The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
Discuss the article on the Forums.

Treated for possible lyme

Discussion in 'ME/CFS Doctors' started by dga5000, Dec 9, 2014.

  1. dga5000

    dga5000

    Messages:
    24
    Likes:
    30
    Hi everyone. I've just got back from visiting a specialist. We discussed my recent results (see below) and he is convinced I have now entered the late stage of an inflammatory disorder and that it is now critical that we get to the virus / bacterial problem that is causing it. So far I have tested negative for all the lyme related tests but did test positive for Yersinia. He's still convinced I have lyme or a lyme related bug and has ordered a SPOT test (whatever that is?) and some tests for other co-infections.

    He's convinced I will need to start IV antibiotics next year. I'm wondering if anyone from the UK has had any joy setting this up. I'm not expecting much joy from the NHS but am trying to weigh up the costs / possibility of doing it privately?
     
    Last edited: Dec 10, 2014
    Hanna and cigana like this.
  2. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,227
    Likes:
    31,871
    Dear dga5000,
    Did you get a C reactive protein level?
     
  3. xrunner

    xrunner Senior Member

    Messages:
    843
    Likes:
    680
    Surrey
    Hi Dan,
    IV treatment for Lyme is available at the Breakspear. It's usually expensive but you can strip costs down by eliminating a few "accessories".
    When I was treated, I was intolerant to Rocephin so my only option were oral antibiotics which worked well for me.
    If you have never had any prior treatment, or treatment failure on oral abx, you may want to try this cheaper option first and see how it works out for you. Best wishes.
     
    Valentijn likes this.
  4. msf

    msf Senior Member

    Messages:
    3,188
    Likes:
    4,454
    Hi Dan,

    I'm really glad you posted (not glad your ill), because I am in a similar boat to you...I also tested positive for Yersinia, but have tested negative so far for Lyme (there was one possible positive on the Western Blot, but the LTT (similar to the SPOT, I think) was negative). I would be interested to know whether you were positive by both IgG and IgA for Yersinia (I was, and this was almost certainly the trigger in my case). I don't know, but I imagine he might suspect Lyme even more in your case because your cytokine levels are higher than mine (the only one of mine that was raised was the IL-8S, but it was only 100). On the other hand, my VEGF was very low (0.19) and my CD57 count was also lower than yours (35), so maybe my infection is more active? Who knows? These are just speculations obviously, but I'd be interested to know how long you've been ill for (in a couple of weeks it will be my one-year anniversary!).

    I don't know about the treatment sorry, but if I needed IV I think I would go to Brussels and stay in someone's house (the cheapest accommodation option), but don't tell them you have Yersinia or they might put a cross on your door! (Yersinia Enterolitica and Pseudotuberculosis are cousins of the Yersinia Pestis, i.e. the Black Death). I have spent quite a while finding out about Yersinia Enterocolitica, so if you want any suggestions for reading, just ask. If you just want an overview of how this differs from Lyme, this article is pretty helpful, if only because it points out that they are difficult even for experts to tell apart (hence the SPOT, I imagine).

    (http://www.ncbi.nlm.nih.gov/pubmed/23400696

    I know another of KDM's patients who also has Yersinia (plus Lyme), I can give her your contact details if you like, she might be able to fill you in on treatments, etc.
     
    Helen and dga5000 like this.
  5. msf

    msf Senior Member

    Messages:
    3,188
    Likes:
    4,454
    Oops, I just realised I used brackets in brackets (or ellipses in ellipses if you're a North American).
     
    dga5000 likes this.
  6. cigana

    cigana Senior Member

    Messages:
    970
    Likes:
    782
    UK
    @dga5000 @msf Welcome to the high IL-8 club.
    Every patient I know who has had IL-8 tested by Redlabs have a high result (see my post summarising here). I really wish someone could look into this!

    EDIT: I summarised this in a blog post
     
    Last edited: Dec 10, 2014
    dga5000, Hanna and Sidereal like this.
  7. msf

    msf Senior Member

    Messages:
    3,188
    Likes:
    4,454
    I've just read your blog, and it is an interesting finding, but Yersinia can cause it too, so it doesn't seem to be specific in that way. I guess it could be a marker (or suggestive of) infection, but I don't think that much research has been done into this (hopefully I'm wrong about this).
     
    cigana and dga5000 like this.
  8. dga5000

    dga5000

    Messages:
    24
    Likes:
    30
    Hi Jonathan. I've just scanned through all my results for the last 8 years and evidently I have not been tested for it. I was convinced I had been. What does C-Reative Protein measure?
     
  9. dga5000

    dga5000

    Messages:
    24
    Likes:
    30
    Thanks for the heads-up on the IL-8s blog post. All my IL-8s results were done by Redlabs. They started slightly out of range in 2011 (33.9) and then jumped in 2014 (8192)
     
    cigana likes this.
  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,227
    Likes:
    31,871
    Inflammation.

    I realise that I am a 'conventional' doctor in the sense of having been employed by a university department to work in a government healthcare system. However, I would at least claim to have been a fairly controversial maverick within that system. You were talking about getting antibiotics in the UK so I was thinking through what would give you a ticket to getting that reasonably simply. So here's my thinking:

    I spent thirty five years mostly dealing with an inflammatory disease - RA - and for the last twenty five we used the CRP as our basic test for inflammation. It has some quirks but it seems to be a very good indicator of inflammation mediated by interleukin-6. That makes sense because CRP is one of a group of proteins produced specifically and only in response to IL-6 levels in the liver. It might miss IL-6 confined to local tissues but if the IL-6 is circulating through the liver it should shoot up. Chronic bacterial infections are almost always associated with a raised CRP (not viruses) and so a raised CRP is the most basic screening test for chronic infection in any hospital medical department.

    So what worried me about your set of tests is that although you have an IL-6 level, there is no CRP, which costs a tenth of the price I suspect. Moreover, IL-6 levels are so difficult to interpret even in a disease that is almost totally dependent on IL-6 (RA symptoms often disappear completely on IL-6 blockade) that I never bothered to ask for one. So why was an IL-6 assay done and not a CRP, which would be a much more reliable indicator of too much active IL-6? If you had a raised CRP then any infectious disease unit in an NHS hospital would agree that you needed some antibiotics and organised it free of charge - assuming it was clear what the bacterium was, and that seems to be in doubt so far.

    What worries me further is that an IL-6 level of this sort is very hard to understand in the context we seem to be considering. Moreover, the very high IL-8 level seems surprising. We then add to this the fact that it seems that everybody's IL-8 level is sky high from this lab. If it were me I would want some simple confirmation that these results are significant - and that could not be easier than getting a CRP done through a standard hospital lab. If it is sky high then any UK infectious disease physician will take it seriously. If it not then I cannot understand what the IL-6 level can mean because your body would be completely ignoring it.
     
    JaimeS, Hanna, merylg and 3 others like this.
  11. dga5000

    dga5000

    Messages:
    24
    Likes:
    30
    Thanks so much for your post. It really was very enlightening. With my somewhat tired brain I'm not going to pretend I could take it all in!

    Having done a bit more research it's clear that my IL-8s has not always been high through Redlabs but has increased over the years.

    Secondly, I've made a mistake! I have been tested from C-Reactive Protein. I didn't look for the shorter acronym CRP. De Meirleir has tested me three times and each time it has come back normal.

    I've no idea why CRP is normal and IL-6s is raised. I'm afraid my scientific knowledge reached it's limits at this stage. I did however do some research this afternoon and looked at some journal articles. A number of the articles concerned people presenting to hospital having both symptoms and a positive diagnosis of lyme. A number of the reports made special note of the fact that CRP levels in these patients were normal. I've know idea why this would be the case.
     
    merylg likes this.
  12. dga5000

    dga5000

    Messages:
    24
    Likes:
    30
    MSF - thanks for your post. It really is great to hear from people in a similar position to you. My Yersinia results were positive for IgG but negative for IgA. If you could enlighten me on the difference between the two that would be great!

    I'm sorry to hear you are coming up to your one year anniversary. I'm afraid I've been ill well over a decade now and much like my birthdays I've now stopped counting now!

    Have you started any treatment yet? Any improvement? I'd love to have the contact details of the person you mentioned.
     
  13. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,227
    Likes:
    31,871
    I think the bottom line is that if the CRP is normal, when the CRP is the body's own 'IL-6 assay' then the IL-6 level you have been given is pretty uninterpretable. If that is the evidence for inflammation, I would worry, since it doesn't add up. There may still be local inflammation but the IL-6 level does not look to me to be a useful guide to that.
     
  14. snowathlete

    snowathlete

    Messages:
    3,312
    Likes:
    14,610
    UK
    When I saw KDM at the start of 2013 my IL-6 was 483.7 (norm range 0-5) and my CRP was 1 (norm range 0-10) I had also had that tested many times under the NHS and it was always normal.

    By the time I had been on abx ten months (I then gave them up) IL-6 had normalized to 2, as had most of my markers, except PGE2 and IL-8.

    I asked the NHS to run an IL-6 test (so that I could confirm that the test was sound) but they wouldn't. Bearing in mind that my IL-6 dropped into normal range but I didn't get any better, I'd have to agree that it can't have been that important a measure. (at least in my case.)
     
    Last edited: Dec 10, 2014
    Hanna and dga5000 like this.
  15. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,227
    Likes:
    31,871
    Interesting, Snowathlete. You would not get an IL-6 test on the NHS probably because it is not considered reliable enough to tell us anything. Looking on the net the advertised kits are 'Not for diagnostic use'. Many people would consider the gold standard test for the significance of a level of a signalling molecule to be a bioassay of a response to the signals. The CRP is in a sense just that: a personal bioassay within the individual of the significance of an IL-6 level. If the CRP is normal the IL-6 is not doing much.

    It seems to me that the only way to make sense of this is for all labs involved to send each other blinded samples to ensure quality control. Maybe that happens but I doubt there is any incentive for a commercial lab.
     
    JaimeS, rosie26, Hanna and 1 other person like this.
  16. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,328
    Likes:
    21,475
    Albuquerque
    Not everybody. My first IL 8 from Redlabs was in the normal range. I know some others who had normal IL 8 tests from Redlabs also. Mine later began to climb when I was treated for infections. I am waiting on the results of more recent testing and it will be interesting to see. My CRP has always been normal.

    Sushi
     
    JaimeS, Hanna, dga5000 and 2 others like this.
  17. msf

    msf Senior Member

    Messages:
    3,188
    Likes:
    4,454
    I don't understand all the statistical stuff, but in this metastudy CRP had a sensitivity for bacterial infection of 75 %, and PCT had a sensitivity of 88%. I guess the question then would be what was considered a significant level of CRP and PRT in these studies, and whether the sensitivity would have been higher if this was lower.

    http://cid.oxfordjournals.org/content/39/2/206.full

    I also couldn't find much about CRP in chronic infection, but this study found that its usefulness was limited in tuberculosis patients:

    http://www.ncbi.nlm.nih.gov/pubmed/15168438

    Although in this one the CRP seemed to correlate with disease severity (TB again):

    http://www.scirp.org/journal/PaperInformation.aspx?PaperID=24387
     
  18. msf

    msf Senior Member

    Messages:
    3,188
    Likes:
    4,454
    RE: Yersinia IgG and IgA, IgA has been shown to correlate with Reactive Arthritis (which can be triggered by Yersinia). Some people (KDM included) think this is because the patient is still infected, since IgA doesn't last in the body very long (apparently). Since this is negative in your case, I believe KDM suspects that another infection (an active one) is to blame for your symptoms (or at least some of them).
     
  19. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,811
    My CRP tested high once, and at the high end of normal later. ESR has been consistently high since I got sick. Not really useful, since the internist and my GP didn't do anything about them or look into it further.
     
    JaimeS likes this.
  20. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,227
    Likes:
    31,871
    The first study seems to be about differentiating infective from non-infective inflammation, where CRP will not be very good because it picks up non-infective inflammation like RA. I did not see how they judged the discrimination but presumably not on the basis of the normal upper limit. In fact the normal upper limit should really be 3, although labs tend to say 5 or 10. That is because minor problems putting the CRP up to 5 are so common they more or less count as normal I think. I always used to think that a reading above 3 needed some sort of explanation. I would not be surprised if people coughing up TB had normal CRP because this can be very local. The real point I was making was that if the evidence for inflammation was raised IL-6 then there ought to be a raised CRP because that is how the body measures IL-6. Although they are uncommon there are situations where infection can be present without CRP rise but then you would not expect IL-6 to rise either. You wouldn't expect to feel lousy either, I guess, since feeling lousy goes with the cytokines and CRP. People who cough up TB can often feel perfectly well - as for typhoid carriers etc.
     
    dga5000 likes this.

See more popular forum discussions.

Share This Page