My Story

If you have MCS, you don’t need to be told how distressing this illness is! Luckily, everyday there is more awareness and help. The physical aspects are frightening and debilitating and the social consequences are sad, infuriating and humiliating. So many people just assume you are a complainer or a hypochondriac, when you are just trying to stay alive. I learned to suffer in silence(and further damaged my body) because people would be offended if I suggested something they used was toxic. After a while, I realized that I would just have to piss people off and let them think or say what they want. When you are having a chemical reaction, you can hardly think straight and your fight or flight mechanism is in full flight mode. Now that I am not so sick and desperate, I can calmly say how sick I used to be and how that still bothers me and people are nice. The social, relational component is intense! My view of the human race had to be readjusted based on how absolutely uncaring people were when I needed some small concessions.

I just want to give you a little background: I was always a healthy conscious, actively exercising and well-eating, so I was sensitive to chemicals, and maybe a few years ago, perfumes started bothering me. All of a sudden, in my gym and my workout class, people’s perfumes and fabric softener started bothering me, making me feel so sick, so  that I couldn’t stand to stay in the room anymore. I was left with a headache, disorientation and gasping for breath. Over a short period of time, wherever I went, the chemicals everywhere just bothered me—gave me headaches, made me grouchy, made me spacey, make me tired, hurt my lungs, and just made me feel awful.

It started off with not being able to do group cardio out at gym. It quickly became so bad that I could smell someones deodorant 5 feet away. I  took me months to realize that I just needed to stay home. I kept going to the gym, I kept going out and every time, there was a problem. If I went to a restaurant, I would be sickened by someone at the next tables fabric softener, or the bathroom air freshener. I was also sensitive to EMFs~the electricity from the wireless phone or the cell phone.

Looking at the above photo reminds me that when I was teaching pottery, I would feel sick from an empty bag which had once had laundry detergent in it. The bag would be 5 feet away. I would get sick from a friends coat that she had once worn with perfume on. Even the people who tried to accommodate me, there would always be something. If I went to the park and the chlorine from the fountain would hurt my lungs. If I was on the sidewalk, I could smell people’s perfume through the closed windows. Those little pine tree air fresheners made it impossible to ride in a taxi. I had an asthma attack working out on a polluted day and that was the beginning of my lungs being damaged. Once I was sickened by some  ‘aroma therapy’ (“organic” from China ) so that I could hardly even manage to put a sentence together. One time at the airport, I could hardly lift my carry-on. (I am generally very strong~those are my Online Zumba classes on the right ). When I was sick I had aches and pains and twitches which have since disappeared.

Its the neurotoxic chemicals that made me sick. So beside feeling physically ill and not being able to think straight, I was very irritable and this always made it almost impossible to express what I needed. Being in traffic was unbearable. I am sure at least 50% of road rage is the neurotoxic exhaust that invades the car in stopped traffic. Most cars made me very ill.

I immediately started googling to find out what was wrong with me.  I found out how serious MCS was and how it gets worse fast and unpredictably.  I  started detoxing and doing everything I could do, I read Sherry Roger’s books a few times through. I read all this stuff on Curezone.com which was sort of the only place, at the time, I could find people with Multiple Chemical Sensitivity (MCS). I started doing most of Sherry Rogers’ protocol which is the alpha-lipoic acid, glutathion, vitamin C, ssuna therapy, and coffee enemas on a daily basis. I did a hundred other things. I read incessantly, and did everything I could to get better. I also upped my nutrition and cleared my house of all the toxins I could. I got air purifiers. I had a friend who said he had an immune system disorder and got well by going to therapy, so I started going to therapy. I just did everything I could. I’ve had acupuncture. I took all kinds of supplements, ate all kinds of super foods. My lungs were damaged by MCS and I started implementing therapies, herb and food that are good for asthma and lung issues.

I have learned about stress and the mind/body connection. De-stressing is essential and I spend time doing restorative yoga, doing enjoyable things; not getting stressed over daily and reducing time spent with negative people.

I live in a city. One day, I suddenly couldn’t stand the smell of people’s perfumes and fabric softener; I could smell all kinds of toxins that others didn’t even notice. Air fresheners, Perfume, Car fumes, cigarette smoke, Sterno heaters at buffets, air fresheners, air cleaners, floor cleaners, scented and unscented candles and incense would give me a headache, irritability, inability to think, lung irritation (later some asthma) and this overall feeling of not being well. I felt just awful. I  first noticed it in the gym studio where I used to take dance workout classes. The most fun hours of my week turned into a tight-chested, headache, brain fog nightmare. I ended up getting banned from that gym when that one dance teacher accused me of being racist when I couldn’t dance next to one perfumed woman. She knew I was chemically sensitive.

The good news is, after about nine months or so of detoxing, I all of a sudden got well. The bad news is, all of the time I was detoxing, I was still getting worse. I wasn’t feeling any better at all, and if you have MCS, you know, it’s really frightening, and it’s really frustrating. I always had faith I would get well. I never believed all of the people who said it was permanent brain damage etc. I had to get well. That could not be the end of my active life. But after many months of detoxing and only becoming more sensitive, I sometimes lost hope.  I did not want to go live out in the desert all alone, like so many do. It is the most awful illness I can imagine because not only are you sick, you can’t go anywhere, and it’s a really serious, fatal disease, but everyone just thinks you’re neurotic and complaining, that it’s all in your mind, and doctor’s aren’t much better. MCS has a high rate of suicide and most people I have talked to found living unbearable at points. There are a lot of people with worse and very long term MCS and i really can’t imagine life even worse than what I had.

I started my sites and my channel to help other people and to encourage people to detox and build up your nutrition, health, alkalize and strengthen your health as quickly and as best as you can because you do not want to keep getting sicker because you can get well.
When I was sick, I would read for hours on all these message boards, and there were a lot of people sick, and there wasn’t a lot of people that got well. A lot of time when you get well, you just go live your life, but I want to come back and encourage everybody else to get well.

Also, I’m still detoxing and am still somewhat sensitive to chemicals. I don’t want to just get well enough so that I’m not “sick”. Now, I am just about as sensitive as millions of people who get headaches or asthma from air freshener or cigarette smoke. I have realize that tons of people are chemically sensitive and just don’t know it. The detergent isle bothered my 10 years before MCS. Now it hardly bothers me; although “Snuggle” still makes me sick! I don’t know whats in that, but its not good! My lungs are much better now.

I read everything I could in an effort to get well. My doctor just looked at me with a blank stare like I was crazy. She Ignored me. She later dropped me as a patient. I went to 10 other doctors, none of whom knew anything about MCS nor were willing to learn. I read so much trying to get well and  I had read about how very seriously sick people got that I did everything I could afford to get well. This is not an illness you want to address later. It can get suddenly much worse, many people are totally disabled, many people die. I spent most of my time all of that Winter in the sauna, doing colon cleansing, taking supplements and reading about MCS. All that time I was just getting worse.

Summer came I felt like a normal person again, only strong chemicals like incense or air freshener bothered me, but I could go most places without smelling everything.

That Autumn, when they turned on the heat in my building,  I started getting sick again. I did find some old materials in my radiators,  I felt much better when they were removed. To heal MCS you have to be a detective, trying to figure out why is making you sick and how you are damaged. The next Winter, I realized that it still bothered me and I turned off my bedroom radiator (my landlord had said that I couldn’t because it might cause problems in the whole building. I have since adopted the “it either them or me, and I chose me” philosophy).

I just want to share everything I found to help and give helpful links that may help. When I got sick I had no help from Doctors I saw and the few MCS websites were geared to studies and awareness. I just had Sherry Rogers’ books and the internet.  I tried all kinds of what I though were crazy remedies and then learned that they worked. I don’t have a lot of money to spend on doctors or going to detox centers (which I would do if I had the $). I studied MCS and Health for two hours or more a day when I was sick. I realized that while I felt fine when I was home or in nature, and I certainly didn’t look ill, that I was in fact very seriously.

I decided to put everything else in second place and dedicate all of my time and resources to getting well. I spent hours every day doing coffee enemas, saunas and reading.I decided to treat myself like I was in one of those environmental illness treatment centers. It was a good move. I feel great and am determined to be 100% able to go anywhere and feel good!

 

 

 

 

9 Responses to My Story

  1. sherryclark89 says:

    Hello, I have suffered from MCS for the past two years. I have just started my journey on healing and so glad I found your site. I have been searching the internet with little success on this. A friend of mine that doesn’t suffer from MCS said she used Dr. Schulze’s products. I have been reading on his website but I haven’t ordered anything yet and I couldn’t find anything on MCS, so I emailed him on what I should use, I’m sure he will say his 5 day bowel detox. I was wondering if you had heard of him or tried his products. My friend has not been sick in over 20 years! Thanks. Sherry Clark

    • Eve says:

      Yes,
      I am just getting this website going, hopefully more people will find it! I don’t know much about Dr Schultz, but I wouldn’t buy his products, they are not a reputable brand and you can probably get everything cheaper and better quality somewhere else. If I was you, I would start doing the coffee enema asap. Any organic coffee is good. I made two videos on it. That’s me. If you have MCS there is a WHOLE LoT you can do, and I try to put all of that info on my site. Every MCS is different and if its a very severe MCS you have to be more careful! I hope that helps. MCS is so awful! I have only a very mild case now and always getting better!

  2. Dear Eve,
    I am so glad to find you in cyberspace. Thank you for creating this site and FB to spread info about healing from MCS. I am writing a memoir about my healing experience. It’s along the line of yours, that you take charge and started to “clean yourself out” -detox. I had to do BOTH physical and emotional/mental detox. There were traumas in my life which needed to heal. I didn’t know it until I got this weird MCS. As a person, I never slept well and my body never rested fully since, like, birth. My “being on the run” mentality drove many processes in my life. Many had help me to achieve a great deal.

    You are so right that people think we are hypochondriacs. Pre -, during, and now post-MCS. Once you heal and know the issues, why would you go back to artificial and formaldehyde anything? I can go wherever I want. I still smell things (I’m not dead). But I eat and live clean.

    I want to connect with like-minded people. People who have suffered MCS and come to the other side, and help others. I just emerged to internet/public fully a month ago. Please check out my website and FB. I hope we will share information and energy to improve the world. Good wishes to you.

    Sincerely, Sue

  3. Christine000 says:

    Hello All,

    It’s 4:00 AM and I found this website in desperation. I have a terrible situation going on right now. I stopped being able to go into my apt, I suspect the vinyl flooring. I lived on my new apt almost 3 months and during that time my health went down. I got all sorts of allergies I never had.before, I can now only eat cooked vegetables and easy to dissolve proteins like eggs and chicken. Worst of all I’m getting random muscle spasms in my legs, stomach and esophagus, the ones in my esophagus made me believe I had a heart condition! I get anxiety when that happens to me. I don’t have reactions to perfume, fabric softeners, etc however I got “nerve shocks” and calf spasms from my legs brushing against a couch! Please, please tell me that I can do something to stop this. I spent all my money on doctors and now I’m broke. I can’t go back into my apt and I’m staying out in the country. In danger if losing my apt and heirlooms, etc because I can’t work!!!!! Will you please help??? I need some support, I’m clueless on how to get rid of this and no doctor has helped! This just started last month!

  4. Christine000 says:

    Hi All,

    This is Christine, I just wanted to leave some follow-up for you guys after my desperate message a few weeks ago.

    I had become ill in a new apt- first with a panick attack, next with massive allergies I never had before to clothing, plants, a mattress and all sorts of other things. Finally I had reactions to foods but didn’t realize it because I had never had food sensitivities or allergies before. I had spasms in my esophagus and Gerd-like symptoms and finally couldn’t get any food down whatsoever, my esophagus had closed completely.

    I panicked and fled my apt. ER doctors did little of nothing – they either assumed I needed psychiatric care, assumed I had GERD, and only one Dr. Thought I might be having some sort of allergic reaction and gave me Benadryl.

    I felt better after leaving my apartment and went to an allergist- she said I had zero allergies after a “scratch test” and told me to eat lots of vegetables and fruits and use an air purifier if I went back to my apt. That was falsely reassuring, after such severe symptoms she never should have told me to go back in.

    I went back into my apt believing that it could have been “because I was stressed”, etc . 9 days later I had another “attack” where I could not eat, had nerve spasms, etc. and had to flee again- that’s when I wrote the above message.

    This time I never returned to my apt. I finally got a toxicologist on the phone, it had been very difficult to locate one who would talk to me. He said that my symptoms came from Pyrethroid Bug Killer. Sleeplessness, food and other allergies never experienced before, nerve spasms and twitching- that is over use of Bug Spray, and it happens every year in NYC because people use unlicensed contractors to apply pesticides in. Poor neighborhoods. This happened to me- the landlords use their son for all contracting work instead of a licensed pro.

    I called every govt. agency like EPA, Poison Comtrol Center, 311, and ALL that stuff. Not one single person could or would reccomend any doctor who would help me.

    After my initial symptoms went down I am healing. I have some food sensitivities that are getting better each day, and I feel sensitivities to some fabrics that are made with a lot of plastic, but that also gets better each day. Yesterday I sat on a vinyl chair and didn’t even think about it.

    I also had either asthma or reactive airway disease in response to being in a friend’s house who had 6 cats and it was also heavy pollen season at the same time. This was the first time I had it and it really scared me. But I changed locations and I didn’t have it again. I am moving farther away from the city to a place with good fresh air and beginning lung health practices to counteract this. His house was the first and only time I had this and I will do everything in my power to make sure it never happens again.

    How I healed was that I ate only fresh and organic(if I could get it) vegetables and fruits, lots of leafy greens like kale, collard greens and spinach, beets both roots and greens, and easy to digest chicke, turkey, lamb and eggs. I also took lots of high grade supplements and tried as closely as I could to follow the vitamin/mineral Protocal on Dr. Grace Ziem’s website. I also read about Dr. Pall’s Protocal.

    I have noticed a sensitivity/allergy to Alpha Lipoic Acid so I don’t take that unfortunately. I also am very sensitive to caffeine, so is my mom, it’s hereditary, so coffe enemas are out unfortunately. But I have located a Sauna which I use regularly. The best is a low temperature where you can sit in it a long time as opposed to a high temp. Where you might lose electrolytes.

    Aaalll the supplements are expensive but they mentioned that the most important are the Bs especially B12 and Buffered Vitamin C. So I started with them and added a couple every week as I could afford it.

    I have not even attempted to eat any junk food, cakes, pies, etc. I don’t know what would happen if I did but I’m going to hold off on it till I’m completely 100% better.

    I had joint problems during the time I was exposed to the Bug Spray and I’m looking for ways to heal my joints. My back went out and my ankles got really stiff. They have gotten better but not 100% so I’m looking for ways to help that problem.

    I know how serious this could get, I have read all the horror stories of people living in the desert, outside and so forth. I am doing my utmost to heal and so far it’s working. I never got to the point where I couldn’t stand scents, etc I had my hand twitch when I tried to touch mold killer, that was enough for me, there’s no reason to come in contact with that stuff ever IMO, from now on its all Health Food Store products like Dr. Bronners, etc and I will be the happier for it. I never used harsh deodorants, sprays or any of that stuff anyway, I was raised going to Health Food Stores and taking vitamins.

    I read of the Pyrethroids that exposure to them can MIMIC MCS and may not in actuality BE MCS, but I’m not taking any chances. Just the fact that I had reactions to certain fabrics and foods even for a short period of time (a month afterward) shows me that there is a problem and I really needed to be healthier anyway.

    I’m so, so grateful to you for making this site, Eve, for a whole my world was looking very scary and the fact that you got better and are showing others how to get better is so great. People can get lost in hopelessness with MCS and the success stories and simple, inexpensive how-to guides are what is really needed, you have provided that. Thank you so much, from the bottom of my heart.

    Christine

  5. Rajmahal08 says:

    I’ve been in severe pain for some time and need help. I’m only 28 and seeking help. Should I invest in a sauna? I’ve done so many things to try and help my mcs/emf issues to only come up short and disappointed over and over again.

  6. mom7 says:

    Eve,
    I am so glad I found this site! I am a 43-year-old mother of 7 who has just gotten full-blown (anaphylactic) MCS from taking 4 puffs of Sybicort. In the past month I have left my job as vocal and piano instructor at the local university, dropped out of 5 singing groups, left my post as cellist in the symphony, and resigned from two committees. I am now living in my bedroom with an air purifier, taking coffee enemas and eating next to nothing. I can’t even hang out with my kids unless they take a baking soda shower and get into “approved” clothes. I can’t imagine people who suffer with this for years. I also have a kidney condition (MSK) which has caused me to pass hundreds of kidney stones over the years. I can tell you now, I would rather pass kidney stones than have this debilitating condition!!

    Anyway, it’s so wonderful to see you healed up after having gone through the MCS–and not having to move out to the desert or something. I have a far infrared sauna (bought to help with the kidney stones), but so far the cedar smell is a little much for me. Hopefully, before long the coffee enemas will have helped enough that I can tolerate the sauna.

    This Wednesday, I have an “appointment” with renowned homeopath Joette Calabrese. I talked to her yesterday and she had full-blown MCS and cured it with homeopathy. I know homeopathics are the only thing that have given me relief with kidney stones, so I am definitely hoping this will be an answer!! Thought I would let you know if it helps at all–maybe it could help some of us who are suffering.

    Blessings to you, Eve, for “coming back” to help those of us who are still struggling!

  7. mom7 says:

    One shallow thought to add–it’s great to see you with make-up–and where do you get stuff you can tolerate? I have worn make-up for 30 years and suddenly, now, I can’t! Seeing my washed-out face every time I look in the mirror is getting flat-out depressing! Plus dealing with my hair without my “old” products is a lesson in futility! Any suggestions so at least I can look hot while I’m hanging out in the bedroom? ;)

  8. mom7 says:

    I’m especially in need of mascara–which I didn’t see in your make-up collection. My lashes are transparent!

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