From Pat Jones, Joshua, Texas

My problem with chemicals started in February 1997. I had a major reaction to acetone that was spilled at work. There were several chemicals that were being used at the same time by several people. I had worked at my job for 18 years and we had never been given any instructions about the chemicals that we used. We were not provided with gloves, ventilation or fans to help disperse the fumes. We had our hands in these chemicals and breathed the fumes almost every day.

On that day, I started having trouble breathing so I went outside to get some fresh air. After a few minutes I started shaking all over and suddenly sobbing uncontrollably. Later a co-worker came out and found me and I was taken to the ER. There I was given an EKG and chest x-ray. They found nothing wrong with my heart even though it was beating very hard and irregular. They found fluid in one of my lungs. I was given antibiotics for pneumonia. I had not had any symptoms of pneumonia, no coughing, fever or trouble breathing. I was referred to an occupational health clinic for more evaluation. They took some lung tests and diagnosed me with restrictive airway disease. The doctor told me that I had chemical pneumonia. He referred me to the Environmental Health Center in Dallas for more tests and told me to wear a mask with an air filter at work. He said it would not keep out all the fumes but it would help.

I went to the Environmental Health Center in Dallas to be tested. The tests are done in an airtight booth. First I was put in the booth with a bottle of some kind of chemical with the lid screwed on tight. The door was closed and an exhaust fan was turned on for 20 minutes. Then the fan was turned off and I opened the bottle. The technician sat outside the booth and observed me for 20 minutes. She asked me several times to describe any reactions that I was having and she wrote down what I said. She also observed me for any outward signs of a reaction. After this time was up, then I came out of the booth and sat in a little room for 30 minutes and she continued to observe me for any delayed reactions. She would write down anything that she could see outwardly and what I would say about what I was experiencing (objective and subjective reactions).

They only tested me for one chemical each day because some chemicals have even a longer delayed reaction time and they wanted to make sure that I wasn't reacting to a chemical that I had been exposed to earlier in the day.

Booth testing is a double blind study regulated by the government with strict guidelines to ensure that it is as accurate as possible. None of the parties know what liquid is in the bottle. Sometimes it is just water so that there is no way a person can fake a reaction because they wouldn't know if it was water or a chemical. The technician can't know because they may unknowingly give an indication as to what the bottle contains.

The testing took about two weeks. One test had to be repeated because the technician forgot to turn off the exhaust fan before I opened the bottle and we didn't notice it until the test was over and she opened the door for me to come out. Another day she canceled the test because I had been sneezing all morning and had itchy, watery eyes. They never took a chance that any reaction could be caused or made worse by an exposure to something that I had been around before the test started that day.

After all the tests were done, I met with the doctor and he told me what I had been tested for each day and read the notes for each test. On two days water was in the bottle and I had no reaction on those days. All the other days, when chemicals were in the bottle, I had a reaction. Some of the reactions were more severe than others. One in particular was so severe that the symptoms lasted for several days. It just happened to be the last test. I had heart palpitations so severe that when my heart beat it would hurt. It skipped beats, sometimes beat very fast but always pounding. I had severe spasms in my air passages and my whole body quivered inside. I also had a bad headache and shortness of breath. It turned out to be the chemical that had caused the same symptoms at work that sent me to the hospital.

I know that my symptoms are not "all in my head" since I have the test results to prove it. The chemicals that I was exposed to were petroleum solvents. All the doctors have told me that this is a spreading phenomenon. Once you become sensitive, it causes your body to react to all kinds of products, especially petroleum based ones. But it spreads to cause reactions to various scented products such as cleaning products, soaps, air fresheners, perfumes, colognes, after shave lotion, paint, varnish, gasoline fumes, etc. A lot of these products are petroleum based anyway. It even causes reactions to natural scents such as flowers. There is no treatment available except avoidance. The more often you are exposed to any of these products, the more severe the symptoms become and more damage is done to the air passages. Lung damage is caused by long term exposure and the lungs lose some of the elasticity which makes breathing more difficult.

I was also given a series of blood tests and xylene was found in my blood. The doctor wanted me to stay off work for 2 weeks and then test again. That time the xylene was gone so I was still absorbing the chemical even though I was wearing a mask with a filter. He told my employer that I needed a place to work that would be free of all chemicals. They could not provide that so I quit my job.

About 6 weeks later, the quivering inside my body stopped. It was a feeling like the shivers that you get when you are cold. I had had this quivering inside for a year and a half before the reaction in February. I did not even think that it was connected to the chemicals I was using at work. I had been to several doctors that thought it was low blood sugar but the diet that they put me on didn’t do anything for the shivering. Now when I have a bad reaction to perfume, cologne, after shave lotions or cleaning products, I get this same shivering in my body.

I have been to five different doctors and they all tell me that there is no treatment for this condition except avoidance of all scented products, including cleansers, paints, varnishes, gasoline fumes and anything with a petroleum base. They call this Multiple Chemical Sensitivity. I had not ever heard of this condition until I went to the Environmental Health Center. One doctor explained it as a spreading phenomenon and can even cause reactions to natural scents. This has happened to me as I have reactions to flowers also.

When I have a reaction, it can be just one of many symptoms or all of my symptoms combined. I never know when I am exposed to something what kind of reaction I will have. These are some of the things that happen to me: I have heart palpations, quivering inside my body, headaches, difficulty breathing and have to use an emergency inhaler, sinus pain and burning in my sinuses (when this happens, my nose will bleed the next morning and sometimes for a week before it stops), my lips and tongue get numb, the right side of my tongue and throat get numb and later they are very sore and sometimes the glands on the right side of my neck swell. Sometimes I suddenly get very weak and my muscles start hurting all over like I have just done a lot of exercise. When this happens, sometimes I have uncontrollable sobbing. When I am exposed to something, I don’t always have immediate symptoms, as it is common with this illness to have delayed symptoms. The doctors have told me that the shivering or quivering is caused by central nervous system damage. The symptoms usually last for two or three days but a major reaction will last for about 2 weeks. After a reaction, I am very weak and tired and have trouble staying awake during the day. I feel like I am trying to wake up after an anesthetic. Then I don’t sleep well at night.

When I am around a lot of people and they all have on different scents, then I get a major reaction because each different scent causes a different symptom. Most colognes, perfumes and after shave lotions leave the scent in the air for 15 to 30 minutes after a person has walked through an area so it is very difficult to avoid these scents unless I just stay at home. In our home we use no scented products, but things like shampoo, hair spray, deodorants and soap that other people use do not bother me because the scents are gone when the product is dry. They are not usually meant to linger. I shop at Wal-Mart for groceries because it has big open spaces and only go about every 2 weeks. I don’t go to the mall.

At the feast, I had to leave a restaurant because one of the servers had on strong perfume. She wasn’t even waiting on us but had to walk close to our table. I waited in the car while my food was prepared to go since we had already ordered. This has happened several times at restaurants. Either the servers have on strong scents or they seat a family at the next table after we have ordered and I have to go.

For the last two years at the feast, I have met several people that have this same condition. They have the same severe reactions that I have to the same products. They live very restricted lives also. We had a room at the feast where we could watch the services but none of us met any new people except the ones in the room. One man that didn’t have the same degree of symptoms as his wife couldn’t even sit in the auditorium. I know several people that have some of these same symptoms but not to the same degree that I have and others that have a very difficult time on their job or at church. I think this will affect more people as time goes on because of the petroleum used in so many products.

I turned on the radio one day and happened to hear a talk show about men’s aftershave lotion. Every caller was a man and they were all complaining about the strong scents used in the aftershave lotions. One man said he thought all offices should be made scent free just like they had been made smoke free. All were complaining about the headaches and sinus problems and other symptoms caused by breathing all the scents all day even though they didn’t wear it themselves. One caller said that he was a chemist that worked for a company that made aftershave lotion for men. He said the reason that the scents were so strong and lasted so long was because they had gasoline for a base. The gasoline was used to make the scent last a long time and he said that if the scent wasn’t so strong they could smell the gasoline. So he said the men wearing these aftershave lotions were breathing gasoline fumes all day.