Discussions from Surviving Multiple Chemical Sensitivity!
Wow, great find Jodie! Exactly what we need...the protection of non-absorbable microfine titanium dioxide in a base of almond oil with water and vitamin E being the only other ingredients. No nasties at all - I'm going to order a bottle and look forward to testing it out! I like the light-hearted but informative nature of the sales blurb from the company too :)
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.
I really wonder who funded this research by Wessely and colleagues. Ridiculous! Who wants social isolation, fear, pain, lost career, lost love relationships, grrrrr. He obviously didn't do much of a study. I went to a restaurant yesterday for the first time since 2006 and ordered some food. Only hard boiled eggs and a pot of camomile tea (still have food intolerances) but I was out with friends and others who didn't know me. No mask, no panic, no reaction to perfumes and the automatic fly spray. If Wessely etc., could have monitored my feelings of joy, and for the matter any person who is recovery from MCS, they would know it was the exact opposite.
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 ;)
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.
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).
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.
For me nose filters are definitely not suitable. They may stop the seering pain through the nose but for me the mouth has to be covered as well.
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.
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.
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!
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