• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. carole Carrick

    ME doctor in UK

    Oh good At our practice the PCT only allows ubidecarenone. Oh that's really great that you get the tests at BS...I am definately going to ask my GP. :) I get my LDN on NHS prescription via Dixon's Chemist in Glasgow. They deliver free all across the UK. I made up a little 'fact sheet' I...
  2. carole Carrick

    ME doctor in UK

    ps not to bug you... but check that your coq10 you get on prescription is ubiquinol as many label ubidecarenone as coq10 but it's not as good...I know as mine is the latter hence I have to combine.
  3. carole Carrick

    ME doctor in UK

    Isn't it madness that an environmental illness clinic can't understand about sensitivity...and that we have to present articles and studies to our doctors to get them to understand or listen...it's all backwards. Good Luck to you Brenda I really do hope you find something that works for you...
  4. carole Carrick

    ME doctor in UK

    Oh that must be frustrating. I know I have a lot of difficulty with supplements and can react badly to certain ones. I can completely understand why you want to avoid antibiotics. I remember hearing Dr Mikovits on a talk show mention that it's best to try and boost the immune system to allow it...
  5. carole Carrick

    ME doctor in UK

    Thank you Brenda. Are you getting proper treatment for your Lyme now?
  6. carole Carrick

    ME doctor in UK

    Brenda that is really wonderful...good luck to you and I hope you can get something good out of it. I've read good stuff about Breakspear. May I ask...which PCT you are with and also is it ok if I share this conversation on my facebook profile? I'd link back to here. I think this would be of...
  7. carole Carrick

    Newcastle, UK: Drs Spickett/Newton - any experiences?

    dr newton is a practising clinician as well as a researcher...she sees patients with POTS/OI at the RVI. I know a few who have been referred to her from their GPs and from outside the Newcastle area too. :) She specialises in Primary Biliary Cirrhosis but has branched into the ME/cfs field...
  8. carole Carrick

    Newcastle, UK: Drs Spickett/Newton - any experiences?

    Hi Sasha...thank you for replying so quickly. My original appointment was back in December last year but I was simply too unwell to travel back then and had to defer...the earliest appointment they could give me was July so I can see by that they must be pushed for places. I know their clinic is...
  9. carole Carrick

    Newcastle, UK: Drs Spickett/Newton - any experiences?

    Hi Everyone...I am due to go see Dr Spickett in a week or so after having been referred by GP. I've had ME 14/15 years and was initially diagnosed up In Edinburgh. My GP wondered if they might have some help for me so I go there at the beginning of July. Like you Sasha I am conflicted and...