There are a number of pathogens out there, that we KNOW about, but we don’t have good ways of diagnosing people infected with them. We really have no idea how many people with undiagnosed chronic illness are infected with tick-bourne illnesses like Borrelia Miyamotoi, Borrelia Mayonii or Borrelia Bissettii. They walk amongst us, undiagnosed and lost.

On my journey in being diagnosed with CFS, I had also been diagnosed with Lyme (prior tick-bite,positive ELISA, Negative WB, but postive PCR from Igenex). It was confusing being in this diagnostic gray area. I was treated with antibiotics for most of a year, with little to no benefit, and I no longer identify with the Lyme disease diagnosis.

However, in my research, I identified something that really bothers me.

We KNOW that ticks infected with B.Miyamotoi, B.Mayonii and B. Bissettii exist in multiple areas in the United States as reported by the CDC. They’ve been discovered by multiple research teams in multiple parts of the United States, in all areas endemic for Lyme and also non-endomic areas like Northern California.
Study of tick-infected birds in Northern California
Stanford Study San Francisco Bay Area open spaces

Miyamotoi wasn’t recognized at all in the United States until 2013

In 2015, there was a study that identified 97 people infected with Miyamotoi out of a population 11,515 with suspected tick-bourne illness. I could only imagine that there are hundreds, or thousands of people infected, but not diagnosed.

We have no widely available diagnostic tests for these illnesses, so where are all the people infected with these pathogens?

Since we’ve trained our doctors to only acknowledge CDC-Positive Lyme (or else be outkast to the quacky fringes of “ LLMDs”), logically, we MUST have a population of people that are afflicted with a Lyme-like (therefore CFS-Like) illness that are undiagnosed and untreated.

It seems that, outside the niche of the “LLMD” community, doctors are terrified to treat with antibiotics unless a patient has an obvious bullseye rash, or a CDC Positive Serological result (ie, positive Elisa followed by positive WB).

I cannot come to any other conclusion than that some people in the CFS community must be infected with some sort of borreliosis.

I feel like we’ve been trained to be highly skeptical of Lyme diagnosis outside well-defined parameters, but I think we need to consider all options.  It’s reasonable to assume that some in the CFS community have one of these infections and could improve with antibiotic treatment.