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Testing Negative for Lyme - Could It Be A False Negative?

Discussion in 'Lyme Disease and Co-Infections' started by Wayne, Mar 1, 2011.

  1. Wayne

    Wayne Senior Member

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    Testing Negative for Lyme - Could It Be A False Negative?

    I ran across an article today on Lyme that I thought was very good (I have Lyme). I was struck by the following comments on tests that rely on finding Lyme antibodies:

    Since most of us have compromised immune systems, it would seem to make sense to be suspicious of any false negative tests we may have gotten, especially if we present with strong clinical symptoms for Lyme.

    The entire article:


    "Treating Lyme Disease
    It's Much More Than Killing the Bugs
    Three Essential Keys to Your Recovery
    "

    I had heard of both false positives and negatives for Lyme tests, but had never understood the reason why there can be false negatives. This seems to be one of the reasons.

    Best, Wayne
    roxie60 likes this.
  2. glenp

    glenp "and this too shall pass"

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    TY Wayne

    Thank you for posting this Wayne. I have always tested negative - but always wonder

    glen
  3. lucy

    lucy Senior Member

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    I was thinking the same. Last time I had a cold (got it from the bf, he caught it first), it went very slowly (normal course for me used to be 4-7 days).

    It started with sore throat, painful gums, but the mucus in the nose started to be produced only after a week and in very small amounts, seems to be still in progress. I thought this pictures how my immune system is working, about 1/5 of normal speed or strength. Then any tests which count antibodies, are useless, I do not have any antibodies (except autoantibodies, re. recent tests).

    But then the PCR results maybe are not affected by low immune system?
  4. Timaca

    Timaca Senior Member

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    Lyme testing isn't particularly accurate. I have had my blood drawn and sent to 3 different lyme labs on the same day. The western blots all came back with different bands showing up at the different labs. You would guess that I'd test positive for the same bands with blood drawn on the same day. Not the case.

    However, while I do believe I have a chronic bacterial pathogen (whether that is borellia or Cpn or another pathogen is debateable), it is clear that I also have chronic viral infections.

    My current approach is test for lots of pathogens, and treat what looks to be most obviously wrong.

    Here's some info that might help: http://chronicfatigue.stanford.edu/

    Best, Timaca
  5. kday

    kday Senior Member

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    Hi Timaca,

    This has been my approach, and it has helped me a lot.

    I've learned to develop a sense of intuition instead of relying on tests. This has worked out for me well.

    It's not clear that I have viral infections either, but it's very clear that I have bacterial infections. However, I fit the CFS definitions perfectly. Including very poor VO2 tests, low NK cells, etc.

    Maybe it's not the ideal approach, but until the underlying cause(s) can be treated (retrovirus?), this will be my approach. Also, if you are infected with all the gram-negative (inflammatory) pathogens I am infected with, I don't see how one could survive true immune reconstitution anyway.

    Also, Dr. Montoya will be speaking at Stanford on March 3. It is free to attend.

    http://healthlibrary.stanford.edu/lectures/index.html
  6. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    One thing that I wonder about is related to the hyperreactivity that I and some others know that we have toward mold toxins, cyanobacteria toxins and other biotoxins.

    Wouldn't that hyperreactivity likely extend to the biotoxins that borrelia creates? Shoemaker says that they are very similar.

    If that's the case, then it would make sense that the Lyme would be problems for us even though we didn't have enough of the bugs to show up on tests.

    Maybe until we eliminate every last spirochete and cyst, the tiny amounts of toxin released still have an impact on us.

    That would be consistent with my own experience anyway.

    Best, Lisa
  7. Timaca

    Timaca Senior Member

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    kday~
    Thanks for the info on Dr. Montoya's talk. Wish I lived near Stanford!!!

    Best, Timaca
  8. anciendaze

    anciendaze Senior Member

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    If you check professional literature, you may see that the culprit behind Lyme disease is now borrelia burgdorferi sensu latu. For those who don't normally read Latin, those last words mean "in a broad sense", as opposed to sensu stricto, "in a strict sense". All the commonly considered causes of borreliosis are spirochetes of genus borrelia. If you don't have them, you could still have babesiosis or bartonellosis, etc. Only a minority of patients show the classic signs when first infected. After a decade or two, there's no telling what may result. Going to a typical PCP isn't going to get you a thorough check.

    At present even good doctors with good labs can fail to recognize some manifestations.
  9. paclabman

    paclabman

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    False negatives can come from several sources. Often only the ELISA test is done and it is well known to miss many cases of Lyme. A suppressed immune system can make it difficult to produce antibodies that will show up on a Western Blot. Lyme is good at hiding from the immune system because, when it's under stress, it can hide inside of your cells (L form) or form a cyst. Plus some labs are better than others (IGENEX has a good rep). Then there is the question of the criteria used to decide if it's positive or negative.

    Many Drs still use the CDC criteria even though the CDC itself says it was only intended as a tacking critiera. Others - like IGENEX - have developed their own criteria that look for Lyme specific bands. The CDC criteria doesn't even include the two bands that were used for experimental vaccines. Needless to say, always get your lab results. The presence of even one Lyme specific band should be investigated.

    And then there is also the same thing with Lyme as there is with ME/CFS. There are narrow minded, arbitrary people who "don't believe in it", "we don't have it here", or are simply dismissive and arbitrarily rule the test a "false positive". No explanation given as to how those Lyme specific bands got there. Lyme, unfortunately, is a political disease. Plus connections of Drs consulting for ins. cos. etc etc.

    To show how bad it is, I know one person who had the recurring bullseye rash form of the disease. Very definitive for Lyme. He went to the head of Dermatology at the med school here and he could not diagnose Lyme.

    I often read on the forum here how people say, "if only we had a test ..". But it's not as easy as that. Many people with positive Lyme test results are talked down to and dismissed.

    Real false positive tests are rare because labs like IGENEX look for Lyme specific bands. Nothing else causes those bands.

    Sorry to go off on this, but the plight of Lyme people is very similar to that of ME/CFS people.

    Some people with Lyme do end up with ME/CFS or fibro. For an interesting read on cytokine activation and how it can persist after the infection is gone:

    http://cait.cpmc.columbia.edu:88/de...-central-nervous-system-Lyme-disease_2009.pdf

    Unfortunately, I suspect that cleaning up what may be left of my Lyme and Cpn infections will not make my tender points go away, raise my low (moderate to severe) anaerobic threshold, or give a big improvement in overall functioning.

    The paper referenced above is very good. I was a little surprised that there was no discussion of the antibotics that are effective at breaking down biofilms (Flagyl, Tindamax).
    Lotus97 likes this.
  10. anciendaze

    anciendaze Senior Member

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    The mysterious autoimmune disease would become much easier to explain if an undetected retrovirus remained behind. One cohort of 'chronic Lyme patients' tested 100% XMRV+.
  11. Linksey

    Linksey

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    I have been negitive two times over the years, not sure what test other than for Lyme. My doctor just ran a few more test this week, I will get the results soon. I have had CFS/Fibro for almost 20 years. Five years ago I was bitten by a tick, showed a bulls eye rash, went to the doctor, (at the time my CFS/Fibro was somewhat undercontrol) The doctor said since I didn't have fever and TN didn't have Lyme then I would be fine. I believed him and went on not looking back until, XMRV talk about Lyme. Then I thought, that's it, that explains the difference in my last 5 years.
    The last five years I have been home/bed bound and what stands out to be different in my illness is all of a sudden I am in terrible arthritis pain. I have it everywhere! Hands, fingers, shoulders, wrist, elbows, knees, feet, add what ever else I have forgot to the list.
    I didn't have that before. I hope my test prove me right and is positive for Lyme but either way I am seeing a Lyme specialist on the 23 and hoping to be treated right away. From what I understand, if you have the bulls eye rash you have Lyme. ??? I will know more on the 23rd. I got this doctor off of a Lyme group like this one so he is known to be a good doctor for Lyme and takes insurance. For back up I have a nother doctor lined in to see in April but he does not take insurance and was booked out.
    Things have been bad the last 20 years, fatigue, pain, brain fog all the CFS things, not able to work. But again, the last 5 years I have been "suffering" almost everyday. Without pain meds I would have to say I don't know how I would be able to go on.
  12. Timaca

    Timaca Senior Member

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    A bulls eye rash is diagnostic for Lyme disease. However, ticks can carry other pathogens too, so be sure to be tested for those: http://www.columbia-lyme.org/ (Look under patients and click on "other tick borne diseases". However, since you had CFS prior to the tick bite you might have other things going on too. Check out this website: http://chronicfatigue.stanford.edu/

    Best, Timaca
  13. FunkOdyssey

    FunkOdyssey Senior Member

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    Yep, I think this is what is really going on with chronic Lyme. The percentage of lyme patients who go on to develop chronic lyme or post lyme disease syndrome after treatment is roughly 5% which is, I'm sure not coincidentally, roughly the same percentage of the population who are infected with XMRV.

    As someone who tested positive for Lyme via Igenex, and treated with high doses of antibiotics and multiple combinations of antibiotics for years, I can tell you that wasn't the answer for me or for many other people. Didn't make any lasting dent in my symptoms. The only lasting effects I have to show for my efforts are some new gut problems. For some people, they do improve a bit, but only to a modest plateau. Full recovery is rare.

    This phenomenon was finally explained for me personally when I turned up XMRV positive via VIPdx (like so many others with Chronic Lyme do).

    The symptoms of chronic Lyme and ME/CFS are the same. The low CD57 count that was supposed to indicate chronic Lyme actually is better associated with XMRV infection. Nearly everyone with chronic Lyme who runs the xmrv test turns up positive.

    I feel like going over to the Lyme forums and shouting "hey guys, you aren't getting better because most of you have XMRV" but I think it would fall on deaf ears.

    The issue is complicated by the fact that the antibiotics used to treat Lyme have anti-inflammatory effects that would be expected to improve symptoms and maybe even health outcomes in XMRV ME/CFS. So even if they do help somewhat, is it because you are killing Lyme? There's really no way to be certain.
  14. svetoslav80

    svetoslav80 Senior Member

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    If you've not taken antibiotics or steroids prior to testing, and are negative on either Elisa or Western blot, I consider this quite accurate that you don't have lyme. Could you post your results from all the 3 labs? There is controversy if certain bands are "fingerprints" for borelia or not. So different labs may or may not include them in the test.
  15. Timaca

    Timaca Senior Member

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    For example:
    Igenex IgM: 23-25, 34, 39, 58, 66, 83-93 +
    30 ++
    IgG: 41

    Stonybrook: IgM: 18, 60 (Negative) IgG: 30 (Indeterminate)

    MDL: IgM no bands IgG 28.

    As you can see, the lab results don't match up from lab to lab.

    If you look at my Stonybrook results over the years I've tested positive for these bands:
    IgM: 18, 34, 37, 45, 60, 93
    IgG: 29, 30, 41, 43, 45

    Best, Timaca
  16. SickOfSickness

    SickOfSickness Senior Member

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    I tested neg but may have it. Don't many LLMDs treat patients even if they test neg? If the patient has plenty of symptoms and other factors, like being in the woods on a camping trip before getting sick.
  17. Timaca

    Timaca Senior Member

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    The problem with treating clinically for Lyme is that Lyme symptoms can be the same as other illnesses such as chronic viral infections. So you may be taking antibiotics and they won't help at all because you don't have a bacterial infection. Or perhaps you have babesia and not Lyme.

    That's why it seems prudent to test for as many things as you can think of and treat what looks to be most obviously wrong.

    Best, Timaca
  18. svetoslav80

    svetoslav80 Senior Member

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    Very interesting Timaca. According to this site your Igenex test is positive (if you're from US), and the other 3 tests are all negative.

    But more important is that you had different results for one and the same bands with the same blood. Which sucks. They say there's a new test which cultures Borelia instead of testing for antnibodies, but I don't know how reliable it is, and it costs ... $700. See this thread if you like - http://forums.phoenixrising.me/showthread.php?14236-New-Lyme-disease-culture-test-now-available!
  19. soxfan

    soxfan Senior Member

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    I have had 3 tests for Lyme all from Igenex (at different times) and everytime there were different band that showed either IND or + . I realize these were done months apart but still seems a little strange. I also had the Elisa done and came up positive. When sent to another lab it showed negative. I am the same with Igenex in that I have tested IND for about 8 or 9 different bands but always 41+++.
  20. madietodd

    madietodd Senior Member

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    My naturopath wants to test for lyme. I found a test from 1999, done by SmithKline Beecham, which came up negative on IGG and IGM. Western blot was also negative, showing bands 93,41, 28 KD (what does "KD" mean?).

    Have tests improved enough that I should get the Igenex test done? If it comes up positive, I would have to go to a specialist for the antibiotics, all paid for by me (lousy healthy insurance). And then I'm at risk for all those gut issues; I'm already in barely OK shape there. And it sounds like that might not help anyway.

    Meanwhile, I did get the test he ordered for "co-infections"; I was too brain dead at that point to ask for a list of what was covered.

    And then if I test negative, I don't know if that's accurate - for $410.00.

    Advice, please!

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