Monthly Archive for December, 2015

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

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

Happy Holidays!

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

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

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

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

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

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

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

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

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

-A.J. Lumsdaine

 

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

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