Surviving Multiple Chemical Sensitivity!
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Surviving Multiple Chemical Sensitivity!
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Monday, 13 June 2011
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Description
A group where those suffering from multiple chemical sensitivity (MCS) can support each other in liviing day-to-day with this extremely difficult and disabling condition.
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New computer installed - waaay faster! this is much better, download is almost immediate. Well the other one was about 7 y/o ... :s
>>many of the illnesses I decided to cover were connected>>
yup I've been coming to the same conclusion. I'll be taking some sideways steps to other parts of the site now that downloading is much faster. :o)
Many thanks for sharing this with us Jodie! While I no longer suffer from MCS I do like a good sunbath and am always in two minds about whether it is better to use sun cream or not (I am lucky enough to have skin that tans rather than burns). A homemade solution seems like a good compromise between UV protection and absorbing all the carcinogens and what not in commercial sun creams. Thanks again!
BTW Maff, do you happen to know which study this was... "One study found that 60-90% of MCS patients tested showed porphyrin abnormalities" (mentioned in your write-up on MCS intro page)?
Cheers!
Thanks Maff, I will print this off and bring it into my doctor's office.
Very helpful!
Hi Tommy,
Welcome to the group and many thanks for giving us our very own theme song! I for one think it's a very good fit. There are some lines in there that could be official MCS/EI awareness slogans like "Air can hurt you too"...and we've all come across our share of people who tell us "not to worry about the air".
Great band Talking Heads. It seems David Byrne may have had the gift of precognition as well as his musical talent judging by these lyrics!
Thanks again for posting Tommy and I hope we can help you out with any MCS questions you might have.
hi miriam, i live i new jersey and am experiencing my own debilitating problems with mcs. i've been to half a dozen doctors and have been on over 25 medications since april. i with i could find one doctor who could cover my breathng, throat and eye problems. i wish you luck. i was told when my "incident" first happened that i may feel like i'm loosing my mind, i couldn't appreciate that statement at the time but i do now. it's mentally and emotionally debilitating trying to find help. it's amazing that more doctors aren't researching this. i started with an ent, moved on to pulminologist, opthomologist, and my gp. i haven't been able to work yet the doctors are reluctant to sign their name on the dotted line. good luck and stay positive.
Hi Juniper,
You're welcome. I hope the masks help and also the DHEA. Just be careful with the DHEA, start with a very low dose and build up slowly would be my advice based on personal experience - being careful to note any side-effects. Despite being available OTC it is after all a steroid hormone and very powerful. Best to use under the supervision of a doctor/naturopath if at all possible!
What did your Genova testing show exactly? These tests usually show single nucleotide polymorphisms (SNPs) in specific genes and the abnormal variants usually mean the function of enzymes the genes code for is reduced rather than non-existent. Also there are a number of different genes involved in glutathione production, some specific to certain areas of the body e.g. liver, brain. I have had similar testing on a range of genes and also found problems with glutathione production and methylation cycle reactions i.e. folic acid and B12 metabolism.
Anyway, I am happy to hear the glutathione, folic acid and B12 supplementation is helping you :)
It is definitely a case of one step at a time with these illnesses we suffer from so any success can be a springboard to more. I hope you continue to find answers and my suggestions were of benefit. It would be a good idea to monitor any DHEA treatment with an Adrenal Stress Index (ASI) saliva test. I know the expense we incur is huge but this is a relatively inexpensive test.
Best wishes!
Wall
I have not been able to read all your posts, but I can share you my story and what finally put under control my MCS. I was fortunate (not really) to have had my reaction show through my voice and how I responded quickly to being around one hint of chemicals.
A doctor finally told me yeast/gluten was my problem. I went on a gluten free diet (not quite 100%) but after one month I have no problems being around chemicals like I used to.
I primarily avoid pasta and bread. My only weakness is my pizza. If I do eat a nice raised dough donut or any kind of pasta my throught yet again looses its voice.
I pray this may offer someone some help and relief.
A doctor finally told me yeast/gluten was my problem. I went on a gluten free diet (not quite 100%) but after one month I have no problems being around chemicals like I used to.
I primarily avoid pasta and bread. My only weakness is my pizza. If I do eat a nice raised dough donut or any kind of pasta my throught yet again looses its voice.
I pray this may offer someone some help and relief.
81 days ago
Maff,
Juniper - Could you please keep your posts on this subject in the 'Multiple Chemical Sensitivity (MCS) Recovery Stories' discussion where we had started this conversation. Sorry to be a pain but need to keep things organised so discussion threads can be followed by readers and posters alike. I'll be happy to talk about this more in that discussion. Thanks.
282 days ago
Mask and filters on order - I am definitely interested in hearing more of your opinion on the gene test. I am still working on unpacking and when I find the test I will share the info on it. I know when it came to a specific part on the glutathione it says "absent". I have been mystified about all my results on that test - as so - it seems that the clinic that did it wasn't clear about advising me (they were just sure that after seeing the results that they should not, and shouldn't have tried to chelate me) nor several other naturopaths. So I just keep trying to figure it out myself- not an easy task with all the brain challenges I've been in.
What do you or did you do with your glutathione challenges?
Where do I get an ASI test? I haven't noticed anything from the DHEA so far that I'm aware of. What should I look for? I am getting it from the health supplement store. Is it as beneficial as the DHEA from a pharmacy?
We're still working on eliminating the sources of fragrances, laundry soaps and whatever else the previous owners used in our new home. My goodness, I hope this can be over soon.
I just want to move out into the country with no neighbours!.....
Take care :)
What do you or did you do with your glutathione challenges?
Where do I get an ASI test? I haven't noticed anything from the DHEA so far that I'm aware of. What should I look for? I am getting it from the health supplement store. Is it as beneficial as the DHEA from a pharmacy?
We're still working on eliminating the sources of fragrances, laundry soaps and whatever else the previous owners used in our new home. My goodness, I hope this can be over soon.
I just want to move out into the country with no neighbours!.....
Take care :)
282 days ago
Maff,
nontoxic4u - That's a fantastic idea! Would you please create a discussion topic above for this and we can start sharing what has worked for us. I overcame severe MCS a number of years ago and we've had a good number of members reporting cures using a variety of treatments/methods.
314 days ago
Doctors have charged me 30 000 dollars over the years and some things work. Perhps we should list all the things that helped us in the hope that some of them apply to others who cannot get to an mcs doctor or cannot afford them. In usa this is the case. With uk public health in would not be so difficult but lets hear what your doctors have suggested.
316 days ago




