Have you been evaluated for CIRS? Have you ever been exposed to mold? If I were you, I would have someone well versed in Shoemaker's CIRS work evaluate me for that before assuming Lyme/co and treating infections.
No and yes, in that order.
I need to give a little history, if it's not in my signature.
In 1984, totally unaware of something called Lyme disease, I was attacked repeatedly by nymph (hatchling) ticks while attempting to mow the yard between where I lived with my baby girl and my Mom on her 40 acres in the midst of a forest. After a year of every quackery a country dr. could drum up, things it is a wonder I survived, I got the diagnosis of Fibromyalgia at the Columbia University Hospital in Mo.
In 1992 while putting up fence in a different wooded area where I lived I started running high fevers for weeks on end, some high enough I got delirious and my daughter not quite a teenager by then running for help from a neighbor. I finally got back to that country Doc I'd been seeing, because I had read an article in the local paper of a woman who had contracted a disease called Lyme there.
My Dr. admitted he couldn't read the results and he gave it to me to take to a Dr. at that University Hospital I spoke of. He told me that the 3 positives on it had to be false positives, that one of them could also indicate syphilis. I was livid with indignation, as I'd been celibate for years since my divorce.
I didn't know what to think so I could only go back to the doubtful Fibro thing.
I had a relapse after should surgery in 2014, and after getting a referral from my surgeon for an Internist, I presented my symptoms and asked for a Lyme test. I had been running fevers again, which he had been making a joke of, saying I had FUO-fevers unknown origin. I have a feeling behind my back the initials were FUC, as "cause" has the same meaning as origin, but I imagine not nearly has funny for him to say.
Anyway, it came back positive for RMSF, to which the health dept. asked me to retest within 2 weeks and it too came back pos. for it.
Anyway, Eventually I found this group and read everything and looked up everything. My eyes continue to
open up even currently, like it was just this month I realized that the ONLY test that was run on me in '92 was the Lyme Test. I was never tested for anything else, including Rocky Mountain Spotted Fever, in '92.
Yes I have had contact with mold, but I think whatever issues I have had from it are secondary to the Lyme infection or whatever other infections I've gotten. I've got most of the symptoms of many listed in our files here.
I'm lucky that I had some good years in remission and did some amazing amounts of work. I'm 67 now, and not bouncing back anymore.
As for seeking out knowledgeable people, I live in a very remote rural area and can no longer get to the cities where the kind of specialists this involves, practice, if they even would take a Medicaid card holder.