Here is my response to someone's post last week about
which tests did or did not work to help people get diagnosed. I know this may be a lot for you to process right now; I'm trying to be detailed in order to help others sort through what I had to learn over the last few months. Lots of people here helped me in the early weeks of researching this...
As far as your experiences you've described, I wouldn't go with either doctor. Many of these doctors claim to be Lyme "specialists" but they seem dead-set on convincing all of us that chronic Lyme doesn't exist and that we are just making it all up. Get the recommendations for an LLMD, who will acknowledge that Lyme can be chronic AND that it can be diagnosed without a positive test result. Good luck, keep asking questions here, and keep us updated on your progress!
Posted 10/30/2014 2:23 AM (GMT -5)
For me, accuracy in diagnosis seems to be more about
which lab runs the test and who is interpreting it. I'd bet most people on this forum are going to say save yourself some time and request a test through Igenex Labs. See my experience below. I copied this from my other response to a different post.
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. I was still sick as a dog.
9.6.2014: Second test, second doctor, a highly regarded neurologist and Lyme specialist (but NOT an 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. Still sick, getting worse.
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.) Very dizzy & nauseous, having trouble walking, but thrilled to know what is wrong with me!!
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 will update this response and create an actual "signature" once my tests are complete. Only 2 weeks on meds and dizziness is almost completely gone, walking and even running are doable now.
What stands out to me from my experience is that some labs must have more sensitive testing procedures than others. It is also vital to have a doctor who is Lyme Literate and can recognize symptoms of it in the absence of a positive test result. It is just too common to get back a test that shows a false negative, sadly...
EDIT: Now that I've read others' experiences with LabCorp being seemingly unreliable (in my humble opinion) I am going to see if insurance will cover more testing for co-infections through Stony Brook Labs. If they won't I'm going to pay it out-of-pocket for co-infection testing at Igenex. I just want to be DONE with all this testing and be sure I've got all the right meds and a cohesive treatment plan. THANK YOU for asking this question!
Post Edited (mauihawaii) : 10/30/2014 12:41:29 AM (GMT-6)
Post Edited (mauihawaii) : 11/5/2014 10:09:57 AM (GMT-7)