Multiple Chemical Sensitivity (MCS) - How Bad

[Mark]

Helsbells, I really feel for you in that awful situation. What a nightmare!



It is so hard to control the things we need to, because so little is under our control, and the awareness of the issues is so poor - due mainly, of course, to the scepticism of those ignorant of the reality of our experience of the illness and - most importantly perhaps - of how it is dealt with.

I suppose you have air filter/control equipment of some kind in effect. Wonder whether something like that can get to work on fumes a bit?

With such a big problem for you to tackle, all I can really think of to say is, all the best with regaining a degree of environmental control, we absolutely need an oasis, our safe haven, and use that as a starting point for regaining some wider control, and we do need to keep working at it to get that, all the detoxing and nutritional work will only go so far if we're still in a toxic environment - inside the home and out...

I have been meaning to suggest setting up an MCS group and a mold group on this forum - of course others can do that too if it's a suitable idea....I haven't used the vBulletin groups feature yet though and have so many other projects on the go that I haven't got round to it, but if somebody else could set one up, that'd be just super. Needn't be much work necessarily, in that many hands make light work. Examples of jobs would be:
Mining the forum (using search) for existing threads, discussions etc and pulling out all the best bits. Collaboratively editing one or two posts in a kind of wiki style, to extract and catalogue "the forum's" best knowledge and tips re MCS and also re mold. Actually, not sure whether we've got anything resembling a subsection for these, so that will be a possibility if we find enough stuff and if there's enough interest in that. It would also be very interesting to me to explore similarities and differences between us in terms of how our reactions to these triggers relates to other secondary symptoms, and to try to understand how this fits into the wider picture of ME/CFS.

Hope all this work appeals to you folk. Should pay off for us I think if enough people are up for it. There is a lot of good info already here, that we can share favourite links to, for a start...

 

[Mark]

Also:

- Healthy House and Allergy UK have both been extremely helpful to me. Oases.

- I have formaldehyde sensitivity, verified by biolab, along with the pattern others describe, as I say: verified and confirmed, as all these tests confirmed, relatively blind, the fine details I already knew, gave great guidance on additional sensitivities which proved pivotal in understanding what I need to avoid (PBDEs also, washing powders and liquids of all kinds, everything has the relevant chemical in, forget the name of that one, will post later). Those tests were expensive for me though, although I did get a lot of very good tests done which was always my informed choice as to which ones to go for of course. Biolab: quality service: 5 stars.

- Also lots of food sensitivities and environmental sensitivities, found with the help of Allergy UK, that was a brilliant and well worthwhile investment, if they are running that test near you I can recommend it, although I think various more sensitive test options are probably available elsewhere, generally more expensive than that one though, everything I've seen. Value for money: 5 stars.

- Haven't ever tried EPD or the similar treatments that are emerging, but I did rather suspect that it might get complicated, like B12 and magnesium etc also, they do all have some obvious efficacy but the detailed way to get best administration is perhaps not fully understood yet so experience may vary - see the complexities of the B12 thread to get a sense of that! And of course you always do take a degree of risk that any treatment might have complications, and that's all of course a matter of personal choice, but these treatments do sound very promising.

- Thanks everyone for sharing!

 

[cgstar4]

MCS

caledonia

 

[caledonia]

'outgas' - I've never heard of this term please can you explain what it is.

This is when the volatile organic compounds (VOC's for short) such as plasticizers, formaldehyde, solvents, etc. come out of paint, carpet, a new car, particle board, etc. This is what gives a new car that "new car smell" for example. Or what gives house paint it's smell. The smell is worse when the item is new or when the paint is newly applied, but it will continue to slowly give off solvents, formaldehyde, plasticizers, etc. for years potentially.

You can greatly speed up the process by heating and cooling your car, house, etc. as I described, which forces the VOC's out at an accelerated rate. You keep up the heating and cooling process until you don't smell the VOC's anymore.

 

[helsbells]

Helsbells, I really feel for you in that awful situation. What a nightmare!



It is so hard to control the things we need to, because so little is under our control, and the awareness of the issues is so poor - due mainly, of course, to the scepticism of those ignorant of the reality of our experience of the illness and - most importantly perhaps - of how it is dealt with.

I suppose you have air filter/control equipment of some kind in effect. Wonder whether something like that can get to work on fumes a bit?

With such a big problem for you to tackle, all I can really think of to say is, all the best with regaining a degree of environmental control, we absolutely need an oasis, our safe haven, and use that as a starting point for regaining some wider control, and we do need to keep working at it to get that, all the detoxing and nutritional work will only go so far if we're still in a toxic environment - inside the home and out...

I have been meaning to suggest setting up an MCS group and a mold group on this forum - of course others can do that too if it's a suitable idea....I haven't used the vBulletin groups feature yet though and have so many other projects on the go that I haven't got round to it, but if somebody else could set one up, that'd be just super. Needn't be much work necessarily, in that many hands make light work. Examples of jobs would be:
Mining the forum (using search) for existing threads, discussions etc and pulling out all the best bits. Collaboratively editing one or two posts in a kind of wiki style, to extract and catalogue "the forum's" best knowledge and tips re MCS and also re mold. Actually, not sure whether we've got anything resembling a subsection for these, so that will be a possibility if we find enough stuff and if there's enough interest in that. It would also be very interesting to me to explore similarities and differences between us in terms of how our reactions to these triggers relates to other secondary symptoms, and to try to understand how this fits into the wider picture of ME/CFS.

Hope all this work appeals to you folk. Should pay off for us I think if enough people are up for it. There is a lot of good info already here, that we can share favourite links to, for a start...

I think this would be great because they're are products that are safer but between their claims and peoples actual experience is where the truth lies. I have friends that follow certain rules as they are a bit sensitive but for me my problems are so wideranging, chemicals, emfs vitamins etc that I always have to follow best practise. The problem is actually knowing what that is! I would have been capable of understanding some of the science before being ill but now no chance. i am currently trying to get my head around some house wiring issues EG there is an alarm in this house we have moved to altho I don't use it the power light is still on - does that mean the cable is still giving off anything? What about the sensor in the room. In fact on hteis subject can anyone recomend a UK available book on a basicish level regarding this stuff. Soemoen once told me there was two ways to wire a house, on a circuit and on a sort of tree pattern, the latter being the better I have no way of know ing if this is true or not. Similarly we have taken dusty perfume carpets up in bedroom but notice the boards have a wood smell. This WILL affect me - does it need to be sealed or would ecos floorpaint be enoug to provide some sort of seal. Any depository of info would be fantasic and I would happily trwal through as this info is tremendously useful to me. Thanks to everone for your support and suggestions - please forgive th etypos - the comp room still has dusty carpet and my posts are currently a bit like stream of consciousness ramblings which I appreciate are not "best prectise" for PWME's

 

[maryb]

Caledonia
Agree with everyone about the intolerances to foods and supplements, its such a pain not to say very expensive, I'm sure we all have cupboards full of stuff we are unable to tolerate. Just off topic a bit but has anyone actually found a B complex that they can tolerate?

 

[lostinthedesert]

This is frustrating. I have lost several long posts to this thread in the last day. Must be brief or i will loose this. Hope to get real internet of some sort soon. The biggest thing to remember is that we are all different. We can suggest things but each must try for themselves according to their own experience and judgement. Some things have worked out for me others have been disasters. There are some things that cannot be outgassed or practically sealed enough for me that others can tolerate. There are also some things that i do well with that others cannot tolerate. It makes it very hard for mcs folks to share housing. This is much shorter maybe it will make it. S

 

[flybro]

B complex

I regularly drink red-bull type energy drinks, the ones i use are called Stimulation Drink classic from a German company called Lidels, in England we have these stores in most main areas.

yes there are bad componenents to the drink, but it is one sure fire way of getting the B's down my neck.

with out these drinks i have more time in bed and far less brain power.

I havent found them addictive, and have stopped using them from time to time to see what the pro's and con's are. I found far more pro's tha cons.

 

[maryb]

Flybro thanks it sounds great but I don't think I dare I'm wired on a little ordinary coffee, can only have de-caff, when I get better I'll definitely try it with a vodka

 

[lostinthedesert]

Alas, my only internet access is through an old, beat up cell phone. Runs one app at a time with no cut + paste. I was lucky enough to find an old aftermarket browser that sometimes lets me post. There is no wired internet out here and certainly none out where i usually camp. Sigh, S

 

[lostinthedesert]

And PR = ? Polyrhythm? Puerto Rico? Are you attempting to deconstruct yours truly? We all have our own particular situations, abilities, access to resources\assistance and immediate priorities. peace s

 

[strawberry]

This is when the volatile organic compounds (VOC's for short) such as plasticizers, formaldehyde, solvents, etc. come out of paint, carpet, a new car, particle board, etc. This is what gives a new car that "new car smell" for example. Or what gives house paint it's smell. The smell is worse when the item is new or when the paint is newly applied, but it will continue to slowly give off solvents, formaldehyde, plasticizers, etc. for years potentially.

You can greatly speed up the process by heating and cooling your car, house, etc. as I described, which forces the VOC's out at an accelerated rate. You keep up the heating and cooling process until you don't smell the VOC's anymore.

I've been always sensitive to this kind of thing. The "new car smell" and offgassing carpets make me feel really sick and cause headache, stinging eyes, mild cognitive dysfunction, and nausea. To me they are poisons that must be avoided. I also dislike oil-based paints, certain glues and varnishes, perfumes and air fresheners.

Since having ME I have also become very sensitive to certain medicines and processed foods. They feel toxic so I prefer to avoid them. This problem has become less severe as my disease has improved however.

 

[Tammie]

just wanted to say that I can really relate to having very bad MCS.....was allergic to some things and had asthma before getting ME/CFS, but since getting sick I have developed increasingly bad MCS - feels like I am allergic to the world....living in an apt with it is really tough, too - so little I can control as far as exposures go

i think starting a section on these boards fro MCS would be wonderful

 

[Victoria]

This is frustrating. I have lost several long posts to this thread in the last day. Must be brief or i will loose this. Hope to get real internet of some sort soon. The biggest thing to remember is that we are all different. We can suggest things but each must try for themselves according to their own experience and judgement. Some things have worked out for me others have been disasters. There are some things that cannot be outgassed or practically sealed enough for me that others can tolerate. There are also some things that i do well with that others cannot tolerate. It makes it very hard for mcs folks to share housing. This is much shorter maybe it will make it. S

Lostinthedesert,

I was having trouble losing posts all the time, but now (after a few sentences) I just press "Preview Post" & then add a bit more, press "Preview Post" etc over & over & now seem to be able to type longer posts without losing them.

Have you tried this? It has been suggested to me to type in Word & copy it across to PR, but when I start writing, I never think I am going to actually write a long post.

It's most frustrating.

Back to the MCS thing.......

I have much milder MCS than most members writing on this thread, but would welcome an area devoted to it.

Feb 2004 when I still had the severe diarrhoea & IBS stuff was when my MCS was at it's worst, but then improved for a few years. It's got worse about 8-9 months ago, and the severe headaches started about Oct when I bought a scanner & my brother gave me an old computer (so I could access the internet at home, instead of only at work).

What really annoyed me was the Opthamologist (Dec 2009), said to me...."How did I know I had MCS? Had I been tested?"

(My BP goes up just writing that sentence).

I felt like saying "Because you (excuse the language, but) f**k**g idiot, every time I come close to strong chemicals, perfumes, car fumes, cigarett smoke etc I have trouble breathing & get instant migraine type head pain & dizziness." Also sore throat & hoarse voice.

I nearly choked at work one day because a new staff cleaner sprayed air freshener in the restroom about 5 feet away from my office. Other staff had to almost carry me outside & then open every window (for quite a long time before I could re-enter the office). The coughing fit scared the hell out of the other staff, they thought I was choking.

My only consolation in my old job was that there were 2 other staff who were super sensitive to chemicals & perfumes, one was a migrane suffererer & the other came out in severe body rashes from aerosols/perfumes/dishwashing liquid & ordinary hand soap. The migraine sufferer & I, both had reactions when we moved into our new offices some 4 years ago.

I dealt with my reaction to the new carpet/office by having an electric diffuser on all day with several drops of lavender oil in it (& kept topping it up as the Lavender oil evaporated). Amused me that some staff who thought I was overreacting in past years, came into my office to get a few whiffs of the lavender oil as it helped them with the new carpet/air conditioner etc. reactions.

I really feel for all of you that are extremely sensitive. I only have an inkling of how it must feel, but I do sympathise.

Now I'm not working, I find it easier to stay home most of the time. I've had a hoarse voice & a bit of dizziness working out in the garden today. Must have been something around in the air I guess. Better tonight now I'm inside. Maybe the pollution on the main city thoroughfare at the end of my small street, built up so that the couple of hours this afternnon that I was outside, I got a full blast of car fumes floating across in the wind.

Just bought a new (terribly expensive) organic shampoo & conditioner over the weekend to try. Strong smell, rather intoxicating actually. Not perfume, but sort of like sweet honey or food smell. I'm not allergic to it, rather more a case of intoxicated by it. I wonder if I could get "addicted" to it? Weird reaction, but nice I must say. It's made in the US, of all places - I usually try to buy "Australian made" to support local producers.

The Naturapath in the Health shop on Saturday, said it's not expensive because it lasts about 8 months for him - hope so, the price was about 3 times the cost of normal shampoo & conditioner.

By the way, I used to smoke menthol cigarettes about 27 yrs ago, & burn incense regularly many years ago, funny that I can't stand the smell of cigarette smoke now. I had to give all my incense away about 4 years ago.

I have a severe reaction these days, to what I think is, a men's deodorant (when i get on public transport). I think there is cederwood essential oil in it. Funny that one too - I used to love a French cedarwood incense many years ago.

And as a trained Aromatherapist, I can now only tolerate about 20% of the essential oils I have.

I hear many "normal" people complaining about fumes & chemicals these days. I suspect we are altering the natural environment to such extremes that we will find many more people developing MCS in the near future.

I wish I could afford to move to the country - it has to be better away from the city pollution.

 

[lostinthedesert]

DOH! *slaps head* PR = Phoenix Rising. Maarten, forgive my comment. I completely misunderstood. More to say but i lost another long post. Now i will try for a nap. S

 

[hoMEy]

i have acute mcs, tho i did get over it twice but its back now with a veangence. i haven't had a visitor to my house in many years, it can be a very isolating problem. i have used healthy house also and think they're pretty good. i prefer [video]http://www.greenshop.co.uk/[/video] for painting and decorating as they are the uk distrubutors of "auro" paints which are apperently the most ecologically uncomprimsing brand on the market.

i have heard from more than one source that "eco-paints" do not disclose all ingredients and after using it on one room , i would concur. but saying that its right that some are ok with one thing and others not ok with similar. you can also get radiator paints to seal in the formeldahyde and even the wall paints can have an atmosphere cleansing catalyst in it. it's all rather expensive though but unfortunately has been a must. i also have cork tiling throughout my bungalow with natural glue and wax finish. sonett i find is the best washing powder, but expensive, although it goes a long way. i also use organicx untreated bedding as i find the easy treatments in stuff makes me bad. even made my own mattress out of felted wool covered in canvas...couldn't believe how much more relaxed i felt in it. apparently metals springs are not good fer some...

i've constructed a cardboard and perspex box for reading books and also have a pipe i jam in the window in the car sio i get fresh'ish air as i'm driving as the car smell is yuck. another trick i did for the car was to disconnect the fan that sucks air into thew car. they turn on automatically as you switch the car on incase you have the heater going and it overheats...in most cars it draws air directly from the front engine department...yuck! quite summat in wintwer, with 3 layers of clothing, freezing air full blast in my face...brrrr...it can certainly make you go to what appear to be extreme lengths to others.

my housing association want to upgrade my central heating at thew mo, which ordinarily would be ace, but with mcs its a huge no, no. the main prob. is newradiators, but having looked into it, there are natural stone radiators (marble or granite) that have no treatments at al, just plain good ole stone. very expensive and look lovely, so hopefully they'll put them in...its their only choice, i'll board the doors up if they try n put owt else in there...i dunno, rant over...praps there's some info in there that'll help others...treatment wise i have used "a 3 set of angel pulsors (red, blue, green)" from kadance.com. they are tested and poroved for emf but work well for my mcs...they remove the positive charge from chemicals allowing them to be more easily excreted...do it yourself complimentary therapy at its best imo, also the only treatment i have always been able to tolerate and so relaxing....i hope y'all find some respite from mcs, its a real tester...

 

[helsbells]

Thanks for the info hoMEy I started to type a message to join in with the discussion before realising I had started the thread in the first place, Cor brain fog eh you've got laugh ( I thought there was a sarcastic face, perhaps you could imagine one at this point)

It is still a serious problem - thought things might have calmed down, upset stomache, my food group is rapidly downsizing again, moderate depression so I know all is is not well in reaction land. Funnily enough I have managed to get rid of the perfumed smell in one bedroom by partner literally painting every surface with ecos paint, only to discover the smell of the pine boards were coming through the floor paint. Does any one else have a problem with outgassing pine - i am super bad with this but never heard anyone else mention it. So i have just been on the phone to ecos and they have made special tin of floorpaint with the purifying paint added so we shall see if it helps, i hope so or i reckon my beleaguered partner will be ready for a breakdown too.

I totally hear you about the isolation - once upon a time long long ago I used to be quite social but friends haven't been able to stay for ages inc my dear friend who just try as he might is just too fragrant - one time he had to sit in his pants on the sofa but you obviously can't ask many houseguests to do that LOL and unfortunately I am worse MCS wise than I was at that point. As you say also being ill is an expensive business and products suitable for MCS seems to be particularly so. Are you from the North or Summat.........:Retro wink:

Thanks for your input eveyone, I am actually finding this much more trying than ME at the mo

 

[lono]

MCS and Vasoactive Intestinal Peptide (VIP)

I'm very curious to hear whether anyone with multiple chemical sensitivity (MCS) has ever had their vasoactive intestinal peptide (VIP) level checked?

There are emerging reports that many/most (all?) folks with MCS have low VIP levels. Several of the reports are posted here.

In my personal case, I've been able to raise my vasoactive intestinal peptide levels a bit over the last six months and there has been a diminishment of my MCS symptoms. They're certainly not gone, but they are better.

I'd be very interested to hear if anyone else with MCS has had their VIP checked. It's easy to get it tested at Labcorp in the United States (it's test code #10397). I've had it tested several times and it was covered by my insurance.

 

[helsbells]

I am in UK so this has never even been flagged up and I am interested. The thing is when I say I have MCS it is severe and most vit supps are beyond me so if it requires meds I will be unlikely to tolerate. i am also interested to read Aviptadil acts as a potent systemic vasodilator but I drink coffee for the opposite reasons as it is the only that temporarily lifts brain fog sufficiently for me to be able to post (I have POTs/dysautonomia etc) - so unsure what it would do there?

 

[Tom]

Don't Get Upset

Hi ,
Did anyone watch the recent Komaroff video?
From watching it and with reading lots of posts on this forum, searching the net etc., this is how I see it.
There is no MCS , there is M.E /CFS
In M.E/CFS what I call the Master Controll Room , the part of your brain that contains the hypothalmus and hippocampus and connects with the Central Nervous System. This is all screwed up by what is going on and is overloaded with all kinds of stuff plus the inflamation.
Take one smell, goes straight up your nose into the control room, reaction melt down.
The control room isn't processing the information as in healthy people, so your body reacts badly.
The other inputs create the same effect, your eyes, your mouth, your ears and your skin.
If something does get through your mouth without causing problems , the problems can occur once it gets to your gut, because that is screwed up as well.
Then it gets to Leaky Gut into the blood and because the blood brain barrier isn't perfect the downward spiral continues.
To my way of thinking it made sense to me to find a way to get the crud out of the master control room.

Hope some of the above can make some sense to others.

Tom