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ME doctor in UK

Discussion in 'ME/CFS Doctors' started by brenda, Nov 2, 2013.

  1. brenda

    brenda Senior Member

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    I decided to write the following to help newbies who don't have the money to travel abroad or to go private here.

    It is possible to obtain funding from the NHS to attend Breakspear Medical Group in Hemel Hempstead. I managed to do it by asking my GP to request funding for me and my PCT agreed and have been paying for testing and consultation and supplements.

    Breakspear are limited to what they offer, but even just for getting support for benefits is probably worth trying.

    I don't think that l have been branded as a psychosomatic case and claim to have been sick from mercury in a medication which was taken off the market, and don't know how much that has influenced things but just thought l would mention it. Good luck!
    peggy-sue likes this.
  2. ukxmrv

    ukxmrv Senior Member

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    Did you have to prepare a case to be reviewed by your PCT or anything like that or did your GP apply to them direct and make your case?
  3. brenda

    brenda Senior Member

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    I didn't have to prepare a case, my GP applied directly.
  4. carole Carrick

    carole Carrick

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    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 interest to many people.

    I think it's great tha\t your GP applied for you...how very caring of him. I'm glad you have a good one :)
  5. brenda

    brenda Senior Member

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    It is up to the GP now l believe, there are no PCT's as they were. I am in NE England. Many people are unhappy with BS and l have had nothing that helped. Actually my GP is not that good but l guess l put a good case that fatigue was not my worst symptom and l got a positive Lyme test from BS but that's due to my GP not accepting one l had done in Germany. I don't mind it on Facebook without my identity.
  6. carole Carrick

    carole Carrick

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    Thank you Brenda.

    Are you getting proper treatment for your Lyme now?
  7. brenda

    brenda Senior Member

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    No, l am concerned about taking antibiotics now. Dr M prescribed supplements to treat my mitochondria but l have been unable to take most of them.
  8. carole Carrick

    carole Carrick

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    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 to fight the Lyme etc itself.

    Have you heard of Low Dose Naltrexone Brenda? That can help level out the immune system. if you want to know more just say but you may already have looked into it.

    is it CoQ10 that Dr Myhill suggested? I get mine on prescription under the generic name ubidecarinone. It's not as good as ubiquinol or ubiquinone (CoQ10 which is already converted so no need for the body to synthesise) but I combinethe two so I take 100mg of one and 100mg of the other so it works out cheaper for me.

    Thanks for the info about Breakspear. At least you got the positive Lyme result out of them...that's something.

    Were they very ME friendly down there or are they the CBT/GET type? they didn't try to push any of that on to you did they?
  9. brenda

    brenda Senior Member

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    Hi Carole

    It's not Dr Myhill, and yes I take coq10 on prescription. I read that LDN is not good if you have Hashimotos. Breakspear is very ME friendly as it is an environmental illness clinic. Just many have paid a fortune and not improved much but some have been helped a lot. I felt disappointed that they did not understand how sensitive l am, nor do they understand much about methylation.. The doc also argued with me about iodine boosting thyroid antibodies so l had to send some studies from pub med. They are limited but better than nothing and better for those not too sensitive and sick maybe.
  10. carole Carrick

    carole Carrick

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    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.

    BTW LDN really helps me function better...it's not perfect and it can take some tweaking (I can still only take 0.6mg) but I'd rather be on it than off. I had a six month trial off to see and it was hell. So I think we're all different and sometimes it's worth trying even at much much lower dose. take care.x
    brenda likes this.
  11. carole Carrick

    carole Carrick

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    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.
  12. brenda

    brenda Senior Member

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    I will look again at LDN thanks. Yes my Coq10 is the right one. The problem with BS is its not up to date but you do get testing there which is very nice when it is free. I am having organic acids and bowel function done next. They want me to have low dose immune therapy but l am not happy with that. Where do you get your natraxone from?

    You too
    xx
  13. carole Carrick

    carole Carrick

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    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 made up to give to folks whenever the subject comes up. It's not comprehensive but it's a starting point to learn the basics:

    Low Dose Naltrexone


    1. Getting LDN can be helped by giving your GP this info pack produced by the LDN Research Trust as they often don't realise it can be had so cheaply and they try to wriggle out of prescribing due to the high costs other pharmacies/'specials' dispensing chemists charge.

    http://www.ldnresearchtrustfiles.co.uk/docs/LDN Information Pack(1).pdf


    2. Here's the link to Dixon's Chemist in Glasgow:

    http://www.dicksonchemist.co.uk/LowDoseNaltrexone/Default.aspx

    They work closely with the LDN Research Trust (UK based) and are also able to offer their LDN very cheaply to the NHS prescription service, I think it's £17.50 compared to the £100plus that some 'specials' compounding pharmacies do their version of LDN.

    Anyone can send them a NHS or private prescription and they will send out the LDN free of charge. I tend to get a three month script and Dixon's send it out fresh each month as it only has a shelf (fridge) life of 28 days due to it being made up fresh for each patient.


    3. The LDN Research Trust is run by Linda Elsgood who has MS. Her story can be read here:

    http://forum.ldnresearchtrust.org/index.php?/topic/1304-linda-elsegoods-story-2009/


    4. There are also a multitude of very informative videos by Doctors etc speaking at LDN conferences here in the UK

    http://www.youtube.com/playlist?list=PLF679FFFA6973840A


    5. Their main YouTube Channel

    http://www.youtube.com/user/TheLDNresearchtrust


    6. A really informative and friendly Facebook group for people with M.E. on LDN.

    https://www.facebook.com/groups/200010163370187/?


    7. A good note talking about what time of day to take LDN.

    https://www.facebook.com/groups/200010163370187/doc/551590841545449/


    8. LDN Research Trust videos on LDN and M.E.

    http://www.youtube.com/playlist?list=PL095BC60E53C83CA2


    *added for Brenda: a playlist on youtube from LDN Research Trust of Hashimotos and LDN.x

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