Hi,

We are desperate to find a doctor in the UK to help my daughter with her MCS and Allergies.

Judy

Hi Judy,

Sorry I missed you on chat this morning. I had to take my car to the garage and had just logged in for a minute to check on the site before I left.

It's truly awful what Samantha is having to deal with that the moment and I'm sure it is taking a big toll on you as well!

I feel very frustrated and useless as I don't really know what to suggest. You both know all the best doctors and clinics in the UK that I do. Sarah Myhill has always been a great help to me and I know Samantha has seen her, or been in contact with her. She also tells me she has spoken to a doctor at Breakspear but was wary of the advice to have immunotherapy that she was given. I don't blame her since in my experience things can go either way with that and she obviously can't afford to get any worse at this point.

In all honesty I think what she needs is to be admitted to a clinic with an environmentally-controlled unit (ECU) so that doctors can determine exactly which substances are triggering her various sreactions and symptoms. There used to be a clinic called The Airedale Allergy Centre (I think that was the name!) but they closed it down before I managed to get a referral myself. It was NHS funded and surprise, surprise, it was deemed a good target for cost cutting! Sadly I am unaware of any similar clinic currently operating in the UK. The most famous one is run by Dr. William Rea in the US - Environmental Health Center - Dallas

Samantha knows her stuff so I'm sure she has come across this place and Dr. Rea before. I know it would be expensive and difficult for Samantha to get there but I don't know where else to suggest. I have tried to find clinics in Europe before but it is difficult when the internet seach engines only bring up English-language sites, predominantly in the US and UK.

I'm sure you know this but the best way to find an environmental medicine doctor in the UK is through the British Society for Ecological Medicine website

Sorry I can't be of any more help than that. I am thinking of you both and hope you make it through this difficult period very soon.

Take care,

Maff

Hi Maff,

Thanks for your heartfelt message. You're right Samantha knows her stuff and has researched so much.

I wish that clinic in the UK was still open as I feel that is exactly what she needs at the moment. I didn't know about Dr William Rea so will look into him.

So hard not to be believed by the NHS and the GP being sympathetic, 'so sorry to here about this' but really having no advice.

Have appointments with NHS next week and week after. Also could contact Dr Myhill.

Judy

Hi Maff
Dr Rea's centre looks amazing. It would seem one problem apart from finance(!) is it isn't residential so we would have to find somewhere chemically safe to stay. I notice they seem to recommend Seagoville Ecology Housing but it is 30 miles away.

I guess as you have done making a home which is chemicallly free is really our best option. Once Samantha is a bit more stable we will have to look into this.

Judy

Hi Judy,

I just wanted to say I was in the same position as your daughter 2 and a half years ago. So extreme I could not live with anyone, moved house more times than can remember, slept in cars, couldn't leave the house and could only tolerate glass bottled water and a organic fresh food.
Understanding my triggers which was continued exposure to aldehydes and solvents at work had played havoc with my detox system and sent it into melt down. My detox system was overloaded but with the help of a great nutritionist I am back at work full time but it has taken time/money/trial and error.

As you will see from all the posts MCS is triggered my many different physiological onsets.So what works for one wont necessarily work for the next person. I am happy to pass on the name of my nutritionist who can put you in touch with someone near to you and allow her to disclose my case hostory if that helps.

As far as the NHS goes I had a diagnosis from the NHS toxicology unit at Guys last year but there was no help advice or treatment, all my results were within range but as they admit they have no total test for all enzyme activity in the detoxification system that is extremely complex. The only advice I got from them was not to embark on desensitization programmes or introvennous exchanges that are likely to prove more harmful, that some of these private hospitals can offer.

I would say I am about 80% better in dealing with the "normal" world, ie i can walk into Boots and not need carrying out! The initial triggers:- solvents aldehydes and respiratory irritants & nano particulates i am still sensitized to or have a big detoxification problem or underlying respiratory damage. . .I dont think I will ever know as small PPMs of these substances still disable me within minutes but thankfully my recovery time is minutes or hours rather than days and they are not abundent (or I make sure they are not) used around me in my everyday life.

I wish you both all the very best and a great credit to you to care for your daughter, ....there is an answer out there somewhere for your daughter.

Take Care and best regards

Sarah xx

Sarah

Hi Sarah
Thanks for your kind and encouraging reply. Please message me with your nutritionist details.

Interesting you managed to at least get some info from an NHS hospital. My daughter is in hospital at the moment under the care of the allergy dept at Wythenshawe Hospital, Manchester. They are to do more tests tomorrow but are likely to discharge her without any diagnosis. I can't fault their care and understanding of how she is feeling but they have been unable to get to the bottom of the problem.

Thanks again Judy.