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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Which of the following pathogen tests should i do?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by jengonwin, Jun 21, 2016.

  1. jengonwin

    jengonwin

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    Hello.

    I am interested in doing more extensive testing. I am suffering from "CFS" according to my doctor.

    I have done some research and i decided to contact "Armin Labs" as i heard from a friend that they were good for lyme.

    I emailed the lab with my symptoms and they gave me the following recommendations:

    "You should be tested for the actual and chronic Borrelia burgdorferi activity by


    1. Borrelia-Elispot (actual T-cellular Borrelia activity)

    2. CD57 count (chronic inflammatory Borrelia and other coinfections chronic activity)


    According the interpreted coinfections-checklist attached you find on position….:


    1. Chlamydia pneumonaie + Coxsackie Virus (5 symptoms).

    2. Yersinia + Mycoplasma (4 symptoms)

    3. Ehrlichia/Anaplasma + Rickettsia + Chlamydia trachomatis + EBV/CMV/HSV (3 symptoms)


    I would propose that you should be tested for an active Borrelia burgdorferi and co-infections by:


    1. Borrelia-Elispot + CD57 cell count

    2. Chlamydia pneumoniae-IgG/IgA-antibodies + Chlamydia pneumoniae-Elispot + Coxsackie-Virus-IgG/IgA-antibodies

    3. Yersinia-Elispot + Mycoplasma antibodies

    4. Ehrlichia/Anaplasma-Elispot + Rickettsi-IgG- antibodies + Chlamydia trachomatis-Elispot + EBV-Elispot + CMV-Elispot + HSV1/2-Elispot



    It is very important for the right therapy decision, which infections are responsible for your symptoms.


    So for example in active virus infections, it is not allowed to use antibiotics."


    I do not have much money but i could afford to test Borrelia Elispot + CD57 cell count. Do you think this is unwise as the lab has said with active viruses you cannot use antibiotics?

    What do you guys think the minimum testing i should do?

    Thanks.
     
  2. msf

    msf Senior Member

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    Borrelia (Lyme) is a bacteria, not a virus. The only viruses on that list are EBV, HSV, CMV and Coxsackie.
     
  3. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    If you do not have much money you may do well to ignore the whole thing. The comment on 'therapy decisions' with the example of 'active virus' does not make much sense. Remember that private labs will sell you whatever tests you want to buy. I would suggest asking the physician looking after you what might be worthwhile.
     
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  4. jengonwin

    jengonwin

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    Thankyou for clearing that up. My physician was mainly interested in testing for borrelia but i became confused when the lab said that if i had a Virus it was important to know as it Could change "treatment"
     
  5. msf

    msf Senior Member

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    I think the lab were suggesting that you get tested for viruses as they would need to be treated with something other than antibiotics which you might take if you tested positive for Lyme, for example.
     
    Last edited by a moderator: Jun 21, 2016
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  6. msf

    msf Senior Member

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    I think it would be worthwhile looking up any specific symptoms of the pathogens they want to test you for, and seeing if you have had any of them. For instance, both Lyme and Yersinia can sometimes cause distinctive rashes, whilst Yersinia and Coxsackie can both cause right lower quadrant (apendicitis-like) pain. I had the latter, and when I was tested I was positive for Yersinia.
     
    duncan likes this.
  7. msf

    msf Senior Member

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    Jengowin, the truth is that your GP is very unlikely to know whether the pathogens that the lab recommended testing are likely to be relevant or not. There is a chance (just a chance) that an ID will, but if they work for a public healthcare organisation then they will have to act in accordance with their guidelines, whether they believe in them or not. That leaves you with three options: 1.) hope they are not relevant. 2.) ask a lab to recommend tests, as you did, or 3.) see a specialist, which then means you have to choose between an IDSA or a ILADS-accredited doctor. Whatever you do, I would encourage you to research things on your own and not just believe what people tell you.
     
    Last edited by a moderator: Jun 21, 2016
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  8. Kina

    Kina

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    Sofa, UK
    Thread has been re-opened. Please stick to the topic of the thread and avoid personal attacks.

    Thank you
     
    Last edited: Jun 22, 2016
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  9. taniaaust1

    taniaaust1 Senior Member

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    "Do you think this is unwise as the lab has said with active viruses you cannot use antibiotics? "

    I'd take that to mean that if you have viral coexisting conditions, of cause then followup antibiotics wouldnt work for those and the person would then remain ill.

    I too say go with what your doctor is currently suggesting, that's always a good starting place with things. You can always do more testing at a later date if you think is needed.

    ..

    Rickettsia is one thing which seems to have been left in the ME field though high amounts of people with ME in some places have been found to have coexisting Rickettsia. One of my old specialists (now retired) in Sth Australia once did his own personal study on this and had his patients blood sent to one of our common labs here for testing for it.. shockeningly out of 600 of his cfs patients, around half of them came up positve for it (I didnt thou). I know the original rickettsia/cfs study which was done by another in Sth Africa I think it was.. also found very high numbers of us having this.

    finding out all the coexisting things people with ME have and should treat can be a long process and you dont need to do all the testing for everything all at once.
     
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  10. jengonwin

    jengonwin

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    I spoke with my physician. Due to my clinical symptoms he wants me to do these tests with armin labs...

    borrelia EliSpot
    Borrelia Serra Spot
    EBV EliSpot
    EBV IgG/iGm
    HHV6 IgG/IgM

    This is going to cost 500 euros which is about 800AUD. Its abit out of my price range. I am wondering if anyone knows if i can get those virus tests done in Australia?

    Thanks.
     
  11. b-c

    b-c

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    Hi jengonwin,

    I don't know for sure but a relative of mine who also suffers has just had this kind of testing done through a clinic in Nth Sydney who specialise in tick borne diseases. I know it's expensive here (in Aus.) too so it being local might not help that much in the cost department unfortunately. I'm still in consideration of going to the same place myself, but the $$ are not easily accessible for me either.

    Anyway, hope that helps, if you haven't found another option already.

    [caveat: I'd promised myself I wasn't going to post again until i'd contributed to the 'Introduce yourself' thread - I've been lurking here since last August when I first discovered PR and realised ME/CFS was going on (bad crash - previous med-mild levels). I think i've literally posted once. But I've also literally been unable to put together said post in any coherent fashion! So, in lieu of that, thanks to everyone whose words, thoughts, reports and analyses have helped me during that time! :)]
     

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