Hallelujah! eczema_man
Every once in awhile you find a hidden gem within the crazy world wide web. After stumbling upon this post in the eczema thread on Reddit I was so moved.
Eczema_man was the content writer and I reached out to him to see if I could feature his post on my blog – to which he agreed. So first and foremost thank you Eczema_man for letting me repost this and for dropping some TRUTH and KNOWLEDGE about eczema.
Source – https://www.reddit.com/r/eczema/comments/8axmu0/my_experience_w_eczema/
My Experience w/ Eczema by Eczema_man
This is going to be a long post detailing everything I’ve learned about eczema over the past few years. I hope that it helps someone else. I also hope that people who have similar disease modalities teach me something (so please comment!).
DIAGNOSIS: I was diagnosed with atopic dermatitis at 30. As a kid, I had dry skin issues that cleared up, but not eczema.
I was diagnosed by 2 separate dermatologists. Reasons include family history of eczema / asthma, lifelong dry skin issues, hyper-linearity in the palms, infra-orbital folds (dennie-morgan folds) beneath the eyes… These are all things that a non-eczema person may have, but taken together with recurrent dermatitis and the diagnosis is atopic.
This means is that the root cause is believed to be genetic, and is the result of a filaggrin deficiency in the skin matrix. The deficiency leads to a weakened skin barrier. Really atopic dermatitis should be thought of as ‘weakened skin barrier disease’. This causes several things to happen. 1) Moisture is lost more readily. 2) Skin deforms and cracks more easily, particularly around areas where it is flexed commonly — the joints. 3) Things outside of you, penetrate your skin more easily and trigger an immune response.
Why didn’t I get eczema as a teenager or in my 20s? As I’ve learned, skin is weakest as a baby / small child (hence youthful breakouts of dry skin), strongest in teenage years / early 20s, and then weakens as you get older. So it makes sense for it to erupt in my 30s. Sadly it may get worse with time.
I went to an allergist and did a skin prick test just to be sure, and the only things I had an allergic reaction to were dust and roaches. I don’t believe that exposure to dust or roaches drive my symptoms, although dust may exacerbate some issues.
WHY DIAGNOSIS IS SO IMPORTANT — There are many people on this sub who never state their diagnosis. This is so ridiculous. Frankly I think everyone posting any piece of advice should be required to label their particular flavor of eczema with a flair or ‘undiagnosed’ if they are not sure.
Here are a few other things that can cause exzema that are NOT genetic:
1) Hypo or Hyperthyroidism — this is going to marked by a sluggish or overactive metabolism and will have a host of other symptoms. Once you treat the underlying thyroid issue, eczema most likely to go away.
2) Contact Dermatitis — Contact with very specific substances / chemicals will cause an IMMEDIATE breakout. Food Allergies could almost be considered a subset of contact dermatitis except with food.
3) Parasitic Dermatitis — what it sounds like.
4) Viral Dermatitis
There are numerous underlying causes of dermatitis. Before you offer advice or take advice, you really need to understand what the underlying dermatitis is of the person you are sharing information with.
In my case, I am 90% atopic, though I may have a 10% contact dermatitis issue with dust. It’s also important not to assume that only 1 thing drives your eczema.
TYPES OF ATOPIC DERMATITIS: Most (but not all) of you probably have atopic dermatitis. If you don’t know for sure, get a real diagnosis from a dermatologist otherwise you may be wasting a lot of time chasing treatments that won’t work for you.
Within the atopic dermatitis space, there are several underlying mechanisms for the disease.
In atopic people there often seems to be some kind of microbiome disruption. Underlying causes not fully understood, but one aspect of it deals with sweating. Normal people sweat more easily than atopic people, and their sweat is packed with certain kinds of peptides that kill bacteria.
Atopic people have a delayed onset of sweating during exercise, and sweat less at rest, and their bodies don’t release as many of these anti-microbial peptides.
In atopic people, one of three common disease modalities take place:
1) 60% Staph aureas — pattern: non-specific all over body, often around arms / legs. Often associated with fissure-ing, oozing, crusting of skin. If your skin discharges a fluid, most likely staph driven.
2) 30% Malasezzia — pattern: eczema particularly targeting the face or head. Basic strategy: topical antifungals / oral antifungals.
3) 10% — Airborne Proteins — pattern: facial dermatitis or the ‘inverse tee-shirt’… areas of your body not covered by clothing are exposed to environmental allergens. Often associated with asthma. Basic strategy is to wash face and exposed body a lot, cover with moisturizer after each washing. Reduce exposure to known allergens (i.e. dust).
It’s worth mentioning that there are a lot of people on this sub who seem to believe that food causes their dermatitis. I’ve gone to my local university library to research this among other things, and in the case of most atopic patients food allergies do not seem to play a role.
I don’t want to take away from anyone that cured their dermatitis by changing their diet, but it’s possible that they weren’t atopic to begin with. It’s also possible that somehow eating a different diet changed the microbiome on their skin — which may or may not work for you if that person lived in a completely different climate / environment / geographic area or has different gut flora with a different sort of prevalence of various bacteria.
I’m personally skeptical of a food based solution for atopic dermatitis (but would love to hear any comments on this from known atopic people).
STAPH DRIVEN ATOPIC DERMATITIS
I’m going to focus on staph, because it’s what I have and what I know. At this point, most of you probably have this as well — but a significant percentage (almost half) do not have this variant of the disease.
Disease vector as follows: You get dry or fissured skin because of your genetically weakened skin barrier. Staph Aureaus, naturally present on your skin, gets into these cracks and fissures. They generate something called super-antigens — which is basically a disproportionately large immune response. This triggers an intense itch. Scratching ensues. Fissures / dry skin becomes worse. Staph colonizes even more. It’s a terrible feedback loop.
My current thesis right now is that the key to beating staph driven eczema is removing as many avenues to your skin that the staph has as possible.
TREATMENT
I would love to tell you that I’ve solved this and am living happily symptom free. I am not. Like most of you, I live most of the the time with a constant annoying itch all over, and occasional flare-ups that push past annoyance into genuinely problematic, but which often resolve themselves within a week or two.
This part of the post details my current strategies for staph driven eczema, it may evolve. I certainly hope to learn more from other people’s experiences in the comments.
MOISTURIZERS — I haven’t found there to be a huge difference between different types of moisturizer. I’ve tried Cetaphil, Cerave, Eucerin, Aveeno, Triderm, Gold Bond, Vaseline, Coconut Oil, Burt’s Beeswax, Argan Oil, probably a couple others… All of them are effective to some extent. Some are like 20 – 30% more effective than others, but none of these are any kind of smoking gun that will magically cure the underlying disease.
A lot of research has pointed to ceramide based moisturizers as being the best solution for repairing the deficient skin barrier in atopic people. Ceramides mimic the natural lipids found in your skin, so the idea is that your skin can use them to repair itself. Almost all of the research has been conducted on a moisturizer called ‘Epiceram’ which is prescription only and is very expensive. Cerave has the closest formula to Epiceram, which is why it’s often prescribed by dermatologists.
I’ve personally found Cerave to cause serious dryness in areas where I previously did not have dryness. I have only my anecdotal situation to report, but I think my skin develops a dependency on Cerave and stops producing its own natural oils whenever I use it. Dryness kept escalating to a ridiculous point, and I have basically stopped using it after a few months each time I tried it. I also will sweat a milky white fluid out hours later if I’m exercising, which is gross, if I use Cerave. I didn’t have these problems with other moisturizers.
Personally I’ve found Cetaphil to be the best of the above without causing dryness dependencies, and minimizing the amount of weird sweat.
One problem though with any of the above moisturizers is that if you use your hands to scoop it out of jar, you’ve basically just colonized your moisturizer with Staph. You may think it’s not a big deal, but research studies have shown that after a few days as much as 20% of your moisturizer is colonized…
This means you are RUBBING STAPH into your weakened skin barrier if you are using these large tubs. I know… I did the same thing myself for a while.
So one hard rule of moisturizers — you must use one with a hand pump, or you must use a moisturizer that is naturally anti-bacterial.
These days I try to use virgin coconut oil, which has properties that kill Staph (and Malassezia).
Other natural oils (tea tree oil, oregano oil) also kill staph as shown by research.
Currently I use virgin coconut oil on my body and argan oil on my face. This way at least I know I’m not rubbing staph into my skin.
I find it does not keep me as well moisturized throughout the day as cetaphil, so I may switch back to cetaphil with a hand pump at some point.
OTHER PREVENTION
3 MINUTE RULE: As many of you know, after showering it’s important to get moisturizing coverage within 3 minutes to keep water on your skin and get optimal clinical results. Difficult to do with a hand pump, so also why I’m using coconut oil at the moment.
SHOWER FILTER: This is cheap ($30), very easy to install, and supposedly has shown improved clinical results in some people. Your water may expose you to some proteins that penetrate your skin and cause eczema. A shower filter can eliminate this.
FREQUENCY OF SHOWERING: Jury is out on whether to shower as little as possible, or shower a lot and moisturize (to lock in moisture). Studies have shown little difference in practice. Find what works for you.
HYPOALLERGENIC LAUNDRY DETERGENT: duh. And don’t use any kind of fabric softeners, not even the sheets, which have other chemicals. Stick to cotton and avoid synthetic fabrics, or ones washed in chemicals (non-iron shirts).
TOWELS, SHEETS, BEDCLOTHES: Must be washed at least once / week. If you remove staph from your body, but go to bed in staph infected clothes and bedsheets, you are just reinfecting yourself. I too viewed this as optional at one point, and am beginning to get in a routine where I wash these more regularly.
SALT WATER: One day when I was kayaking, I noticed that my arms had completely cleared up. It was the strangest thing, because my legs were still flared up with eczema. I’ve since learned that salt water somehow also kills staph.
I happen to live very close to the ocean, so it’s possible for me to take a dip at the beach without too much inconvenience. I try to go at least once per week, often more.
I have also bought sea salts for bathing, and have now started to take salt water baths.
When I initially go in the water, it’s ok, but after a few minutes, it’s as if someone has poured gasoline on all my eczema spots. It burns. Once I get out, wash the salt out, and towel off, it’s like something else.
I am completely symptom free for like 12 hours or more. I’ve noticed huge red spots completely disappear after jumping in the salt water.
I have come across a few controlled studies that found salt water reduced eczema in mice. What I think is happening here is that the salt water is able to penetrate much deeper layers of skin than your normal anti-bacterial ointments such as coconut oil. Being fully immersed in salt water for say 20 minutes, really starts to kill the staph.
I’ve only been doing regular salt water baths for a few weeks, but I’ve noticed a difference in my flare ups, and plan to continue doing them until I see any adverse effects.
FREQUENCY: Since your environment always has staph, it’s important to remember, that the staph is always attempting to recolonize your body. So you can’t just do something like wash your sheets once and call it a day. You also can’t take a salt water bath, but then hop into your old staph covered bed clothes. You have to keep up the fight by engaging in your routine with a regular frequency, and hitting all your disease vectors on the same night.
So if you take a salt water bath on a tuesday, you have got to wash your sheets / bath towels on the same day.
It is my hope that after a few more months of salt water, followed with washing linens, bedtime clothes, and using coconut oil as my go to moisturizer, I may have my eczema under tighter control.
Other treatments: There are a lot of other treatments that people on this sub have tried. I’ve never tried stuff like UV light theraphy, or probiotic creams… so can’t comment on that. One thing that has looked promising is potassium permanganate baths, which someone else commented helped them immensely. It’s prescribed by dermatologists in the worst case of hand eczema. It’s something I would bring up to my dermatologist if I need to visit again.
TOPICAL STERIODS DO NOT WORK LONG TERM
Treating eczema with topical steroids is in a sense like treating pneumonia with prednisone. It alleviates the symptoms, and from the perspective of the patient seems to treat the symptoms, but in reality it does absolutely nothing for the underlying causes, and actually makes them worse.
What topical steroids do is weaken the immune system. So the immune response to the various bacteria / fungus penetrating the microbiome goes away — the redness, the itchiness, the oozing…
But the topical steroids worsen skin barrier significantly, and since the immune system is impaired, the bacteria / fungus penetrates deeper. And so after the initial improvement, the long-term symptoms actually become worse.
R/ECZEMA
I’m glad that this sub exists, but I’m generally disappointed with the quality of content. We need to up our game ppl and stop posting stupid memes about our skin care routines. Save that for r/skincareaddiction. We can do so much better.
State your particular diagnosis or thesis as to what causes your eczema. If you are not sure, start there and let people on this sub help point you to root causes.
I’d be interested in what other treatments staph driven atopic people use.
Also very interested in people in their 40s, 50s, 60s… ? Does it get worse as you get older? Do skin infections get more persistent? Interested to know how disease progresses (or if you have found techniques to manage it) for others who have staph driven eczema.
Thanks for reading this… Hope it helped someone.
TLDR — yeah, no way. Each section has headers, hopefully useful for those who don’t have time to read this entire post.