MY MCS STORY

By Ann McCampbell, MD

I was a healthy and active child.  No allergies.  Could eat anything.  I played lots of sports, including softball, basketball, and my favorite, beach volleyball.  I also loved to drum and played in many rock bands after I graduated from medical school (see band promo photo below – that’s me on the right).  I never dreamed I would become sick and disabled.  It just was not on my radar screen.

 

GETTING MCS

In my mid-thirties, I noticed I was having increasing stomach pain after I ate and felt more tired.  When a doctor friend did some blood work, he told me my white blood cell count had dropped below normal, but he did not know why.  Neither did I.  My food reactions slowly got worse over the next several years.  I cut my diet back to a dozen vegetables, but I still felt sick after I ate. 

In 1988, I lifted a box and felt something give way in my back.  My back hurt immediately and within three weeks I also had pain in both legs.  That was my last day of work.  It turned out I had a protruding disc in my low back.  Most people are able to recover in a few weeks, do some back-strengthening exercises, and return to normal activities in a few months.  But my back did not behave normally.  It did not get better.  The only thing that helped relieve the pain was lying down.

In 1989, I tried eating some protein powder and had the worst food reaction of my life.  It totally blew my circuits.  My heart started racing, I couldn’t sleep, and my stomach was in knots.  I felt nauseated.  I could hardly eat.  What I did eat went through me undigested.  I lost 15 pounds almost over night.

At the same time, I developed full-blown multiple chemical sensitivity (MCS).  After exposures to perfume; car exhaust; laundry and paint fumes; barbecue smoke; felt pens, and even metal buttons on my jacket, I now felt woozy, nauseated, and fatigued; got a metallic taste in my mouth; had body and muscle aches; and/or my heart would race or start skipping beats.  Every day I stumbled on to more things in my environment that were making me sick and suffered the consequences.   

It was a terrifying and mind-boggling experience.  The world looked pretty much the same, but my relation to it changed completely.  It seemed like almost every molecule I breathed in made me sick.  I could not believe it was happening.  Objects and substances that were my friend the week before were now my enemy.  My back was as bad as ever.  I could not figure out what was going on.  They never taught me anything about this in medical school! 

I could no longer tolerate the place where I had been living because it was moldy and full of pesticide.  I tossed an old foam pad into the yard where I lay for the next five months.  I could only be up for 10 – 15 minutes a day.  (Little did I know then I would be lying down for the better part of the next five years.)

These months were the worst of my life.  I was in constant crisis.  I had little defense against whatever chemicals wafted my way and was at the mercy of nature and my neighbors’ and landlord’s activities.  Neighbors lacquered cabinets and lit frequent barbecues.  My landlord built a garage 20 feet from where I was laying.  I had to huddle under a tarp when it rained.  And then there was a 7.0 earthquake.  It was a horrible feeling being trapped on this mat with no where else I could go. 

GETTING HELP

Luckily, I had some chemically sensitive friends who quickly hooked me up with a support group and environmental doctors.  That was a huge help — getting plugged in to the “E.I.” (environmental illness) network fairly soon.  But I also had my run-ins with disbelieving mainstream doctors, including a psychiatrist who told me I was anorexic because I wouldn’t eat food that made me sick.

I reached out for help from my family.  By this time, I could no longer drive, go to a store, wash my clothes, or fix my food.  Although initially skeptical and confused, my mother and sister Kathryn came to my rescue.  My mother was a trooper – buying and preparing food, doing my laundry, and taking me to appointments.  She also helped me hire attendants, which I needed for about five years.

SKUNK

Just in the nick of time, I found a tolerable guest house and moved indoors right before winter.  But within a year, strong neighborhood skunk fumes were making my house uninhabitable and I was getting sicker.  That’s when I learned skunk musk contains a neurotoxic chemical called butylmercaptan.  In an attempt to escape from the fumes, I enclosed myself in an aluminum foil tent with two air filters in my living room .  I locked myself in the tent with a phone and flashlight for about 16 hours a day for 9 months. 

This helped, but one day, the skunk fumes got even worse and I couldn’t take it any more.  I moved into the back seat of my mother’s Chevy Impala parked in my parents’ driveway.  Even though I still do not tolerate the interiors of most cars, I did OK in this car because it had old vinyl upholstery, had not been smoked in, and there was no scented cleaners or perfume residues.

 

THINGS THAT HELPED

The first thing that put me on a path towards improvement was taking thyroid.  Early on, I discovered my thyroid function had gone down to almost nothing, but it took a couple months and failed trials before I was able to find a thyroid supplement I could tolerate.  My chemical sensitivities did not improve much, but I was able to increase the number of foods I could eat.  For several months I had only been able to eat three green vegetables and olive oil.  Now I could eat 6-10 foods, including rice and chicken.  That was a step in the right direction.

Another big help was getting an industrial respirator to filter air I breathed.  This allowed me to go to places that would have been impossible without it.  Sure, I got unpleasant stares and occasional rude comments, but I didn’t care, because I was so excited to get out in the world again after living in almost total isolation for two years.  My new motto was “never leave home without it!”

 

PESTICIDE

For most of the past 20 years, I have lived in a house, except during a few housing catastrophes that sent me back to the car or yard.  The most notable was in 2001 when my house became contaminated with trace amounts of the pesticide deltamethrin tracked in by a new housemate.

Deltamethrin was the most sinister pesticide I had ever encountered.  My experience was much worse than when chlorpyrifos that had contaminated a previous house.  At first, I did not react to the deltamethrin, but I became sensitizied to it after a couple months.  After that, I got a severe headache, tremors, nausea, and burning skin when exposed to unbelievably small amounts of it.  I also found that deltamethrin was impossible to get rid of.  I ended up losing my house and most of my belongings.  (Regrettably, this pesticide is becoming more popular with pest control companies and is contained in home and garden products that can be purchased by the public.)

SAUNA

In 2003, things went in a more positive direction when I started doing infrared saunas.   A chemically sensitive friend told me it had helped her a lot and offered to let me use her sauna.  I decided to give it a try, since I could not tolerate other things that might have been helpful, such as herbs, supplements, and homeopathic remedies (which have to be taken by mouth).  Almost immediately after starting saunas, I felt better.  I had less pain, less sensitivities, more energy, and an increased sense of well-being.  Within a year, I was able to eat fifty foods instead of just ten.  My back improved and I was able to start walking and eventually take hikes in the mountains.

MORE THINGS THAT HELPED

Other things that have helped me include injectable vitamins and minerals, DHEA, glutathione, and female hormones.  I rub the hormones on my skin and take the glutathione intravenously.  The only substance I can tolerate taking by mouth is thyroid.  (It is important to note that while people with MCS have many similarities, we also have our differences and what worked for me may not work for you.  Treatment needs to be individualized for each person.)  

I tend to get low in nutrients even if I am eating a healthy diet.  When I start to feel worse –  and it’s not because of a chemical exposure — it usually means I have gotten low in a nutrient or hormone.  If I am able to figure out what I need and replace it, I usually feel better.

One of the main ways I have coped with having this devastating illness is by helping others.  I have tried to keep my focus on working to raise awareness and acceptance of MCS, reducing the use of pesticides and other toxic substances in the environment, and trying to make the world a safer and healthier place.

 

WHAT IT’S LIKE NOW

It has been a slow and difficult adventure, but after 25 years living with MCS, I am extremely grateful to have regained my current level of health and functioning.  I live in a house, I can work part time (from home), I drum regularly in local clubs, and I’ve even taken up ballroom dancing. 

 

 

There are more places I can go without having to wear a mask.  And more places I can go by wearing one.  For example, I travel regularly to California by plane to look after my mother.  And I can hike for 3 hours several times per week.  I was thrilled to be able to join my band mates in Santa Barbara in 2010 for a 25-year reunion of our band, Nancy Drew & the Clues (see videos below – that’s me playing cowbell and drums). 

I am still very chemically sensitive, but not at the “intensive care” level like I was.  I must still be careful to keep chemical exposures to a minimum.  I live in Santa Fe where the air is generally clean.  I eat only organic food and bottled spring water.  I use only unscented products and wear primarily cotton clothes.  I try to avoid pesticides at all cost and almost always call ahead to see if pesticides are used before going to a store, park, or club.

But by being as careful as I can to avoid chemical “landmines ” — as one friend calls them — and wearing a mask when I need to, I am now able to live a more full and satisfying life.  I realized the other day that there are probably people in my dance class who don’t even know I’m chemically sensitive.  Now that’s a miracle.

 

Edie Robertson (lead vocal), Lisa Lichtenstein (drums), Ann McCampbell (percussion, vocals), Susan Thomson (vocals),
                  Cheryl “Li” Walter (bass), Gretchen Wenner (guitar), Gisene Lohr (keys, vocals), Jean Richter (guitar)

 

       Edie Robertson (lead vocal), Ann McCampbell (drums), Susan Thomson (vocals), Cheryl “Li” Walter (bass),
                                             Gretchen Wenner (guitar), Gisene Lohr (keys, vocals), Jean Richter (guitar)