Hi dpiddy, (Love the name!
I had your same test results--at first.
I'm also fairly new to all this and was just diagnosed two weeks ago. This forum should help you find lots of answers. It can be overwhelming in the beginning but everyone is very supportive
I've been sick since childhood but finally got really scarily sick about
3 months ago. I've seen multiple doctors since becoming an adult and being frequently sick. I've requested every test under the sun over the years, all of which came back "normal". This most recent scary sickness lasted a month and got terrible in the end of August, which led me to request the last test I could think of that I hadn't already taken, which was for Lyme.
8.26.2014: First test with first doctor, a general practitioner. Blood work was run through Sunrise Medical Labs, NY. They ran a full health workup (thyroid, metabolic panel, STDs, etc., PLUS the Western Blot)--every single test came back negative. She recommended that I see a neurologist for a benign brain tumor!! Then I found this HealingWell site and became absolutely sure I had Lyme based on everyone else's symptoms that I recognized in my own life.
9.6.2014: Second test, second doctor, a highly regarded neurologist and Lyme specialist (note that this does NOT mean LLMD), sent blood samples for Lyme & co-infecton testing to ARUP Labs, UT. Western Blot came back with just 23 K-Da positive. The doc was kind but dismissed this result as something I may have had in the past, possibly no longer had, said it was outside his area of expertise, and referred me to an infectious disease/Lyme doctor. I couldn't go because he doesn't accept insurance.
10.6.2014: Third test--this time a round of 3 tests--with third doc, a neurologist and VERY well-renowned specialist in Lyme (again, I learned the hard way that she is not an LLMD). She was quite attentive but at the end of an hour interview dismissed all my symptoms as me being "an overachiever who has migraines from stress coupled with a sleeping disorder". She dismissed the 23 kDa positive result from the last doctor's test as "insignificant". I waited for my results from this doc, hoping she would have to eat her words. (In the meantime I came back to this HealingWell forum for another referral, this time asking for recommendations for an LLMD who accepts insurance.) She ran the PCR and the C6 Peptide Abs through ARUP Labs, UT. They came back negative. She also ran a Western Blot test through Stony Brook Labs, NY. This came back POSITIVE!!
It showed 23 kDa & 41 on IgM and just 58 on IgG. The two bands on the IgM were enough to say that I am positive by CDC standards, and indicates a "recent" infection. This interpretation should be changed throughout the field of medicine to "active" infection. (My symptoms have been basically the same for 30 years, but getting much worse in the last 5 years. I am sure this has been an "active infection" all that time, and is not a recent infection.)
10.15.2014: Fourth test, fourth doc--this one recommended by others who've seen him--an infectious disease specialist and LLMD. Took the test results with me from the last doc. New doc (the LLMD) ran 19 more tests through LabCorp (since I told him we'd already used Stony Brook). Fortunately, they found no co-infections but they did find the gene mutations I posted questions about
today on the forum. This doc also requested more Lyme testing through Igenex Lab in CA. Waiting on those results now...
I wrote all this only to show you that this can be a long process for any of us who are new to this world. But, if your body has that 23 kDa antibody marker you have very likely encountered the Lyme bacteria, as that marker is considered to be quite specific to Lyme antibodies. You will learn from this site that many of us need multiple tests before getting a confirmation of the diagnosis. One reason (of many reasons) is because most of the insurance-approved testing labs use tests that aren't very sensitive, as you can see from my tests that were run back-to-back-to-back at various labs across the country. Some will be diagnosed with Lyme without a positive test result but based on symptoms alone and ruling out other possibilities.
I'm praying for you--I really hope you are able to get some relief soon! Stick with it, and good luck!
Maui