Surviving Multiple Chemical Sensitivity!
Discussions from Surviving Multiple Chemical Sensitivity!
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Do carbon/charcoal filter masks help your MCS?
I used charcoal mask from the hardware store a few different kinds and then graduated to a half mask respirator p100 mixed filter. That seemed to work but I could not find new filters and can't buy the upgrade to the gas protector filters where I bought the mask they don't have any in stock tried to buy the upgraded gas filters online but they won't sell them.. guess they are only for firemen and terrorists... bet they can find them. This one failed me when needing to take a cab filled with febreze... the driver showed me the can he opened all the windows and I put my head out but it was too late I am still trying to recover. I have bought two 3m respirators filters easy to get... P100 NIOSH filter... bit leary now of how well it will actually work.... What can stop febreze? Anything?
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Cures for MCS
I have been cured of MCS - it is not what many would expect. https://www.youtube.com/watch?v=hwTVd-Kle7I
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MCS Questions and Recovery Stories
Thanks for the encouragement, Maff! I do have an "I Can Breathe" mask that I use in crowded situations. I had the "Protection Plus Nasal Filters" for a year while I was still trudging around the office. Do you think if we wear a mask around public places as much as possible, it might help recovery time? Did you have to get toxicity testing routinely while you recovered? For myself, the worst part is feeling intoxicated, anxious, irritable and untreatable headaches. In the interest of focusing and moving forward, I'm going to look for some counselling, and medical treatment for my digestion issues. I can't help but wonder which came first, but possibly: Food allergy->Candidiasis->New job and MCS. Candidiasis recurs every few months so is the most draining on my energies. I'll check out the links and other posts shared, it's all very encouraging! Cheers, Robyn_WC88
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How to beat Formaldehyde?
Good that you find a way of more controlling the products you are using. Good luck with your battle Dawndy! Maff, i have looked at my blood results from a few months ago and i have noticed that my Molybdenum is very low. After reading your article it makes more sense to me know! (www.ei-resource.org/articles/candida-and-gut-dysbiosis-articles/the-candida-aldehyde-detox-pathway-and-the-molybdenum-connection/) I will start supplementing molybdenum along with Pantethine to break down the toxic waste products of the candida.
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Chem Trails in the UK
Interesting document Jodie! It seems the UK government is very keen to discuss the issues raised they relate to Climate Change but dismiss entirely all of the specific questions regarding chemtrails and potential environmental and health consequences thereof. A typical response I suspect!
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Any success with brain retraining?
October last year my TSH was 4.3. As of today it is 3.8 !!!!!! Yah. Success. So yes, for me the Gupta programme is reducing the stress in my body. I sweat now, which I didn't before and my gut operates normally. Sensitivity and symptoms are still getting less and less. Obviously my body is in healing mode.
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Martin Pall Response to Baseless Wessely "MCS Sufferers are Hermits" Paper
I am with CazNZ in asking who indeed has paid for this so called information-study-paper? He who pays the piper calls the tune, something we are all too sadly aware of. Speaking personally, I find this a great worry as it was not that long ago that early papers written by Simon Wessley discrediting CFS/ME and Gulf War Syndrome as being a personality disorder rather than having an organic cause had been put into archives far away from the public gaze. Hardly surprising as diagnostic procedures have advanced considerably and proved him WRONG. Has he learned nothing, or is he being paid so much he simply could not turn it down? The mind boggles. Sir Simon is clearly unwell.
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Jobs for people with MCS??
Oh and Jodie, yes the discussion Caz referred to is directly below this one in the list of discussions at the link you posted (group homepage) on my computer. I have no idea why it would not be the same on yours! Hopefully something else that will clear up with updated site software ;)
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Which treatments might help MCS?
I'm eliminating coffee, tea and sugars etc because it is recommended when taking the Pall supplements and doing the Gupta Program. I'm hitting this "nasty" cycle from both ends. Like Maff I don't think there is a "magic" pill. When I last posted I thought the "firing" pain had stopped. In fact, it can still come but it takes a lot longer for my body to respond. Nevertheless, I can now "stick" my nose right onto something that I have a severe reaction to, get the full-blown reaction and then manage the reaction. Within 10 minutes 60% gone and after 30 minutes at least 85% of the reaction can be managed with the Gupta exercises. I am still wearing my mask when out and about though because it takes a lot of effort and time on my own to stop my body responding. The best thing to eliminate is not necessarily in the diet but in the head . . . negative thoughts and feelings that make everything even worse. We should all eat well (with minimal chemicals), be kind, accepting and loving to ourselves and realise we are on a journey.
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My Mothers Story
You just need to find the right doctor. All the doctors who have treated your mum would have thought of MCS (or the denial of it as an illness) at least once. They know it exists. But it takes a brave man/woman to stand up against popular opinion and speak the truth; however, these doctors who believe us do exist. For me, it's been a doctor of environmental medicine and an immunologist specialist who have been helpful in diagnosis and suggestions - yet it is the information that I get from the community of MCS, EI, and chemically sensitive people that has helped me the most. I recovered almost completely once, but did not appreciate it, and ended up sicker than before. This time when I recover, I'll hold onto it like gold! I wish you and your mum luck and good health. I'm a student and I blog about living like this at http://the-labyrinth.com Also, I think you should look for some hospital guidelines that are for chemically sensitive patients. In Australia we have five states (3 of these now have guidelines for patients, so that is a positive).
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Purchasing a Sauna
Hi Jim. Yes I am looking into getting an infared sauna. I have narrowed it down to two. Heavenly Heat and Clearlight. Have you investigated these two. Totally different technology. Low to no emfs and quality cabinets. Heavenly Heat make to order and charge $500 US to ship. They offer a 10% discount also. I have had a reply from the Clearlight in the States but having problems communicating with the Australian branch. What brands are you investigating.
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Things That have Worked for MCS
Hi Maff. Still no doctor (not through lack of trying), but the Pall supplements have arrived from iHerbs. . . only took five days to reach me here in NZ. On day four already and no problems. Which of course is great (I have lots of supplements purchased previously which I have not been able to take). The interesting thing is that because I have all this positive input around me, e.g. ~85% getting better. My anxiety/fear levels have definitely dropped. I've also come across EFT which I've found works for me better than paracetamol. I've decided to do the brain training eventually also.
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Heroes..
Great to hear the removal of your amalgams made such a positive difference Jodie. I am lucky enough not to have any fillings myself but I am always concerned when others embark on having them removed and/or doing chelation therapy. I feel it could go either way unless working with a doctor who REALLY knows what they're doing. Sounds like you have a great GP, as I do. Great that they were able to work with a sympathetic haematologist to get you a test run with a general anaesthetic. Persuading private insurance to pay for it must be bordering on a miracle! ;-) I also now have a great GP after years of being dismissed by them. He listens to all my theories, usually agress, and does everything he can to find ways within the NHS to get tests done and have things prescribed. He even prescribed the VSL#3 probiotic for me until the local PCT decided it is not available in my area.
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Porphyria link - references?
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!
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Great fact sheet for MCSers to give to the disbelievers
Thanks Maff, I will print this off and bring it into my doctor's office. Very helpful!
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Theme song for MCS sufferers
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.
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Living with MCS in Connecticut/New York?
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.
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Multiple Chemical Sensitivity (MCS) recovery stories
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!
