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

Published on July 9, 2014 in About Eczema, Solveeczema.org, Solveeczema.org and Top Posts. Closed

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

Published on July 3, 2014 in About Eczema, Solveeczema.org, Solveeczema.org and Uncategorized. Closed

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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Letter to a Medical Student — What % of Cases are From Detergent — Part 2

Published on June 27, 2014 in About Eczema and Solveeczema.org. Closed

This question was such a good one and needed a more complete answer than I could give in a short blog post.  I will be rolling out the entire letter in 3 or 4 parts, and refining it as I go.  I will be asking more than one doctor I know for feedback, and revising as needed.  Here’s the link to Part 1 of the letter.  I hope the information is helpful. 
AJ

 

Question from a medical student:

“On your website, you write that detergents may be responsible for eczema 25-60% of the time. I was wondering if you wouldn’t mind sharing with me how you found this number. It is very interesting that so many people have had relief from eczema after eliminating detergents and I was wondering if you could direct me to any literature corroborating this finding so I can look into it further.”

My Answer — Part 2:

This is a good question, and the answer not a simple one. The estimate is not really equivalent to a traditional epidemiological statistic, but rather it encompasses circumstances related to outbreaks, per my empirical observations and ideas, and a view of the relevant medical literature through this new lens.

On my website, I wrote that detergent-reactive eczema “likely accounts for 25-60% of eczema, depending on the age group and locality, higher if other allergies and an inherited predisposition are factors.” I believe I can now propose a revision of the Hygiene Hypothesis that not only accounts for the rise in eczema and atopy, but can satisfy conditions of causality and leads to solutions consistent with the underlying basis. However, the issue is more complex than saying one thing underlies a certain percentage of cases and another thing underlies others.

Eczema as a Signal — “Normal” and “Abnormal” Eczema

First, I should point out that I do not see eczema as a “disease” that some people have and others do not, in the way that a person might have dysentery or chicken pox. I believe eczema (and other allergic symptoms), under normal environmental conditions (such as we evolved with), is a helpful signal from the immune system to the conscious brain, in the way that pain is an unpleasant but helpful signal from the nervous system to the conscious brain.   (I have a stack of research papers that I believe directly supports this contention, but that’s a discussion for another day.)

At any given time, some people may experience no pain, some may experience more pain than others under similar circumstances, others more chronic pain than others for a variety of reasons. The percentage of people experiencing pain depends on the circumstances. Some circumstances happen more frequently than others. Sometimes accident or disease processes that trigger pain unnaturally cause the pain itself to essentially be a “disease” problem. But fundamentally, pain in our bodies is a signal that everyone can express.

I believe eczema and allergies, too, are signals. The signal of eczema is triggered under certain conditions. Actually, let me be very careful in how I use the word “trigger” here. I believe the signal of eczema can be expressed when a certain threshold is crossed. That threshold depends on a number of factors having to do with the environment and the immune system, membrane health being intimately tied up with these. Once that threshold is crossed, outbreaks may happen continuously, or every time a traditional “trigger” is encountered, such as dust mite exposure or certain pollens, for example. If one is below that threshold, then exposure to the traditional triggers won’t cause eczema, or won’t cause it unless there is a very significant exposure. (I discuss this conceptually on my site as the bucket analogy of allergy.)

This is worth restating:   I see allergy, “normal” allergy — I consider anaphylactic allergy as different — as an adaptation, not disease pathology. Given the historic prevalence of allergy even before allergy rates saw such precipitous rise after WWII, this makes sense. As with pain, virtually anyone can develop an individual allergic response at some point in life under the right circumstances. For any inherited condition to maintain such significant prevalence in the population, there must be some compensating benefit. Given the rapid rise in eczema and atopy since WWII, the cause of this “abnormal” allergy must be primarily environmental. Per Klueken et al (review, from Schultz-Larsen et al) [1], “This continuously increasing frequency of [atopic dermatitis] during the past 30 to 40 years suggests that widespread environmental factors in the industrialized world are operating in genetically susceptible persons.”

Let me also be very clear by restating once again that I am differentiating historically “normal” allergy from the modern manifestation of eczema and allergy, which are not normal. If eczema is a signal, most eczema today is almost certainly the result of unnatural environmental conditions inappropriately triggering that signal — or, modulating down thresholds to reacting — with a genetic component to the susceptibility. I believe based on my present understanding that the people with naturally lower thresholds to reacting in normal environments would otherwise have a genetic advantage.

Allergens are similar to pathogens to the immune system. To the extent that harmless allergens take more energy to differentiate from pathogens, there is probably a survival advantage to people (or — speaking to possibly evolutionary roots — to migratory groups that have such people among them) whose immune systems can tell them to reduce exposure to certain benign substances that make the immune system’s job more difficult.  An interesting aspect of allergy is that “normal” allergy makes sufferers miserable in a way that often points to the source of the misery — aeroallergens relate to breathing symptoms, contact allergens to skin, etc. — but without incapacitating.  Allergy concurrently increases adrenaline, giving sufferers the ability to move away from what is making them miserable.

I believe there is probably a survival advantage in the more ready expression of this signal under normal environmental conditions, and that there is likely a way to support my overall perspective on allergy using genetic archeology.

Restore more normal environmental conditions, and the signal is still triggered under the right conditions, only far less often and in a more “normal” and helpful way (giving the conscious brain important feedback). But the signal can be triggered in anyone, I believe, under the right conditions.

The ISAAC studies (I’m remembering off the top of my head, please correct me if it was another source — after I post this, I will go back and put in the citations in a few days anyway) (Feb 2017 update – I am not sure this is the original paper I meant but it’s close [2]), showed a roughly linear relationship between atopy rates and eczema rates by nation. If you accept that the expression of atopy is mainly the result of abnormal modern environmental conditions in recent decades — given the rapid rise, significant prevalence, and genetic aspect, most serious researchers take that perspective — then nations with the lowest rates of atopy would be most likely to demonstrate historically natural rates of eczema.  Off the top of my head, rates of eczema might be low single-digit percentages, or even a fraction of a percent.

I think there is a relatively short list of threshold modulators and a longer, well-known list of triggers. Threshold modulators are where I believe the solution to the eczema problem lies; they seem at first glance to be unrelated, but I think they can be tied together in a simple and logical way. (Also a long discussion for another day.) Detergents — which my site deals with at length because their role is as yet poorly recognized and they are a relatively new environmental issue — abnormally modulate that threshold. I believe high levels of environment mold exposure (to be more precise, dampness-related exposure), or abnormal internal fungal involvement, is one of the more significant normal modulators of the threshold, in fact, may be primarily responsible for the adaptation.

The World Health Organization report on Dampness and Mould/Guidelines for Indoor Air Quality http://www.euro.who.int/__data/assets/pdf_file/0017/43325/E92645.pdf notes that atopic individuals experience increased susceptibility to dampness-related health effects, and according to NIOSH, “a more recent epidemiologic review published in 2011 reported that indoor dampness or mold was consistently associated with bronchitis and eczema [Mendell et al. 2011][3].”

In other words, eczema is more readily expressed in the presence of increased indoor dampness/mold, and atopic individuals are more susceptible under the circumstances. In regard to internal fungal involvement, much research has been published over the years in regards to the use of antifungals with eczema. (Again, big topic for another time.) Some viral illnesses can, in the short-term, do the same. (I discuss this on the blog, I think.)

Certain protein foods associated with full-body eczema outbreaks, too, can modulate that threshold, or be both modulator and trigger, under different circumstances. As I said, I believe there is a connection between these and detergent effects, but that’s a complex discussion for another day.   (Discussed briefly in several posts on the blog.) Basically, I suspect compromised gut barrier leading to proteins in the blood stream — and consequently increased levels of circulating endogenous detergents to denature them — has a similar impact to abnormal environmental detergent exposures. Associated outbreaks could run the gamut between normal and abnormal and/or amplified by other abnormal threshold modulators.

Abnormal environmental conditions today lead to abnormally lowered thresholds to reacting, especially in those with a certain genetic susceptibility. Abnormal environmental conditions also effectively amplify traditional triggers (for example, detergents are known to increase antigen penetration).   Again, this isn’t necessarily a topic I can cover in this letter, but I believe all of these seemingly unrelated factors tie together.

There is a proportionality to the reaction to detergents — a proportionality to the impact on permeability — but the reaction itself is not a simple irritant or an IgE-mediated allergy to detergents, as I discuss on my site. The eczema, I believe, in its abnormal manifestation resulting from abnormal environmental influences today, is an amplified, unnatural triggering of a normal signal.

So when I say 25-60% of 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.

 

To be Continued in Part 3:

“… — I think generally it’s possible to estimate how often the different major modulators dominate.”

 

[1] Klüken, H., Wienker, T. and Bieber, T. (2003), Atopic eczema/dermatitis syndrome – a genetically complex disease. New advances in discovering the genetic contribution. Allergy, 58: 5–12. doi:10.1034/j.1398-9995.2003.02162.x

[2] Flohr, C, et al. The role of atopic sensitization in flexural eczema: findings from the International Study of Asthma and Allergies in Childhood Phase Two. The Journal of Allergy and Clinical Immunology. 2008; 121(1):  141147.e4. doi:  10.1016/j.jaci.2007.08.066

[3] Mendell, Mark J. et al. “Respiratory and Allergic Health Effects of Dampness, Mold, and Dampness-Related Agents: A Review of the Epidemiologic Evidence.” Environmental Health Perspectives 119.6 (2011): 748–756. PMC. Web. 17 Feb. 2017.

 

 

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 1

Published on June 20, 2014 in Uncategorized. Closed

I appreciate hearing from someone in medical school.  When I first wrote the website, I was doing citizen science before there was a term for it, so I had no framework to do anything but share through our own journey, in order to help as many people as possible until I could write something more traditionally scientific.  I thought the site would appeal mostly to natural practitioners but be ignored by allopathic practitioners until I could do a study and publish in more traditional outlets.

I found almost the opposite.  Don’t get me wrong, I’ve heard my share of positive feedback from naturally-oriented practitioners who found the site useful.  But I’ve actually gotten the most ready acceptance from allopathic practitioners who read the site.  If they just glance at it or page through it and think they know what it says, they may be dismissive, but if they actually read it, they are invariably positive, even enthusiastic.  I’ve heard from many doctors over the years who not only have used the site for their families, but refer patients to it.  I’ve been thanked by many parents who had my site information because a doctor gave it to them.  I’ve heard from doctors who just appreciate being able to wash their hands frequently and still have healthy skin.  My own doctor once told me that she had just commented to a colleague that, “She really has solved eczema!”

I think the reason my site has been surprisingly well-received by allopathic practitioners is that my perspective pulls together so many loose threads from available research, and views the whole through a new lens that is consistent with what is already known.  I’m putting empirical problem-solving into the context of the available research, with which it is absolutely consistent.  Too often people make good empirical observations and then overlay a vague and unscientific framework to explain it (which may or may not be accurate or generalizable, often not).  It’s not surprising then that allopathic physicians don’t accept the empirical observations, no matter how sound.

And, there is a difference between understanding something scientifically and getting people to implement a problem-solving heuristic in order to address an environmental problem affecting their health — my site is mainly a problem-solving heuristic, although I do have to explain enough that people understand why because my perspective is so different.  People still need their doctors in implementing such a heuristic for safety’s sake, for anything medical really, but the site is not a medical treatment per se, so doctors who understand what it’s trying to achieve typically appreciate having that resource available.

The one specialty exception has been dermatologists!  Which is understandable, because what I am saying does in some ways fundamentally conflict with what they learn about the skin.  For example, one of the key stumbling blocks is the accepted traditional idea that skin becomes dry from washing because of lipids stripped from the skin.  I take a different view, that skin becomes dry because of water loss resulting mainly from the molecular properties of residues ON the skin, residues left from washing or absorbed from contact with dust or surfaces.  (See previous blog posts for more — scroll down to links for “Posts on understanding and solving dry skin”.)

My view is really radically different, but if you think about it, the idea that skin is dry because of stripped oils or lipids from washing is more an educated assumption not incontrovertibly proven by thorough scientific study, the way it was assumed in the early days of AIDS that the virus was dormant rather than locked in a fierce battle with the immune system which the immune system eventually loses, as was eventually found.  My view that the water loss results mainly from the interaction of (primarily syndet) residues of certain molecular properties with the skin isn’t yet proven, either, but it’s at least consistent with very basic biological science that every medical student learns.  Most importantly, my view pans out in solving the problems of dry skin from washing and very often, eczema.

So…

You asked how I came up with the statement that detergent-reactive eczema “likely accounts for 25-60% of eczema, depending on the age group and locality, higher if other allergies and an inherited predisposition are factors.”

(I’ll answer that in my next post.)

Best regards,

AJ Lumsdaine

Dogs and Cats Get Eczema Too: Feline and Canine Atopic Dermatitis also on the Rise — How to Make a Healthier Home for Pets

Published on May 13, 2014 in Uncategorized. Closed

Using SolveEczema.org for dogs and cats with atopic dermatitis:

Scratching Dog

Image courtesy of anankkml / FreeDigitalPhotos.net

Atopic dermatitis is not just a growing problem for people, more and more household pets are suffering as well. Horses can be affected, too. I will deal with this topic a little more in my book, but I felt like I had to write at least something now.  Because dealing with this issue for dogs, cats, and horses is far easier than it is for babies, animals cannot help themselves by telling us how they feel, and these environmental aspects of the problem are addressable and not their fault.

Households that try these environmental strategies may also find that in addition to helping skin, the animals may themselves end up less allergic, and be less allergenic to people.

As I point out on the SolveEczema.org website, these are my own ideas, they are novel;  I am not a health professional and I am certainly not a vet.  The ideas are the result of “citizen science”, consistent with the body of available mainstream research but have not themselves yet been the subject of such research.  The information is supposed to augment the relationship between health professional and patient, not supplant it.  I always strongly suggest people keep their health professionals in the loop, and that’s not just a liability disclaimer, it’s because it’s important.  Your doctor or vet or naturopath knows you, your child, your pet, and if anything else is at issue or something goes wrong, they know what to do to keep you safe.  Having a trusting, working relationship with a good health care provider is like gold.

As I also point out on my website, it’s necessary to read through the information before making any changes, and especially before making assumptions.  People often incorrectly think they know what the site is about, and either take the wrong or inadequate measures, or dismiss it out of hand.

For example, many people believe that because there is a genetic component to the susceptibility, that the problem cannot be primarily environmental in origin.  There are actually fundamental reasons under the circumstances that the problem CAN’T be primarily genetic even when there is a strong genetic component, which I will discuss in the book.  People — and pets — with the atopy, those WITH the genetic susceptibility, are the most likely to be HELPED by these environmental measures.

The fundamental problem for cats and dogs is this:

*The dust in people’s homes, which cats and dogs are more directly affected by even than people, is full of substances that significantly impact the permeability of their skin.  The increased permeability leads to excessive water loss, dry skin, and more allergens crossing the skin barrier.  The disrupted skin is also more susceptible to bacterial and fungal infections, and not just because of the broken skin, but because the substances inactivate important proteins.  These substances also increase healing time of membranes.  Solving this problem involves changing what is in the dust, which is very doable, not having a dust-free home which is impossible.

*The surfaces dogs and cats spend most of theirs days lying on are coated with these same substances, which can be absorbed from contact.

*Many of these substances are in the fertilizer and poison products sprayed around peoples grass and homes outside as well, which dogs and cats also spend a lot of time in contact with.

*Most commercial cat litters are full of these substances.  When a cat grooms herself, she not only ingests them, she also dissolves these substances into the dander, making the dander even more allergenic than otherwise.  When a cat walks around the house, these substances are tracked around the house and added to the dust of the home.

*Most products used to wash dogs, even “natural” ones, contain these substances, and residues left in their coats (and there are ALWAYS residues) cause the same problems described above.

boy and dog

Image courtesy of Ashley Cox / FreeDigitalPhotos.net

Trying the strategies from the website does not have to be a lot of work.  Please be aware that the site is geared to people with infants who have the most permeable skin and greatest susceptibilities, and who need to see the fastest, most dramatic results.  To help animals, you don’t have to sweat the small stuff, just be aware of what measures will have the greatest benefit and impact.

A few things to remember:

*Please only make changes AFTER reading and understanding the website.  Begin with the slideshow overview to understand.  It is 45 minutes long, only 6 slides.  My apologies to everyone, I originally made it for a crowdfunding for the book, I am not a media person, and the video puts even ME to sleep (sorry!).  It is still the most up-to-date summary and worth beginning with:  http://vimeo.com/33522513

*Helping a cat or dog with AD is not as difficult as helping an infant human — the whole house has to get on board, but you won’t have to sweat the small stuff (like makeup or deodorant) — however, the same principles apply.

*Keep your vet in the loop. Treat as recommended by your vet, especially for bacterial or fungal problems that may have developed, as well as flea control.  Where treatment product choices are possible, choose only products that don’t contain detergents as defined on the SolveEczema.org website.  DON’T MAKE ASSUMPTIONS ABOUT WHAT THAT MEANS! (People are almost always wrong when they assume.)

*Treating fungal problems is more of an art, and can sometimes require long-term application.  Treatment fungal problems initially can cause Jarisch-Herxheimer responses, known as “die-off” reactions, which seem to make things worse.  This disruption in the membrane can actually make things worse and stymie results, plus it’s just uncomfortable for the pet patient, so effective antifungal treatment may involve both using a steroid temporarily with the antifungal, followed by longer-term antifungal therapy.  To minimize die-off for a known fungal problem, sometimes it’s necessary to back off the treatment and begin very, very slowly, with very small amounts ramped up to full strength, and to treat for a very long time.  Switch treatments if one no longer seems to work.

*Getting a good well-filtered vacuum is an essential step.

vacuuming

Image courtesy of artur84 / FreeDigitalPhotos.net

*If you have carpeting, especially old carpeting, consider removing it and replacing it with some kind of non-allergic surface like hardwood flooring or Marmoleum/natural lineoleum, perhaps with area rugs as necessary (washed only with non-detergent products).  A friend clued me in to a way to find Marmoleum cheaper:  Talk to the local supplier and ask if you can add square footage to the next really large order they get (provided you like the material).  We know someone who got really high quality Marmoleum for the price of cheap vinyl that way.  Natural linoleum is not as easy to install and it’s better to have an experienced pro do this.

*Can you wash out the cover of your pet’s bed or bedding?  Follow the SolveEczema.org website strategies for superwashing.  If you have hard water, it may take more washing than suggested.  Use one or two washes with just 2 cups of white vinegar in the wash.

*Remember that the dust in your home is mostly made up of your skin cells, hair, and lint, and that your pet spends most of their day in it.  Marketing is powerful —  even if there are better ones out there, people can be very strongly and irrationally attached to their personal care products (especially since there can be worse ones out there).  You’re just changing what you use in order to help your pet, and it does not have to be a compromise, you can find things you like as much or better, but you may find some you like less in the process.  Don’t give up!

*For most good products, the biggest influence on whether new products work well and produce lovely results, in my experience, is not the products themselves but the hardness of the water.  It will be more difficult to find acceptable products for people with hard water.

*If you don’t have time to superwash the laundry, you can take a lower-key approach that may take longer and produce results more slowly over time, but is far less work.  First, switch to a very benign detergent like Planet (the only syndet I feel comfortable recommending) for a few weeks.  Then switch to just using baking soda and/or vinegar in the laundry for a few more weeks.  Then switch to true soap in the laundry, but wash each load twice.  Once with soap, and then once with just water.  Be sure to follow all the directions about washing out the dryer of previous detergent residues, and be sure to clean out all the detergenty lint in the laundry room.

*For cats, investigate non-clumping cat litters, like cedar chips.  Unfortunately, the clumping litters are the ones with significant amounts of detergents or clays that are very hydrophilic and could theoretically cause the same problems.

*Take a look at the ingredients of the products you use in your yard and patio — detergents are very commonly used in all kinds of products like fertilizers and poisons because they reduce surface tension and spread products more evenly.  example link

dog in bowl

Image courtesy of imagerymajestic / FreeDigitalPhotos.net

*In the case of benefiting just the animals, you also don’t have to switch your dishwashing products, but I recommend doing so anyway as a healthy step for the benefit of everyone’s mucous membranes.  Our digestive systems make up a goodly portion of our bodies’ immune systems.  If you don’t take this step, do at least buy non-detergent soaps to wash the water bowls and toys of pets with AD.

*You can’t necessarily use bathing to control exposures of animals as you can children, but you probably won’t need to.  But still, use baths judiciously relative to exposures, as “eczema removal time”, such as when the dog (or cat, IF appropriate) is scratching from spending time in the yard.

*With pet fur, it’s also probably impractical to moisturize.  People who use the site strategies usually find over time that they no longer need to anyway.  Absent these abnormal environmental influences, a pet’s skin should not need moisturizing.  As with humans, the creamy absorbing moisturizers can backfire and cause more water loss later (see SolveEczema.org blog posts about dry skin).

*Most vet sites recommend to control other environmental allergens like mold and dust mites.  I will write more about this contributor to dermatitis for people, too, soon.

*Remember that even people who do not get eczema themselves usually benefit from these steps in the health of their skin and other membranes.  it may not be apparent at the beginning, but a few months into this, pay attention to your own skin — you may find it’s better than you ever remember.  If not, you should find better products, because they exist!

*Although all members of a household usually benefits from the SolveEczema.org strategies, it’s normal for pets to have eczema but not the humans, or vice versa, or for both to have it.  (The reason for that should be evident from reading the site and blog.)

*I know how difficult it can be to change products.  Marketing is very powerful, even when people are aware of it.  I remember what that’s like, but now feel much happier with most of the best products I’ve found.  That said, dogs and cats are likely to see some results even if there is a “holdout” in the household.  If you try the site strategies for your pets with eczema, please let me know how it goes.

I have listed some pet products on my Amazon astore, which is there for people’s convenience, but there are other products out there, and the site discusses how to evaluate them.  When people purchase through those links, I receive a small percentage without increasing the buyer’s price (usually on the order of $15/month, not significant, but I need to say so in case it makes a difference to people one way or another).  The link is:  http://astore.amazon.com/solvsblogastore-20

Use a search engine to learn about “canine atopic dermatitis” — although I don’t necessarily agree with various sites about what to do about it, it’s clear that it’s a growing problem.

If you are helped by these strategies, please consider returning to the website donations page and making a donation — most people don’t (and that’s okay, that’s obviously not why I do this!), but they do help.  People are often willing to pay far more for treatments that don’t work, so if this has been worthwhile to you, please consider a donation, it does help.  Thanks!
A.J. Lumsdaine

http://solveeczema.org/donate.html

 

 

Favorite posts and annual autumn-eczema reminder

Published on October 18, 2013 in Solveeczema.org and Top Posts. Closed
Autumn by Monika Lumsdaine

Autumn – by Monika Lumsdaine
A favorite photo

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

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

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

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

 

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

Some summaries – what SolveEczema.org is all about:

My favorite FYI’s:

Posts about finding soaps and non-detergent products

What some other people have done (or not):

My very favorite Off-Topic Posts:

 

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

Some Badger Sunscreens Recalled for Contamination

Published on September 29, 2013 in Uncategorized. Closed
badger sunscreen lotion

Some Badger Kid and Baby sunscreens recalled

Since I recommend this sunscreen as one of the best for SolveEczema.org users, I just wanted to post this voluntary recall information:

“Some Badger sunscreens are being recalled after potentially-dangerous bacteria and fungus were found during testing….”

http://www.cbsnews.com/8301-204_162-57604845/badger-kids-sunscreens-recalled-for-bacteria-fungus/

 And for Canadian users (thanks to Julie for the link!):
Here’s the link directly to the Badger site with the UPC and lot #s:
Please check your sunscreen right away!  I have used this sunscreen for years — love it! — and think they are doing the responsible thing by letting consumers know.
For notices like this in the future, sign up for email notifications of posts, or follow me on Twitter @ solveeczema
(Okay, I still have no idea how Twitter really works, or if saying @solveeczema or #solveeczema even gives the right information to people who want to do so!  I will post the recall link from the Badger site there, but since I just started there and have no followers on Twitter yet, I’m not exactly sure for what purpose…  Kind of pathetic, huh?  Refer to my “I am not a Luddite” missive below…  )

 

 

 

 

I Am Really Not a Luddite, Just Finite

Published on September 17, 2013 in Off Topic Posts. Closed

I am really not a Luddite.

I tried using Facebook, but somehow it wouldn’t let me separate SolveEczema.org from my personal page, so forget that.  After making some monumental blunders — such as replying “yes” when it asked if I wanted to import my contacts from Yahoo, only to discover it had automatically spammed everyone who had ever written to me about the website with a Facebook request — I closed and deleted the account.

I know it’s possible to separate the personal and professional on Facebook — or maybe not, I’ve heard differing opinions —  I just haven’t had time to figure it out for myself.  As someone who truly grew up hand-in-hand with the age of technology, I no longer suffer arcana well.

My undergraduate advisor at MIT was a brilliant semiconductor device physicist, David Adler, who was very proud of the fact that he’d never used a computer.  “That’s what graduate students are for,” he would say.  His work enabled the building blocks of computers, but he had no time for them himself.  I have always envied him those graduate students!

Ape the book coverI am finally making progress on my book, so I purchased a copy of APE: How to Publish a Book by Guy Kawasaki and attended a lecture by him at my local bookstore.  It’s brand spanking new advice about a rapidly changing field, and every bit as readable as his other books.  Since I have always intended to self-publish, Kawasaki’s APE was exactly the right book at the right time.

While I think he’s absolutely spot on with his advice — his advice is sound,  his advice is great!  — much depends on building a social media platform.  But how am I going to do this without a graduate student or two?

His suggestion to me at his lecture was to hire someone to help.  Yes!! That would absolutely solve the problem, it just can’t happen on my side of reality for now.  We live in different worlds, Guy.

My website stats tell me this year SolveEczema.org has already had over 40,000 unique users — as many as all of last year — and the vast majority arrived from bookmarks and links, not search engines, with multiple page views per user, meaning, people are sharing.  The blog gets between roughly 1,200 and 1,700 views per month (how many unique users that means, I don’t know.)

So how do I turn that into followers on twitter or Google+ (whatever that is!)?  (I am not a Luddite!  I am not a Luddite!)

That was a poor and backhanded way of apologizing for taking so long to finish this book.  I spent much of last year as the crazy parent trying to improve indoor air quality at our local school, where my son began experiencing some pretty significant allergy problems, and so did I and my husband, truth be told.  The school ended up doing a great deal, and the experience was not wasted and will become another chapter in the book, as allergy and eczema are so related.  I learned much in the process, as always.

This is also a backhanded way of explaining why Guy Kawasaki’s book is my first twitter post!  You can now follow SolveEczema.org on twitter!  (I think…)

 

Master List of Laundry Soaps

Published on May 14, 2013 in About Products and Solveeczema.org. Closed

Sources of pure soap laundry powder or liquid

Always check ingredients first, manufacturers change product ingredients all the time.   I have compiled some of these along with other non-detergent products on an Amazon astore for convenience, and some of the links below go directly (most of the mfr links went bad).
http://astore.amazon.com/solvsblogastore-20
A small % of astore purchases goes to SolveEczema if purchased through the link, on the order of $15/month).  Unfortunately, not all of these laundry products are available on Amazon so I can’t easily include most of them in the astore.

To save money or time, do it yourself!  There are many online recipes for laundry powder and gel using bar soaps, and various amounts of borax, washing soda, and baking soda.

Here are the pre-packaged products I found:


pure soap flakes

Pure Soap Flake Company
Laundry powder, soap flakes, soap bars

 

 

 

 

 

 

Pure Soap Flake Company
http://puresoapflakes.com/
They have an unscented laundry powder which is just simple soap, baking soda, borax and washing soda.


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cal ben seafoam laundry soap

Cal Ben Seafoam Laundry
25 lb. box

Cal Ben Seafoam Laundry Soap
http://www.calbenpuresoap.com/seafoam-laundry-soap.php

More complicated list of ingredients than most of these, plus sprayed with citrus oil, but it’s essentially soap-based.  I have used this product successfully.

 

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Zumclean-sweetorange-laundrysoap

Zum Clean Laundry Soap

 

 

 

 

 

 

 

 

 

 

 

Zum Clean Laundry Soap
64-oz Sweet Orange on Amazon
http://www.indigowild.com/category/natural-home-cleaning/
Liquid laundry soap, various fragrances.  No unscented.

 

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vermont soap

Vermont Soap Liquid Sunshine
Other Vermont Soap products work for laundry

Vermont Soap Liquid Sunshine Nontoxic Cleaner Concentrate

Gallon Vermont Soap Liquid Sunshine on Amazon
http://shop.vermontsoap.com/Liquid-Sunshine-Nontoxic-Cleaner-Concentrate_p_59.html#.UZBrGo7DIVQ
Vermont Soap has other liquid products that can be used in the laundry.  Their website describes uses for each product.

*

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Dri-Pak Soap Flakes
through MSO Distributing


dri-pak soap flakes in a bag
Dri-pak soap flakes on Amazon
http://www.msodistributing.com/shop/orders.html

Pure soap flakes may work better if combined with baking soda, washing soda, and borax, per many recipes on the web

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 *

Dr. Bronners baby mild soap

Dr. Bronners Liquid Soap

Dr. Bronner’s
32-oz Dr. Bronner’s Baby Mild liquid on Amazon
For many people, the only easy soap to access is Dr. Bronners.  Unscented Baby Mild as probably the best place to start.  Combine with baking soda, borax, and washing soda for better efficacy in laundry.

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Savon de Marseille flakes

Savon de Marseille
Traditional French Soap

Savon de Marseille Soap Flakes
Marius Fabre Marseille soap flakes on Amazon
Traditional soap flakes.  Can be combined with washing soda and borax, especially in hard water.  (It may pay to shop around, these are expensive.  Their liquid soaps use minimal ingredients and pure olive oil, and are also an option combined with washing soda and borax.)


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pure soap works laundry soap

Pure Soapworks Liquid Laundry Soap or Laundry Powder (Canada)
http://www.puresoapworks.com/specialtysoaps.htm 
This company seems to carry a full line of soap products.

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Zote Laundry Soap Flakes

Pack of 8 (17.63oz) Zote laundry soap flakes on Amazon
Still the most popular laundry product in Mexico.  (From animal tallow.  Also contains fragrance and optical brighteners.  Despite it being soap, users must take care if allergy to fragrance or optical brighteners might be an issue.)

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Grandma’s Laundry Soap

Grandma's Laundry Soap

Grandma’s Old-Fashioned Laundry Soap


Grandma’s laundry soap on Amazon
http://grandmaspureandnatural.com/laundry

A lard-based soap flake product.  This appears not to have any dyes or unnecessary ingredients.  This company also sells a soap-based stain remover stick and bar soaps.  They seem to understand the difference between soap and detergent per the site.

 

 

Off Topic (sort of): Is the Placebo Effect Real?

Published on May 11, 2013 in Uncategorized. Closed

In order to help people with my site and blog, I try to stay away from saying anything controversial — aside from my belief that eczema is eminently solvable and understandable, and that there is nothing really wrong with these kids absent these relatively new environmental influences.  I only wish what I have to say in this post weren’t controversial — I don’t know why it is, but it is.  Forgive the lack of photos, I’ll try to remedy that soon.  This post is excerpted from a letter I wrote many years ago, and it highlights the philosophy that led to the way I went about problem solving eczema for my son.  I have posted this opinion anonymously online since, but I may as well come out and say it.  There are critical (unnecessary) barriers to solving intractible health problems, and real people suffer while we all wait for those in ivory towers to break them down.  In the era of distributed knowledge and the Internet, that must change.

When people use the site to problem solve their own children’s eczema, the breakthrough is usually when they can see the eczema outbreaks are not random.  In my experience, when people accept they can solve the problem, they are more than halfway there.  When they see they are in control, they’re there — they may not yet have all the influences or rashes eliminated, but they know they can do it.  I believe the perspective discussed below could help solve other currently-deemed intractable diseases.  I hope the following is helpful to others:

—AJ Lumsdaine, SolveEczema.org

More than ten years ago, Danish researchers Hrobjartsson and Gøtzsche published the watershed study, “Is the placebo powerless?  An analysis of clinical trials comparing placebo with no treatment,” in the New England Journal of Medicine.  The two researchers looked through the history of placebo-controlled clinical trials and found over 100 studies that included three patient groups rather than two:  1) a group given treatment, 2) a group given a placebo intended to mimic treatment, and 3) a group given nothing at all.  The authors decided to compare the groups given nothing to the placebo groups, and found that there is no significant clinical effect associated with placebos.  In other words, the placebo effect – interpreted as improvement resulting from patients’ belief in a treatment – is more myth than reality.

As you might imagine, the study generated quite a firestorm in the medical community.  I remember reading a letter by the head of Harvard Med School, in which he scratched his head at the earth shattering results, but also said he wouldn’t want anyone to give him a placebo.

And after such earth-shattering results, then what happened?

Hrobjartsson and Gøtzsche followed up with another study in 2004:  “Is the placebo powerless?  Update of a systematic review with 52 new randomized trials comparing placebo with no treatment.”  Again they “found no evidence of a generally large effect of placebo interventions.  A possible small effect on patient-reported continuous outcomes, especially pain, could not be clearly distinguished from bias.”

Although these researchers were arguably the first to make a dent in ironclad beliefs about placebos, especially in the media, they are not the first to analyze and refute the concept.

In 1997, researchers Kienle and Kiene wrote, “In 1955, Henry K. Beecher published the classic work entitled “The Powerful Placebo.”  Since that time, 40 years ago, the placebo effect has been considered a scientific fact.  Beecher … claimed that in 15 trials with different diseases, 35% of 1082 patients were satisfactorily relieved by a placebo alone.  This publication is still the most frequently cited placebo reference.  Recently Beecher’s article was reanalyzed with surprising results:  In contrast to his claim, no evidence was found of any placebo effect in any of the studies cited by him.  There were many other factors that could account for the reported improvements in patients in these trials, but most likely there was no placebo effect whatsoever.  False impressions of placebo effects can be produced in various ways. … These factors are still prevalent in modern placebo literature.  The placebo topic seems to invite sloppy methodological thinking.  Therefore awareness of Beecher’s mistakes and misinterpretation is essential for an appropriate interpretation of current placebo literature.”

No one is claiming that placebo-controlled trials are unnecessary.  On the contrary, these studies further emphasize the importance of placebos in clinical trials to eliminate the junk drawer of biases and other effects that needs to be separated from the clinical effect of the drug or treatment under scrutiny.  But the studies also point out how sloppy definitions of the placebo effect have perpetuated false beliefs.

The popular lay understanding of the placebo effect — the myth — is of powerful physical changes that result from an expectation or hope, a belief that good will happen if one is taking a medication (or that bad will happen if one is expecting bad side effects).

On the other side of the spectrum, is the definition of placebo effects as what is attributable to everything else that is not a medication effect – including the natural course of the illness, other effects caused by a placebo, even reporting biases among researchers and patients.  When the definitions are confused, the placebo effect is falsely supported as resulting from belief in treatment.

For a classic example of confusing changes from belief in treatment with other effects caused by a placebo, look no further than a watershed arthroscopic surgery trial from a few years ago, meant to test whether placebo-controlled surgeries are necessary and oft-cited as demonstrating that placebos are powerful.  Unfortunately, the many who wrote about this study as proving the power of placebos, meant placebos-as-causing-physical-effects-from-expectation.  But that’s not how the researchers of the study were using the term.  (This is one reason, especially in this day and age, full medical articles really must be made available to everyone online, not just abstracts.)

Patients were divided into three groups — patients to receive one of two popular arthroscopic surgeries, and a patient group to receive a sham surgery in which they were operated on and closed up without any actual surgical intervention.

Patients in all three groups improved, and this was taken as proof the placebo effect is powerful, and equated to mean the belief in treatment produces powerful effects.

But in fact, if people read the full article, they could see the placebo in this study wasn’t just the surgery.  Patients in all three groups – those given one of two different kinds of common knee surgeries and those in the placebo surgery group – all patients followed a comprehensive regimen of rest, walking aids, gradual exercise, and analgesics, in addition to their surgeries.  So, the placebo in this study was not just a sham surgery, the placebo was a sham surgery AND a comprehensive regimen of rest, walking aids, gradual exercise, and analgesics.  Unfortunately, there was neither a group that got the same regimen of rest and rehabilitation but did not get surgery at all, nor was there a control group that got nothing, to determine whether the observed improvements were from an independent effect of the placebo (i.e., improvements from just the rest and rehabilitation) or the natural course of the disease.

The study authors merely examined whether two common knee surgeries produced better outcomes than a placebo surgery (they did not), the study design in no way supported the existence of real clinical changes stemming from patients’ belief in treatment.  In fact, the study authors made oblique reference to the Hrobjartsson results and suggested themselves that the effects they observed could be the result of the natural course of the disease or related to an independent influence (but not the result of a belief in the treatment).

Despite such serious research supporting the need for a revolution in how we think about the placebo effect, nothing has really changed in over a decade.

Too few studies bother to delve into how the natural course of a disease plays into the picture.   If we know now from definitive research that improvements aren’t from belief in the treatment, but the result of something else, shouldn’t we be acting on this?

I’m sorry to burst one of the happiest bubbles in popular medical mythology, but there is just no good evidence that belief in a treatment alone produces a significant clinical change down the road, only wishful interpretations that it does.

Now, I’m not suggesting there is no mind-body connection, far from it.  I’m only saying that just because we see some obvious mind-body connections, does not mean that the conscious brain has unfettered control of all physiological processes.  Just because you can jump over a box, does not mean you can leap tall buildings in a single bound.

I’m also not saying, believe it or not, that there will never be a role for harnessing hope in medical treatment.  I’m just skeptical that sham treatments are the right vehicle.  If a passenger tries to catch a moving train, for example, a sudden surge of hope might make all the difference in whether she catches it and reaches her destination.  The surge in hope won’t allow her to keep outrunning a train forever, though.  In other words, a short-term belief could affect the long-term outcome in a significant way – but only if the train is real, not a mirage (or a sugar pill).

There is a much more serious issue at stake here than whether we can harness the power (however minor it has proven to be) of belief in treatment.  The popular concept of the placebo effect—as resulting from belief—undermined the crucial role of empiricism in medical practice, which has in turn seriously degraded the scientific authority of clinicians (even within the medical profession, very rigorous and scientific observations by good clinicians of individual patients are typically deemed “anecdotal” by definition).  This has in turn led to an over-reliance on statistical studies in medicine to problem solve for individuals (leading naturally to “one-size-fits-all treatments”), rather than to PROVE solutions found through empirical means.

In the decades since the concept of the placebo effect was first embraced, how many millions of times have doctors come across clinically significant improvements in their patients, even cures, but dismissed what they saw as the probable result of their patients’ beliefs in treatment, the irreproducible products of their patients’ minds?  How many times have clues to cures been left uninvestigated because of how beliefs about placebos lead to handwaving about the “vagaries of the human body”? 

We know now, we have solid proof now, that significant clinical changes are not the result of beliefs but of something else.  Something else — like the rigorous plan of rest and rehabilitation in the arthroscopic surgery study — that could, through empirical problem solving, be discerned and tested and turned into a solution or many solutions.

Every day, the belief that clinically significant improvements in individuals may merely be the result of the placebo effect costs our world opportunities to solve or cure tough diseases.