The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Speciality Labs in USA

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by roge, Oct 26, 2014.

  1. roge

    roge

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    Other than mainstream ( quest, labcorp, ect)
    what is there in usa like say redlabs in belgium that does more in depth immune testing
    ie. what labs does KDM use when patients see him in Nevada?
    im not talking about genova ( although that does have some good tests)
    but labs more specific for testing for neuroimmune diseases like me/cfs and fm
    like say , unevx - is it still operating as the website is just 1 page and says 2 years ago it was offering limited testing menu
    do they just do cytokine testing now?

    I live in Canada and am seeing Dr Enlander in 4 days and would like to know other labs I can maybe suggest assuming he is willing

    going to post this on general discussion board as well in case there is less traffic here and I have just 3 days before I see him

    thanks

    cheers

    kyle
     
  2. roge

    roge

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    ok so sushi told me off line unevx is no longer.

    the one page on their website has their cytokine tests ( th-1/th2 profile and an inflammatory profile )

    both profiles test for around 10 cytokines and is $400 or was back then so much cheaper than testing individually

    as Quest is around $220 just for IL-2 and $220 for IL6 - not not only way more expensive but I think Quest only tests for a few - TNFa and some ILs

    I asked this question on another post of mine. where can I get a cytokine panel done in usa? surely there must be a lab in usa ?

    cheers

    kyle
     
  3. Daffodil

    Daffodil Senior Member

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    hi roge. are you sure unvex does not do cytokine testing anymore?

    enlander would know which labs do the cytokine testing, I think. he has been treating this a long time now.

    unfortunately, there are some good tests done only by Redlabs in Belgium now. I think you can send blood there but it would cost a lot. this is partly why I see KDM instead of anyone else. I am in Canada too.
     
  4. barbc56

    barbc56 Senior Member

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    Which of these tests are recognized by the medical community?

    Anyone have a good source that gives this information about which tests are valid.

    No, I am not saying others should not get the any tests whether accepted or not. That's personal choice.

    I have a hard time remembering which test is which. andd Trying to keep up witht these tests and what they mean can be rather overwhelming.

    Barb

    Edit for clarification.
     
    Last edited: Oct 27, 2014
  5. roge

    roge

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    hi daffodil

    thanks for the reply

    not sure if unvex still does cytokine or not, I got the impression from sushi they are gone for good. guess I will try and call them tomorrow and find out

    ya enlander should know, I just like to be prepared and get costs before hand so I can be ready with what I want done given my budget

    wouldn't it cost the same to ship blood to belgium whether you are a patient of KDM in usa or a patient say of enlanders

    im in Ottawa ( sadly im sure most americans know of Ottawa now after the latest terorrist attack)

    where are you?

    I have a good general physician here at least who supports me with LTD ( coming up on 10 years now for me - hard to believe ) and will prescribe most drugs if I desire but other than that Ottawa and even Canada at large is just aweful at not just treating these diseases but even acknowledging them as many doctors still sadly think you are a malingerer. I think dr bested was the only good dr up here for these diseases but I read she is not working at BC clinic any longer as she could not use her own protocol or something to that effect.

    disgusting that us Canadians who pay our taxes that help pay for our universal healthcare have to resport to going to usa to get the care and testing we need. our insurance should be paying or helping out at least but good luck with that - would need to hire a lawyer to go after the public health plan and the cost of that would be same as any savings from insurance paying for our medical costs so no point.

    im in a semi flare now and preparing to see enlander , but after get back might try and chat with you one on one to get more of your experience with KDM and this disease.

    cheers

    kyle
     
  6. Ema

    Ema Senior Member

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    A quick googling will answer that question affirmatively for several methods of testing with varying degrees of high sensitivity. These tests have been used in the research community for years.

    If you're really asking whether or not the typical GP down the street knows about cytokine testing and accepts it as proof of inflammatory disease, well, that's another question entirely unrelated to the validity of the test. And frankly, that's a pretty high bar. I doubt most GPs could even define a cytokine.

    Of course I'm sure you know that this (like almost everything in ME/CFS testing and treatment) is somewhat experimental and the interpretation of such results for both our disease and others where cytokines have shown characteristic patterns of dysregulation is only in it's infancy. No one knows exactly what cytokine levels should be (or if there even is such a thing) and no one ever will if no one gets them tested and just calls the testing dodgy instead.
     
    Last edited by a moderator: Oct 28, 2014
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  7. Sushi

    Sushi Senior Member Albuquerque

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    I don't know what lab unvex is--I thought you were asking about VIPDx. So, good to call.

    Sushi
     
  8. roge

    roge

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    ok sushi - sorry - thought u meant unvex - ya will call the lab tomorrow

    thought i read somewhere Vip turned into unvex

    well said ema !!

    barb, of course cytokine tests are valid, not as clear cut as say tests that show one's CD4 cells are almost AIDS like , like mine at 378 ( range 600-1500) but still they can help guide treatment and get confirmation on how balanced or unbalanced th1/th2 parts of the immune system are ...

    are they accepted ? well by who ? is FM and ME/CFS accepted by a portion of mainstream medical community - well sadly and disgustingly no but that certainly doesn't mean they are not real or vaild- far from it !!

    I have 2 choices: stick with fully accepted medical testing and continue to get worse or stay same which is disabled or i can try some more perhaps not 100% accepted and valid tests ( by mainstream doctors that is) and try and get better, even if odds of that are low, i have to try.

    This disease is so frustrating and I actually sort of gave up a few years ago after years of reading and learning like a PH student between 2005-2010 with so much motivation but this disease does have a way of slowly crushing your drive and motivation and making you feel down and depressed with how the disease got worse for me ( mainly my tendon pain to point i could barely walk or sit without pain) but now i am back to trying again

    i don't think i will ever give up - i have a strong spirit - i actually couldn't believe i did sort of give up given my spirit but i think we all at one point have gone through these cycles of just accepting the disease and using our energies to just enjoy what we can and then swinging to "no i want more and i will now use most of my energies to try and get better some how"

    as a side note - i will soon be starting cannabis ( equal parts THC and CBD) not only for pain relief but also for its immune modulating and anti inflammatory properties. canibinoid receptors have been detected in brain glial cells and immune cells. some research is sowing CBD is neuroprotective in CNS inflammatory conditions...

    I believe cannabis and especially CBD compound shows great promise in treating many diseases....I just hope the governments around the world support more research as no doubt big pharma has them all in their back pockets....we shall see i guess

    cheers all

    kyle
     
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  9. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think Barb has a valid point here. You ask who these cytokine tests are accepted by as a basis for treatment Kyle and I would actually like to know that. The ME researchers I have met at international meetings are pretty much in agreement that these tests are not a basis for individual clinical decisions. Cytokine tests have been done by researchers for decades, yes, but even where you get some hints of a difference at a statistical level in an ME subgroups, as Mady Hornig has, interpreting individual blood values is fraught with problems. They proved completely useless in the inflammatory disease I worked on. Who are the researchers who recommend using these tests for clinical management?

    (And to be honest the idea of Th1/Th2 imbalance is, I suspect, just a 'mainstream' immunological fairytale.)
     
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  10. barbc56

    barbc56 Senior Member

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    @Jonathan Edwards

    It's hard to sort out which tests are "valid" or not from reading on forums or googling. It makes a difference, at least for me when making medical decisions. I would think this type of information would be helpful for whatever type of medical advice patients choose to use, even if that choice is alternative treatment.

    Thanks.

    Barb
     
  11. taniaaust1

    taniaaust1 Senior Member

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    Im with you on that one Barb. Some doctors unless its a "standard recognised test" would completely ignore the results even thou the test itself may be a good one. I have had doctors in which would be truely upset if I brought not standard recommended test results to them. So I agree its helpful to know what is and what isnt.
     
  12. barbc56

    barbc56 Senior Member

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    .

    I would hope doctors would do this for any test not validated, or standardized. Otherwise, we get data that detracts from finding out what is going on with our condition.

    Although I am very proactive when it comes to my health care, it's not a direction I choose to go.

    Others may choose differently and that's fine.

    Barb
     

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