Welcome to the forum - I'm very sorry you're here but glad you found us. This site has a wealth of information for you and we're here to help. And based on your test scores, as Girlie explained, you are in the right place.
I love your mom - nothing more powerful than a mom on a mission. You're very lucky to have her support - if she has any questions or concerns please invite her to also join the forum and we'll be glad to have her.
I think it's VERY likely you've had Lyme since childhood. With as horrible as Lyme education is, as poorly prepared MDs are to understand how to recognize and diagnose, as inaccurate as Lyme testing is, the current epidemic was inevitable.
And my opinion is that most people DO carry the Borrelia burgdorferi Lyme microbe in their bodies, especially anyone who has lived in the NE over the past 20 yrs. Some people have genetic immunity to it, many people maintain a strong, healthy immune system that keeps dominance over it and they remain asymptomatic (until they don't). And most people who have developed Lyme disease from the presence of the microbe simply cannot get an accurate diagnosis. Those are the harsh realities that are being ignored by the system.
In a nutshell, studies show the testing is inaccurate as much as 50% of the time - which is unconscionable when Lyme is the fastest-growing vector-borne infectious disease in the country. There are two primary reasons why the testing is inaccurate:
- The testing was developed to confirm a specific manifestation or strain of the Borrelia microbe as part of the CDC disease surveillance criteria, not to diagnose Lyme disease. For entomological purposes, this surveillance criteria is geared towards targeting a specific type of Lyme, not to capture all cases of Lyme. In response, the CDC requires a high number of specific reactions to qualify for this surveillance process. Most people aren't going to meet that criteria--nor should they.
- The other main reason is that these tests are serology tests and they look for antibodies that your immune system creates to pathogens it finds, not the pathogens themselves. So the tests are dependent entirely upon a normally-functioning immune response to develop these antibodies. Not only are people very sick from Lyme with underfunctioning immune systems simply from being overwhelmed by Lyme, multiple coinfections that are common with Lyme infections and all of the other ways in which these infections overwhelm the body, but over 200 studies have shown that the Bb microbe can evade and/or disable the immune response, preventing adequate antibodies required for the tests.
You are most likely up against #1 - you have Lyme, but not the version the surveillance process is looking to identify.
Even the CDC states on its website very clearly (albeit somewhat hidden) that the tests should not be used solely for diagnosis - that Lyme is a clinical dx. From reading your test results, your exposure and your symptoms, even I, a complete stranger, can diagnose you as having Lyme. Many MDs either ignore or simply have no idea what the CDC recommends about
these tests:"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
Here's more info on why the testing is so inaccurate - lots of info:www.healingwell.com/community/default.aspx?f=30&m=3935096&g=3935763#m3935763
If that link doesn't work - try this one, my post is toward the bottom of the page:www.healingwell.com/community/default.aspx?f=30&m=3935096
I agree with Girlie that it's best to see a Lyme specialist - I can recommend an excellent LLMD in San Diego as well as a Lyme-knowledgeable neurologist - email me.
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