A SolveEczema Perspective: “The Cure for Dishpan Hands” – Part 1

Over the years, I have been thanked by many people who used SolveEczema.org just to solve a dry skin problem, even if they did not have eczema. I have been thanked by many parents and more than one doctor who realized they could wash their hands frequently when necessary, without drying their skin out. As I am very clear about on my website, I am not a doctor, this is based on my own personal observation and research. Getting results relies on capitalizing on that new perspective, so it is essential to understand that new perspective first.  (I also fundamentally approach things from a Safety First standpoint — I will never suggest doing anything in a way that should make anything worse, or that has to be “toughed out,” so it’s important to understand first AND always keep a doctor in the loop even if they don’t know the site, in case the unexpected happens.)

I am writing this to share what we — and now many others — have done using the Solveczema.org perspective to get unexpected, out-of-the-box results with ameliorating dry skin, for those who maybe can’t seem to find any moisturizing cream thick enough to prevent painful cracked skin during the winter or on travel, or who struggle with washing the dishes even with gloves.

Obviously, I can’t promise a “cure” without a traditional medical study, the title above is just a restatement of the usual idiom and my opinion about its applicability, although this is a perfect set up for a clinical study. I believe this perspective could not only improve the health of health providers’ skin, but also improve compliance with handwashing, and thus help reduce hospital-borne infection.

If you are ready to try this, first read the SolveEczema site disclaimer, watch the SolveEczema site video linked from the home page (note, I made it for a long-concluded crowdfunding for my book and haven’t been able to update the ending, it’s an amateur effort — sorry, it puts me to sleep, too — but it’s only about 45 minutes and is still a good summary of the site).  Read everything here, use your judgment, talk with your physician as needed for health and safety issues, and don’t make any changes until you understand how different this is.  It’s not about individual products, it’s about learning how to have optimal skin health without treatments or moisturizing, by understanding what, in my observation, is really going on.

I need to mention here again an open source paper I posted online about SolveEczema, giving a rough description of how it relates to the eczema and allergy epidemic of recent decades, and summarizing many of the novel observations:  https://thewinnower.com/papers/3412-abnormal-ampli-fication-observations-from-applying-the-engineering-method-to-solving-eczema-and-atopic-disease

It’s only two pages — please refer to the Analysis and Observations section for essential novel observations.

Again, with my apologies for the presumption of giving this a personal, alliterative name like this in hopes of making it more memorable, I also need to restate this very different-from-traditional view of why skin becomes dry after washing, per my own observations, because it’s crucial for getting results:

Photo of bar soap on soap tray

Lumsdaine’s Law: For most people, under most conditions, eczema and dry skin are more the result of what is left on the skin than what is stripped from the skin by washing.

 

 

Photo of dry hand skin

Photo of dry hand courtesy of Wikimedia

Water alone on the skin increases the membrane permeability. Membrane permeability is basically just how easily certain substances — like water molecules — can pass through the membrane, from within and without.  If you wash your hands in the winter and don’t dry them well afterwards, your hands chap even if you only washed in water, because the water left on the skin increases the permeability and accelerates water loss.

Under normal conditions, the restoration of water in the skin is quite rapid; if someone washes and it takes days for the skin to rehydrate, my contention is that it’s because of what is on the skin in the meantime, not usually from what was stripped from the skin by normal washing. Detergents on the skin (see the paper) in combination with a small layer of water, including from sweat, dramatically increases permeability and subsequent water loss.

Continued in Part 2…

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.

(0)

SolveEczema News and Publication

One of the goals when I started to write a book about SolveEczema.org (still in the works!) was to find a way to bring the ideas into a mainstream medical and scientific forum for discussion and validation, including also writing a scientific paper. After years considering how to publish something so different, I published in a new open source platform called The Winnower, which offers post-publication peer review.

You can view the paper at: https://thewinnower.com/papers/3412-abnormal-ampli-fication-observations-from-applying-the-engineering-method-to-solving-eczema-and-atopic-disease

I know this probably sounds very dry to site users, but for anyone who has asked the question “Why didn’t my doctor give me this information?!” (too many to count have emailed me the same question), you may be interested in the scientific validation of this work, because it will mean other children will be spared the same suffering.  Although many doctors have used and referred SolveEczema.org to patients over the years, it will be tough to reach everyone or work on solving related health conditions without the validation of peer review.

I’m having some computer problems lately, so rather than trying to compose a post to explain, here are some edited excerpts from recent letters I wrote:
SolveEczema.org represents the novel application of modern technical problem solving, in particular, the engineering method, to solving a medical condition, eczema and related allergy. The engineering method has been described as “The use of heuristics to cause the best change in a poorly understood situation within the available resources.” (BV Koen, The Bent of Tau Beta Pi, 1985)

When an environmental cause underlies a medical condition, complex environmental and exposure differences can translate to seemingly intractable person-to-person variability. This work involves the unraveling of this seeming complexity by using heuristics that allow individuals to focus on controlling what’s important to problem solve in their own circumstances. The paper presents a number of insights that came about as part of the problem solving process and subsequent research, such as why a key aspect of the solution has been overlooked to date and why a new approach is needed for the validation of heuristic solutions.

A letter to a doctor who expressed an interest in a collaboration:
The article mentions how this perspective could reconcile seemingly contradictory hygiene hypothesis research. For example, for awhile, researchers said owning dogs and cats was protective, then they said it was just dogs, etc. The issue the research didn’t take into account was developments in cleaning equipment (e.g. better, filtered vacs, and more frequent cleaning of pet hair), and the fact that cats use cat litter which is just loaded with detergents that they track through homes. Birth order – anyone with a first child with allergies is going to make changes in the home environment and products, which are bound to be preventive for the later children, also never taken into account. Breastfeeding and allergies, too – the studies used to show a protective effect, then later studies said no.  I think both are probably right (the later studies looked at older children, where detergents were by then probably a more significant influence).

And (same person):

You are spot on about related health issues. I think ultimately this issue is as major an environmental problem as smoking was, in some ways worse because other creatures in the environment are affected. (I think it’s highly likely that frogs, bats, and honeybees, possibly even otters, may be experiencing serious unrecognized harm, but that’s another discussion.) Asthma, allergies, dry skin, and even wrinkles are major related issues. I have been surprised at how much the changes markedly decreased the propensity for sunburn (which could have a major impact downstream on skin cancer). Over the years, I have been thanked on several occasions by doctors specifically over the issue of having good skin despite constant handwashing – perhaps that’s something we could collaborate over. The physician handwashing issue touches on many health problems: hospital-borne infection, possible improving willingness to wash hands over using sanitizers (which is probably healthier for providers who don’t absorb so much through their skin, and reducing infections since washing is better than sanitizers), maintaining a better barrier on providers’ hands to reduce the harboring of microbes, possibly reducing the general need for antimicrobial chemicals in handwashes in some settings if mechanical means are less damaging (reducing development of resistant strains), etc.

I have been thinking a lot lately about whether it would be possible to design a case-control study. Unfortunately, the barrier is that the engineering method relies on heuristics – when an environmental cause underlies a disease, unless it is very simple to remove the cause, there is no way to apply a completely controlled treatment or course of anything. To solve the problem in every individual case, it’s necessary for people to use a heuristic tool to apply the solution in the best way for their individual environmental exposures, health status, genetic profile, etc. Then the concern is how well each person uses the heuristic tool versus how well the tool works for them. Additionally, with the engineering method, it wouldn’t make sense to apply the tool exactly the same for everyone, then judge what percentage were helped – the whole point of it is that if one case isn’t solved 100%, the unresolved case doesn’t become data, it becomes a resource to revise the heuristic tool to encompass new information to achieve the same standard of outcome or solution for that person and everyone.

That isn’t a problem-solving approach currently in use in medicine, and it clashes with normal epidemiological methods. The method itself would have to be the subject of peer review, in the context of a solution like this being peer reviewed. Just yesterday I heard an oncologist (The Death of Cancer) speak on the radio about how “regulations” were keeping him from solving problems for individual cancer patients. The ideal he described, what he really wanted to do, was really the engineering method. I think some doctors are using heuristics in other areas of medicine because they get better outcomes for their patients, and the lack of overt discussion of heuristics is, IMO, causing some of the bigger medical controversies of our time. Finding a way to ethically, with all the right safeguards, incorporate the engineering method into medicine, I believe could result in many currently unsolved disease problems being solved. No new scientific or medical breakthroughs are needed, just problem solving we already know how to do in other technical arenas.

Validating the site work – peer review is a start – would prove eczema and atopy are solvable problems, on an individual and general disease problem level.  That sounds simple, yet it’s an earth-shattering idea.  Believe it or not, the biggest challenge here is overcoming the idea, the really hard-ingrained prejudice, that a major, complex, seemingly intractable medical problem could even possibly be solved.

So, yes, finding a route to peer-review and publication has been challenging (ironically more challenging than solving my child’s severe eczema and helping thousands around the world do the same over the past >10 years).  You can view the paper at: https://thewinnower.com/papers/3412-abnormal-ampli-fication-observations-from-applying-the-engineering-method-to-solving-eczema-and-atopic-disease

 

 

Happy Birthday, Dr. Bronner’s New Non-Detergent Toothpaste

drb_toothpaste-tube-peppermint

drb_toothpaste-tube-cinnamon

I’m very happy to report that Dr. Bronner’s released a new non-detergent toothpaste almost a year ago today.  I’m also happy to report that the toothpaste has been a hit in our home.  It’s made of 70% organic ingredients yet fairly economical compared to the other non-detergent toothpastes we use.  The news release contains a list of all the ingredients in the three flavors of Peppermint, Cinnamon, and Anise:

Dr. Bronner’s Releases New Toothpaste

I’m always happy to see good non-detergent options in categories like toothpaste, shampoo, and dishwasher powder, where the commercial choices (or really good, competitive products) are fairly limited.toothpaste-box_anise_front

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

(0)

What to expect when implementing SolveEczema.og site strategies

Section of poster from Citizen Science Association 2015 conference

Section of poster from Citizen Science Association 2015 conference

First, referring to my last post, I noticed the thumbnail of the poster does not load.  But if you follow the link to the F1000 site and look at the upper right hand corner of the page, there is a link to download a PDF of the poster to enlarge and view on your computer.

So…  What to expect when implementing SolveEczema.org site strategies in terms of timing.

I get this question on occasion — the answer depends on people’s circumstances and what they’re willing or able to do.

I am now of the opinion that removing detergents (as defined in SolveEczema.org) is important for anyone with an allergy problem of any kind, and regardless of the dominant reason for outbreaks, I feel it is important for anyone with eczema to reduce or eliminate detergents, since eczema seems to be a threshold phenomenon.  Detergents basically make it so our immune systems “see” more of whatever it is we’re allergic to in our environment.  (This is medicine 101 — detergents increase membrane permeability — see SolveEczema.org.)

I have come across many, many people who have said they cleared things up substantially within a week of  implementation — usually after focused effort to get really close to 100% compliance with the strategies on the site.  If being that proactive is not realistic, then it could take weeks or even months, depending on what you are able or wish to do.  Depending on a variety of factors, it could take longer, even much longer.  Typically those longer journeys happen for a short list of reasons:

A few things can get in the way of success and make results take longer (see SolveEczema.org for more information):

1)  Not implementing close enough to 100% (this is very common), or the “holdout” problem in the household (and this can take many forms — sometimes people think the site strategies are just a matter of changing products and don’t really understand the exposures they still get at home).  See SolveEczema.org for details.  When this is the case, often when people track down that one remaining major exposure and fix it, everything gets better virtually overnight.  I’ve gotten that kind of feedback a lot.  Sometimes people will see so much improvement at first, they don’t think a few major exposures like their shampoo or their dirty old carpet will be a problem, for example, so they get lax and don’t get rid of things fully until they get serious about it.

2)  Hard water makes washing out old residues just take a lot longer, and makes washing with soap (an important strategy for controlling the other residues) less successful.  The whole process ends up taking a lot longer, people’s skin doesn’t heal up as fast, the skin is not as substantial early on, etc.  Clearing things up can stretch out to weeks or months.  (Though don’t get me wrong, I’ve heard many success stories from people with hard water, it’s just more difficult.)

3) Other allergens like pollen or mold in the environment to an unhealthy degree.  (Changes the threshold.)

4) Infections that need treating first before things will clear up.  Sometimes these are not obvious as infections at first, and are more an overrepresentation of certain microorganisms.  Nevertheless, treatment is sometimes necessary first.

5)  Other reasons for the eczema dominate, such as unrecognized food protein allergy or a problem with the health of the gut.  (This is where a good probiotic can be very helpful.)

6)  The person with eczema has very permeable skin naturally.  The younger the child, the more permeable skin is naturally in general.  When children are older, partial implementation might be enough to eliminate breakouts while being insufficient to get the full benefit to skin and lung membranes (asthma — see SolveEczema.org).

Things should never get worse, and no one should ever “tough it out”.  Always ask your doctor for help if anything does get worse.

I wish everyone a happy, healthy, eczema-free holiday and New Year.
AJ

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”?….

(0)

Sharing

I haven’t had much time to post, but this doesn’t require many words. I’ve been following the progress of a mom, Kathie, from Ireland who used my SolveEczema site and itchybaby.co.uk to alleviate her son’s eczema.   You can read more about her journey on her blog http://therealityofaperfectlife.blogspot.com

I think she’s planning a site just for eczema, with additional information about supportive herbal and dietary steps she took or learned about on her journey.  These before and after photos of her journey say more than I ever could in words (used with permission). It’s staggering to think how many millions of families all over the world are going through this now:

 

IMG_4467


IMG_4546

 

DSC_2607

DSC_1879

Off Topic: Salman Khan – Khan Academy: Education Reimagined


Salman Khan – Khan Academy: Education Reimagined

I haven’t forgotten loose ends I haven’t had time to tie:  inserting the citations into Letter to a Medical Student [part 1][part 2][part 3][part4], and posting the last installment of How to Get Rid of Ants for Good [part 1][part 2].  The information in the first two parts is no longer enough for people to solve the problem without the 3rd installment.  I’ve drafted it, I just haven’t been able to finish!

I posted that ant series with an agenda:  I have been following the work of microbiologist Bonnie Bassler on bacterial communications, and wonder if there may be an equivalent biological means of thwarting bacteria by manipulating their communications. (Manipulating rather than trying to kill them, which may not even be in our best interests as collateral damage to good bacteria causes other problems.)

I didn’t want to post anything new until I got around to finishing at least those two things, but I couldn’t help posting this amazing talk by Salman Khan of Khan Academy.

Wow.  Anyone who homeschools should see this.  Anyone who schools should see this.  I love his analogy of education being like building a house.  What’s the purpose of having some kids finish 60% of the foundation and 50% of the framing, and then moving on to something else just because everyone else does?  I went to a public school in a small town in South Dakota when I was a girl and it was a work-at-your-own-pace place, with so much enrichment.  I have since met SO many creative and accomplished people who came out of that one small program.

For SolveEczema.org users in particular:   After the talk, my son and I lined up with everyone else to shake Khan’s hand, say Thank You, and to take photos.  In the first part of his lecture, he was so candid about his journey in a way I wish I could be.  What he said rang so, so many bells.  When we got through the line, I said, “If you ever want to mentor someone, I think I’m you, only with medicine, and 7 years ago — at least I hope so.”  (10 years ago?)  I gave him my card, and he said, “That’s interesting, because I have eczema.”

I keep hoping he’ll try the site strategies, because I’m beginning to think this has to be experienced, even by those who don’t have eczema (especially by those who don’t have eczema) for anyone else to understand the broader medical and environmental implications.  To get researchers to understand why there’s almost no way the underlying environmental issues involved as described on SolveEczema aren’t a factor in bat white nose syndrome/bat fungal susceptibility — they almost have to experience the process and transformation themselves, again, even if they don’t have eczema.

Great talk for anyone who cares about education.
Salman Khan – Khan Academy: Education Reimagined

 

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

(0)