Overdue update - and referal
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Its been a while since my last entry. I had nothing to report except various chemical exposures before christmas which wiped out 9 days of my life and another four pounds off my already pathetic 7st 10lb frame. I think I qualify as size zero Uk size 6. I eat 3 meals a day when I am not ill (on those days I dont not even get out of bed) have been known to tuck into a whole bag of kettle chips! . I am just wiped out by chemicals in everything I cant afford organic everything so am at risk at every meal from potential toxic injury. I am free of dairy and gluten to free my body of further toxic overload and cant tolerate any food additives or preservatives.
Well my Christmas money has been invested in supplements which I started taking 3 weeks ago. I am supposed to take 2 L Glutathione complex tablets and 300mg of magnesium citrate a day. I am up to 150mg of magnesium citrate a day and had to reduce the L-Glutathione complex to one as they gave me mild pain in my kidney (anyone familair with this side effect?). Increase again in 3 weeks. This according the the doctor at Acumen may reduce my sensitivities.
I cant say I have noticed any changes but that not surprising 2-4 months is an indicator (that maybe longer due to reduced doseage)
I am not sure if this is relevant but I spent 48 hours without MCS symptoms and that was when I completely detoxed cold turkey from all dairy. Yes I have had a cold and yes the sensitivites are dampended but the reactions still continued. Strange I know, and on that basis I am convinced there is a personal cure out there somewhere.
Most importantly I have won my battle for referal to Guys Toxicology Unit. This has been a 12 month battle which has been personally and economically exhaustive. Getting this far has meant for me and my estranged partner journeys of over 1000 miles and hundreds of pounds to get this far. I am relieved that they are taking my case seriously (surely thay cant say I its phsychosamatic aswell as the majority of other unhelpful members of the medical fraternity).
All I would say is persevere with your PCT, my symptoms were brought about in the work place. Ask to see occupational respiratory consultant go to everyone you can and yes I know this is extremely difficult the lengths I have to go to are extreme and costly and made me extremely sick. Write to your local MP tell him how things are for you, and keep telling him.
Take all offers of help from your friends and family and I have learnt not to be shy, without them I would probably be dead. I used to hate asking for help but I do whenever I cant cope for myself.
The next challenge is how to get to London and survive! A double honeycomb mask minimum me thinks, a chemically free driver ( I know I will not be well enough to drive following any hospital exposure) who can take the time off work and be in the waiting room for me to lessen exposure to alcohol hand gel and the perfumes of other patients and staff. If I am really lucky I might be able to get the consultant to interview me outside. I could at least try.Its not easy and hopefully I can find a willing volunteer out of my shortlist of two.
Its not easy keeping our chins up and remain positive, as my OU tutor said to me recently. . .are you bullet proof??? I am not sure what she meant, but I have taken it as a positive though. The funny thing is I could probably survive a bullet under the right circumstances. I wouldn't last 30 seconds in a Lenor factory!
Best Wishes
Sarah
Comments
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Saturday, 30 January 2010
Hi Lisa and thanks for the info
I know these have helped many other sufferers I have spoken to, but I couldnt tolerate it. I still have it somewhere?!!! if anyone is in desperate need let me know and ill try and find it and happy to post it on. If it might releive symptoms for someone else then brilliant.
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Sunday, 31 January 2010
Hi Sarah,
Good to see you back on the site and great news that you have got your referral to Guys Toxicology Unit. I hope they can help you out or at least do some testing to prove you are physically ill!
Great advice to persevere with PCTs as well....those who shout loudest and all that. My GP is excellent and if it was up to him he'd let me try treatments considered experimental. He prescribed VSL#3 probiotic for me (which costs £75 per month easily) until the PCT stepped in and prevented him writing any more prescriptions for it!
As you suggest it's often about "personal" cures with MCS. Casein, a protein in dairy foods, is well known to interact with the brain and act like an opioid (e.g. morphine, heroin etc). Since MCS is generally seen as a primarily neurological condition it's not as unlikely as it might seem at first that there is a connection.
Good luck at Guy's! -
Monday, 01 February 2010
Thanks Maff,
Ever hopeful of a positive outcome! Hows the studying going?
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Monday, 01 February 2010
You will get there Sarah. Great that you are so positive! I have been free from reactions for over 5 years now
The studying is really intense and taking a lot out of me but my grades are holding up well so far and not long to go...I graduate with my degree this summer. Then next year I have to do 10 supervised real-life case studies i.e. seeing clients/patients as a nutritional therapist. I'm sure all the effort will pay off in the end! -
Tuesday, 02 February 2010
Good luck this year it must be really hard, congratulations for getting this far, the ups and downs are difficult to contend with.
My nutritionist (private) is a godsend even though I can only eat organic meat fish veg and a few grains and pulses under her regime! She knows what she is doing. We are both on this journey and if we can break the cycle of MCS it will personally satisfying for both of us. You will get a lot of satisfaction from this work no doubt and be really worth it.
Although recovery from MCS is not achieveable by diet alone but it helps, and she has access to the supplements advised privately that my NHS doctors say " oh you can pick these up in Holland and Barrett for a couple of quid" GPs baloney baloney.
Show me a Hypo Allergenic L- Glutathione complex or Glutamine food supplement with aloe vera and licquorice for a couple of quid and I'll show them a flying pig.
Another sideways dig at the medical fraternity! You are so lucky with your doctor. . .it is rare indeed.
Hopefully in the future the NHS will pick up on the need for nutrion therapy as a preventative activity or cure in a lot of illnesses and recognition of food intolerances which are definately on the increase.
Will definately be worth while.
Speak soon
Sarah
Hi Sarah
Check out www.needs.com as I bought a tiny black ionizer from there that you wear around your neck and it helped ALOT during my 6 hour flight to Hawaii. I actually never felt so good after a flight! Bring extra batteries for the way home! You may want to wear the thing in cars, too, etc.