It IS all confusing. We have valid, fairly accurate testing for many things, but not Borreliosis (Lyme).
Why? The tests that we are currently using were developed only for tracking the spread of the disease, not for diagnosing the disease, so it has a VERY narrow definition. As a matter of fact, out of over 100 strains of Borrelia (Lyme) that are KNOWN to cause human illness, the tests will only turn positive if a person has 1 of 2 strains - so that leaves 98 other strains that we can be ill from and not get a fully CDC positive test on. Those two strains are Borrelia burgdorferi and Borrelia mayotonii.
As the others have mentioned, a person can get a positive test after they have developed chronic Lyme (IF they have one of those two strains mentioned above), but it usually takes something to kill the bacteria, as those tests all rely on antibodies produced by the immune system. It took a full year of abx before I tested fully CDC positive because my immune system simply couldn't produce the antibodies any longer. I had been infected for 37 years by then.
The Borrelia bacteria is one of only a few known bacteria that can suppress the immune system to this point. Once it is injected into the skin, the first order of business for it is to leave the skin and get into the bloodstream, which it does quickly due to it's spiral shape. From there, it leaves the bloodstream rather quickly and goes into tissues.
Not only can this bacteria suppress the immune function, though, it can also stay in the tissues and out of the bloodstream - although it must be in the bloodstream to replicate, and this is where we can kill it.
The immune system rarely makes antibodies in the CSF(spinal fluid), so a spinal tap to look for antibodies is not only dangerous, but rarely are antibodies found.
If I understand which new blood culture tests you are speaking of, they are still looking for antibodies, but it's T cells, not B cells - and that's about
as far as I got in understanding it.
We actually do have a really superior test, called a DNA probe, but the project can't get the funding needed to produce these DNA probes, or to pay for the training that would be needed to use it. But it does exist and has been proven to be far superior to original blood culture tests, as the doctor would no longer be trying to see if the immune system was responding to the bacteria, but looking directly for the bacteria. This probe has been proven to be accurate in the lab many times over at this point.
If you have a doctor that is willing to still treat you without a positive test, that would be your best bet, for as you have realized, the steroid use will mess with those tests for a while yet. Weaning off of steroids safely so you don't have a rebound event, can take a bit of time. You can hopefully get a positive test later on, if you need one.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)