1. Guest, 'News In Brief' from w/c 3rd Dec can be read here.
    Dismiss Notice

Low CD57 (lymphocyte killer cell 57) count Lyme marker

Discussion in 'General ME/CFS News' started by chfrazzel, Mar 25, 2018.

  1. chfrazzel

    chfrazzel Established Member

    Messages:
    13
    Likes Received:
    38
    My dd recently began seeing a naturopathic dr. in hopes of finding something to help with her fatigue. He wanted to do a few blood test that her primary doctors had not done. One of which was a marker for Lyme called CD57. It tests the level of a lymphocyte killer cell called CD57. Her result was low, supposedly meaning her CD57 lymphocyte has been suppressed and she could be positive for Lyme. (I would have provided more details but my brain just went into brain fog mode). Primarily, I am wondering if anyone else has had this test or if anyone knows its helpfulness in determining if Chronic Lyme could be a trigger or contributing to her chronic fatigue. Secondarily, I am wondering if there are other diseases or syndromes associated with having a low CD57 result.
     
  2. duncan

    duncan Senior Member (Voting Rights)

    Messages:
    248
    Likes Received:
    863
    I've had the CD57 test done many times. My infectious Disease doctor is a fan. I have mixed feelings, and I suppose I reflect the greater Lyme community that way, i.e., the jury is still out.

    I recall a conversation I had with a powerful NIH Lyme researcher years ago about cxcl13 as a marker for neuro Lyme, and I was told, no, the chemokine was too unreliable to act as a marker. Since then, I have seen any number of studies advocating the possibility of cxcl13 as a putative proxy marker for neuroLyme, so who knows for sure?

    I guess the moral of my story is I personally wouldn't use CD57 by itself to decide if I had Lyme. I would check the usual standbys like which bands emerge in a Western Blot, and I also would see if the C6 stuck.

    I don't have great faith in those, either, btw, which is why I endorse getting as much data/labs as possible, even with a bull's eye in hand (and even more so without).
     
    Mattie and chfrazzel like this.
  3. chfrazzel

    chfrazzel Established Member

    Messages:
    13
    Likes Received:
    38
     
  4. chfrazzel

    chfrazzel Established Member

    Messages:
    13
    Likes Received:
    38
    I have researched many of CFS/ME's comorbid illnesses but have recently been looking into the Lyme possibility. Could you give me some guidance of a good place to start to help sort out the good Lyme information from the bad. Sorry, my vocabulary left me an hour ago. lol My dd had a Western Blot test done years ago which was negative, but we have come full circle again and are looking for other markers to rule it in or out.
     
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    2,785
    Likes Received:
    30,673
    Dear @chfrazzel,
    I don't think a CD57 count provides any useful information about Lyme disease. (I am a retired professor of medicine/immunology)
    Almost by definition, to my mind, a 'naturopathic doctor' is a quack who should not be trusted to make a sensible diagnosis.

    If you want 'good Lyme information' go to an infectious disease specialist at a university based hospital.
     
  6. chfrazzel

    chfrazzel Established Member

    Messages:
    13
    Likes Received:
    38
    I am also a bit confused about the CD57 results. The naturopath said her test results for CD57 were low indicating possible Lyme. But in my reading an increase in CD57 seems to indicate infection. Per a immunology publication: "its (CD57) expression increases with age and is associated with chronic infections, particularly human cytomegalovirus infection." I am not understanding why a low result would indicate Lyme. As you can tell, I am just starting this research..
     
  7. chfrazzel

    chfrazzel Established Member

    Messages:
    13
    Likes Received:
    38
    I understand what you are saying. I have been taking all of his info with a grain of salt, thus my own research. Thank you for you honesty. We live in the western US. Can you suggest a good university based hospital with a good infectious disease Dr.? We expect to have to travel, as we already do, to get answers.
     
  8. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    2,785
    Likes Received:
    30,673
    I don't think you need to be fussy. Certainly in the UK every university hospital will have an infectious disease unit that know what there is to know about tests. Almost all of the discussion around Lyme tests is around test that are pretty little use. The more a doctor 'specialises' in Lyme the less I would take them seriously. It is an area with uncertainties but a totally routine area.
     
  9. duncan

    duncan Senior Member (Voting Rights)

    Messages:
    248
    Likes Received:
    863
    That is simply not accurate. There is frequently very little routine about Lyme diagnostics and treatment; this is certainly more so if the disease is not caught early. Ditto for other tick-borne diseases like bartonella and babesia.

    Not sure what you are trying to say here. Discussion and controversy surrounds just about every Lyme metric, with the possible exception of direct testing - which, unfortunately is very rarely attempted outside an EM rash (which, ironically, is when it is least needed to render a Lyme diagnosis.)

    Be fussy in the sense that you get your results as detailed as possible, @chfrazzel . There is a recognized bifurcation within the Lyme medical community, that is actually be played out in real time in the US courts.
     
    chfrazzel likes this.
  10. chfrazzel

    chfrazzel Established Member

    Messages:
    13
    Likes Received:
    38
     
  11. chfrazzel

    chfrazzel Established Member

    Messages:
    13
    Likes Received:
    38
    Could you expand on what you mean by, "get results as detailed as possible."?
     
  12. duncan

    duncan Senior Member (Voting Rights)

    Messages:
    248
    Likes Received:
    863
    Well, don't be satisfied with a report that just says "positive" or "negative". You are in the US, so you have the 2 step CDC diagnostic that makes you first be tested with a Lyme test called the ELISA. Only if the EILISA is positive can you get a Western Blot - which is the test you really want to have. You can sometimes get the WB done without the ELISA. If you can get the WB, this is where details matter. You will want to see which bands you test positive for, as this is one of the many areas of controversy.

    I personally would also ask for the C6, which the NIH and CDC love, but it too can miss.

    Anyway, I suggest you hit two good Lyme websites. Lymenet Europe, which is pretty silent these days, but has a treasure trove of Lyme data. And Lymenet Flash, which is US-based and very active and you can ask questions there. They are very LLMD-centric, though, so be prepared - that means they are often anti-CDC/IDSA giuidelines.

    You are in western US? That could matter if you are checking for other tick-born diseases. For instance, if you check for babaesia, you'll probably want to check for b duncani, not just b microti.

    It can get harry pretty quickly, just a word to the wise, and that's sticking to the main roads sanctioned by the IDSA/CDC/NIH.
     
    chfrazzel likes this.
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    2,785
    Likes Received:
    30,673
    Duncan and I have argued about this before and I have no interest in further discussion. Assessment of Lyme is a routine matter. It has uncertainties but any competent infectious disease physician (like a member of my family) is fully aware of all the issues that are actually useful to someone wanting to know what to do about their health problem.
     
    Trish likes this.
  14. chfrazzel

    chfrazzel Established Member

    Messages:
    13
    Likes Received:
    38
    I appreciate your opinion. Still trying to navigate this Lyme world and come to a conclusion of which route to take.
     
  15. duncan

    duncan Senior Member (Voting Rights)

    Messages:
    248
    Likes Received:
    863
    Only if caught early, and even then, the issues are growing (for instance, how to you check for Lyme if only one or two weeks have elapsed since the bite? Answer: You don't - you have to wait). The IDSA Lyme tag line used to be "Hard to catch, easy to cure" That was as recent as three years ago, when they were claiming annual cases of Lyme in the US fell somewhere between 20,000 and 30,000. Since then they have had to revise those numbers tenfold, to over 300,000 cases of Lyme contracted in the US alone each and every year. And with some estimates upwards of 20% of infections unresolved by conventional treatment protocols, there is little routine about Lyme anymore.

    Considering the UK historically got much of its Lyme approaches from US protocols, I wouldn't be too confident in that. The problems with Lyme diagnostics extend beyond country boundaries, as do treatment limitations. Again, there is a reason the principal authors of the IDSA Lyme Guidelines are in court.

    :)
     
  16. Allele

    Allele Senior Member (Voting Rights)

    Messages:
    1,047
    Likes Received:
    9,133
    JE, I respectfully beg you not to throw everyone out with the bathwater because you don't like naturopathic medicine, which is very different in the US than in Europe.

    The other piece of your advice that might not be translating to the reality of US politics, is that the IDSA (Infectious disease Society of America) is a political entity on a par with the BPS crew's political and economic agenda--they categorically deny there is such a thing as long-term lyme disease, or treatment-resistant Lyme disease, and they have politico-economic ties that behoove them to maintain this position despite massive evidence that long-term Lyme disease is an epidemic here.

    I won't go into detail and take the thread off-topic, but as well-meaning as I trust you are, your advice may not be optimal if OP is in the States.
     
  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    2,785
    Likes Received:
    30,673
    I understand your concerns but I am afraid I doubt 'naturopathy' falls within science in any country. The ethos of this forum is to be science based as I understand it. And I don't think the issues of Lyme are different. I have no idea who IDSA are and am not really interested. I have given my advice as a physician with no axe to grind in relation to Lyme whatever. I actually think it would be better if Lyme was not discussed on an ME forum. It always raises political issues that are of no use to anyone. We have inherited the rule that we do not give medical advice. I would want to stick to that and recommend that the poster sees a recognised specialist in a standard medical centre.
     
    TrixieStix, Trish and Milo like this.
  18. duncan

    duncan Senior Member (Voting Rights)

    Messages:
    248
    Likes Received:
    863
    IDSA=Infectious Disease Society of America.

    The IDSA, either directly or indirectly, informed the UK's Lyme policy in a manner similar to which it helped shape the CDC's. If anyone wants to appreciate UK Lyme issues, learning the strengths and weaknesses of the IDSA Lyme Guidelines might be a good place to start.

    The OP is from western US, so my responses were directly relevant to him, as far as I could tell.

    As for whether a Lyme conversation may or may not be appropriate on an ME forum, I would suggest that any disease that jettisons perhaps 60,000 sick individual onto the streets annually in the US alone, many of whom end up with an ME/CFS diagnosis, deserves a rightful place in ME discourse from time to time.
     
    chfrazzel likes this.

Share This Page