Surviving Multiple Chemical Sensitivity! Surviving Multiple Chemical Sensitivity!

MCS Questions and Recovery Stories

Discussion started by Maff 9 years ago

HI all,

Welcome to our new members, I know a few of you have joined in the past week or two!

I wanted to get a new discussion going where you can all reply with any questions you might have about MCS and its management and treatment. I suffered severe chemical sensitivities for a period of 5 years and had to wear a carbon filter face mask everywhere I went including my own bathroom and kitchen...despite removing all chemical nasties. I am fortunate in that I made a complete recovery and have now not reacted to anything for 10 years. I'm happy to discuss my experiences while suffering with MCS and how my recovery came about.

Hope to get to know you all and hopefully help you out a bit soon! 

 

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Robyn_WC88
Robyn_WC88
Thanks for the encouragement, Maff! I do have an "I Can Breathe" mask that I use in crowded situations. I had the "Protection Plus Nasal Filters" for a year while I was still trudging around the office. Do you think if we wear a mask around public places as much as possible, it might help recovery time?
Did you have to get toxicity testing routinely while you recovered?
For myself, the worst part is feeling intoxicated, anxious, irritable and untreatable headaches.
In the interest of focusing and moving forward, I'm going to look for some counselling, and medical treatment for my digestion issues. I can't help but wonder which came first, but possibly: Food allergy->Candidiasis->New job and MCS. Candidiasis recurs every few months so is the most draining on my energies.
I'll check out the links and other posts shared, it's all very encouraging!
Cheers,
Robyn_WC88
8 years ago
Maff
Maff
Hi Robyn, thank you for sharing your story with us. As EiR Founder I certainly hope you find both empathy and useful information here! The former goes without saying (we're all in this together), the quality and usefulness of the information I will let you be the judge of...
Making your home safe is a key first step to managing symptoms and ultimately, with a bit of luck, recovery from MCS. It's great to read you've managed to achieve this. I was the same as you with guest visits and venturing outdoors causing days of illness - quite flu-like in my case. Have you tried wearing a carbon filter face mask in these situations? The 'I Can Breathe!' masks worked wonders for me and allowed me much more freedom, albeit looking like a surgeon - they have a whole range of "fashionable" designs now!
Having recovered fully myself I can't stress how important it is that you do all you can to avoid anything that makes you anxious. Your body needs as much rest and relaxation as possible to help it restore its equilibrium. Don't get me wrong, I share your concerns entirely about the chemicals in society, particularly when companies target children with marketing their toxic products. For now however, I would urge you to focus your energies on your own health and recovery. Progress is being made with raising awareness of the dangers of synthetic chemicals (particularly fragrances). Jodie linked to a great article in our forums just this week; published in the mainstream press it had doctors/researchers calling for banning of all fragrances in hospitals. It will come and society as a whole will wake up...eventually.
Best wishes, Maff
8 years ago
Robyn_WC88
Robyn_WC88
Hello. I'm Robyn, and have only been chemically sensitive for the last 3 years, as a result of working at a big office building. This past year I've worked from home. I'm fairly isolated, but functional and hope to find empathy on this site by reading other experiences.
My home is safe, but having guests over results in days of illness. The improvement is that I can go into public for an hour or two with minimal lingering symptoms by avoiding crowds. I'm sure we will have a continual struggle ahead, and I therefore feel very overwhelmed and anxious that society doesn't pay attention, and companies sell chemicals for kids to wear and play around.
8 years ago
CazNZ
CazNZ
I so agree with you BL. I'm one of the ones that has improved gradually. For eight years I continually got worse and from the start of doing the brain retraining I gradually got better. This TED talk, not by either of the programmes, explains the science behind the programmes: www.youtube.com/…
9 years ago
Jodie
Jodie
Certainly works for some. I got hold of a copy & did a write up on it here www.ei-resource.org/support/forums/multiple-chemical-sensitivity-mcs/3287-a-write-up-on-gupta-retraining/ in case anyone's interested.
9 years ago
BL
BL
Should any new members be willing to try reducing the hypersensitivity of the limbic system by means of brain retraining then it is well worth finding out everything you can about Annie Hopper's Dynamic Neural Retraining System and Ashok Gupta's programme for CFS, Fibromyalgia and MCS. Maybe look at all the video testimonials on the sites and also You Tube and see if any of the stories resonate with you. Avoiding triggers is indeed important initially but I am not sure how much this is to give your body a chance to rest from the overload of chemicals in modern life and how much it is because reducing symptoms allows your limbic system to begin to "relax".
I developed mild chemical sensitivity after woodworm treatment to the home but tipping points occurred ten years later and I developed full blown MCS in 2004-5. I feel I wasted time, energy and money exploring the detox route only to come to the conclusion that, sometimes at least, a largely placebo response may be the unifying factor in people who reported recovery by all sorts of different approaches, and then I started looking into brain retraining and it is truly wonderful to have one's everyday life back, as I am ( at least ) 85% recovered. Just be aware that the recovery testimonials on video are often by people who have recovered quickly but many people using these methods recover much more slowly as I have done over a couple of years-but each gain along the way was great to have.
One piece of advice I should like to have had was " Don't pay attention to anyone, however eminent, who says that you will never recover unless you do X,Y or Z" I came across a lot of dogmatic opinion without much evidence to support it and it just encourages more fear .
9 years ago
Jodie
Jodie
Safer salons - brilliant! If it helps drum up support put lobbying links here and on the other groups I mentioned.

My 'safe /not safe list is on my comp, as well as a print-out, its now 20 pages of small type - one 'good' column, one 'bad' divided into food types ,then meds & so on..the 'good' column now way longer than the 'bad' . I often do a word search on it these days if I need to look up something, it's gotten so long! To think once upon a time we lived in houses with natural materials & ate meat, veg & a few herbs, wouldn't have needed a 20 page list 100's of years ago
9 years ago
dawndy
dawndy
Yes, the salon environment can be really toxic, as I have learned. I left the salon over a year ago to freelance styling hair for photo shoots to be away from the hair color, etc. Being too sick to work the last several months has been really frustrating. I actually spoke with a researcher earlier today who is looking to start a controlled study on environmental illness in hair salon workers. I have become an advocate for safer salons and have lobbied in D.C. and run a website with a colleague who is also sick from the salon products. It's scary how many people are starting to become so sick from these chemicals.

And it really is such an eye opener, as you said, with how many things are actually really toxic, such as mattresses and duvets. I am definitely learning to be careful.

Thank you for the links - those are great! And thank you for the advice; I am hoping that as much avoidance as possible will be a good start. And I love the idea of keeping notes on how I am feeling each day and what I was in contact with/consumed. I am going to start doing that. Thank you so much for the great insight!
9 years ago
Jodie
Jodie
ick ! I've often thought hairdressing is one of the most toxic working environments going, I'm really surprised there aren't more casualties coming out of that field. And isn't it an eye opener when you realise something as innocent as a bed is actually seriously toxic! I ordered a duvet last month from amazon and found it was treated with something called 'ultra-fresh' .. I'm now so aware of chems dressed up in enticing names that I googled it, turned out to be Triclosan, a toxic chem that nearly all the big companies have given up using! You learn to be careful, just look around you and you can see an ordinary room is loaded with manufactured stuff which can off -gas chems. And this is pretty recent - when I was a kid things had to last a long time as there was no cash to buy anything much new (plus it was often more natural materials than today) I buy a lot 2nd hand these days, works better for me.

Have you seen planetthrive.com and groups.yahoo.com/neo/groups/GreenCanary/… ? lots of support there too, each of these groups has its own strengths, I use them for different types of support.

I would aim for avoidance of triggers as a priority, as much as poss, at least to start with to calm your bod down. When I first started to try and find my way thru the maze of triggers I kept a careful note on 'good' days of *everything* I had eaten or been in contact with, from food + drink to showers & toothpaste. That was a 'safe' base from which to start adding other items one at a time and see what happened.

Hope all this helps!

9 years ago
dawndy
dawndy
Hi Jodie, yes, actually. I am a hair stylist and in 2011 I had started working at a hair salon where we were using a hair smoothing treatment on clients that unknown to me had formaldehyde in it. So nearly every day for six months I was breathing formaldehyde in vapor form. I was incredibly sick during that time but it took a long time for me to realize the connection. Once I did, I quit immediately but it took a long time before I felt relatively better. I never did feel quite well after that and soon after developed a lot of food allergies, intolerances and chemical sensitivities, plus I would get sick a lot more often.

However, my chemical sensitivities were not too bad, but in the last six months my fiance and I bought a new mattress that I severely reacted to, then we tried another one that I reacted very bad to, as well as some furniture. I removed all of that from my home but it really made an impact on me.

Finally, a few months ago in the middle of May I went to visit my father who had recently done a lot of work on his house. New carpet, new paint, new mattresses, new furniture, etc. and that was the tipping point for me. I became incredibly sick and now I have severe MCS. The time I spent there I had to sleep on the bathroom floor because I could not tolerate the beds or couches. So it's only in the past few months that I have been this severe and it is definitely a frustrating time for me. I am really glad to have found this website to be able to connect with others! Thank you so much for all of your insight; I appreciate it so much.
9 years ago
Jodie
Jodie
Was there anything that kicked it off for you Dawndy? With me I think it was a massive house extension, finished that Sept , then I was shut in all winter with new paint, flooring, carpeting , furniture , fittings of every sort, building materials, all offgassing. I was at home looking after the kids at the time. I was also using red hair colour which sent me into shock at one point so that didn't help :s I came back from seeing the country's foremost mast cell expert last week who said avoidance of triggers is often the best strategy, it was my best strategy apart from having the fillings removed. The more u can calm down your system the more it seems to settle and becomes a little less trigger happy bit by bit. Tho u do have to rule out other conditions (porphyria, allergies, etc ) too.
9 years ago
dawndy
dawndy
Thank you for mentioning this, Jodie. I've been too sick to work the last few months but I am still taking every thing very slowly and step by step. I, too, am being very cautious and at a pretty low point with not much tolerance for many things.
9 years ago
Jodie
Jodie
I should add that part of the reason my recovery seemed to be so slow was that I was working 'til 2 years ago (I'm retired now) - I had to be very careful not to make myself so ill every time I tested something that I couldn't do my job properly, so most testing was done at weekends. If hadn't been working I think it would have taken half the time, I was just being super cautious, and I was coming up from a very low point, very little tolerance for foods, environmental chems, meds, even exercise.
9 years ago
dawndy
dawndy
Hi Marcus, I am so sorry to hear you have been suffering for so long. I am glad to know that now you have found something that may be working!
9 years ago
marcus
marcus
Hi Dawndy - I have suffered with MCS for 15 years, without any real remission. However in the last two months I have tried 2 treatments which seem to be having a serious effect.
9 years ago
dawndy
dawndy
Thank you so much, Jodie and CazNZ for your insight. I appreciate all of the information!
9 years ago
CazNZ
CazNZ
I so agree with you Jodie - two steps forward and one step back. Recently, for me it has been four steps forward and one step back. I've been taking supplements also Dawndy. Living in the country, did a brain retraining programme for over a year and now do Joe Dispenza's 1-hour-a-day meditation. I've had half of my amalgams removed so far but I'm not convinced it is making any difference.
9 years ago
Jodie
Jodie
Hi Dawndy, I could not take supplements apart from a few drops of Biocare liquid vits (still can't) - anything else would have made me much sicker. Other than that I only felt worse when I crossed paths with something I couldn't tolerate & that was 2 steps forwards 1 step back - over nearly 10 years (since I had amalgam fillings removed and did a detox) - I had to keep testing my tolerance levels as my system slowly calmed down.
9 years ago
dawndy
dawndy
This is great; thanks for posting! Did those of you who are recovered from MCS find that during your recovery you at times felt even worse before getting better? I have started taking steps towards recovery (such as supplements, etc.) and so much of this is new to me. I feel like I have a long journey ahead of me but I am staying positive.
9 years ago
Sink
Sink
That geoengineering video is very scary. I think I would have regarded it with a high degree of scepticism if I had not been very definitely severely affected. Very hard to believe that the Establishment we are supposed to trust are doing this to our planet and to us. About a year ago I set out from Mullion Cove harbour in Cornwall for what I had planned to be a 5 mile row on the sea on my rowing skiff. This would have normally been well within my capability. I was not feeling well to start with but with my usual determination decided to go anyway thinking that I would feel better as I got under way. Within a very short time, however, I was running seriously short of breath, with watering eyes, muscle weakness and head pressure. I have just pulled out some photos taken at the time which revealed the presence of chemtrails.
Two weeks ago at home in Holyhead/Wales I had a particularly bad toxic day and there again chemtrails were clearly visible above.
After escaping from the toxic effects of slurry from a nearby newly developed factory dairy farm we moved from Devon to Holyhead in Wales. I had researched met office prevailing wind statistics, an important factor in deciding where to move to. On average the prevailing winds should have been from around the south west but during the 8 months we have been here there have been hardly any from that direction. Winds have been consistently from the northern sector. This seems to tie in with the video and the human manipulation of the jet stream.
On a similar theme, Barry Groves in the early chapters of his book 'Trick and Treat' uncovers some hard to believe harmful ways we are being misled by the medical establishment. He goes on to give very sound well scientifically referenced information and explanations on healthy eating and lifestyle. Along with my mercury detox this book has proved to be spot on for me. CFS/ME, pathogenic gut problems- candida - IBS and adrenal issues all now well under control. Still battling with MCS triggered by the factory farm slurry . This is seriously affecting cranial nerves to various degrees depending on the wind direction and I now have to say the presence of chemtrails. Otherwise I am physically and mentally fit and well.

My wife and I will shortly be heading off to check out the Outer Hebrides in search of a less polluted environment to move to. If I disappear of of the radar it will be because we are out of reach of broadband access.

9 years ago
Maff
Maff
That would be the cheapest and easiest option PDZ as the lightweight carbon filter masks are a lot more affordable than the bigger bits of kit. I felt rude suggesting you have a shave in case you were very emotionally attached to your beard!
9 years ago
Sink
Sink
The beard/mask problem could be easily solved with a simple razor should I decide to go that route!
9 years ago
Maff
Maff
In answer to Jodie's question - I'm not sure the I Can Breathe! mask itself was 100% sealed around my nose and mouth but its design/shape meant that the important part - the activated carbon filter - certainly was. It was only when the masks' straps started to lose their elasticity over time through daily use that gaps began to appear and VOCs made it through.
9 years ago
Maff
Maff
Wow, great discussion everyone! Some fantastic points made that hadn't crossed my mind. PDZ, as CanNZ points out your beard may be an issue with the lightweight I Can Breathe! mask. It's been a long time since I used them or had a good look at their product range - does anyone know if they offer different sizes or a more sturdy mask that might better suit PDZ and provide an airtight seal?
CaringCounselor Survivor - The community software we're using only gives 15 minutes to edit a post after you have added it. I will look into whether this can be extended. Thanks for the feedback.
9 years ago
CazNZ
CazNZ
Following on from your link below Jodie . . . www.youtube.com/…
9 years ago
Jodie
Jodie
ah thanks Caz, think I might try them. I don't need masks very often & this 3M one I have is expensive & doesn't have changeable filters.
9 years ago
CazNZ
CazNZ
PDZ would have a problem with the sealing of the icanbreathe mask because of his facial hair. Also, I was none too keen on the air valves which are optional. They added more weight to the mask and therefore the elastic pulled more on the ears. When the filter was positioned correctly around the bridge of nose there was a 100% seal on me. I use to use nose filters a lot too. I just had to remember to keep my "gob" closed.
9 years ago
CaringCounselor Survivor
CaringCounselor Survivor
Removed
9 years ago
CaringCounselor Survivor
CaringCounselor Survivor
Removed
9 years ago
Jodie
Jodie
Maff, did you find those masks had a good seal around your face? Random light masks like that which I've tried in the past don't have a good seal. If I need to go near serious chems (like near a bedroom being painted at the moment) I have to wear my huge Darth Vader mask
9 years ago
Jodie
Jodie
Of course it's not just people who are affected, article above is really very scary ..adding in separate message - doesn't seem to work embedded here!

Is it me or do the scientists get way more upset about the effect on wildlife than they do on people? Maybe cos the effect on wildlife ultimately affects us all because of the threat to food production, whether you are sensitive to chems or not. The last paragraph below is pretty typical of the whole of the chemical industry seems to me.

"Almost as concerning as what is known about neonicotinoids is what is not known, the researchers said. Most countries have no public data on the quantities or locations of the systemic pesticides being applied. The testing demanded by regulators to date has not determined the long-term effect of sub-lethal doses, nor has it assessed the impact of the combined impact of the cocktail of many pesticides encountered in most fields. The toxicity of neonicotinoids has only been established for very few of the species known to be exposed. For example, just four of the 25,000 known species of bee have been assessed. There is virtually no data on effects on reptiles or mammals."
9 years ago
CazNZ
CazNZ
Yes, supplements and a brain retraining programme did help but I moved to a near chemical free environment as well five years ago and before that I lived beside rivers and lakes in remote parts of New Zealand for two years in a campervan. So you are so correct in advising others in that direction. I really wonder if why different things work for different people is really the placebo effect (hence my move in that direction). I agree with you Jodie, it is an uphill battle no one to can win to actually educate others that we are indeed reacting to chemicals - I just accept now that I'm on my own.
9 years ago
Jodie
Jodie
Having ancient metal amalgams removed helped me the most, plus finding many ways to avoid everyday toxic chems. I was told when I first became ill nearly 20 yrs ago that I could have 'damaged mast cells'.. specialist did not know what had caused the damage but "something in the environment". I'm seeing another specialist next week who is an expert in Mast Cell Activation Disorder.. this now seems to have credence which it didn't even a couple of years ago. Mainly hoping for a label to stick on this thing to shut up those few individuals, medics & otherwise, who still like to tell me I'm making it all up..
9 years ago
Sink
Sink
Thanks Maff for the info re the filter mask. I recently purchased a very expensive indoor air filter machine which was impressively effective against the toxins that were troubling me but the machine itself gassed off toxins that affected me badly. Fortunately, the suppliers were good enough to give a full refund on return. I have recently picked up an interesting book 'How to Grow Fresh Air' by Dr B.C.Wolverton a scientist who has carried out research for NASA into how plants purify the air. Is there anyone out there who has tried this route? With my extreme sensitivity would I need to create a jungle in my home?
My big problem is that there just seems nowhere to go to get away from exposure from the air toxins that affect me. While it is possible to get reasonably well away from the industrial stuff there seems to be nowhere in the UK where livestock farming is not carried out. After selling up from near the factory dairy farm in North Devon, which initially triggered my MCS, a brief period on the west coast of central Wales provided a considerable degree of recovery during the initial period while the wind blew off of the open Atlantic. I even got back on my mountain bike and climbed mountains of Snowdonia. After some research we moved to Holyhead which has sea on three sides and very little in the way of livestock farming. According to met office figures the wind should have been from the sea for at least 80% of the time. During the 6 months we have been here, however, the opposite has been the case and only the very occasional SW wind has brought any relief and for most of the time the air here has for me proved to be very toxic. Monday last week developed into the very worst day I have ever had since developing MCS. When I looked up into the sky I noticed what clearly appeared to be chemtrails.
We are now planning an extended trip to the Outer Hebrides, to find out whether moving to the exposed west coast might provide an answer even though sheep might be an issue. We have tried the Shetland Isles but I failed to take into account the offshore North Sea oil rigs. A recent two day visit to the Outer Hebrides did provide some hope.
9 years ago
Maff
Maff
Well I was basically housebound at the time living out in the middle of nowhere in an apartment my dad owned by myself. I'd removed every source of VOCs from the place I could and rarely saw anybody so I really wasn't exposed to much anyway. The biggest exposures from day to day were exhaust fumes from passing vehicles when I walked the dog. I guess others suffering from MCS are still in an environment where they are exposed a lot more than I was!
Great to hear you're doing so well now Caz! Pall Supplements and The Gupta Programme are a powerful combination for recovery by all accounts - fantastic news. The book you mention also sounds very good, I will certainly be picking up a copy soon.
9 years ago
CazNZ
CazNZ
Gee Maff, you didn't have to change your filter much. When I first started using the mask I had to change it every 6-8 hours of use depending on where I'd been. I remember having to change the filter after only 1 hour once when I had to share a car with a heavily perfumed individual.
I've taken the Pall supplements and done the Gupta Programme for about 18 months. Both helped.
I've now spent about six weeks doing the meditation that goes with Joe Dispenza's book "You are the Placebo" - it teaches you how to be your own placebo. I'm seeing great results in recovery. There is a lot on Youtube about Joe if anyone is interested.
9 years ago
Maff
Maff
Hi PDZ,
I used masks from I Can Breathe! Specifically what they are now marketing as the 'Honeycomb Activated Carbon Filter (ACF) Pollution Mask'. I found it allowed me to be exposed to almost all chemicals as I was prior to MCS without reacting. These masks are very lightweight, although the straps do dig into your ears a bit. The only other gripe is they get a bit sweaty after wearing for prolonged periods but I imagine any such mask would! I found with daily use the masks lasted 3-4 months before the straps became too loose - I changed filters I think every month or two. They were a Godsend for me.
In terms of recovery I believe a combination of strict chemical (VOC) avoidance for 2-3 years and focusing on adrenal gland support (particularly DHEA and glandular supplements) was the formula that proved successful. A lot of research points to hypersensitivity in the limbic system of the brain in MCS which can be induced by either acute or chronic exposure to VOCs. In animal models at least removing the trigger(s) allows the reactivity of the limbic system to return to normal so it stands to reason that my strict chemical avoidance was key. Adrenal support helps as healthy adrenal function also helps calm the limbic system and prevent it from "over-reacting" to low-level stimuli like everyday chemical exposures.
CaringCounselor Survivor's experience with NAET is consistent with the above so that may be well worth giving a try if possible. Great quote as well "changing the brain to think there is no offender anymore" - agree completely. Anything that does that should help healing from MCS in my humble opinion!
Very sorry to read that the changing winds have sent polluted air your way and worsened your symptoms. Usually living near the coast or a large body of water is a good option for MCS. I hope we've given you a few things to consider at least. Best wishes.
9 years ago
CaringCounselor Survivor
CaringCounselor Survivor
Removed
9 years ago
Sink
Sink
Hi Maff, Please could you give information about the carbon face mask you used and how long it took to solve your MCS problem. I am becoming increasingly sensitive to livestock farming (nowhere in the UK to get away from this) traffic and industrial pollution and after monitoring wind direction for some time it seems that I am seriously picking up pollution from two large oil refineries even though these are about 200 miles away, one to the south and one to the north. Until recently I have been basically physically extremely fit and well but the MCS is increasingly affecting my cranial nerves, ie: balance, speech, hearing & disorientation. Until recently, being next to the sea with onshore wind resulted in progressive recovery but with recent persistent offshore winds the MCS has got alarmingly worse and I no longer experience the same degree of recovery during the few short periods of onshore wind.
9 years ago
M_Taylor
M_Taylor
I for one am hugely grateful Maff was able to recover from this horrible condition as we met in 2008 and bought our first house together almost a year ago!
Here's hoping you all find your way back to health and happiness also.
9 years ago

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