I remember that there is a gal in CA who comes to this site sometimes who did the culture test several months ago. Her Lyme mimicked MS and she'd taken extended antibiotics for a while, then took a break. Symptoms were returning and so she went back to an LLMD. I seem to recall her culture test was surprisingly negative, but her Western Blot showed Lyme specific antibodies. She started antibiotics and had some painful herxing, so her culture seems to have been false negative.
Advanced Labs claims they accurately find it about 94% of the time using the blood of "known" Lyme patients, which is more accurate than any other test, but can still miss a few cases. It would be meaningful to me, but I expect mainstream docs to dismiss it as unproven. That's actually silly, as it's impossible to get a false positive on a culture test without contamination, which is incompetence. A negative culture isn't conclusive at all. It just means no bacteria grew in that culture at that time.
The problem with the CDC's definition of a "known" patient is someone who tested CDC positive on a Western Blot and had a known tick bite or rash and/or Lyme symptoms. I don't know the exact criteria required, but it's a combination of these things, and it's strict to ensure no false positives.
My concern about using this medical standard is that it is based on the most common New England presentation of Lyme that causes a bulls eye rash and produces certain combinations of antibodies. But what about other genetic strains in other regions that produce either no rash or a different rash and different combinations of antibodies and symptoms? What if these other regional strains are harder to culture? Or what if they prefer a different culture medium and are less likely to grow in the one used in this culture? We can't know, because the standard is narrowly defined.
Since the CDC interpretation of the Western Blot has never been validated in other parts of the country with greater genetic variation, let alone in other parts of the world with different species, how can we know that any test will work as well on other variations than it will on New England Lyme Borreliosis? If the "standard" represents only part of the whole picture, then everything based on it (testing, diagnostic requirements, treatment, inclusion in medical studies) will represent only a segment of patients.
(For example, the IDSA says that without a history of tick bite or erythema migrans, doctors should NOT order Lyme tests without symptoms of joint pain and muscle pain. I never had either. Their directions to doctors show complete contempt for patients like me, letting us descend into the hell of late state neuro Lyme rather than get $200 worth of tests.)
I have Australian Borreliosis and Babesia. I've been negative on multiple Lyme antibody tests and 3 Babesia tests in the U.S. The only signs of Lyme I showed were on the IGeneX Western Blot, which shows other non-CDC bands. The vast majority of Australian Lyme patients test false negative on the CDC protocol, but most show other Lyme specific bands at IGeneX, including Band 31 which IGeneX says is more common in neuro Lyme patients. The CDC ignores band 31. (Allen Steere, who developed the criteria, says it doesn't matter as it rarely shows up after early Lyme. He also says neuro symptoms are very rare. Australian Lyme is almost exclusively neuro Lyme.)
I am very curious to know if this culture test would have shown my infection before I started treatment. My antibody levels were quite low, suggesting few spirochetes in my blood. If after my treatment is done I ever develop symptoms again, I won't hesitate to get the culture test, but I will consider that a negative is only a maybe.
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