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Comment last edited on about 8 years ago by Maff Maff...If addressing Th1/Th2 balance has helped you in the past you might want to look into low-dose naltrexone (LDN) with your doctor. It's not expensive and many people report success with it. Of course you might not be able to tolerate it but it's another option to think about.
When I got housing I had been on benefits for a few years due to my illness and I applied for council housing and explained in full what my sensitivities meant in terms of what I required. A housing officer came to visit me and saw that I had to wear a mask in his presence, asked me questions about my condition...and I was put to the top of the waiting list! I was given a housing association flat within 2 months. It was a standard flat but has a private entrance so no need to worry about communcal entrance, stairs etc. I painted it with Ecos solvent-free paints and furnished it with all second-hand furniture and was ok without my mask except in the kitchen and bathroom. Showering with a mask on is an experience but at least I could relax properly in the living room and bedroom!
It's good to hear the I Can Breathe mask is helping you
Thanks for your kind comments about the website. If I can help people who are suffering like I have (and still am in many ways) then I'll give it my best shot!
Good luck with everything and hope to see you around,
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Comment last edited on about 8 years ago by Maff Maff
Hi Samantha,
Sorry to hear you have now developed MCS along with your already debilitating conditions. We do sound very similar as I developed MCS around the same age as you are now after already having had ME/CFS, adrenal fatigue (not as severe as insufficiency), and gut dysbiosis/Candida for years. I wouldn't wish our situation on anyone. Not even if I had worst enemies (I don't!).
Both published medical studies and anecdotal reports suggest MCS is common with both ME/CFS and adrenal problems. As you will know, the adrenal glands through the hormones they produce, provide us with the ability to deal with stress. We usually think of this "stress" as purely psychological but in fact the stress can also be biological (i.e. infections) or chemical (i.e. exposure to high levels of toxins) as well. This means that if we have poorly functioning adrenal glands our bodies are less able to shrug off these stresses and we eventually develop sensitivities. The exact mechanisms behind the sensitivities are not yet fully explained so trying to do so is educated guessing at best. However some research has shown neurological hypersensitivity in MCS patients and some has shown immunological hypersensitivity (e.g. increased mast cell activity - mast cells release histamine during allergic reactions) - so MCS is not necessarily the result of one or the other, it could be a result of both. The nervous and immune systems are constantly interacting and use many of the same chemical messengers. If one is not working correctly then neither is the other, simple as that. There is a new speciality in medicine studying how the nervous, immune and endocrine systems all work together called psychoneuroimmunology - you fancy some light reading
Your symtpoms sound exactly like mine, down to the bloog sugar imbalance after exposures. As you have noticed the symptoms are very similar to those of adrenal insufficiency and my explanation for this is as above - the body has lost the ability to maintain homeostasis (balance) in the face of chemical insults and we therefore experience symptoms resulting from the body's inability to keep blood sugar stable, cells supplied with sufficient oxygen etc.
Having said all this you won't be too surprised to hear that I overcame my MCS through a combination of strictly avoiding exposures (as you are already doing ) - and focusing treatment on adrenal issues. I can't prove anything obviously, but I feel strongly that DHEA supplements were key to my recovery. I don't want to bore you with long explanations as you seem pretty clued up but basically DHEA is an adrenal hormone which works with cortisol to help the body cope with stress of all kinds and maintain homeostasis. Interestingly it also increases the activity of GABA - the brain's major calming/inhibitory neurotransmitter. I can only guess that it therefore reduces sensitivity to chemicals in MCS. Dr. Pamela Reed Gibson did a surver of around 800 MCS patients and DHEA supplements scored highly for effectiveness so I guess I am not rhe only one it has helped. I have to say that you should definitely not start taking this without talking to your doctor but you know that right
Oh yes - Candida can in my opinion and experience be a huge source of toxins that might contribute to the development of chemical sensitivities. It produces alcohols, aldehydes, and other organic chemicals as part of its basic metabolism and it is chemicals like these that seem to cause MCS and trigger symptoms. Yeasts/fungi like Candida are just waiting for an opportunity to increase their numbers and the immune impairment due to ME/CFS and adrenal insufficiency would provide such an opportunity. If you have a gut full of this stuff constantly spewing out toxic chemicals that you absorb into your body then the results are not going to be good are they...Like 0 -
I can remember hating the smell of the chemicals my mother used in her art studio and still do, eg oil paint and turps. Also I hated the smell in cars as a child and used to get car sickness. Over the years I have had bad reactions to working in a new building (all the new paint, glue, chemical odours).I also dislike the smell of anything strong in the air like gas, petrol fumes, strong perfumes,fly spray, varnish, pest sprays, nail polish and remover, cleaning products etc. I also get sinisitus from wood fires (bushfires) and wood barbques. I can't go into new fabric shops. My physical reactions are firstly, an aversion to the smell, nausea, headache and an exacerbation of my fibro symptoms. I manage it by avoiding these things as much as possible or by modifying the effect and being careful about what I use around the house. G
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Symptoms and Progression of Multiple Chemical Sensitivity
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This week I thought I'd try to get all you multiple chemical sensitivity (MCS) sufferers involved and conduct a kind of survey so we can see the most common symptoms of the condition and how it develops in different people. I hope this is an idea that interests you and you'll get involved by leaving comments below.
First of all I'd like to discuss my personal feeling on what MCS actually is. There has been a lot of confusion among both doctors and patients about whether MCS is an allergic condition or a neurological condition. My personal feeling through experience of the illness and reveiwing the available scientific literature is that it is most definitely a neurological disease caused by neurotoxicity (toxic damage to the brain).
A leading theory which I believe to be along the right lines involves a process called 'limbic sensitization'. The idea is that either acute or chronic exposure to volatile organic chemicals (VOCs) makes the nerve cells in the limbic system of the brain hypersensitive so that in the future even minute amounts of these chemicals cause the nerve cells to fire and result in the symptoms characteristic of MCS. The limbic system is an old part of the brain intimately linked with mood, emotion and the stress response (fight-or-flight) which explains why many MCS patients experience mood disturbances and often a degree of panic following an exposure. More on this can be found in the book 'Chemical Exposures: Low Levels and High Stakes' by Nicholas Ashford and Claudia Miller - both well known MCS and toxic injury researchers.
It is certainly possible that people may be allergic to certain chemicals but this is not MCS. Lourdes Salvador of MCS America has written an excellent article entitled 'Chemical Allergy Biomarkers' which describes the differences between 'chemical allergy' and MCS.
In my own journey I had a cytotoxic ("cell-toxic") tests carried out which measures the response of lymphocytes (important immune cells) when exposed to specific chemicals thought to trigger MCS such as formaldehyde, diesel exhaust, domestic gas etc. Interestingly my results came back highly positive across the board - yet at that time I was not suffering from MCS, having no acute reaction when exposed to these substances. The interesting thing is that I later went on to develop MCS a few years later. So although the cytotoxic test does not correlate with the symptoms of MCS perhaps it can be an early marker of a problem that may develop into MCS in the near future.
Anyway, onto the main point of this blog entry - comparing MCS symptoms and illness progression. I will start us off by listing the main symptoms I experienced with MCS and how it started for me. I hope you will join me and share your experience too!
Main Symptoms
Initially:
- Dizziness
- Light-headedness
- Confusion
- Brain-fog
- Memory-loss
-Weakness
- Rapid/Pounding Heartbeat
- Restlessness/Hyperactivity
- Mood Disturbance
Symptoms arising an hour or so later and often lasting for days:
- Headache
- All Over Muscle Aches
- Fatigue
- Depression/Anxiety
- Flu-like Illness
As you can see these are all sysmptoms that would suggest a central neurological basis. I know many of you also experience symptoms such as breathing difficulties and these could also be caused neurologically or you may have concurrent asthma or other respiratory condition that is exacerbated by the chemicals. Lourdes Salvador's article discusess these issues.
Progression of my MCS
My MCS started in late 2002 after I had had a general anaesthetic - ironically to insert a catheter at an alternative medicine hospital in Mexico. When I got back home to the UK I first noticed a reaction to perfume, nail varnish and cigarette smoke. I was still living with my parents at the time and they were understandably unwilling to completely change their lifestyle for something they didn't understand. I noticed over a period of weeks and months that it was taking smaller and smaller amounts of these chemicals to trigger the symptoms described above and that these were becoming more severe.
I remember taking my dog for a walk in a forest area out in the countryside where I thought I would be safe but even walking past other people wearing perfume/deodorant triggered my symptoms.
As time passed I rapidly became sensitive to a large range of products particulaly fragranced household products such as soaps, shampoos, laundry detergents and cleaning products, but also to vehicle exhausts and the gas stove.
After 6 months it became unbearable as I was constantly reacting to everything and these reactions were accumulating in terms of symptoms severity. At this point I had to move out and live on my own where I could rid my immediate environment of all triggers.
This was the beginning of my recovery which I have talked about before across this weebsite and will continue to do so in future posts.
So, if my experiences resonate with you then please let us know. If you have experienced different symptoms and illness progression then it would also be great to hear from you so we can get a picture of how MCS develops and manifests in different people.
I look forward to reading your comments. Best of health to all!
