@cyclist
I myself just had testing done thru Igenex. My very reputable ME/CFS specialist had me do it. Since getting my results (doctor & I have not discussed them yet) showing a positive IFA and a strong "Igenex positive" IgM I have been researching this Lyme stuff myself.
For me it's been helpful to learn about the known and accepted limitations of standard CDC testing. From a recent CDC post...
"When performed and interpreted in accordance with current guidelines, 2-tiered serologic analysis has a sensitivity of ≈70%–100% and a specificity >95% for disseminated Lyme disease"
This means there is up to 30% chance someone who is infected with Lyme will be negative via conventional testing. Of course if a person presents with an EM rash they will get a diagnosis and antibiotic treatment despite not testing positive.
This brings us to the % of people who do not develop an EM rash. The CDC says that "approximately 70-80% of people with Lyme disease have EM." Some argue the % is lower.
This leaves me to conclude that there has to be people who become infected with Lyme disease who never develop EM, and who also test negative on CDC approved 2-tier testing, and could I be such a person?
My Igenex results show a positive IFA and I am positive for 7 different IgM bands . I know some in the ILADS camp would be quick to automatically declare that a screaming positive result, but I am taking a more guarded approach. I've been breaking down which of my positive bands are considered Lyme specific, and which are known to have cross-reactions as stated below in a NIH article about Lyme...
"The numerous antigens present in whole-cell assays can result in cross-reaction with antibodies to other microorganisms or tissue components. Many diseases have been reported to cause significant cross-reactivity in IgM and/or IgG assays. Among such diseases are autoimmune disorders, Epstein-Barr virus infection, bacterial endocarditis, syphilis, other spirochetal infections, and
Helicobacter pylori infection."
So that's where I am at right now. For me I am glad to have been tested via Igenex as they test for more bands than is available via standard testing. In my case insurance covered the testing in full, and whatever the case turns out to be for me, given my symptoms and how Lyme-like rather than ME/CFS-like some of them are, I will rest more easily knowing Lyme disease was not simply excluded as a possibility based on standard testing that is known to have flaws.
* And of course I didn't even get into the debate regarding IgM vs IgG in Lyme. The case for Lyme not seroconverting to IgG in some people seems to have some strong merit in my opinion, especially in those with immune deficiencies, etc.
Also could my IgM just be showing evidence of an old infection that is not active? I do not know if it's possible to be exposed to get Lyme and clear the infection without treatment or not. Lots of questions to get answered. This from Dr. Bob Naviaux...
"Third, latent and reactivated viral and bacterial infections can occur, but in the case of ME/CFS that has lasted for more than 6 months, this may be the exception rather than the rule. Some doctors and scientists have not done a good job at educating patients and other scientists about the difference between serological evidence of infection in the form of antibodies like IgM and IgG, and physical evidence of viral replication like PCR amplification of viral RNA or DNA, or bacterial DNA."
I am assuming you have already been tested thru Igenex? Have you received treatment for Lyme based on your results?
