The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Arminlabs results help please

Discussion in 'Lyme Disease and Co-Infections' started by Maria1, Dec 22, 2016.

  1. Maria1

    Maria1 Senior Member

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    I recently got awarded a grant for Lyme disease testing. It was well over a year from applying and the charity are no longer accepting applications.

    I just got my results back and would be grateful for interpretation.

    Borrelia EliSpot
    1 Borrelia b. Full Antigen ! 23 SI
    0-1 = negative
    2-3 = weak positive >3 = positive

    1 Borrelia b. OSP-Mix ! 19 SI
    0-1 = negative
    2-3 = weak positive >3 = positive

    1 Borrelia burgdorferi LFA-1 0 SI
    0-1 = negative
    2-3 = weak positive >3 = positive

    My CD 57 was 17 which also seems significant.

    I'm aware this test is controversial. I don't know if what seems to be a strongly positive result makes it less so?
     
  2. Daffodil

    Daffodil Senior Member

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    if your elispot is 23 thats VERY positive!

    i think cd57 is very low at 17 if i remember correctly...but this test apparently might not mean much
     
  3. Maria1

    Maria1 Senior Member

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    Hi Daffodil, sorry I thought I'd power this in the wrong place so now I've posted twice with an extra bit!

    Thanks for your reply. I'm really quite shocked at my result and have no idea how to proceed! I think my GP will dismiss this.
     
  4. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    As your result is so impressive, I would repeat the test using a 'conventional' NHS test (at the biowarfare safety level laboratory used in UK for Lyme tests) using their serology test (antibodies) and PCR (using a private lab if they won't do it) by asking your doctor for this. If they are positive, I would argue you have Lyme disease. The reason I think this is important is two fold:

    1) You could get an official diagnosis of Lyme disease. If, you get worse, then your relapse won't be blamed on psychogenic causes, or a 'belief' in Chronic Lyme - because you tested positive with conventional assays before you got worse and re-labelled with 'CFS'. CFS diagnosis is not allied to any need for an infection, simply tiredness, 1 symptom, and PEM. (Not ME or Lyme).

    2) If on conventional NHS tests you test negative, but have an established clinical history of ME/CFS/Chronic Lyme type illness then a short course of antbiotics won't work and there's no point fighting the system as you won't get anywhere because the Governments have decided only people with classical Lyme disease, have it. (B31 strain using an ineffective 2-tier test relying on antibodies) - hence the need for Elispot tests at Arminlabs because the NHS test and others are mostly unreliable garbage that pick up only newly infected bitten people.

    I think relying on one private lab (Armin) won't help you get a diagnosis or treatment and with such a high 'SI' result, at this point in time, it might be possible you actually have 'conventional' Lyme disease and can go down that route. I would say time is of the essence as once this bug has gotten into your immune system and your immune system 'forgets' it there, then you may end up with a more severe presentation of symptoms with no realistic treatment option and an 'SI result of 0 or 2 despite being bedridden - the unfortunate situation for most people who had Lyme and then were declared 'fit for work' once they stopped producing any immune response.

    Your current immune response (Cytokine - Interferon Gamma) is absurdly high. Meaning your immune system 'sees' Borrelia clearly, not 'just about', like most PWME who test positive after years or decades sick.
     
  5. Maria1

    Maria1 Senior Member

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    I tested negative on the standard NHS test a few years ago. I became properly ill 4 years ago, but my last tick bite was a few years before that. I'm pretty sure I have had more than one tick but one of my symptoms is memory loss, and people I have been with have had ticks. We never thought anything of it. My kids have had them too but I can only clearly remember one on me and one on my daughter. They were very engorged. My other memories are hazy, but I think I have a memory of some Erythema migrans type rash but we've also had ringworm at some points so it could have been that. It's a bit like trying to remember all your wasp stings!

    Is this result really high then?
     
  6. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Yes, but as you know the result is sadly ignored due to politics because they are restricting Lyme disease to one strain (there are many others not looked at) and only using current poor detection technologies for the single strain anyway - so it's not reliable. This should change as better technology proves evidence of either autoimmunity in Chronic Lyme (a different illness to 'four weeks of antibiotics and you should be cured' - Lyme disease) and/or evidence of infection not relying on an antibody immune response that may have turned off - false negative test results and misdiagnosis of CFS incoming....

    How can this be legal? Because if we're talking about ELISPOT (LTT) this does not show a direct infection, it shows a cytokine immune response. They can argue in court you have no evidence of positive Borrelia PCR (bits of genes from Borrelia) or Borrelia Culture to prove you have an active infection and they'll do that by not giving you PCR or Culture which they would do if you were a politician or someone important to them. As a person with ME/CFS you are seen as mentally ill, or 'mistaken' and have Post Treatment Lyme - a nonsense as we haven't been treated yet.

    Factor in, you may have a different strain so you're barking up the wrong tree completely (Other strains exist).
    Factor in, you may have a tissue born infection and it simply won't show up in your blood (PCR, Culture).
    Factor in, the PCR/Culture methods are also unreliable. The testing quite frankly isn't where it needs to be. The last thing I head was Dr Richard Horowitz (Chronic Lyme expert) was estimating around another 3 years until testing improves.

    The only way around this in a desperate low yield way is to exhaust all current test methods to produce a dosier of positive test results. So if you were into that, consider saving up money and get a urine test like the Nanotrap antigen test. Unlike a LTT assay, this is proof of an actual Borrelia infection. As the technology is used in an American University, it's unlikely the UK will call this a quackery test as then they are insulting the University name. So if your doctors do, report them to the American university quoting what they say about them and wait for the response and give it to influential people if it's beneficial.

    A last ditch thing to do is to Fly to America (probably an absurd idea) and get an American Lyme doctor who sees you to draw blood for the Advanced Labs Borrelia culture test that includes a photograph of the spirochetes they grow in a dish from your blood over many weeks. You might be able to get UK doctor to do this (and not fly to the USA), but they would probably have to be living in a EMP protective bunker first, or the GMC will get told, and they'll get fired for trying to help you - hence no UK doctor will ever allow you to pay for this test privately (with their signature), but they will prescribe CBT/GET that has a null effect which is deemed far safer that an adult making their own decisions about their own finances.

    Sadly, this 'dead end' Governments created by not infecting vaccines not leading to novel immune supression regarding chronic intracellular infections is why financially starved state health dependent people in the UK sell their houses and live in caravans (Vs rich Europeans who do nothing of the sort) to get hyperthermia treatment (fever therapy) in Germany (also in Switzerland/Austria) to kill the bacteria by basically cooking it from inside.

    So it seems on balance, arange a nano trap urine test and take it from there as the Health Protection Agency and other friends of the nanny state have their fingers in their ears of anything other than their state approved tests.

    The sick thing about this? The CDC don't even require a positive test for Lyme - it's just desirable and diagnosed is based on a CLINICAL PRESENTATION - as it is with ME CFS + a reported history of an exposure event to tics.

    The UK NHS ignore this. So what can you do?
     
    sarah darwins likes this.
  7. JES

    JES Senior Member

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    Many CFS/ME patients have never been in contact with Borrelia but still produce a high cytokine response. There was an article a couple of years ago showing that people with CFS/ME generally have a strong pro-inflammatory cytokine response for around the first 3 years of the disease, after which the immune system exhausts itself and moves into a different mode.
     
  8. Maria1

    Maria1 Senior Member

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    Thank you so much for your responses to my original post.

    I am still not sure what to think about the results. I have read about false positives and conclude that my results are too high for this to be likely, but it does seem that the test could be picking up something other than Lyme. My brain is pretty shot with whatever I have, so I find it hard to take in information as I used to.

    My GP referred me to an infectious diseases specialist and the appointment is in a couple of weeks. I expected to be dismissed by the GP, so was rather shocked she suggested the referral.
     
  9. Fudge

    Fudge

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    Maria, I had a strong positive Armin elispot. However, I was not happy to go by just one lab, so had the same test done at BCA Lab and it came back negative, along with a negative immunoblot.
     

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