Message for TANSY

Discussion in 'Fibromyalgia Main Forum' started by goingslowlycrazy, May 10, 2003.

  1. goingslowlycrazy

    goingslowlycrazy New Member

    Hi Tansy,
    I read in one of your replies to someone that although you have found a good GP (thank goodness) you are having trouble finding a specialist in the UK.

    I have just joined the ME Association (4 Top Angel, Buckingham)...they have a website with a printable application form.

    They hold a list of UK specialists which WE have no access to...but if we become a member (£15 a year) our GP's can request the list.

    I think it's disgraceful that we have to join to get this info - but I spent a whole evening on the net once, looking for specialists and there were none in my area, that I could find. There seem to be loads in the North East and if you are from there, you should have little problem.

    Just wondered if that would help you any....

    My email is if I can be of any further help.

    Mary x
  2. tansy

    tansy New Member

    My GP did try to refer me on the NHS to Profs Anthony Pinching and Leslie Findlay but the referrals were turned down. Very long waiting lists and no funding contract.

    She's concerned about any long distances I might have to travel, even thought those were too far, not just because of the fatigue etc but because of the problems I have with my spine.

    Used to help run Action for ME who make most of their information leaflets available, though they do charge for them. Most of their leaflets are available to non members. I think that's acceptable because I know how tight money is and how much needs to be raised.

    I used to belong to the ME Association too but got so frustrated at their pussy footing around in order not to offend or add to the disbelief by publishing uncoventional therapies and some research.

    I know some problems I'm trying to get addressed now are not pure ME, so I needed to see someone who understood the condition and could see beyond it.

    Locally there's no hospital doctor in the right field who takes ME seriously enough. Also things went very badly wrong when I spent three months there as an inpatient, and that was after an invasive procedure went wrong (seems to be the story of my life). This has effectively blocked access to many things, even though physiotherapists and specialist clinics keep expressing their concerns and asking me what certain tests, x rays show - they've never been done.

    So now I will have to rely on my GP who is pretty good, she even believes in candida, gut dysbiosis etc. She feels frustrated because all this is making her job harder too.

    I do "have a cunning plan" but need to discuss this with my brother whose a doc (nuclear medicine), once I've done a bit more research. He spends up to half his working time overseas and has a very busy life so if I do some background searching first it will make his side of it easier.

    Cheers, and thanks for your e-mail address.

    [This Message was Edited on 05/10/2003]
  3. goingslowlycrazy

    goingslowlycrazy New Member

    but glad that you have a good GP - that's a great help.
    Mine is lovely too and has offered to get me anything that I would like to try...which is very sweet of him, but most of what I want to try ISN'T prescription..more herbal or homeopathic.
    He also doesn't think I have a candida problem and there we disagree. He says if people have true systemic candida they are sick to the point of being on a ventilator...

    Well, I did that 'spit into a glass of water' test that was on an article posted by Jelly - and it said if the saliva floats, you are ok - if it has tails hanging down or it sinks, you have candida. Mine sank totally to the bottom within 15 minutes and you are supposed to check it every fifteen minutes for an hour!

    Also, I have faithfully been following the Atkins diet and not lost a pound (apart from the first week when I lost six) and Atkins says one reason for not losing weight can be a systemic candida problem. So I am going to get some acidophilis tablets and see what happens.

    Good luck with your 'cunning plan' - sounds intriguing!

    Mary x
  4. tansy

    tansy New Member

    A haemotologist I saw last year said the same thing about candida, I actually got him to tell me which anti fungals he thought were best. Funny that - he virtually contradicted himself; however, for the rest of the time it was he scoring points.

    My GP prescribes Amphotericin B tabs + pastilles for throat and mouth. On a three month course then a few diflucan after that and we'll see how long I can keep it a bay this time.

    Probiotics can really help, if you get flatulence or some diarrhea at the start you know you need them.

    Yes it's been really frustrating for me, I get very angry. I know just how those suffering from Gulf War Syndrome feel, you know there's so much dishonesty and cover ups and it's damm hard to get round all that.

    I have been working out how to move things forward. It's going to take a lot of mental effort which always fries my brain. Now I'm slowly putting a dossier together and trying to fathom out how to get access to those parts of my hospital records (3 different ones) that haven't gone missing without raising their suspicions.

    Anything that works and is relevant to other board users will be posted but it's going to take some time.

    The Atkins diet works for lots of people. My son is on that and he finds it helps his GI tract symptoms AND he loses a good amount of weight too.


    [This Message was Edited on 05/10/2003]