very dry eczema. When my friends and I went through puberty, they all got spots, and for once, I had perfect skin! Didn't last, though!

I have also wondered about symmetry to this disease. It's strange, isn't it. I wonder what kind of link there is to the brain that would cause both sides of the body to develop the same shaped skin lesion. Another weird note on health asymmetry--all on the right side of my body I have trouble with my joints--from the jawbone, shoulder, hip, wrist, even one finger, down to my ankle. But not the same problems on the left side. Fortunately none of these joint aches are too serious, just weird.

I think what Nancy said about trying to raise public consciousness of eczema is a great idea. We need some serious medical thought going into this very difficult to live with disease. "It's only your skin"--yeah, it's only the largest organ in the body!

I agree with Brigit's hypothesis. I tried vinegar--it did nothing for me. Baking soda has been a blessing to me for almost a year. And it seems to help my 9 mo. old who also has dry type eczema.

An article that appeared in todays (8/19) New York Times, entitled An Itch Torments Many Japanese, but Relief is Elusive:

" ... Atopic dermatitis occurs in the United States as well, but it receives little attention. "It's kind of a silent epidemic here," said Dr. Jon M. Hanifin, a professor of dermatology at the Oregon Health Sciences University in Portland, one of the leading American experts.

In Japan, some large bookstores carry dozens of books about "atopy," as the condition is called here. Health magazines are filled with reports of cures, and there is even a magazine devoted solely to atopy.

One explanation for why atopic dermatitis might be more visible in Japan is that in the United States, the condition is more or less effectively controlled with topical steroids... "

Wouldn't it be nice if eczema got so much attention in the US as in Japan (imagine a magazine devoted entirely to atopy!).

I still remember my horrifying experience with wounds turning into bad eczema with my little Jodi at about 10 months old. I later realized she actually had a very bad herpes viral attack. After her first herpes attack, I noticed that when she scratched her skin raw, blisters would develop on the same weepy area. Then the weepy spot would deteriorate progressively into bad infections. I was told that her immune system was low and the herpes virus often attack open wounds. I would first use topical antibiotic to stop the herpes infection from spreading and worked on boosting her immune system with baking soda and tea tree oil baths and give her enchinacea extract. Now she doesn't get herpes infection so often anymore.

Can Shelley or anyone advise on how not getting kids immunized and still meeting schooling requirement? Jodi had a MMR(measles, mumps, rubeola) shot last Saturday at the Dr's insistence. I ask him if we can postpone the shot and he says it wouldn't be fair to other kids if she doesn't have the shot. He says though Jodi was a severely allergic baby, the MMR shot would not exacerbate her skin condition. She may develop a fever within the next 5-10 days or may not even react to the vaccine at all. Of course I was not surprised when she developed a fever the same night to 104. The fever continued for 2 days peaking at 105.5. We were almost in the emergency room in the middle of the night. She itched a lot and could not sleep well. She had symptoms of a cold the next day. I gave her enchinacea and baking soda and tea tree oil baths wherever her skin turned red and itchy. Now that the ordeal is almost over, I know I need a new dr for Jodi, a Dr who at least accepts our viewpoint.

Aside from the MMR residual damage, Jodi is doing quite well. Her skin is 98% clear. She is still on a very straight diet mainly no dairy and a few other food groups that are known to trigger allergic reaction. I am still giving her the maintenance dose of anti-parasitic herbal extract once a week except when she has a cold or is not well. I have to admit it's much easier now as the itch-scratch-rash cycle has been broken. Now she can scratch and there is no rash so skin remains intact. But when she doesn't get her toy, or if we cannot give her what she wants, or when her upset scratch turns into tantrum scratch, that's when things get sticky. She would start digging her nails into her skin. My husband or I have to stop everything we're doing to attend to her. Right now all we can do is give in to her to avoid skin damage. I try to tell her what she is doing is not good for her but I don't think she cares about that yet. She would only stop if she gets what she wants. I hope this would improve when she gets older and can accept and understand reasoning. If anyone has any advice, I would appreciate it.

Thanks for the info about the new topical immunosuppressant -- I haven't heard anything about it yet, but I'll be sure to ask my derm about it at the next appt for either me or my son.

Also, Elizabeth, I see you made your decision about working. I remember you writing about your dilemma (to work or not work) and how much you wanted to be home with Isaac. You've taken a big step, one that I can't afford to take right now, unfortunately. I am a working mom and would like to be home more often, but I don't feel guilty like I did before ... Brian is doing better now. I just finished a round a topical steroids and antibiotics. Trying to keep his skin moisturized, baking soda baths, etc. and hoping the eczema does NOT come back as severely.

After yet another sultry and sticky night which is hampering my sleep I have decided to write about dreams. I love em!! Not only can I score the winning goal in a major cup final or be a hero in some amazing adventure, but I have noticed that I never have eczema in my dreams.

Many a time I have woken up and just lie in bed going over my dreams from the previous night and seeing myself as someone without eczema. 

Now, my limited understanding of why dreams exist is to clear the clutter from the brain by sending electrical impulses. I suppose you could call it a spring clean in the memory banks each night. But whilst I recognise people and instances in my dreams WHY doesn't eczema crop up. I also know that you have many dreams in a night and might only remember one or two. So maybe I do dream about eczema but can't or don't want to remember.

I am a big believer in the immense power of the mind over the body, especially the hidden powers of the subconscious. Someone mentioned that if they look at a certain part of the body that has eczema then soon after, that particular area would be itching.

Two years ago I went to see a hynotherapist about my insomnia. Straight away he knew there was something behind my lack of sleep and though I denied this he wouldn't have it until I mentioned my eczema. He then spent two months (once a week) going through my past trying to find links and reasons why my brain triggers my eczema. Some memories were quite painful and some memories from my very early life came back. I eventually stopped, mainly because of the cost. My eczema didn't improve but my personality changed. Before, I wouldn't tell anyone about my eczema. Now I can't shut up about it, even to relative strangers. He did however convince me that he can cure my hayfever. he said that was easy as the brain is mistakenly thinking that pollen/grass etc is harmful. I was very sceptical. He did a routine on me which lasted about five minutes. I have never had hayfever since. Before, I was terrible in the summer months.

He explained that my eczema is being triggered by something that happened in my childhood. Whenever I was in a relaxed state he would also thank my subconscious mind for giving me eczema. The first time I heard this I laughed out loud. He explained further that the subconcious mind exists only for the wellbeing of the body, i.e breathing, temperature control etc. But sometimes it does things that may have helped the body in the past but is now harmful. 

Whenever I am relatively clear of eczema I am very hyperactive and excitable, until my eczema breaks out. Then I slow down until I become very lethargic. This happens to me all the time. My theory is that when I was young I was very hyperactive (my mum confirms this) and my brain, subconciously needed to slow me down, as this was not good for my well being. Maybe it found a way by giving me eczema and has continously done this. It might sound ludicrous to many BUT I have a open mind and can see the logic behind it.

We are still in the primitive times where the human mind is concerned.

Anyway I am going to go back to the hypnotherapist and delve further. He has agreed to halve his costs as he feels he failed me last time. 

Finally, a while someone mentioned about particular events that triggered their eczema. I am quite confident of two instances that started eczema in certain areas of my body.

1. I used to walk around with a walkman all the time. I haven't done this for about five years now because the mini headphones irritated the inside of my ears to the point of eczema. Now the inside of my ears nearly always have eczema. I never had it before.
2. I was always quite pleased that my scalp was clear until one day about eight years ago I had an itch in my hair. I rubbed my head and some horrible looking bug dropped out. I just froze and then ran. I hate bugs with a vengeance. To this day I remember the fright I had and also I have had bad eczema on my scalp ever since.

I would love to hear any comments on the above, even if you think I've lost it!!

I've seen posts from this list regarding "cleaning up your insides" using things like milk thistle, pau d'arco, dandelion. Can someone tell me how they work, and how they are sold (ie. pills, as dried herbs, and how should one prepare them before taking)? Are there side effects or dosing limits that I should be aware of? I have just finished a 10 day prednisone course, which is why I'd like to clean my insides.

To Shelley:

Thanks for posting the letter you wrote after receiving such deplorable treatment from your derms and sharing the article you wrote. It really makes me happy to see someone document these incidents, and do something about them. It is inspiring to others who have suffered the same bad treatment. It has not occurred to me until joining this list that one could speak out against it, because every single derm I've ever seen has been useless and had a horrible attitude (I have probably seen about 8 different derms since childhood).

To Shawn:

You wrote to me regarding my prednisone dosing and what to do about the asshole derm I saw. I appreciate the sentiment behind your letter. Unfortunately, I have a follow up appointment tomorrow with the same guy. I would love to tell him off, but based on his attitude, I know it would disintegrate into a shouting match. I may write a letter once I figure out where it should be sent. BTW, I did CHT two years ago, and my skin cleared beautifully. My mother took me to the herbalist and helped me to prepare the herbs. After a while I even got to like the taste. The only problem was, they were expensive and quite time consuming, and I was using the same dietary restrictions you are now. When I went back to school in september I had to stop, and my skin slowly deteriorated again, but it did work when I stuck to it. (But explain to me how you can go out for dim sum or any chinese restaurant and avoid all those things on the list!) I have thought about doing CHT again, but my chinese isn't that good, and I remember there were a ton of things the herbalist said that I didn't understand.

Shelley,

Your article was beautifully written. I couldn't help but cry after reading it. I didn't have full body eczema until after my first son was born. Before that it was just here and there--but I didn't grow out of it like they said I would. And it was definitely a factor in how I viewed myself when I was growing up. You describe the feelings of a chronic eczema sufferer so well. I've only spent 5 years of 30 in this situation, but the suffering is undeniably difficult. Thanks for taking the time to so eloquently describe your suffering. I'm sure it will help someone to open their eyes.

I used to feel so guilty about wanting to end my life because of my skin--especially since I have a good life, a good husband and great kids. I got over it. I accepted my situation. It wasn't easy. Doctors didn't help. This group does.

Your suggestions about doctors being required to take doctor/patient relations seem so common sense, so necessary. Why haven't they incorporated such a necessary requirement already. I guess that's why we're so frustrated with the medical community.

I also appreciated the letter you wrote to your doctor. Where's the humanity in the medical profession? It really helps to know someone cares.

I've been struggling with the my 6 year old son, since he was 3 months old.After having been to many derms and a few homeopaths I have not found anything that works, other than South African, 'rooibos tea'. I bath him in it every night. It is very soothing on the skin and is apparently a natural antihistimine. Although it has 'cured' some people, I'm nowhere near this with my son. I also tried the baking soda, for the itch. This was disastrous. It dried out the skin and made it much worse. Christine's evaporation technique gave me great hope but I've found this impossible to implement because it stings and gets cold quickly. I've also been giving him 'Epogam' capsules (gammaluneic acid), which certainly keeps him healthy in other respects, but does seem to help the eczema. He is not able to sleep at night as this is the itching time. He is then too exhausted to get up for school. Has anybody had any luck with the 'wet wrap' technique. Wheat products seem to affect him very badly and I have to restrict these. I also find bathing essential for keeping the skin moist. Yet according to many, too much bathing is drying. Other than changing climates, lubricating seems almost impossible. 

Steve, Your posting on the mind-body connection was fascinating. I'm sure there is a connection somewhere, and you have some quite pointed examples of instances when the connection appeared clearly. I have heard that hypnosis & mind-body interventions have been used quite successfully to treat eczema in Japan. There is also a doctor in Massachusetts who specializes in this, I remember reading.

I, too, notice that when my skin is bad, I am usually more lethargic than when it is OK. But when my skin is good, I am energetic but hardly hyperactive. So I have another theory, that it is some kind of metabolic imbalance, such as lack of enough cortisol, that causes both the lethargy and the eczema. (After all, if cortisone is an upper and an anti-inflammatory, then lack of it should do the opposite). Another theory is that bad eczema makes me depressed and therefore I feel like dragging around. If it is on my whole body and painful, it also makes me not want to move very much.

I wonder, is there any one of us who actually feels *better* physically (e.g. more energy) when their eczema is active?

Hi----the tantrum scratch is a tough one. I have not found anything to work for about the last week with Daniel's scratching. I used to be able to take his mind off it by playing or reading or my bribe of Smarties. Now nothing works except letting him scratch and cry it out. Please if anyone has any advice, post, post, post...

Can anyone out there confirm Brigit's assessment that you cannot just go and find out what's in any given concoction? Before considering an analysis of SkinCap, I want to know if we can get access to previous analysis made on SkinCap. Does anyone know who I should contact? Where are they located? and How to contact them?

If previous analysis can not be accessed, I need to know if: Can such an analysis be done? Who could do it? What is involved technically? Where do the find a professional (or lab) that can do the analysis? AND How much will this cost?

Why go through the trial and error process when we have a workable model? All we need to do is to discover the ingredients of SkinCap. Why not explore this possibility first?

Look, we know SkinCap works. We know it contains a steroid. We even know which steroid! We know that SkinCap uses an effective delivery system, possibly something like DMSO... maybe something else. We know that SkinCap addresses bacteria issue with Pyrithione Zinc. We know so much why stop... let's fill in the blanks so we can go forward with your plan of mixing a prescribed steriod (in water form) with an effective delivery system?!

I have asked several doctors and they tell me that in the hands of the right chemistist... a proper analysis could give us the ingredients of SkinCap. All we need to do is to supply them with a sample of SkinCap.

And Howard, I'd hate to see you hurt yourself while you go through a learning curve with your own concoction. Yes, we are the ones who have E and P. Yes, we know much more about what works for us. But let's use scientific expertise to help us... that's very different from sitting around and waiting for them to help us! Let's work together (there is power in togetherness!) in a systematic manner and disect what we know and use the proper tools (i.e. analysis that have been done or professional chemists) to find answers to things we need to know.

Maybe try vinegar since baking soda didn't work. It seems that people with wet, oozing eczema have better luck with this.

Sun helps some people sometimes, sun and saltwater also helps some people sometimes (me included). There are UV-A (PUVA) treatments which require taking a medication which opens up ones body to absorbing the ultraviolet A rays more readily, and UV-B which is a straight treatment with UV-B rays. these are both common treatments administered by the medical profession... I would try B first, since it is less complex-I know there are UV lamps, but I would be a little hesitant to use one because of the burning possibilities. 

Is it true that Cola was bad for a person with AD? Can anybody enlighted me about this & why ?

Yet another downer from me <g>: I also think that labs do analyses for people who pay them to do so. They would not give away the results to anyone other than whoever commissioned the tests (and paid for them).

I'm not a mother myself, so please take the following for what it is, an outsider's viewpoint. And please forgive me if I got it all wrong and misunderstood what you meant.

From what Rita wrote, it seemed to me that they key word here is "tantrum" rather than "scratching". At a certain age (forgot which) many small children discover that the most effective tantrum to throw is the one that does real, serious damage. One of my friend has a little boy who at one point started running his head into the wall or onto the edge of the table, HARD, whenever he was not allowed something. This was frightening! I remember being there when he threw one of those, and there I was, thinking I'd have a little corpse on my hands soon. So I carried him to his room upstairs and told him to do as he please in there, that I couldn't care less, he could come downstairs when he was good company again. Of course he did not know I was within earshot, listening and terrified! Anyhow, after one more BANG there was silence, then another much softer bang, then a long long silence, then I heard him come downstairs (I had just enough time to dash out and pretend I'd been in the garden all along).

His mother later told me that this was exactly what she had tried to do, but it never worked -- perhaps a small child just KNOWS that mummy would not be so cruel as not to care, where they can't be so sure about a relative stranger... 

Anyhow, what I'm trying to say is, perhaps it would be appropriate for you to concentrate on the tantrum aspect of this and forget about the scratching/eczema. Many children have this sort of behaviour; surely there must be something written about it?

My 8 year old son has had severe eczema since birth. We have tried homeopathy (helped initially), chinese herbs (made him ill), followed the advice from unsympathetic GP & supercilious dermatologists. He is now seeing a consultant ped. who specialises in allergies and treats him with sympathy & understanding - we are feeling hopeful!

The 'wet wrap' technique has really helped his skin. I dont know how we would all cope without this treatment - it helps him sleep without resorting to anti-histamines.

Cola makes both of my kids hyperactive aswell - I'm convinced its the artificial additives (colourings, flavourings and preservatives), many of the colourings cause my daughters excema to flair aswell especially the red/yellow ones such as sunset yellow and tartrazine (found in nearly all kids sweets/drinks/ice lollys).

It might be worth you having a look at the Feigold Organisation Web Site (http://feingold.org), for one possible explaination.

I have been using Primrose Oil and my skin is responding nicely. I decided to buy Primrose because Vitamin House had a buy 1 and get 1 free. I bought 5 five bottles and got 5 free. What a deal, eh? I'll be sure to buy Borage Oil the next time around.

Date: 21 Aug 1997 From: Lynn Subject: Skin Cap Analysis/FDA

This morning I called the FDA's consumer drug information line and asked if we could find out any more about what they found in their recent analysis. The representative said everyone was dying to know this (I hope she did not mean literally) and she thought that the FDA was planning to release some further information in a few days. She suggested we call back in a few days. I plan to do so. 

My wife has a very strange case of eczema in her fingers. It's a cycle where the skin starts to dry until it cracks an bleed, then it gets better but about always it is dry. The cycle repeats in about three weeks and goes on. It started six years ago after her first baby. Some doctors say its eczema, other say atopic dermatitis, others say its local psoriasis, others don't know. If she uses to much her hands the condition gets real bad. She has to use gloves for all the housekeeping activities, also when taking a shower. Water in her hands realy dry them up. Does somebody has something similar?

When I have a really bad flare, all I want to do is crawl into bed and not get out till it's over. Of course, this is never possible, but I feel depressed and unenthusiastic about life in general. So yeah, for me, eczema and lethargy go hand in hand. I think it would be hard to find someone who is more active when their eczema is bad. 

I think cola might be bad for eczema because of all the caffeine. As well, all the weird additives, aspartame if it's diet cola, colouring, etc. is probably not great for anyone, let alone sensitive types with e. Also, most cola is made with high fructose corn syrup, so anyone sensitive to corn might not respond well to it. If it's the sweetness and fizz you want in cola, you might try pure grape juice mixed with club soda or carbonated mineral water. This tastes great and is very refreshing. 

Ronnie, Although I have eczema in other areas, I have a similar condition on my hands to your wife but on the palms too. The best thing to do is moisturise as much as possible when they're free from the eczema to try and prevent cracking and infection and she should sleep with lots of moisturizer on her hands and then in white cotton gloves or even those loose clear plastic gloves you can get from the chemist which will help to stop them drying out.

Unfortunately I don't always follow my own advice and end up with cracked hands - but when I do I generally notice the difference and improvement.

I have had eczema for 34 years. Different methods work for short periods of time. Cortisone, (I think I've tried every variety) has the same short term effect. Evaporation works but, application time for my skin is 6-8 hours daily to see any effect. Wrapping my arms and hands at nite with Crisco or Proshield Plus also works for awhile.I only use soap once a week (as e sprouts up everywhere) I eat mainly fruits and veggies, consume no alcohol, and try to live a low-stress life, but still have eczema!

I am currently trying the herb burdock. Has anyone out there had any success with burdock or licorice?

Aghhh!

Just when you think you're making progress... Isaac (2 yrs 3 mos) has been doing great with his skin over the summer, and we've been on easy street, only removing dairy, corn, eggs, peanuts and peas from his diet... Then today I took him in to the doctors because he's been fussy the last two days, and he has a) strep throat, and b) athsma.

This is hitting me hard. While I'm being shown how to use a nebulizer (mists medicine into his lungs) and hearing the finer points of proventil, I'm just so DISAPPOINTED and WORRIED that we're back on another roller coaster, this one even more scary than eczema. The first issue is the strep--if we start the antibiotics, we know his skin will get worse; at least it always has. Then there's the proventil--what will THAT do to him?

So, is there anyone out there dealing with child athsma? What have you learned? What should I read?

Rats rats rats

One can of coke is said to contain 13 teaspoons of sugar. Wow!!!!!! just the thought of that make me hyper.

I have a VERY MILD case of asthma which only flares up when I do intense exercise (like racquetball tournaments and stuff). I have used proventil and other inhalers while still having a very bad case of eczema and no adverse effects happened at all. Each case is unique but my other friend who have both eczema and asthma do not have any problems with their inhalers. Asthma and eczema seemed to go hand in hand unfortunately. Hang in there, I'm still alive!

That's right: if you want to search after a corticosteroid in SkinCap you have to know where to look for. The Inspector of Public Health said that there are about twenty or more varieties of these corticosteroids: if Cheminova was trapped on two of them, it can easely shift to another variety, and to us to find out which one. You have to find extremes in measurements which have to be equal in both the researched SkinCap as the probable corticosteroid.

If Cheminova had patented the stuff it would have admidded they were dealing in an official medicine, to be registred since contending corticosteroids. They strongly deny the excistence of corticosteroids in order to avoid being a medicine.

From the reading I've done, frequent bathing (2x per day) is now the recommended practice prescribed by the "experts" on AD. Before I found this list, when my 9 month old son was first dxd with eczema at 3 months of age, I contacted one of the leading AD derms in the US. I never spoke to him but his secretary sent me a packet with info on how to participate in the inpatient program. Included in the packet were instructions re: bathing. To wit (Copyrighted to Jon Hanifin):

1. Bathing:
• tub bath for severe flaring or for very dry skin. Bathe twice daily for 20 minutes (until fingertips wrinkle), using lukewarm water only. 
• Wet compresses if bathing is painful or for nighttime itch control. 
• Shower acceptable when skin is under good control or when flare is mild.
2. Avoid washcloths, rubbing, scrubbing or overuse of soap.
3. After bathing, dry off only partially by patting with a towel---no rubbing.
4. While some water is still on the skin and within 3 minutes and before leaving the bathroom: 
• apply steroid ointment/cream to red, itchy areas; 
• then apply moisturizer (not lotions) to other areas. 
5. Moisturzing should be repeated as often as necessary to keep skin soft throughout the day. 

Our modifications are as follows: Baking soda bath 2x daily using 1/2 c. Baking soda per bath. (Recently a homeopathic MS we saw recommended using aquarium salt to mimic ocean water). After 20 min soak we apply grapeseed oil to skin quickly (within 3 minutes). If our son has a open, oozing patch we use warm, sea salt compresses to the affected area (I call it the "spa treatment"). This has the effect of drying the wet area and, I think, sanitizing it. If he is truly infected we apply some bag balm to the area. Bathing is always a ritual of ours (and Isaac's) twice a day. At this point he loves the baths (he used to cry) and if he is really itchy during the day, in desperation we know we can always turn to the tub.

We have not tried wet compresses yet as he is most itchy area is his ears and face. Recently I found a book written in 1994 which I have found helpful and has sections on just about everything including wet compresses and Chinese Herbal treatment. Although I haven't read it from cover to cover (do any of the eczema parents get to read out there?) it has a very reassuring section on sleep which begins "For many parents of a child with eczema, nights are pure hell." The book is Eczema in Childhood: The Facts, by David J. Atherton, Published in the UK by Oxford University Press.

I haven't heard anyone mention the use of tar preparations other than as a bath supplement (ie. Balnetar). We noticed no difference with Balnetar baths (and they're expensive). Recently we bought some stuff through the mail recommended by a friend's grandmother. It's called "Adams Tarleine" and the ingredients are Pine Tar, Oxide of Zinc in a Petrolatum base. It's pretty stinky and messy but we think it may be working on a very large patch of red, dry eczema which has affected Isaac's back for over 2 weeks. Anybody had any luck with Tar? Does anyone know if there are known side effects? 

Hi, I'm hoping someone can calm my concerns. Is it possible to overdose on zinc, and if so, what are the signs? I take it orally and also rub it on my eczema. 

I was at a very low point about 2 monthes ago. Valerie's eczema was at its very worst. 80% of her skinny little body was covered with eczema. Her hands were the worst. They were cracked, swollen, scabby, and very itchy. This was preceeded by a visit to a pediatric allergist who really messed things up. He had us convinced that food and eczema were not (not!)related. To make a long story short... for a period of about 3 weeks we took her off her restrictive diet ie... corn, wheat, sugar, salt, yeast. We continued to avoid fixed allergy things like eggs, dairy, nuts, etc... (no choice there since she is potentially anaphylaxic) We were lax about rotating foods as well. He recommended an anti-histamine as well.

Let me tell you, a few weeks of that was all it took to push her over the edge. Her eczema got REAL bad. I found the Kulhay Wellness Centre out of desperation. It is in downtown Toronto. They offer dozens of services, everything from ear candling to Interro food testing. My first appointment for Valerie was for the food testing. On that day, I met Katrina Kulhay who is the founder of the clinic. I will never forget it and it still brings me to tears. Katrina got down on her knees and held Valerie's sick little hands in her own. She told her that she would make her better. I'll never forget it. I cried like a baby. This woman is wonderful. Besides being a caring and knowledgeable healer she is humble enough to admit that she needs to consult peers and research material. In my experiences, thats a rare quality as most doctors think they know everything and don't you dare tell them otherwise. Katina made herself available to answer phone calls and sometimes calls to see how she's doing. 

Jolie... I hated giving Valerie an anti-histamine. It suppresses. I know that people are saying that its what you want an anti-histamine to do, however, the symptoms that are suppressed are just that, symptoms. The problem (whatever it might be) is still there and will find another way ie... asthma. The naturopath I'm seeing at the welllness centre (Mary-Ellen Kelly) seems to be on the right track. Repairing the intestinal tract and supporting the kidney and liver are a part of her treatment plan as well. I'd like to hear more from you and the road you've travelled.

When bathing one sits in ones' own dirty water. If bathing is necessary I believe you must shower afterwards to get the dirty water off of you. I don't bath. Bathing assumes the bathtub is clean. That is quite an assumption. How many of us scrub the bathtub and use bleach and rinse it thoroughly afterwards. A huge job. Perhaps a throwaway bathtub is needed. Showering is much more sanitary. I am against bathing. I think it causes more problems. Nice to play in the tub and all that but ... 

I had a shot of steroids a month ago and I have been clear since. My Dr. says it is only supposed to last a month or two if you are lucky. I keep saying no steroids but he (and another derm I saw) both said "this is acute... you need to break the cycle... "

On this list, the consensus seems to be stay away from steroids... The derm I went told me he has patients come in every 2 months for shots. My question is... What EXACTLY are the side effects of steroids? Could I get a shot only once a year and not have long term effects? (any reccomended literature in this area?)

Also, I am considering Chinese Herbal Therapy. I got the copy of an article from the British Journal of Dermatology (I think that was the name). Anyway, it described a double blind, CHT worked well with all of the patients (who were long term eczema sufferers). Has anyone tried CHT and it did not work for them? I know it is expensive but are there any other drawbacks? Finally, in the article they used a specific blend (they all got the same thing) that is produced by a company named PhytoPharm in England. I would like to get the same stuff they used b/c of the quality control. Does anyone know how to contact them?

Patsy, I am not sure if you can 'overdose' on zinc per se, my understanding of it is that you need to have a balance in your body of both zinc and copper, and that too much of one can lead to a deficiency of the other- I think this is because of the way in which our bodies utilise the two minerals. 

Many of you discuss your eczema in terms of cycles, of going through good or bad periods, etc... My eczema has never 'gone away' other than through the use of Skin Cap. I have gotten many new patches of eczema, but the old ones only get bigger. Does anyone else have eczema that does not seem to go through cycles? Are the cycles a 'natural' part of the disease itself or do they result from various treatments such as prednisone? Is it possible that my eczema does not seem to follow this cyclical pattern because it was adult onset? Any thoughts would be appreciated.

For Caron, who wrote that she had never spoken to another sufferer, and who hasn't really been helped so far via her G.P., and for all other sufferers in Britain, I'd like to make some observations.

1. I think it's well worth joining the National Eczema Society. (Telephone 0171 388 4800) The books in the information pack contain a wealth of up-to-date information, and the quarterly magazine reports on latest findings and people's experiences. There is a network of Local Contacts (I'm becoming one) who can be telephoned just to chat if you feel you need a listening ear, and who may be able to offer useful advice. Anyone can phone, not just members. There is to be a National Eczema Awareness Week in October. The N.E.S. appears to be much more useful than the Association in America, to which some have referred in disparaging terms. I can't overstate how valuable membership has been to me. New members generally receive in the post a pack of samples of emollient products. Of course this is sponsored by the various manufacturers, but it usefully lets you try a variety of products to find what suits, without shelling out a lot of money, as you'd otherwise have to do. 
2. For any with atopic eczema, I cannot too strongly endorse Brigit's recommendation of the book "Atopic Skin Disease, A Manual For Practitioners" Wrightson Biomedical Publishing Ltd. ISBN 1 871816 32 7 Also excellent, tho' I don't know if it is still in print, is "Eczema and Dermatitis. How to Cope With Inflamed Skin." by Prof. Rona McKie. Publisher Martin Dunitz, Ltd. ISBN 0 906348 41 2 
3. My own experience of treatment within Britain's National Health Service has been a very positive one, and I'd like to relate a little about it, perhaps by way of encouragement. This will be highly abbreviated, but I'll be happy to expand if any wish further information. My GP was quick to refer me to the excellent Skin Clinic at the local hospital, when I had skin problems that didn't clear up.(1993/94) I got an appointment through quite quickly, and the consultant was on the atopic track straight away, even tho' I couldn't remember (though subsequently did) having wheezing. It was arranged to go for extensive Patch Tests. Of 63 tested substances, only Nickel showed a result. Meanwhile I also had RAST tests, which showed very high for cat dander, and quite high for house dust mite. The Dr was kind enough to write to me between appointments with these results, as I had explained I was buying a house, and whether I moved in myself or let it out to lodgers might be governed by the results, as we had three cats in my mother's home. All the while, the 'load' on my immune system was great, because of my exposure to the cats, and my skin continued very dry and prone to eczema all over. It was therefore arranged to have UVB therapy, also in the local hospital. This was extremely successful, and gave me a new start. All the time I was on UVB I required no steroid creams at all. Since then, having moved into my own flat and greatly reducing my exposure to cat dander, along with daily use of emollients, I am pretty well controlled. I should mention that towards the end of my time at my mother's I was starting to get wheezing attacks regularly, requiring a Salbutamol inhaler. Since I moved this has ceased entirely. My skin is still dry, but with careful emollient regime using my beloved Aveeno Cream I can more or less completely avoid the need for Steroid cream, and when I use it, I only need the mildest. (Mildison Lipocream, 1% Hydrocortisone) So, for me at any rate Britain's NHS has been a success story. Also, I'd say to those with an atopic tendency, Yes, you may always have atopy, but you need not always have Eczema. 
4. A quick word about UVB therapy. This is ultra violet radiation of 290-310 nanometers wavelength. Electromagnetic radiation (including light) may be thought of also as tiny 'particles', called photons. Blue and sub-blue photons have more energy (are more 'actinic') than red ones. It's the ultra-violet part of sunlight that burns the skin. It is thought however, that UVB sized photons, or wavelengths, are able to do something to cells in the skin called Langherans Cells, which play a role in the inflammatory process. I'm not sure what the latest findings are on this. But I don't think people with E should mess around in an ill-informed way with commercial sunbeds, which don't put out the right size of photon, or wavelength, anyway. They may tan, but they may not moderate the inflammatory process. Hospital UVB machines are extremely powerful, and treatment is carefully monitored.

I am curious, since it has been working pretty well for me, how has the grapeseed oil worked as a moisturizer for Isaac? For me I noticed softer skin and less redness, and diminished itching.

Today I ran into a past co-worker of my husband's. She didn't recognize me. She knew me back when I was having constant flares. I was very flattered that she said I looked prettier than she remembered--she said that's why she didn't recognize me. I finally feel like my skin isn't 10 times redder than everyone else's.

The prescription cream I use for my eczema has 8% tar in it. Because it does have a bit of a smell, I only put it on in the night so the smell would be gone in the morning. It has been working for me more or less over the past 20 years that I have used it. Although, the cream also contains 2% hydrocortisone, I think the tar and hydrocortisone combo have helped kept my eczema relatively under control. I also used the Balnetar bath oil when my eczema got really really bad one winter six years ago. It helped along with the UV treatement. However, it stained the bath tub really bad so I stopped using it when my skin got better. With respect to the side effects of tar, my derm said that there are no side effects. He said that tar has been used for many many decades to treat eczema. I haven't notice any side effects directly related to the tar.

Shelley, your letter to the doctor was very well written, here's hoping it has some effect. Wonder if you will receive the courtesy of a reply?

As for your essay, you write incredibly well, while it was painful to read, it should be of much benefit to others. My heart about broke when I read how you had been restrained as a child and how you were treated while in the hospital. Glad you here on this list. I learn a lot from you.

Just thought I'd pass along my experience with what to me is a new product (first time I'd ever seen it in the pharmacy)... 

It's a 1/2 oz (14 g) tube of "Betadine First Aid Antibiotics + Moisturizer" -- "First aid to help prevent infection in minor cuts, scrapes and burns... "

Remembering recent posts regarding the symbiotic relationship between eczema/skin infections, skin infections/eczema, I figured an antibiotic ointment couldn't hurt, especially since it specifically touts itself as a moisturizer, too... so I figured I'd spring for a tube and try it on my dry, crusty, eczemateous finger which so far has defied being cleared up by other means... 

Well, I've only used it for a day, and am thrilled to report excellent results... following the tube's directions, I only put a very small amount on my finger and rubbed it on/in... it goes on pretty thick and greasy, but I found it gets absorbed within a few minutes... the directions say to reapply 1 to 3 times daily, and yesterday I did it 3 times, 1 time this morning, and already my finger is pretty well cleared up!

CAVEAT -- what is clearing up is the dry, crusty, cracked portions... one small area which has those small, itchy bumps hasn't seemed to be affected, but since I've only used it a day, I can't say for sure that it can't or won't help that type of eczema, too... but I'm thrilled that the 'peeling snakeskin', which as I said, has defied all other treatments, has responded so well to this Betadine ointment.

Okay, I know the question will be asked, so here's the list of ingredients (and notice, NO STEROIDS! <g>):

"EACH GRAM CONTAINS: Polymyxib-B-Sulfate (10,000 IU) and Bacitracin Zinc (500 IU) in a cholesterolized ointment base. Formulated with Aquaphore -- a registered trademark of Beiersdorf AG,"

The package also states:

• Unique non-prescription antibiotic formula plus moisturizer fights infection while helping to heal damaged skin
• Created with a special blend of waxes and oils that protect skin and retain vital moisture needed for healthy skin renewal
• Double antibiotic ingredients... 
• Hypo-allergenic. Free of fragrances and preservatives

For External Use Only. Do not use in the eyes or apply over large areas of the body. In case of deep puncture wounds, animal bites, or serious burns, consult a physician. Stop use and consult a physician if the condition persists or gets worse. Do not use longer than a week unless directed by a physician... 

Basically, sounds like the plain vanilla generic warning.

Interestingly enough, neither the tube nor the package it comes in states who the MANUFACTURER is, only giving the distributors name/ address, which is:

The Purdue Frederick Company Norwalk, CT 06850-3590

I realize that while something may work for one person, it may do nothing for someone else -- but the stuff is relatively inexpensive ($4.49 at my local CVS), and if it ends up not doing anything for your eczema, you at least have an antibiotic on hand you can use for everyday cuts and stuff!

A friend called this morning with an interesting bit of info. She came across a book, printed in 1958, that is a collection of Vermont folk remedies put out by an MD. The recommendation for eczema was corn oil. It suggests rubbing it on (which we already knew) and also taking a tablespoonful orally twice a day -morning and night. The book says it will take a month of this, but the eczema should clear or show considerable improvement. Just thought I'd pass this along. 

Like you, I've had to have a serious course of steroids about once a year for the past three years. For me it's been in the form of prednisone taken orally. The derms always tell me such infrequent usage is alright, but I'm not sure I believe them. Unfortunately, by the time I get the pills, my skin is so bad I can't function, so have no choice but to take them.

As for CHT, I've done it, and it really helped. There were also lots of dietary restrictions that had to be follojust so you know. And also, the herbs are supposed to be prescribed on an individual basis. I think this is more effective than getting some generic formula. As well the prescription changes as time goes on, and according to the herbalist, it will take longer to see results if you've had lots of steroids. I am chinese, but don't understand the language that well. My mother took me to see the chinese herbalist and explained much of what he said to me. If you are going to try this, it would be helpful to find an herbalist who can communicate well in english. The only reason I stopped using this was because I tried it while working in T. for the summer. When I started school again, my mother was no longer around to pay for my appointments and take me to the herbalist. 

Heather, My heart goes out to you! I am sorry your son has had such problems since birth. My son had eczema so bad at 3-4 months he never slept more than 5 minutes and his bed was always bloody. I went from Dr. to Dr. with no success. Homeopathy, ped's, allergists, derms, gp's, you name it. I finally got an appointment with a gastroenterologist that diagnosed him with an immature digestive system or layman's term, leaky gut. Your son may be a candidate. My son is 1 1/2 now and growing, sleeping and eating (albeit a restrictive diet). Diet is our 100% answer. I found that most all of us eczema moms can directly relate our babies' eczema to food intolerances. Perhaps your son is one of those. 

Ronnie, This was discussed several months ago, someone mentioned the chemical sprays used on commercial apples. Ever since taking commercial fruit of all kinds away from my son, his hand eczema cleared quite nicely. Worth a try!

Whilst I try to avoid steroids, I have not seen anything else that seems to cure Eczema well, so I usually slap them on and then once I'm happy with my state I slap on heavy (duck fat I call it) moisturizer and keep that going until my Eczema is so uncomfortable that I feel I need to use the steroids again. It's not perfect, but I see very few alternatives.

I'd be interested in hearing what side effects steroids taken internally do. From what I know they just prematurely age tissue. I get this from knowing that steroid creams age and thin the skin and Hydrocortasone injected into joints (for footballers) degrade the joint. Personally I try to weight it up, Eczema isn't good, but neither are steroids!

It's taken me a good few years to not care what people though too much, I think that's part of the battle for me anyway. Of course the pain and irritation and lack of sleep are a factor too, but I have always seemed to take them in my stride.

I was told once that Eczema went in cycles like like Megan was saying. What I was told was it was a 7 year cycle and I'd get eczema for 7 then bad hayfeaver, but in fact I seem to have lost the Hayfever and just seem to have kept the Eczema and there's no cycle in it.

I'm sure everyone on the list are masters of their condition, in as much as they can feel when I'd coming to be a problem and what situations seem to bring it on. I know for a fact that warm or cold weather really helps my Eczema spread, despite the fact I though sunny weather would help it.

Just about the only time that I was "reasonably" free of eczema was during the start of my last relationship. But since that ended it started a re-emergence, moving house really did my eczema no good too.

What I'd be intested in is if anyone found that there were parts of their bodies that Eczema just didn't go. Reason I ask is that I noticed that when an Eczema attack subsided, it would often them move to another part of my body, and there were some parts of my body that I thought would never get eczema as there are the "Favorites" to get eczema (back of knees, thighs, joints mainly). However that seems to have been proved wrong for me. I never though that Eczema would ever cover my chest, but it has. The only place that I have never had eczema are the soles of my feet and my the palms of my hand (Well just the occasional spot in my palms).

If there are cycles at all then I would say there were cycles in the places Eczema affects due to the weather. Now in the hot weather I have Eczema where clothing is close to the skin and can get dirty/sweaty, so my waist and my neck. Appart from that I feel it's my own stress cycles!

One final point before I bore you too much! I asked my MD about Chineese remedies, as a friend of mine said they work a treat for him. I was told by my MD that they can cause liver damage. I must say that the bloke seemed completely against it anyway as he finalised the conversation with "Well nobody round here goes for Chinese remedies anyway" as if this is some sort of justification. But he did say that there was a study done, and the results said that there was damage but it was not permanent. I must give him credit as he also said that if I did decide then he would support me by giving me blood tests just to check, but I don't think after what he said I will, especially since I feel it's mainly stress related.

I went to a naturopath with great success, he dianosed immediately the problems with my son. However, he wanted me to change his diet so the vitamins and herbs he recommended would heal his leaky gut. As crazy as this sounds, I cannot change his diet yet. He is still on Alimentum formula and I cannot find a replacement. Rice milk is made from brown rice and he can only tolerate basmati white rice. I am going to try to make my own rice milk then proceed with the recommended diet. In the meantime I have visited a practioner who uses some naturopathic methods, iradology, reflexology, cardiopratic, herbal and nutritional. He worked with my son for one hour, my son slept for three hours after the apointment (second nap for the day!). I can't wait to go back but he many many many miles away. He believes in regenerating the damaged intestine that is causing all of his problems.

I finally bought a bottle of grapeseed oil and have begun using it on my skin. So far, the first use hasn't triggered any immediate bad reaction, so that's good. It soaked into my skin quickly and didn't feel too greasy or heavy. I'll let you know how it feels over time.

I didn't realize that it's considered a cooking oil! If it doesn't work on my skin, at least I can use it in the kitchen. Which is more than I can say for all the other useless products that were a complete waste of my money. 

I've been wanting to ask this question for a long long time. Due to the long term use of cortisone creams and long-term scratching, my skin has thinned and lost pigmentation in many areas. The skin on my body is very ugly and because of this, I will not let myself be intimate with any guy that I have a relationship with, for fear of their reaction when they see my eczema skin. This of course means I have had many short relationships and none of the intimate variety. As I would not like to be a nun, can anyone of you who have or have had intimate relationships advise me on how I can get pass that "I don't want anybody to see me in my birthday suit (naked) stage" and on how you explained to your partner that you have full body eczema? As well, can you tell me your partner's reaction when they first saw the eczema and how he/she reacts to it on a day to day basis? I sometimes feel that I am deceiving the person that I am with. From my appearance, no one can tell the extent of my eczema. I have worn clothing that have concealed my eczema all my life. My face is darker than normal but most people assume that I am a sun worshipper and/or just back from Hawaii. (When the eczema on my face acts up, I just tell people I have sensitive skin and allergies.) A few months ago before I joined this list, I felt that the only men that I can be intimate with are the ones that have eczema too. Since I had not met anyone so far with such severe eczema (as mine), I was beginning to feel that there is no hope in me finding someone to share my life with. However, since joining this group and reading that I a lot of you are involved with non-eczema sufferers, this has given me some hope. I just like to thank you for this hope and seek your advice on how I can resolve my relationship problem.

If Betadine ointment works for you, great!

But use any new thing with caution. Watch closely for the development of a senstivity to it. I tried something else with Polymixin B Sulfate and Bacitracin in it and had lots of problems. That doesn't mean you will but it is not uncommon to develop sensivitivies after continual use of anything.

Perhaps you have already tried the Betadine liquid, if not, that is one thing to consider, even though it does not have the above two ingredients. But... check the ingredients of that too, as it might contain soap or detergent which you would want to know about.

I believe dermatologists generally do not use local (creams, ointments) on skin infections. I think the standard is to use shots. I am not positive about that, but that is what I have experienced.

Another excellent treatment for infections is sun.

The folk remedy below corn oil may help some, but so may any oil or lubricant, and the corn is a well known allergen for many people. I think it would be wise to avoid this if one is allergic to foods, and if one is allergic to corn it would be dumb to use it. Sorry for the obvious statement.

I think those Eczematics who have cycles are those who are exposed to allergens which have not been recognized. Each time they get exposed without realizing they have been exposed a new "Cycle" begins.

EXAMPLE: Perhaps one rides a bike and gets exposed to a certain pollen or smoke when riding in a certain place. But maybe that bike route is only followed during a certain season, or time of day, or during good weather.

Example: Perhaps one goes out to eat at a restaurant and one cook uses a certain ingredient in a favorite dish like stew, and the other cooks don't.

It goes on and on.

Detecting allergens may be a very long process. The more unscientific one is during this detective work, the longer one will suffer, unless lady luck blesses us several times.

It is possible to overdose on anything... 

You don't state how much zinc you are taking orally, nor how much of your body you rub zinc on, nor they type of zinc you are applying topically, so it would be hard to say if you are taking enough to warrant a concern regarding possible poisoning, but here's the symptoms (according to Taber's Cyclopedic Medical Dictionary):

ZINC SALTS POISONING: Characterized by metallic taste with prompt burning of mouth, throat, esophogus, and stomach. Violent vomiting, often bloody; increased salivation; painful diarrhea; coma. If patient recovers, nervous complications are frequent... 

Under the "Poisons and Poisonings" table in an appendix, it states basically the above, also mentioning muscular aches as a symptom... and possible ulceration/perforation of the stomach, and/or pulmonary edema... 

Thanks for going to the trouble of finding out possible problems with zinc. None of those mentioned are anything I'm dealing with. I feel better now. 

I've come to realize that with eczema, the old saw of 'one man's medicine is another man's poison' can be all too true... 

But I've found that with this ointment, one needs a very little amount, sparing even... and within one day my skin was noticeably improved, yesterday I only put it on twice... so it seems like something, that for me at least, I only need to use a little amount of, and only need to use a short time... 

But as in your case, ANYONE can have a sensitivity or allergy to anything, even the ingredients in supposedly safe products...

I wonder... are you sure your previous problem was due to polymyxin B sulfate and bacitracin, or perhaps to other elements in the carrier?

The only liquid Betadine I'm aware of is their Iodine concoction... do they have another product?

What attracted me to this ointment is that it touts itself to be a moisturizer, which I can definitely attest to... my skin hasn't been this smooth and soft for months... 

Hi Paulina, your message reaaly struck a chord. I used to worry that any man would think me ugly, and it didn't help that my mother used to warn me that if I didn't improve my skin, no one would ever be interested in me. This is ridiculous of course, since we are all so much more than how we look.

Your eczema is a part of you, and no fault of yours. If someone is really interested in you, they should be able to look past the eczema. If they don't manage to do this, they are clearly not worth your time. Don't waste yourself on someone who will add more stress to your condition by making you feel ugly or unnacceptable. Someone who really loves you will think you beautiful regardless of how you look, and I bet you are beautiful in other ways. I think you should take the plunge, and just explain matter of factly that you have this disease to your partner. You should be able to gauge whether he's a keeper by the reaction you get. Also, you're eczema may not look nearly as bad as you think, and he may not think it is even an issue.

When I first started seeing my boyfriend more than four years ago, I had the most awful eczema on my scalp, but the rest of my body was ok. However, my eczema has been absolutely everywhere on my body, so I knew it would surface somewhere visible eventually. I showed him the skin on my scalp, and I think he was a little disgusted at first, but more than that I think he felt very badly that I had to suffer with it. We were good friends first, and I'd already told him about it then, but had never actually showed it to him. He has never made me feel ugly with it and has helped me to take care of it for as long as I can remember. When things have been really bad, he has taken me to hospital, filled my prescriptions for me, etc. Having a supportive partner can really make each day with eczema a little less daunting.

Don't settle for someone who will make it harder for you. And don't underestimate the men that you see, or have seen. They may be much more open-minded and accepting than you might have guessed, but you have to give it a chance. You have absolutely nothing to lose. If they're insensitive jerks about your eczema, they're losers and not worthy of your time anyway. This is a big part of you that may not go away, so if your partner can't accept it, life together will be pretty hard, won't it? Tell them about it, I don't think you really have a choice.

Best of luck to you, and may you find the man of your dreams!

Paulina, I'd been married for 2 years when my eczema went haywire. I had a little before that. I'm sure I must have told my husband about it sometime, but then it wasn't an issue. However, I can agree with Karen in that someone who's worth keeping will love you no matter what you look like, and will care for you when you are suffering. I think that my 5 years of suffering out of 7 years of marriage have really shown me who my husband is and how much he cares about me. He also never made me feel ugly--despite obvious grotesqueness (sp?) at certain times. He massaged moisturizers into my flaky skin sometimes 3 or 4 times a day. He cooked for me, etc. etc.

The most important thing I hope I can share with you is that a man who cares about you won't be repulsed by your skin. He'll be able to see your beauty despite your outward struggles.

I hope you find someone as kind as I have. Good luck!!

I used to eat muesli (mostly wheat) for breakfast most days. Sometimes I would have Bran Flakes or Weetabix, also wheat. My stomach was constantly gurgling and/or bloated. I changed to porridge and this problem cleared up quickly. As porridge takes longer to make and is a bit too hot for summer I started using wheat-free muesli-type cereals which also had no adverse effects and had the advantage that I no longer felt peckish mid-morning.

I tried Jordan's Original Crunchy but I prefer the ASDA own-brand version ("Raisin, Honey and Almond Crunch"). Tesco do one too and I expect all the other supermarkets do. 

Then there are the shorter-term cycles which arise from the skin processes and reactions themself, such as inflammation --> intense itching --> breaking and oozing --> drying and scaling --> scales coming off --> itching --> etc.

Shelley, Your article and letter were amazing. Thank you so much for sharing them. It was heartwrenching to read about the treatment you received as a child, and how that has affected your whole life. It is hard enough to deal with adult onset eczema when one has had a reasonably "normal" childhood, but you have quite eloquently expressed what it is like to have your whole being defined by a chronic illness. It should be required reading for all health professionals. Bravo and thanks again for your honesty and initiative.

My son Isaac, 2 yrs and 3 mos., has developed asthma. He's had eczema since he was 5 mos. old. Some people theorize that asthma is an extension of eczema (and I don't disagree), and that if you put steroids on eczema, you "repress" it and it turns into asthma. I just want to let people know that we used small amounts of low-level steroids on Isaac's skin for only a month or two, then used NO steroids in the last year, and he has still developed asthma. We also did all the diet manipulation and other machinations that we all talk about on this list... This doesn't disprove the theory, but it does let people know that asthma can still develop, even if not "repressed."

About tantrums and scratching. From watching Isaac develop, it looks to me like kids throw tantrums when they're overwhelmed by their own feelings, including the feeling that they need more attention. I know it's hard to do, but what if we assumed that there is no such thing as "too much attention", at least for a little kid with eczema. This puts an enormous burden on parents and friends, to provide the attention that a kid needs, maybe when there's no more attention to go around, but it at least re-frames the situation away from one in which a kid is acting out "just to get attention". I'd like to erase that phrase from the lexicon, actually... when people need attention, they need attention. They're not bad, they're just needy. We might not have adequate attention to give them, but that doesn't make it wrong to want it, it just means that we're stretched too thin, or too upset ourselves, to give it to them. If we look at it this way, then we can set about to do the things we need to do to FIX the situation (a lack of adequate attention) instead of punishing the needy by NOT giving them the attention they need.

So, that said, it seems like the way to deal with the kid who is scratching as part of a tantrum is to stick with him or her, even if you have to fight to hold on, and NOT let them scratch, but let them have the rageful feelings that are going to come up then. For us, biting is one complication of this--Isaac bites when he's upset, and we've gotten bitten a few times during these tantrums. But we've learned to see him coming, and the bites don't draw blood (they DO hurt, though, and we are trying to teach him that even during tantrums, he can't bite).

I think most of us adults were raised to deel with our feelings on our own (with Shelley's story being a particularly painful example), just as our parents were crawling into their own defenses to deal with THEIR feelings. If we're going to stop this cycle, we need to HELP our kids deal with their feelings (not stop them from feeling them), and show them that we are getting help with our own feelings... 

Paulina: I have extremely ugly skin too and yet I have had plenty of lovers. Nobody seemed as disturbed by my skin as I was. A good person will be more concerned about the suffering that you experience than what your skin looks like.

What I realized is that *I* was the one who needed to work on accepting my skin. *I* was the one who thought it was ugly and disgusting and repulsive. I was projecting the feeling on to the other people, but it was actually ME feeling that way, not them. I get the feeling from your message that you have a similar problem.

What I suggest is for you to take some time learning to appreciate the beauty of your body, alone, when no one is around. Stand naked in front of a mirror, and look for what's beautiful about your body. Tell yourself that you already know what you DON'T like about your body, what your job is NOW is to learn what is attractive about your body. Keep looking until you start to notice the nice things about it. Believe me, there are plenty of them. Keep looking until you find them.

Every lover I have had has told me nice things about my body which I did not believe until I could see it for myself. If you don't believe you are attractive, you will be unable to fully relax when you are naked with someone else, and you will be unable to really enjoy the experience. It took me nearly 20 years to start enjoying sex. I had a number of complicating factors, but one of them was certainly my own feeling of disgust about my body. I still have some difficulty accepting that lovers don't mind my bad skin, but I have learned what they do like about my body, and that makes it easier.

Think about it. When you find someone attractive, there's things that you might not think are great, but you like other things, and that's what's more important to you, right? It's the same for you. The good compensates for the bad. Everybody has something about their body that they don't like, and you should try to talk to any lover you have about their own feelings of physical imperfection. You said that you assumed you'd have to find someone else with eczema, but actually people with lots of other conditions can be understanding too. In my experience, being matter-of-fact about the whole thing is the best approach. "Yeah, I have this horrible skin problem. It's awful, but I manage to live with it."

If you are concerned about revealing your skin all at once, do it bit by bit. That would actually be sexy. Show your arms one day. Then another day your legs, or your back, etc. Gauge the reaction. If the person isn't appropriately sensitive and curious to see more, then don't continue seeing that person.

The important thing is that it's going to take a long time for you to feel OK about yourself. In fact, it's a neverending struggle. Start now by looking into that mirror and pretending you're someone else. That someone else finds you attractive, to your amazement. What could it be that they find attractive? Keep looking until you figure it out... 

Sue, You have been listening to 'alternative' practitioners. There may well be a lot of truth to this 'theory' BUT lots of people have asthma, then develop e, or not develop e at all.

I have asthma, hayfever and eczema. With me it was hayfever first with a few patches of eczema as a child. As I understand it these are all symptoms of an 'atopic' individual, which is a tendency to these excessive, mainly allergic, reactions. I also get an allergic skin reaction to the sun.

I am lucky in that none of these three is excessively bad (unlucky probably to have these tendencies at all!), perhaps because it is all spread out. I am not sure how much you should be worrying about 'suppressing' these symptoms, perhaps if you look at taking an antihistimine, for example, as soothing an overreaction? Although I am one hundred percent in support of using steroids as little as possible.

Anyway what I really wanted to say was not to feel responsible for your son now developing asthma - he is 'atopic' and his immune system overreacts to non-harmful agents.

Good luck with your alternative practitioner, but, bear in mind they do have a habit of trying to make people feel that it is some intrinsic personality fault that causes a disease, which causes a lot of stress to the patient!

Apropos my last mail, and something I asked a while ago, but heard nothing. Does anybody know of any definite research - is it dangerous to take antihistimines for a long period of time?

Do they suppress the symptoms, like steroids, causing further long term damage? Or do they neutralise the more harmful effects of excessive histimine?

As I have written before I have found Zirtek a bit of a mini-miracle this summer; with a lot less sneezing, clear eyes, a relaxed easy-breathing chest, no sun-rash and best of all a lot less itching and redness on the eczema on my face, in fact it is hardly noticeable to others right now.

I am going to ask my GP if it is advisable to use it for eczema, as my hayfever will soon be disappearing and I am afraid of a return to last winter's nightmare face when I stop taking this antihistimine.

But I don't really trust his opinion as he thinks the eczema on my face is caused by dry skin which I am totally sure is absolutely wrong!

PS I just found out that some horrible neighbourhood kid has been saying to my children 'Your Mum's got a scabby face'. That hurt me so badly, for myself and for them. I'm an adult and can't really cope with that sort of abuse, so imagine how truly terrible it must be for a child with eczema.

Paulina, I understand how you feel and my heart and prayers go out to you. I have full body eczema and have experienced some of what you are going through.

Regardless of what disease or affliction a person has we are all worthy people. Worthy of love and having a relationship. At the time I married my wife I was having a fullblown attack from head to toe. This went on for 3 years. We went from dr to dr and even into a hospital. I am doing better now but thanks God my wife stuck by me. We would go a month or so without being intimate cuz of my eczema. It has been rough but she saw past the eczema to who I really am. I am not my eczema, although at times it seems I am. There is much more to you than your eczema. You are a worthy human being capable of giving and of being loved.

There were times I hated myself for how I looked but my wife never stopped loving me. There are people out there there are capable of loving you regardless of how you perceive yourself or what your skin looks like. You need to give people the chance.

The good news is that at least one of us - me - is temporarily free of his nagging eczema, which in the last 2 years (and never before) has been active from toes to neck, including palms of hands. The only thing I can find that I do differently than others is my daily intake of Lecithin, 1200 mg capsules (they're huge) 2x a day. I do this on the recommendation of a friend who claims this is how she got rid of her psoriasis. Actually, I can't believe that just an extract from soy beans can be that effective, but I'm enjoying it while I can. Will report back if and when it comes back.

Thank you Karen, Sage, Shelley, John & Nelson for your advice and your encouragement. Your words and advice mean a lot to me.

I think in order for me to allow myself to become intimate with someone, I really needed to hear that there are people out there that will care for someone no matter how ugly one's skin will look at times. I am really happy for those of you who are lucky enough to find one of those people.

Shelley, I think you hit it right on the spot. I do find my skin really disgusting at times and I know that I will have to learn to feel comfortable with it. As well, I would just like to say that the article that you posted last week really touched me. It made me sad to think that you had to endure all that torture. I applaud you for having the strength to live through that nightmare and the courage to share your insights with those who care for or might care for a child suffering from eczema.

I've finally plucked up the courage to use the grapeseed oil. I was worried that with all the hot weather we've been having recently I'd start smelling like chip fat - but luckily not!!

Anyway although it takes me a bit longer to get ready in the morning as I have to wait a few minutes longer for it to soak in better I have to admit that it's worth it. It doesn't actually get rid of the eczema as such but it's a lot more soothing and lighter feeling than many emollients I've tried. Basically my skin feels soft and moisturised rather than loaded with heavy creams - it's almost as if it works with the skin's natural oils. I had a bad reaction to some perfume - which I only wear (naughtily!!) on rare occasions anyway - and was spreading Efcortelan 1% on it which made it itchier etc so I thought I'd try the grapeseed oil and it's soothed it, preventing me from making it worse by scratching which can only be a positive thing for an eczema sufferer.

It's only been a few days though so I'll see what the effect is like in a few weeks. Also as Shelley said, if it doesn't work, you can always cook with it... !!

My 3-year-old was officially diagnosed with asthma this summer, although I suspected it for 2 years. I really doubt that using or not using steroid creams on the skin has had anything to do with her developing asthma. Fortunately, it's well controlled with the Cromolyn nebulizer treatments.

I also know a few kids with asthma but no eczema.

As for tantrums, almost every toddler/preschooler I know has thrown a tantrum at one time or another, and my daughter is the only one in the group who has eczema, so I have a hard time believing that eczema in and of itself has anything to do with tantrums other than the fact that it might make a child more irritable than normal.

After hearing of positive results for so many you , I've decided to take Naren to a gastroenterologist( just covering all bases). Would really appreciate it if people who've done this could tell me what questions to ask and what their docs suggested so I can make best use possible of the visit . My appt is in 2 days so would really appreciate hearing from you before then. By the way, in a phone conversation with the doc he says "leaky gut syndrome" is a very vague term . Can anyone tell me a source for further info on this subject?

I tried lecithin in liquid form for a while, applied right to my skin from the bottle. I'm not sure how well it worked. It was awfully sticky. Capsules sounds like a better way to go. I'll have to get some of those. I think the bottle of lecithin that I have has probably gone bad or something, it's been so long.

I enjoyed reading Suzannah's balanced reply to Sue's equally reasonable mailing, respecting athsma/eczema and notions of "suppressing". It prompts me to send some musings that've been running round my head for a while. I'm thinking about people's perceptions, what mental, or even subconscious 'model' people have of a condition like eczema. The word eczema means 'to boil out', and there has been a view, and probably still is in some alternative therapies, that something is coming 'out of the system', that it's this working-outward process, expressed on the skin, that causes inflammation, that if the 'something' could be expressed outwards fully, it would be out of the system, and the skin would heal, leaving a healthier person inside.

I think it is based on this model that some envisage anything which prevents the skin inflaming as being 'suppressive', as driving an undesirable 'something' back 'inside'. I use inverted commas a lot here, as I'm not too convinced of the validity of this model. Is it in fact true? Certainly I don't believe for a minute that serious inflammation can be allowed to progress unchecked. I don't see that as a healing process, because it's likely to lead to secondary bacterial infection of the skin, which if untreated, could result in septicaemia and death! 

It seems an easier and more sensible model (which I believe is supported by all current research) to accept that due to subtle (probably congenital) not-yet-understood abnormalities of the immune system, certain persons are prone to the sensitivities/allergies that cause what we call atopy. It seems reasonable to me to accept that we may always have the atopic tendency, but with good awareness and appropriate steps, we might if fortunate not always have symptoms.

Related to this is how we perceive steroid therapy. Should we see steroids as a terrible enemy to be avoided at all costs, or as a potential friend, but a powerful one and with strict limitations? I concur in distaste for the idea in certain 'alternative' therapies that if a patient isn't completely cured, it's their own fault, because of some failing in applying diet or treatment. This is adding guilt to suffering. (But the practitioner still takes the money.) Not that I am unaware of the failings of 'orthodox' medicine. Shelley's article was moving indeed, in this regard. 

All the FDA info regarding Skin Cap said not to stop using it suddenly (specifically for those with psoriasis-they warned that this might aggravate the condition). My question is should I taper my use of it gradually rather than just using it until it runs out? What would happen if I did stop using it suddenly? Does this warning apply to E as well as P? 

I don't know if it's still there, but try http://members.aol.com/docdarren/med/candida.html

Jolie, If you are willing to go through the trouble of making your own rice milk, the following info may be of use to you. I make a concoction for Valerie as well. She is almost 3, and since I don't know how old your little boy is I'll asume that their nutritional needs are similar. 

Sunflower seeds have a near-complete protein content, plus vitamins and minerals. Pumpkin seeds contain nutrients such as phosphorus, iron, calcium, and vitamin A. Sesame seeds are richly abundant in calcium, and also contain potassium, phosphorus and vitamin E. These drinks can be made with nuts as well. 

I grind up the seeds and to them I add: 1 tbls lecithin granules, honey, and boiled water. Blend and strain. When cooled, I also add 1/4 tsp evening primrose oil (hard to find the bottled variety and VERY expensive. Breaking open capules works as well, although time consuming.) I also add a tbls of hemp oil (Valerie no longer tolerates flax). Other things can be added to enhance the flavour and/or fortify its nutritional content. For example, bee polen granules, carob powder, fruit (such as banana), dried apples (unsulfered variety!), slippery elm powder, molasses, vanilla, etc... I keep my concoctions simple since she's allergic to so many things, but on occasion I do get fancy. Tastes pretty good.

In case your interested I got the info and recipes from a book called: Not Milk... NUT MILKS by Candia Lea Cole - Woodbridge press Santa Barbara, California 93160

Megan, I believe the reason for tapering is the fact that, when you use external steroids, your own adrenal system supresses its natural cortisol production, and if you quit suddenly, your system would be depleted for a while, and not be able to immediately compensate. This could cause an aggravation of the inflammatory process, as well as leave your immune system vulnerable, until your adrenals came back on line. When you taper off, your system comes back proportionately as it senses a drop in the external input, so that by the time you quit, it is almost back to normal.

Of course, all this depends on how much steroid you have been using, for how long, and whether it was enough to supress your own system. With SkinCap, who knows whether it is similar to other topicals or whether it has its own dynamic? I don't think the FDA knows anything special about SkinCap either, they are just applying the logic of other steroid use.

Thank you all for your advice on breakfasts. I'm not feeling so bloated as I am following a combination of advice given to me. It seems that rotating what I eat is helping (Michael suggested that) and eating a less heavy cereal (David, I've found that Sainsbury's do their own brand of crunchy cereal which is a lot tastier than that dreaded All Bran!!). It doesn't seem to be the milk that's the problem but I'm trying to be frugal with my measures.

I re-read what I wrote to the list in June and really, I can't think of much to add to that, other than:

1. If you've decided for whatever reason that you're dead against (topical) steroids, then this book is NOT for you. 
2. Also, without a sympathetic dermatologist who's willing to get the book and study it and refer to the professional articles the authors have published, there is no way you can follow the programme. You need a dermatologist to do it. (I'm sure the authors would welcome inquiries from colleagues.)

I have suffered from eczema on the thumbs, index and middle finger for the last 6-8 months. It just keeps cracking and peeling layers of skin. I seem to get a callous like top on the skin before it peels away.

I have tried Johoba oil at night, gloves do not seem to help. The Dr. gave me flucindine ( spelling?) ointment in June. FOr two weeks I was clear and then it happend again and this time will not go away. I use Petroleum jelly hand cream during the day to keep them moist. When I awake in the morning I thinkg oh good it isbetter today. Then about a hour later it starts todry and peel.

I have tried eliminating foods (not been checked for allergy yet) and that doesn't seem to work. I recently read on the list od a staph infection called ataph.aureus, I am wondering if this could be staph infection?

Does anyone else have this? People I have met say it is strange to only have it on my hands.

Dear Penelope, My eczema first appeared on my hands. Very seldom does it reappear there now. Here's what I did. My doc gave me a prescription for Diprolene AF, an apparently truly strong steroid. I put a thin coating on at bedtime, then wore white cotton socks (don't have gloves) on my hands. It took about 3 or 4 weeks of this nighty regimen but it completely cleared. Don't know if this will work for you or anybody else, but it took care of my finger and hand eczema. 

I have had eczema for since I was 14. Recently I have been very distressed over the fact that it seems to be spreading and I have no way of stopping it. It has become infected and I am now on antibiotics. Can anyone give me a suggestion as to what I can use to stop the itching? I am currently head to toe in bandaids hoping that this will help, but I know there is a better way!

I am constantly battling infection and the itching has become unbearable. It is really causing me to be very depressed. I have dark spots anywhere that I have eczema and it causes me to be very self concious. Is there anything anyone can suggest that will take the itching and/or spotting away. Or even to keep it under control? I have heard that acupuncture helps and I am considering it. Is this a helpful treatment?

[Research using "scratching machines" has shown that healthy skin can be made eczematous.]

Re-reading this comment I just thought--NO WAY. Does this mean that my eczema is a result of scratching. Most certainly not, I'm sure everyone would agree. But what was this research? Did the subjects develop all over body itch, dry, red, flaking skin? Or were there merely some sores caused by breaking up the skin with these itching machines?

Sorry to be so cynical, but this research sounds inconclusive to me.

I presently have my itching under some control as well as my eczema, but I think too much emphasis is placed on the itch-scratch cycle. Maybe I'm wrong. I guess it's just that when I scratch those itches, I want to believe I'm not hurting myself. I do keep my fingernails short, short, short.

Maybe it would help me if I could see more research on scratching and eczema. Or maybe I should just shut up and accept the fact that I shouldn't scratch!!!

Gee, I think it's wonderful they've created a 'scratching machine'... where could I order one???

Lynn asked about the Atopic Skin Disease book, and Patsy sensibly suggested requesting it at the local library. The 'blurb' on the back of the book says:

"This practical manual describes a novel, highly effective strategy for the treatment of atopic skin disease in adults and children. The proven method combines the effective use of conventional topical treatment with the elimination of self-damaging behaviour using habit reversal techniques.

"Every sufferer recognises the vicious circle of partial skin healing followed by relapse which characterises the debilitating and demoralising experience of chronic atopic eczema. Until now patients have had to learn to live with their eczema, but the combined treatment approach described here enables them to take control and, for the first time, to _live without eczema_.

"The book opens with a clear illustrated introduction to atopic skin disease and conventional therapies, and goes on to outline methods for behaviour modification. The remaining chapters and the Appendices provide everything the practitioner needs in order to apply these techniques in adults and children.

"The programme described in this attractive volume can be mastered with ease by doctors and nurses and may be applied in primary or secondary health care settings - it is cost-effective and rewarding."

The Preface reads:

"In the summer of 1989 at the International Congress on Dermatology and Psychiatry in Leeds, UK, Richard Staughton introduced Peter Noren to Christopher Bridgett. This led to a fruitful discussion of the work done by Peter Noren and his colleagues at the University Hospital in Uppsala, Sweden, where they had introduced habit reversal to the management of atopic skin disease in 1984. Our subsequent collaboration led to the introduction of 'The Combined Approach' for atopic eczema at the Daniel Turner Clinic, Westminster Hospital, London, in the autumn of 1989. As we gained experience and gathered further clinical data, we were able to report on our work at the Congress on Dermatology and Psychiatry in Florence in 1991 and in Amsterdam in 1995.

"Success with patients has led to pressure to promulgate the technique. The handbook for patients has been developed into a training video for professionals. Now this manual allows the method to be mastered with ease by appropriately trained health service practitioners, both doctors and nurses, working in primary and secondary health care settings. The Combined Approach is highly effective, and can radically improve the quality of life of the majority of patients with long-term atopic skin disease.

"In our work we have learnt a great deal by listening to our patients. We wish to acknowledge their contribution to this volume, and to express our gratitude to Christina Funnel and her colleagues at the National Eczema Society, London, for all the help and encouragement they have given us." Christopher Bridgett, Peter Noren and Richard Staughton, July 1996.

[Research using "scratching machines" has shown that healthy skin can be made eczematous.]

I think there is a lot to this statement (above). But there is more than only this involved. Scratching causes most of the damage, but it is a result of itching usually. So if the itching is controlled there will be less scratching. Catch 22?

>>have you personally tried any of the recommendations and, if so, how are they working?<<

I tried, but ran up against the limitation that I needed prescription steroids that I did not have; also, the programme is one of co-operation between doctor and patient. My current dermatologist is not interested, as he is of the stress school of thought and refuses to believe that I love my work, am very happy with my house, am very happily married and have no financial worries; and that the one and only stress factor in my life is the eczema itself!

I'm one of the people who finds very HOT water is the only thing that helps... cool/cold water, if it gives any relief, only lasts a few minutes... 

Any activity such as hiking during the heat/humidity of summer aggravates my eczema... 

Your dr. is correct in saying leaky gut is vague. First, doctors do not understand leaky gut and yes, it can mean different problems. In my son's case he has a faulty valve between his small and large intestines, thus the leaking. In a friend's case who also has leaky gut is plagued with parasites which have leached her stomach lining thus the leaking gut. In both our cases after the gastro we have gone alternative and are seeking further advice from non-MD's. It is a great place to start. 

Very hot water is almost universally acclaimed as being harmful for eczematics. It thoroughly removes all skin oil and causes itching because of the drying effect on the skin. Dry skin is itchy skin. 

Oil does not moisturize skin, water does... the only thing oil does is form a barrier to hinder the water in one's skin molecules from evaporating... 

Be that as it may, I do NOT find hot water any more drying than cold water... but that's just me, I don't claim it can work for everybody... 

Although Valerie's eczema has improved tremendously we still have flare-ups. Actually, we are having one now. A couple of days ago I experimented, giving her sesame hoping that she would be o.k. with it. Sesame is a great source of calcium. Lesson learned...

The specific diet Vidya asks about doesn't really exist for us. I try to keep a varied diet with the focus being on avoiding offending foods. As you know this is really hard to do when your child can have a certain food one week and suddenly be sensitive to it the following week. I find that Interro food testing helps me deal with this. We have her retested every month. 

Leaky gut sydrome... My naturopath is addressing this in several ways. Many of you have made the connection of poor digestion and eczema. In particular, low production of hydrochloric acid in the stomach. For this Valerie gets Gentian Root before each meal to help stimulate the production of acid. To help repair the intestinal tract lining, she gets Ultra Flora Plus which is lactobacillus acidophilus (no dairy). It is a heathly bacterium that exists in all our stomachs but is apparently lacking in hers. She is also on several other supplements. 

Don't give up on alternative medicine if the doctor you chose isn't able to help you right off the bat. In my experience, I had to try several different doctors before I found the one who was able to help. I almost gave up on the idea many times. I went back to cortizones and anti-histamines: it was like jumping from the pan into the fire. 

OK, I finally did it. I bought Skin Cap. Guess what? It works!!! At this point, I don't care WHAT'S in it - for the first time in over 4 years, I've slept through the night for the past four nights. I don't know how it works or if there are steroids, but I have to believe there are none. Kidding myself? Maybe, but after watching a Dateline story about the agony of poison ivy all I could do was laugh - then cry. 

A Danish book I have on Dermatological therapy and children says:

"Parents should appy a moisturizer as often as possible during the day, even every hour or two especially to the infant's hands and face. Pure grease ointents such as Vaseline, Neutrogena Dermatologiacal Cream, and Crisco cooking oil are good for babies with dry skin in a dry climate. These preparations have few additives and are unlikely to case an irritant effect. In humid weather we sufggest lighter creams such as Eucerin, Lubriderm, Auquaphone and Albolene. Due to the large quantities used, the moisturizer chould be inexpensive and easy to appy (such as from a pump dispenser)."

Personally, we were recommended "Hydrated Petrolatum" available over the counter but from the pharmacist--it costs only $5.00 for a pound tub. I found an empty shampoo pump dispenser which fit perfectly over the top of the container. However, we have abandoned the HP and other thick emollients recently, and for the past couple of months have been using grapeseed oil with equal or better success.

Recently someone asked about possible side effects from the chronic use of antihistamines. I don't recall a response. I'd also like to know if anyone kows about this. We've been using either Zirtec or Phenergan with our 10 month old, Isaac, pretty consistently because he itches so badly at night and awakens nearly every hour or two. But I feel terrible about this and want to stop. Can anybody share their experience/knowledge re: antihistamines and babies?

I don't know about "side effects" of chronic usage of antihistamines but I do know this: After quite a while the effectiveness will usually become less and less causing you to take greater and greater amounts. Also, I have experienced some dryness of my throat but not enough to warrant concern or even bother me.

I am now trying to taper my Zyrtec usage not b/c of side effects but b/c I want it to work as well as it did before. So far my plan seems to be in sync. I take it every other day instead of blindly taking it everyday. The immediate effects are now back to the same as when I first starting taking it. No, I do not have and "scientific evidence" to back this up, just my experience.

Rice milk contains no soy, it's even fortified with calcium and Vit A & D. I recommend the plain as opposed to the vanilla. Personally, I think it's easier to forget that it's not cow's milk. 

As I understand it antihistamines can be "gotten used to" by the body. If you use one kind for a long period of time they become less effective (even though you might not notice it). My allergist usually alternates me between Zyrtec and Trinalin, with Zyrtec on hand if I NEED it when I'm on Trinalin. I don't know if this is common or not... 

When I took an antihistamine (Chor-Trimeton) regularly it had the effect of drying out my lungs so that the congestion would not flow out during coughing. This made my asthma worse. Chor-Trimeton also had the effect of causing me to feel cold. I noticed this when I took it while in flight when the plane got cool at maximum altitude. I had to bundle up with several blankets while most others needed one and then I still felt cold. When I didn't use Chor-Trimeton then I was not cold. I don't know how much this is related to other antihistames, but I would ask your doctor.

I still take Chor-Trimeton occasionally when I am itchy but only once a day at around 4-5 pm when I want to be drowsy at bedtime . The new antihistamines are supposed to have much fewer problems with side effects but I would check anyway as babies, as you well know, are so sensitive.

I have been using Aquafor on my daughter (2.5 years old) for months, and it has worked pretty well, although awfully expensive. Recently, I bought a (slightly) less expensive massage oil. It is lavender and calendula oil in a base of olive oil. I have been using this on her right arm and leg while continuing the Aquafor on the rest of her body. After about two weeks, I can't tell any difference. Anyone else done this? Would it be just as effective (albeit not so sweet smelling) to use pure olive oil?

I use Phenergan for my baby too but only when his skin is really bad. So far he is "fine" but I heard that giving baby antihistamines is a bad idea as he/she maybe so sleepy that normal "defensive" reflexs are weakened - e.g. sleep on the wrong side and covered by a toy - "normal" reflex would tell him to move/turn over to avoid suffocation.

Copyright of the individual messages rests with those who posted them. This Archive was edited and coded for on-line publication on the Web by Byte Ryte bv.