Hi mergirl -
What you're experiencing w/ your regular MD is misinformation, nervousness, overlycautious... which unfortunately results in emphatic denial and more misinformation.
As Girlie mentioned reactions to bands 31 and 34 are so Lyme-specific, the two Lyme vaccines were created from them. The 31-kDa band represents the OSP-A protein and is specific for Borrelia, as is the 34 band OSP-B and 25 kDa OSP-C. You can't get much more POSITIVE for Lyme than reacting to bands 31 & 34. Indeterminate is a slight reaction.
This is why I share with people that these tests were developed for the CDC's surveillance purposes, which is how they track diseases. So, by the nature of the process, the tests are looking for a specific manifestation of the Bb microbe... but not ALL manifestations of the Bb microbe. Therefore, it's designed to be highly specific for that one type (or strain) of Lyme but not sensitive to all the other Bb infestations.
For this reason and a few others, even the CDC tells MDs that the tests should not be used as the sole diagnosis of Lyme - but that Lyme is a clinical diagnosis:"Surveillance case definitions establish uniform criteria for disease reporting and should not be used as the sole criteria for establishing clinical diagnoses, determining the standard of care necessary for a particular patient, setting guidelines for quality assurance, or providing standards for reimbursement." www.cdc.gov/lyme/stats/survfaq.html
> Prior to a 1994 NIH hearing to develop conformity amongst labs, every lab accepted bands 25, 31, and 34 as Lyme-specific and significant in diagnoses. Without any clear reasoning, during what has come to be known as the infamous 1994 Dearborn meeting, the NIH disqualified those bands from being reportable. The result was that what had been a fair good test had now become poor or even useless.1995 Rheumatology Conference in Texas. (1995 Rheumatology Symposia Abstract # 1254 Dr. Paul Fawcett et al.)
> The CDC's Lyme surveillance case definition includes specific requirements for certain "bands" to be present on the confirmatory western blot. However, two “lyme-specific” bands (kDa 31 and 34, or outer surface proteins—Osp A & Osp B) were excluded since they were used for the vaccines. Instead of simply screening people who had received the vaccine, these bands were removed from the testing for everyone so that people who had been vaccinated would not have falsely positive tests. And as Girlie mentioned, IGeneX DOES include these bands but it's still ignored in New York State.www.lymeneteurope.org/info/the-complexities-of-lyme-disease
And yet another reason your test falsely indicates negative:
For surveillance purposes, the CDC generated a list of bands a person could react to and determined a "CDC-positive" result would require a minimum of 5 of those bands on your IgG results and at least 2 bands for a positive result. These requirements aren't necessary for a positive Lyme diagnosis. In other words, not meeting these overly strict requirements doesn't mean you don't have Lyme. The requirements are highly specific,very strict and hard to meet because that's the entymological process involved in the surveillance methodology and reporting specific cases to the CDC, which allows CDC to track that specific manifestation across geographical regions. It's not for tracking all the possible manifestations of Bb - or diagnosing them or treating.
So tests results like yours that had fewer than 5 IgG or 2 IgM reactive bands on that list, even ia “Lyme-specific” band, will receive test results back from the labs with a “CDC negative” indication. Misinformed MDs then tell patients they couldn’t possibly have LD.
Another reason your test falsely indicates negative:
Generally, IgG indicates antibody responses to an old infection and IgM indicates a new or reactivated response to a current or recent problem. But with Lyme, the immune system just doesn't react like it normally does. Over 200 studies have shown that the Bb microbe has the ability to evade and/or disrupt normal immune function. This often makes it difficult for your body to create enough antibodies for the test to pick up and also makes these assumed immune reactions more unreliable.
So many people won't qualify for the CDC's surveillance criteria even if they might have the specific Bb manifestation the surveillance data is tracking, but because their immune system just isn't producing a strong enough response.
Hope this is helpful.
I agree w/ Girlie - you have all the info you need to continue treating. Next time you have a UTI or acne, your regular MD can help you out with all the abx you want. For now you're done with her and her bad info. In order to treat Lyme, you need your specialist.
LYME FORUM MODERATOR
Chronic late-stage lyme—likely infected in '98; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses, GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many supps; cholestyramine