Posted 7/6/2020 2:35 PM (GMT -6)
Hi, Juneka, and welcome to the forum.
Keep in mind that Lyme is a clinical diagnosis, meaning based on signs and symptoms in addition to testing, and the diagnosis needs to be made my someone with Lyme experience, called an LLMD (Lyme-literate medical doctor). Western Blot Lyme tests (including the good specialty labs) look for antibodies, and Lyme thrives by disabling the parts of the immune system that make antibodies, so there are a lot of false negative tests. PCR tests (DNA ConneXions) also can produce false negatives if the sample taken simply happens not to contain any DNA of the infections at that moment. This is why testing is considered so unreliable.
In addition, there are many strains of tick-borne diseases that cause similar symptoms and require similar treatments, but tests don't look for all of them. (For example, classic Lyme disease is Borrelia bergdorferi and that's what most tests look for, but you could have basically the same disease from Borrelia hermsii, Borrelia myamotoi, and dozens of other Borrelia strains!) This level of complexity is why it's important to see a Lyme doctor (LLMD), as other doctors simply lack the training t be helpful with this disease. Autoimmune and autonomic nervous system issues are common with tick-borne disease.
If you would like help finding an LLMD near you, then start a separate post titled, "LLMD Near [your city]" and contact ILADS for recommendations. I also have had good luck doing a Google Maps "search nearby" search for "holistic" or "functional medicine" or "integrative medicine," and then asking by phone if folks have Lyme experience. Good luck, and feel free to ask questions here anytime!
My testing history is messy, which is the case for a lot of us. No history of a known bite or bullseye rash. Years of disabling and scary symptoms, eventually tested for Borrelia bergdorferi with standard ELISA test, negative several times. Negative Western blots, including IGeneX. Finally found an LLMD who tested me through LabCorp for a wide variety of co-infections (including multiple species of Borrelia, Bartonella, and babesia, as well as viruses). Positive results for Borrelia hermsii, mycoplasma, and Epstein-Barr virus made my LLMD confident that I was dealing with tick-borne disease (though of course he knew that these three were not the only ones I had, due to the unreliability of testing). My high c4a, low CD57, and other tests also indicated Lyme and related co-infections. A year later, a different LLMD suggested the DNA ConneXions test, which he prefers because it bypasses the immune system (does not rely on a Lyme-addled immune system to produce antibodies) by looking for shed DNA. That shed more light on which strains of infections I had. Two years after that, when I was doing better thanks to treatment and my immune system was working more normally, I finally tested positive on a run-of-the-mill Western blot for Borrelia bergdorferi. I'm very grateful that I had LLMDs who knew the limitations of testing!