Anyone have MCS allergy 'no go' rooms ? could research be done on this ?

[Reading_Steiner]

I understand that this is a common problem, yes I react to mold it gives me a prickly sore throat etc, feel tired and drained after a while, sometimes I find it around window frames at other peoples houses ( black mould ), its annoying but not super bad. Theres a lot of mould underneath my bath at the moment and its hardly noticeable, its not enough to stop me going there for sure, so mixed results there.

Since having the illness I've found that my garage is no longer somewhere I should go, I hold my breath when I go in there until I've opened the big door. My worst period seemed to coincide with trying to exercise ( thanks NHS / PACE ) and spending time in the garage, burn like hard itchy places appeared on the sides of my fingers. I seemed to get more and more tired over the period of a couple of monthes until I got really very ill ( nightmare situation level ) but I can't say for sure it was MCS or exercise related, it was in the first year of being ill.

I became more sensitive in the last year, particularly to VOCs or synthetic chemicals in general. Chairs my dad bought ( cushions have some sort of foam in ), the carpet that was in my room ( ended up getting rid of it and swapping it over ) hardwood flooring that we got put down downstairs in place of the carpet i Iiked ( thought it would be fine because we have the same wood in the kitchen and hallway no problem ), nope, couldn't use the room anymore, it seems to be clearing up now though and I can just about use it.

The chemical I seem to be the most sensitive to is 'comfort ultimate care fushia passion', can't even be in the room if its in the washing machine, most other washing products don't seem to be much of an issue though.

Perhaps the biggest problem and example of a 'no go ' room I have found is my summer house, its a simple building about 2.5m by 2.5 m made of various wood, its not plasterboarded or anything like that, its simple. There are various paints and the rubbery material on the roof, possibly some damp or decayed wood but nothing major.
I could use it no problem in the first 3 years of being ill, up to about 2018, then something changed and I slowly started to become super sensitive to it, theres like an 'earthy' smell that maybe only I can smell ( I become hypersensitive ), it makes the air seem 'stuffy'. I thought it was just the old carpet I put down had gone mouldy because water came in the corners of the room when it rained ( sorted now ), so I removed that, but the issue persisted, tried sanding down the floors and walls where mould might have grown, varnished over it. Filled gaps in the walls with wood filler, varnished over. Whatever I do though i've had no luck trying to remove whatever it is i'm sensitive to, its mad.

What i've noticed though is that with some triggers, the effects go away as soon as I go back to fresh air, whereas others like my summer house, seem to have a lasting effect on the body, they cause crashes and symptoms I wouldn't usually have, I spent some time in the room or the doorway ( with big ventilation ! ) I felt disorientated hours after and I still feel a bit off today, plus my brain now feels 'lazy', if I try to read its like the same thing as 'in one ear out the other'.

If anyone has had a similar experience and eventually managed to find out what they were sensitive to please let me know, I want to try and fix my summer house but I have no clue, i'm thinking of using plastic sheets to seal parts off to try and get a clue where the problems coming from. Also since this is so reproducable it makes me wonder if the scientists could do some sort of study on these MCS effects, it could perhaps give a clue whats going on with the disease, maybe measure the metabolomic or MRNA expression changes, immune activation, brain inflammation or something.

 

[Irat]

I understand that this is a common problem, yes I react to mold it gives me a prickly sore throat etc, feel tired and drained after a while, sometimes I find it around window frames at other peoples houses ( black mould ), its annoying but not super bad. Theres a lot of mould underneath my bath at the moment and its hardly noticeable, its not enough to stop me going there for sure, so mixed results there.

Since having the illness I've found that my garage is no longer somewhere I should go, I hold my breath when I go in there until I've opened the big door. My worst period seemed to coincide with trying to exercise ( thanks NHS / PACE ) and spending time in the garage, burn like hard itchy places appeared on the sides of my fingers. I seemed to get more and more tired over the period of a couple of monthes until I got really very ill ( nightmare situation level ) but I can't say for sure it was MCS or exercise related, it was in the first year of being ill.

I became more sensitive in the last year, particularly to VOCs or synthetic chemicals in general. Chairs my dad bought ( cushions have some sort of foam in ), the carpet that was in my room ( ended up getting rid of it and swapping it over ) hardwood flooring that we got put down downstairs in place of the carpet i Iiked ( thought it would be fine because we have the same wood in the kitchen and hallway no problem ), nope, couldn't use the room anymore, it seems to be clearing up now though and I can just about use it.

The chemical I seem to be the most sensitive to is 'comfort ultimate care fushia passion', can't even be in the room if its in the washing machine, most other washing products don't seem to be much of an issue though.

Perhaps the biggest problem and example of a 'no go ' room I have found is my summer house, its a simple building about 2.5m by 2.5 m made of various wood, its not plasterboarded or anything like that, its simple. There are various paints and the rubbery material on the roof, possibly some damp or decayed wood but nothing major.
I could use it no problem in the first 3 years of being ill, up to about 2018, then something changed and I slowly started to become super sensitive to it, theres like an 'earthy' smell that maybe only I can smell ( I become hypersensitive ), it makes the air seem 'stuffy'. I thought it was just the old carpet I put down had gone mouldy because water came in the corners of the room when it rained ( sorted now ), so I removed that, but the issue persisted, tried sanding down the floors and walls where mould might have grown, varnished over it. Filled gaps in the walls with wood filler, varnished over. Whatever I do though i've had no luck trying to remove whatever it is i'm sensitive to, its mad.

What i've noticed though is that with some triggers, the effects go away as soon as I go back to fresh air, whereas others like my summer house, seem to have a lasting effect on the body, they cause crashes and symptoms I wouldn't usually have, I spent some time in the room or the doorway ( with big ventilation ! ) I felt disorientated hours after and I still feel a bit off today, plus my brain now feels 'lazy', if I try to read its like the same thing as 'in one ear out the other'.

If anyone has had a similar experience and eventually managed to find out what they were sensitive to please let me know, I want to try and fix my summer house but I have no clue, i'm thinking of using plastic sheets to seal parts off to try and get a clue where the problems coming from. Also since this is so reproducable it makes me wonder if the scientists could do some sort of study on these MCS effects, it could perhaps give a clue whats going on with the disease, maybe measure the metabolomic or MRNA expression changes, immune activation, brain inflammation or something.

I have severe MCS.my sensitivitie did spread over time to more and more things .thats normal with mcs,especially when you don t avoid your triggers.there are MCS Groups on Facebook and Planet Trive outside FB. Lots of infos there,also how you can renotave your House with mcs safe materials etc.

https://www.discovermagazine.com/th...-sensitivity-makes-sufferers-allergic-to-life

https://planetthrive.com/

https://enveurope.springeropen.com/articles/10.1186/s12302-021-00504-z

 

[Reading_Steiner]

Thats interesting ! " In the mid-1990s, she and her colleague Howard Mitzel surveyed 37 individuals who had become permanently ill after an exposure to organophosphate pesticides, and another 75 individuals who got ill after extensive remodeling in the home or office. "

So the people in the article, some of them don't have ME/CFS but they have MCS ? thats so strange, it makes me wonder then what is the relationship between the two diseases ? could it provide a clue ?

I believe I had a lot of exposure to silicone sealant ( like what you put around a bath or sometimes windows ). I injected tonnes of it into the gaps in my summer house in 2015, and had poor ventilation when the door was closed, I distinctly remember feeling ill and it struck me as strange because I was quite healthy at that time, I realized it was due to the VOC exposure. That year I also had weird problems with temperate ( feeling too hot ) and thirst, but I put these down to the anxiety disorder that I had for a few months of that year, so unfortunately the situation is complicated. I remember an odd experience where I felt sick or tired and couldn't walk far, I believe it was in that summer, before I got the ME/CFS. These could have been precursors perhaps, I was also cycling heavily ( overtraining ) immediately before I became ill, which began with a virus.

So its best to avoid MCS triggers ? do masks or air purifiers ever work ? if the issue was mainly mold then some masks would be able to filter it out right ? there are also masks that filter out various chemicals,
thats what I was using in my summer house and it did seem to help. Its amazing how sensitive I am to 'it' though and also how it has a longer lasting effect than most 'triggers'.

 

[Irat]

Thats interesting ! " In the mid-1990s, she and her colleague Howard Mitzel surveyed 37 individuals who had become permanently ill after an exposure to organophosphate pesticides, and another 75 individuals who got ill after extensive remodeling in the home or office. "

So the people in the article, some of them don't have ME/CFS but they have MCS ? thats so strange, it makes me wonder then what is the relationship between the two diseases ? could it provide a clue ?

I believe I had a lot of exposure to silicone sealant ( like what you put around a bath or sometimes windows ). I injected tonnes of it into the gaps in my summer house in 2015, and had poor ventilation when the door was closed, I distinctly remember feeling ill and it struck me as strange because I was quite healthy at that time, I realized it was due to the VOC exposure. That year I also had weird problems with temperate ( feeling too hot ) and thirst, but I put these down to the anxiety disorder that I had for a few months of that year, so unfortunately the situation is complicated. I remember an odd experience where I felt sick or tired and couldn't walk far, I believe it was in that summer, before I got the ME/CFS. These could have been precursors perhaps, I was also cycling heavily ( overtraining ) immediately before I became ill, which began with a virus.

So its best to avoid MCS triggers ? do masks or air purifiers ever work ? if the issue was mainly mold then some masks would be able to filter it out right ? there are also masks that filter out various chemicals,
thats what I was using in my summer house and it did seem to help. Its amazing how sensitive I am to 'it' though and also how it has a longer lasting effect than most 'triggers'.

There is too much about to explain everything,I would needm4 pages probably.yes people even wear a gas mask or a simple one with a filter like the Cambridge mask you can look up.and and yes also air purrifiers in homes.i don t tolerate them .

Some ppl with MCS have ME too and are bedbound and need to practice total avoidance ,some not.

You seem still mild to me what reactions concern,because if severe it can take months to recover from a trigger/reaction and you go downhill quickly.

A good summerise about the connection to ME/CFS ,biomarkers,treatments etc is the article
Dr, Martin Pall Multiple Chemical sensitivity towards the end of controversy. I can t copy the PDF for some reason,so just google it .If you have a specific questions you can ask me,but i recommend joining a group.take care

 

[Irat]

If you believe that your problem is mainly mold,you also can look up the shoemakers and Neil Nathans detox protocol. @Reading_Steiner

 

[Reading_Steiner]

I feel like I learned a lot already, I didn't know it was a separate illness. I wonder how it triggers and deepens our ME symptoms ? I looked and a lot of the symptoms are similar to what I thought of as ME symptoms, does that mean the only difference between the two illnesses is that exercise makes people worse in ME ?

Yes probably relatively mild compared to some of the stories I have read, I lived for 6 months in a different place last year and its knocked me down a lot in terms of health and increased all my sensitivities somewhat.

Also do people with Long Covid typically have MCS ? I couldn't find any information about that on google search.

 

[Irat]

I feel like I learned a lot already, I didn't know it was a separate illness. I wonder how it triggers and deepens our ME symptoms ? I looked and a lot of the symptoms are similar to what I thought of as ME symptoms, does that mean the only difference between the two illnesses is that exercise makes people worse in ME ?

Yes probably relatively mild compared to some of the stories I have read, I lived for 6 months in a different place last year and its knocked me down a lot in terms of health and increased all my sensitivities somewhat.

Also do people with Long Covid typically have MCS ? I couldn't find any information about that on google search.

No,long covid is not MCS ,but you can get MCS with long covid .

Me,MCS,Fibro,long covid,Gulf war syndrome are ingredients of the same soup I would say. These illnesses have multiple overlaps with each other and share many common symptoms and same mechanisms.