Hey SIA - Sorry you are going around in circles in your mind about whether this is lyme or not. I can tell you that I think a large part of your doubt is the way the medical community views it.
First of all, they act like it is this minor little infection...so as a patient when your body is falling apart and your brain isn't working you think but the one's in authority are telling me that it is just this minor thing - then you can jump to it must be me. I think what helped me at that point is just becoming my own authority which has its own pitfalls - My "let them fall by the wayside" kind of attitude toward the establishment at times I think made my husband nuts but even he admits now that it took major strength to put up with half the bologna the lyme ignorant doctors dished out. Ok, so there is that point.
Then the bacteria in and of itself is hard to test for - you get all of these blood tests from different labs and they are all different - and once again - what a surprise
the establishment's blood tests that are accepted by the CDC say that you are hunky dorey - nothing wrong here - no lyme, no coinfections...oh yeah you have this mysterious virus that you are fighting but that is nothing...Oh, gosh as I wrote that I just remembered my visit to the ER at my Mother's house. She had to run out for something after she knew I was alright and she came right back to pick me up - I remember sitting with that blood test in my hand - staring at the blood counts indicating some virus I questioned them about and they said was inconsequential...ok, now I am crying...wow, didn't realize I was still carrying that around with me...I was so sick...so sick...had started doxy that a veterinarian had given my Mom's dog....after he saw the bruising on my legs...he knew I had lyme...so I had been on it for five days and on the fifth day thought I was having a stroke because my right arm was weak, I couldn't think, the anxiety was unbelieveable...and after the appointment there I sat on the sidewalk waiting for my Mom to pick me up (she had an errand and waited until she knew I was alright but still needed to wait for blood work)...this was supposed to be my vacation...I had to forego this vacation...I had to give up going to massage school, I had missed two weddings....tons of disappointments over the past 6 months and I was so SICK. I was discharged from the ER and I went out to the waiting room for a moment and looked over my bloodwork...there was inconsistencies and highs and lows. I got excited...there had been a mistake the bloodwork wasn't fine. So I asked a nurse what the deal was. I went back to see the doctor again and he told me that all I had was a little, inconsequential virus.
At that moment I just needed to get out of there...I was just so upset...something was wrong, but what? Was I mad? I started questioning myself...It was a living Hell! There I sat on the cold concrete sidewalk waiting for Mom to come back and pick me up - I couldn't stay in the waiting room of the ER or even the Hospital...I had also seen another doctor at the same place that week trying to figure things out...he ordered a thyroid test (which I already had two of) and a blood sugar test and said if those were normal I should consider an antidepressant...I sat on that cold sidewalk looking up at that hospital feeling completely betrayed. I felt like a five year old trapped in a 34 year old body...I felt vulnerable and small, and very scared. Something was really wrong with my body and I knew I had to figure it out because every day I was sicker than the day before.
Every morning I thanked God I was still alive. I went off the doxy after 6 days it was too much to take and still not know if that is what I was dealing with...and it made me so much worse. Then I read here about herxing but when I tried again on day 7 it was just too hard.
It would be another 3 months before I would get my official diagnosis from an LLMD and start treatment. At this point, I would have eye spasms where my eyes would flutter up and down, unrelenting heart palpitations, hair loss, the list goes on forever.
I had two doctors - one an ID and the other a Vet who both had said we think you have tick borne illness. There were uncanny clues all around me that the Universe at large was sending me which consisted of bumper stickers, a 6 o'clock news show, my Mom's dog dying of liver failure while I was on vacation...it is believed induced by the lyme vaccine he had five years ago, a tick in my bed, there are more but I am forgetting them now.
I went through having to accept that most of the doctors I was seeing were not going to save my health or my life...this was not easy to accept because all through my life before when I was ill the doctor could always make me better and he/she was always the expert that I could trust...I had to let go of this...when I let go of this then I was up against the Fear that was a result of the previous realization...all the sudden it was my responsibility to take the bull by the horns and keep on searching for a diagnosis...to study to know end and learn as much as I could. This was so scary. I was alone - there was no doctor cheering me on (well there were a couple as I got closer and I will never forget their support) It was just a scary departure from the old reality I had regarding a doctor's role. Once I got through this though things got better.
Anyway, it is a long journey. I am sorry that your's is still raught with uncertaintity. I would recommend taking some time out, finding a quiet place and listening to your heart, your gut, what does it say. I know this sounds goofy but you need to get all the white coat's voices out of your head. I will tell you even after the IgeneX tests had come back positive and I was going to sleep the night before the appt. with my LLMD to start treatment I was still paranoid that the diagnosis was wrong...that the LLMD wasn't for real...all of that stuff. Then I started treatment and saw the herxing...felt the few days when I have started to feel better...watched as some of the most vexing symptoms have started to disapate a bit. Then I realized that to be a great LLMD in this day and age is anything but easy. That it would be a lot easier to treat other patients then deal with all the persecution and the tough roads to healing most lyme patients have. That is when I started to trust my LLMD, realize that this lyme thing is for real, and that despite I never saw that bug and bite that changed my life that it happened and now I am sick. It was a long road from there to here....
Hang in there. Sorry this turned into an epistle but it just brought up a lot for me. Take care...don't worry the truth will be revealed to you soon...you are close.