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Breakspear Medical in the UK

Discussion in 'ME/CFS Doctors' started by Skyline, Apr 19, 2013.

  1. Jenny

    Jenny Senior Member

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    I've done almost every treatment they suggested over a period of about 4 years - lots of different long term abx, CO2 rebreathing mask, low-dose immunotherapy, 30 different supplements. None made any difference at all. I was told I had Lyme but then after 3 years of abx, told I never had it; I was told that I must have food intolerances or allergies as 'everyone with ME had them', and I had thousands of pounds worth of tests which no-one could properly interpret. Each time I went I had to wait between 30 and 90 minutes to see a doctor and they rarely apologised. (I was barely able to sit up at that time and had to ask for a bed to lie on while I was waiting.)
     
    Firestormm, peggy-sue and vli like this.
  2. TheChronicSituation

    TheChronicSituation

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    Thanks for the feedback about this everyone. I wasn't really intending to do LDI in the first place, but if I had any doubts I certainly won't be doing it now.
    I've had all my test results back at this stage, and have a new appointment with Dr Munro next week to see about treatment options. I will be posting on my blog again then with an update, if people are interested...
    http://thedamnchronicsituation.blogspot.ie/
     
  3. TheChronicSituation

    TheChronicSituation

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  4. maryb

    maryb iherb code TAK122

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    Or - you could buy yourself a far infrared sauna, get some liposomal vits to start with and order artesunate from the internet. See how you feel after doing those for a month.
     
    sianrecovery and peggy-sue like this.
  5. TheChronicSituation

    TheChronicSituation

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    Yeah, interesting, you're not the only person to suggest the far infra red sauna. Have you tried any of these options, Maryb, or anyone else out there tried them? I'm trying to decide whether these treatment options are for me and have a bit of a knowledge deficit.
     
  6. maryb

    maryb iherb code TAK122

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    I'm actually looking to buy one but don't know which - the sit in one or the blanket - I have a chronic back condition so not too good sitting but its only for a short time soooooo? My problem might be the energy needed to shower immediately - sometimes, make that a lot of times I don't have the enrgy to shower. I was thinking of starting a thread to see what others experiences were.
     
  7. EnduringAngel

    EnduringAngel

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    I use a blanket I don't get to use it often as don't have much space. But when I do it's great.
    I hope one day to move and get a bath as epson salt baths are awesome.

    A x
     
  8. TheChronicSituation

    TheChronicSituation

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    Valentijn likes this.
  9. brenda

    brenda Senior Member

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    I have now received the supplemental treatment regime from B/S and looking through the long list, there are quite a few items I cannot take.

    Their nutrient and b complexes have methylb12 and methylfolate in them and at present I cannot tolerate either due to my CBS mutations. They cause a huge increase in histamine and interstitial cystitis which I cannot bear. I am already taking folinic acid and hydroyb12 in small doses.

    Also the liver detox they want me to take contains milk thistle and I could not take that in the past.

    They don't have a b complex in without methyl donors apart from one from BioCare which has magnesium strearate.

    A number of PWME trying the methylation protocols also have trouble when taking methyl donors, so I am wondering whether B/S really do have enough experience to treat the highly sensitive and therefore worst sufferers.

    Their answer for sensitivities is to have the immune therapy but I am very cautious of that as I had it done before somewhere else and even though they say at B/S that they use a different method, I have already read of one person who says they relapsed with it.

    But anyway that will not help with my CBS mutations and the methyl donors.

    As I am being funded, I could ask if I could order the supps I need from somewhere else and have them refunded but I don't know whether they will do that as the pharmacist I spoke to said they like to work with supps they are familiar with. So, I don't know how it will go from here.

    I might have reached a dead end.
     
    Little Bluestem likes this.
  10. TheChronicSituation

    TheChronicSituation

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  11. maryb

    maryb iherb code TAK122

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    thanks for posting about your experiences - can you tell us what the anti/virals you were prescribed were and how long for?
     
  12. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    brenda, I am sorry to hear that you have hit a roadblock. I hope they will work with you to get you supplements that you can take.
     
  13. brenda

    brenda Senior Member

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    Thanks. I spoke to the pharmacy and nutritionist and was able to substitute some of the supplements for example. I ordered sunflower lethicin instead of egg and pea protein powder instead of whey protein. I had to cancel about half of the supps though as they contained either iron, folate, calcium carb, sulphur, ALA, milk thistle, chlorella, or mag. strearate. I don't think that I am unusual in not being able to, or desire to, take these substances.

    I was prescribed ribose and seem to be able tolerate it so far which is good for my heart but the pea protein from Lambards upset my stomach and then I decided that I would not like to take a non organic highly concentrated substance like that. Lambards who are supposed to be a good UK company were very unhelpful when I asked about how pescticids are removed or what was the allowed level so I ordered an organic one from somewhere else. My leg muscles seem to be coming back after introducing an extra source of protein which is not animal.

    Good so far but I don't know whether what I am taking will be enough to repair my mitochondria which is the aim of the treatment.
     
  14. denlander

    denlander

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    I am curious to know how what is the list of tests that they performed.
    I need a UK lab to perform HHV-6 virus study on my UK patients, was this test on their list?
    What it what is their treatment protocol?
    Regards
    Derek Enlander M.D.
    www.Enlander.com
     
    ukxmrv likes this.
  15. ukxmrv

    ukxmrv Senior Member

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    Dr Enlander, you could maybe consider this Lab who list 2 HHV6 tests. Dr Hyams used that lab when he was in London

    http://www.tdlpathology.com/test-information/a-z-test-list/h

    Human Herpes Virus - 6 (IgG/IgM) Ab
    Code Sample Reqs Turnaround
    HSV6 B 2 days

    Special instructions Referral lab
    Micropathology Ltd

    Human Herpes Virus - 6 by PCR
    Code Sample Reqs Turnaround
    HHV6 A 5 days

    Special instructions Referral lab
    Micropathology Ltd
     
  16. brenda

    brenda Senior Member

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    Dr Enlander this may answer your questions

    http://www.breakspearmedical.com/files/other_treatments.html
     
  17. maryb

    maryb iherb code TAK122

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    A friend had one done recently (April '13) they used Ummunosciences Lab Inc. LA
    I had one done a few years ago (2009) then it was The Doctor's Laboratory. London.

    I'm sure for a fee they would draw blood here for Dr Enlander's patients, process it and send it off.
    They run the clinic as a business after all, and Dr Monro would help I'm sure of it.
     
  18. TheChronicSituation

    TheChronicSituation

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  19. maryb

    maryb iherb code TAK122

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    TheChronicSituation
    thanks for the info - I couldn't tolerate either of these either. Any alternatives offered?
     
  20. froufox

    froufox Senior Member

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    Hi Brenda, what protein have you found helpful for your leg muscles? thanks :)
     

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