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Breakspear medical clinic (UK)

Discussion in 'ME/CFS Doctors' started by Vitalic, Aug 31, 2011.

  1. Vitalic

    Vitalic Senior Member

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    http://www.breakspearmedical.com/

    Has anyone had any experience with this clinic? I'm desperately trying to find someone in the UK that knows what they are doing and is up to scratch with the latest evidence (having exhausted all official NHS options). I've tried getting in contact with Sarah Myhill but their clinic is snowed under so it's virtually impossible to get an appointment. At first glance this place seems to be fairly on the ball but would be good if anyone could give a personal testimonial or just an evaluation based on their approach.
     
  2. Jenny

    Jenny Senior Member

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  3. Vitalic

    Vitalic Senior Member

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    Thanks, I did see your post saying you were a patient and to ask for more details. I presume the fact you have been a patient for that long means you haven't found anyone better in the UK at least? All I'm looking for is someone with the expertise to interpret the tests carried out by RED labs (redlabs.be) or perhaps carry the tests out themselves if they have the facilities, it sounds like they do their own testing from what I can see. Do you think your Lyme diagnosis was a false positive?
     
  4. Jenny

    Jenny Senior Member

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    I guess I haven't found anyone else Vitalic, though I'd go back to an acupuncturist I had 25 years ago if he was still around. Unfortunately he's gone to live in the US.

    I don't know if they would interpret the Redlabs test, but they do carry out their own testing and use overseas labs - very expensive and I'm not convinced of the validity of some of it.

    I'm suspicious of the Lyme diagnosis as they stopped using the test I had (Panel C from Neurosciences) soon after I had my results and even IV abx didn't help at all. And the doc changed his mind several times when the abx weren't helping - 'you do have Lyme, babesia etc, and just need IV treatment' to, after 2 years 'the Lyme must have been destroyed' to, after 3 years 'you may not ever have had Lyme'.

    The autonomic function testing was the most revealing test I had, but it's cost over 1000 with follow ups.

    Jenny
     
  5. Vitalic

    Vitalic Senior Member

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    Thanks for your input. Sounds like it might be worth a shot at least, I'm interested in getting the mitochondrial profile / immune dysregulation tests done because so far the standard tests / viral serology tests have failed to detect any infections or abnormalities, therefore I am basically flying blind at this point in terms of what direction to take with treatment.

    My symptoms conform to the international consensus criteria almost 100% but it seems whatever is wrong with me is rather difficult to detect :confused:
     
  6. olliec

    olliec

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    I spent a great deal of money at the Breakspear, and after about 18months I abandoned treatment. Each visit I was told what we needed to do next, and it was presented as the thing that would improve my health, but each time it failed, and after the bill hit five-figures and they had no understanding of why I was frustrated, I had to walk away. My sense is patients are put through a production line and they generally use the same treatments on every body. By the time you've done the allergy testing & treatment, the ATP testing & supplements, the viral testing and anti-virals, the heavy metals testing and chelation, the IVs, you can spend an inordinate amount of money and find nothing worked. The staff are friendly and very professional though Dr Peter Julu was so rude to me on one occasion I received a written apology from the MD of the hospital.

    I'd say to anyone considering the Breakspear to assume it'll cost 10-20k, and it may deliver no results. I think it is a mistake to place a bet on them you cannot afford to lose. For me, it was a very expensive bad experience.
     
  7. aprilk1869

    aprilk1869 Senior Member

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    Vitalic, have you tried LDN? I low that this clinic is listed as being familiar with this treatment. If you haven't tried LDN you might want to see if your own GP can get it prescribed for you. It only costs 17 a month I think. My mum should hopefully be going on it soon.
     
  8. vli

    vli

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    ollie, I have to say I think the report of your experience is invaluable. I've kept tabs on this clinic over the years and I wouldn't say they're particularly "up to scratch with the latest evidence" and I personally wouldn't go there myself. But that's just me.
     
  9. Vitalic

    Vitalic Senior Member

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    That does sound like a harsh and expensive experience, I guess that risk is inherent in any treatment/intervention for this illness. I'm wondering if just using them for the initial testing phase might still be worthwhile if there aren't many better options available in the UK, we are considering getting in touch with Klimas as a last resort but would rather stick to Europe to begin with if possible.

    I have heard of LDN but am not that well read up on it, will definitely keep it in mind depending on what the tests show up if anything.

    I was only basing that on what I read on the website, the fact they are at least approaching it from a biomolecular angle means they are by definition more up to scratch than pretty much any other clinic in the UK, I don't have enough experience to compare with other clinics in europe/USA but willing to listen to suggestions/alternatives.
     
  10. xrunner

    xrunner Senior Member

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    I've been a patient there for three years. I would not have recovered without their help but I admit that there have been times when the therapy I was given either did not work or made me worse, negatively worse. There were times when I got furious with the place.
    However, all in all I'd say it's probably the place in the UK where one has the best chances of getting some improvement but there's no guarantee. You have to do your homework and can't rely just on the drs to fix you. You have to take charge of your health, get to know as much as possible, read around about other people experiences and see what works and what doesn't, read the small studies etc. That allows you to ask the right questions.
    Over the years, I tried most treatments talked about on this forum (methylation, Myhill/mitochondrial protocol, various detox stuff, diets, name a supplement and I most likely tried it) yet, most did not work for me, whilst some made me worse.

    Not sure what that reference to the "latest evidence" means...there have been studies going back at least 10 years pointing to the possible causes of immune dysfunction and I have not seen any major scientific breakthrough recently...

    Regarding the costs, it's rubbish to state, as someone did, that you're going to spend thousands. My costs have been of around 500-600 pa. but my gp has been helpful in terms of prescribing certain tests (general blood tests) and antibiotics that can be had under the NHS. The drs there are quite open and flexible to define a treatment to take account of personal financial circumstances.
    The issue is that there isn't a rule book that tells doctors how to best treat us. It's going to be a bit by trial and error until one finds what works for him/her.

    Good luck.
     
  11. justy

    justy Senior Member

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    Hi Vitalic, just to let you know if you didnt allready that you can still order tests through Dr Myhill without being a patient of hers. You can have the mito test done and she will then send a very comprehensive report with recommendations to you and your GP. I did this and found it very useful and have since then been able to get in to see her. I have made some good improvements, (although not "cured") i havent spent loads of money either. You can order lots of other tests from her in this way, she also has a free e book outlining her research and approach.

    If you want to stay in Europe then have you considered Kenny De Merlier? I have to say if i could afford it i would also love to go and see Nancy Klimas, but my budget is limiterd to a few hundred pounds here and there.
    Good luck with it all! Justy.
     
  12. Mog

    Mog

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    Can anyone tell me anything about the Autonomic Monitoring and Quantitative Inotropic Fatigability Test (QIFT) undertaken by Dr Peter Julu at Breakspear please? It is expensive. Just wondered how valuable it is in diagnosis and for deciding on treatment. Or is it more for academic interest? Thanks.
     
  13. Jenny

    Jenny Senior Member

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    I've replied to your pm about this Mog.
     
  14. bertiedog

    bertiedog Senior Member

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    I would also be very interested to hear of any experiences people have with this test.

    I had the basic Autonomic testing done 2 weeks ago showing raised CO2 and low oxygen for which I now have an oxygen concentrator which is working great. It was recommended that I go back after 6 weeks of using the oxygen and have the full test with Dr Julu but it would cost another £750 and not sure it would be worth it because I know I have dysautonomia but didn't realise the full extent of the problem. Not sure if I can get rid of the Herpes type viruses I have in my blood there is any chance of this improving, it seems to be a life long problem. I also have a permanent problem with a mold in my gut but the way I see it is that I have been low on oxygen in my cells for over 12 years and in that case nothing is going to function properly including the immune system.

    I also have to say I was given loads of supplements from Dr Munro but I have been unable to tolerate any of them. I think it is because I have been taking supplements for methylation since 2007 my brain and body is quite well balanced and doesn't like it when extra stuff is thrown at me because I don't need things at high doses. All the supplements made my brain hyper and wired and gave me insomnia and aggression it was horrible. I am feeling much better now that I haven't taken any for 2 days, I feel more like me.
    Pam
     
  15. brenda

    brenda Senior Member

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    Hi I`m following this thread with interest seeing as I have a first appointment with Dr Munro next month courtesy of the NHS. I wll be reporting what I think afterwards.
     
  16. Glynis Steele

    Glynis Steele Senior Member

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    Newcastle upon Tyne UK
    Hi Brenda,

    Good luck with your app at the Breakspear, hope it goes well. I have put a linky below regarding a test for CFS patients. Not sure if you are interested in this kind of investigation, but if you are, please arrange for a late afternoon test as d-lactate is at it's lowest level in the morning and builds up after each carb containing meal. You need to scroll down a little way into the Newsletter.

    http://www.breakspearmedical.com/files/documents/Issue24Spring2010web_000.pdf

    The link below is for a follow up study on the Sheedy paper where higher than normal amounts of d-lactic acid producing bacteria were found in the stool's of CFS patients. It might be worthwhile taking a copy of this for Dr Munro to look at.

    http://sacfs.asn.au/download/Lactic acid study 2008 - Ethics Application.pdf
     
  17. brenda

    brenda Senior Member

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    Glynis

    Many thanks I will take it to Dr M. My lactobacillus in my CSA is 3.8 (>1.2) D-lactate in OUA is 0.5 ( <7.0)
     
  18. xrunner

    xrunner Senior Member

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    I had that test three years ago. They also recommended some kind of bottle of oxygen/CO2 mix etc. It was expensive and did not convince me so I did nothing about it (and glad I didn't).
    I don't think the oxygen concentrator is for your herpes virus...I've seen others on anti-virals iv for that.
    The test is not helpful. It focuses on symptoms and not on causes of disease. I found it a waste of money (thankfully covered by my health insurer at the time)
    Like yourself, I also used to take a bunch of supps which didn't help. Again, I found that focusing of symptoms and secondary effects didn't help as much as tackling the causes of disease (not through the BS).
    all the best
     
  19. bertiedog

    bertiedog Senior Member

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    I think you missed the point I was making. The oxygen has made a massive difference to my severe dysautonomia I have obviously been short in oxygen for probably over 12 years. I can do so much more and feel and look so much better so much so I am going to order my own machine. With severe POTS I don't believe its possible to reverse it especially at my age of 64 so I am more than happy to use oxygen as needed.

    I am also going to follow up on the yeast/mold issues I have but I can order tests for that myself through Genova. Depending on the results if it comes out I am actually allergic to the mold then I might consider immunotherapy for it but that is as far as I would go.

    I am also taking Immunovir which I get from the Breakspear so again I am very thankful for that because my GP would not prescribe it. All in all I am looking for answers but with POTS its a slightly different story.
     
  20. Mog

    Mog

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    Can I ask how you managed to get it on the NHS? That would be good!

    I had the autonomic testing done but don't know what the results mean.
    "The baseline autonomic index test shows frequent abnormal spontaneous brainstem activations (ASBAs). The cardiac vagal tone and CSB are also on the lower levels."
    Can anyone interpret that for me please? I was told that the brainstem activations were caused by viral infection. What is CSB?
     

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