You have to find a good Doctor that specializes Lyme--problem is a lot or most don't take insurance and many of the big carriers still don't view Lyme as a actual disease so they don't cover a lot of the treatment and treatment plans--like you mentioned in the previous post. I feel like many insurance carriers view Lyme Docs has almost vodoo scientists. Because so many Lyme tests come back negative, I think the big Health Plans are hesitant to cover stuff.
It all about getting on the right treatment plan. Just as quick background, last Jan I had these symptoms come out of nowhere---mine where very neuro based and I was losing sensation and tingling in my extremities along with rapid heartbeat, muscle fatigue and extreme muscle tightness, night sweats among others. Got so bad, I was bed ridden for a few weeks and couldn't even work even though I work from home. Super scary and had no idea what was going on. You think the worst and thought it was early onset ALS based on symptoms and my Primary care said the same--which I don't think he should have as it put the fear of God in me. I didn't even think of Lyme, but he tested for it too because of some of the symptoms. Got a positive Lyme test back on all the all Lyme tests---which was a relief in some ways because I knew what the cause was now.
Back to the treatment--Primary care did the normal routine of doxycycline everyone doc does--said 5-7 days I would be much better, nope didn't happen. Was worse than ever and getting worse by the day. Was able to get a referral from a friend (who has Lyme) to Lyme specialist in Albany--guy was awesome, unbelievably knowledgeable on the disease and put me on totally different treatment plan with 3 different antibiotics and different supplements. He took more detailed tests too which also showed all positive for Lyme. I never saw a tick or bullseye or anything--he did think or was more recent just because of the the Lyme anitbodies showing up in the test which were off the charts he said. Took a while, but finally was getting better after a few weeks and much better now. Like you mentioned it definitely got pricy because they don't take insurance or insurance doesn't cover most stuff. My health was certainly worth it, that's for sure.
You can PM if you want for info on the clinic I went to or more info on it. I know your far from there, but with Covid everything is virtual now anyways. Good luck with getting back on track.