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Don’t Forget the Soap: A SolveEczema.org Perspective on “The Farm Effect” and Eczema

Photo of a Cow in Switzerland

Swiss Cows

Until I can finish a book or publish papers, I really can’t do this topic justice. And I’m not really sure users of my site (SolveEczema.org) really need much explanation. Once people really read and understand the site, and put the strategies into practice, what I’m about to say is pretty obvious.

A lot has been written in recent years about the “Farm Effect” — an astute observation made by pioneering eczema/hygiene hypothesis researchers that people who live on farms tend to have less eczema than people who don’t. This led to speculation about whether the reason had to do with dirt or microorganism exposure.

While I am not discounting microbial involvement — please see SolveEczema.org discussions for a different take on probiotics and eczema, and the last part of this very short paper that I wrote https://thewinnower.com/papers/3412-abnormal-ampli-cation-observations-from-applying-the-engineering-method-to-solving-eczema-and-atopic-disease — I also think people are making this far too complicated (with far too much contradictory evidence that isn’t explained).

Take for example the popular interpretations of this well-done study from 2012:
http://www.jacionline.org/article/S0091-6749(12)00519-2/fulltext

Researchers found a far higher rate of allergy, asthma, and eczema among children aged 6-12 who were from families of Swiss non-farmers than Swiss farmers. They also found the Swiss farmers had a higher rate than Amish in the US (who tend to be farmers, though not all). Researchers may have chosen the comparison with Amish in the US because they originally came from Switzerland, and may be genetically similar, although the comparison would have been even more useful if they had also surveyed the Amish-like communities still in Switzerland.

http://www.reuters.com/article/us-kidsallergies-idUSBRE8431J920120504
“As for why the Amish kids have even lower allergy and asthma rates than the other farming kids, “that piece of the puzzle we really haven’t explained,” [Indiana allergist who treats Amish patients] Holbreich told Reuters Health.”

So, to summarize: The Amish had the lowest rates of allergy, asthma, and eczema. The Swiss farmers had less allergic diseases than non-farmer general population, but higher than the Amish. This relative difference was true also for allergic sensitization to various allergens on testing.

The significant difference between the Amish and the farm families suggests the need to consider other influences.

Swiss cows everywhere and up close in Switzerland

Swiss cows everywhere and up close in Switzerland

Additionally, Switzerland is such a small country where farming and the farming community is simply not that isolated from the rest of the nation. It’s nothing like the US where you might have to drive a hundred miles to see a cow (or a farmer).

Swiss horses in the path

Swiss horses in the path

While Switzerland is an extremely clean country, let’s face it, the dairy industry is pretty important — it’s hard not to notice that there are a great many animals and a great many flies because dairy is so well integrated into the landscape. I just can’t see making a strong case that any population is that well isolated from any other there microbially.

swiss goat

Swiss goats are everywhere, too.

But in terms of lifestyle, the general Swiss population of non-farmers is using the same kinds of new surfactants that everyone else in the industrialized world is using where eczema and asthma are so high. They spend more time in homes breathing the detergent “dust” from this use than do farmers, who spend more time outdoors.

Swiss farmers may or may not be using less of such products.  While I doubt they are making their own soap anymore — though I do not know — they do spend more time outdoors, away from breathing such dusts. Recall that these substances increase antigen penetration of membranes, including lung, i.e., to the immune system, it’s as if there is more allergen in the environment.

In the US, farming communities gave up making their own soap later than everyone else. In some farming communities, soapmaking remains a strong tradition. The Amish are one of those communities, probably the most significantly so. Although acceptance of the modern can vary among Amish communities, there is a strong tradition of soapmaking among the Amish. This essay about Amish life in the 19th century (search on the word “soap”)  describes the process.  While it can be truly difficult to get specific data, it’s very unlikely that this tradition has changed much, if at all.

This relatively new environmental factor — the use of these highly hydrophilic modern surfactants that I believe are amplifying “normal” allergic processes — has a much more consistent and close ecological link to allergy, asthma, and eczema increases than any of the other explanations, across time and geography. This factor should be included in these types of studies, because of the potential to reconcile so much seemingly contradictory evidence, not just when it comes to the “Farm Effect”, but also when it comes to the research on allergy and exposure to pets like dogs and cats (especially the contradictory evidence when it comes to cats), or studies of allergy in households that handwash versus dishwasher wash the dishes. Getting into details is a long discussion for another day. However, because these surfactants can so powerfully influence human membranes in a way that is known and directly speaks to allergy, I think it’s too bad the studies don’t include anything at all about this factor. Especially since, as in the study above, there is likely to be a big difference in usage between the populations.

The SolveEczema.org perspective reconciles the major inconsistencies in the research of most of these different factors, such as the Farm Effect. And the SolveEczema.org strategies, from experience, happen to lead to dramatic reduction of asthma and allergies in concert with eczema amelioration, not just for the child with eczema, but everyone in the household. And it doesn’t require getting dirty or rolling around in cow or horse … um … microbes.

 

This room was one part of a structure also housing a mountain café, where day hikers frequently stop for tea or hot cocoa. Note the nearly brand new calf.

This room was one part of a structure also housing a mountain café, where day hikers frequently stop for tea or hot cocoa. Note the nearly brand new calf.  OK – this isn’t a common sight in Switzerland – but cows (and their microbes) are.

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Sharing an Asthma Success Story from Canada

I still regularly hear from people who experience asthma improvements from implementing the SolveEczema site strategies.  I  would like to share a letter I received a year ago from Julie Leung, a mom in Canada who implemented SolveEczema.org strategies to solve her children’s eczema, and with whom I have been corresponding.  She describes the benefit to her own asthma as an adult.  I’ve heard this a lot, the benefits even to those who don’t have eczema, particularly to asthma and skin quality.  I thought her description was very powerful.

Baby with asthma inhaler

“Baby In Hospital” by Sura Nualpradid Freedigitalphotos.net

Even though people breathe in a great deal of detergent in “dust” these days because the dust in most home indoor environments comes largely from hair, skin cells, lint, I have always downplayed the potential benefits to asthma and other lung conditions pending research validation, and because I do not believe environmental detergents (as defined on my site) are the underlying cause of asthma, but an amplifier, abnormally influencing the membrane and the normal function of the immune system (for the reasons discussed on SolveEczema.org).  Additionally, unlike with eczema, there is  no way to give people simple GRAS (generally regarded as safe) recommendations that provide the kind of direct feedback that people with eczema experience when they properly implement SolveEczema strategies.  Until there are studies, it’s much harder to convince people to do what is necessary if they don’t have the immediate feedback of those with eczema.  Nevertheless, because so many people describe their improvements, I feel it’s important to share what is possible.

First, the caveats:

Photo by Arvind Balaraman Freedigitalphotos.com

Photo by Arvind Balaraman Freedigitalphotos.net

I am posting this to help people who are proactive and looking for better answers in their own health journeys.  It is not intended in any way as medical advice (as everyone who reads my site knows, I am not a doctor), nor intended to replace the relationship between doctor and patient.  In fact, please only read further if you have a good relationship with a doctor managing your asthma.  Implementing the strategies from SolveEczema.org is not trivial and requires understanding a very different perspective.  Things can go wrong, too.  A relationship with a physician is essential.  Implementing the strategies may help, but given the range of contributors to asthma, I do not want anyone to think I am suggesting a replacement for sound medical advice, follow up, and care.  Asthma medications can save lives.  Implementing the site strategies for asthma takes time, on the order of months, and unfortunately can be all too quickly reversed because of modern environmental influences that are sometimes out of people’s control.  Do NOT make changes to care based on a website (mine or anyone else’s) without thoroughly understanding and consulting with your physician.  Only make changes per SolveEczema if you’re willing to understand and do it safely, with your doctor in the loop.

Here is the letter [story and personal photos from Julie Leung, except where noted, all rights reserved, used with permission].  Many thanks to Julie for writing and being willing to share.  I would add that in terms of what Julie did, described below, in pushing herself to see how much her lungs had improved — that’s for information and is a “Do not try this at home” FYI only!  She is a very detail-oriented, highly analytical person with a science background, was (and is) actively in asthma medical care and management, with a history of excellent physical fitness and those adventure sports.  I recommend against readers “testing” improvements that way!:

Dear AJ,

In addition to the successes we’ve had with our children’s eczema, I wanted to share the surprisingly positive impact on my long-standing asthma.  I hope my testimony, so to speak, might help someone else.

When my husband and I began implementing the framework given on your site, I was on a year long maternity leave from work after the birth of our daughter and was spending most of my time in our detergent-free home.  By January of 2013, I discovered that my asthma had gone away completely and it seemed correlated to the detergent removal in our home.

Stop Asthma by Stuart Miles Freedigitalphotos.net

Stop Asthma by Stuart Miles Freedigitalphotos.net

From what I had already read on your site, my asthma disappearing was not an altogether unexpected result, but the extent of the improvement was wholly astonishing, and felt nearly miraculous.  I later returned to work and therefore to regular daily detergent exposure outside my home, and the resulting return of my asthma has convinced me of the significant impact that detergents have on my asthma.  What it also showed me was that I can have control over my well-being in a way I never would have thought possible before reading your site.

I’ve had asthma since I was a teenager, and in my adulthood, it came “under control” through regular use of steroid inhalers. Consistent with widely-accepted asthma management protocol, I was told that need of a “quick response” inhaler (like Ventolin) more than a few times a week meant my asthma was “out of control” and needed to be quieted by increasing the frequency and/or dosage of my steroid inhaler.

You’d pointed out to me that “steroid fears” are well-documented in the medical literature, and I found myself reflected in those profiles — I have always felt uneasy about taking so much steroid.  Over the years, I’ve constantly tried to use as little as possible, or wean myself off them completely.  Off, or on an inappropriately low dosage of, the drugs, my asthma is fine until I get a cold or exercise above my typical intensity. Then, inevitably suffering from constant wheezing that isn’t relieved by my “quick response” inhaler, I begrudgingly ramp up my steroid usage and maintain this dosage for at least 2 weeks, until my asthma once again comes under control.

When I found your site, we implemented the changes in our household to help our children, but I considered that I might also benefit from them.  I stopped taking my steroid inhalers, almost subconsciously, at the same time we started detergent removal from our home.  It is important to note that there was a period of about 9 months where I was no longer regularly exposed to detergents because I was spending almost all my time in my home because I was on maternity leave and also trying to minimize my baby’s exposure to detergents while problem-solving her eczema.

Within 4 months of starting detergent removal, I started to feel that I was perhaps not experiencing the same depth or sensitivity of asthma as I did prior. I started to tell a few people tentatively, always clarifying that I still thought I had asthma, but it seemed to be better. I seemed more resistant to triggers, didn’t wheeze as easily, or it took more physical exertion to have the asthma show up; when it did, it didn’t linger as long, and didn’t seem to need the short-acting inhaler to resolve.

Snowshoeing Kananaskis - Mtn scene7 months after starting detergent removal, I was invited on a snowshoeing trip in the mountains. The trip was in an area in which I used to cross-country ski frequently a number of years ago, and so my body was generally familiar with the terrain, conditions and weather.  Back when I was cross-country skiing regularly, I was exceptionally fit and this seemed to also help mitigate the asthma, raising the threshold of physical exertion before wheezing.  However, I always got asthma while skiing, and I always had to stop and take a puff or two of my short-acting inhaler, typically within 5 minutes of starting to cross-country ski, and often again later on in my 4-6 hour workout.  At the time of the snowshoeing trip, I had every reason to expect to be wheezy.  Not only had I become relatively out of shape, but at this point I hadn’t taken any inhalers for at least 6 months.

Snowshoeing Kananaskis - signsI brought my inhaler along just in case, but I was really curious to see whether I’d be asthmatic or not.  After the initial steps, getting into the groove, I listened to my body, tentatively, half expecting to need my inhaler.  No wheezing, not too much tightness in the chest.  So far so good.  I kept on.  And on.  And on. 2.5 hours into the trip, I suddenly realized, that despite climbing up and down a canyon, breaking through undisturbed snow at times, and talking while walking, I hadn’t needed my inhaler.

Snowshoeing Kananaskis - walking 2At the point of my no-asthma discovery, everyone on the trip was tired, but I had lots of energy because I was so excited!  I wanted to try to “incite” the asthma by pushing myself to the limits of physical exertion. I didn’t think I would have many other chances to “test” the condition of my asthma. I nearly ran up a 90 foot incline to the top of a dam, so fast that it was a few minutes before anyone else in our party caught up to me after I stopped. I experienced no wheezing! I could not remember the last time I exercised hard, started breathing hard, and did not feel the familiar tightening of my chest and wheezing coming on. I was elated!

Less than a month after that first trip, I went on another snoeshowing trip in the mountains where the level of activity was closer to what I’d regularly done when younger.  4 hours of constant movement and some chatting with my companions through the mountain landscape in cold weather yielded no wheezing whatsoever.  Again, I was floored.

Less than a month after that trip, my maternity leave ended and I returned to work and into a detergent-filled environment.  Within 4 days of returning to work, I ran for the bus for 15 seconds and had the most severe asthma attack I’d experienced in over a year:  the familiar sharp, stabbing pain in my chest, the wheezing and compressed lung capacity, and the taste of blood in my lungs — all symptoms typical of my asthma attacks.

As you’ve pointed out to me during problem-solving for my children, scientists often test for causation by removing the stimulus they hypothesize is causing an issue, then reintroducing the stimulus.  To show causation, it’s not enough that the issue resolves when the stimulus is removed; the issue needs to return when the stimulus is re-introduced.  As I reflect, I realize that’s precisely what I’ve inadvertently tested — when detergent are absent, my asthma disappears; re-introduce detergents, my asthma re-appears.

When I returned to work, I was in a detergent-filled environment for about 10-12 hours a day, 5 days a week.  I eventually needed my steroid inhalers to control my asthma again, but only needed about a quarter of my previous dose for control.  Over time, I ratcheted my dose down and used the steroid inhaler so infrequently that I was not considered to have my asthma under “drug control”.  Eventually, my asthma settled to a place where it was definitely worse than while I was on maternity leave, but better than the symptoms I’d had my entire life. Overall, compared to before detergent removal, it took more or longer physical exertion or exposure to allergens for my asthma to show up, the symptoms were not as severe when it did show up, and it required less drug to control.

In the summer of 2014, I went for spirometry testing.  At the time, I was using next to no drug and was feeling some frequent, general chest tightness, as I had since returning to work.  The respiratory therapist took 3 different measurements.  Surprisingly, she indicated that the numbers from all tests were very good and said that if she saw the numbers alone, without knowledge of my clinical history of long-term asthma, she would think that the patient did not have asthma!  In her report to my doctor, she indicated,  “Asthma is under control”, despite the fact that she and I both agreed I wasn’t taking enough steroid to consider my asthma as under control from drugs!  The respirologist who reviewed my spirometry results seemed to question whether the asthma diagnosis was even correct, something that had never happened before despite decades of treatment.

I know that I’m still an asthma sufferer, and, with the “right” conditions (such as long enough exposure to animals I’m allergic to, or if I’m in an really detergent-y environment for a long enough time), I will “express” my asthma.  But, I feel also that the clearing of detergents and detergent-laden dusts in my home environment has allowed my lungs to heal in a way that has significantly increased my thresholds to reacting in my lungs, much like it has for my daughter on her skin.  And, my results, coupled with observations I’ve made about my son, strongly indicate that I may also have delayed or perhaps even avoided the onset of asthma, or, at the very least, potentially reduced its severity if it does develop, in my children.

I hope that my story encourages those that are considering detergent removal or those who have already done so and are hard at work problem-solving for their families.  For as depressing as it is that our world is now inundated with chemicals that may have caused such a great degree of unnecessary sickness and suffering, it is hopeful that there is still something we can do about it.

-Julie Leung

 

To read more about Julie Leung’s allergy journey, or to find the list of products she uses in Canada, please see:   http://allergyjourney.com

Happy Holidays — Best Wishes for a Healthy, Eczema-free (and Asthma-free) New Year!

A.J. Lumsdaine
SolveEczema.org

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Update #1: Citizen Science and Celebrating the Perfection of Imperfection

Happy Holidays!

I can’t believe so much time has passed since my last post. Much has happened. (Much of what I learned that allowed me to do this — SolveEczema.org — came from many lessons in my own health journey, which continues. Please pardon my slowness!)

Last February, I attended the first annual conference of the Citizen Science Association, held in San Jose, California. It was a truly energizing and awesome experience! I learned so much from true pioneers in science from all walks of life.

I shared a poster presentation about my experience with SolveEczema.org, which can be downloaded from the Citizen Science Association (CSA) conference channel on F1000.com. (The F1000 site may not load the posters properly, please contact me or their webmaster if you are not able to view or download it.)
http://f1000research.com/posters/1097570

You can see what the poster looks like on the CSA channel, which is also worth browsing for other presentations:
http://f1000research.com/channels/citzsciassoc?selectedDomain=POSTERS&searchTerm=lumsdaine

Since publishing that poster, I have been trying to publish a scientific paper for peer review. One roadblock I expected, but was surprised to find even more from open source publication outlets, is that everything about this is simply too new and different. The observations and solutions of SolveEczema resulted from the engineering method, which makes use of heuristics. The goal is to most optimally solve a problem, within available resources (see my poster for more). Although I thought about how to do so for a long time myself, there is no way to overlay a traditional study design.  So to editors of scientific journals, I may as well be trying to publish Sunday morning cartoons. But forcing this into a traditional format will destroy what allowed me to find a solution in the first place.

When the cause of a health condition is an infection, different people may have different symptoms, and there may be a range of symptoms and manifestations across a population of people with the same disease, but ultimately the solution involves finding the one thing in common, the infectious agent, and almost ignoring that range of differences. A traditional study design is adequate to validate the treatment: it’s possible to give everyone a single treatment, or small variations on a single treatment, and a placebo to mimic treatment for comparison.

When the cause of a health condition is environmental — as researchers basically agree the modern eczema/asthma epidemic is fundamentally — then the different symptoms people have, the range of manifestations across a population of sufferers, are the result in every case of different environmental conditions and exposures, different genetics, and different immunological states. There may be a common thread or solution, but even once that is found, actually solving the problem for every individual inherently involves problem solving in the context of each person’s exposures, genes, and health status. The differences between people for an infectious disease cause are, in some ways, almost beside the point, whereas in the environmental health cause, they are the point.

The engineering method, which uses heuristics, is well suited to finding the environmental cause in the first place, and is essential for validating the solution, because it’s not possible to validate a proposed solution through a traditional double-blind study in which every person does or uses the same exact treatment. There is no way to set up a treatment or series of steps for everyone to follow exactly and get the same results as individuals problem-solving in their own environments using a well-developed heuristic tool to do whatever it takes to get the best outcome. What is held constant in each case is not the treatment, but the aimed-for outcome (by the engineering method), which by current treatment validation paradigms (using the scientific method) isn’t considered possible to do. The scientific method, in this instance, will never be an adequate problem-solving tool to achieve what we consider cure or solution.  Where a heuristic solution is applied, when a case is not resolved by properly applying the heuristic, then the heuristic (not the aimed-for outcome of problem solving) is revised or expanded to encompass the outlier circumstance.

In publishing, not only the solution and the revision of the hygiene hypothesis, plus all the novel observations I am proposing, need peer review and validation, but also the use of heuristics in disease problem solving and treatment. Using the engineering method in medical problem solving and treatment, basically, needs and deserves peer review.  (As always, stay tuned.)

-A.J. Lumsdaine

 

P.S.  Come to think of it, was this “citizen science” or was it “citizen engineering”?….

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Letter to a Medical Student — What % of Cases are From Detergent? — Part 4

Final installment of a letter to a medical student.  Read the rest of the letter:
 [Part 1] [Part 2] [Part 3]

To the question of estimating what percentage of the eczema/atopy problem relates to detergents — reasonably assessing what percentage of a problem relates to one thing or another implies a broad understanding of the problem across the population. As you are probably aware because it is discussed honestly as a shortcoming in most prevalence studies, to some extent, everyone dealing with the problem of allergy and eczema sees their own little slice, including physicians in virtually all related specialties. Not everyone with eczema will see a doctor, and even if they do, they won’t necessarily continue.

In one research study from an obstetrical hospital in the UK, they managed to get over 5,000 parents to fill out detailed health questionnaires to document the association of parental eczema, hayfever, and asthma, with AD in their infants [1]. The families were coming in to the hospital related to childbirth, not an illness, so the cross-section of patients was more representative than one would find in a dermatologic or even pediatric practice.

When I solved my infant’s eczema, I had something no researcher could dream of, 24/7 access/contact with my child for months, and once we had solved the problem for our son, interactions across a representative community based on personal relationships and connections to thousands of families through various baby- and family-related social spheres (in-person and electronic). Many people asked for help when they saw what we had done for our son, and word spread. It’s the reason I had to start writing, because dealing with people individually — even just with friends — was too time consuming, though I learned a great deal.

When I first published a simple article, I received hundreds of emails in just the first weeks. Last year alone, my website had around 60,000 unique users and the blog tens of thousands of visits, and use continues to rise. Interactions in community/family spheres over the years, especially in the beginning, represented a pretty broad cross-section, and also helped inform my ideas about which modulators likely dominate the problem.

Even my experience with my website today — versus 10 years ago — is mainly with a subset of sufferers, because I try very hard only to address people already interested in taking such steps, willing to understand the information and work with their own physician in the loop. Given the relative newness of my ideas and “citizen science” on the whole, and since the strategies can be a lot of work under the circumstances, I can’t address everyone, even though everyone would likely benefit to some degree. The subset of people I’ve seen on a discussion board set up by a parent user (http://sammysskin.blogspot.com) seems to be different than my site’s typical user profile, too.

I’m quite certain the subset I see through my site is different than one would see in a medical clinic, too — frankly, many people find the site because they are fed up with the accepted allopathic approach. I usually try to help them see how they need to work with their doctors, because having qualified medical advice is vital (especially for safety and infections, really for anything medical), but I can understand people’s frustration.

Although my site strategies have not gone through a traditional study and publication cycle, I would note that neither have the typical personal product and washing recommendations most physicians make to desperate parents already, in fact when I looked, I found more support for recommending washing with traditional alkaline soaps than washing with surfactants that aren’t soap.* The recommendation to avoid “soap” (when “soap” really was soap) appears to have been borne of the marketing sector, not solid medical science, and in fact for a period, physicians recommended soaps and soap flakes over detergents for sensitive people and infants.

*It can be very tricky to find such studies because you have to assess whether researchers define “soap” and “detergent” the same way as I do. Soap and detergent are not technically precise terms, so it is often difficult to know what a given researcher means unless a paper is very specific. I hope at a minimum, our discussion highlights the need for more precise definitions of various chemicals and chemical classes in skin research.

Many people come to my site because they don’t want to just cover up the problem or use steroids. Many are searching for answers because the standard treatments don’t work anymore, or never worked for them, or people find them too burdensome or their quality of life too compromised. Unpredictability and sense of powerlessness degrade quality of life in eczema [2]. As the chief executive of the National Eczema Society (UK) reported, “… those of us who live with eczema are desperate for a cure — or at least for treatments better than those available to date.” [4]

As I’m sure you are also aware, with topical corticosteroids that are a mainstay of eczema treatment, “steroid fears” are very real and contribute to a high level of noncompliance in treatment regardless of disease severity. [2] [3]

Unfortunately, the response per papers on the subject of “steroid fears” seems to be to advise physicians to downplay the risks and consequences, a problematic recommendation from the standpoint of informed consent. Being real here, I hear from the parents who are furious with their doctors for downplaying the side effects of steroids or for recommending them even while the treatments no longer control the eczema — doctors aren’t seeing those patients. I think downplaying risks and consequences, particularly of a treatment that doesn’t fundamentally cure a condition, ultimately backfires and hurts patient-physician relationships and trust in the long run.

Compliance with traditional treatment regimens can be poor, and declines over time even when patients show objective benefits and have education about their treatment. [ref] Investigators don’t seem to understand that keeping up with such a persistent regimen is burdensome and a constant reminder of the eczema as a personal “defect,” even when it helps reduce symptoms. Fear of flares remains a constant psychological burden.

And, there is a big difference in perception between a child getting treatment to keep a problem under control that is perceived as a defect in them, and getting an environmental problem under control where the problem is then perceived as external. Even, I have to add, if the parent employing the environmental strategies also uses some steroid treatment as part of the regimen, at least there is a sense that it’s a choice and the steroid use can be limited.

Even while many studies show a parent/patient reluctance to use corticosteroids, others show parents are willing to try alternatives like special diets, extra laundry or bathing, or special clothing. [ref]

Many people come to my site because they don’t want to just cover up the problem or use steroids. It’s not just because of “fears,” whether justified or not. Again, there is a huge difference between treating someone for a problem to keep it under control, and giving them a real solution that let’s them understand and lead their lives without treatment. There is a huge difference between being at the mercy of unpredictable flares, and being able to fairly reliably predict and head off or end outbreaks. I am regularly thanked when parents get control of the outbreaks and no longer see the outbreaks as random, even if they still have to deal with them. It makes a great difference to parents to understand that the environment, not their children, is what is “defective.”

When an environmental factor is at play in a genetically susceptible population, it does not mean that the associated genes are an inherent weakness. I make this analogy on one of my blog posts: If we suddenly began making doorways shorter, so that 20% of the population had to stoop to go through, pretty soon some percentage of people would experience more frequent head injuries. While it would be possible to find and correlate genes with such injuries (tallness genes, for one), and maybe even look for therapies to suppress growth so these genetically susceptible people didn’t get so tall, ultimately the best approach is to raise the door height back to what it was.

For the children’s sense of wellbeing in growing up, it’s important for them to see themselves as whole and not fragile, even if they have to be more aware of dangers in the modern environment (for now). Many parents express gratitude once they “get” it, once they can see a connection between exposures and what happens to their child’s skin and health, even if they haven’t completely eliminated the breakouts yet.

One of the recurring themes I hear from parents is gratitude for being able to see their children with normal baby skin. You probably won’t understand this fully until you are a mother yourself, but I just received an email from a mother who used the site to resolve her first child’s horrendous eczema — only finding the site when the child was a toddler — telling me how every day she marvels at her second child’s baby skin, and how she never once had that experience when her first child was an infant. A solution to this problem is not just the absence of the suffering of eczema (and atopic manifestations like asthma), or the appropriate training of immature immune systems, it is restoring to these families, to these children, the blessings of normality they really deserve.

As you have rightly pointed out, funding for dermatological research can be a problem, especially for usually non-life-threatening problems like eczema that are perceived as less burdensome than they really are. Funding mostly comes from companies looking for monetizable treatments rather than reasons to realize these children don’t actually need treatment at all. Open source tools may be the answer, but as yet there is no accepted framework for anything equivalent to peer review and acceptance of open source innovations. However, from the standpoint of using what is GRAS to help patients now, I don’t think it’s really necessary to wait for either.

If you have patients with eczema looking for alternatives, it seems to me there is reasonable basis to suggest environmental strategies as a first line, if patients have concerns about steroids and are looking for that kind of strategy. Just as newly pregnant women are typically given a packet on important resources during pregnancies by their OB’s, a similar packet of already-uncontroversial resources for eczema patients might be helpful:

1) Doctors have for decades made recommendations regarding washing and personal care products, so this is nothing new. My site is already being recommended to patients by doctors, and is a problem-solving heuristic mainly involving healthy GRAS environmental strategies. (The article AANMA did in 2006 passed muster with a large illustrious medical board before they published it.) If you read and consider my site a useful resource, consider including a page listing the link as one possible resource.

2) Good allergists typically already make reasonable home environmental recommendations, such as allergen control (including for mold and dust mites), in the way Dr. Brazelton describes in his book Touchpoints. I was surprised in our experience at how little advance notice or preventive advice most people with eczema get on the whole issue of atopy and allergy, until those problems become serious.

There is considerable mainstream research to support general allergy-control measures in a home, yet I am surprised by how often people have no idea of the most effective and simple steps they can take to improve indoor environments. I thought I was pretty knowledgeable, and yet I, too, was surprised by what I DIDN’T know. The US EPA publishes many helpful guides, written for average consumers, on how to maintain healthy homes and solve typical home environmental health problems (two examples below), perhaps including the best links on a page of resources or even printing out the best ones would help:

http://www.epa.gov/region1/healthyhomes/pdfs/healthyhomes.pdf
http://www.epa.gov/mold/moldguide.html

3) Many physicians already recommend trying safe elimination diets since the list of typically allergenic foods is short and well-known. Giving parents a guide listing specific professionals such as nutritionists within the local medical organization, or generally recommending which specialists or written works could guide a safe and effective elimination diet would be better than just suggesting parents try it or eliminate certain foods.

4) Since the research came out, many physicians also recommend trying additional measures like probiotics. Many people then go out and try to find products that work but give up because of hurdles such as finding a dizzying array of products with other allergens in them, etc. Including a list of acceptable products or even coupons for the ones that have the fewest allergens could help people take these steps along with the others.

5) Until more research is done, where steroid treatment is desirable or necessary AND it is possible to recommend products without added detergents or allergens in them — such as topical steroid products without detergents (or compounded in Aquaphor) — it may be helpful to simply offer patients a choice of such products.

Having a packet of resources patients can look at and use their own way is, in my experience, more helpful than just making verbal suggestions. I think it also makes patients more likely to involve their doctors when they really need to.

I realize that was a long and complex answer. I felt I had to come up with a best estimate because people asked so frequently. I’m sure I’ve forgotten some of the rationale by now, but the above is much of it. I don’t think most people expected anything like a precise answer — and certainly, my estimate is pretty broad — rather, they needed an idea that trying the site strategies stood a good chance of being worth the effort. I don’t think there’s one single answer for everyone, as my letter describes, but I do think the problem-solving heuristic can be helpful — often exceedingly so — for a majority.

I hear from quite a few doctors, but I don’t hear from many medical students. To be honest, there seems to be a direct correlation between experience level/position, and willingness to review and recommend my site. Very experienced doctors seem to be unfazed by the idea of using a resource like this once they have read it and see what it is. It’s rare for a medical student to reach out as you have just done.

I hope you will continue to think about the idea of open-source innovation in dermatology, since conducting crowdsourced studies could solve funding limitations by essentially distributing costs in large clinical trials. I wish you the best in your professional life, and hope your spirit of independence and strong intellectual curiosity will help your patients as much as it will surely lead to success in whatever research area you pursue.

A.J. Lumsdaine

 

P.S. My site experience is a quintessential open-source innovation story. I believe many seemingly intractable disease problems could be solved given accepted frameworks for assessing and disseminating open source innovations in medicine. Beyond eczema, I have specific, more serious problems in mind but cannot write about them in the same way as they cannot be addressed from a purely environmental standpoint and I am not a doctor. And, as a non-physician outside of accepted medical circles, I have as yet no clear outlet for open-source review, acceptance, and dissemination of such proposals that would be equivalent to traditional peer review.

I believe certain medical problems have gone unsolved not because all of them need revolutionary new science — eczema certainly doesn’t need it and it’s not alone — but they’ve lacked the application of modern technical problem solving, and have suffered from low expectations for results characteristic of paradigms on their last legs.

When I still had some hope of finding funding for this, or even entering for some kind of innovation/solutions prize, I found pretty much everyone offering such funding/prizes has fairly low expectations in regards to actually curing diseases. Prizes are offered for measurement instruments, or tools for research, not for curing diseases anymore. Even the X-Prize people are offering a big prize for a measurement instrument like a Star Trek tricorder — which, don’t get me wrong, is WAY cool — but not a single offer of a prize to cure any currently-deemed incurable disease.

In many ways, medical students, especially medical students with health problems of their own, have the potential to be the greatest innovators in a modern open-source context. I have no doubt such frameworks will come to fruition. When they do, expect nothing less than a revolution in medical problem-solving. I hope it will help you and your generation to revolutionize medicine beyond our dearest imaginings.

 

[1] Wadonda-Kabondo, N., J. A. C. Sterne, J. Golding, C. T. C. Kennedy, C. B. Archer, and M. G. S. Dunnill. “Association of Parental Eczema, Hayfever, and Asthma with Atopic Dermatitis in Infancy: Birth Cohort Study.” Archives of Disease in Childhood 89.10 (2004): 917-21. Print.

[2] Zuberbier, Torsten, Seth J. Orlow, Amy S. Paller, Alain Taïeb, Roger Allen, José M. Hernanz-Hermosa, Jorge Ocampo-Candiani, Margaret Cox, Joanne Langeraar, and Jan C. Simon. “Patient Perspectives on the Management of Atopic Dermatitis.” Journal of Allergy and Clinical Immunology 118.1 (2006): 226-32. Print.

[3] Anderson, P. Chris, and James G. Dinulos. “Atopic Dermatitis and Alternative Management Strategies.” Current Opinion in Pediatrics 21.1 (2009): 131-38. Print.

[4] Lapsley, P. “Itching for a Solution.” Bmj 330.7490 (2005): 522. Web.

 

This work by A.J. Lumsdaine is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License

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Favorite posts and annual autumn-eczema reminder

Autumn by Monika Lumsdaine

Autumn – by Monika Lumsdaine
A favorite photo

Every year when the weather turns, thresholds to reacting drop along with declining temperatures and humidity.

The change can be hardest of all on people who have recently solved their child’s eczema or are in the process, because it can suddenly seem as if something else is causing eczema to resurge.

Especially for those whose children are age 3 or younger, it’s worth a re-read of my first post on Autumn Eczema.

Also, because kids with eczema often have more allergy issues, I’ve posted our family’s best cold and cough home remedy (which I’ve moved to its own page).

 

And while I’m at it, here is a compendium of my very favorite posts [updated December 2015]:

Some summaries – what SolveEczema.org is all about:

My favorite FYI’s:

Posts about finding soaps and non-detergent products

What some other people have done (or not):

My very favorite Off-Topic Posts:

 

Creative Commons License
Autumn by Monika Lumsdaine is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

Eczema Baby Scratching – Now Not Scratching

http://www.indiegogo.com/solveeczema
Eczema itches. Quality of life studies say even mild eczema can be as miserable as severe eczema, because no one sleeps. Babies don’t sleep, siblings don’t sleep, parents don’t sleep. It affects health and development. None of the studies quite hits home like this 2-minute video, sent to me by a mom who used the web site to help her son. I’ve edited out a long segment where baby Zack just digs at his neck, but it’s still hard to watch. Stick with it ’til the “after” photo, though (note: it’s silent, there’s no music):

Please help me to help more babies like this one. If you can, please make a donation to my crowdfunding project. The hope is to fund a medical study, but that level of funding would take high visibility on the crowdfunding website. If you can’t afford much, even $1 will make a huge difference in whether the project gets the visibility to attract other contributors, and you can keep your name and amount anonymous. You can donate at:
http://www.indiegogo.com/solveeczema
It ends February 29, just weeks away. Thanks so much for all the moral support and support so far!

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Master list of bar soap recommendations

The task of reporting on my bar soap experiences continues to be somewhat daunting. To really test a given soap, it’s necessary to try it several times, continuously and exclusively, over the course of days. With only one wash, even the most drying soaps don’t necessarily cause the cracking, dryness, even peeling or hangnails that surface with regular use. (Fortunately, I found only a few such drying soaps.)

So, I am going to use this post as my master list, editing it as I go rather than adding new posts on this topic.

I have done my best to determine that each of these products is a true soap, but as I recommend on the site, always, always check first. These are my subjective experiences and opinions.  This earlier blog post on dry skin, eczema, and soap, may be helpful for evaluating products.

PLEASE NOTE THAT EACH OF THESE RECOMMENDATIONS IS FOR JUST THE SPECIFIC SOAP LISTED, OF THAT SPECIFIC “FLAVOR.” A RECOMMENDATION FOR ONE PRODUCT IN A LINE OF SOAPS DOES NOT IMPLY A RECOMMENDATION FOR OTHER SOAPS IN THE SAME LINE. SOMETIMES THE OTHER SOAPS IN THE SAME LINE HAVE PROBLEMATIC INGREDIENTS, FOR EXAMPLE. Also, not all of these soaps are necessarily okay for bathing infants because of other ingredients – I wanted to give grownups in the household some options, too. Always read ingredient labels for individual needs and sensitivities, and because manufacturers can change ingredients.

I am not grading these soaps so much as trying to categorize them.  Even the soaps in Category C (too drying in my experience) may work well for other people or may serve a purpose in someone else’s eczema removal process.  I personally use soaps in the A, A-, and B categories.  It all comes down to personal preference.

As of February 2014, I am editing down the list.  I have by now tried so many bar soap products, I am only going to list the ones I really, really like, or for one reason or other, think should be mentioned for problems (like dryness).  Fortunately, bar soaps is a category where there are literally hundreds of possibilities.

Because I tried so many soaps, I am going to sort the feedback on these soaps into broad categories only:

A) Bar soaps I liked the best: gentle, relatively non-drying, but still left the skin feeling clean, even soft and neutral.
B) Bar soaps I thought were pretty good and neutral, but didn’t make my A-list for one reason or another, such as leaving a lot of soap residue on sink surfaces, having an overwhelming perfume, etc.
C) Bar soaps I personally found too drying to use regularly.  Some of these improved with age to be very good (others did not).

Note that some of these “drying” ones are very popular soaps; individual experiences will vary. I hear good feedback about some of these soaps when it comes to eczema removal, too.  I list them here to provide as many choices as possible.

Please note that many “moisturizing” soaps backfire, causing the skin to feel soft or moisturized at first but increasing the permeability of the skin and causing it to lose water over time.  (Refer to “Lumsdaine’s Law” in previous blog posts.)

UPDATE:  Aging soap, by putting a bar away on a shelf for 6 months to a year, could turn a drying soap into a great one.  I have recently tried a bar of Tact, for example, that I put away for over a year, and it went from being unacceptably drying to absolutely luxurious and gentle to the skin.

CATEGORY A: Bar soaps I liked the best. Good cleansers while still relatively non-drying.
Sappo Hill Natural Fragrance-Free (vegan, good value)
Luxo Banho Creme
Luxo Banho Olive
-Tom’s of Maine Natural Deodorant Body Bar (only the deodorant body bar)
One With Nature’s Dead Sea Salt Soap (triple milled)
-Savon Extra Pur Orange bar soap (www.lcdpmarseille.com – best aged)
Tea Tree Therapy Vegetable Base Soap
Olivella unscented
Windrift Hill Moisturizing Goats Milk Soap (www.windrifthill.com, greatest scents ever, on the moisturizing side yet still good)
Dr. Bronner’s All-One Hemp Unscented Baby-Mild Pure-Castile Soap (only the baby-mild bar soap, plus let it age a month or two before using)
-Pure Soap Flake Company bar soap (might benefit from a little aging, but a very pure, simple soap – www.puresoapflakes.com)
-Ma Bella Goat Milk Soap (www.mabellaproducts.com, I tried for the first time after the bar was sitting out/aged a few months.)
-Niemela’s Market Gardens Soap (http://www.localharvest.org/niemelas-market-gardens-M60006 Made with rainwater infused comfrey. I have had uneven experience with very small-time handmade soap producers, but these are lovely. I only tried after aging, though.)
Villainess Soaps (Ennui – the fragrance-free – only  http://www.villainess.net/ennui.html  I have only used this after aging the soap 6 months.  Lovely, neutral soap, only drawback is cost.)

Almost as good, I give these an A-:
-pHisoderm pH skin cleansing bar unscented
-South of France French Milled Ultra Moisturizing Shea Butter Soap
-River Soap Company Rose Geranium (www.riversoap.com, almost put in A-list, has strong rose geranium scent)
-Deerhaven Herb and Flower Farm Handmade Soap, Vanilla Bean (www.deerhaven.biz)
-Apiana Alpine Milk Soap (triple milled, made in Switzerland)

CATEGORY B: Bar soaps I thought were pretty good, but didn’t make my A-list for one reason or another.
-Canus Goat’s Milk Soap, Naturally Rich Moisturizing
-Johnson’s Baby Soap Bar

CATEGORY C: Too drying in my experience (Note:  drying soaps may change entirely with aging and be great in 6 -36 months, depending):
-Whole Foods 365 unscented bar soap
-Burt’s Bees Wild Lettuce Complexion Soap
-Golden Moisture Bar Gentle Formula for Dry Skin
-TACT Pure Olive Oil Soap fragrance free (I’ve heard this one is great if aged, I tried an aged bar recently and liked it even better than Olivella on the A-list, absolutely luxurious when aged.)
-The Over-worked Mother’s moisturising herbal hand soap
-Whole Foods Milk French Milled Soap
-Cal Ben Complexion Beauty Pure Soap (Cal Ben liquid dish glow and shampoo in foaming dispensers make great hand wash, the bar is better IMO shaved for making laundry powder)
-Tom’s of Maine natural moisturizing body bar (almost too moisturizing to leave the skin feeling clean upon washing, yet drying later on)
-Trader Joe’s Trader Jacques French Liquid Orange Blossom Honey Hand and Body Soap (also very heavily scented – I let this one age a long time and finally gave up)

GOOD LIQUID SOAP PRODUCTS FOR HANDWASHING: Use in a foaming dispenser (most mixed 1 part soap to 6-10 parts filtered water, depending on the product).
Cal Ben Liquid Dishglow (very concentrated, must be diluted – www.calbenpuresoap.com)
Savon de Marseille Extra Pur Orange liquid soap (www.lcdpmarseille.com)
Dr. Bronner’s Baby Mild liquid (Dr. Bronner’s benefits from aging)
Vermont Soap Company Unscented Foaming Hand Soap (comes in a foaming dispenser)
Vermont Soap Company Baby Wash & Shampoo (I like this better to wash hands than as a shampoo, like it even better than the foaming hand soap – but dilute more than 1:10 or it’s too thick for the foaming dispenser).
Earth Mama Angel Baby Natural Non-Scents Shampoo & Body Wash (comes in a foaming dispenser – I love this as a shampoo, too).

Lastly, I have purchased and used all of the above products myself.  I do not endorse nor have I accepted any payment to mention or represent products.  For convenience, since people ask for it — and if I don’t, I am swamped with requests for specific product recommendations — I do have an Amazon astore where you can find most of the products (which earns a very small percentage when people buy using the links – on the order of $15/ month in ad revenue.)  Feb 2017 — I have decided to try adding direct product links from the Amazon store to this page.  The links will go to the specific product on Amazon, and I try to choose the cheapest one, but it’s probably a good idea to compare once at Amazon.

Recommendation for Dove Withdrawn Until Further Notice

Until further notice, I must withdraw my recommendation for Dove bar products. (I have never recommended the liquid products.)

For general use, and especially for “the washing test” on the solveeczema.org web site, I no longer recommend using Dove or any bar products with the same surfactant formula as Dove’s current unscented Sensitive Skin product, the formula of which was changed as of January 2007. See previous posts on this blog for more information.

Initially, there were several products with the same surfactant formula as the OLD unscented Dove formula with sodium cocoyl isethionate (give or take a few fragrances and colors), but they, too, seem to be changing over to the new surfactant formula with sodium lauroyl isethionate.

Here’s the problem:

I can recommend that people use any soap product, because soaps are a very narrowly defined surfactant. Thus, I can say that all soaps, provided they are relatively non-drying (and there are MANY non-drying soaps) should be fine for people with detergent-reactive eczema (also provided there are no individual ingredient allergies).

Without getting into a detailed discussion about Dove, empirically, unscented Dove, a combination of mild detergents, soaps, and fatty acids, was also fine. It was more than fine, actually, it worked especially beautifully to remove existing detergents on the skin that are a problem for people with detergent-reactive eczema.

Unfortunately, I have no such empirical information about the new formula. In fact, the majority of visits to my blog these days appear to be from people trying to figure out what happened to the old unscented Dove formula. I have received several reports of problems, though I cannot draw conclusions until I know much, much more.

The old unscented Dove product had lots and lots of empirical support, not just from those who successfully used my site, but from dermatologists’ experiences over many years. I have no idea why Dove’s maker would want to monkey with this successful product line.

Until further notice, instead of unscented Dove for the “washing test” on the solveeczema.org web site, use Cal Ben’s liquid dish glow from a foaming dispenser. (Do not use it straight as it is quite concentrated.) Rinse especially well. As always, spot test it first to determine personal sensitivity to the ingredients.

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Unscented Dove Discontinued? … Continued

I spoke with a telephone representative at Dove today. Apparently, both unscented Dove and unscented Dove for Sensitive Skin have technically been discontinued.

Dove has replaced both with a bar called unscented Dove Sensitive Skin. The new bar has a different ingredients list than either of the two products it is replacing:

Ingredients of the new unscented Dove for Sensitive Skin, as of January 2007:
Sodium Lauroyl Isethionate
Stearic Acid
Sodium Tallowate or Sodium Palmitate
Lauric Acid
Sodium Isethionate
Water
Sodium Stearate
Cocamidopropyl Betaine
Sodium Cocoate or Sodium Pam Kernelate
Sodium Chloride
Tetrasodium EDTA
Tetrasodium Etidronate
Maltol
Titanium Dioxide

As I have noted on my site, unscented Dove was a combination of soap and mild detergent. (For more about this, please see the web site, www. solveeczema.org, The Solutions page, search on the term “Dove”.)

The following are chemical names for true soaps:
Sodium Tallowate – soap from tallow
Sodium Cocoate – soap from coconut oil
Sodium Palmitate – soap from palm kernel oil
Sodium Stearate

Soap has gotten kind of a bad rap in some circles since the introduction of detergents. Some of it was deserved, as some soaps can be quite harsh. But so can some detergents. (This is all separate from the eczema issue as discussed on my site.) It’s unfortunate for people with eczema that all soaps were tarred with the same brush. But this is likely why products like Dove list “Sodium Tallowate” (tallow soap) and Sodium Cocoate (coconut oil soap) rather than just saying the product contains soaps.

The first ingredient listed for the old unscented Dove was Sodium Cocoyl Isethionate, a mild detergent.

A good resource describing most of the ingredients in the old and new products can be found at this blog [link]. (There is a straightforward discussion of the purpose of various ingredients, but just remember the issue of eczema, detergents and membrane permeability is a different discussion.)

The first ingredient listed on the new unscented Dove Sensitive Skin bar — the product replacing both the old unscented Dove and unscented Dove for Sensitive Skin — is Sodium Lauroyl Isethionate, a mild detergent that I believe is similar to Sodium Cocoyl Isethionate. The true soaps in the bar are essentially the same as in the previous products.

However, when I say “similar”, I do not know what that means from the standpoint of what it does to the hydration properties of the final product. I will have to watch and see what happens with this product before I decide how to best update the Solveeczema.org web site. I have bought the new product, and my only comment at the moment is that the old unscented Dove had, in my opinion, a nicer feel to it.

Some positive developments: The new product does not contain a masking fragrance as the old unscented Dove did. The old unscented Dove was so well-tolerated by people with eczema even with the masking fragrance, but it’s one less concern for anyone who doesn’t think the masking fragrance was necessary. The oils in the old unscented Dove for Sensitive Skin, including Sweet Almond Oil, are not in the new product. This is probably a good development for people concerned about nut oils. (I like Sweet Almond Oil in soaps, but my son is not allergic to nuts.)

So, in the meantime, if you are trying to locate a new soap product, I will try to put some reviews of my experiences with new products on this blog soon. Bottom line: if you are making the switch, find a non-drying true soap, it’s the safest if you are problem-solving the eczema. Products with the same surfactant and fatty acid profile as the old unscented Dove (the soap and mild detergent combination) are probably also fine, there are a few on the market, I believe. Just remember that the combination of ingredients is probably an important factor. I will try to post more about this soon.

Later post on this issue: No longer recommend Dove for the washing test.

Soap Flake Laundry Powder Recipes

I am frequently asked about recipes to make Soap Flake Laundry Powder starting with bar soaps like Ivory Bar Soap.

Here’s a great link (ignore the word “detergent” in the recipe titles, it’s just another example of how we use the terms “soap” and “detergent” interchangeably without thinking): Link

Another place to find recipes is on Recipezaar.com — as I point out on the web site, these too are entitled “detergent” recipes. Evaluate them by the list of ingredients, not the title.