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Breakspeare London

Discussion in 'ME/CFS Doctors' started by brenda, Mar 8, 2012.

  1. brenda

    brenda Senior Member

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    I have heard today that my practise will fund me to go to Breakspeare :thumbsup:

    I wonder if anyone here can give me some tips before I go. Thanks
  2. SOC

    SOC Moderator and Senior Member

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    Brenda, could you translate this for us non-Brits? What is "my practice"? How do they fund you? What makes Breakspeare especially good to go to?

    The dots don't connect in my foggy mind which is accustomed to the way the American medical system works. Congratulations seem to be in order, though, so congratulations and good luck! :thumbsup: :balloons:
  3. justy

    justy Senior Member

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    Hi Brenda - wow! thats great news, hpow did you do that? i wish i could get funding for the breakspear, i particularly am interested in their testing for infections and co infections - i dont think its possible to get them done anyother way in the UK (at least not without immense hassle) So please do let us know how you mnaged to get them to fund you,
    All the best.
  4. garcia

    garcia Aristocrat Extraordinaire

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    Hi Brenda, do you know how much they will fund, e.g. in terms of testing / treatment etc?

    Many thanks!
    garcia.
  5. xrunner

    xrunner Senior Member

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    Not sure how to answer this. In general I'd say that it helps if (a) you have an idea of what you want to achieve rather than rely entirely on the drs (b) think about the important questions you want to ask as I find I can't really ask more than two or three questions during a consult (due to time constraints) (c) pick a doctor who is experienced in the area most relevant to you (e.g. environmental vs infectious), (d) make sure you focus the dr's attention on your key health issues, (e) don't be shy to explain what you can and can't afford with regard to tests and treatments (they can narrow down things for you).
    If you have specific questions I can try and answer.
  6. ixchelkali

    ixchelkali Senior Member

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    Here's a link for SOC and others (like me) who are unfamiliar with Breakspear http://www.breakspearmedical.com/files/chronic.html

    That sounds good. I didn't know there was anything like that in England. I didn't think it was allowed. (And I'm not being snide; I really thought they went after anyone prescribing anything outside of CBT & GET.) Has anyone here had experience with them?
  7. brenda

    brenda Senior Member

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    SOC

    Brenda, could you translate this for us non-Brits? What is "my practice"? How do they fund you? What makes Breakspeare especially good to go to?

    My practise means the people who make the financial decisions for the group of doctors at my medical centre and others in the area I think but not sure about that point. If you want anything which is outside of the National Health Service guidelines which as you know is free on the point of service, one of the doctors must make an application and give a good case for the funding.

    Getting funding for Breakspeare which is a private environmental medicine clinic and very expensive, is not easy to get.

    I had been disputing with my GP over my diagnosis which is ME/CFS, but I have had a blood test in Germany to show I have Lyme, but I dont think its the antibody assay as ab`s are not produced at the late stage. She sent me to a physician for a review of my "ME" and he said he could not find anything else and did not think it was Lyme and sent me to the local ME clinic where I saw an occupational therapist and she was on the ball and accepted I had Lyme as I showed her my blood test said that fatigue is not my worst symptom ( I think I had ME before I was bitten so the Lyme symptoms have overtaken the ME ones if indeed I have it).

    I pointed out to my GP that if she says I cannot have late stage Lyme (NHS deny it) and she says the blood test could be a false positive and wont accept the clinical diagnosis of Lyme that I was given either and so why therefore does she accept a clinical diagnosis of ME that does not fit the accepted guidelines and that I would therefore like to know what is wrong with me. I had been offered a referal to see a tropical disease doctor but I refused by saying he could only give me antibiotics which are useless at this stage and the blood test would anyway come back negative.

    I did get a referral to BS in the past - some 12 years ago but I was too sick to go. I dont know whether this swung it or not. Maybe if others can show they do not fit into the criteria their practise use they can argue for Breakspeare to find out what is really wrong.

    At the moment I dont know how much will be available - I will be asking tomorrow but I know I have to pay for transport and accomodation which at the Breakspeare guesthouse is 41 a night. You get transport to and from there.

    Thanks xrunner I will work out how much I am allowed and work around with the doctor. I know they do the organic acids and gut profile and I paid for them 2 years ago from Metamedix so hopefully they will do it again to see how things have developed.

    As before, the Lyme test will no doubt be negative so I dont know how they can help there but they do IV chelation and I have a major mercury problem. I wont want their allergy treatment as I had it done at Airdale Allergy Centre before they closed, again fromn referral but it made me worse.

    ixchelkali

    what you say applies to the NHS
  8. Jenny

    Jenny Senior Member

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  9. brenda

    brenda Senior Member

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    Thanks Jenny.

    I heard that the test you had done was one of the best. I wonder why you thought it was a false positive? I have read that you never get a false positive to Lyme and why do you think that abx were not helping? Many are sicker for ages on them before they improve or they have to have a different mix. That link was very helpful. I think I will skip Dr Julu.
  10. snowathlete

    snowathlete

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    I am close to going to the Breakspear as a private patient. I don't think I would have much luck with getting my GP to refer me for nhs funding, though of my blood tests for herpes infections etc come back positive, maybe they will be more likely...

    It's very expensive privately, though the testing etc is comparable to elsewhere in terms of cost and they apparently have a cheap pharmacy of their own (though how cheap really I don't know).

    My tip before you go is to do your research and know which treatments you think will be most helpful to you, and that way you are more likely to get what you want as apprised to letting them direct you.
  11. Jenny

    Jenny Senior Member

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    I was suspicious of it because everyone I knew on another board who had the test came out positive; they stopped offering the test shortly after I had it; the doctor I saw didn't know how to interpret it; I had years of different combinations of abx (including IV) without any improvement; after this the doc said I probably never had Lyme in the first place. Also, my symptoms seem rather different from those of a Lyme patient.

    I've given up with the Breakspear I'm afraid - they give you lots of tests, but often don't seem to know what the results mean. None of the many treatments I've had from them have helped.

    But they have got a couple of new doctors now - perhaps they are better.
  12. brenda

    brenda Senior Member

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    Hi Jenny

    Hmmm, my suspicious mind says that perhaps everyone has Lyme and they just dont want people to know so they shut down this lab.

    Who was treating you for Lyme?

    Lyme symptoms are so very like those of cfs and in fact it is called the `imposter` due to the different ways it manifests.

    I`m pretty much ok if all Breakspeare can do is give me tests - I can get them interpreted elsewhere and even by myself as I am studying biochemistry especially the methylation cycle as I believe it is the way forward. The only treatment I am interested in is chelation but I dont know if I will let them do it with my amalgams in place. I might get them done at the same times as I visit London.

    Brenda
  13. garcia

    garcia Aristocrat Extraordinaire

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    Brenda, do you know what agent the Breakspear use for chelation? Is it DMPS or EDTA?
    Many thanks!
  14. SOC

    SOC Moderator and Senior Member

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    Thanks brenda and ix! I guess, I couldn't wrap my mind around the idea that a medical practice would fund a patient to see a specialty clinic. The idea of my local profit-oriented mega medical practice funding anything for a patient is beyond laughable -- it's beyond comprehension. We have entirely different medical systems.

    Going to Breakspear looks like a wonderful opportunity for you, brenda. Congratulations! I hope they turn up some answers for you. :D
  15. brenda

    brenda Senior Member

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    garcia its EDTA

    Thanks SOC
    garcia likes this.
  16. Jenny

    Jenny Senior Member

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    Dr Terry Daymond was treating me for Lyme. He's left now. I think the number of people with ME who actually have Lyme is overestimated.

    When I was there they didn't offer any methylation cycle testing, but this may have changed.
  17. xrunner

    xrunner Senior Member

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    Dr TD was my Dr as well. Unfortunately he's retired now. I also had that dodgy test that was returning positives all over the place. Dr TD however based his diagnosis also on another serological test and clinical considerations.
    There's a recent good book about Lyme I've just finished reading "Treatment of chronic Lyme...Fifty-one case reports..." 2011 by Dr Weisbren. It's a collection of case histories and it appears that, with chronic Lyme, treatment failure is not that rare. That's a problem given that tests are not sensitive enough and the disease does not have specific symptoms.
    In addition, Lyme is not a disease caused by a single bug. It's usually a mix of pathogens some very difficult to eradicate requiring different approaches. The order of treatment can also make a difference. In my case, I started to move forward only after dealing with Bartonella and biofilm, now it's Borrelia I'm dealing with and possibly other unidentified pathogens.

    I had a methylation panel done by the ENL four years ago I think, so they've being offering that test for some time.
    Talking about mercury and amalgams. I did a DMSA challenge test last year. I was apprehensive about it as I had ten amalgams but the Dr said there was nothing to worry about as DMSA did not cross the blood brain barrier bla,bla bla... so it wouldn't mobilise mercury.
    So I did it and sure enough i did not suffer any particular side effects other than fatigue for a couple of days. However, I noticed that since doing that test my brain wasn't as sharp as usual and also other subtle changes. I'm only now getting back to my normal self with almost all my amalgams now been removed and after having a few Naet treatments as well.
    The experience with the test taught me a lesson and convinced me to go the Andy Cutler's way, rather than the Breakspear's chelation protocol. I'm sure there are people helped by it but we're all different and I wasn't going to take any chances to find that out.
  18. brenda

    brenda Senior Member

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    I have my appointment with Jean Munroe on 27th June at Breakspear sorry I spelled it wrong.

    They said they had another doctor who specialises in Lyme but she is not booking appointments at the moment as she is not in the UK. I dont know what to expect really as I dont want antibiotics nor DMSA. I t is the testing I am mainly interested in especially as they use Metametrix where I had organic acids and comprehensive bowel tests done 2 years ago and would really like a follow up. I intend to continue using frequency therapy for the Lyme but I want to do the methylation protocol and hope they are doing it there (must ring to find out) I also would like LLMD on hand for future problems. One small benefit is that it gives me some credence that I really am sick.

    I am getting a car paid for to take me there as well! Actually it is about time I got some help as I have suffered severe medical neglect since a doctor poisoned me at 5 months with teething powders containing mercury despite warnings long before the 1950`s

    Brenda
    garcia likes this.
  19. xrunner

    xrunner Senior Member

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    DMSA is not a problem in itself (unless you're sensitive to it), the issue is how to use it to minimise damage from mercury mobilisation.
    What Andy Cutler says about its use seems to make sense to me. But taking 20caps in one go for a challenge tests, I think it's risky.
    Of course if you can afford it, DMPS is a better alternative in my opinion but again how it's used is the issue.
  20. Butttterfly

    Butttterfly

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    Hi Brenda,
    Wow I am so thrilled for you! It feels like my only hope to have the NHS fund my treatment at Breakspeare. I literally discovered Breakspear a few days ago, I feel like it is my last chance saloon, I've tried so many other approaches. I spoke to my GP about it minutes before coming across your post. I was told I have M.E/CFS & Fibromyalgia 3 yrs ago, I believed at the time that I had Lymes. NHS did not offer tests claiming I had a personality disorder instead. Ofcourse I don't. A recent Biomeridien scan showed me as positive for Lymes. I have an appointment to discuss a way forward with my GP. She sounds like a robot and is not knowledgeable.

    My question is how did you get your practice to agree? What paperwork do you recommend I use? What argument do I present them with? What's your advice on approaching my request ofcourse including the standard request from the clinic after my first appointment. Any advice you have would be so appreciated. I live in Northwest London. I was wondering what area you are in as perhaps they are more knowledgeable. Or if you know of a knowledgeable and sympathetic doctor in London. Many many thanks and well done for getting positive results!
    justy likes this.

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