The Dove clinic & Breakspear hospital UK

Discussion in 'Fibromyalgia Main Forum' started by rebeccavw, Nov 8, 2005.

  1. rebeccavw

    rebeccavw New Member

    Hi

    Has anyone been to the Dove Clinic or Breakspear hospital in UK for CFS treatment ? I am considering going to one of these and would be interested to have some feedback from anyone who has been.

    Tansy - do you know anyone who has tried either ?
    Thanks
    Rebecca
  2. KelB

    KelB New Member

    Sorry I can't answer your question, but I'd be interested in replies.

    Having had a quick trawl on the Internet, I see there's a Dove Clinic at Winchester, which is within travelling distance for me (at a push).
  3. tansy

    tansy New Member

    Hi Rebecca

    I saw Julian Kenyon in the 80s, he was considered to be one of the leading lights in complementary medicine, but to be honest I made more progress when I changed over to seeing one of his colleagues. He recognises the roles of toxins and infections including candida in ME and CFS.

    The Breakspear hosptial is good for allergies and toxins that's why the Countess of Mar supports their work. They recognise and treat lyme disease too; though there have been criticisms form the UK borreliosis/lyme community over how long Tx are given. I am not sure how well they understand the significance of chronic and late stage lyme and chronic borreliosis. For anyone with severe allergies, or a serious toxicity issue, the BH has more to offer than most who claim to treat them in the UK.

    The Dove Clinic and Breakspear Hospital have had Tx successes and failures, Tx outcomes depend on what factors are invovled in each case and whether these centres treat them.

    Both can be expensive. Before consulting anyone outside the NHS, or paying for Tx, I look at what they have to offer and their takes on these DDs before making any decisions.

    love, Tansy


  4. rebeccavw

    rebeccavw New Member

    Hi Tansy

    I have had the Breakspear info sent through. I dont really feel I have an allergy problem not sure about the toxins. The way this illness makes me feel is like I have very bad glandular fever, swollen glands, sore throat, all over aches, fatigue obviously. Dont have any other symptoms really apart from insomnia so its def immune problem. Breakspear sent me through a form with list of symptoms and I didnt really have any apart from the fatigue on these !

    So not sure now - I really want to go and see someone to get some in depth tests of my immune system. Just want to go to the best place.

    Any more advice ?
    rebecca x
  5. rebeccavw

    rebeccavw New Member

  6. tansy

    tansy New Member

    Hi Rebecca.

    It is difficult to get these tests done in the UK, most are carried out as part of research projects. The NHS tests for infections are only the basic tests; once infections go stealth it requires more sensitive testing and interpretation of test results.

    The current policy here in the UK means doctors are being persuaded we do not need in depth investigations, so that makes accessing them through the NHS even more problematic now.

    You may be able to get your CD4 and CD8 ratios tested but I suspect that needs to be done through a hospital dept, PCTs have different policies on what blood tests GPs can order through the NHS. Drs Kerr’s and Gow’s research picked up genetic markers for this so maybe you could try showing your GP these and asking for them. A GP can check your fibrinogen levels, mine have been high throughout my illness, despite my medical history the high fibrinogen was ignored due to my low platelet count, but learned how important this info was for me.

    Since 1983 I have had tests that showed immunological changes etc. My test results were considered significant by the good doctors I saw and ignored by the others, however they have consistently suggested an immune system that can go into overdrive, high or low specific WBC (but different ones in the early years), and chronic smouldering infections. Local haematologists arranged many of these tests through the NHS due to some abnormalities their initial tests picked up. Others were ordered through a doctor I saw privately but that was some years ago, he has since retired.

    When I accessed my medical records I found even more abnormalities had been found through various tests, but I had not been told about them. Discovering them has helped in my Tx choices even though some were carried out in the 80s and early 90s. Others have found similar information by accessing their medical records.

    Fatigue can be the result of raised cytokine levels; so immune modulators may help. Also if you have been taking samento the die off will make all the symptoms you describe worse for a while; this is why detoxing is very important along with anything that can increase lymph flow and drainage.

    Ken Lassesen makes suggestions for immune modulation, reducing inflammation, coagulation etc in his For What It’s Worth (FWIW) protocol. Dr Myhill has her theories on the fatigue, if the fatigue is due to problems with ATP, you can request the test devised by Dr John Howard, through her office.

    Since the Dx of ME and CFS are now made through exclusion, with minimal investigations, it has created a patient population with a variety of health issues that include chronic fatigue. I now understand many of the issues that made and kept me so ill and disabled. The fatigue is one symptom that has improved so I am sustaining higher levels of activities on my good days; but my exercise intolerance, especially in my muscles, remains.

    I hope someone can come up with the name of a doctor who will order the tests you want. You could try ringing the offices of those who treat PWME and CFS privately to see if they include tests on the immue system as part of their investigations.

    Love, Tansy
  7. rebeccavw

    rebeccavw New Member

    Hi Tansy

    Thanks for reply - I think we are on all the same CFS internet sites ! :) I am having the ATP test done next week. But after having had this illness for 7 years and trying everything under the sun I still cant seem to find anything that will get rid of the horrible flu like symptoms which is why I wanted to get some more tests done. Thought I could target supplements better if I had more of an idea about whats going on in my body. I know we all have different symptoms with CFS along with the obvious fatigue.

    I got Breakspears info in post and they do have some specific immune tests but have had quite a lot of negative feedback from patients who have been. So dont know whether to go or not !

    I have had a break from the samento but will continue with this soon.

    Rebecca x