As I go along further on this crazy journey, I am coming to think that these antibody tests for specific organisms are useful only to know if we have been exposed to that particular organism. I do appreciate that many of these creatures can reactivate, however, as I saw this happen with my son. He had a well documented case of EBV with specific titers that rose then fell, as he was monitored for a year.
The unusual symptom that he developed when first sick was severe, sudden onset of extreme urinary frequency. This symptom would gradually get better, but then reoccur if he caught A cold or flu. This happened many times over a period of 4 or 5 years. Can we assume this indicated that the EBV had reactivated when his frequency suddenly jumped up?
I just had a bunch of these antibody studies and I have abnormally high IgG titers to Mycoplasma pneumoniae, EBV ( including Early antigen), Cyomegalovirus, Herpesvirus 6, and Chlamydophila pneumoniae. Plus the positive Lyme/ Borrelia IgG bands. Geez. Ridiculous.
After thinking and reading and more thinking, I am inclined to think that my immune system is just nuts - cranking out all kinds of antibodies for everything. An immune system on overdrive. Why????????????
Maybe Overdrive immune system is a compensation for a leaky blood-brain barrier, or a leaky gut???
From my experience, there's no substitute for having someone with expertise in CFS and immunity looking at your titers.
My naturopathic doctor had run a bunch of infectious tests and identified 4 infections, HHV6, CMV, and mycoplasma and chlamydia pneumoniae, mostly with high IgG, which increased to high levels while we watched them. We tried a lot of non-pharmaceutical interventions, and while I seemed to respind, it didn't seem to be enough.
Looking for more brains to help, I went to an infectious disease specialist, liver specialist, rheumatologist, neurologist, etc. who all dismissed my abnormal titers and other abnormal labs, and who all focused in on my low TSH... as I went downhill.
Finally, I flew 700 miles to a CFS expert, who ran a bunch of labs, confirming the infections my ND had found. He said "I know what we were all taught in med school, but you have those infections." He also found HSV2, which is suspected, and then, surprisingly a hidden case of EBV!!
Some of us, as research has shown, don't show the typical results for the common EBV labs. I'd been tested at least 4 times with titers of 0. These tests showed sky high VCA and positive PCR.
My ND had already gotten my insurance to approve IV antibiotics as 2 months of oral antibiotics messed up my gut but had little impact on the infections. My CFS supported this, added Valcyte, and qualified me for IVIG every 3 weeks.
Though I have a long way ahead of me, I'm improving, and my brain fog has lifted. But health is very important, and that's going to be a project for the foreseeable future.
I suspect many others have infections their doctors just haven't found. And as any one of the 6 I have can create a lot of havoc, including cancer and auto immune disease, they're worth finding and treating. I'm thankful my ND put me on this path, and thankful I listened to my instinct and not the dismissive and arrogant doctors, and sought out deeper expertise.