I've only had my Lyme diagnosis for a month and I'm still adjusting to the reality that it is a controversial illness. Hard to believe. Your experience is not unlike mine, but I've been sick for many, many years and seen a lot of doctors and been told I was negative for Lyme in the past. I'm almost certain my late husband had Lyme too, and he was never diagnosed. Given that, when I decided I had Lyme and needed a correct diagnosis immediately I contacted ILADS to see about
a doctor. There are several in my area, one an hour away (with a 3 month wait) and one 2 hours away (with a 1 month wait). So I made an appointment with both LLMDs, went to a GP who could see me immediately and asked for a Western Blot, took that to IgenX lab, had the results sent to the GP and the LLMDs. I figured I'd see the 2 hour (1 month wait) LLMD to start, and then if I didn't like him I'd switch to the 1 hour (3 month wait) LLMD. At least that way I could get started ASAP on treatment. As it turns out, the 2 hour LLMD is great.
By the way, when my test results were sent to the GP and the LLMD, the LLMD called back saying it was inconclusive and I needed a confirming test, which was positive. The GP called 2 weeks later and left a message that my test was negative. Go figure.
One other thing. The LLMD started me on doxy for the Lyme, but also did an additional test for coinfections. It turns out I also have babesia and 2 strains of bartonella. So, after 3 weeks on doxy, we switched courses and now he is treating the babesia.
Had I listened to the GP, or taken the time to try to convince the GP that I really did have Lyme, I'd still be trying to get a diagnosis instead of at the beginning of my journey to get well.
I hope you will get in to see a LLMD as soon as possible so that you can start treatment, too. Good luck to you.