Re: [Lyme-aid] Re: KEVIN

[Guest guest]

Re: [Lyme-aid] Re: KEVIN

>Dear Sheila:

>

>This is uncanny. I was going to contact you separately about a LLD in the

>U.K. I met someone on a CFIDS list and had Doc Weiss look at his history --

>sure could be Lyme. You aren't referring to of Crumpsall? Let me

>know! If you are, this would be like (Valley talk) Twilight Zone! I was

so

>positive that Europe, particularly Germany, England, Poland and France KNEW

>about Lyme and were dealing with it. assured me that it was worse

than

>the Dark Ages, more the Prehistoric Era. How could there be so many

>uninformed people on earth at one time?

>

>Do you know of any LLDs in England?

>

>Sincerely,

>Annie

>

Hello Annie

See my email to posted today. This is not the twilight zone but modern

Britain. There are so called " knowledgeable doctors " at St ' Hospital

London, (that's south England), one somewhere in Wales (Central), North

Manchester Hospital (Crumpsall, North England) and one at Inverness Hospital

(Scotland)(Dr Darryl Ho Yen, who writes lots of books on ME/CFS). These

centres are all listed on the 'NHS Direct' government phone helpline. I

don't really feel that any of them are real experts in this disease, simply

because they don't really get the type of broad experience that someone like

Dr Burruscano would get in daily practice. My specialist, Mr Dunbar at

North Manchester (gloomy place) is kind and sensible and has agreed to

'consider' a trial of treatment if my tests are negative. This makes him

pretty OK in my eyes, but he says most cases come to him following holidays

in France etc and are usually new infections. Since I was erroneously

diagnosed with FMS and ME/CFS by a Rheumy some years ago, I have found that

the NHS in Britain is terribly slow to react to research and finds the

dissemination of theory and new practice information almost impossible,

with the result that our doctors seem light years behind other countries.

They are all too busy polishing their old boy network to take on board new

ideas.

I do hope keeps in touch. I know how much I have gained by talking to

everyone in lyme-aid who knows what I am experiencing. It is a lifeline and

I hope can grab it.

sheila