Multiple Chemical Sensitivity (MCS) - How Bad

[helsbells]

But how would you do that? I just started to watch the vid but getting a bit foggy now to concentrate on voices. MCS might be a symptom of ME but it is the one that circumvents mosts therapies to tackle the ME so what do you do? Catch 22.

 

[lono]

helsbells

1. Because doctors have not traditionally focused on a VIP deficiency causing adverse health reactions, not much thought has been given to how to raise VIP.
2. If more and more MCS people start reporting that they have low VIP, then hopefully some doctors will start focusing on this. Remember at the moment the medical establishment claims that there are no biomarkers for MCS.
3. VIP is not a perfect potential biomarker for MCS because there are folks who have low VIP who do not develop MCS (they're very, very lucky). However, I keep hearing about more and more people who have MCS who also have low VIP. I think that's something worth looking into.
4. I have no idea if the National Health Service in the UK will order a VIP test for you. But it's worth inquiring about. In the United States, it should be easy to get tested and insurance should cover (Labcorp test code #10397).

 

[helsbells]

@helsbells

4. I have no idea if the National Health Service in the UK will order a VIP test for you. But it's worth inquiring about.

:Sign Good one: I was trying to find one they have on other forums of the little person rolling about laughing.

This isn't a slight at you lono I really appreciate the heads up, MCs treatment in the UK is extremely primitive, and I am unusual in actually even having that as one of diagnosis (diagnosii??) on NHS letter headed paper - super unusual.

I am going to look into it though as once upon a time I even considered going out to Dr Rea's centre in Texas but held back as I am keeping my one shot deal finances for something i canot resist, (watching stem cell developments currently with interest.) Maybe I could arrange it privately if costs aren't prohibitive??

Many thanks again for your thoughtful response

 

[hoMEy]

hi helbells,
i'm from the midlands, gloucestershire..."ooo arrr..." - thats sposed to be me carrot cruncher impersonation lol!. i spose if eco's are ok with you then go with them but i did find "auro" much better and even the natural odour went quicker. i spose you find summat good you don't want to experiment in case it's worse. cost me a fortune to do the whole house :-/ did the radiators in just natural wall paint, worked o.k. lol @ the houseg uest in pants n fair shout to them fer doing it! i really don't want to belittle m.e. as it's heavy, heavy stuff fer sure but mcs as well is another level, the things it forces you to do...i live in fear of the farmers round here, folk painting fences etc...housing association wanting to do work in the house...what happens i'm in a crash and end up in hospital - i'd get real bad just sitting in their, dentist's utterly destroy me etc etc...i think things like mcs and m.e. are gonna explode and loadsa folks will have it, praps that'll force changes...

sounds like you need to do a cover job in that house, hope it gets easier eh, as mark said need, need, need that safe haven. i can imagine ur partner scratching his head over it all...sounds like he's supportive, i hope so, its not summat you can second guess, it needs to be exactly how you need it to be. i'm gonna buy a tent etc and offgas the lot for next summer in case they wanna do work here etc + it'll be a back-up....lostinthedesert...your story sounds well heavy, glad you got a room at the mo...wish i owned my own gaff so no-one comes in unless i say and it'd be where i wanted. i'm holed up in my bedroom at the mo as i've just had the back windows and patio doors painted on the outside, but still gets in...the auro paints i used on the front were gone in about 7 days (slept inb the living room then), so got a couple to go. still, its better than the housing association doing toxic stuff which would've made me homeless...

hope you get it all covered as soon as is poss....atb...

 

[Tom]

Helsbells,
take time with the video , it lasts an hour, but good stuff , goes into the possible causes of M.E.
To fix the aster control room.
Firstly continue avoiding anythng that sets it off.
Diet.. stone age is probably the most recommended one.
Get the crud out.....I'm using the Perrin technique.
Control , damp down the inflamation.....I'm using Enhansa.

It's possible /highly likely that some/most people may have irreparable neurological effects and also probable that some people will have irreparable physical effects, but all the weird symptoms , pains and suffering etc may be ruduced or controlled or allieviated completely.
You would still have M.E/CFS as no cure yet exists.
Hope this helps,
Tom

 

[hoMEy]

my take on the causes iare a weakened spleen (blood), lungs and colon along with leaky gut. these are where outside meets inside...if you can't deal with food in the first place then chems would also cause a problem by degree. i think healing the gut wall and mucous membrane is key for me poersonally...when i have done this in past my mcs went to...but then i used to have m.e. without mcs, so it's not cut and dry...it seems pretty much all m.e.ers have some mcs...i think! though generally much milder, not to say they don't have worse symptons elsewhere, like fogginess etc...i have succes with low g.i. diet, and yh get the crud out, get that lymph moving...

 

[Dainty]

I have severe MCS. With an airborne exposure my most common reaction is my throat spasming shut, restricting or completely cutting off my airflow. With an ingested exposure to chemicals I get a stomach ache, then vomiting with loss of bowel control. Note this is not my reaction to food sensitivities/intoelrances, just when there's a chemical exposure in the food I normally tolerate well.

I live in a porcelain trailer to avoid exposures. Before that I had become worse and worse until I was living in a bathroom 24/7 for several months, because every other room of the house was intolerable reactions.

My clothing has to all be homemade of unbleached, undyed organic fabric that's been boiled for a day or two, soaked in baking soda overnight, soaked in vinegar overnight, and then washed, then I test the fabric and if it's still not tolerable my caretaker goes through the whole process again. It must be line-dried due to the rubber fumes of the dryer. I became reactive to all my bedding, and until we could make a mattress I slept on bare wooden slats. I cannot tolerate soap, even organic soap with a single ingredient, so I do without. The only way I can be on the computer is because the fume-producing monitor is several feet away fro me in a closed cupboard with a hole leading tot he outside and a fan to create an airflow the blows the fumes out instead of in.

Even with keeping the doors and windows shut and an air purifier on high, when air pollution gets really bad in my area I'm forced to flee to cleaner air, because enough seeps in through the cracks to be life-threatening for me. Thankfully, there is a car that I don't react too badly to short term, and we're constantly in search of "safe houses" that I can stay in during just such emergency situaitons. I currently might have one...we'll find out this July 4th.

You know what I miss most? I miss being able to hug people and get a hug back. About a year ago was the last time I did so...got really ill from the exposure, but it was worth it...that time. I wish hugs were free.

 

[hoMEy]

i have my pc tower in a large wooden chest cos of the odour it gives off when it gets hot, fortunately its big enough that i don't have to take a hose from the chest to the outside and have the mouse (old ball mouse! as the infra red ones make my hands swell up) and keyboard on about 2-3metres of extension cable. one thing i have found is that even the untreated organic bedding i've bought, and anything else for that matter, seems to pick up an odour if the sun shines on it, so i dry everything in doors, might not be the same fer others. wow some serious problems here...i've even taped up keyholes in the past, i'm sure if folk saw me do that, they'd think me crazy. it's kinda nice to know ur not alone allthough i would of course prefer it if it were just me as it's a real difficult one...has anyone seen the film "safe" with julianne moore...good film bout a lady who ends up in a porcelain igloo...very well acted and believable...

"safe" movie trailer

 

[willow]

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.

Helsbel,
Know this isn't a top priority with all your home MCS woes, what a huge worry, but re visitors have you tried issuing them with a bunch of toiletries etc that you find acceptable, asked them to avoid air fresheners etc (evil stuff, aren't artificial scents endocrine inhibitors? good scare scare at least :innocent1 and have a set of EI frindly clothes you can ask them to change in to before they come in your home. I've a friend in the Snowflake MCS community and for her the clothes change is key.

Re the MCS as a symptom of ME, for some yeah, but I have memories of my MCS preceding my ME. Mild MCS from a toddler, my Mum said I reacted badly to all pharma even then, also car fumes and other severe reactions, didn't notice the ME until age 10 or so (gradual onset).

I hope your home becomes safe very soon. Great partner! I think my next paint experiemnt will be Earthborn. Ecos is loads better than normal paint, but my nose hopes it can be bettered .

 

[helsbells]

hi helbells,
i'm from the midlands, gloucestershire..."ooo arrr..." - thats sposed to be me carrot cruncher impersonation lol!. i spose if eco's are ok with you then go with them but i did find "auro" much better and even the natural odour went quicker. i spose you find summat good you don't want to experiment in case it's worse. cost me a fortune to do the whole house :-/ did the radiators in just natural wall paint, worked o.k. lol @ the houseg uest in pants n fair shout to them fer doing it! i really don't want to belittle m.e. as it's heavy, heavy stuff fer sure but mcs as well is another level, the things it forces you to do...i live in fear of the farmers round here, folk painting fences etc...housing association wanting to do work in the house...what happens i'm in a crash and end up in hospital - i'd get real bad just sitting in their, dentist's utterly destroy me etc etc...i think things like mcs and m.e. are gonna explode and loadsa folks will have it, praps that'll force changes...

sounds like you need to do a cover job in that house, hope it gets easier eh, as mark said need, need, need that safe haven. i can imagine ur partner scratching his head over it all...sounds like he's supportive, i hope so, its not summat you can second guess, it needs to be exactly how you need it to be.
QUOTE]

I agree totally for me my ME/POTS etc is pretty bad, brain fog means I can't read or do much but MCS is like living in a bubble - at least I "could be taken to places" before even if I couldn't do a lot and I MISS people, lovely smelly real live human beans who remind me im in a world not a bubble. Ditto re the cost - its costing me a fortune to do one room. I also get your worry about the country it is soemthing I would think about - difficult to get away from phone masts in the City if you have EMF problems but the areas are more controllable. Ironically the reason we moved was to put space between ourselves, so moved from a terraced to a less nice but detached house, as smells and noise coming through were a real problem (particularly a problem when as I said earlier they started farming canabis on a large scale) but I am worse here so far!! I have got to the point though with it I am so tired and poorly i would sooner be on here than using what little energy I have constructively thinking what could be done in the house and sometimes I actually just can't tell where exactly the problem is. My partner is caring but honestly i think he's at the end of his rope with it all and honestly sometimes I do have a tendancy to say something is fine because I hate causing stress in others and always being the one whos whinging - that is so far from my well life identity it is really painful.

Thanks for reply and have a good day, hope you don't have to fend any visiters off at the door with a pitchfork

 

[helsbells]

Sorry, I forgot to add:

The Pall Protocol helped some with brain fog also, but did little, if anything, for fatigue or PEM.

We did, however, do better on Valcyte when we were taking the Pall supplements, so we'll trying them again in conjunction with Valcyte.

I'm not trying to endorse these products, just sharing our experience.

PS Someone please let me know if anything in my posts is inappropriate here and I'll take them down immediately.

Just a problem taking anything because of the mcs, sorry to keep banging on about but this really does mean I struggle with vits as much as anything, I know I do have high viral titers (if thats the right word) but AVs are not an option. I did try valcyclovir but predicabley had to stop and am so ill at the moment that the new tap water is giving me diareah just the bit I use in hot drinks (drink bottled for most part) and as you say I think valcytle is supposed to be better but more side effects. It is frustrating but what can you do?

 

[helsbells]

Hi Tom

I actually did the perrin technique didn't do a lot for me but i will look into the Enhansa as i have been thinking about curcumin - no guarantee I will be able to take it but damping down inflamation sounds good and worth a try - thanks!

 

[helsbells]

I have severe MCS. With an airborne exposure my most common reaction is my throat spasming shut, restricting or completely cutting off my airflow. With an ingested exposure to chemicals I get a stomach ache, then vomiting with loss of bowel control. Note this is not my reaction to food sensitivities/intoelrances, just when there's a chemical exposure in the food I normally tolerate well.

I live in a porcelain trailer to avoid exposures. Before that I had become worse and worse until I was living in a bathroom 24/7 for several months, because every other room of the house was intolerable reactions.

My clothing has to all be homemade of unbleached, undyed organic fabric that's been boiled for a day or two, soaked in baking soda overnight, soaked in vinegar overnight, and then washed, then I test the fabric and if it's still not tolerable my caretaker goes through the whole process again. It must be line-dried due to the rubber fumes of the dryer. I became reactive to all my bedding, and until we could make a mattress I slept on bare wooden slats. I cannot tolerate soap, even organic soap with a single ingredient, so I do without. The only way I can be on the computer is because the fume-producing monitor is several feet away fro me in a closed cupboard with a hole leading tot he outside and a fan to create an airflow the blows the fumes out instead of in.

Even with keeping the doors and windows shut and an air purifier on high, when air pollution gets really bad in my area I'm forced to flee to cleaner air, because enough seeps in through the cracks to be life-threatening for me. Thankfully, there is a car that I don't react too badly to short term, and we're constantly in search of "safe houses" that I can stay in during just such emergency situaitons. I currently might have one...we'll find out this July 4th.

You know what I miss most? I miss being able to hug people and get a hug back. About a year ago was the last time I did so...got really ill from the exposure, but it was worth it...that time. I wish hugs were free.

Dainty my heart absolutely goes out to you it really is the stuff of madness to be so out of step with the modern world and having so little control of what others might bring about in our environment turns us into nervous wrecks. I salute your courage and hugging is indeed difficult and then again, being part of the human race, so is not hugging I hope you have a good day and the best of luck for July 4th!!! Lots of Cyber hugsxxxxxxxxx

 

[willow]

Somthing on the volatiles in pine
http://www.uga.edu/srel/ecoviews/ecoview090222.htm

 

[*GG*]

helsbells

1. Because doctors have not traditionally focused on a VIP deficiency causing adverse health reactions, not much thought has been given to how to raise VIP.
2. If more and more MCS people start reporting that they have low VIP, then hopefully some doctors will start focusing on this. Remember at the moment the medical establishment claims that there are no biomarkers for MCS.
3. VIP is not a perfect potential biomarker for MCS because there are folks who have low VIP who do not develop MCS (they're very, very lucky). However, I keep hearing about more and more people who have MCS who also have low VIP. I think that's something worth looking into.
4. I have no idea if the National Health Service in the UK will order a VIP test for you. But it's worth inquiring about. In the United States, it should be easy to get tested and insurance should cover (Labcorp test code #10397).

VIP is available at a pharmacy in MA. I was thinking of taking it, but my VIP is fine.

GG

 

[Marlène]

I suffer from MCS since 1993 I guess. My partner told me I was feeling sick and fainting once when passing a house where people were painting while on holiday. Total black out for me.

My VIP is under 15, the lowest reference range.

Gasoline, paint, perfume and food additives are the worst for me. A few years ago, the landscape 'changed' after putting gasoline in the car, as if I were in a movie. Very bizarre. Today, I don't touch gasoline, always gloves and if possible, let my partner get the job done.

My bedroom has "nude walls", no paint, no decoration, no light, nothing. It's my safe place.
Luckily I can still live in a house and meet people. So sad to read people's stories here.

 

[triffid113]

Wow! I thought I had it bad. There is no med on the face of the earth that I can take without side-effects in most cases worse tha the original problem. I cannot explain the side-effects other than swelling and dizziness, but recently someone observed I have no short term memory on medications. The word I simply use is "non-functional". I react extremely strongly to having to put flea meds on my pets (severe allodynia, extreme anxiety, depression, extreme irritability) and also to MSG (OMG I cannot unclench any muscle for 24 hours and I think it could cause heart attack!). I also react to off-gassing from new glasses (the coatings) and now that I get OTC readers istead of coated glass it works better. I never use anything with chemicals like dryer sheets and have always avoided chemicals so idk how much problem that would cause me. carpet off gassing and paint fumes - well I have never been where I could not avoid that - I never got new carpet for example. When my old carpet was kaput, I just got rid of it and now have bare floors. I don't like perfume but idk that it bothers me...it wuld make my mother cough but not me. i don;t think I am anywhere near as bad as y'all, but not being able to take any meds is a serious problem for me.

 

[domino444]

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.

Hi,

Can you tell me please what brand of lavender oil you used and what brand/product of diffuser you used?

How many drops of Lavender oil you used and how much water in the diffuser?

Does the Lavender oil neutralize the off gassing toxic chemicals?

The toxic laundry is coming through the wall from my neighbor, I want to try this method of yours to neutralize the toxic laundry smells.

Why did you choose lavender oil specifically? Is it the most effective in neutralizing off gassing toxic chemicals in the air?

Thank you

 

[max_yazhbin]

Not sure where you are located, but my daughter had severe MCS that was ameliorated by a process similar to (but not) homeopathy. The doctor injected small doses of substances intra-dermally, would wait to see if it provoked a response, then - if it did - would inject the same offending substance in more dilute concentrations until she found one that would shut off the response. Once the right dose was determined for each allergen, she would mix vials that would be taken sublingually.

Is that low dose innoculation? Isn't there a doctor in Texas that is know for that? I think his last name starts with a R? Would you post the name of the therapy and the people who are good sources on the topic?

 

[Judee]

Would you post the name of the therapy and the people who are good sources on the topic?

Max, I see that there was no answer to this question for you. I had an environmental medicine doctor who used a very similar process called Low Dose Antigen Immunotherapy.

Here's a description of what that is: https://www.watersbiomed.com/allergy--autoimmune-treatment.html

You can see if there is a practitioner near you who does this if you are still interested: https://www.aaemonline.org/find-a-practitioner/

I didn't keep going with the process but for some things like Candida, one of my doctors got the oral drops just right and it would turn off my symptoms within about 10 minutes after taking the dose though that never happened again after that particular bottle.

I don't think that means long-term treatment wouldn't have helped it's just that it wasn't helping my ME and at that point, that was my primary focus. Generally, doctors who use this like to retest and adjust the drops about every 6 weeks and I did not have the energy to drive the distance to get to the appointments to keep doing that.

Plus, most of it was also out of pocket so that was a consideration as well.