Archive for the 'Solveeczema.org' Category

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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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

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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Letter to a Medical Student — What % of Cases are From Detergent? — Part 3

I’m afraid I don’t keep track of citations electronically; I will add in citations after the last post.  There will be at least 4 parts.
AJ

[Part 1]  [Part 2]  [Part 4]
Part 3:

So when I say 25-60% of eczema cases result from detergents, I’m really considering the commonality of circumstances under which detergents would likely be the overwhelming factor in the outbreaks. These circumstances vary.

Because adults often have more complicated health pictures, and because they have naturally less permeable membranes, I would expect detergent as the overwhelming influence in a smaller percentage of cases than for infants or children. For infants, with their far more permeable skin and their still-training immune systems, the percentage is far higher.

Although, as I said, sometimes people can resolve the outbreaks by addressing one modulator or another, or all of them at once if relevant — the primary ones being detergents, environmental (or internal) mold/fungal/yeasts (or, for the internal, let us say, significantly imbalanced microbiome and consequences), or (typically certain protein) foods, or even in some cases the state of the immune system or membranes (skin, lung, and/or gut) health, because it’s all related — I think generally it’s possible to estimate how often the different major modulators dominate.

As you know, a number of studies have shown that pregnant women given beneficial bacteria (probiotics) during pregnancy reduced the rate of eczema in their infants by roughly 20%. [1]   It is my belief that these cases are the ones in which an imbalanced microbiome /fungal modulator would dominate had the eczema developed. Probiotics do more than just compete with fungal organisms, Lactibacillus has also been shown to repair the gut barrier. [2] (Also an important tangent I won’t go into, but this relates to the role of bio-surfactants and how environmental syndets interact.) Not that removing external detergents wouldn’t help those who would have developed eczema absent the probiotics— and there is overlap in the environmental strategies, relating to gut/membrane health as well — but for this segment of infants, about 20-30%, I feel the evidence suggests the fungal modulator dominates.

My observation from experience is that those for whom food is the overwhelmingly dominant factor is about 10% of cases. This is not a hard and fast number, it’s just based on experience, and could change based on conditions. As you know, even the rates of eczema around the world continue to change rapidly.

Other studies tangentially suggest roughly the same proportions: “…two-thirds of patients with atopic dermatitis have no measurable allergen-specific IgE. Are we not just measuring the right IgE? Perhaps, but not likely, considering patients with X-linked agammoglobulinemia (a disease in which patients have almost no IgE) commonly develop atopic dermatitis.” [3] (Note: IVIG, at least at the time of this paper, is normally processed with detergents and patients with X-linked agammaglobulinemia, I believe, need regular infusions. Again, not to go into a long discussion, but write back if you don’t see the applicability here.)

Noted Harvard pediatrician Dr. T. Berry Brazelton, whose writings in his book Touchpoints [4] gave me the spark that led to my own solution, observed in his book that he could prevent most cases of childhood eczema by identifying atopic parents and having them implement general allergy-healthy-home practices and avoid using detergents with their infants. I asked him just as you have asked me, on what research he based his recommendations, but he said it was just based on decades of medical practice and observation.

In his day, of course, there were fewer sources of syndets in home environments, and they tended to be less powerful. Given the instructions he gave, he would have been addressing the two most significant modulators. Given that this eliminated most cases of eczema — and considering the environmental differences between then and now — I feel his experience further corroborates my observation that the cases in which a food (usually a protein food from a short list) is the primary modulator and removing it completely resolves full-body eczema as well as fluctuations from various triggers, represents the smallest percentage of cases from these main modulators. (Let me repeat that none of these factors occurs in isolation, the food modulation relates to the state of the gut barrier, which can also relate to detergent ingestion and unhealthy balance of microflora.)

Although my perspective and problem-solving heuristic are novel, there are researchers who have been publishing along similar lines and whose work supports these contentions. The most notable is probably respected dermatologist Dr. Michael Cork in the UK, who has for many years had success when his patients remove all surfactants entirely. He does not make the distinction between soaps and detergents as I do — he writes about not using “soap” because of presumed consequences to the skin, but then goes on to underscore it by saying many “soaps” have detergents in them anyway. [5] I wasn’t aware of his work while we were problem-solving, but I think he has been publishing along the lines of surfactants playing a role in the eczema epidemic for years prior.

So our views are very similar. The main difference and a significant limitation of the no-surfactant approach is that it’s not really very acceptable to most people to refrain from getting clean — Dr. Cork’s assistant said this to me, the trouble is getting people to do it — and in my experience as well as my understanding of the problem, it’s not really necessary to refrain from washing. In fact, many of my site users (including doctors using the site) have commented on how healthy their skin remains even when they engage in frequent hand washing.

The main difference stems from perspectives on how skin is affected by washing. From empirical observation, I have come to see dryness and other impacts from washing as resulting from the residues of highly hydrophilic compounds ON the skin, because of the molecular properties of those residues and how ubiquitous those exposures are in modern environments, rather than the stripping of lipids from the skin by washing, which is the traditional view.

In fact, avoiding the use of traditional soaps with molecular properties that do not cause the kind of increased permeability that most modern syndets do, actually makes it more difficult to get results in typical modern environments. Where most people with uncomplicated histories can see results in as little as a few days to a week with my site strategies, and those with more complicated histories on the order of a few weeks to a few months, these no-surfactant-at-all approaches seem to take on the order of 6 months to 2 years, and the outcomes seem less satisfactory.

In relation to the abnormal influence of modern syndets, in my observation, everyone experiences a change in circumstances because of this environmental influence — degraded skin quality, often dryness that most people believe is inherent, otherwise increased susceptibility to allergic symptoms or amplified symptoms where an allergy already exists, exacerbated asthma — even though not everyone experiences eczema. Anyone under the age of 5 and over the age of 50 especially benefits from minimizing this influence just in skin quality. I believe virtually anyone has the capacity to express eczema under the right conditions, though. Certainly, worldwide eczema and atopy rates continue to rise, seemingly without bound. And in Sweden, which has some of the highest rates, researchers have noted the environmental factor seems related to something in the indoor environment. [6]

In any given situation, removing detergents, or changing another threshold factor (mainly environmental mold or certain protein foods, including via gut barrier health), or both, might bring a given person’s circumstances below the threshold of any potential for triggering the reaction.  If a person’s outbreaks could have resulted because of more than one factor, but that person removed only one of them and stopped reacting because of bringing a threshold up, that person would blame the eczema on that one thing, when they might as easily have achieved the same result, at least in the short-term, by removing the other factor.

I have had the experience with the site that some people will work very hard in their daily lives to remove triggers that cause outbreaks with each exposure — a pet, for example — only to find that when they follow the site strategies and go detergent-free, they can bring the pet back without the same breakouts or other allergic symptoms. (This is simpler with a dog; many cat litters have significant amounts of detergent in them or are otherwise highly hydrophilic compounds, but with the right awareness and choices, that influence too can be avoided.)

 

To be Continued in Part 4:

“To the question of estimating what percentage of the eczema/atopy problem relates to detergents … implies a broad understanding of the problem across the population …”

 

[1] Pelucchi, Claudio, Liliane Chatenoud, Federica Turati, Carlotta Galeone, Lorenzo Moja, Jean-François Bach, and Carlo La Vecchia. “Probiotics Supplementation During Pregnancy or Infancy for the Prevention of Atopic Dermatitis.” Epidemiology 23.3 (2012): 402-14.

[2] Rao, R. K., and G. Samak. “Protection and Restitution of Gut Barrier by Probiotics: Nutritional and Clinical Implications.” Current nutrition and food science 9.2 (2013): 99–107. Print.

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

[4]  Brazelton, T. Berry, and Joshua D. Sparrow. Touchpoints: Birth to 3. Cambridge, MA: Da Capo, 2006. Print.

[5] still ISO this paper, I have the print somewhere… It’s an older paper than I am finding easily on Pubmed

[6] Aberg, N., B. Hesselmar, B. Aberg, and B. Eriksson. “Increase of Asthma, Allergic Rhinitis and Eczema in Swedish Schoolchildren between 1979 and 1991.” Clinical Experimental Allergy 25.9 (1995): 815-19. Print.

 

 

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

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The role of surfactant in asthma

I’ve gotten much feedback over the years that the changes described in Solveeczema.org do more than help eliminate eczema for certain people, they help reduce or eliminate asthma, even in atopic family members who do not have eczema.  I’m not going to do too much analysis here, I’m going to let this article speak for itself:  The role of surfactant in asthma .  I haven’t yet looked for more recent research, but I feel like I’ve hit a gold mine.

We humans make surfactant essential for the proper function of our airway lining.  What happens when stronger, artificial surfactants are introduced with other inhaled substances, such as dust?

Listen to this:  “…sputum samples from patients with asthma have a low surface activity.”

And, “Interestingly, a washing procedure [of the airways ] with saline … restored surfactant function.”

I’m not drawing conclusions, but this is very, very interesting.

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Detergents in Everything

When I said detergents are in everything these days, I guess I didn’t know the half of it.

The Whole Foods web site lists “ingredients that are commonly found as inactive ingredients, or excipients, in dietary supplements.”  Sodium lauryl sulfate is listed as an “emulsifier; also used to aid in the making of tablets.”  It’s also listed as GRAS (generally recognized as safe, though a lot of dermatology patients would beg to differ).  Does this mean supplements, especially tablets, are a potentially hidden source of detergents?

What about over-the-counter and prescription medications?  I just found SLS listed in the “inert ingredients” of Doryx, an important delayed-release formulation of doxycycline.  Here I’m guessing the SLS is necessary for the time release.  If so, the benefits might outweigh the consequences.  Tetracyclines aren’t generally given to children anyway.

But if the posters to this Wisegeek.com article are correct, SLS is in such common medications as aspirin, ibuprofen, and Zyrtec, which are given to children.   Poster #5 found SLS in one generic formulation of Zyrtec but not another.  It probably pays to ask the pharmacist for a detailed manufacturer’s insert to identify inert ingredients of prescribed medications.  Taking the medication prescribed by one’s doctor is the more important consideration, but often there is a choice of formulations, and different pharmacies often have very different options.

Check out this EPA document:   “Sodium lauryl sulfate is used as a flea and tick repellant in one registered pesticide product — a flea and tick shampoo for cats and dogs.  Sodium lauryl sulfate also is a widely used component of many non-pesticidal consumer products currently marketed in the United States, including shampoos and fruit juices.”

Fruit juices?! I had assumed the eczema from some processed juices had been from washing the fruit in food-grade detergents.  Now I wonder about SLS as an additive!

The document above is from 1993, so the assessment may have changed since then (though I doubt it).

It continues:

“Sodium lauryl sulfate is a detergent-like substance that employs a non-toxic mode of action in controlling fleas and ticks on household pets. The potential for dermal and/or inhalation exposure exists to people applying the registered pet shampoo product. However, this exposure is not considered significant and does not create a health risk concern. Published reports suggest that sodium lauryl sulfate has low acute mammalian toxicity and no known chronic effects. EPA has no reports of adverse effects resulting from its use. Both exposure and health risks to people using the product are expected to be low.

EPA also believes that since the pesticide is used only on pets, negligible exposure to the environment and to nontarget organisms will result. The Agency concludes that the registered product and use of sodium lauryl sulfate should not result in unreasonable adverse effects to human health or the environment.

Yet one more source of detergent for Solveeczema users to watch out for — reading the labels of flea collars, too.  However, since the collars are used externally, I wonder if they even have to list the “inert” ingredients?  If pet owners had problems, would it seem like an allergy to the pet?

On that score, here’s an interesting paper from a veterinary journal:  Influence of inert ingredients in pesticide formulations on dermal absorption of carbaryl by RE Baynes and JE Riviere (PMID 9492931), Feb 1998.

“The SLS also enhanced [the carbamate insecticide] absorption, especially at low solvent concentrations.”  and in conclusion , “Inert ingredients can modulate percutaneous absorption of toxicologically important pesticides…”

And lastly, a paper from Environmental Health Perspectives from 2006 (PMID 17185266):   “By statute or regulation in the United States and elsewhere, pesticide ingredients are divided into two categories: active and inert (sometimes referred to as other ingredients, adjuvants, or coformulants). Despite their name, inert ingredients may be biologically or chemically active and are labeled inert only because of their function in the formulated product. Most of the tests required to register a pesticide are performed with the active ingredient alone, not the full pesticide formulation. Inert ingredients are generally not identified on product labels and are often claimed to be confidential business information.”  (emphases mine)

Update on Sunscreens

With summer approaching, it’s time to take another look at sunscreens.

The products list on Solveeczema.org is notably short on sunscreens.  We had good luck with Mustela’s Moderate Sun Protection Stick (SPF 20), but a company spokesperson told me last week that the product has been long discontinued and they have no remaining stock.

That’s a shame, since it was not only a great sunscreen — it didn’t seem to wear off even after hours in the sun and water, and it seemed to have better protection than the advertised SPF 20 — it was also the only Mustela product on the Environmental Working Group’s 17 most safe and effective sunscreen products.  (Scroll down the page to see the list and a link to a more comprehensive list of products and the EWG’s evaluation of them.  You can also search for products to see their ranking and list of ingredients via a box on the right of the page.)

I used the EWG’s list to try out a few of the sunscreens, and found them to be fine for my son.  We liked Badger Unscented SPF 30 Sunscreen, Loving Naturals SPF 30+, and Keys-Soap Solar RX SPF 30+ the best.

Mustela sent me a sample of the product they make to replace their discontinued sunstick, their SPF 50 Sun Cream for Sensitive Areas.  It also proved to be fine.  (It scores a 3 on the EWG’s rating system, 0 being safest and 10 being most problematic.)

We have tried California Baby stick sunscreens, and based on the ingredients, they too should be fine per the issues on Solveeczema.  They rank well on the EWG’s list of safe and effective sunscreens.  Note:  the California Baby stick sunscreen we tried gave my son a rash, but it couldn’t be because of the active ingredients, it must be an individual allergy.  A friend whose preschooler has this detergent problem worse than my son and follows the Solveeczema guidelines quite effectively to keep his skin clear, uses the California Baby stick sunscreens without problems.

Per Solveeczema.org, barrier-type sunscreens (such as with zinc oxide and titanium dioxide) are  a better bet than those that absorb.

Luckily, per the EWG’s evaluations, the majority of sunscreens on their safest ingredients list also seem to be zinc oxide and/or titanium dioxide based.  As with other products, it’s always good to try a small patch for sensitivity first.  (All sunscreens contain other ingredients; always be aware of the potential for allergy to other ingredients, especially in the sun and water.)

Have a safe and fun summer!

Non-detergent Cleaners on Oprah

Here’s an entire page of non-detergent cleaners — all of which would work for Solveecema users — recommended on Oprah’s web site for being green and saving money.

http://www.oprah.com/world/Shift-Your-Habit-to-a-Fresh-Start-This-Spring-Elizabeth-Rogers/4

Persistence of Detergent Residues

I think this research paper by Horiuchi Utako from Gunma University in Japan speaks for itself — the translation of the abstract isn’t perfect, but the meaning is perfectly clear:

1)  A lot of detergent remains in clothing even after excessive rinsing.

2)  A significant amount of those residues can migrate onto other surfaces that come into contact with the clothing, including skin.

The abstract is short and is well worth reading.  The interesting conclusion to Solveeczema users:  “wash the diapers for the babies with hypersensitivity using soaps in stead of synthetic detergents.”

The paper appears to have been published in 1983.

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Update on mattresses: Avoiding dust

Here’s an interesting development.  In a previous post, I wrote about our experience choosing a mattress that wouldn’t be an allergy source for this specific detergent problem.   In trying to find something that wouldn’t shed detergent-laden dust or introduce potential allergens such as latex, we chose an organic cotton mattress with a food-grade polyethylene dust-mite barrier from Naturepedic, on a solid maple platform bed from Pacific Rim.

With some months of experience behind us now, I have to add a wonderful observation.  Not only have we had no problems with detergent dust, we have had no problems with dust of any kind!  In my experience, the space under mattresses is a breeding ground for large dust bunnies.  Under this mattress, there have been no dust bunnies to speak of, and almost no dust at all.

I don’t know if the dust-mite barrier is entirely the reason, or if it is a combination of the barrier and the higher-than usual space under the bed (good air circulation) — but the rest of the room has remained quite low-dust as well, with no dust bunnies around the bed, either.

In contrast, the traditional mattress in the other room begets as many dust bunnies as ever, as I have come to expect is normal under a bed.

Quite apart from the allergy issue, it’s wonderful not to get those piles of dust under the mattress.  I never realized shedding from the mattress could be such a source — especially since we vacuum our traditional mattress every time we change the bedding.

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