MCS Questions and Recovery Stories
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!
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!
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
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.
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 .
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
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!
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!
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.
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.
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.
I took Boulder Psychic Institute's www.BoulderPsychicInstitute.org Self-Healing program which was teleclass, learning Energy Medicine to HEAL MYSELF. Yes, I think Adrenal supplements and all MAFF said was right on! It is a combination of items, and working with rewiring the mind, changing the neuropathways to shift out of fight or flight reaction to an offender. As you do that, your immune system goes up because your 'body feels safer', than the 'dangerous MCS reactions' can decrease. PLEASE see 'Your body is your subconscious mind' by Dr. Candice Pert, Physicist. It is another way to go into the mind to heal the body. It took me years to come back, believe me it was not easy. I did many things. It was a long road but there is hope. However, I must emphasize 'understanding energy' is a must. It might sound silly, but when I work with my MCS clients, as well as myself in the past, it was the greatest modality besides the supplements MAFF stated and his recommendations. Detoxing with California Earth Minerals 'clay' from 'mother earth' was also a necessity for me and quite powerful for me www.CaliforniaEarthMinerals.com
[BR] I too was diagnosed with Mast Cell Activation Disorder by Dr. Gunnar Heuser, MCS specialist. Please see this very important article: www.tldp.com/issue/210/… I never did do a thing about it because I had to leave my home due to exposure to Black Mold, left LA and moved to Colorado, cleaner air (so helpful).
But, before I left LA, I again had Pesticide poisoning, 2nd injury after having this in prior years from Medfly spraying (Pesticide Poisoning in LA), see here: www.caringcounselor.com/… know how I am alive with all that I went through…. but I finally got out of LA and found my way to health without Dr. Heuser's help. What I want you to know is I WENT AROUND CHASING DIAGNOSES AND WAY TO 'FIX' THIE SITUATION, FINALLY REALIZED I DIDN'T WANT TO KNOW ANYMORE, I just wanted to shift from the state I was in so I found alternative ways to do so after YEARS OF BEING SEVERLY ILL WITH NO ONE HELPING ME AND SO MANY GOOD DOCTORS, LIKE DR. HAUSER, Plus SAW NEUROTOXOLOGIST DR. GARY ORDOG too www.themoldsource.com/…, AND many other amazing specialists along the way. But, learning about Energy Medicine to SAVE MYSELF, as I WAS TOO SENSITIVE TO DO ANYTHING ELSE, was an important piece to recovery.
I KNEW I WANTED TO HEAL IN A HEALTHY AND SAFE WAY, WHICH I EVENTUALLY did, rather than running around to MD's and getting sicker and sicker. I wanted to take back CONTROL OF MY BODY. I than shifted gears and realized I WAS SO SENSITIVE TO THE WORLD THAT THE ONLY THING I COULD REALLY TOLERATE WAS ENERGY MEDICINE. EVEN THAT, I HAD TO DISCERN WHO I WANTED TO WORK ON MY BODY, AS I FELT ENERGY so much, being a 'sensitive' at that time. I could feel 'sticky' practitioners energy vs 'clean clear healing' energy. I had electromagnetic sensitivities, lights, sounds, phone, computer, whole environment was hurting me. As I said previously, I wore a mask (bought through www.needs.com (Enviornmental site). Personal, how masks fit and what works for one person not always for another. I tried so many kinds. At one point, I had a huge mask with filters, that they use for those who paint, and I had to use THAT in the world, see here: www.uline.com/Product/Detail/H-3390/Dust-Masks-and-Respirators/…. When I looked online I just saw this, might help others, smaller and user friendly but powerful: www.uline.com/Product/Detail/S-17013/Dust-Masks-and-Respirators/…
So, I had to go out of the box to save my life. This I recommend for those who are still suffering. I am Psychotherapist who specializes in MCS, having healed myself. Please take what you want and leave the rest if this does not resonate with you. I am only telling you what I did to save my life, as I was dying from this condition and trapped in my home, isolated, not living life, fearful as my environment was dangerous to me! I know you understand what I am saying, how terrified I was to be 'in the world'.
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."
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.
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.
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.
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.
I had MCS, I wore a mask, oxygen tank, gloves, the girl in the bubble, for many years. I did a number of things to get well….I really liked Boulder Psychic Institute's 'self-healing 101,102,103' teleclasses - www.BoulderPsychicInstitute.org, which keeps me balanced to this day. I learned some important energy tools to keep functioning in this toxic world. I feel Energy Medicine is most helpful when suffering from MCS, in my opinion. Changing the brain to think there is no offender anymore.
Here's hoping you all find your way back to health and happiness also.
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