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Lyme Disease Question

Discussion in 'Lyme Disease and Co-Infections' started by Mitch, Oct 7, 2013.

  1. Mitch

    Mitch

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    Sorry, but I'm new here, and couldn't figure out quite where to put this question, so I'll ask it in the "General Forum".

    Can anyone tell me how it is determined whether you've had Lyme Disease or not? I know, it sounds like a stupid question, and may be, but I'm confused. Some things I read say that if any test comes back with a positive number, of ANY degree, then you've built Lyme antibodies, meaning you were infected at some point.

    Other sites suggest that the "titer" or number has to be above a certain level to be considered as positive.

    I guess my question comes from the little bits and snippets I've heard suggesting that "low-level" long-term infections with Lyme being one of the diseases, can be a factor in development of ME/CFS. Any help by pointing me to authoritative publications would be very appreciated, or if you have personal experience, I'd love to hear about that, too.

    Thanks!
  2. vamah

    vamah Senior Member

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    Lyme is, unfortunately, super hard to get a clear test result for. There are a lot of false negatives. I would interpret any antibodies as meaning you were exposed to the disease, but that doesn't mean you have an active infection. The test itself also makes a great deal of difference. The test that doctors will tell you is the "gold standard", is really only looking for the high antibody levels found in an active new infection. It is not sensitive enough to detect chronic infection -- which many doctors say doesn't exist anyway. Lyme is very good at hiding, so a specialty lab will do a lyme panel of tests to pick up various indicators that are indicative of chronic lyme.
  3. Esther12

    Esther12 Senior Member

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  4. Ema

    Ema Senior Member

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    Welcome Mitch!
    I had a Western blot done through IgeneX labs which is considered the gold standard by most Lyme literate MDs (LLMDs). If you have reactions on the bands that are specific for the Bb bacteria, it is likely that you have been exposed to Lyme. The decision of whether or not you have an active Lyme infection is based also on your history and symptoms. Many times the final decision comes by how well (or not) you respond to antibiotic treatment.

    There are other tests being used now as well like the lymphocyte tolerance test or the Infectolabs testing but the IgeneX is still by far the most common. The others are showing promise as well though.

    The typical Labcorp ELISA testing is worthless. This is the only type of testing that will return a titer value.

    I would say that many people with compromised immune systems such as found in ME/CFS will also fall prey to a variety of other opportunistic infections of which Lyme seems to be a common one. It has been my experience that relieving some of the burden on my malfunctioning immune sytem with antibiotics and antivirals to treat infection has been extremely helpful and worthwhile.

    Ema
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  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Mitch

    I agree with Ema re: testing. Often knowledgeable docs will do several types of testing as no one test is totally accurate. I had 3 types of testing for Borrelia and Bartonella plus CD 57. There are some new tests in the last couple of years that add a lot to the testing picture, and those results, plus symptoms and history make a diagnosis a lot more reliable than a few years ago.

    Sushi
  6. SickOfSickness

    SickOfSickness Senior Member

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    I read about some other lab being much better than IgeneX, but I don't remember where or what lab. It seems to be the new gold standard and IIRC people were saying IgeneX was a waste and not sensitive enough.

    A few Lyme docs will diagnose just on symptoms now, and disregard what lab results say.

    In my opinion antibiotics are too scary to take for months, so why would you need an MD to diagnose? I would look at the risk factors and symptoms and assume you have it, if there is a match.

    Particularly for anyone with years of ME/CFS, I believe we pick up many infections and don't get rid of them. So we could test positive for many and I wouldn't spend the money and time on the lab tests, unless you want prescription meds and think you can tolerate horrible herx reactions.
  7. Mitch

    Mitch

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    Thank you to all of you for your thoughtful responses. I'll consider them all as I move ahead. Thx!
  8. Ema

    Ema Senior Member

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    I'd like to see some elaboration on this because I've not heard of anything replacing IgeneX as the gold standard. The criticism has actually been that it returns too many positive tests, not that it was not sensitive enough, but that may be because the people who actually pursue an IgeneX test may be more certain that they have Lyme and follow up with a doctor more likely to use that lab.


    I've not found this to be my experience at all. Yes, an LLMD will occasionally make a diagnosis without a positive test if the symptoms all strongly suggest Lyme but I don't know any LLMDs that are forgoing testing altogether. Testing is not perfect but it is an important piece of the puzzle.

    Again, I disagree. Doctors have been prescribing long term antibiotics for many conditions, including acne which is much more benign (though certainly stressful!) than Lyme, for years and years.

    True, we pick up many infections as a population but in my experience, antibiotics and antivirals have greatly improved my quality of life. I think this is an important avenue to follow up on.

    Most LLMDs are not in favor of "horrible herx reactions" because this is hard on the body. Most LLMDs try to minimize herxing for their patients so that the treatment is tolerable, whether that means starting low and slow or backing off antibiotics if a reaction comes on. There are lots of ways to manage a herx and while none of it is fun, neither is suffering from an untreated infection for years.

    Ema
    cigana and SOC like this.

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