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Lyme Results - what do you make of my results ?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by kristysmiles, Oct 5, 2015.

  1. kristysmiles

    kristysmiles

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    Kaneohe, HI
    IGG BAND 28 Negative
    IGG BAND 30 Negative
    IGG BAND 39 Negative
    IGG BAND 41 Positive
    IGG BAND 45 Positive
    IGG BAND 58 Negative
    IGG BAND 66 Negative
    IGG BAND 93 Negative
    NOTE: LYME ANTIBODY (IgG) by WESTERN BLOT is considered to be positive if any 5
    out of the following 10 bands are present: 18, 23, 28, 30, 39, 41, 45, 58,
    66, 93 kDa.

    LYME IGG INTERPRETATION Negative
    IGM BAND 23 Negative
    IGM BAND 39 Negative
    IGM BAND 41 Negative
    NOTE: LYME ANTIBODY (IgM) by WESTERN BLOT is considered to be positive if any
    2 out of the following 3 bands are present: 23, 39, 41 kDa.

    LYME IGM INTERPRETATION Negative

    I'm positive for IGG Band 41 and 45. Just wondering what these results indicate. Clearly I don't meet the 5 out of 10 band criteria for lyme, but is it normal to have a few positive bands?
     
  2. Ema

    Ema Senior Member

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  3. Ema

    Ema Senior Member

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    This is the CDC criteria and they never meant for it to be used for diagnostic purposes even though people still continue to try to do so.
     
  4. kristysmiles

    kristysmiles

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    Kaneohe, HI
    @Ema, the lab test was done through my local provider. They did the Western Blot (above) and the ELISA which was negative. The ELISA was 0.25 with a reference range that's negative for < 0.91
     
  5. duncan

    duncan Senior Member

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    Were you stationed outside the US at all? Spend time overseas?
     
  6. Ema

    Ema Senior Member

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    So it wasn't IgeneX?

    The reason I ask is that typical labs only use one strain and have only the two categories you see above...positive and negative. IgeneX uses more strains and also reports bands as negative, positive and indeterminate which indicates some activity on a band but not quite enough to trip the positive. But most LLMDs believe that any activity on a band indicates exposure and should be considered as a positive as well.

    If you've had the testing done through a lab other than IgeneX and your symptoms strongly correlate to Lyme disease, I would consider talking to your doctor about repeating the test. The results from other labs simply aren't complete enough to be of much value.

    Lyme testing is only one facet of the clinical diagnosis anyway and symptoms can be as or more important in making a diagnosis.

    That said, neither band 41 or 45 is specific for Bb...41 can be any spirochete and 45 can cross react with Erlichia. So you don't really have enough to know whether or not to rule out Lyme as the cause of your symptoms, in my opinion.
     
  7. kristysmiles

    kristysmiles

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    @duncan, yes I've been to Iraq, Kuwait, Korea, and Japan.
     
  8. kristysmiles

    kristysmiles

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    @Ema, I just don't know if my insurance will pay for that testing. My doctor hasn't done a follow-up with my yet to go over the results. So I'll mention it to her. I might have to pay out of pocket. I imagine most doctors would not diagnosis lyme off my results, which is why I wanted to go to a lyme literate doctor, but haven't had much success with insurance and geographical location. I'm moving again this month, so I can't really get established with a doctor right now.
     
  9. Ema

    Ema Senior Member

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    Most insurance will cover IgneneX testing...even Medicare. Good luck!
     
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  10. duncan

    duncan Senior Member

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    If you think you may be symptomatic for Lyme, getting tested sounds prudent.

    Testing in the US typically is for only one species: Borrelia Burgdorferi sensu strictu.

    If you think there is a possibility you contracted Bb in Japan or Korea, then you may wish to be tested for two additional species, b afzelii and b garinii.

    But I don't believe you can just go to Labcorp and do a blood draw for those Lyme species. You might need to do it through an overseas testing facility, or have your clinician order the proper test for you. I'm not sure how this would work. People get infected overseas enough times that I think your clinician should be able to get access to the proper Bb tests. But I'm not clear on how it would play out.

    I am not familiar if there are species specific to Iraq or Kuwait.

    The bottom line is if your testing for Lyme excludes a species you may have been expose to, then you may wish to rethink your approach. I'm pretty sure the usual US B31 kit, calibrated for Bb sensu strictu, wont tell you if you've got garinii or afzelli, but I could be wrong. Check with your clinician.
     
    Last edited: Oct 6, 2015
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  11. msf

    msf Senior Member

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    B. Yangtze is common in E Asia, it is most closely related to B. Valaisiana, but there don´t seem to be commercial tests available for either.
     
    Last edited: Oct 6, 2015
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  12. sarah darwins

    sarah darwins I told you I was ill

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    Those doctors who accept the concept of chronic / persistent lyme would certainly want to look at some other markers. One of the classics is the CD57+ group of natural killer cells. Low CD57 is seen by some as a tell-tale indicator of chronic lyme infection (though not only that). If you've had that one tested, or can get it tested, a low value might be a reason to explore the possibility further.

    There are other tests (I'm too brain fogged to think which but others will know) that would give you similar clues.

    I'm only mentioning this because, having travelled to some far-off places, you've potentially been exposed to a great variety of strains, and trying to test for all the possibles directly could be an impossible task. Might be better to approach it from the other end, looking at a small number of parameters known to be common in chronic lyme patients. If they didn't look very 'lymey', you could move on.
     
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  13. kristysmiles

    kristysmiles

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    I saw an Infectious Disease Specialist last week. I'm not sure I'd trust his opinion, because he was saying the ELISA is a screening test, and patients should only be given the Western Blot of the ELISA is postive. From what I understand the ELISA is less than 30% accurate. He also wasn't familiar with Igenex. Based on my lab results he couldn't confirm or deny I had lyme disease, and wanted to try me on a 30-day trial treatment with Ceftin. I've only heard of doxycycline being used for lyme treatment, does anyone know if Ceftin is equally effective?
     
  14. soxfan

    soxfan Senior Member

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    I have had three Lyme tests done through Igenex and I had only band 41 very positive. The Lyme doctor told me that band 41 could indicate other infections and would not consider it a positive for Lyme. I also had positive ELISA but negative western blot.

    Doxycycline is usually the first choice as a antibiotic challenge to see if you react to it..meaning herx reaction( the bacteria being attacked by medication). I had 9 years of on and off treatment for Lyme. I still am not sure if I ever really had it.

    Also it's important to test for co infections as I did test positive for Bartonella.
     
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  15. Valentijn

    Valentijn Senior Member

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    @kristysmiles - Trialing an antibiotic which attacks Lyme can be an easy way to confirm diagnosis. When Lyme bacteria (or another spirochete) dies, it releases endotoxins. Those endotoxins are proven to trigger a very specific immune reaction, known as the Jarish-Herxheimer (herx) reaction. So if taking the antibiotic results in fevers and hypotension, etc, then there probably is a Lyme infection.

    Given the poor state of testing, it's a decent alternative to see what's going on. But a problem might arise when the doctor decides to stop giving antibiotics even if the reaction is ongoing, or if the doctor fails to antibiotics targeting Lyme in its different forms/stages.
     
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  16. msf

    msf Senior Member

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    Kristysmiles, do you think it may a kind of Gulf War Syndrome? I ask because there is a paper that shows that ME and Gulf War Syndrome are likely to have different causes. The paper mentioned flu shots (I think) as one of the possible causes for Gulf War Syndrome, and I was just wondering whether some of the possible causes are still present for soldiers serving in Iraq.
     
  17. kristysmiles

    kristysmiles

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    @msf It could be, but like chronic fatigue syndrome, no one knows what causes Gulf War Syndrome. I've heard about titanium dust particles in the air where I was deployed, exposure to burn pits, and other chemicals, as well as some local diseases that could all be contributing factors. The smallpox and anthrax vaccines are both required prior to deployment. So it could be any of the above.

    If I can convince my military doctors it's worth doing a trial treatment for lyme, we begin to rule out that possibility. It just angers me that there is so much questionable data about multiple medical conditions. Chronic Fatigue Syndrome or whatever they call it these days, is meant to be a diagnosis of exclusion, but other conditions aren't really excluded because the medical community is relying on inaccurate tests and procedures.
     
  18. msf

    msf Senior Member

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    Yup, it´s hard to make sense of all the opinions you hear. One of the authors of the paper I mentioned, Kenny de Meirleir, has said that Lyme is ME, so if he´s right it suggests that Lyme isn´t Gulf War Syndrome. So my suggestion was to look into both possibilities, if you are in a position to.
     
  19. JAH

    JAH Senior Member

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    Just wanted to add that other symptoms - headaches, fatigue, brain fog - can be considered die off. I specifically asked my llmd this question - do you need to have a fever, chills to be considered herxheimer - based on Valentijn's posts! And she said, no. My symptoms - crushing fatigue, inability to think, brain feeling like it's filled with a swarm of bees (that's a medical term) - she thinks are herxheimer.

    My experience with testing and treatment very similar to @soxfan, on and off treatments, no real results, no real conclusion as to whether I have Lyme. I believe I've been tested more and have had more negative tests. I've also been told to ignore band 41.

    Good luck, wish this were a more clear area of understanding, but you will get a lot of different opinions here, and with medical community, J
     
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  20. Valentijn

    Valentijn Senior Member

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    Well, a lot of people think a lot of different things are a Jarisch-Herxheimer reaction. But the actual definition frequently says otherwise :p Many antibiotics also cause side-effects, and I had quite a few of those as well.
     
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