Janet's Story (Reprinted with permission of Townsend Newsletter for Doctors & Patients, Issue No. 210, January 2001; 360-385-6021)     PATIENTS WITH A MYRIAD OF STRANGE SYMPTOMS ARE NOT CRAZY OR STRESSED OUT. JUST ALLERGIC. I had never been a particularly strong or healthy child. After I learned to swim, I began having chronic ear and upper respiratory infections for which I took sulfa and penicillin. Before the vogue of ear tubes, my ear drum was punctured a few times; then I had x-ray treatment on my eustachian tubes. Later I had a polyp removed from that same ear and, later yet, a mastoidectomy. But I am getting ahead of my story. Even though I was often sick and never felt good, I had many interests and kept busy. I first became alarmed that I might have serious health problems when my natural athletic ability began to fluctuate and degenerate in my late teens. For example: The first time I water-skied, I came right up out of the water, and I quit skiing only when I got tired. The second time, I even practiced dropping one ski. But the third time was embarrassingly painful--embarrassing because I couldn't even get up on two skis, and the falls were very painful. The fourth time a friend said he would take time and work with me. He thought I was probably trying too hard. He was very patient, however, I could not do anything right and I had to quit when I injured myself in one of my super-duper falls. It was also alarming that I began having a problem with pain. I had always enjoyed playing volleyball and I had a good serve. But I had to give up playing when just hitting the ball or serving one time would cause my hands and wrists to hurt for hours. I found it excruciatingly painful to try to do exercises in my body mechanics class while sitting on the floor, or to lean my head back on the sink to have my hair washed at the beauty salon. As I continued to add more and more symptoms to my repertory as the years went by, I felt very fortunate to be able to put myself through college by working full time at the student health center because medical care was convenient and free. My chart became very thick, but none of the medicines helped me--most made me worse. I vividly remember that the Antivert I took for vertigo made me so dizzy I almost passed out. At the age of 21 I was referred to an arthritis specialist after a slightly positive blood test for rheumatoid arthritis. After his exam, I was advised, "If you have as much pain as you say you have, you should go to a psychiatrist." Soon after seeing the arthritis specialist I had mastoid surgery and then a tonsillectomy for chronic sore throats. My ear did stop draining, but I had much more dizziness, and my sore/dry, sometimes throbbing, throat (which often cultured out to be strep) continued for another ten years. In my late twenties I had new carpeting installed in my apartment. It smelled terrible. I could even taste it. And I could not sleep in my apartment for the first few nights. My chronic bronchitis, which started after my tonsils were removed, turned into viral pneumonia with green and yellow sputum. About that time I had an exterminator come after my use of Raid failed to stop the ants. Then my health plummeted. Over the following years, the extreme connective tissue/muscle pain, poor balance/coordination and other MS symptoms, cognitive problems, extreme fatigue, problems with digestion (constipation, vomiting, hemorrhoids, loose intestinal wall, nausea), hormones (dysmenorrhea and PMS), eyes (tearing, broken blood vessels, blurred vision, pain) and skin (cysts, adult acne, boils, seborrheic dermatitis, warts, athlete's foot, sties, cold sores, fever blisters, hang nails, itching, creepy crawly feelings), and infections (bladder, vaginal, throat, bronchial, upper respiratory) increased. My use of antibiotics increased as well, until I had an allergic reaction to Tetracycline which affected my liver and I ended up in bed for about a month. It was always a challenge to get up in the morning (had to roll out rather than sit up because of pain and weakness) following nights of little sleep. I slept with a pillow between my knees because of pain, I often woke up during the night with hand and feet numbness and back spasms, and I had to walk the floor with leg cramps. I also experienced terrible nightmares, and sleep-walking and talking. My bladder incontinence was always more of a problem at night as well. Then there were the nights I had to get up to vomit and the mornings when I would wake up with the room spinning after having gone out to dinner the night before. I always just blamed this on bad food. It became painful to hold a wash cloth in the shower and to wash dishes, to stand long enough to wash dishes, to walk up and down stairs, and an occasional torticollis (neck spasm) did me in for several days. As my sense of smell increased, my sense of hearing decreased (except that my own chewing of food became very loud and I thought everyone could hear me chew). In my early thirties, I advanced to experiencing "psychological" symptoms. I began washing my hands a lot and was compulsive about checking and rechecking whether the stove and iron were off and the door locked. I now realize that the OCD was caused by my short term memory loss. I couldn't plant the memory that I had checked something. I also began to lose my keys or lock them inside the car or apartment and I let my car run out of gas quite often. I developed some depression, irritability and, even, paranoia for a short time. I could not concentrate long enough to read and understand one paragraph in the Bible or to pray. It became increasingly difficult for me to type because of poor coordination and cognitive function, and I came to a point where I did not see how I could work any longer. (As I share this story, I wonder how I worked as long as I did!) I continued to see specialists, and search for a diagnosis in the Merck Manual, but since this was before Environmental Illness (E.I.), Chronic Fatigue Syndrome, and Fibromyalgia were being diagnosed, I had no basis for seeking disability and had no other support. With the advent of the "psychological" symptoms, I finally gave in and went to see a psychiatrist at the age of 34. How fortunate I was that he believed my symptoms were physical. He sent me to a specialist who "majored in puzzles." But, when baffled by my normal blood tests and contradictory 24 hour urine tests, the specialist suggested having sex as the solution. (One chronically ill woman I know who was a wife, mother, and grandmother had been advised by a physician to have sex twice a day! She was correctly diagnosed as food and chemical sensitive later.) After I explained my Christian belief about abstinence for singles, besides my FATIGUE and total lack of interest (my desire had also fluctuated to extremes over the years), he countered with "If you would get your crooked tooth fixed, you might feel better about yourself." I had never even given my crooked front tooth a thought, and I had a high regard for myself. Especially for being able to keep going under the circumstances of my health problems. So much for the puzzle-solver. Through counseling and prayer with my pastor, I found out about hypoglycemia and found a doctor who treated it. In a five-minute visit, I told her that I was a "complete physical and mental basket case and had had about every test there was." She asked me if I had any allergies. I remembered that milk made my face break out and some perfume gave me a rash just where it was applied. She decided I need to take one more test: a RAST test. The test showed I was highly allergic to foods I was eating every day. I was surprised because I had never had hay fever or the usual allergy symptoms, and no foods seemed to bother me (except for the time I got hives from eating too many apricots as a child). And, who would have believed that food allergy could have caused all the problems I had? Later intradermal testing showed I was also somewhat allergic to hydrocarbons. It was wonderful to know there was a reason for my degenerating health and that I could get better. And, as time went by, I could look back on my life and clearly see why my health was better or worse depending on my diet and environment. I now knew why the five-hour glucose tolerance test just about killed me and made me sick for days. The doctor said the test results were not significant--but the drink was concentrated corn syrup, and I was highly allergic to corn! And since most medication contains corn in some form, it made sense that medicine, including my pain killers, made me sicker. It was also a revelation to learn people are commonly addicted to the very foods that make them sick (or they hate them). As I read more food labels and became more knowledgeable, I realized that not only was I most attracted to Mexican food, but that just about every other food I enjoyed contained corn. For example, my morning fruit was canned in corn syrup. The brand of canned stewed tomatoes and spinach I liked contained dextrose. My favorite lunch restaurant made their fries in corn oil and their bread contained corn flour. It was hard, but I did change my diet. And, once I stopped poisoning myself, I did get better! I no longer had chronic flus and colds, other infections, sleep and nerve problems during the night, sciatic nerve pain, or pains I thought might be heart attack, stroke or appendicitis. My jaw stopped clicking, I didn't bite my tongue or lips anymore, and I didn't even need my glasses for the astigmatism. As my vocabulary and other cognitive skills increased, my depression, phobias, and compulsions decreased. At church I could sit through the sermon without my rear end going numb, I could cross my legs without them going numb or asleep, I could rise and sing right away instead of having to wait to have breath (usually by the third verse), I could close my eyes in prayer while standing up and not lose my balance, and my left arm no longer trembled while holding the hymnal. And, it was with great joy, after years of not having balance or coordination or strength, breath or energy, that within six months of being on a strict diet, I was able to take up ice skating! My health improved dramatically. When I was first diagnosed, I thought I was the only one with these crazy symptoms and severe food sensitivities. Then I began to help other chronically ill people. I started a local support group in 1983. This turned into a nonprofit organization in 1987, and the organization serves nearly 4,000 people today. I so enjoy helping other people overcome their particular myriad of symptoms. My deepest regret, however, is not being able to reach people who have been diagnosed with Chronic Fatigue Syndrome and Fibromyalgia with the truth about this cause of chronic illness . I am grateful I found out about my food and chemical sensitivity before there were such established CFS and FM networks because, like these people, I might not have listened to the doctor when she suggested I have just one more test--a food allergy test. There has been some recent progress made in the CFS network. Dr. Paul Cheney, a CFS expert, is now recommending food elimination diets. "The more I get into the issue of diet and food sensitivities, it's obvious to me that the single most common antigen to which we are exposed is food proteins. Elimination diets, and improving digestion and gut epithelial function can pay huge dividends....I've seen people in 30 days have huge clinical responses simply by this very simplest of moves." On his web site, Dr. Cheney cites a German study which found that 88% of those CFS patients studied had Type IV food hypersensitivity. For those who will listen, I recommend provocative/neutralization or machine testing by an Environmental Physician; RAST and ELISA/ACT (by Serammune Physicians Laboratory) blood tests for immediate and delayed food sensitivities; keeping a diet/environment diary, and/or using an elimination or 4-day rotation diet. It has been twenty-two years since I took the RAST test. It is hard always to be on a diet, and I would rather be able to take a pill. But I have my life back. I work full time at a stressful job, Share, Care and Prayer, Inc., and on my days off I take care of my 90-year old father who lives 80 miles away. And, as I discovered, if allergens are not avoided, then the chronic illness is progressive, resulting in an increase of more and more debilitating and painful symptoms. It is my prayer that researchers will study how toxic chemicals can cause a person to become sensitive and then find out how to rebalance the body. I am sure that it can be done. Current study into just pain or just fatigue is not broad enough because chronically ill, sensitive patients react individually. One person who has become sensitive to wheat will have overwhelming fatigue and another cognitive problems and another pain. _______________________ * A study published in Otolaryngology Head and Neck Surgery in 1990 showed that 100% of the children with chronic earaches who underwent elimination testing and subsequent food elimination responded with resolution of their earaches and improvement in hearing.       HOME PAGE | Anyone can have EI | EI Resources | Bare Basics Diary Allergy/Sensitivity Symptoms | Material Order Form | Newsletters and Publications Janet's Story | Recommended Conferences | Healthy Families | Timeless Prayer EI Answer Line | Member sign-up form | Member Change of Address Form ONLINE BOOK ORDERING!