How many times tested?

I was wondering how many times you all have been tested before you got a positive result.
Either WB, Elisa, AB / CDC or IGENX?

[wonko]

Tested several times by ELISA, ahad spinal fluid tested for Lyme, and I've had 3 Igenex western blots.  No CDC positive results for Lyme.

I did, however, get much better with treatment based on a clinical diagnosis through an ILADS LLMD.

[gibsongal]

thanks wonko

[JackieCalifornia]

I had a mildly positive Western blot (can't locate the lab results at the moment) almost a year after I got sick, and then went to an LLMD for follow up, after the doc who ran the first test said I wasn't sick enough to actually have Lyme, and never mind the positive test result.  

===============================================

The LLMD's tests were

-- POSITIVE for babesia

-- negative for bartonella and Ehrlichiosis

-- NEGATIVE for Lyme, under CDC/NYC standards, but POSITIVE on the following Lyme-specific bands:  

IGM (appears soon after infection):  

band 18 (+)                                ==>  highly specific to Lyme
band 23-25 (indeterminate = IND) ==>  specific to Lyme
band 30 (+)                                ==>  unknown but may be Lyme
band 41 (IND)                             ==>  indicates a spirochete
                                                            (maybe Lyme, maybe not)


IGG (appears later after infection):

band 41 (+++)                             ==> indicates a spirochete
                                                             (maybe Lyme, maybe not)
band 58 (+)                                 ==> unknown, but may be Lyme

====================================================
My LLMD said he was surprised my tests were so positive, since I had already been ill for close to a year.  fwiw.  everybody's different for a whole lot of reasons.

[Ricobord]

I tested negative on all 3 (4)'tests according to the CDC and IDSA.

IFA (an alternative screening test to the ELISA),
CSF antibody test,
IgM Western Blot (CDC Negative / IGeneX positive),
IgG Western Blot (both CDC & IGeneX negative).

I was "Not Negative" (halfway between positive and negative) on the Bartonella antibody test and negative on the Bartonella FISH test.  My LLMD diagnosed me with Bartonella based on these results.

I had to go out of network to the LLMD where I was diagnosed and treated. Fortunately for me, my GP believes me and the diagnosis and is supporting my treatment.

I had had Lyme for 6 years when I was finally diagnosed but only had chronic symptoms for the previous 16 months. The IDSA says the IgM is unreliable and therefore irrelevant in someone sick over a month and to ignore a positive for such patients. Because of this, I don't think any ID doc, Rheumie, or Neuro in CA would have diagnosed me with those results. None of the doctors I went to had even seen a case of neuro Lyme, let alone knew anything about the testing.

[mojogal]

I tested negative on all CDC tests,
First try with igeneX I tested positive for Lyme and Bart's and 3rd time postive by igeneX for babs.