1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

where can i get these tests done privately in the UK?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by snowathlete, Nov 1, 2011.

  1. snowathlete

    snowathlete

    Messages:
    1,990
    Likes:
    1,960
    UK
    I have seen my GP and asked for tests and she is looking into it, but i expect the answer to come back negative, so then my next step will be to have the tests done privately.
    The question is, where can i get tests like these done?

    Specifically, Im focused on wanting tests for EBV, CMV, and HHV6 as well as the co-infections that lerner and montoya test for. Anyone done this in the UK, and where can I get them done?

    Thanks
    Joel
  2. Athene

    Athene Never give up

    Messages:
    1,130
    Likes:
    147
    Italy
    If you make an appointment with any private GP they will be able to refer you for these tests.
    Private ones always give you printout of everything if you ask for them, which you should do.

    One of the best places in the UK at testing everything that could cause or accompany CFS is the Breakspear hospital
    http://www.breakspearmedical.com/
    (I didn't go there myself but know many people who have).
  3. justy

    justy Senior Member

    Messages:
    2,324
    Likes:
    1,921
    U.K
    Hi Joel, i would like to know the answer to taht myself so i also hope someone will post. I have been seeing Dr Myhill and she doesnt offer these tests on her website but i might send her an e mail to ask if its possible, im particularly interested in EBV as i had glandular fever really severely as a teenager and also HHV6 as it seems a big player.
  4. snowathlete

    snowathlete

    Messages:
    1,990
    Likes:
    1,960
    UK
    i'd like to cut out the private GP if possible, as he would just be a middleman in this case. I know what tests i want and how to interpret them. So, i just need the tests and the results only. Hoping to keep the cost down as much as possible.

    Justy - i also had glandular fever as a teen, very badly. Im sure mine had some link to my ME/CFS. I am hoping to get antivirals against any herpes viruses i have, if i dont have the co-infections that lerner and montoya say stop it working properly.

    For me, ive been reading about this and that research and trials and treatments etc, and this looks by far the most promising. So im keen to give it a proper go.
  5. sianrecovery

    sianrecovery Senior Member

    Messages:
    695
    Likes:
    399
    Manchester UK
    I am in exactly the same place - of wanting to further explore the viral side of ME - I am also seeing Sarah Myhill, who I really respect, I know mito's are her big thing, but I'm going to ask her too - before I do the Breakspear thing. I phoned them about testing for viral stuff and Lyme two months ago, and they woman I spoke to said their initial testing package came to about 1,800. I will post again if I find out more.

    Good luck
  6. xrunner

    xrunner Senior Member

    Messages:
    529
    Likes:
    185
    You can't do that. Any lab anywhere is going to ask you for a formal request by a doctor.
    I did those tests and others years ago through a US lab in New Jersey (recommended by Dr Nicholson). But my GP had to request the tests he filled in and faxed the lab form), then I had to go to a lab in central London who had a licence to draw and ship blood to the US (otherwise the sample won't pass through customs) and then interpreting the tests wasn't that straightforward because the lab in question used a different scale from the one I had read in studies.
    It's much easier, as someone advised, going through a place like the Breakspear which I subsequently did.
    If I were you I'd add, to those tests, tests also for Lyme (via IgeneX) including Bartonella, as its symptoms are viral-like.

    Having said that bear in mind that none of such tests are that reliable, in my opinion.

    Good luck!


    PS: these are the labs used by Dr Lerner

    Viral testing for EBV, HCMV, HHV6:
    EBV serum IgM viral capsid antibodies (VCA) - Diasorin, Inc., Stillwater, MN
    EBV early antigen diffuse (EA) - Diasorin, Inc., Stillwater, MN
    ELISA HCMV(V) IgG and IgM serum antibodies to viral capsid, strain 169 HCMV - Diasorin, Inc., Stillwater, MN
    HHV6 IgM and IgG serum - Lab Corp, Dublin, OH

    Co-infection testing:
    ELISA and Western blot to Borrelia burgdorferi (IgM and IgG) - Lab Corp, Dublin, OH
    IgM and IgG of Babesia microti - Lab Corp, Dublin, OH
    IgM and IgG of Anaplasma phagocytophila - Lab Corp, Dublin, OH
    IgM and IgG of Mycoplasma pneumoniae - Lab Corp, Dublin, OH
    Anti-streptolysin O (ASO) titer <400 units - Lab Corp, Dublin, OH
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    6,903
    Likes:
    4,004
    australia (brisbane)
  8. aprilk1869

    aprilk1869 Senior Member

    Messages:
    294
    Likes:
    57
    Scotland, UK
    You might want to try http://www.medichecks.com but they look quite expensive to me. I mean their test for EBV is 305.30. Although they do interpretations so maybe it's not too expensive.
  9. snowathlete

    snowathlete

    Messages:
    1,990
    Likes:
    1,960
    UK
    Really, thats a pain. Why cant i get the tests if i want them. why do i need a GP to okay it. It doesnt make sense, because i need to go private because my Gp wont agree that its worth doing. my GP seems to take the view that i have a diagnosis and its incurable, so thats the end of it.
  10. sianrecovery

    sianrecovery Senior Member

    Messages:
    695
    Likes:
    399
    Manchester UK
    Hi xruuner - did having those tests done make a significant clinical difference to how you managed your illness? What did you think of the Breakspear?
  11. xrunner

    xrunner Senior Member

    Messages:
    529
    Likes:
    185
    Hi Sian,

    The Breakspear? I believe it's the only place in the UK, unfortunately, where one has a chance to get better though it's not guaranteed.
    They have a bias for certain treatments, eg. low-dose immunotherapy and IV interventions which have a certain financial return for them but which may not be that effective for all patients. However, if you're proactive enough you can get a treatment tailored to your needs, including financial ones, which is important to me as I don't have a lot of money to throw.
    I guess that applies wherever you go. If you have clear ideas about what works for you and doesn't, what may be relevant for you and what not, read around and done a bit of homework, you have a much better chance to get better. Otherwise, if you rely entirely on the doctors to fix you, chances are much lower unless you're lucky, in my opinion.

    I don't think tests are that important in order to get better. In my case they have been helpful in convincing me and justifying from a medical perspective the treatment.
    I have found that most tests are not reliable and it's much more important the ability of the doctor (and myself) to understand what may be clinically important for myself in terms of treatment intervention.
    The assumptions that we make about what me be wrong with us are by far more important. Every single assumption we make opens the possibility to a certain treatment and closes others.
    I'll give you a personal example. I had always been of the opinion that the body can heal itself and that it can be helped by natural remedies (herbs, detox etc). I had for many years been very anti-meds, in particular antibiotics for a number of reasons. It turned out that antibiotics were a very important treatment component of my recovery. I had also assumed for a long time that my illness was caused by a virus (not least because a number of drs expressed that opinion).
    Those assumptions cost me at least three years of illness, as they did not allowed me to think of and undertake the relevant treatment.
    But challenging our assumptions and acting against them is not that easy, as our brains are wired in a certain way and the illness certainly doesn't help us in our ability to think straight. The inflammation that the immune system throw off affects our brains and thoughts as a result.

    I had a lot of tests over the years, but more recently hardly any as I tend to rely more and more on how I respond to a certain treatment, regardless of my prejudices. With CFS where there are very few studies, facts and certainties, it's more effective adopting an empirical approach to healing whilst keeping an open mind as possible, than relying on tests, in my opinion.

    All the best.
  12. snowathlete

    snowathlete

    Messages:
    1,990
    Likes:
    1,960
    UK
    as someone who in a previous life (ha ha) used to be a test engineer, i actually think that tests are extremely important. As you found xrunner, you have to take a broad approach and be carefull of your assumptions, but its tricky because we have to make some assumptions, otherwise we cant narrow it down enough to try anything.
    So tests are a useful way of gaining better evidence to base our assumptions on. I agree though that you have to be aware of how reliable (or otherwise) a certain test is, and you certainly need to learn about them yourselves. Fact is, even if you have a good doctor, they dont have as much to gain as you from getting well, so its up to you in the main. Thats my view anyway.

    In this specific case, if i dont tell but go straight for the meds, then i potentially waste alot of time and money, because if a test showed up a co-infection, then the research shows that the treatment wouldnt work. At least not until i dealt with the other co-infections that might come up.

    Best
    Joel

See more popular forum discussions.

Share This Page