I have been hesitant to be more than a lurker here for some time as I never felt 'sick enough'...my heart ached for what some here were going through and I have never been that sick so felt like I could not post.
But now I finally have a Dr. who may help me and though he is not a LLMD, he is an 'outside the box' thinker and
open to learning. So, this is my story...I would love some thoughts and/or advice.
My best guess, I have been 'sick' for close to 18 years. It has waxed and waned, but Hubby says I have been un-well as long as we have been together, at least. (13 years)
I believe I was bitten by *something* in the spring of 1992, while I was at college in southern RI. I spent a LOT of time in the woods, always have, as a trail runner and nature lover. I got very sick, had a CRAZY rash all over my torso which did spread, but the Dr thought it was an allergy. From that point on, it seemed like I was sick every month. I would go through periods in my life where it seemed like I would catch EVERYTHING, and basically be sick once a month for months on end.
When I feel good, I am a go-go-go person. I like to be busy. I like to have long to-do lists, projects, etc. I go through periods of that, to periods of getting up and being upright is the best I can do.
Fatigue, headaches and muscle/joint aches have always been my main complaints, with increasing other complaints...many of which I read about here: numbness in hands and arms, brain fog, short term memory problems, light/sound sensitivity, nausea, heart palps, air hunger, GI issues, bouts of feeling like I am going to get slammed with the flu...but not, temperature regulating *issues*, night sweats....you get the idea...
5 years ago, after having my 3rd child it hit the worst it had been. I ended up seeing a Dr. who was a LLMD(on the sly) who tested me for everything and based on my symptoms, history and CD57 level(19 at the time) that I had Lyme, though my Western Blot(not Igenex) was negative. He put me on doxy, and I herx'd within the first week. 2 weeks later, I was out in the sun, having not been warned that this was not a good idea and had a severe reaction. I had to come off the doxy, did not go back on and then we moved...
about a year later I got sick again, bad. I was couch-ridden(can't be bed ridden with 3 young kids) and it was all I could do to watch them during the day. My PC at the time tested me for everything under the sun, I bet I had 20+ vials of blood drawn over several days. Lyme came back neg again, but my EBV, HHP-6, and mycoplasma pneumonae came back high. She decided it was CFS, and started me on an antiviral. (somewhere in there I was on an antibiotic as well, for a month, as I had pneumonia) The antiviral helped and I was feeling better within 3mo. At 6mo out, I stopped taking the antiviral.
6mo later, symptoms started to creep back in...bringing me to April of this year. I felt things slowly coming on and by mid-summer I was getting very close to couch-bound again. I had a new PC who was clueless and I basically had to go in on a day she wasn't there and cry to a NP to get back on the antiviral, which was the only thing that had worked in the past. I got it, and within 2 weeks a few of my symptoms had abated, enough so that I could function minimally.
My PC referred me to an Immunologist as she said she was outside her area of expertise(ya think?) which I appreciated very much. He is very open minded and was willing to give me a 6mo Rx. for doxy to see what happened. I have been on it for 2 weeks, herx'd within 48hrs of starting, which lasted about a week. I am feeling slightly more normal now, but still symptoms remain. He checked my immune function and said it looked pretty good, aside from these few elevated viral titers, (and I also have Hashimoto's which is being treated and is fine)
I have requested another CD57 pannel to see where things are at right now, which he was open to. He admits he doesn't know much about this, but is willing to learn. He did feel I had a Herx reaction, which HE brought up (I simply relayed what had happened).
I guess I don't know what to do now. I know I may never get a positive Lyme test. I also know it is a clinical dx. We have ruled out EVERYTHING from Lupus, to cancer, to hepatitis, to allergies...I know I am not crazy. I am a raw vegan, ultrarunner who is VERY into health. I want nothing more than to be *OK*...I can go from running 70m a week to NOTHING inside a month due to 'whatever this is' ...
If anyone has any advice...or if you think it is something else and I am barking up the wrong tree...please say so. I am not easily offended... 
Thank you for reading my long story!