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Personal Stories

The perspective and experience of persons close to
those with Multiple Chemical Sensitivity or Environmental Illness
Environmental Medicine Helps Child
with Tourettes Syndrome

Hello, I think this may well have been the longest winter of my life. I feel that I have fought a battle. But, I'm strong and think I may have found the right answers for my son. My love for my son and God has seen me through. My son Matthew, is 5 years old. He was diagnosed with Tourettes Syndrome in January. I thought from the start that it seemed very suspicous that his symptoms developed soon after we moved into a brand new house. The Pediatritions and Neuroligist that I took my son to to find some answers seemed to know very little about chemical sensitivities and allergies. I had to find my own answers.

My sister gave me the book, Is This Your Child?, by Doris Rapp. I began to find answers there. I began to make changes in our home. First, my husband found a new home for the stray kittens that we had taken in earlier in the year. I bought air purifiers and also opened the windows daily( even in the winter) to air out all the new smells. I bought mattress and pillow covers for the kids beds. I stopped using laundry detergent and fabric softeners. I now use natural cleaners. I shop at the health food store for dish washer and dish washing soap. We plan to shampoo the carpets soon with a natural cleanser to help remove the harmful chemicals. I changed my sons diet. I took him off all chemical additives, preservitives and dyes. I also tried an elimination diet taking him off all wheat, dairy, and corn. Three weeks ago we had an appointment with an Environmental doctor who trained under Doris Rapp. Matthew was found to be allergic to dust mites, corn, wheat, sugar, milk, our dog, gas (we put gas heat in our new house), and formeldihyde (new house, carpet, furniture). I now have more direction then I could find myself as to what to eliminate from his diet. When I think about it, I can't believe the junk I was feeding my kids. So many products for kids contain dyes and chemicals...and we expect our children to grow on these??? It makes me sick!!!

I now shop regularly at the health food store. Changing our diet has been time consuming, but it is getting easier. We all take Shaklee vitamins now, and I've also added Flax oil and Cod Liver oil to our diet. We now eat fish atleast 2 times a week.

I'm still a work in progress, but I'm so happy to say that my son is doing so much better. We haven't seen a tic in three weeks. He looks healthier, his mood is better, and his appetite is great. We give him allergy shots at home twice a week. I know that it is too early to say that this is a definite cure, but I feel very strongly that we will be able to keep contolling the tics with everything that we are doing. I hope this will help someone else find some answers.

Thankful Mom,
Robin A. Sears

When a Friendship Endures an Illness
 
"I have a friend who is an MCS/EI.  We met in the mid-80s at a community college in California.  I'm not sure that either of us knew what we were doing in classes for 'women in business,' since we were both artists who liked to laugh a lot.  She was going through allergy testing at the time; I so was impressed by this person who could eat peas and avocados for a whole week and not complain one bit.  I was divorcing my "soul mate" and she was a willing listener who gave me optimism.
 
As time went on, her illness advanced.  I visited her at her beach campsite one Christmastime and it was then that I began to realize the seriousness of her struggle.  She moved to the Southern California desert, and we stayed in touch by U.S. mail.  She moved to Death Valley.  I moved.  We lost contact.
 
And then -- almost magically -- last year I received one of those miraculous e-mails, the kind that springs up from nowhere.  She'd written to every person in the country with my name and had found me in Washington,D.C.!
 
We've resumed our friendship, albeit a 'virtual' one. We're so-so correspondents as we both lead busy lives, but every once in a while the laughter rings out in cyberspace as we share a joke or two. I'm so grateful for the Internet and e-mail.  Through it we can communicate with words, images and humor."
Anna
6-01

A Spouse' s Rigorous Regime

By Jim Montagne October 17,1994

In loving memory, to Jim Montagne, this is an exerpt from his letter to a friend, that shows the level of sacrifice and dedication that he had for his wife Pam.

MCS is a disease that changes the lifestyle. Not only does it change the way one afflicted with the malady lives, but it drastically changes the way spouses exist.

The rigorous rules for a mate can be exasperating beyond the bounds of the "sickness and health" pledge. Bathing becomes a chore. Every excursion into the "real world" means another shower and change of clothing. The clothing itself must be 100% cotton - no polyester or other synthetic. Dry cleaning is an absolute no-no. Wardrobes shrink and dress clothing is a thing of the past. Shoe shines are verboten. Leather is usually not tolerated. Expensive sneaker type shoes have way too much chemical smell. Fortunately K-Mart tennies are usually tolerated after a prolonged sun bath in the open. All fabrics must be washed in powdered milk solution to remove the formaldehyde. Then multiple baths with vinegar and baking soda will sometimes make them tolerable -- but not always. 100% cotton jeans, shorts , T-shirts and sweat shirts are about the only things that can be worn. Ties are not a problem anymore -- thin or wide they cannot be tolerated. The wind may not be so ill after all.

Not be tolerated means anything from a mild headache to convulsions by the MCS victim.The cuisine of the EI mate is limited by association. Garlic and onions being cooked cause reactions. The smell of fried red meat is not tolerated. Most EIs consume a modified macrobiotic diet and usually use some form of food rotation. The limitations remove pizza, lobster thermidor, hamburgers, soufles, ice cream, Napoleons, donuts, sour dough bread, cows milk, sausages, ham, steak, Kentucky fried, baked beans, mussels, most cheeses, leg of lamb, eggs, and almost any other normally ingested foodstuffs.

Automobiles must be carefully prepared. Some EI sufferers require all fabric to be removed -- headliners, carpets, seats except for the bare springs. Oxygen must be available either from a tank or liquid oxygen supply or from a concentrator. A concentrator require a 500 watt inverter to supply 110 volt house current. Also needs a large battery - a truck sized 4D or 3 regualr heavy duty car batteries in the deep cycle versions. An air filter must also be supplied. Then, by wearing a carbon filter type mask we can go on a journey. Being in a car requires complete clothing change and a shower at the end of the journey.

Soap is a touchy thing. Different EIs tolerate different sops. Basically none can tolerate perfumed scents. But soaps containing glycerin can cause convulsions. Some can handle AFM soaps and products. Others can only use Granny's .

When a safe house is finally established, great care must be exercised to keep it safe. Newspapers are verboten. Books must be read in Ziplock type plastic bags. All new items must be outgassed and carefully cleaned with baking soda and vinegar.

Please Note: To those new to understanding MCS/EI, this description is good for an overall view, but the constraints vary from person to person.

 


Husband Makes Home Improvement
for MCS a Success! 

We moved out of the house. We had it stripped, gutted and rebuilt with the most neutral products we could find. We removed all known or suspected problems for us, such as fabrics, furnature, beds, curtains, etc. We removed all out-gassing wood products. Anything moulded, glued, or treated with any form of chemical. We drywalled the entire house {I recommend this, if it can be used by the affected person} We used Duvoe exterior gloss latex enamal paint.After 45 days, it was tolerated well by Doris, but I do not suggest this for everyone.The reason we used gloss paint is because it is extremly tough and easy to clean. With gloss white one can see every speck of dirt. 

For the filter system, I went to commercial shops, hospitals, and manufacturers to have our system designed. We use two pleated pre filters, one hepa filter, one 6 inch carbon filter and one .0003 micron 10 inch hepa filter. I was told this was designed for an IBM clean room.  It takes 2 blowers to power this system and they run 24 hrs. per day .  We also built a separate entry where every one is sniffed by me before they are allowed entry.  No exceptions. We have no fabric, no curtains.  We have unfinished wood furniture and floors.  It’s quite rustic if you like that sort of thing.  The more Doris improves, the more we love it........

The folowing explanation is about the scuba mask that his wife uses to breathe:

I must tell you though, with Doris, there were two major draw backs. One was the extreme dry air in the tanks.  This was overcome with use, time and talking to scuba divers.  The second was the hardest.  Ego or pride on Doris's part --she felt strongly that people were looking at her like she was a freak. It took a while for her to realise that she has right to a life, too. All those problem makers can just get out of her way.  Now, we have a great life-. with its limits, yes.  But it’s life, none the less. This truly works if it is air borne chemicals, and not contact with them, that bothers you.  My wife has used this for years now with great success.

The daily cost is nothing compared to the cost of Doris's maintenance doctor and drug cost.  We found out prevention is a lot cheaper and oh, so much better.  For her present drug intake, she takes one half Clariton a day, unless she is starting to have a problem. It is not severe like it once was.  

For those who can’t go to this extreme, we did remain on bottled air 24 hrs. a day here, in San Antonio.  The cost is approximately eight dollars per day. Doris uses only scuba tank air, now.

She uses one tank, one regulator, one flex airhose, one mouthpiece or face mask. The expense of using bottled air would be too great for anyone to afford. Two simple scuba tanks and equipment that guarantees fresh clean air. 

A small tank will last approx 45 min.  A larger cart tank 80 cu. ft. will last 8 hrs. on full time use.  The cost is around 600 dollars for set up and two, 20 cu. ft. tanks.  The only hard part is finding someone with a licence to get all this for you. In my case, a lot of begging from a helpful dealer.  

The scuba tanks are just room air that has been extremely purified through an amazing filter process, pumped into tanks at 3000 pounds of pressure.  Scuba shops are a highly regulated business that I've found to be mostly compliant. The air to oxygen mixture can be custom set at good shops. We prefer to use separate oxygen tanks. The system we built had a scuba tank, oxygen tank, water vapor mister, a separate valve so we could hook up nebulizer if needed, and a heater to warm the cold air.  By the time I finished, the first system  it looked like a crazed plumbers nightmare. 

May the health of all, reach a level where a quality of life can be enjoyed.                                               

If there are any questions, I will answer the best I can. GOD BLESS.  

E mail: scissortail@devtex.net
Clarence and Doris

Editor’s Note:  Anyone with MCS/EI should consult with their doctor and test all products carefully before using.


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