Home Forums General Discussion iSpot test from Pharmasan

  • This topic has 5 replies, 2 voices, and was last updated 10 years ago by Maz.
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  • #308226
    lorena9
    Participant

    Hello . I am wondering if anyone has heard of the effectiveness of the iSpot test from Pharmasan for lyme testing? My husband’s Igenex test came back “equivocal” and my doctor ( who is treating me for lyme) mentioned that he should do this test.
    On another note, can you have a decent/ High CD 57 but still test positive for lyme on the igenex? I have been on abx for lyme for 6 months and my test results just came back positive ( from Igenex) with a high CD57??
    Thanks everyone

    #371831
    Maz
    Keymaster

    @lorena9 wrote:

    Hello . I am wondering if anyone has heard of the effectiveness of the iSpot test from Pharmasan for lyme testing? My husband’s Igenex test came back “equivocal” and my doctor ( who is treating me for lyme) mentioned that he should do this test.
    On another note, can you have a decent/ High CD 57 but still test positive for lyme on the igenex? I have been on abx for lyme for 6 months and my test results just came back positive ( from Igenex) with a high CD57??
    Thanks everyone

    Hi Lorena,

    If you click on the link below, you’ll find info from the Boston ILADs conference from a lecture given by one of the developers of the CD57 test and how widely it can be interpreted. GS said in her lecture that many physicians don’t know this info, so this is why it is important that it is understood that such testing is just a guide, over time, to a patient’s progress and that a CD57 test, run on consecutive days and even at different times of the day, may have widely different readings! The real value in the CD57 test is to check for immune function at the outset, when the patient is sick (e.g. a low CD57 can mean the patient’s immune system is unable to produce enough antibody for a test), and then when the patient is free of symptoms. It’s probably not worth running it at intervals throughout treatment, because immune function will be all over the place (Lyme waxes and wanes) and, hopefully, one wouldn’t stop treatment until well again for a good period of time.

    viewtopic.php?f=1&t=8244&p=65146&hilit

    I don’t know much about the new Elispot Lyme Array run by Pharmasan labs, but it appears that a researcher who helped to develop the iSpot test spoke at the last ILADs conference in San Diego, last fall. It’s a relatively new test, just on the market within the last year or so and it may be why there hasn’t been much buzz about its accuracy (or not) yet within the Lyme community:

    http://ilads.org/lyme_programs/sandiego/speakers/bio_jin.php

    http://newhope360.com/supply-news-amp-analysis/pharmasan-labs-introduces-ispot-lyme

    From the blurb, looks like the test is looking for T-Cell response to specific borrelial outer surface proteins (OSPs), called “antigens.” So, it would be an “indirect” form of testing, similar to a western blot that looks for the body’s antibody response to borrelial OSPs. This seems like a pretty novel approach, but what I have to wonder is how well a person sick with Lyme may be able to produce T-Cells! Like HIV, Lyme takes takes out immunity, so T-Cell response may well be stunted in this scenario. So, it might be a really specific test for T-Cells produced to borrelia, but not very sensitive, if the patient’s response is severely compromised by Lyme.

    A year or so before, the new Burrascano test – a “direct” form of testing for the actual Lyme bug – was being hailed as the best test on the market, but drawbacks included lengthy culture times (they grow spirochetes in culture from blood samples) and high cost. Direct testing also relies on the bug or a piece of the bug being present in the sample drawn. Lyme burrows out of blood vessels into tissues pretty quickly, so may not be easily found in blood. This is why antibody “indirect” testing is generally preferred.

    Can you share what your hubby’s western blot results were? If he hit on some specific WB antibody bands (even if readings are “indeterminate”), this may provide enough evidence, in combo with his symptoms and history, not to have to bother with further testing. In other words, a diagnosis of Lyme shouldn’t be based on test results alone and should be based on complete work-up and a clinical diagnosis.

    #371832
    lorena9
    Participant

    Thanks Maz for your wealth of info. I have looked at the ILADS video stream on CD 57. Thank you that was helpful. As I said my CD 57 was “normal” range” which even confused my doctor as he said he is not sure I have lyme anymore although tested positive still on Igenex. He recommended I go back on abx if my symptoms return. And we all know, symptoms do come and go.

    Also thank you for asking to look at my hubby’s igenex band results. I am also very confused there as well. I have noticed a gradual change in him, mostly in his mood and fatigue. I always attributed it to hard work and nearing 60. But then he developed flutter and irregularity of the heart,although always had a good heart and has been very athletic – he also seems to have more muscle stiffness. His doctor here in London has him on beta blockers and blood thinners for the heart. I recalled that I had also irregular heartbeat for years as a symptom of lyme, although this was so long ago no one even thought about lyme then. Hence, the reason I wanted him to have the Igenex test done. Here are the results as best as I can manage rewrite them as i cannot copy the pdf document that the test results are on.
    SO on his IgM results they were listed as negative but here are the bands:
    18 kDa +
    **23-25 –
    28 –
    30 +
    ?? **31 –
    ** 34 –
    ** 39 +
    **41 IND
    45 –
    58 –
    66 –
    ** 83-93 –
    Here Is the IGG results which came in as equivocal
    18 kDa +
    **23-25 –
    28 –
    30 –
    **31 ++++
    **34 IND
    **39 IND
    **41 ++
    45 –
    58 +
    66 –
    **83-93 – AS you can see there are more + on his IGG. Again, not sure what to make of this and this is why wondering if he should go to the US for the iSPot test. Now i have read more on this test I am having second thoughts. Many thanks Maz for the info you sent and anything else you can say about this Igenex result test Lorena

    #371833
    Maz
    Keymaster

    Hi Lorena,

    @lorena9 wrote:

    I have looked at the ILADS video stream on CD 57. Thank you that was helpful. As I said my CD 57 was “normal” range” which even confused my doctor as he said he is not sure I have lyme anymore although tested positive still on Igenex. He recommended I go back on abx if my symptoms return. And we all know, symptoms do come and go.

    Yes, you have that absolutely right – Lyme is a waxing/waning illness. It’s great that you’re doing so well and now asymptomatic. A good tip-off that the doc isn’t very experienced in Lyme is when they say, “I don’t think you have Lyme anymore and re-test for it.” Once a person has Lyme, it’s like any infection…a piece of it remains with us for life. The goal with Lyme and coinfections is to get them into remission and to keep them there by keeping the immune system strong. Relapses with Lyme are, unfortunately, very common and we probably never get rid of antibody to the infection (think: chicken pox/shingles, latent strep/strep carriers, latent/active TB, etc). Besides, antibodies (immunoglobulins) are there for good reason…to keep watch. ๐Ÿ˜‰ Are you able to share your CD57 reading? It sounds like your immune function is in good shape if your reading is high, but this is definitely worth watching over time. Many people like to go off all treatments when in remission to give the body a rest. There is nothing wrong in this, especially if doing everything poss to keep immune function strong, but it’s wise not to rest on one’s laurels, so to speak.

    Also thank you for asking to look at my hubby’s igenex band results. I am also very confused there as well. I have noticed a gradual change in him, mostly in his mood and fatigue. I always attributed it to hard work and nearing 60. But then he developed flutter and irregularity of the heart,although always had a good heart and has been very athletic – he also seems to have more muscle stiffness. His doctor here in London has him on beta blockers and blood thinners for the heart. I recalled that I had also irregular heartbeat for years as a symptom of lyme, although this was so long ago no one even thought about lyme then.

    Yes, you and me, both. Heart irregularities were one of my earliest symptoms (one of many) and carried on for years. I had extended periods of time where I was free of it and periods where it seemed relentless. Holter monitoring, heart ultrasound and EKG didn’t pick up anything wrong. My first LLMD’s Dad was on the heart transplant list and when he diagnosed and treated him for Lyme, the heart issues resolved…no need for a transplant. Lyme advocates and LLMDs have compared the low quality of life of chronic Lyme patients to that of heart failure patients. If interested, I’ve been reading about all kinds of success with various alternative therapies for heart and circulation.

    Hence, the reason I wanted him to have the Igenex test done. Here are the results as best as I can manage rewrite them as i cannot copy the pdf document that the test results are on.

    AS you can see there are more + on his IGG. Again, not sure what to make of this and this is why wondering if he should go to the US for the iSPot test. Now i have read more on this test I am having second thoughts. Many thanks Maz for the info you sent and anything else you can say about this Igenex result test

    Probably the easiest way to learn about the IGeneX WB and what the various bands mean is to read the following two links.

    http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

    http://www.lymenet.de/labtests/brenner.htm

    I’m not a medical professional and can’t definitively say if your hubby has Lyme or not, but I’ve seen a lot of WB results and your hubby’s IgG results seem to be pointing heavily towards Lyme being a culprit with 4 hits on ** antibody bands and a couple hits on others. On IgM, if there was a full + on Band 41 instead of an indeterminate reading, he’d be CDC positive. As you’ll read in the first link, if the test picks up some antibody, but not enough for a full +, it’s still highly significant, because there wouldn’t be any amount of antibody on such a specific band for borrelial antigen if there wasn’t some there. In combo with the symptoms you’re describing and having lived in a pretty endemic region of the US, it would just be wise to get the once over by a good LLMD. Where there is cardiac involvement, it’s just a wise precaution.

    When you’re able, would you be able to jot us a testimonial of your success in knocking things into remission for the main website? Would be appreciated by many who would see it and able to identify with your story…it’s also a great way to “pay it forward!” ๐Ÿ™‚ Thanks, Lorena.

    If you would like info on a different LLMD for your hubby, I’d be glad to share info with you. Just let me know. Also, if you have any questions on the links above, I’d be happy to do my best to answer.

    #371834
    lorena9
    Participant

    Hi Maz:
    Thanks for the links and your valued info and insight.

    Not sure I am doing these quotes properly…
    I would be happy to write a testimonial, although I am not sure I am in remission. My RA factor was negative when I was on Mino and my CRP normal, right now they are both positive again, although not too elevated. ( anti CCP at 38) My CD 57 is 136. With the help of abx the pain in joints and muscle is much less, and the fog and darkness due to Lyme has been lifted. For the last two weeks I have been”active ” , looking forward to doing things again. (Although as I write this I do feel my wrist joint started to flare).

    YEs, please I would love to hear more on this…. not sure quote is going through so more on alternative therapies on the heart and circulation. Also if you would recommend an LLMD in our area ( Northern Western MA) as you kindly offered, it would be much appreciated.
    Thanks again Maz –

    #371835
    Maz
    Keymaster

    Hi Lorena,

    @lorena9 wrote:

    Not sure I am doing these quotes properly…

    Yes, think something happened with those “quotes” there. ๐Ÿ˜‰ If you want to quote text from someone’s post to reply, here are some simple steps:

      Click “quote” button at top right of person’s post
      The other person’s post will appear in the new window.
      Highlight and delete any words or sentences you don’t want to reply to
      Highlight the bits you do want to reply to and then click the “Quote” button again at the top of the post where it has all the tabs.
      When finished, just hit submit button as usual to make post.

    I would be happy to write a testimonial, although I am not sure I am in remission. My RA factor was negative when I was on Mino and my CRP normal, right now they are both positive again, although not too elevated. ( anti CCP at 38) My CD 57 is 136. With the help of abx the pain in joints and muscle is much less, and the fog and darkness due to Lyme has been lifted. For the last two weeks I have been”active ” , looking forward to doing things again. (Although as I write this I do feel my wrist joint started to flare).

    No worries about a testimonial just yet! Sorry – sounded like you were off abx and doing pretty well, so just thought to ask. ๐Ÿ˜‰

    As GS mentioned at ILADs, the CD57 test can vary 149 points either way on the same day with diurnal testing. So, it’s really only a useful test if run when symptoms and disease labs have been in remission for a reasonable period of time. As you seem to be experiencing renewed symptoms and also elevations in RA labs, you might want to talk to your doc and get on top of this quickly by resuming the abx treatment (abx and doses) that worked for you before. As with many RA patients, Lyme patients sometimes also remain on a low maintenance dose when in remission, just to keep it there. While Dr. Brown’s goal was to wait till patients had been in remission in both symptoms and labs for a good period of time before attempting to stop their AP, I have spoken to a few of his patients who remain on maintenance AP to this day. Pat Ganger, who founded Road Back in the early 90s, after Brown’s passing, still takes her minocycline, regular as clockwork and she must be in her 80s now. She also told me that her side-kick Carol Lange (in book and had RA) is also still on her AP – no joint damage to this day and just some creaky knees with old age. Anyway, this is just to reassure you about long-term treatment and that it might be worth talking to your treating doc about this, especially as you had such great results and would be a shame to go backwards now.

    YEs, please I would love to hear more on this…. not sure quote is going through so more on alternative therapies on the heart and circulation. Also if you would recommend an LLMD in our area ( Northern Western MA) as you kindly offered, it would be much appreciated.

    Will do what I can to get a PM off to you shortly about heart/circulation therapies and also LLMDs in MA and CT.

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