All about EI/MCS

WHAT IS ENVIRONMENTAL ILLNESS/MULTIPLE CHEMICAL SENSITIVITY (EI/MCS)?

 

Environmental Illness/Multiple Chemical Sensitivity (EI/MCS), also sometimes known by the terms Environmental Illness (EI), Multiple Chemical Sensitivity (MCS), Chemical Sensitivity (CS),Environmental Sensitivity, Toxic Encephalopathy, Toxicant- Induced Loss of Tolerance (TILT), Idiopathic Environmental Intolerance (IEI), is a complex, multi-system illness where sufferers are made sick by exposures to low levels of many common chemicals and other environmental triggers.

Many of these chemicals can make ANYONE sick at high dose exposure. However, chemically sensitive people can become EXTREMELY ill after exposures to even MINUTE amounts of these substances. Reactions can occur after chemicals are inhaled, ingested, or absorbed through the skin. Chemically sensitive people also frequently become reactive to other substances and common everyday items too, for example … foods, medications and supplements, mould spores and particulate matter, light, sound, electrical appliances and electromagnetic fields found in appliances, mobile phones and wireless technology.

The Environmental Protection Agency (EPA) definition is as follows-
“Multiple Chemical Sensitivity is a diagnostic label for people who suffer multi-system illnesses as a result of contact with, or proximity to, a variety of airborne agents and other substances.”

EI/MCS is a very serious condition which, along with potentially extreme and disabling symptoms, can also have a catastrophic and devastating impact on every area of the sufferer’s life.

WHAT THINGS MAKE PEOPLE WITH EI/MCS SICK?

 

Each person affected by EI/MCS may be sensitive to different substances and the level of hypersensitivity may vary considerably.

The most common substances that people with EI/MCS become disabled by include, but are not limited to … fragrances (the word ‘fragrance’ in a list of ingredients can contain up to 300 individual chemicals), scented products and candles, personal care products like hairspray and deodorant, pesticides, herbicides, fungicides, mothballs, bug sprays and flea bombs, second hand smoke, wood smoke, gas heaters and stoves, ink from newspapers/books/magazines etc, adhesives, plastics, formaldehyde, building materials & interior fittings like fresh paint, new carpets etc, dry-cleaned clothing, aerosols, tap water, cleaning products, washing detergents, dryer sheets, petroleum products, outdoor pollutants and particulate matter, types of wood, fabrics, clothing and bedding, preservatives and additives in food, ‘natural’ chemicals found in foods & essential oils etc.
Electrical triggers can include … internal wall wiring, appliances, TV, cordless telephones, mobile phones, computers, Wifi technology and lighting.

Environmental Doctor & Researcher, Dr Martin Pall states that …
“The exquisite sensitivity of many MCS people is most clearly seen through their reported sensitivity to perfumes. MCS people report becoming ill when a person wearing perfumes walks by or when they are seated several seats away from someone wearing perfume. Clearly the perfume wearer is exposed to a much higher dose than is the MCS person and yet the perfume wearer reports no obvious illness. This strongly suggests that MCS people must be at least 100 times more sensitive than are normal individuals and perhaps a 1000 or more times more sensitive.”

WHAT ARE THE SYMPTOMS?

 

The symptoms and severity of EI/MCS are diverse and unique to each person. Ranging from mild … someone may feel a bit of a headache around perfume or nauseous around petrol fumes … to seriously disabling & life threatening. Symptoms include, but are not limited to … respiratory problems, airway irritation, asthma, rhinitis, rashes, headache, fatigue, muscle weakness, anaphylactic reactions, feeling ‘groggy’/hungover/poisoned, nausea, vomiting, diarrhoea, dizziness, numbness, tremors, seizures, irregular heartbeat, joint and muscle pain. Neurological symptoms may also arise, as well as anxiety, depression and emotional outbursts. Symptoms may occur immediately after an exposure or be delayed by hours or days. Reactions may last from a few minutes to hours or even weeks or months.

HOW DO YOU GET IT?

 

Many people who develop Environmental Illness/Multiple Chemical Sensitivity, were once healthy individuals who tolerated chemicals and other everyday environmental factors like everyone else, until, they had an exposure from which they did not recover.

Most EI/MCS sufferers can trace the beginning of their condition to a particular time in their life, often a single, high level exposure. For example, some people develop EI/MCS after moving into a newly constructed or renovated house, having new carpets & furniture installed in their workplace where the ‘offgassing’ of organic solvents from materials is high (sometimes called ‘Sick Building Syndrome’), or after having their home sprayed with pesticides for termites, rodents or flees. (Namely organophosphates or carbamates.) Exposure to toxic mould and mycotoxins is also a common trigger as well as viral and bacterial infections & tick borne infections like Lyme disease can also be a contributing factor. However, there are small percentage who become ill slowly over a period of years, seemingly as a result of the cumulative exposures of everyday life.

Some sufferers may also have a genetic predisposition affecting enzyme function, detoxification pathways and/or xenobiotic metabolism making them more susceptible to developing EI/MCS.
Even some “Environmental events (exposures) themselves can dramatically impact gene activity,” explains reproductive endocrinologist, Frederick vom Saal of the University of Missouri-Columbia.

In the 1980’s, 225 workers became sick after the renovation (including the installation of 27,000 feet of new carpet) of the EPA’s headquarters in Washington, D.C.. Although most workers recovered, 19 developed severe MCS and became disabled over the long term.

Co-Author of textbook, ‘Chemical Exposures: Low Levels and High Stakes’, Dr Claudia Miller and her colleague, Dr Howard Mitzel, surveyed individuals who had become permanently ill after an exposure to organophosphate pesticides, and after extensive remodelling in the home or office. Dr Miller noted at the time of the group’s pesticide exposure, 26 of the 37 individuals were working full time. By the time of the survey (an average of about eight years after exposure), only two of the pesticide affected individuals were able to work full time. They reported that their illness had affected every aspect of their lives.

EI/MCS occurs in people of all ages, races, and economic backgrounds. Some occupations which involve chemical exposure, may pose a higher risk such as … agricultural workers and farmers, Gulf War veterans, pest controllers, office workers(sick building syndrome), solvent -exposed workers.

Dr Miller notes “new-onset intolerances and multisystem symptoms have shown up in sheep dippers in rural areas of Europe (sheep dip is an organophosphate pesticide), homeowners in Germany exposed to a toxic wood preservative, individuals breathing fumes from massive oil spills, radiology workers in New Zealand who inhaled chemicals while developing films, and individuals living or working in newly remodelled buildings.”
Dr William Rea of The Environmental Health Centre Dallas, notes a more recent rise in diagnoses with women exposed to home cleaning products and personal care products etc.

Besides chemical injury resulting in loss of tolerance or dysfunctional xenobiotic metabolism, some other theories to explain why certain people develop EI/MCS are Immunological Dysregulation, Respiratory Disorder/Neurogenic Inflammation, Methylation Dystunction, Limbic Kindling/Neural Sensitisation and NMDA Receptor Activity/elevated Nitric Oxide & Peroxynitrite.

THE SPREADING PHENOMENON

 

Multiple Chemical Sensitivity usually begins with a reaction to one or two kinds of chemicals or foods, but can then spread to many other triggers. The sufferer begins to lose tolerance to more and more of chemicals common in everyday life. This disturbing phenomenon is called ‘spreading’. The severity of reactions can fluctuate depending upon conditions inside and outside the body, total body toxic load or general health of the sufferer.

HOW IS IT DIAGNOSED?

 

Multiple Chemical Sensitivities (MCS) was first identified in the 1950’s by Dr Theron Randolf, an allergist and Professor at the University of Chicago, and in 1989, a published consensus defined clear diagnostic criteria for the condition as follows –

  • A chronic condition.
  • Symptoms recur reproducibly.
  • Symptoms recur in response to low levels of chemical exposure.
  • Symptoms occur when exposed to multiple unrelated chemicals.
  • Symptoms improve or resolve when trigger chemicals are removed.
  • Multiple organ systems are affected

Despite this, many cases of EI/MCS still go undiagnosed or misdiagnosed, sometimes for years or decades. It is very common for sufferers to have sought help from multiple physicians without any outcome. Many sufferers also report feeling ‘cast off’ as mentally ill, told they are imagining their symptoms or even labelled as a hypochondriac.

Currently there are NO clinical guidelines for medical practitioners to provide appropriate care for EI/MCS individuals AND, perhaps even more frustrating for sufferers, despite the existence of several dedicated Environmental Medicine Physicians and Clinics around the world and many countries’ official recognition of the illness, many doctors & health professionals are ignorant as to its proficiency and potentially devastating life impact and/or continue to deny its very existence.

Some countries still will not recognise Environmental Illness/Multiple Chemical Sensitivity as an official condition.

Some conventional tests and functional pathology which may assist medical investigation, diagnosis and treatment include – Immunological & inflammatory Cytokine Panel, Hepatic Detoxification Profile, Mitochondrial Function/ATP Study, Fat Biopsy, Kelmer Test, Gene Study, Methylation Function, DNA Adducts, Translocator Protein Studies, Blood Antioxidant & Nutrients levels, Fatty Acid Analysis, Stool Analysis, Hair Analysis, Organic Acids Urine Test, Food Allergy/Intollerance Tests, Viral & Bacterial Panels and more.

Although some EI/MCS patients suffer from traditional allergies & an allergic response to some environmental triggers, EI/MCS is not primarily characterised by the formation of IgE, but rather by cellular inflammation and impaired detoxification of “toxic” substances, such as solvents, petrochemicals, and volatile organic compounds (VOC’s) found in fragrances, air fresheners, cleaning chemicals, and pesticides which may lead to an elevated total body burden of toxic chemicals.

Dr. Claudia Miller developed a questionnaire ‘QESSI’ (Quick Environmental Exposure & Sensitivity Inventory) to help identify health problems that may be associated with chemical exposure, that is suitable for patients and physicians.

HOW DO YOU TREAT IT? CAN YOU GET BETTER?

 

There is no universal treatment protocol for EI/MCS. Some sufferers can reduce symptom severity and improve their quality of life with time and effective management. Some go on to recover completely. Unfortunately, a large percentage of people are stricken with symptoms indefinitely or continue to deteriorate further, experiencing greater & greater hypersensitivity. Mortality has been reported.

The most important factor in recovery is to locate a health professional with some understanding in Environmental Medicine or clinical experience with chemical sensitivity. At the very least, someone who is supportive and willing to learn.

The most common treatments prescribed for MCS are:

  • Chemical Avoidance
  • Chemical Free Housing
  • Nutrient Therapy
  • Detoxification
  • Other

Chemical Avoidance

Chemical avoidance is the most effective treatment for MCS. This means eliminating all chemicals or possible environmental triggers which could cause negative reactions. Avoiding further exposures reduces the total body burden of chemicals in the tissues and hepatic detoxification pathways. Failing to do so could cause sensitization to additional chemicals which were previously tolerated.

Chemical Free Housing

A chemical free home environment is vital. Areas of concern include – newly built or renovated houses, problematic interior fittings, furnishings, carpets, bedding, plastics etc, mould, cleaning chemicals, room fragrance, indoor & outdoor pesticides, electrical wiring & wireless devices, water filtration, gas heating/cooking, wood-smoke and more.

Nutrient Therapy

Improved nutritional status can reduce symptom severity and assist the body to better cope with chemical exposure. Antioxidants and nutrients that support immune health & modulation, liver function and detoxification pathways are highly recommended.
Patients with MCS can often suffer from malabsorption and/or food allergies/intolerances therefore good nutrition is vital and rotating foods and even brands of supplements to avoid further sensitisation may be helpful. IV & injectable forms of vitamins may also assist.

Detoxification

As many EI/MCS patients have suffered chemical injury and/or have impaired/dysfunctional/slow detoxification pathways, therapeutic detoxification may prove beneficial.

There are numerous methods of detoxification. All should be approached with caution under supervision and tested for individual tolerance. For example – sauna & FIR Sauna, chelation, dry brushing & lymphatic massage, baths/foot baths, fasting, colonic irrigation, coffee enemas, oxygen therapy, IV infusions, homeopathic and herbal remedies or nutrient support.

 

Other treatments with anecdotal evidence include-

Limbic Retraining, Chinese medicine & accupunture/acupressure.
Provocation/Neutralisation, Enzyme Potentiated Desensitisation (EPD)/ Low Dose Neutralisation (LDN), Nambudripad’s Allergy Elimination Technique (NAET), BIOSET, Auto-Vaccine, Vibrational & Energy Medicine, Psychotherapy & Counselling among others.

Misdiagnosis or Improper treatment and management of EI/MCS is often the component responsible for illness progression, general worsening of symptoms, the possibility of experiencing the ‘Spreading Phenomenon’ and an overall diminishment in quality of life. Therefore, correct diagnosis, health care and education is VITAL!

LIFE IMPACT

 

People with mild to moderate chemical sensitivities may be able to make adjustments in their diet & lifestyle, home & work environment etc and remain productive and connected to the outside world.
However, at its worst, severe EI/MCS can be an incredibly disabling, and isolating disease that forces people to alter every aspect of their lives.

Due to the vast number of chemicals and environmental irritants found in today’s modern world, in personal care products, cosmetics and clothes, in room fragrances & pesticides, furnishings and building materials found in almost every residential and commercial space – someone living with severe EI/MCS may be forced to isolate themselves from the world. Many live alone, separated from people and unable to venture outside into public places. Shops, schools, workplaces, parks, public toilets, transport, churches, government buildings, all become impossible to negotiate. Despite potentially urgent healthcare needs – trips to the hospital, doctor surgery or dentist become a thing of the past. Many sufferers become prisoners in their own homes.

Due to horrible and disabling reactions to these everyday toxicants, rewarding careers and enjoyable social lives disappear along with community activities or even basic interaction with friends and family. Many severe sufferers are forced to forgo hugs, affection and human contact (because of chemical residues of fragrances etc on others) in order to survive. Many EI/MCS sufferers report feeling ostracised by family, friends and the greater community labelled as “weird”, “crazy”, “difficult”, “hyperchondriac”. Along with losing relationships, many people can no longer tolerate their favourite possessions either … books, photographs, clothing, furnishings etc Many more cannot tolerate light, sound or the television, computer or speaking on a telephone.

For some people their sensitivity is so severe that they are unable to tolerate even the slightest exposure to any chemicals, as a result of which they have to live in carefully controlled clean environments like a purpose built ‘Saferoom’. There are many more who cannot locate any housing that doesn’t make them sick … some are forced to sleep on bathroom floors without bedding, some in cars, some in tents far from civilisation, many people are permanently homeless.

Not only do people feel horribly ill day in day out, but all the normal activities and joys of life can be stripped away too. Anxiety, depression and suicide are understandable adjuncts to this condition.

Other compounding considerations to note include a recent Australian clinical review which reported that people expressing symptoms of EI/MCS to Medical Advisors had NOT had their concerns listened to, that their concerns had been rejected or had their symptoms disbelieved. Another survey of Australian Medical Practitioners in 2006 revealed NO effective intervention, diagnostics or treatments in regards to EI/MCS with NO evidence forwarded for ANY medications, dietary or supplement requirements or ANY OTHER specialized treatments, education or support.

The isolation imposed by chemical barriers in today’s modern world, coupled with the sheer volume and diversity of triggers and complexity of the illness itself, is a challenge most healthy people can never imagine. This coupled with the clear lack of understanding from most Health Care Practitioners, Government bodies and the greater community along with minimal research, education, support services and effective treatment strategies available to EI/MCS sufferers, can contribute to the overwhelming hopelessness experienced by many patients and the often devastating nature of this illness.

A PERSONAL NOTE: A WAY FORWARD

 

I know firsthand the devastation EI/MCS can inflict on one’s life. Despite my dedicated efforts for a diagnosis, intervention and treatment, I was misdiagnosed and wrongly treated for two decades and my disabling symptoms and cries for help repeatedly dismissed. I tried for so many years to find a reason for my physical suffering and mysterious unexplainable ‘sensitivities’. I sought counsel from ‘experts’ everywhere and was shown the door on occasions too many to count.

Many people did not believe me … some even said I was imagining it all. My spirit broken on many occasions, I am sometimes amazed I’m still standing.

As a result of incorrect diagnosis and mismanagement, my condition progressed and deteriorated to such a dire state I was forced into a single controlled room environment, stripped bare of my possessions, surviving on a handful of foods, speaking with the occasional visitor through a glass wall. Could this have been avoided? Yes. With the correct help, information & healthcare, my life wouldn’t have turned out this way. But, this is NOT the end of my story.

Alone, fighting an invisible illness with all the joys of life stripped away is unfortunately an existence many people experience every day. But it shouldn’t be that way. This must change. We must change. I am a part of that change, and I will do what I can to make that happen.

IT’S TIME FOR SOME CHANGES

  • Official recognition for EI/MCS worldwide.
  • Greater awareness & education for the community about EI/MCS and its impact on sufferers.
  • Greater awareness & education of the dangers of the already large and growing number of potentially harmful and unnecessary chemicals found in products and everyday items in today’s modern world AND how to avoid them with strategies and resources for alternative products.
  • Clinician education program at a tertiary level and in General Practice to ensure correct diagnosis & management.
  • Clinical guidelines for medical practitioners to provide appropriate care and support for EI/MCS individuals.
  • Universal EI/MCS policies for Hospital and healthcare facilities so that suffers can safely access basic healthcare.
  • Purpose built/modified Environmental Medicine Units where EI/MCS sufferers can receive appropriate healthcare.
  • Purpose-built public housing using low chemical and inert materials and located in low pollution areas providing emergency or long term housing for EI/MCS sufferers in need.
  • Enforced equal rights via The Disability Act for EI/MCS sufferers to obtain safe access to healthcare, public spaces and buildings, safe housing.
  • Further clinical research and investigation on the causes and biological mechanisms behind EI/MCS.
  • Longitudinal studies with long term patients of the condition AND of course dedicated treatment studies.

 

Want to add some to my list? Please leave me a comment below – I’d love to hear from you!

ameila sign off


 

RESOURCES

http://www.ei-resource.org/

http://annmccampbell.com/multiple-chemical-sensitivity/

http://www.nicnas.gov.au/__data/assets/pdf_file/0005/4946/MCS_Final_Report_Nov_2010_PDF.pdf

http://discovermagazine.com/2013/nov/13-allergic-life

To read my personal story see HERE
For EI/MCS support & Chemical free living resources see HERE

16 Responses to All about EI/MCS

  1. Hi Amelia, I’m not as bad as you, as I can still go outside and live a some what normal life, I have had two bad Anaphlactic shocks were I have died, thankfully I was able to be brought back to life, I dont look forward to the days I know that going outside is not good for me or not being able to pat a dog, I spent thirty years training dogs now I can’t go anywhere near one, and I’m allergic to one of my granddaughters. regards Gary

    • Gary, I’m so sorry to hear about your struggles. MCS etc can impact every area of one’s life … many times the things we love the most. Boy, do I understand that.

      I do believe that the body can find a way back to health. Even when things seem hopeless…I still think it’s possible. Somewhere inside, the body must remember how to be well.

      Sending you my best wishes & healing vibes.

      Ax

  2. Great story and for those who suffer this terrible “illness” it is great to know that it is a real and acknowledged problem – not just in people’s heads or made up. My partner has suffered this for his adult life and has spent $$$ (lost his job/marriage/children/home) in trying to find a cure or at least minimise his symptoms…thank you for your courage in sharing this with the world and other suffers….

    • Hi Leanne, yes I understand how devastating this illness can be. I’m so grateful your partner has your support. Blessings to you both!
      A x

  3. This is one of the most informative articles on MCS. I have been living with this problem for years and am determined not to become a prisoner in my home, but everytime I go out I encounter fragrances and chemicals that make me ill.
    Thank you for this post. I will share and continue to advocate for clean indoor air and less chemicals in our lives.
    Recently while in Nova Scotia, I was delighted to find hotels and motels that don’t use air fresheners or scented products in their rooms, lobbies and bathrooms. Why can’t we do this in the U.S.? I think manufacturers have brain washed our society to believe artificial scents equal clean. Instead, it means polluted air that we breath.

    • Hi Glenda, thank you so much for your kind feedback. And THANK YOU for sharing too!

      That’s wonderful that you found a fragrance free motel in Nova Scotia- seems like a rare thing these days!

      All the best 🙂

      AX

  4. I have had EI/ MCS for 35 yrs. I developed this from working in a federal government bldg in Place du Portage III, Hull PQ.The bldg contained formaldehyde. It was in all pillar posts which were scattered thru’out the bldg ( They were the support which held the bldg up! Lucky me…….I sat right in front of one of those LARGE pillar- posts. I didn’t understand that everytime I sat at my desk in front of this large post I felt terribly ill. I saw every type of Dr which related to all my ailments. These Drs found nothing wrong with me, sound familiar? I have learned that I have limitations & I have read & read many articles , books, etc. I have had a few good Drs who helped me to some degree. it is all very expensive. I am on a pension & am now living in a co-op which is about 4 yrs old now, I moved here 1 yr ago so it had time to off gas. I have reduced rent due to so many expenses w/ org food, vitamins ,reverse osmosis water, & I use homeopatic remedies as I can’t take prescribed drugs.I am determined to get well, I contacted a homeopath Dr in USA (New York State) but I don’t have the money to take this cure. I keep buying lottery tickets & one day I’ll win enough money to get myself well. I feel it is going to happen!! I have many good days & I am in a much better position than some people. I thank God for that. I’ll never give up, I’ll fight the good fight. I know exactly how you all feel as I have been in this for the long haul! Don’t ever give up! God Bless!
    ……May You all get healthier with each passing day!
    Sincerely, Elaine Langdon

  5. I have suffered from MCS for nearly 40 years. My family was over exposed to formaldyhide after a faulty batch of roof insulation was installed.
    The sad thing is that some of my family and friends think it’s in my head and have no consideration for my problem.
    How hard can it be, to not wear perfume when they occassionally meet up with me?
    Clubs are now bombarding their foyers with toxic fragrances.
    Fortunately, cigarette smoke is becoming less of a problem .
    If only everyone would read your website and understand how real the problem is!
    Carol

    • Hi Carol,

      I feel for you. It’s not nice when others dismiss or invalidate a very real and disabling condition.

      I understand how heartbreaking it can be when others choose fragrance over friendship too.

      Fortunately, there is slowly more medical research & statistics to back things up and as more & more people share their chemical sensitivity stories, a greater awareness in the community will strengthen too.

      Please feel welcome to go to my MCS resources page for more links & info. You might want to send some of those links to those ill-informed people you mentioned who need to learn more about these illnesses.

      Thanks again for stopping by to leave a message.

      A x

  6. Hi Amelia,
    Thanks for your comprehensive website. I’m sorry that you’ve been so unwell for so long. At my worst, a year ago, I was as bad as you are. Literally lying on a camping mat for months, unable to tolerate anything. Feeling like I was dying. I’ve improved a lot, and for me it was about total mould avoidance, a vegan macrobiotic diet combined with Gerson therapy and supplementation. I’m still far from being able to work and spend most of my time in bed, but I’ve recently been able to socialize a bit with specific people in specific environments. I’ve even been able to tolerate for a short time mild perfume and newish paint. So I’m beginning to feel like i might get some sort of a life back. I see a bit of light after a very dark time lasting 3 years.
    Best wishes to you. I have great respect for your character, that you have endured the intense suffering for so long.

  7. My wife is hypersensitive to many things since being exposed to a mold problem in a home we owned in the early 2000s. It is technically not MCS, but is has many simulates. she is highly allergic to mildew molds of all kinds at very low levels (can have anaphylaxis) and sensitive to many things that she is not allergic to that irritate her (fumes, diesel, pair and cloth fibers, dust of any type, some VOCs. She is constantly battling exposures both in the home (accidental introduction) and everywhere she goes. One of the tings that affects her most is anything where water is sitting for a period of time, aquaria, vase of flowers, stagnant pond, even a glass of water left laying about for more than 4-5 hours. The flower thing is especially difficult as almost every store in our area has taken to putting vases of flowers out around the store in spring. At this point, we have no grocery we can go into. Even if I go and clean what I can, it introduces enough into the home to affect her and we spend days cleaning everything. Can’t even go near a restaurant with flowers on the table, or a place with a water fountain that is not chlorinated. Does anyone else have this issue with flower vases?

    This has gotten so bad despite building a house especially for her and implementing behaviors in the home to reduce issues, she still has trouble. Our daughter struggles to be compliant, but slips and causes an environmental issue and my wife is angry and hopeless about her living situation. This is disrupting all of our relationships, and we have talked about splitting so she could be alone, but where would she go? Love her and want to help her, but we have no idea what to do, doctors are only helpful with allergy and no one really understands the level of sensitivity, so fairly is not supportive and my wife increasingly (whenever someone causes an issue) distances herself from my daughter and I.

  8. Hi Amelia,
    Thanks for your website. I have 3 in the family with MCS, had it for over 20yrs now. Tried many things over the years to no avail. Never really understanding how we got so sick, except , we moved to Mackay and things started going down hill from there. BUT, then moved to Hervey Bay, and we went down like a dinner.
    After watching an ABC program on TV a couple of yrs ago and listening to a Prof. Borody, the penny dropped. He is at the Center for Digestive Dieases in Sydney and is about your good bacteria in your gut and colon and how CHEMICALS we breathe in and take (antibiotics) kill off our good bacteria, and cause leaky gut, and bad bacteria take over. This is exactly what happened to us!!! I was heavily pregnant at the time and had a 2 and a half yr old daughter, and she caught the bug Gardia within a month of moving to Mackay and the Doctor in his wisdom, gave us both the drug Flaggyl. And what they don’t tell you is that this drug not only kills off the bad bugs, BUT, all your good bugs (which is your immune system) Now my daughter was a really healthy child, before this happened, didn’t even have colic as a baby, all my friends at the time , were jealous I had such a health baby. BUT, within months of being given FLAGGYL, she started developing all sorts of problems. My son was born a very sickly colicy baby AND then we moved to Hervey Bay 6yrs later, and we instantly started reacting to the air there. Incredibly tired etc, stomach pain, headaches, bowel problems etc. We moved from there 8yrs later, to get away from the constant smoke in the air that our immune system couldn’t handle. I learn’t after moving, from a guy who worked in the National Parks ,that run around Hervey Bay, Rainbow Beach and up to Bundagerg, that they spray a chemical on all the undergrowth of the National Park to kill it, then they burn the park in sections all year around, and that was in the smoke that we constantly smelt the whole time we lived there. And you know the chemical they used, was banned in other countries over 40yrs ago , it was a chemical they used in the Vietnam War years ago (agent orange) The then Prime Minister Goth Whitlam in his wisdom, bought all the left over chemicals from the war, and they have been using them in ALL the National Parks in Australia ever since. And we are such a SMART country.
    We are doing the treatment of Prof. Borody, in the hope it helps , put back the good bacteria that we had killed off. He really has been the first person to understand what is wrong this us. AND , I bet with you, the termite treatment killed off your good bacteria too!!! This has nearly sent me insane, but , I now know what happened to us , and I think so many others out there, this is caused by our bacteria being killed off, by either chemicals we have been around or antibiotics we have been given. Taking Probiotics doesn’t work, we have been doing that for at least 10yrs, we do a combination of the GAPS DIET and BODY ECOLOGY DIET and neither has helped our condition, just given me a direction of how to prepare food and what food we can tolerate.
    We have to stick together. I think they are finally getting to the root cause, on the HEALTH RISING forum, they are looking at the bacteria in CFS/MCS gut/colon.
    One other thing I wanted to tell you to, is about bentonite clay. I couldn’t bear the thought, of the pain you went though getting your tooth out. I have had to get most of my teeth out and my children have had alot of dental work done. Yes we have the anestic, but, then we use BENTONITE CLAY, we make mud packs up and put them on our jaw line for about an hour and it pulls out all the chemical, YES, really, I am now kidding. We have used the clay for years, baths etc, but doing the clay packs get to the immediate problem. My daughter and I can get alot of kidney pain, and it works a treat, putting it on our backs in big clay packs. Please try it, it will save you alot of suffering.
    Sorry for the long letter, Keep well
    Donna S
    Anyway, I have raved on enough

  9. It would be great if MCS sufferers joined together in Australia.

    We could maybe campaign to get more recognition of it by GPs and by construction industry.

    Also if more people knew about literally how many MCS people exist in Australia, a smart builder might see a potential market to build MCS-friendly housing.

    Cheers
    Chris

  10. Hey Amelia, my name is Caroline from South East London and I am 39. I contacted you a couple of times last yr I think in regards to severe chemical sensitivity to all clothes. Repeated washing in different things including bicarbonate or milk powder,vinegar, lime juice etc didn’t help. On the up side in Jan this year I found a wonderful homeopath who within a month or 2 helped me with my clothes allergies not completely but enough to be able to find clothes to wear-maybe about an average of say 50% improvement which was so amazing and felt surreal at first like it was too gd to be true!

    I would love to go into detail to tell u my weird symptoms and even how I accidently contaminated my washing machine with a wash bag which caused all my clothes to severely burn my skin which starts of in my pelvis area on right side like most clothes intolerance reactions do-I think the pain starts off in that area because it has something mainly to do with my sluggish imbalanced liver. Even after repeatedly washing out the machine loads of times with all sorts of natural stuff didn’t help. I used to use these washbags all the time and bought some new ones and noticed the reaction after using the new ones but first had thought it was the dr beckham machine descaler that I used.

    I only accidently worked out that it was the wash bag when I accidently did the same thing and contaminated my sister’s washing machine when I got the same reaction after using another new washbag when washing a top!-So annoying and emotionally upsetting aswell as severely depressing to say the least . Even when I had clothes just rest near where the wash bag was on the radiatior they irritated and burn my skin and washing them loads of times didn’t help either.

    A lot of things burn my skin and cause inflammation starting in my pelvic area so I know the problem with my immune system that causes my million and one allergic reations is affecting my core/pelvic area as I have a lot of imbalances going on there including severe and painful endometriosis which also causes other types of chronic burning sensations all over.

    I alsdo suffer from electrical sensitivity which has been really bad for a while but worsened since last yr nov to the point where I had to flee my home and now Im at the point where I will soon have nowhere safe to stay.

    I get a severe burning acid type painful sensation in top of my head every day when around any lights-I am curious to know what your symptoms were/are to lights when u said u had to be in the dark yrs ago.. I get painful tinnutis and pressure in ears like they are going to explode. I get nausea,vertigo,sizziness, pain in throat,excrutiating migraines and now a nerve twitching in front of my head when around wifi,computers,tv,lights.on or near phones. When I go in certain rooms and my body/head picks up on the radiation from these devices I feel so sick, and the pain is unbearable. I feel weak and disoreinetated and feel like I have a clamp squeezing the life out of my head. If I go in shops near tills or big screen tv cctv cameras the pain in my head and ears triggers-so intense to say the least. When sleeping at my sisters who didn’t want to turn wifi odd anymore because she said it messed it up after a while-I would wake up to bladder weakness and painful/irritated bladder and urgency to urinate,throat pains, painful ear pressur like it wants to explode with trembling. The flipping wifi router was right under my room along with a cordless dect house phone and what made it worse was that I slept on a metal spring matress-which of course acts like an antenna for radation to be at attracted towards you more! So sleeping like that for a couple of months didn’t help my body and the fact that I work in an office and near wifi routers and lights doesn’t help me either.

    I can’t afford to not work and I know I need to change jobs but its hard to find something suitable with so many allergies and health problems and pain-who would want to hire me? When I use computers or am near lights, I get severe painful burning in scalp and it burns in top front of head mainly and I get itching in ears and on scalp due to irritated skin and nerves in ears and in head and on scalp which is always now painfully sore,tender and inflamed to touch like neuralgia.

    Constant unbearable pains is exhausting me.I am now at a point where I have literally lost the will to live. When I read what you have gone through I know that although I have a strong tolerance and threshold to pain and can persevere I wouldn’t be able to hang on in there quite like you. I don’t know where I am going to live/sleep now after the next couple of weeks as at the moment I am staying somewhere which is temporary-its so scary and daunting not knowing what the future holds and feeling like I am homeless as I am allergic to radiation which is everywhere. My skin is another story too overly sensitive and burns to almost everything. I think I am stuck in flight or fight mode and that my brain is also causing me to overeact to certain things unecessarily for whatever reasons. I cldnt eve finish wastching annie hoppers dynamic limbic system brain retraining as dvd gave me bad headache. Now when I use my vak hoover I get nerve twitching in my head like a shock and even holding a mob hurts my hands,ears and head for yrs now-its ridiculous these symptoms.Most people would think I am crazy but Im not.

    I never had these bizarre symptoms when I was younger although I have been sick since in my twenties or so and get more and more ill as I get older. I would love to hear some words of advice and encouragement and helpful tips to keep me sane and stop me from thinking that there’s no point to my existence anymore as I can’t cope any longer as much as I am trying to hold on. Please kindly rsvp asap.

    P.S It was so heart warming to see how many people are so loving and caring towards you with their donations-that’s so beautiful to see! If I wasn’t so poor I would donate tons of money to you just for being you!-You truly are amazing!

    I really admire your courage and strength and your testimonial story which shows that despite how bad and ridiculous things get that God is helping you to overcome … I hope u are doing better than then when you were feeling really bad earlier on in the yr!

    I would love to speak to u on the fone if possible…I wish god would send me a miracle to have somewhere to sleep and survive.

    Cant really afford to resort to sleeping outside and pushing through all these different mad pains and difficult symptoms each day just to pay the bills isn’t bearable anymore-this is so much more than pain…feels like I am in a nightmare that I can’t wake up from-how did we ever get like this??

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DISCLAIMER - Information contained in this website is based on my own health journey. Please use your discretion and consult with your doctor or healthcare provider to decide what is best for you.