Multiple Chemical Sensitivity

Multiple Chemical Sensitivity causes adverse reactions to low levels of environmental toxins generally considered safe. Other labels for this condition include “Environmental Illness” and “Sick Building Syndrome” because indoor air pollution aggravates the condition.

Though MCS may appear similar to allergies, it’s actually quite different. Allergies are the immune system attacking a foreign substance. MCS seems more related to neurological damage and toxicity related mechanisms. The Chemical Injury Information Network reports:

“The latest research strongly suggests that chemical sensitivity is most probably some combination of central nervous system and blood-brain barrier damage, low-level porphyrin abnormalities, and detoxification enzyme deficiencies.”

Think of how everyone reacts to toxins at some dosage, right? Well, MCS tends to force people to the extreme end of that spectrum. For example, most people experience symptoms when air quality is significantly polluted. But I get them when the air is only somewhat compromised. Same reaction, smaller dose.

A more comprehensive summary can be found at the Chemical Injury Information Network. I highly recommend their site for general info on the subject, along with their newsletter Our Toxic Times.

MCS onset

My case of Multiple Chemical Sensitivity began when I was 13 years old, roughly in tandem with my CFS onset.

In 2001 I copped a massive overdose of Albuterol. Albuterol inhalers are used to treat asthma emergencies in a few puffs. The ER doctor said to keep taking it until I stopped wheezing. The problem? I didn’t have asthma at all, just a stubborn case of chronic bronchitis. This misdiagnosis resulted in me taking over 50 puffs several times. To add insult to injury I was also on prednisone, antibiotics, singular, and additional inhalant treatments at the ER.  This all occurred while under high stress at a choreography camp a few thousand miles from home for a 6-week singing tour.

A couple nights later I reacted to a roommate’s skin product. The coughing fits were so severe I was forced to get out. And I hadn’t even touched the stuff! I ended up shivering on the balcony, the only place I could breathe. It was bizarre because I hadn’t reacted previously. They all went to bed wondering what my problem was. I tried to make sense of what was happening as I waited for the air to clear.

Sleep deprived, dancing and singing all day through serious illness, I was in the ER three times in ten days for breathing issues. The last one sent me home. “You’ll kill yourself if you continue“, the doctor said.

My health never recovered.

Reality sets in

Upon returning home, several products I used began causing reactions. My favorite body scrub was fine last week but now making me cough. It was puzzling, but after multiple attempts I was forced to accept that I simply couldn’t use those products anymore.

Then I discovered that reacting to products from other people wasn’t an isolated incident. One night my little sister sprayed body wash all over her room, which was located directly next to mine. My reaction was so severe I was unable to be anywhere near it due to violent coughing fits and breathing restriction. I was forced to evacuate to the basement that night, my bedroom too contaminated to sleep in. It remained an issue for days.

Over the course of searching for answers, an allergy specialist administered the methacholine challenge to test for asthma. The results proved I don’t have asthma. But I reacted so severely to the testing substance that the doctor insisted I never let anyone administer that to me ever again. It wasn’t coughing fits this time; apparently I collapsed and was very pale. All I recall is them scrambling for the crash cart. The weakness lasted for a couple hours after.

I learned to be careful with my products. I learned to run away from people wearing lots of products, coughing and gasping for air. In hindsight, this was “mild” MCS. It was bad enough to cause some problems, but manageable so long as I took precautions.

A turn for the worse

At age 16 I contracted a double ear infection. I took three rounds of antibiotics, one right after the other. I had harsh reactions to the first two, falling in the “less than 1%” category for side effects. In one case I lost the capacity to recognize familiar faces and places for days.

Not long after that my health completely tanked from POTS and CFS, and MCS followed with vicious severity not long after. Within the year I was forced to give up all personal care products, most of my clothing, and any exposure to paper and ink. Reactions ranged from itchy, painful skin to headaches and dizziness, nausea, insomnia, and my now all-time classic: coughing and throat shutting off my airways.

My parents took me to every doctor we could think of. Most of modern medicine just shrugged, so we sought out natoropaths and specialists. Dr. David Buscher of the Northwest Center for Environmental Medicine turned out an invaluable addition to the team.

Nevertheless, despite everyone’s best efforts, I continued to worsen.

Quest for safe housing

My world became increasingly smaller. Proximity alone cause me to react to so many items, I couldn’t be near them. Leaving behind most possessions, I moved into an empty bedroom. When my MCS worsened still further, I resorted to a stripped down bathroom. It was the last place I could sleep without my airways constantly closing. Even there I still experienced life-threatening reactions, just less often. The isolation was crushing.

In a last-ditch effort to save my life, my parents used my college fund to purchase a so-called “porcelain trailer” renovated by the late Tad Taylor for MCS sufferers in need of safe housing. They bought it, sight unseen, then had it towed across the country as a final desperate measure.

It worked. That trailer saved my life. For the first time in nearly a year I experienced what it felt like to have entire days go by without life-threatening reactions.

But the fight wasn’t over yet.

The nightmare continues

We had hoped that once I had relief from constant exposures that made me sick, my MCS would improve on its own. Unfortunately it didn’t work that way. Whenever the rest of my health worsened, I would experience another wave of increase in my Multiple Chemical Sensitivity. This means something perfectly tolerable the day prior would suddenly begin causing reactions.

Heidi Mull in Trailer 2013 Multiple Chemical Sensitivity

One of the most traumatic examples was when I began reacting to all my clothes and bedding. At first it was just a few items causing itchyness or red hot tingly skin after brief contact. But then overnight my airways began reacting to every single bit of fabric material I had. After trying used and new clothing without success, we spent a small fortune on fabric material of unbleached, undyed cotton. My mom used this to painstakingly sew a wardrobe of clothing and bedding for me. The material first had to be soaked, boiled, and washed countless times before I could risk it near me without my airways reacting.

A similar issue occurred in finding a mattress for the bed. Most things we tried would restrict my airways too much to sleep. So I spent over a year sleeping on bare wooden slats covered by a few sheets. I was mostly bedridden, so it was pretty harsh and caused bedsores. After extraordinary effort and money thrown at the issue, we finally found some organic wool that didn’t seem to cause a problem. My mom created a mattress from it and I used it for several years, relieved to have one problem solved.

Then I woke up one night with airways shut off entirely–no air in or out. I desperately strained so hard to breathe that it felt like my chest was tearing itself apart from the inside out. After what felt like an eternity, I got the slightest bit of air. The reaction gradually lessened from there.

I had developed a reaction to wool.

It was back to sleeping on slats. For how long, I don’t remember.

There are hundreds more examples I could share, which I mainly try to forget. It was the darkest years of my life.

The horror was further worsened by the doubt of several people who would rather believe my condition was psychosomatic or something I was just doing for attention. No one wants to face the reality that an illness this unthinkably horrendous actually exists without viable medical treatment. My mom, in her unwavering support, shielded me from the worst of it.

Improvement

I knew my general health was beginning to improve from an alternative treatment approach for several months before I saw the first spark of hope that my MCS was abating. The changes came slowly, but they were unmistakable. When wearing my gas mask (chemical cartridge respirator) in an otherwise intolerable environment and the seal was momentarily compromised, instead of immediate severe reaction I began to notice a bit of a delay, that gradually lengthened the more I improved.

My experimental, controlled exposures began yielding positive results for the first time in nearly a decade. Look what I can do! I can breathe even though a car just passed by 30 feet away! Woops, okay maybe the fumes from 2 cars is too much. But I did one just fine! That’s improvement!

The progress astounded my MCS specialist. Having been with my case from the beginning, he didn’t think it possible.

I slowly climbed out of it in this manner over the next several years.

Current Status

I still have to wear a gas mask in all environments of unknown air quality. That means most buildings, with only a couple exceptions. I also must take additional precautions in places with a heavy chemical load. When stuff from the air clings to my clothing it can contaminate an otherwise clean environment. I get around that issue by changing clothes in the transition. Then I seal up the dirty laundry in 2 gallon ziplock bags so it doesn’t cause further problems.

The good news is with these precautions I can go pretty much anywhere these days–I’m free!

My boyfriend has to be extremely careful with the products he uses. Sometimes he has to change clothes too, depending on where he’s been. Any misstep temporarily banishes him from my presence. There aren’t a lot of partners who could handle that! Most personal care products are still off the table for me, but I’ve learned to make my own and make do without for the rest. Sometimes I still try a bunch of them, ending in frustration and wasted money. Every once in a while I find one more that works.

Pharmaceutical medications still must be custom compounded (literally made from scratch) before I can try them to remove as many potentially problematic ingredients as possible. But nowadays I tolerate perhaps 80% of ones I try, as opposed to more like 10% when I was at my sickest.

And, perhaps most significant of all: Most housing can now be “terraformed” to make it safely liveable for me. so long as the initial contamination is not significant. Safe housing is the most critical issue for those with severe MCS. I still cannot crash on a friend’s couch for the night, but I’m no longer confined to a specialized, custom-built environment.

My MCS is still occasionally life-threatening, but I’m more or less out of the woods and we’re hopeful that improvement will continue.

Last updated 11/15/2016