February 1996 Eczema Mailing List Archive
This file contains most of the traffic on the Eczema Mailing List during
February 1996. Please note that the Archive has been edited for accessibility
as well as the protection of contributors' privacy. The full flavour of
the Mailing List can be experienced only by subscribing.
Date: Wed, 31 Jan 1996 16:25:51 -0500 From: Jack Subject: Re: Child
with eczema
My daughter Nadia has had AD since 18 mos. She's allergic to dust mites
and of course cat and rabbit fur. We've been to most of the dermatologists
in local practice, as well as a homeopathic clinic. I think the homeopathic
stuff may have strengthened Nadia's immune system, because after the regimine
was complete she almost never had staph infections. She still suffers almost
constant itching, flaking, thin skin and naturally the scratches she inflicts
on herself.
It would be great to have Lyncoln e-mail Nadia directly, so they can
kid-talk about their experiences.
Date: Thu, 1 Feb 1996 00:39:04 -0500 From: Shelley Subject: Re: Food
Richard: I am extremely allergic to nuts and seeds, and avoid or reduce
intake of caffeine, sugar, salt, citrus, and dairy products to keep my
condition under control. Water seems to be GOOD for me, on the other hand.
Unfortunately, there seem to be more things that have a negative effect
than there are things that have a positive effect.
Date: Thu, 1 Feb 1996 12:51:08 -0500 From: Shelley Subject: Re: molluscum
Gil, the molluscum info is fascinating. I was never told it was contagious.
Shouldn't the doctors have mentioned that? And makes me wonder how I got
it. I only get them on my face. Mostly on my eyelids, but I did have one
on my cheek. How long is the incubation period? You say they're supposed
to just curl up and die by themselves, but mine never did. I had my first
two for nearly a year before removing them. The dermatologist said they
were harmless and need only be removed for cosmetic reasons. I tried to
live with them but eventually decided I couldn't stand looking at them
anymore. I went to an eye doctor for the surgery since my dermatologist
said he didn't feel comfortable working in the delicate area of the eye.
The eye doctor is the one who told me it was a virus and if not removed
could cause blindness. Since then I get them removed within 6 months, but
they've never gone away by themselves.
Date: Thu, 1 Feb 1996 17:01:28 -0600 From: Kristen Subject: Re: What
about food?
I tried drops under the tongue along with a diet that excluded all dairy,
and anything with gluten! It nearly killed me--a whole year of the most
boring foods imaginable. I got all the gluten-free cookbooks and made my
own rice bread, etc. It was fine the first time eaten just out of the oven.
After that, it was like eating plain grain; it would all crumble and fall
apart in your hands. It was quite expensive eating that kind of diet. And
I am an avid bread and ice cream fan! I lost a lot of weight. Finally,
I just got tired of it. When I went back to milk, I could no longer tolerate
it at all--milk now makes so miserable I can only tolerate minute amounts
periodically. I used to like cereal, but that's impractical. I skip breakfast
entirely now becuz there's just not much to bother with anymore. Most meat
makes be gag if I have to fix my own, so I stick with veggie casseroles
and vegburgers, things like that. Veg pizza is a big favorite--no grease.
I feel like Ingrid Bergman, who when she was told she had lung cancer,
kept right on smoking to the end! You only live once!
Date: Thu, 1 Feb 1996 16:52:20 -0600 From: Kristen Subject: Re: Massage
and Telangiectasia
Shelley, I suspect any one who has used cortisone religiously will end
up with telangiectasia, but they may not if they do faithful derm follow
ups. I know mine is the result of overuse of steroids that were much too
strong for too long a period, like 10 yrs. All the male derm's I saw insisted
I had acne; it was only a woman derm dr who knew immediately what was wrong
with me! I chalk it up to arrogance and failure to listen on their part.
Maybe ignorance, too.
That is a novel idea--it never occurred to me to consider a dry massage.
Is it strictly hands on with nothing to lubricate? For how much time can
you tolerate it?
Date: Thu, 1 Feb 1996 23:11:21 EST From: Gilbert Subject: Re: molluscum
Hi, Shelley. Yes, with some folk the so-called "benign" molluscum can
be problematic. Blepharitis (i.e., inflammation of the eyelids) and conjunctivitis
can sometimes be associated with molluscum. I say "associated" because
oftentimes there are several things at play here. For example, if a contact
dermatitis arises due to, say, allergies caused by agents like eye drops
or cosmetics, the irritation can provide a seeding bed for molluscum or,
for that matter, for any pathogenic contaminant. And, though we usually
don't realize it, our hands are all over our faces. Hands (esp. fingers)
can carry bacteria and viruses better than any inanimate fomite I know
of. Of course, I'm not saying that hands are the culprit, but whenever
I think of routes by which skin infections get launched, I always think:
hands. So, I would wonder about contact allergies. At least, I would not
want to forget them.
More to the point, molluscum with its little elevated lid-margin tumors
has a "tendency" with some people to "set up house." When so, it's probably
because there (is/was) a follicular conjunctivitis that's claimed squatter's
rights and become chronic -- and sometimes secretively so. If this is the
case, it seems to be due to the toxic effect of viral particles (i.e.,
incomplete virions) that have gotten shed. Then there's something of a
vicious cycle with "reoccurrences" of the "same." And, sure enough, when
these forces are at play, the bug doesn't just whither away.
Like you, I don't know why physicians tend to be poor communicators.
I think your dermatologist, however, communicated well in referring you
on to an eye specialist. Any phenomenon around the eye is "hands off" for
nonspecialists to my way of thinking. I'm sorry you've had repeated bouts
with our (usually) "benign" and "lazy" virus. And, even here, the degree
of the problem is, as we see, quite dependant on the individual who presents
with the problem. Just because molluscum is not the "big" issue of herpes
viruses popping up in the periorbital region, does not for a moment say
that it cannot or must not be a problem. Perhaps a number of medical people
don't really appreciate that; maybe they're accustomed to needing a staph
explosion or a herpetic crisis to warrant "medical advice." Communication
is a critical event in the history of successful treatments.
Actually, the sort of issue you've brought up here, is one of the things
that interests me about the topic of eczema. I'm concerned with infection.
Eczema itself is not an infection. Eczema, however, in the context of its
effect, can be a cause for infection insofar as its lesions can lead to
a violation of skin integrity, whether that violation is primary or secondary.
At that point, we have an issue that needs to be and, probably, can be
addressed. Hence, doctors, nurses, the role of the fields of medicine.
Hence, communication. This forum, too, is a module for communication and
brings its own eye witnesses.
Date: Fri, 2 Feb 1996 07:55:20 -0500 From: Ralph Subject: Re: What
about food?
>> It nearly killed me--a whole year of the most boring foods imaginable.
<<
Wow, a year. I'm impressed. But did it help your eczema?
>> I lost a lot of weight. <<
Did you later gain some back? I would actually like to lose weight.
>> I skip breakfast entirely now becuz there's just not much to bother
with anymore. <<
I've heard that one should really eat breakfast, even if trying to control
food intake. But I don't know if it is necessarily true.
>> Most meat makes be gag if I have to fix my own, so I stick with veggie
casseroles and vegburgers, things like that. Veg pizza is a big favorite--no
grease. <<
What's in veggie pizza? No cheese, I guess. Tofu?
I abstained from meat for about 4 years in my mid-twenties. I think
I was healthier. I don't have the will power at the moment. We have two
small kids and there's always meat in the freezer. Yuck, actually, but
I do eat it.
>> I feel like Ingrid Bergman, who when she was told she had lung cancer,
kept right on smoking to the end! <<
Feeling like Ingrid Bergman can't be ALL bad, I guess.
>> You only live once! <<
Unless you're one of those Cryonics fans who want to get frozen and
revived in a hundred years.
Thanks for your food comments, Kristen -- fascinating.
Date: Fri, 2 Feb 1996 04:06:11 CST From: Kristen Subject: Re: molluscum
Gil, Your reply to Shelley's query is intriguing to me, especially your
comments about the hands and contact allergens. Would these two factors
account in large measure to the problem of perpetually itchy eyelids? Even
when I take great pains to keep my hands off, the eyelids still itch and
I end up itching and rubbing them in my sleep. This is after I've showered
and washed my face well with Cetaphil and even the eye soaps before going
to bed. When I've had longer "hands off" periods, my eyes feel better and
the side effects of weeping eyes and blurry vision recede as well. So I
know I am creating a lot of my own eye problems. But it's nearly impossible
not to rub the eyes when the cursed itch lingers.
Date: Fri, 2 Feb 1996 04:34:33 CST From: Kristen Subject: Re: What
about food?
>> Wow, a year. I'm impressed. But did it help your eczema? <<
That's really a good question. At the time, I was so busy working two
jobs and because I think I have a tendency to repress past eczema miseries,
I don't remember specifics about the eczema. My impression after a year
was that it wasn't very significant or I think I would have thought it
was worthwhile to stick with it. I just felt so deprived and irritated,
I decided "the h--- with it."
I would actually like to lose weight. That episode was 20 years ago,
and most of the weight stayed off for about 20 years. The one thing I do
recall, on retroflecting, is that when I have been so busy that my mind
is totally occupied with many other things, when I literally have no time
for the eczema, it ceased to dominate my life. Guess that's why I believe
the psyche is a great part of the eczema puzzle.
Yes, supposedly breakfast is of prime importance. But if you can't have
milk on cereal, no wheat products (no toast, no pancakes, no bran, no oatmeal),
no anything that contains gluten (and most flour items have gluten), I
got bored silly on a total fruit and vegetable diet.
I do eat meat occasionally; about twice a year I order filet. And I
microwave bacon occasionally. If I have chicken, it's usually in small
amounts. Generally it doesn't appeal to me. Never eat sandwich or processed
meat, or sausages. Something about the texture repels me on the tongue!
Feeling like Ingrid Bergman can't be ALL bad, I guess. I think the thing
about eczema that irritates me is that it deprives one of so many things--activities,
foods, risks one dare not take or pay the consequences. Years ago when
I went camping, knowing I would be miserable by the end of it, recovery
was long and excruciating. I was much more self-conscious about it then,
and it was my personal, very dark secret that had to be kept hidden at
all costs. It was a huge constraint; I felt like I was living my life in
a strait jacket.
I very much appreciate your reply, Ralph. Don't think I've ever "said"
how I really felt about this problem before. It's something of a relief!
When I was growing up, most things were off-limits for discussion, least
of all my particular problem.
Date: Fri, 2 Feb 1996 09:45:47 ... From: Richard Subject: Thin Skin
I've been told about "thin skin" and topical steroid use since I started
the AD ride 30 years ago. Well, I was in the Doc's and I looked at my arms
in the neon light. They have a bluish cast which looks like light bruises.
The doc said "thin skin" and it's reversible. I have to tell you that I
got really scared. So my question is, has anyone dealt with this? Does
it clear up? Is it topical or systemic or both? How long does it take to
clear up? What happens when one has thin skin? Is the meat on my arms going
to fall out?
Date: Fri, 2 Feb 1996 13:57:47 -0500 From: Shelley Subject: Re: Massage
Kris, I get an hour massage, and could actually take more. I first got
into getting massage as a child when a doctor "prescribed" it. I had to
get a massage every day that my skin could handle it and I've been hooked
ever since. It's a very interesting psychological experience to get massage.
It's much easier for me to receive the touch by a professional giving me
a massage, than it is for me to be touched by a loved one, though I have
been doing much better with that lately. When I get a professional massage,
I surrender to the treatment like I do when going to all doctors. I just
go limp and let them do what they're supposed to do to me. And it feels
so good.
Every time I get a massage, I think about how scratching is a twisted
attempt to get this touch that I crave and how I am insatiable for this
feeling. Yet with loved ones, I usually feel uncomfortable getting touched
much, for a variety of reasons, mostly to do with it getting tangled up
with my emotional response to the touch. It triggers old fears and grief
and anger and it's not entirely pleasant the way it is with a professional
who is just doing a job and emotions have nothing to do with it.
Actually emotions DO get triggered when I get a professional massage
but I enjoy that because I can just lay there and think about them intellectually
and objectively. I don't have to interact and explain my complicated feelings
to the other person, I can just examine them privately and it's interesting
to experience it. When you have this condition your entire life, it effects
you more profoundly than you can ever explain to anyone. It's as if all
my frenzied scratching is not an attempt to get at parasites under the
skin but to somehow touch and comfort my aching soul that has endured so
much agony. When I get a massage, tears often come to my eyes. For me,
it is the only pure pleasure of the skin and I have it in my will that
if possible, I want a massage to be my last experience before I die...
Date: Fri, 2 Feb 1996 07:35:35 -0600 Subject: Re: Thin Skin
Hi Richard, I couldn't help laughing at your last comment! Wayne and
I have a half-century of living with eczema. I don't know if he has used
steroids as much as I have, but somehow the thin skin seems to perpetuate
itself as more thin skin. It hasn't "reversed" itself in my experience.
The skin in the bends of my arms is so thin that I have very prominent
veins that protrude and are easily seen. No digging to find a vein when
I have blood drawn! When I was at boot camp for ARNG 20 yrs ago,, some
of my sister privates reported me to the commander, and I was asked about
drug use! I was very amused--I had enuf problems without using needles.
What was more amazing to me is that anyone noticed it; I never examined
other people's arms just in passing!
But with cortisone use, if I bump or pinch myself anywhere from the
waist up, I get huge blood blisters that take a long time to recede. I
conclude that the blood is very near the surface, and I bleed easily. Altho
I also clot rapidly, so it's nothing to worry about, I guess. Thin skin
for me has meant extreme sensitivity to hot humid weather or cold--just
about everything that most people don't even think about. Limiting oneself
has become a way of life for me; kinda second nature now.
Date: Fri, 2 Feb 1996 14:34:48 EST From: Wayne Subject: This &
That
All this talk about food made me hungry, so I eat carry-out (Moo Goo
Gai Pan !) as I do this. You see, I am not allergic to any- thing except
certain peppers in Mexican food. When I hit one, however small piece of
the pepper, I break out into a raging sweat. (We have not talked about
AD and sweat glans yet). I am lucky I have chronic AD that is widespread
and dry/ with only oozing flare-upsand different levels of itch.
On itch, I notice3 kinds. Type one is the kind of itch that one or two
scratches takes it away for good. Type two, I'll call Shelley's Orgasmic
itch, which invites more itch until skin is torn up. Type three is an area
itch in that you can't point to the exact spot that invites scratch. Behaviorally
I have to keep from the temptation of Recreational Scrathing. Shelley,
your idea of looking at the scratch really makes sense, and works for me
sometimes. There is something about the raging Orgasmic scratch where I
almost automatically turn away from the sight of the damage. I'm lucky
so far, in that I don'g have problems with molluscum, itchy eyes, palm
blisters, etc.
For me, what works from the inside is the Chinese Herbal Tea being used
in the US & UK. (probably also China, eh?). Take care, Wayne 8.4/10
Date: Sun, 4 Feb 1996 12:51:59 -0500 From: Shelley Subject: Re: Thin
Skin
Richard, I'm nearly 39 and also used to fear the unknown effects of
thin skin. The doctors really scared me with all their warnings. Now thin
skin is just something I live with like all the other limitations of this
condition. The main effect as I age is that my skin tears so much more
easily than it did when I was younger. I remember I used to be able to
scratch really hard and the damage was a certain amount, but now I will
get the same amount of damage just from scratching lightly (what I consider
lightly). So I have to be more careful. And I think it tends to get infected
more easily because it tears more easily. It's interesting that Kris mentioned
the bruising effects. I get that too but I had assumed it was because I
inherited my mother's chronic leukemia. Hearing Kris, I think it's more
likely that my bruising is connected to my thin skin...
Date: Sun, 4 Feb 1996 15:02:28 EST From: Wayne Subject: Skin after
50 years
Hi eczema community: This thin skin conversation is making me think
about that issue because I don't think I have thin skin now. My skin was
thin before the period in 1979/80 when I was hospitalized for AD for one
week. Before that time I had been taking pregnisone (not sure about the
spelling) to fight back a major flare-up. I was red all over, oozing, and
shivering in the summer heat (because I did not have much of an outer layer
of skin to insulate, so I was losing heat in the summer!).
Anyway, I have not taken pregnisone since. I have never used a lot of
topical steroids. Probably I use two to three tubes of Lidex and Triamsinolone
(sp) a year.Even during my July 95 flare-up I did not use much steroids.
I used a bunch of stuff like bag balm and mom steroidal ointments and creams
along with bandaging, rubber bands for area itch, and some bathing. I am
thinking that is maybe the reason that it take me about 2 months to work
out of a flare-up.
This may sound like a contradiction, but if I have a serious flare-up
skin is thin. My usual is not thin. Anyway, skin is not thin, at least
for now. Skin is the dry type and is leathery at the joints, (lucky me),
rather than thin.My hands have always looked wrinkled, like someone 50
and over. Finally now that I am 50, my hands have reached my age. Wayne
8.4/10
Date: Sun, 4 Feb 1996 22:21:24 EST From: Gilbert Subject: Re: Thin
Skin
Hi, Shelly, Kris, and all.
Since several of you have mentioned problems with "thin skin" and are
making the association between it and eczema, I'd like to put in here that
one of the many problems associated with long-term use of cortisones (hydrocortisone,
prednisone, prednisolone, etc.) is not only thinning skin but also a breakdown
in collagen as well as alteration in the behavior of our blood platelets
(thrombocytes). The bruising (ecchymoses) makes me wonder again about steroid
use over extended time. Also, because cortisones cause a degradation of
collagen, the thin skin needs to be thought of as possibly part of the
same picture presented by others in the forum who've commented on general
breakdown of integument, including the venous blood-rich dermal layer under
the surface skin (epidermis) as well as some muscle breakdown (atrophy).
It's collagen which cements all these components into a three-dimensional
functional structure. Loss of collagen is another part of the "thinning"
process: three-dimension: two-dimension -- you get the idea.
I am not claiming that all incidents of these symptoms are cortisone
related. I am merely reminding of the fact that these are "expected" outcomes
of long-term cortisone "therapy."
PS: Is it possible that the high frequency of complaints re: telangiectasias
(spider-web-thin enlargements with or without hemorrhages in the tiny veins
(venules) of the dermal skin layer of the face might just possibly be "more"
a result of cortisone use (over time!) than of any direct or even indirect
effects of "eczema?" After all, eczema is itself not the only culprit in
this "can of worms." We all know the old saw about which is worse, the
disease or its treatments. . .
PS #2: The bruising phenomenon should not be confused with the issue
of coagulation in the context of clotting time. These have more to do with
separate "clotting factors" in the blood. The platelets -- they get fragile
(outright friable!) -- affected by cortisones present to the eye the appearance
of either tiny red specks under the skin (petechiae, i.e., tiny single
hemorrhaged venules) or as telangiectasias (that is, they hemorrhage or
enlarge [engorge] in line with the direction of the venule) or, finally,
as larger surface bruised areas (ecchymoses).
The combination of thinned skin, compromised dermis and diminished muscle
mass secondary to collagen loss, as well as steroid-dependant determinants
which discourage new tissue growth and healing add up and account for some
of the problems getting aired on the forum.
Date: Mon, 5 Feb 1996 13:29:19 -0500 From: Shelley Subject: Re: Ann
Hi Ann! I'm so glad you finally made it on-line. To everyone else: Ann
is one of the first people who contacted me after reading my May 1992 letter
that said I was desperate to talk to someone else who'd had severe eczema.
We haven't met but we've talked on the phone many times and she's got a
great sense of humor and is very resourceful in living with this condition.
She's a wonderful addition to our group.
Date: Mon, 5 Feb 1996 12:42:56 -0600 From: Kristen Subject: Re: Thin
Skin
Gil, Thanks for that extensive explanation about thin skin. I never
attributed that to the eczema--I knew it was the cortisone use. I think
the thinned out skin on my face is what makes my face so susceptible to
infection and any "foreign" substance I inadvertently expose it to. But
I'm more interested in the idea of the platelets become friable!! That
scares me a lot. I know what it means for the skin to be friable; it's
the necrotic skin of death even while one is alive. Are you talking about
the platelets of both the RBCs and the WBCs? If the platelets crumble within
the blood cells, does that bode ill for specific diseases like leukemia
or something?
And with destruction of the collagen and subsequent diminished muscle
mass, over time can one expect to lose ambulatory status or use of limbs?
Date: Mon, 5 Feb 1996 14:28:51 -0500 From: Jack Subject: Re: Death
Shelley, Nadia has also spoken about death, like "why don't I just put
an end to my misery and kill myself?". Naturally, Tamara and I are most
worried when we hear that kind of talk, given so much nihilistic thinking
amongst teenagers these days. (Nadia IS only 10, mind you.)
I think we've been fairly successful in dealing with this hopelessness;
we haven't heard death wishes in a while. However, Nadia still generally
ignores her bone dry or leathery skin as a way of avoiding the acceptance
of her state. And, given that she has had very few infections and has not
ripped herself up badly, we prefer a more peaceful home over the constant
nagging that would be needed to get her to pay more attention to moisturizing.
Date: Mon, 5 Feb 1996 22:35:57 -0500 From: Ralph Subject: Steroids
vs. Collagen
When I use topical steriods a lot, my skin seems to become quite friable.
When things are like that, I will sometimes lose a little tiny chunk of
skin if I accidentally scrape my hand against something hard.
That certainly fits in with the collagen connection. Without collagen
I think our bodies would be no more cohesive than a raw steak. We would
literally fall apart, except for the bones, of course, and they probably
are made of collagen too (I'm guessing) before they mineralize.
That's why I try to avoid steriods except when I see no practical alternative.
At this point I use Diprolene only about 4 or 5 days a month, at a guess.
Date: Mon, 5 Feb 1996 22:46:22 -0500 From: Ralph Subject: Dire Consequences?
I don't think so.
Kristen, I'm not answering for Gil, who obviously knows much more about
this than I do, but I think platelets are a separate type of blood cell,
not inside RBCs or WBCs. Correct me if I'm wrong, someone.
And I very much doubt that leukemia or anything similar is a consequence
of our problems or our use of steriods. Things may be bad, but not THAT
bad!
>> And with destruction of the collagen and subsequent diminished muscle
mass, over time can one expect to lose ambulatory status or use of limbs?
<<
Again, I would personally be very surprised if that were true. Not that
I'm an expert, but I never heard of any such result. I think we're just
doomed to keep on itching and scratching and sometimes to feel quite miserable,
but not to become disabled or life-threateningly ill.
Date: Mon, 5 Feb 1996 22:46:32 EST From: Gilbert Subject: Re: Thin
Skin
Hi, Kristen. Increased susceptibility to infection is even more related
to decreased immune function if we're still talking in the context of cortisone
therapies. All the same, a thinner skin will be weaker and more susceptible
to abrasions, tares and shearing-force types of injury.
I need to be clearer about the contextual damage to platelets (thrombocytes).
I rather regret using the term "friable" -- the problem that overuse of
steroids (glucocorticosteroids such as the cortisones) entrains has nothing
to do with necrotizing skin, so that fear seems unwarranted. Also, while
trying to be clear on this point, I'll mention that there is no such entity
as "platelets of both the RBCs and the WBCs." Platelets are a discrete
species of corpuscles, not quite cells, in fact. They serve several known
functions, one of which is to plug up torn or severed blood vessels. Cortisones
cause a decrease in number and efficiency of circulating platelets. Having
fewer platelets (thrombocytopenia) means that broken blood vessels don't
get patched and closed as effectively as they ought to. Minor hemorrhages
such as I mentioned in my letter yesterday will result. Platelets also
play various roles in signaling immune cells to "come to task." So, diminished
numbers of platelets add to a reduced immune surveillance.
Also, there is no association here with immune cell diseases such as
the leukemias. The frequent low platelet count found with those diseases
is due to other pathological causes.
>> And with destruction of the collagen and subsequent diminished muscle
mass, pver time can one expect to lose ambulatory status or use of limbs?
<<
No. The most "extreme" I could imagine would be an expected sort of
scenario where someone has such a reduced immunocompetence that "if" s(he)
incurs an injury to the integument, it might not heal. If an immortal wound
is allowed to get worse, to get infected, etc., then the condition could,
of course, result in gross damage. If the damage is so extensive and threatens
to keep extending in size, depth, etc., then "lose of . . ." might be a
real occasion. But then, here, we're talking about unbridled infection.
For all that, I can't help but remind that "unbridled" suggests that the
wound was not or could not be contained. Containment is the primary function
of the "unpleasant" phenomenon we call "inflammation." Inflammation seeks
to "wall off" injured areas so they do not spread. Then, in confinement,
the injured area can be dealt with discretely by our protective mechanisms
(i.e., the immune system, etc.).
Date: Tue, 6 Feb 1996 13:37:27 -0500 From: Shelley Subject: Re: thin
skin
Gil, I really appreciate your insights and ability to tie together all
the symptoms and come up with the common cause. I agree that the long-term
use of steroids and cortisone is the culprit, not the eczema. If people
can manage to live without those drugs, they should do it. When you're
a child, your parents make these decisions for you, and you have no choice
in the matter. As with all drugs, if you're going to take them, you should
be an adult who can give informed consent, willing to take the risk of
the side effects. As for myself, I have no regrets. I've been in such agony
so many times that without that medication I would have either committed
suicide or gone berserk and landed in a mental institution. The point is
that it must be used as a last resort. People should try everything else
first, like Wren is doing, but when you're desperate, it's worth it. Of
course, I'm only 39. Ask me again in 20 or 30 years after further damage
is assessed...
Date: Tue, 6 Feb 1996 15:02:25 -0800 From: Ann Subject: misc. comments
Wayne, how do you use rubber bands to control itching? I am learning
so much already. I had never heard or used the word "friable" before I
got online!
Ladies, I have the idea that we eczema women use steroids more readily
that the men. I confess to often using the stuff for cosmetic reasons.
Whereas the men I've encountered with skin problems like mine seem to only
use drugs for itch control. I wonder if anyone has done a study on this.
Now that I am close to 50, I do anything I can to avoid a red face, because
someone always seems to point at me and shout "HOT FLASH!" (half joking)
I have learned to not apply cortisone right after a scratching frenzy.
If I wait a few hours (maybe overnight), it's easier to zero in on the
really bad area and I can avoid zapping areas that were only temporarily
red from the scratching. Also, I like to use Eucerin cream as a moisturizer
because its white color tones down the red. Whereas, the vaseline seemed
to highlight it. The psychological boost I get is worth the 5 fold price
difference, I guess.
I also have sinus trouble. When my sinuses get bad, the skin gets better
and visa versa. When I have a fever, my skin clears completely. Does anyone
else experience this? My allergist thinks this is unusual.
My current passion is to get Elocon and other potent skin meds in a
stick form. It would be much easier to apply sparingly without zapping
the fingers each time. If anyone is out there from the drug companies,
please push this idea through your R&D dept. fast!
Date: Tue, 6 Feb 1996 22:34:12 -0500 From: Ralph Subject: Re: sinus
trouble and eczema
Ann, I have made the same observation, and have even mentioned it here
on the list. It puzzles me. It's almost as if my immune system needs to
be fighting *something* all the time. When it's busy with a real illness,
it doesn't bother with my skin, so my skin gets better.
I guess that's a ridiculous theory, but it's the only one I can think
of.
Date: Wed, 7 Feb 1996 01:24:43 EST From: Gilbert Subject: Re: thin
skin
You said it! You said it! "As a last resort. . .," seems to sum up the
cortisone thread in four words!
Date: Wed, 7 Feb 1996 01:24:39 EST From: Gilbert Subject: Dire Consequences?
I don
Just a couple more comments re: platelets and the issue raised regarding
possible loss of mobility:
I gave the "no" answer to the issue of loss of mobility because the
context was "over time." In other words, even long-term steroid use with
all its decrements does not cause ambulatory loss. OK, every global statement
probably has its exceptions. Here, there is one exception. Acute muscle
weakness (myopathy) can result from massive acute systemic cortisone administration.
I did not mention it before because it simply doesn't apply to our situation
with eczema in this forum. So, there is an exception to the rule, but it
would take a context such as massive chemotherapy (that's an example) to
bring on such a myopathy. Even then, it is reversible with cessation of
steroid treatment, though it usually takes a couple months to reverse out
the myopathy. I'm mentioning this only to be complete. This scenario does
not apply to eczema or other atopias.
And, finally, just a note to clarify the query about what platelets
are and aren't. Technically, platelets are not cells. Since they are not,
we don't call them cells but give them the name, corpuscles. And here's
why and what the distinction's about:
White blood cells, red blood cells, and platelets (i.e., all the constituents
of what we normally think of as blood "cells") derive from a common ancestor
stem cell in the bone marrow. This marrow stem cell is acted on by physiological
determinants (ex. micro-hormones, enzymes, etc..) which shape its destiny.
If we use the analogy of a tree whose trunk is the stem cell, then we can
trace the course of development which it will take. Some stem cells are
acted on so that they become red blood cells, others are acted on differently
and become white blood cells. Think of these as large branches stemming
off the stem-cell trunk. This process of development is called differentiation.
The particular destiny of the cell in question is termed it's "path of
commitment."
Just one step further and we can appreciate that even these branches
will further differentiate and commit themselves (i.e., be committed) to
even more specialization through differentiation. Therefore, some white
blood cells are "lymphocytes," others are "neutrophils." And, this story
goes on and on. Following this same analogy, the diversity is just as rich
and rewarding in the branches of RBCs. For example, the RBCs which produce
IgE are one generation from their "parent" generic RBC.
And, finally, there are platelets: These entities are servants in attendance
to more complex blood cells such as RBCs and WBCs. Platelets don't need
to possess "intelligence." Therefore, they derive from the common stem
cell by extruding their nucleus along with other organelles associated
with complex interactive decision=making obligations. Because these erstwhile
"cells" have extruded a number of intracellular regulatory components,
they no longer possess the "relative" independence we necessarily associate
with what we call a cell.
Well then, what are corpuscles (i.e., platelets)? They are globs of
cohesive, interactive enzymes which can be "called to task" by WBCs. A
WBC will, for instance, issue an instruction -- and notice that this requires
"intelligence," hence a nucleus with DNA and RNA which enable it to live
and multiply, to repair itself and to manufacture environmentally significant
products -- and the "dumb" platelet will be the chemically active glob
which will "respond" by turning over its chemical reactions into product
of one description or another. It should come as no surprise that platelets
don't last very long -- they don't have the where-with-all to reproduce.
They serve and desist.
The topic is complex but interesting. I don't think it's germane to
our forum interests, however.
My purpose, therefore, is merely to "try" to clarify some physiology
so that there aren't misunderstandings. Sorry for playing professor.
Date: Wed, 7 Feb 1996 09:56:17 -0600 From: Kristen Subject: Immune
system
Gil, Do you know if much can be done to rebuild a depressed immune system?
I've used cortisone consistently nearly every night for the last 36 years.
Based on what you've just explained, some of us are classical cortisone
junkies with long histories that will never be reversed. What does this
bode for skin problems when one is (lovely word, this) elderly?
Date: Mon, 5 Feb 1996 18:22:13 From: Wayne Subject: Kids and AD, Chinese
Herbal Tea
Jack and the AD community: The Chinese Herbal Tea I am taking IS from
the Washington Hospital Center, Dr Fountain is one of my dermatologists.
Too bad you are not in the UK where the CHT formula is in pill form and
available on restricted prescription. I heard that these pills may be available
in Canada, by prescription. I don't know if you have any contacts up north.
It is always painful to hear a story like Nadia's...she will find out
that we can make it. But a pre-teen doesn't want to hear that; that is
why your idea of her just meeting someone her age would help. "Kids with
AD" is a forceful affinity group, just as "Parents with infants/children
with AD". Maybe soon, as we develop online the kids can get together during
the spring or the summer. Some of you already know, I was 45 before had
a meaningful conversation with another person who had AD. I think that
that is part of the reason we are here; to learn what we do not know, and
also to make it better for the young people with AD. Wayne 8.4+/10
Date: Wed, 7 Feb 1996 13:49:57 -0500 From: Shelley Subject: Re: Nadia
Jack and Tamara: Re Nadia's talk of death, I think that's a normal reaction
given her condition. I really applaud your efforts to find other kids with
eczema for her to talk to. I wish my parents had made such efforts. It's
true that you can't understand in the way she needs to be understood, by
her peers. I wouldn't worry too much about her lack of moisturizer use.
If she's comfortable enough to do without it, she's OK. Eventually she'll
learn to take care of herself and figure out what she needs to do to feel
better. All you may be able to do is to react matter-of-factly to her talk
of death with a sincere response like "I know it must feel awful honey,
and I wish with all my heart it was within my power to make it go away.
But I'm as frustrated as you are. It makes me so angry to see you suffer
and feel helpless to make you feel better. But as you get older it's probably
going to be easier than it is now, and I hope you can hang in there long
enough to see what life is like when your skin is better. There are lots
of other people who suffered through this just like you're doing and they
wished they could die sometimes too. Remember that woman Shelley that you
met? She felt the same way when she was your age. There were times when
she just couldn't take it anymore. Many nights when she cried and screamed
and tossed and turned for hours and hours all night long. And days too.
But she got mad that this bad skin was making her want to die, and she
told herself that she wanted to be tough enough and strong enough to keep
living till her skin got better. And she did! And so did lots of other
people. And I know you can do it too because you're really strong inside
the way you need to be to do that. And I hope I live long enough to see
your skin better too." Then just hold her in your arms and maybe for a
little while she won't feel so bad.
Date: Wed, 7 Feb 1996 17:34:09 EST From: Gilbert Subject: Immune system
Hi, Kris: I'll reply more specifically to your letter in a couple days.
For the time being, let's remember, though, that much of the potential
damage we might associate with long-term (and usually high-dose) steroids
centers more on structural deficits such as loss of tissue integrity. Compromise
of the immune system associated with steroid therapies is far more likely
short-term and reversible -- at least in the reasonable context of our
discussion. So, immunological questions could arise such as "do wounds
heal as they ought to?"
Date: Wed, 7 Feb 1996 17:26:19 -0600 From: Kristen Subject: Re: This
& That
Speaking of spicy foods, I avoid them like the plague, Wayne. I end
up coughing, sneezing, and choking, while my eyes run like a sieve and
so does my nose. I had never experienced sweating until I reached "change
of life." That's another joy. As you probably know, sweating creates itch
even if one never had it before. It means numerous showers, when possible,
and air conditioning--the biggest necessity of all.
If I asked my Dr., would she be able to prescribe the Chinese herb tea
pills here in Wisconsin? I belong to an HMO--a mixed blessing at best.
Date: Wed, 7 Feb 1996 17:39:00 -0600 From: Kristen Subject: Re: Steroids
vs. Collagen
Ralph, I envy you your reduced need for cortisone. If you have ever
had eczema literally from your scalp down to your ankles, you would do
anything for deliverance. Cortisone is the only med that allowed me to
actually function like most people, rather than hurt at every move I made.
I don't regret its use, even if it kills me.
Date: Wed, 7 Feb 1996 17:44:24 -0600 From: Kristen Subject: Re: Dire
Consequences? I don't think so.
Ralph, When I read one of the last issues of the AD newsletter, several
pages recounted others' experiences from a poll they had taken. Most of
other people's experiences were the same as mine; emotionally, it is devastating
to feel like a freak, especially when one is young. For girls, it is even
harder because our culture judges females on our looks 99%. It's only a
slight bonus if we happen to have a few brains along with our looks. It's
also a lot easier for males to cover up their derm defects.
The poll also mentioned how much time is lost from work because of AD.
I remember being sick with skin problems for weeks at a time. I was too
much of a mess to be out in public, not to mention it is impossible to
doctor the problem unless one is at home with all the bottles and creams
and lotions and a bathtub. I'd trade you the hand bubbles anytime!!
Date: Wed, 7 Feb 1996 17:56:24 -0600 From: Kristen Subject: Re: misc.
comments
Hi Ann--so true. We women have to have attractive faces, or our worth
is questionable. If we don't look pretty (and it's pretty tough if one
has facial eczema to look pretty), we'll never attract a husband. Horrors
and Ruination!
Until I was 18, I used to have constant inflammation above the upper
lip--I died a thousand deaths. I wanted to go around with my head in a
bag. And cortisone let me lead a normal existence for nearly 20 years--it
was worth it. The biggest detraction I've run into is arrogant doctors
who with all their erudition are so sure we, the person inside the skin,
couldn't possibly have enough brains to understand our own condition or
the dangers of cortisone. Their brush off's still make me see red!
The inflammation is a huge embarrassment. I've also had such tremendous
heat, I swore I was burning up inside myself. Of course, I know now that
the heat was the price for cortisone overuse.
Never heard of Elocon? What is it?
I haven't gone through wet wrapping since I was about 10. Incapacity
is a better description. I think I get much the same effect with a soaking
bath or a long cooling shower. Wrapping sounds like a hemongous time-consumer,
probably with short-term effects. Or do you recommend it? Do you tolerate
skin-skin contact well? I can't bear to "stick" to anybody else's skin!
Date: Wed, 7 Feb 1996 17:35:57 -0600 From: Kristen Subject: Re: Skin
after 50 years
Wayne, I've never heard of bag balm? What is it? I admire your willingness
to wait two months to get over an exacerbation. I no longer have any tolerance
for derm crises. The misery just isn't worth it to me. Better I live a
shorter life than a longer one in agony.
Date: Thu, 8 Feb 1996 13:41:24 -0500 From: Shelley Subject: Re: Eczema
book
I just found a 1994 book called The Natural Way with Eczema by Sheena
Meredith, published by Element, Inc. in Rockport, MA. It's a $5.95 paperback
that claims to be "a comprehensive guide" to alternative treatments. I
wouldn't call it comprehensive but it does give a certain amount of basic
info about a wide variety of holistic treatments including EPO, herbs,
acupuncture, reflexology, etc. Criticism: The Chinese herbal tea mixture
of ten herbs is mentioned, but the ten herbs are not identified. The coverage
of Western medicine is poor, especially the statement "Unlike some other
chronic ailments, conventional medicine has a pretty good understanding
of the causes of eczema, does take account of how it is affected by lifestyle,
personality and stress, and can usually effectively alleviate its symptoms."
If that was true, the book wouldn't be necessary! Anyway, it's the first
book specifically on eczema that I've seen currently in print in the U.S.
I found it at Barnes and Noble bookstore.
Date: Thu, 8 Feb 1996 13:41:33 -0500 From: Shelley Subject: Re: Ann's
misc. comments
Ann, we are interested in hearing whatever you can tell us about recent
treatments you've used. A lot of valuable material has already been come
up, but so far not much on wet wrapping and allergy shots. Do tell us whatever
you know about that. As for Elocon in a stick form, that's a great idea
and the kind of thing that EASE should be involved in promoting, since
I've gotten the impression that they are in bed with the drug companies.
Perhaps Wayne can mention this at the upcoming meeting this Sunday. The
only problem I can see is that the consistency of the cream would have
to be different to harden it into a stick. Wouldn't that require research
to figure out how make it fit the package and still maintain the effectiveness
of the cream? I'm sure there's a way to do it. I really like the "roll-on"
no greasy hands style applicator of Cleocin-T antibacterial liquid that
I use. But that's a liquid so there's no comparison...
Date: Thu, 8 Feb 1996 21:04:36 -0500 From: Ralph Subject: Re: Dire
Consequences? I don't think so.
>> For girls, it is even harder because our culture judges females on
our looks 99%. <<
I hadn't thought of it that way. I can see how that might be more difficult
for a woman. However, I recently heard about a young man (17, I think)
with eczema on just his hands, from his mother. She said he was becoming
depressed and reclusive because of the problem, and wouldn't socialize
or date because he felt self-conscious about his problem.
BTW, I don't get "bubbles" on my hands, just intense itching, scaling,
and cracks across my fingers. It can be quite painful at times.
Actually, I realize that I misused the word "disabling" in my previous
message. I meant to say that eczema would not lead to bone degeneration,
or (to my knowledge) cause a person to be unable to walk, or bedridden,
or confined to a wheelchair. But your message shows that eczema can be
disabling in other ways. I stand corrected.
Date: Fri, 9 Feb 1996 11:17:24 -0800 From: Ann Subject: reply to Kristen
and Shelley
Wow, I've spent almost a lifetime thinking I was the only person who
indulged in recreational scratching, who experienced orgasmic scratching,
and who often itched but couldn't pinpoint where I itched!
My respiratory problems are much better with allergy shots. I also use
various antihistamines, and , of course, nasal steroids. When I'm not slathering
it on my skin, I'm snuffing it up my nostrils; I am a true steroid junkie!
Also, I do saline nasal washes. The nurses on the National Jewish Lung
Line are wonderful about telling you how to do it most effectively. They
also got me going on the wet wrapping. If anyone has the time, money and
motivation, National Jewish has great derm and allergy depts. They will
take you and completely analyze your immune system. I think it takes about
a week.
Yes the wet wrapping can be an extremely time consuming, life altering
activity. When I did it every night all over, it was the only way I could
sleep. The wet cloth felt so much better than dry cloth or than skin (
like where my legs would rub together). It also made the skin more resilient,
less powdery, less friable. Alas, the rash and inflamation were still there.
Elocon is a potent steroid type ointment. I think it would work in stick
form in the same way that a chapstick can be vaseline based. It would still
go on greasy, it would just be easier to spread real thinly. I don't use
any cream forms of meds. The greasier the better as far as I am concerned;
my derm doctor agrees with me on this.
Allergy shots have been my salvation. I guess it could be placebo effect
or just coincidence? It took over a year before I really started improving;
and at first I went downhill with some really bad flares. I'm still pretty
much covered, but the rash is so much less dramatic. Now a flare is pink;
it used to be deep, deep oozing burgundy. Sinuses are better too. The shots
only are appropriate for people who test positive to pollen and dust allergies.
Finding enough intact skin to test is a challenge for eczema patients.
My hives were mostly 6s and 7s on a scale of 0 to 4, so I looked like a
good candidate.
I also have global food allergies. But since I am underweight, my doctor
doesn't advise cutting out any more foods. except, of course, the ones
that throw me into anaphalaxis! Once I get to the maximum strength on the
shots (probably another year; this isn't for impatient patients), I'll
experiment with food.
Date: Fri, 9 Feb 1996 11:29:16 -0800 From: Ann Subject: REPLY TO RALPH
immune issues
Yes, that is exactly how it seems to me too; my immune system needs
to be busy all the time. I wonder if it would be possible to develop a
placebo type vaccine to work on this.
I also have the feeling that there are two types of eczema. People like
me have basically normal skin; but the immune system is out of whack with
the skin simply the target organ. Other people have skin that is deficient
or super sensitive itself. I don't know if this makes sense, but my allergist
sort of implied this. Anyone have any comments?
Speaking of immune systems, I confess to having a very politically uncorrect
AIDS phobia. I feel that my broken skin makes me an easy mark for the virus.
I believe that I COULD "get it from a handshake or a kiss." Any body else
feel the same?
Date: Fri, 9 Feb 1996 17:57:34 EST From: Wayne Subject: Responses to...
Ann: I use the thick rubber bands (like the post office uses to bundle
junk mail delivered) to put over limbs which have just been scratched in
response to orgasmic itch. I find that with orgasmic itch I will scratch
until things are pretty well torn up if I don't be careful. Watching the
damage I'm doing helps (idea from Shelley), so I stop scratching and put
these rubber bands over affected limbs, over some nice cotton pants or
shirt. This helps hold back the invitation to scratch on. I think what
happens is that the pressure of the rubber bands pushes back some of the
blood/fluids that heat up the itch. Also, the rubber bands cause sharp
pressure which substitutes for the destructive action of scraping nails.
You won't find this method in the Merck manual.
Kristen: Unless you have the formula that works and a well stocked Chinese
herbal shop nearby you are out of luck. Quality control of the stuff in
a critical issue. The formula that works for a particular type of AD (chronic,
refractory, dry, affecting all parts of body, and other I don't know of...)has
been mashed into a pill in the UK. So you can go to the UK and have it
prescribed. Maybe you can get it in Canada, I don't know.As far as I know
the only active FDA/US approved CHT study is at the Washington Hospital
Center. They are running out of supplies. Another hospital in the Pittsburgh
area is seeking FDA approval to conduct trials on CHT.
Bag Balm. Some psoriasis friends told me they use it. It is an antiseptic
that farmers use on cow after milking them. You can get the stuff at any
local feed store. I use it as an antiseptic and also emollient for certain
kinds (dry, brittle, oozing) of skin.
Shelley: Thanks for the rest of the story on Andrew in the park.
Along with Shelley's regional eczema conventions, and those who were
talking about a spa, I add that we need a National Eczema Retreat where
we can get all kinds of treatment, talk, read and aligh life. Wayne 8.5/10
Date: Fri, 9 Feb 1996 16:52:27 -0600 From: Kristen Subject: Re: Responses
to...
Wow--lots of stuff to ponder, Wayne. The bag balm sounds interesting.
Any idea what is in it? Like Ann, I need the greasy based stuff.
Rubberband "therapy" sounds intriguing--it is true that some sharp pain
does get one past the itch sensation. I used to take scalding showers for
that reason. The rubberband idea is certainly more benign.
A retreat would be a neat idea. Putting it together would be a real
job, and where would we have it? We AD people are all over the globe!
Date: Fri, 9 Feb 1996 17:09:24 -0600 From: Kristen Subject: Re: Dire
Consequences? I don't think so.
I regret using the term "bubbles." I thought you had mentioned getting
the little blisters that have fluid inside them. Certainly didn't mean
to minimize your bouts with AD--I do agree that scaling and cracks in the
fingers can be nasty little miseries, and very disconcerting. I keep my
fingernails cut back to the quick, so at least when I do itch, I can't
do terrible damage. But I've used a hairbrush in the past to do the job
when nothing else worked.
It's too easy for all of us to assume that AD isn't life-threatening.
It can be emotionally devastating, so much that it incapacitates one via
depression. My friends always used to tell me they didn't notice anything,
but they had no inkling how bad I felt--it's having this terrible imperfection
that one must hide at all costs, on top of feeling utterly miserable at
every move. Of course, I wanted to look like everybody else, and I must
have succeeded quite well. But when it becomes impossible to be out in
public, at work or school, there is no denying its virulence. I remember
refusing to answer a knock at my door because I couldn't bear to have anyone
see me. Of course, the party knew I was home, so I yelled through the door
that I was "indisposed." How's that for a put off? haha
But Shelley's account of some people she knows giving up hope is really
heart-rending. As an adult, I cope much better psychologically--partly
because I don't give a d--- what people think anymore. Unless I am so red-faced
I feel like I'm going up in flames (literally)! Eczema can make one want
to stay in a closet for life.
Just because someone doesn't look sick doesn't mean they don't have
an acute and/or chronic problem. I think our culture is much too quick
to judge based on outward appearances alone. Guess that makes us something
of a plastic society for most intent and purposes.
Do you feel embarrassed by the condition of your hands? Do people ever
stare and ask you what is your problem? And do you feel like explaining
it in public, when they do ask? Or do they seem genuinely interested in
your problem?
Date: Fri, 9 Feb 1996 17:32:22 -0600 From: Kristen Subject: Re: REPLY
TO RALPH immune issues
Ann, I'm not sure how you differentiate between one and the other. Cortisone
use has made me more susceptible to sunlight, heat, humidity and sweating
that I tolerated fairly well when I was younger and had never used it.
So I now have acutely sensitive skin. I'm not sure how one can tell if
it's an immune-based problem or just sensitive skin?
It's true having broken skin makes one more susceptible; I was refused
admission to nursing school at 19 because of it. They said I'd never make
it through surgery--hands were a mess. Guess it was an impractical ambition--in
retrospect. At the time I felt utterly destroyed. I know the paper company
at home wouldn't consider hiring me because of the eczema. They produced
Kotex, Kleenex, etc., in a sterile environment, and I was a risk--probably
both ways! I think you are correct about exposing yourself to any virus--true
for all of us, no doubt. Altho I've read that saliva and the skin do not
pass the virus on. It has to be blood or other internal body fluids. Broken
skin would make you a bad recipient for sure, though. For me, the eczema
has become an excuse to withdraw physically from people.
Date: Fri, 9 Feb 1996 17:36:03 -0600 From: Kristen Subject: Re: misc
responses
These are sad stories, Shelley. I can relate to the despair they felt.
We women are judged on our looks, but men with the problem don't have the
support system women usually can build to help them through.
Date: Fri, 9 Feb 1996 17:41:35 -0600 From: Kristen Subject: Other AD
people
Speaking of eczema community, I never knew it existed either before
I found this online group. None of the multitude of doctors I saw for years
(all men) ever thought to put me in touch with other AD persons. I had
never ever found anyone with the same problem even in my family--it runs
on my dad's side. Everyone else had all "outgrown" it--I was the martyr
in the family it seemed. So this is fantastic to talk to all of you about
a mutual problem and KNOW that you all can relate 100 percent!
Date: Fri, 9 Feb 1996 20:33:06 EST From: Gilbert Subject: Fears
Hi, Ann. Forget whether a fear is "politically" correct or not <g>.
You correctly use the word "phobia" to identify an irrational fear. As
a health officer in the field of infectious disease I engage in both clinical
and research areas of immuno(in)competence and, especially, AIDS. Professionally
(and therefore personally), I do not worry about possible contact contamination
such as a handshake, a kiss -- casual social gestures -- in the context
of the HIV virus.
Unfortunately, I cannot say the same when it comes to Staph infections
(there are too many to list here) and a number of other *bacterial* agents
which can present problems to folks with open skin lesions. If I had a
penny for everyone who's had to pay dearly for infections gotten from casual-contact
*bacterial* contamination, I'd be wealthy. If I had a fortune for demonstrating
a case of casual-contact infection from AIDS, I'd remain penniless for
it.
For what it's worth saliva is antimicrobial to HIV. An open skin contact
would need to be a compression lock against blood-exposing skin from someone
with HIV -- and it would require some "time" to enable viral transfer.
We do know of two cases where this was likely. The scenarios were in hospital
where nurses used their unprotected hands (their hands had open and bleeding
lesions) to compress bloody wounds on patients infected with HIV. This
is not casual contact, it's outright forceful blood-to-blood impregnation
and is indistinguishable from other impregnations such as the sharing of
"dirty needles."
People with open skin lesions feel vulnerable to both the facts of infection
and to the idea of infection. Facts and ideas don't always match, however.
Date: Mon, 12 Feb 1996 08:46:30 EST From: Tyrone Subject: Skin Discoloration
My daughter has eczema on her arms and legs. The skin in these regions
has become discolored. We live in the Northeast and her body is always
covered, at least this time of year. What would you suggest to help her
skin return to its normal color? I was hoping that with summer, her limbs
would be exposed to sunlight which would help the healing process.
I admire you all in being so proactive in your own care.
Date: Mon, 12 Feb 1996 08:51:27 -0600 From: Kristen Subject: Re: Skin
Discoloration
Hi Tyrone, You mean her skin is mottled appearing? Inflamed? Has she
been using cortisone ? Where is it discolored--all over, or just in certain
areas? Kris
Date: Mon, 12 Feb 1996 10:48:06 PST From: Wren Subject: Re: Skin Discoloration
Hi Tyrone, My skin has become a slight reddish brown on all parts of
my body where I itch, which is nearly everywhere. I only have a couple
of small yellowish patches left. Periodically I get complimented on my
tan or looking healthy from being out in the sun. I either reply "thank
you" or explain that I have a skin condition that makes my skin look this
way. I 'm hoping that as my condition improves the red-brown will revert
to my God-given olive white-yellow color.
I don't see it so much as proactive, as fighting for the return of my
former healthy skin. I want it back, damn it.
Date: Mon, 12 Feb 1996 15:21:12 -0500 From: Ralph Subject: Re: immune
issues
>> I also have the feeling that there are two types of eczema. People
like me have basically normal skin; but the immune system is out of whack
with the skin simply the target organ. <<
I was beginning to wonder about that possibility myself. I am such an
allergic person, and my eczema gets better when I'm away from dust and
pollen, and much worse during bad allergy times. But evidently that is
not true for everyone with eczema. Surprising and interesting. Maybe eczema
is more than one disease.
Over this past weekend I tagged along at a conference about managed
care. Also attending was an allergist who told me that there are two immune
systems in the body: the humoral, or IgE immune system and the cell-mediated
immunity system. (I think I'm getting those terms mostly right.) People
with allergies have IgE problems, while people with eczema are having trouble
with their cell-mediated immune systems.
He said that "infiltrates" of certain kinds of immune cells (I didn't
catch the name) actually get into the skin tissue and cause the itching.
These cells also supposedly interact with Staphyloccus (sp?) organisms,
which may explain why antibiotics are frequently helpful.
Date: Mon, 12 Feb 1996 15:30:47 -0500 From: Ralph Subject: Re: Dire
Consequences? I don't think so.
Sometimes people notice and mention my hands. Of course, they certainly
might notice and not mention it too, but I wouldn't know about that. Yeah,
it's embarrassing at times. I sort of hide my hands to some extent when
the eczema is cracked, bleeding, oozing, etc. I even tried wearing white
gloves for a while, but people REALLY stared at those, and asked a lot
of questions, so that was no good.
Some other people do seem interested and concerned in a nice way. I
think the interested ones either have a similar problem or know someone
who does.
To be honest, I wish I could just stop thinking about eczema and allergies.
I get tired of it all. And I know that my problem is about one tenth as
bad as that of many others on this list.
Date: Mon, 12 Feb 1996 16:28:17 -0800 From: Ann Subject: eczema's effect
on work
Kristen's story of missing out on two careers really hit home. I had
interests in science, but my first dissection was my last, due I guess
to the formaldehyde on my hands. More damaging to me, though, has been
my view of myself as a person who can not due many ordinary things. I was
rashy from the age of 3 months on, almost died at 15 months from a massive
herpes skin infection ( I still get them everywhere), never could crawl
on carpet or grass, never could pull taffy or do crafts, needed a special
cloth on my chair at school because my rashy legs stuck to the shellac
(this was before girls could wear pants) etc. , I still consider myself
to be an underachiever, quite possibly because of all the things I couldn't
do in my formative years because of my skin and the feeling that I was
fragile.
I was always glad I wasn't a boy because I was sure I would have been
labelled a sissy. My motor skills developed very late and slowly (my handwriting
is still strange); I think this was due to my not doing a lot of normal
childhood things ( no crawling, no clay etc.) What I'm trying to say is
that while Kristen heard "you can't do what you want to do" from the Nursing
School people, I (and probably a lot of us) heard the same message from
our parents and our own egos from day one. But because it was "just a skin"
problem , we missed out on whatever counseling was available for those
with more serious handicaps.
Date: Tue, 13 Feb 1996 16:39:46 -0500 From: Ralph Subject: Re: FAQ
Addition ?
I am intrigued by the idea of trapping moisture. My own experience has
not pointed in that direction, but I will try this technique and report
back on it. I can't say that dryness is my major worry most of the time
-- rather it's the itching, as well as pain and sensitivity from cracking,
that bother me.
Date: Tue, 13 Feb 1996 16:56:59 -0600 From: Kristen Subject: Re: eczema's
effect on work
Very interesting, Ann, what parallels we AD people seem to have. I have
always been a 'late bloomer'--usually ten years behind my friends in activities,
etc. I was a very patient, noncomplaining child, but WOW! have I changed
as an adult! I no absolutely no patience with health care professionals
or healthcare systems that give me the runaround, and I am very verbal
about it, too! Not a popularity contest anyway, but I refuse to put up
with the bad treatment I always just accepted, because "that's the way
things are." Balderdash!!!
And, What ego? My life has been mostly put-down city--until I got tired
of it all and just started fighting back. People don't generally appreciate
feistiness, but it was get feisty or be a complete doormat my entire life.
>> But because it was "just a skin" problem , we missed out on whatever
counseling was available for those with more serious handicaps. <<
Yeah--you can say that again. AD couldn't be very serious--you can still
walk, talk, run--do everything everybody else does. The price we all pay
is invisible (for the most part) to others, and we collude in this impression
by minimizing our own problems. I firmly believe that the psychological
price we pay for this disease is at least as high as the physical price.
Date: Tue, 13 Feb 1996 17:43:16 -0600 From: Kristen Subject: Re: Dire
Consequences? I don't think so.
I appreciate the embarrassing hands scenario--I keep my hands out of
the way because of my embarrassingly cutback nails. Makes the fingers look
stubby in this era of long, tapering fingers with long red-painted nail
polish!
I sure appreciate your feeling about "tired of eczema"--when it colors
one's every thought, wish, and action. My friends think when I go into
a slump, a few days will do it. I spend literally weeks and months crawling
out of my physical and mental depression over the constant daily care,
the wear and tear of it all. Ann mentioned being an underachiever--probably
very true for many of us. We must devote a big chunk of our lives to the
mean act of daily care, forsaking many really longterm goals. The eczema
has always made me think twice about possible ventures I might pursue,
with the consideration for personal care getting top priority and in hopes
it won't be a conflict of interest. Cheers, Keep up the good fight, Ralph.
Date: Wed, 14 Feb 1996 17:47:15 -0800 From: Ann Subject: Anger
It interests me to hear that other skin patients direct their anger
at the medical profession. Myself, I've been fortunate to find doctors
who aren't aloof and seem sincere in their attempt to help me. The fact
that no one has found a cure or a safe treatment for eczema isn't our doctors'
fault. I have to admit that if I were a healthy. wealthy person who wanted
to donate billions to medical research, I wouldn't select a skin condition
that has a low mortality rate and that often clears up or gets much better
for long periods of time in many cases.
As for MY anger, it is directed at those non-allergic clear skin souls
who offer me catty suggestions or make unkind comments. Once at a large
gathering, one such person asked me, when we were seated at the table,
if I knew that there was a big welt on my neck! On another occasion, her
sister said that I had sinus trouble because I once had a nose job ( it
was just to remove a knob on the very tip of the nose; no bone or sinus
intervention was done). She, a "mature" woman, also told me it was disgusting
that I did saline nasal washes. Their mother has remarked that if I ate
a better diet, my skin would be clear and that it will be so interesting
to see what happens to me at menopause! (am I her lab animal?) I also know
someone who once had widespread eczema and is now completely clear, and
has been for years, due to alternative medicine. She is also extremely
successful and attractive and I think I feel envy (who wouldn't?) rather
that anger at her.
Anyhow, I think it's important for us to direct our anger outward -
at doctors, unkind people etc. - rather than at our own skins.
Date: Thu, 15 Feb 1996 12:02:13 -0500 From: Shelley Subject: Re: skin
discoloration
Tyrone: If you mean loss of pigment, I have that on my elbows, where
there's a two-tone effect in patches where the skin is partly bone-white
and partly my normal flesh color. I've also seen Alan's skin with loss
of pigment in various places. I know there's a reason that you can lose
the melanin coloring, but I don't remember what it is. I have had this
loss of pigment ever since childhood, and I assume it is permanent. Perhaps
Gil knows how this happens. Or do you mean some other discoloration?
Date: Thu, 15 Feb 1996 12:02:48 -0500 From: Shelley Subject: Re: FAQ
Don't take recommendations as strict guidelines that MUST be followed.
Suggestions are a place to start, and then you must experiment with your
own reactions, adapting them to your own individual situation. Flexibility
and patience are keys to managing this condition. Be aware that treatments
seem to work for a period of time and then don't work anymore and you must
figure out something new. But there are many approaches and you just have
to try one after the one and eventually something will have a beneficial
effect.
Date: Thu, 15 Feb 1996 17:58:57 -0800 From: Ann Subject: eczema distracts
from other probs.
I just thought of a big problem I DO have with the medical profession,
as well as my dentist and psychotherapist. If I go to a health professional
for some other ailment, the eczema invariably gets more attention (because
it's everywhere and so red and visable?). Once I was in the gynocological
stirrups and the doctor exclaimed "Wow, you are covered with this rash;
from here, I can see that your legs are really bad!" I had assumed that
she was focusing on her area of expertise. But her comment made me wonder
if I really got a thorough exam.
Also, for the past two or three years, I've had swollen lymph nodes
( groin and collar bone areas). The doctors say it's just a result of the
constant skin and sinus inflamation. But I wonder if it could be something
else that needs treatment. If a clear skinned person walked in with the
same symptom, would they get a more extensive work up? Does anyone else
with eczema out there have lymph node problems?
Date: Fri, 16 Feb 1996 13:09:49 -0500 From: Shelley Subject: Re: anger
and lymph nodes
Ann, I didn't mean to direct any anger at YOU for raising the issue
about doctors. I didn't feel you were questioning my activism. Your comment
simply became the hook that pulled up a bucket of rage from my bottomless
pit. I'm going out of town for a couple of days (so everyone will get a
brief respite from my daily comments) but before I go I wanted to mention
that I also often get swollen lymph nodes in my groin. Doctors have said
not to worry, it's just evidence of my body fighting off various infections.
Date: Sat, 17 Feb 1996 22:07:45 EST From: Gilbert Subject: Re: writing
the FAQ
Since "eczema" can be a confusingly general term, distinctions are in
order. For example, we will need to make sure our prospective reader does
not confuse all eczema "outbreaks" as being one and the same as "atopic
eczema" (i.e., atopic dermatitis). Also, in any discussions where cause->effect
comes into play, we'll need to be clear about what we "know" and what we
experience; signs and symptoms are not identical with disease entity --
yet they are "inextricably" bound up with evidentiary causation.
These are slippery slopes -- for lay people and for physicians; they're
slippery for basic scientists as well: immunologists and bench scientists
get confounded too. After all, not only are multiple factors at play. .
. they're playing different games with different folk. The array of variables
(situation, time; circumstance, environment) makes for confusion.
While we're definitely dealing with physical forces (heredity; repetitive-use
stress; environmental agents -- you name it!), there are psychological
forces and "tempers" that confound clinician and patient alike.
And even this business:
Which part of the immune system -- humoral? / cellular? -- is involved
in this or that expression of the eczematous state is unfortunately not
as tidy as simple assignments would suggest: Yes, eczema [if it's atopic
dermatitis!] is -- as a lesion -- caused by the "cellular" branch of the
immune system. The "lesion" we see is an inappropriate event of cellular
immunity [technically called a "delayed-type hypersensitivity response"].
Fine, but then why is it that most people with "atopic dermatitis" also
have problems with "allergies" and allergens? [that's the 'humoral' or
antibody arm of the immune system -- the "IgE" connection, if you will].
To further the nomenclature, these "allergies" and "asthma" are examples
of what two pathbreaking researchers by the names of Gell and Coombs termed
"Type I Hypersensitivity" [allergen provokes antibody | provokes->tissue
| provokes: effector-response such as rhinitis and asthma].
Scientists Gell and Coombs also classified and termed cell-mediated
hypersensitivity which they dubbed "Type IV Hypersensitivity." This is
where the "cellular branch" of the immune system comes in: T-Cells->intermediate
reactions->eczematic "atopic" dermatitis. Though atopic dermatitis is a
disease state, the cellular immune response is exactly what we try to elicit
when we test folk for TB: We want the cellular branch of the IS to mount
a response. We say to the patient, "Come back in two days so I can read
your skin." This delayed response -- it takes the T-Cells (they're generals)
"time" to communicate down the ranks to effector molecules (they're the
grunts who do the fighting) -- is a sign that the skin is protecting itself.
But with atopic dermatitis, it's sort of like Don Quixote fighting the
windmills. We're not doubting the ability to "fight," we're doubting that
the skin should be treated like a windmill: Yes, there's a genetic or hereditary
component to this cell-mediated atopia.
And there's also the same issue of the doubtful opponent with the Type
I response the asthmatic has: Why is antibody raising the sword against
windmills?
In point of fact and in point of frequency: Type I and Type IV hypersensitivity
reactions usually belong as symptoms within the same set of individuals.
Sure, there are exceptions. But, the general pattern is that we should
not be surprised to find a patient presenting with atopic dermatitis who
also has food allergies, or asthma, or "hay fever". Types I and IV (usually)
go together -- if we're talking about the "atopic state" of affairs.
One immune system with two branches (humoral and cellular). And both
branches bear the fruit of our travail.
Clearly, we don't have easy answers because we don't have an easy problem.
Purportedly, Einstein once said we need to make everything as simple as
we possibly can, but no simpler. <Give us a break!>
Date: Tue, 20 Feb 1996 14:09:20 -0800 From: Ann Subject: misc.
Gil, Your explanation of the immune response was really good and made
sense to me in terms of what I have experienced lately. You said it took
2 days for the skin immune system to react to allergens (as in a TB test).
When I was flaring so bad when I first started allergy shots, it was always
about 48 hours after a shot. At first, I thought it was happening because
I expected it to happen. But one day I got shots; then left the next day
on a trip to Asia. As we approached Hong Kong, I really flared (assuming
it was the peanut dust in the airplane air). Counting hours now, I know
it was the 48 hour post shot reaction. I was totally unaware then of what
time it was (my watch was on Asian time). Anyhow, the two day lag is something
to remember when trying to figure out the cause of a flare.
Shelly, my parents were the opposite of yours. They just saw one trusted
doctor; never even tried food elimination diets; and were offended when
anyone suggested an alternative treatment. I always felt their cautious
approach kept us from finding a cure. I guess no one can win!
Date: Fri, 16 Feb 1996 13:36:19 EST From: Wayne Subject: Re: eczema
distracts from other probs.
Ann and eczema community: Re swollen lymph nodes...mine swell when I
have staph infections. Apparently the lymph nodes produce some WBCs to
fight off the infection. I takes the nodes' swelling as a signal that something's
different that is going on in my system, and that my body is responding.
Wayne 8.5/10
Date: Thu, 22 Feb 1996 11:47:17 PST From: Wren Subject: Is Rationing
Rational?
Since I have this drat eczema virtually all over, I oil myself up several
times a day, and try to shower only every other day to keep from drying
out. I feel better after showering, but am dryer, especially my scalp.
But after 2 days of not showering, I feel like a little disgusting grease
ball. I use a grapefruit based non-soap to cleanse only the necessary areas
and to wash my hair.
Recently I got to wondering if maybe I should wet myself down daily.
What do you all do? I'm especially interested in those of you who have
large areas of eczema.
Date: Thu, 22 Feb 1996 18:46:16 EST From: Wayne Subject: Wet and Dry
Wren, I am sometimes affected 95% of skin surface, now it is primarily
dry over 50% of surface (I saw a tip from the National Jewish Center that
said that the palm of the hand is about one percent of body...don't try
to do this while you are waiting in line at the grocery store....).
I take soaking baths (20 to 40 mins) whenever I get that dry-all-over
feeling. I have to be real careful not to get into a rub-scratch-off-the-used-skin-in-grease
situation while soaking. I watch TV. After soak I grease up.
Date: Thu, 22 Feb 1996 18:12:26 -0500 From: Ralph Subject: Re: Is Rationing
Rational?
I don't have large areas of eczema (yet - knock wood), but all of my
skin can get itchy and uncomfortable if I shower too often. More than about
twice a week tends to cause discomfort.
Have you tried bathing with tar? I find it very helpful and soothing.
The product I like is called Zetar, made by Dermik Laboratories, Collegeville,
PA, and it's a prescription item. It's very black and kind of yucky, and
it makes the bath water smell like a roofing job on a hot summer day, but
it really makes my skin feel good.
Zetar's label states that the tar is dissolved in polysorbates. I don't
know what the polysorbates do, but the result is excellent. I soak my hands
in this stuff, mixed into a basin of warm water, and it helps a great deal.
There's also Balnetar, which is from Westwood and available over the
counter. It's a mixture of their "Alpha Keri" oil and tar. I don't like
this as much because the oil seems to be counter-productive for me, often
causing additional itchiness.
Date: Fri, 23 Feb 1996 16:36:25 -0600 From: Kristen Subject: Re: Is
Rationing Rational?
Hi Wren, I pretty much have eczema from head to toe in varying degrees.
Because I don't like to tolerate the sloughing (it can be embarrassing),
I shower every night--short showers, maybe 5 minutes. I also wash my hair
in the shower, which then becomes a 15-20 minute job. Sometimes I'm under
the shower long enough to feel "soaked," and then I make sure I cream up
all over as much as possible.
I also shower at least once daily, sometimes more when I'm having more
problems. Water gives me the most relief--comfort level is very important
to me so that I can concentrate on other things. When I'm wet and then
creamed up, I feel more "loose" with more freely moving joints--if that
makes any sense.
If I'm in really good condition, I might skip a shower for one night,
but the daily showering keeps the itch down, and the sensation of not feeling
"dirty" from loose skin particles. So I prefer more water rather than less
to keep myself functioning--also, as a safety measure against infection.
I've used pHisoderm for soaping, Cetaphil lately, and some bar soaps that
are gentle without perfumes. If you are interested in the bar soaps, I'll
check on the names.
I can't stand the gooiness of heavy oils, altho occasionally I've used
small amounts of Vitamin E oil I apply Diprolene to my scalp immediately
when after a shower when my hair is still wet--it doesn't seem to grease
up my hair as much as when the hair is dry. I use water to wash off all
the dead skin and doctor the new stuff underneath. If I don't use water,
I end up taking it off and then injuring the new skin underneath, which
is counterproductive. So that's been my daily regimen for a long time now.
Date: Fri, 23 Feb 1996 16:46:40 -0600 From: Kristen Subject: Re: Is
Rationing Rational?
Hi Ralph, You make the tar "toilet" sound very appealing. I'm wondering
how one would do this as a practical matter for the scalp and entire body?
A black tub afterwards doesn't appeal to me though! I remember using tar
in my late teens and early 20s--detested the smell, was sure everyone could
tell it and would think I had a bad case of body odor. Eventually, I gave
it up because cortisone was so much "cleaner."
Wonder if the Alpha-Keri doesn't have some "additive" that is the reason
for the itchiness.
Date: Fri, 23 Feb 1996 17:02:09 -0600 From: Kristen Subject: Re: eczema
distracts from other probs.
Hi Ann, I've never had a doctor who was so tactless, but lay people
have blurted out loudly "WHAT have you GOT on your NECK?" I was too young
and stupid and embarrassed; now I wish I had shot back, "LEPROSY." And
then laughed at her reaction. Isn't that mean of me? haha
I've had swollen neck glands--I ended up with something for three weeks
and was so weak and sick I lost 30 pounds. A doctor at work diagnosed mumps,
but it wasn't mumps. That was 20 years ago. Rarely get swollen glands/lymph
nodes anymore. Do get a lot of weeping of scalp and this has been going
on for a couple of years now. Am constantly "soaking" my head in the shower
(along with the rest of me) every nite.
Date: Fri, 23 Feb 1996 15:36:19 PST From: Wren Subject: Re[2]: Is Rationing
Rational?
Ralph, I've never tried using tar products. Does the tar stick to your
skin? I'll ask my doctor about the Zetar. Anybody know why tar calms our
skin?
Date: Fri, 23 Feb 1996 16:36:05 -0800 From: Ann Subject: bathing
I shower once a day in as cool water as possible. I use cetaphil bar
soap on underarms, crotch, and feet. (my feet are pretty clear). Right
now I'm using regular shampoo , but when scalp is bad, I use T-gel. I put
Eucerin creme on all over after drying. (when I'm feeling impoverished
and using vaseline, Idon't dry myself at all.) Then I put cortisone on
the bad spots. At night I wash my face with cetaphil liquid cleanser and
put Eucerin creme all over.
Here's some things that are on the edge, but I want to share them. I
find that shaving my underarms and legs very lightly with an electric razor
really helps as long as the skin isn't real bad. My derm doctor suggested
I try this to help exfoliate. I also think the vibration of the razor serves
as a scratch substitute and I am experimenting with this on the arms too.
I am going thru some real tough emotional stuff right now. It's in the
man-woman area. My skin is really good. I think it's because there's so
much natural adrenaline and cortisol in my system. I think I talked with
Shelley about this long ago. Does anyone else experience this?
I also became acquainted with someone who does psychic healing. I let
him give me a couple of sessions. (it was for free). Maybe it was the placebo
effect or the stress and crying I mentioned above, but skin and sinuses
got better and the lymph node went way down.
Date: Sat, 24 Feb 1996 13:33:08 -0500 From: Shelley Subject: Re: wet/dry/grease
I have full body eczema, Wren. What works for me is taking a shower
once a day and totally greasing up after that. Then through the day, I
use washcloth and more ointment for problem spots. For me, it's most important
to feel "clean", dryness is lower priority. I itch more from too much grease
than I do from dryness. But sometimes I feel dry-itchy and need spot wash
with creams; sometimes I put on too much ointment and it's too greasy and
the skin needs to breathe; other times I can tell that it's probably getting
infected and I need Cleocin-T. There are numerous feelings of discomfort
and itch and over time I've learned to understand what the nuances signify
and what treatment is required for each feeling. Of course, sometimes I
misinterpret the feeling and that causes more problems, but basically,
it's learning my own body language and forms of communication. Sometimes
it feels like our bodies are new life forms trying to evolve or emerge...
Date: Mon, 26 Feb 1996 14:11:33 EST From: Eric Subject: Houdini
I have a question for those with experience with children who have eczema.
Ezra has it quite bad on his face, mostly on his cheeks and a little on
his forehead, neck and chest. We have had to devise various ways to keep
him from scratching. We've begun to call him Houdini because he is quite
creative in getting his hands free (a little sense of humor goes a long
way with this, no?). Any suggestions in this area?
Date: Mon, 26 Feb 1996 13:55:58 PST From: Wren Subject: Re: bathing
Thanks to ALL of you who have responded to my question about our bathing
regimens. Think I'll try bathing more often, and perhaps try out the tar
treatment.
I am going thru some real tough emotional stuff right now. It's in the
man-woman area. My skin is really good. I think it's because there's so
much natural adrenaline and cortisol in my system. I think I talked with
Shelley about this long ago. Does anyone else experience this?
I've been thinking about emotions and my skin more and more lately.
I don't emote easily, though I speak my mind more frequently and vehemently
than I did earlier in life. However, I rarely cry. Even when in intense
pain from my eczema, I'll just barely whimper. I'm wondering if I was better
able to express my sadness and pain, somehow that might lead to an overall
release and possibly skin improvement.
So maybe your intense emotional outpouring is having a positive effect.
I also became acquainted with someone who does psychic healing. I let
him give me a couple of sessions. (it was for free). Maybe it was the placebo
effect or the stress and crying I mentioned above, but skin and sinuses
got better and the lymph node went way down.
That sounds great. Hey, whatever helps.
Date: Mon, 26 Feb 1996 16:50:41 -0600 From: Kristen Subject: Re: bathing
Wren, When I was younger I never gave a second's thot to stress/emotions,
but at mid-age, it has hit me like a sledge hammer that my psychic well-being
or non-well-being is critical.
Unresolved anger is worst of all--so now I take definite steps to remove
myself from chaos. That can be anything from frustrating people to irritating
situations. I literally withdraw from those environments/people.
In my youth, I was highly placid and tolerant. No more. I speak up at
will now, since I no longer care to please everyone else more than myself.
I was taught never to show emotions, so it is second nature to bottle
things up--not good for skin. My patience level with inanity is nil these
days, so I find myself keeping my own company more and more out of personal
choice.
Date: Mon, 26 Feb 1996 16:58:44 -0600 From: Kristen Subject: Houdini
Hi Eric, Believe it or not, we were all children at one time! My mother
used to make me wear soft leggings/mitts/gloves over my hands especially
when I was a small kid. Over time I wore holes right through the cloth
because itching was beyond my control. When the hand coverings were new
and I couldn't itch effectively, I used to scratch as far as possible using
my toenails!
But keeping fingernails very very short and frequent handwashing is
very important to keep from tearing up the skin and preventing infection.
Tylenol for kids might help take the edge off your child's nerves--I used
to take heavy duty transquilizers--a mere palliative but it makes one so
dopey and lethargic. I still rely on aspirin or something similar if I
feel antsy. Good luck.
Date: Mon, 26 Feb 1996 17:23:17 -0600 From: Kristen Subject: Re: Anger
Hi Ann, What is the purpose of saline nasal washes? How do they help?
I can testify that not much happens to improve eczema once a woman hits
menopause---it just means you have some more miserable symptoms to contend
with.
Date: Mon, 26 Feb 1996 19:31:23 -0500 From: Ralph Subject: Back to
my tar obsession
Zetar doesn't stick to the tub in any appreciable amount. You just rinse,
and it's gone. My dermatologist kept writing prescriptions for Zetar for
a long time before I actually went and bought the stuff. Now I wouldn't
be without it, because it's the only thing that soothes in a certain way
when I'm very itchy and cracked.
I think this form of emulsion (Zetar, the one with "polysorbates") might
be relatively new. I have used various forms of tar since I was a child,
and this stuff, though smelly, is in a different league from the others.
By the way, I don't think the smell is noticable to anyone else. No
one has ever mentioned it to me. But don't use your best white towel with
it, as it does stain to some extent.
Date: Mon, 26 Feb 1996 19:34:55 -0500 From: Ralph Subject: More Tar
Madness
My doctor (actually his associate, whom I've not met face-to-face) told
me that no one really knows why it works.
That seems very odd to me. Maybe eczema is not considered a "hot" area
of research, so no one has bothered to try finding the answer to that question.
If the active ingredient(s) were known, I suspect we wouldn't have to use
smelly black stuff. It would be something clean and convenient to add to
our bath water.
Date: Mon, 26 Feb 1996 20:10:29 -0500 From: Ralph Subject: Re: Houdini
My main suggestion is, don't wait around before getting Ezra some effective
treatment. We waited until my son was about two, if I recall correctly,
or maybe it was 18 months, before we took him to a dermatologist. The pediatrician
had been suggesting various innocuous emolients and so forth, which really
did nothing.
The dermatologist prescribed his usual combination of oral antibiotics,
tar baths, and twice-daily applications of Diprolene (steriod) ointment.
My son's eczema cleared up after the two-week treatment, which we performed
assiduously, and has never returned! His skin still gets a bit itchy from
time to time, and we put on a bit of Diprolene, but there has never again
been any significant whole-body involvement. He is now seven.
Date: Mon, 26 Feb 1996 18:03:21 ... From: Richard Subject: TAR
I seem to remember that tar either deadens the nerves or thickens the
skin. Ralph, I used ZETAR. It got into the grouting in the bathtub, blackened
everything (towels, clothes) and took a long time to show any results.
It didn't do much for me and I must say that I was glad when I stopped
using it.
Date: Mon, 26 Feb 1996 21:42:07 EST From: Gilbert Subject: More Tar
Madness
About coal tar's mode of action. Many theories have been suggested,
but the only one that enjoys scientific "approval" was put forward in a
professional paper published by Lowe et al. in 1983. Lowe and his group
showed that coal tar has "antimitotic effects" and proposes that that might
account for some of its action and effect. In other words, coal tar discourages
cell replication. Since one of the troubles with psoriasis and some eczemas
is the observed "thickening" of the skin which tends to "crack" and form
"scales," we're observing a phenomenon called "hyperplasia," i.e., the
skin's over-achiever attempt to regenerate and displace "because of the
injury." If an "antimitotic" agent can slow down this process, it is conceivable
that it can provide some benefit.
Date: Mon, 26 Feb 1996 23:52:34 -0500 From: Jack Subject: Re: eczema
distracts from other probs.
Nadia and I were in a bakery, where one of the friendly clerks struck
up a conversation with Nadia. She said to her, "Oh, you poor thing, must
have fallen off your bicycle, here's a cookie, darling." Nadia accepted
it gratefully, and gave me a knowing glance that was so ripe with meaning
it broke my heart. Amazing what kids can convey sometimes!
Date: Mon, 26 Feb 1996 23:57:18 -0500 From: Ralph Subject: Tar and
other speculative thoughts
But the mystery of the beneficial effect of tar doesn't really have
to remain a mystery, does it? I mean, drug companies sometimes test thousands
of compounds to see whether one of them will have particular properties.
Surely someone could take a look at a *known* therapeutic agent and figure
out why it works...
Date: Tue, 27 Feb 1996 20:28:48 +0800 From: Dev Subject: Houdini
Dear Eric, Please have Ezra seen to by a dermatologist if you've not
already done so. The main reason that he's doing a Houdini is because it
itches. A mild topical corticosteroid (eg 1% hydrocortisone or maybe something
a little stronger-if he needs it) and emollients can give lots of relief.
Many infants with atopic dermatitis are clear of it by their second birthday
but to wait a year and a half would be a little unfair to the child.
Many parents view treatment of AD with steroid creams with a great deal
of apprehension and suspicion but topical steroids used appropriately and
judiciously, are invaluable in treating AD. Moisturizers equally so.
Though there is probably some truth in the saying "to itch is only human
but to scratch, divine", somehow I do not think little Ezra appreciates
it.
I agree with Ralph and feel that too many people (including doctors)
spend too much time pussy-footing around with the treatment of AD in infants.
I hope that I'm not being too outspoken but I've seen too many children
(and indirectly, their parents) suffer unneccessarily from this attitude
(which basically arises from ignorance). So get little Houdini treated
and maybe he won't be stuck with the nickname for life.
Date: Tue, 27 Feb 1996 10:54:39 -0500 From: Ralph Subject: More on
eczema in infancy
There's another dimension to the itching in infancy which I forgot to
mention in my last message. My son was small for his age, eating very little,
at the time we finally had him seen by the dermatologist. We wondered if
there was a connection between the eczema and the loss of appetite, and
he told us that babies with eczema usually don't eat well.
According to this line of thinking, the young child's sensory apparatus
is overwhelmed with the itching, and doesn't process other sensations like
hunger very well. As a result (so goes the theory), the child doesn't really
know when s/he is hungry.
At 7, our son is still small for his age, but strong and healthy, and
we're very glad we had him treated.
Date: Tue, 27 Feb 1996 09:37:04 PST From: Wren Subject: Re[2]: bathing
Kris, Thanks for your thoughts on the importance of expressing emotions.
Have you found that your eczema improves when you vent anger, or perhaps
the contrary, have you found that your skin is worse when you don't vent?
I've made an appointment with a woman who teaches the Alexander technique,
which she said is based on rapid eye movements (beats me). She also said
that I probably have some blocked emotions that can be adding to my condition.
If this helps I'll let you all know.
In my youth, I was highly placid and tolerant. No more. I speak up at
will now, since I no longer care to please everyone else more than myself.
I was taught never to show emotions, so it is second nature to bottle
things up--not good for skin. My patience level with inanity is nil these
days, so I find myself keeping my own company more and more out of personal
choice.
Kris, though I do try to limit my contact with people who annoy or anger
me (I'll be working at home more now in part because I'm in a cubicle surrounded
by inanity all day), I like some contact and support. Aren't you lonely?
Or are you so involved with your own interests that other people's company
isn't that important? I live with my partner, who has two children, so
there's daily chaos, anger, frustration, smiles, learning, growth, and
love. Can't take only only half of the equation. And for me, the benefits
outweigh the difficulties.
Date: Tue, 27 Feb 1996 17:31:02 -0600 From: Kristen Subject: Re: Re[2]:
bathing
Wren, I've never actually documented--just recall skin problems when
my psychic health was less than optimal; and nonexistent when I was happy
with my life. I do know that prolonged anger has been detrimental this
past year, and when I feel miserable I don't want to be around people.
I've gone through lots of periods of "hibernation" over the years.
I limit myself to a few good friends and superficial contacts with others,
but I'm more interested in the life of the mind than in what passes for
conversation on a daily basis--most of it less than profound. I'm not interested
in someone's latest foray to the grocery store, if you know what I mean.
Books are usually more interesting to me than people. I don't like the
aimless busyness I see all around me--not much of sense behind the busyness
generally. I've lived alone since I was 27--big change at the time, but
I wouldn't go back to the chaos I grew up in. Solitude is very important
to me--more important than people just for the sake of people. That's probably
why I like this List---it's great to communicate with people like yourself,
but I also like the anonymity! I'm not good at close relationships--they
make me uncomfortable. And I want to spend my time on personal pursuits
in the time I have left.
Date: Tue, 27 Feb 1996 17:44:03 -0600 From: Kristen Subject: Re: eczema
distracts from other probs.
Hi Jack---I think it's heartwarming that your daughter can communicate
with you just using expressions! I never had that when I was a kid, so
your daughter is one of the lucky ones. You are to be complimented as a
parent who has established real sharing in the family. Nadia accepted the
woman's pity without going into explanation--even if for a different reason.
We adults sometimes underestimate kids' intelligence--they know a lot of
things at gut level whether adults spell it out for them or not. I always
find it condescending when adults don't tell kids stuff they should know--they
know anyway even when it hasn't been put into words by some omniscient
older person!
Date: Tue, 27 Feb 1996 22:09:47 -0800 From: Ann Subject: misc. comments
Kristen, The saline nasal washes are intended to clear out secretions
in the hope of preventing an infection in the sinuses. Also, if you use
nasal steroids, you want to get your nostrils as clear as possible before
spraying so that the drug gets where it is supposed to go. But the washes
are time consuming and can precipitate nose bleeds.
Has anybody else had eczema in the ear canals? The buzz from itching
there (with Q tips) is so intense, I have come very close to blacking out.
Date: Wed, 28 Feb 1996 14:29:11 -0500 From: Shelley Subject: Re: Eric
and Ezra
I was struck by your reference to Houdini. He was my idol as a child
because my parents would tie me up in restraints (handcuffs, strait jackets,
ropes, chains, you name it) to keep me from scratching but I would always
figure out how to escape - a la Houdini! And then I would get my revenge
by scratching even more furiously! Restraints may have helped me keep from
scratching for certain periods of time but psychologically they were the
worst thing for me. To this day I still am negatively affected by that
experience. I cannot emphasize enough that it's an awful thing to do to
a child. I know it's difficult for very young children to have any self-control.
I recommend keeping the fingernails extremely short, encouraging the child
to hold something in the hand at night, bite the arm or whatever's in reach,
or to pinch or slap the skin lightly instead of scratching, but don't tie
them down! What worked best for me is when I learned to tuck my hands under
my butt and pretend they were paralyzed. Later I learned to touch my fingertips
together one by one in a slow repetitive pattern that was hypnotic and
calming.
Date: Thu, 29 Feb 1996 10:39:46 -0500 From: Robert Subject: bathing
This discussion on anger intrigues me since I have come to believe that
venting anger more easily may very well increase the level of anger one
attains more easily, and, therefore a "ventor" of anger may actually operate
at a higher anger level most of the time because becoming angry happens
more easily and venting is a pleasureable, ok activity if that makes sense
to anyone else. Also, I find that it has become much harder for me to accept
other people in friendships and to make friends as I have gotten older...I
don't have the patience it seems for mindless discussion for discussion
sake and find it hard tolerate people unless they have something to say...I
believe this creates a wall to some extent, therefore making new friends
becomes harder.
Date: Thu, 29 Feb 1996 11:02:41 -0500 From: Robert Subject: Re: Houdini
When I was an infant and had eczema, I was taken off of cows milk and
goats milk was substituted. That helped me (I have been told).
Date: Thu, 29 Feb 1996 17:26:46 -0600 From: Kristen Subject: Re: misc.
comments
Ann, I've had sinusitis for so many years I probably wouldn't know if
I had an infection or not--I just have constant runny nose and eyes. It's
a real irritant. Tears run down my face constantly, esp on very cold windy
days. And the constant itchy eyes makes for regular blurry vision. It's
a mess.
I don't know about you, but when I'm in the the middle of eczematoid
throes, I want nothing to do with people. Being included is the last thing
on my mind. I believe the skin thing came first, and the psychic woes are
a result of it.
I've always had sloughing ear canals. I keep trying to debride them,
esp right after a shower because the skin is softened. I've never had intense
itch in the ear canals, but they slough only when I'm also having scalp,
face and neck eczema flares. When I clean out the ear canals other times,
I end up with weeping and subsequent infection and then ear pain throughout.
Until I beat the infection down.
Date: Thu, 29 Feb 1996 17:52:32 -0600 From: Kristen Subject: Re: Re[2]:
bathing
Hi Robert, Welcome back. Good to hear you did so well in the sun. You
must not be an inveterate cortisone user. My skin doesn't like sun anymore--it
just gets mottled and burns in spots. Altho some antibiotics use precludes
exposure to sun also. Perhaps you would agree that the psyche is a big
factor in eczema now that you've come back to the ratrace.
I disagree with your conclusions about anger. I think it is better to
find ways to vent anger than bottle it up. I don't think it's very pleasureable
to "spout," altho it may be necessary. Sometimes blowing it off takes the
pressure off the "cooker." One's level of anger may be commensurate with
an incident; because sometimes anger is very justified. I don't like to
think that anger is bad just because it's anger. Venting it, and then thinking
thru the reasons for it may be more beneficial, along with deciding to
handle it differently. Rather than just complaining, better to take some
kind of action.
Anger has never been an acceptable emotion for women to show--doesn't
mean we don't have it. We've always just been taught a "lady" doesn't show
it. I discarded that tenet several years ago--it didn't suit me. I threw
off the placid mantle because I was tired of being treated like a doormat.
Women's behavior rarely fits the societal myths that bind us.
Date: Thu, 29 Feb 1996 22:47:39 -0500 From: Ralph Subject: Anger
Kristen, For about two years I have been going to a weekly therapy group
in which the leader occasionally suggests that someone do "anger work"
either in the group or at home. This consists of using a soft, padded bat
or a pillow to beat something like a bed or a couch. I tried this a few
times and to my surprise it really helped me feel better! Once in a while
now I pick up a pillow and beat something with it. I do this in private
(unless I'm at the therapy group) because other people usually feel scared
or disturbed by it.
 
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. |