My Journey Into MCS, EHS, CFS – and Back

“Never take good health for granted!” This has been my mantra for most of my adult life.

Could a woman in her 70’s be active, energetic and healthy one year, and almost bed-ridden with debilitating medical problems the next? I would not have thought so, being blessed with good health most of my life, running my own small business, living with my husband and two poodles in our lovely log home, taking 5-15 mile hikes in the Maryland mountains, entertaining friends and traveling whenever and wherever I wished. But suddenly, everything changed.

Through a combination of factors, including stress, I developed MCS (Multiple Chemical Sensitivities), EHS (Electromagnetic Hyper Sensitivity) and CFS (Chronic Fatigue Syndrome), beginning in the spring of 2009 and reaching my physical and emotional bottom by the summer of 2010. By July of that year I was barely able to function, although I forced myself to get up in the morning, dress, walk my poodles and more or less keep going until early afternoon, when I would go back to bed for the rest of the day.

To summarize, under life’s stresses and my reaction to them, my autoimmune system broke down. Then my amygdala, the gland in the brain that responds to stress and danger, went into over-drive, secreting excess adrenalin and reacting to everything as a threat of equal magnitude. This resulted in multiple hypersensitivities and a multitude of symptoms. I became uncharacteristically fearful and anxious; the adrenal gland sensing my fear, re-doubled its efforts to warn me of danger (Fight! Flight!) – a vicious cycle had begun. For some sufferers these issues come from exposure to a virus, an overload of toxins, or other environmental factors, or from psychological causes. There is debate in medical scientific communities about the origins, causes and dynamics of such profound events, but agreement among those who experience them that they are life-changing and challenging in the extreme.

I first became reactive to certain plastics, specifically those used to manufacture water bottles, and to all products made from recycled water bottles (Polar Fleece, some commercial packaging, some vehicle interiors, selected medical devices, plastic grocery bags, etc.). This plastic is Polyethylene terephthalate ; the terephthalate, which is used to make plastics flexible, is a known toxin. I developed hives, rashes, bruises and almost unbearable itching. Cold showers and anti-itch creams and lotions helped only a little. Ultimately I was placed on two antihistamines, twice a day, which brought some relief.

This situation remained just manageable until the winter of 2010, when we were buried under 70 inches of blowing, drifting snow on our mountain. I was in an enclosed space with plastics and electronics almost 24/7, and the sensitivities bloomed. By spring I was sick, by summer I was desperate.

I was reacting to electro-magnetic fields, which include cell phones, WiFi, cordless phones, computers, handheld devices, lights (most especially florescent lights) and light sockets, TV, DVD players, telephones and jacks, microwave ovens, microwave and cell phone towers, overhead power lines and ambient electro-magnetic fields in the atmosphere around me. The symptoms included a crushing headache, terrific pressure on my chest, blurred vision, and a generalized feeling of illness, coupled with fear and anxiety, as the adrenalin coursed through my body.

During this time I developed every symptom associated with Chronic Fatigue Syndrome (CFS). These include depression, erratic blood sugar, inability to focus, short-term memory loss, insomnia, inability to taste accurately, weight loss, muscle pain throughout my body and an extreme, unceasing fatigue.

My internist, an allergist, and a specialist at Johns Hopkins Hospital were baffled and unable to help me. I had tests I had never heard of and tried medications that often made me feel worse.

I believe in the power of prayer. All through this ordeal friends and friends of friends prayed; my own prayers usually consisted of “Help.” I didn’t ask “Why?” I believe that some things are given to us to pass on our experience, knowledge and hope to others. The priority was, how to stop the deadly progression before it caused neurological damage. I battled self-pity, refusing to assume the role of a Poor Me victim, and innovated hour by hour, discarding toxins, pulling plugs from the walls… anything to keep things from getting worse. Then I found Richard.

Richard Conrad is a telephone consultant for people with hypersensitivities such as mine. His own problems are chemical-related, but he has studied other issues too. His approach is a combination of technical advice (Turn off as much electricity as you can, at the breakers, discard all those toxic materials, only use the computer for an hour in the morning, no cell phones, no WiFi, etc.), and emotional support. He spoke with our electrician about how best to adjust the breakers and with my husband at length about how best to help me day to day. We spoke on the phone frequently for several weeks.

It is known that 80% of the spouses of people with these sensitivities leave! My husband stood by me, suffering agonies of concern and fear for my health and my sanity – and for my survival. He was uncomplaining about this retro-lifestyle of primitive lighting and limited communication. Together, we rediscovered books. Friends called, wrote and visited briefly, dispensing hugs and supporting me with their love. My web site clients stayed with me, patiently waiting as I worked on their sites for only one hour in the morning – my absolute limit on a computer, and only on a laptop.

At the low point in this progression, July 2010, following Richard’s suggestions, we had hard-wired phones: my daughter and her partner came from the UK and, being an innovative and resourceful women, rewired the phone lines to the outside of the house, bypassing all the jacks. Our electrician spent many hours in our home, helping me to identify all the breakers, turning off many and re-wiring others to relieve my discomfort while maintaining some semblance of normalcy in our lives. We had only essential electricity. I slept in a “clean” space, totally devoid of all electricity within the room or nearby. We became connoisseurs of un-scented candles and little book-lights, which, when snapped to the front of our belts, made us look like fireflies in reverse moving through our darkened house at night or on cloudy days. We bought a tiny AM/FM battery-powered radio to keep in touch with the outside world; if the speaker was facing away from me I could tolerate this radio for a limited period of time. I could talk on the phone for about 10 minutes, after which I would begin to lose my voice and remaining strength. I tried a speakerphone, but that caused pain. At my request our local power company sent technicians to check the breaker box and to scan the underground cables for any leaks or breakage; all was in order, eliminating possible issues in that area. They also reassured me that I could safely walk over the buried lines in our yard; the lines were buried very deeply and did not cause me pain or danger. I could, however, feel the emissions from a close neighbor’s powerful satellite TV.

My Hyundai SUV was completely lined with recycled plastics and strong electronics; we purchased a much less toxic Honda CR-V so that I could once again be driven to the grocery store, where my husband did most of the shopping and checked out, while I fled the chemicals and electricity in the building to wait outside. Even in this improved vehicle I rode wrapped like a mummy in scarves and shawls to protect me from toxicity that I could feel burning my skin. I spent a few hours each day in a tiny cabin I had purchased years ago and placed in the meadow behind our house. Only now did the true purpose of this seemingly frivolous whim become clear: it was now my sanctuary, completely clear of all my “enemies.” I lay in a lounger since I could not sit up for more than a few minutes. I had many blankets, pillows and books for comfort and company. Then I received a call from Carol.

Carol McDougal is a woman of enormous courage, with a dramatic personal history of MCS and with a mission: she seeks out and offers to help those of us who suffer similar afflictions. Carol gave me a key suggestion: “You might try getting rid of all the chemicals in your house…” – so simple, so obvious (although not to me), and ultimately, so effective. My husband and I filled trash bags with cleaning products, laundry and dishwashing liquids, waxes, etc., etc. – it is amazing how many chemicals abide in a house, creating a toxic stew even for those without obvious sensitivities. For me, they were deadly. Within a day I began to feel less uncomfortable, to breath more easily, to feel less oppressive fatigue. I replaced the essentials with white vinegar and water sprays and with Seventh Generation products, a very low-toxicity line of dish, laundry and cleaning items. A friend without sensitivities visited and said, without prompting “It feels better in here – have you changed something?” I had been given another clue to the mystery of my healing. Then I found the Gupta Program.

Ashok Gupta lives in the UK. He suffered a catastrophic attack of CFS in his 20’s, while a student at Oxford University. Over time, he has developed a program to re-train the amygdala and the brain to reduce the violent response to perceived dangers, and a series of relaxation and meditation techniques to compliment that program. He and his clients report documented success in helping to effect improvement and even complete healing in cases of CFS and Fibromyalgia. At Richard’s suggestion In August I began to work with the set of Gupta Program DVDs and, by early September, I had begun to perceive improvement: My fatigue lessened, the muscle pains decreased, other symptoms began to abate a little and I began to regain life. Later, I ordered an upgrade DVD and experienced even more improvement. Others using the program began to report improvement in MCS and EHS as well, and I found this to be the case for me too. I felt a flicker of real hope for the first time in many months. Then I contacted Ted.

Ted O’Brien is a Medical Qigong therapist, acupuncturist and director of the Maryland branch of the International Institute of Medical Qigong. After trying other alternative methods of treatment in addition to the Gupta Program, I asked Ted to give me a series of Medical Qigong treatments. Qigong is an ancient Oriental methodology; the practitioner assists the patient by redirecting, cleansing, and restoring the patient’s vital energy based on the principles of Chinese Medicine. Over the course of months another missing link in my journey to healing was revealed. As Ted worked weekly to improve and balance my Qi I regained renewed energy, appetite and enthusiasm for life. The remnants of depression lifted and my symptoms decreased even further. I began to live a much more normal life while rejoicing at each little victory over my symptoms, and giving thanks for every improvement.

At this point in my journey, 30 months after the assaults on my system began, I am able to shop, dine in restaurants, visit friends and entertain in our home. I can drive or ride for 2-3 hours in my car and some other vehicles, tolerate most doctors’ offices and labs when necessary, and hike for limited but increasing distances. We have more breakers on during the day (I still sleep in a totally “clean” room to facilitate ongoing nighttime healing, the most critical kind), and use a small DVD player and a larger radio. Although our phones are still hard wired they are plugged into jacks in the rooms. TV is on the horizon, as is a trial run on Amtrak, with a long-term goal of visiting my beloved New York City again. Every day still seems like an adventure, as I add new capabilities, while being ever conservative in my use of electricity and computers and continuing to avoid toxins and those specific plastics. I monitor and moderate my activities to avoid exhaustion, while continuing to build my endurance. I continue to use the Gupta Program and to have Qigong treatments. I take a few supplements and vitamins and my antihistamines (for now), and regulate my diet. I have located a new program even more specifically targeting all three of my sensitivities, also available on DVD, which I have now begun to practice.

I have been very blessed. Not everyone who develops severe hypersensitivities is able successfully to return to a more normal life, free from the worst of the symptoms and limitations.

For these miracles, my very human angels, and the arcane techniques that have given me life again, I credit the prayers of friends and family, pointing the way to healing by circuitous paths. I asked for help and it is my personal belief that I was shown wherein it lay. These tools are available to anyone, but I needed a little “divine navigation” to lead me to them when I was too sick and defeated to search for them unaided. It is my sincere hope that my journey will be a roadmap for someone else’s healing too.

If ever I had taken my good health for granted, most certainly I do not do so now, and I do believe that “Whatever does not kill me makes me stronger.”

A NEW CHAPTER – November 15, 2011

Having reached a plateau in my healing process I investigated a program for brain retraining called the Dynamic Neural Retraining System™ that was mentioned in an inspiring article in the New York Times one Sunday. This program was designed and implemented by a woman named Annie Hopper who had been afflicted by several of these hypersensitivities. She was a trained therapist and therefore was able to determine that her hypersensitivities were brain-related, and to devise a method of addressing the entire limbic system of the brain to alter and normalize its responses to perceived stimuli. At this very moment in time, when I was searching for further help, Annie Hopper released a set of DVDs, incorporating sessions from a three-day seminar that she offers in various cities in the US and Canada. As I am still unable to travel I ordered the DVDs and began to work this program.

To summarize briefly, Annie Hopper’s approach to hypersensitivities of the sorts that I have experienced is to consider the entire limbic system of the brain: The amygdala, the hypothalamus, the hippocampus and the frontal lobe. Her program requires daily exercise and practice involving a series of very detailed steps, repeated several times in the course of an hour, every day for six months. The DVDs illustrate the reasoning behind this intense, repetitive practice, which is based on solid scientific facts and constantly evolving knowledge, and show the seminar in progress, as well as inspiring testimonials on the 3 rd and final day, from the participants. She suggests several books that are relevant to this brain work, one of which, The Brain That Changes Itself, by Dr. Norman Doidge, is reason enough to offer hope to anyone with any brain-related issues. I plan to read others on her list as well.

One of the great positives to the Dynamic Neural Retraining System™ is the availability of assistance and support online and by phone, something that was not available to me with the Gupta program. Annie Hopper and her assistants have set up an online “community” where registered members are encouraged to post their experiences as they progress toward healing from their many hypersensitivities, and ask for help regarding points about which they are uncertain. The supportive and positive atmosphere on that forum is invaluable, especially to someone who cannot attend live seminars. I have benefited immensely in the two weeks that I have been working with this system.

One of the many short-term goals of the program is to expand one’s capabilities in the presence of “triggers” that have, in the past, resulted in massive over-reactions in the limbic system. In my two weeks work I have activated two additional breakers in the house, and ridden in a vehicle that is the twin of the one that I was obliged to sell due to my intolerable reactions to it, with virtually no reaction.

The program is based on the premise that six months of dedicated and diligent work with the exercises and gradual, intelligent expansion of one’s life-boundaries will be the key to complete healing. I am absolutely willing to invest as much time as necessary to achieve this prize.

My journey continues!

PROGRESS! – March 2012

I have been working with the Dynamic Neural Retraining System™ program for just over 3 months. In that short time I have begun to see exciting progress. One of the keys to this, in my belief, is Annie Hopper’s gentle but firm insistence on expanding one’s “comfort zone”, adding back electricity, chemicals, etc., in a mindful and intelligent way, using the program to eliminate the fear and avoidance that was typical of our response in the past. The other major factor in my progress has been the forums on the DNRS web site, which are overflowing with accounts from people working the steps of the program in all sorts of situations which would have challenged them intolerably in the past, and which they are now coming through victoriously. There is very strong emphasis on positive attitudes and enthusiastic support… something that is often lacking in the lives of those who suffer from these sensitivities – particularly when there is no supportive spouse or loving friends as there are in my life.

I have committed to 6 months of daily practice, as well as applying the program in every situation that causes significant symptoms, day to day. We now have most of the normal electricity on full time in the house, with no effect on my body. I am able to tolerate some chemicals too, although I tend to steer clear of intense smells and notably toxic things, which seems more like common sense than avoidance to me!

My most dramatic victory to date was spending time in an airport waiting for friends to arrive. I have always loved the bustle and kinetic energy of airports, but was unable to tolerate the powerful electricity and many chemicals there for years now. In January I was able to wait comfortably, working the steps of the program in my mind when I felt a reaction begin; the reactions faded away. I was filled with gratitude and joy!

I was able to achieve my primary short-term goal: I watched the Westminster Kennel Club dog show on satellite TV – and saw my daughter, with her camera, working the ringside! Next goal, a train trip, sometime in the not-too-far distant future – and of course, the remaining breakers in our house!

Most days are not dramatic, most changes are subtle, but they add up to the picture of a woman returning to “normal”, rejoining life. I continue to use certain aspects of the Gupta program, combined with focused study of Annie’s method, with steady, gratifying and life-giving results. I owe my life to these wise and innovative people who are forging new trails through the dark maze of pain, fear and confusion that is life with extreme sensitivities.

Hope is a precious gift; thank you Ashok and Annie, for the gift of hope!

Onward!

The descriptions, the explanations of the various sensitivities, their causes and complications are mine, based on my own ongoing research and experience. There are many and sometimes conflicting theories about these topics and not all articles, neither scientists nor medical professionals, always agree. New knowledge is being added and old beliefs are falling. I do not propose to be an expert in any sense, but only to tell the story of my own journey and, perhaps, to offer hope and guidance to someone else. I am constantly learning, refining and expanding my understanding of this experience and the contributing factors involved. My journey continues. – LW

read Linda’s full account, including recent updates to her story

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