Whole family got MCS from a sick house in 1995

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24 years ago we moved into an almost-new home, 6 bedrooms and 4 baths in a gated community with the best schools nearby. My wife and I expected to raise our then 6 and 2 year old children in that home.

Something went wrong -- despite hiring the best consultants money could buy we never found the culprit, but it started with water perched on the hardpan soil coming up through the slab and past the massive particle board backs of the custom cabinets. To make a long story short, all four of us ended up with MCS, we fixed the drainage problem and sold the home with a disclosure to a real estate professional who lived there 5 years without incident.

I was able, with the support of a series of managers, to remain in the workforce another 21 years. Our children were, with off the books accommodation from a series of school principals, able to be mainstreamed in public schools through high school. Our son went to Stanford (although had to reset by a year because the required freshman year in the dorm couldn't accommodate his MCS), at great effort and expense for an off campus solo apartment and all the adaptations he heeded. Our daughter went to our local University of California campus, again in an off campus apartment.

We had some extraordinarily interesting experiences as we tried to figure out life with the consequences of the sick house hitting crisis, which we now call MCS. It was a Rosetta Stone moment when I realized we were standing in a big box store with the four of us each having a different symptom set (each a syndrome known to but not understood by mainstream medicine) in response to the same exposure in the same moment.

We spent years, and including all the mistakes several hundred thousand dollars, adapting our new, smaller home, in a less prestigious subdivision a few miles away. Part of what we do is multiple showers per day, fresh towel each shower, several changes of clothes per day, fresh sheets each day, and of course if anyone leaves the house their clothes are quarrantined and they shower immediately on return, with out clothes washed separately. Source control is more important than filters, but we do both. We chose not to invest a lot of time or money in Environmental Medicine, but that has worked for others.

Multiple Chemical Sensitivity, as patients like my family experience it, cannot possibly occur given the basic theory on which the practice of mainstream medicine is based now (and in the 140 years since what we now call MCS was first reported). So it confuses most doctors, even before the litigation defense PR work of the chemical industry in the 1990s (ESRI and related efforts) and the effort to suppress the diagnosis of MCS by going to the various US states' medical boards and convincing them that diagnosing MCS is quackery so significant that a single instance should cause a physician's license to be revoked (NCAHF, also 1990s).

I attempted a "Lorenzo's Oil" style effort to stop or undo the effect of all this on my then small children in the first few years after we evacuated the sick house. The effort was a total failure. There is no cure for MCS, only avoidance of triggers -- unless it's a learned behavior (ie anxiety or phobia in reaction to the normal responses most people have to excesses of modern fragrances, cleaning chemicals, etc) in which case it can be unlearned. Incidental to the "Lorenzo's Oil" style effort, I came to a model of MCS which is certainly wrong but has proven useful to us over the intervening decades: the blood/air barrier is an approximation (a fiction); the way the body handles low molecular weight things which routinely cross the barrier is by capturing them on the binding sites of circulating proteins in the bloodstream; MCS is simply an autoimmune attack on some subset of these circulating proteins. This is utter heresy, it's suitable to discuss with a researcher but not a practicing doctor; the only two things one could possibly infer from it are (1) avoidance, which we already knew, and (2) however crazy, there is now one hypothesis for how MCS could actually work, so it's probably no longer appropriate for a physician to testify that it cannot possibly be a physical phenomenon; and don't worry and just ignore all this if it makes no sense.