A number of us here have gone 'out of network' for treatment. It seems that many Lyme docs practice independently or in small group settings, and to keep overhead down, they do not have an extensive billing department to jump through the insurance company hoops. (In addition, docs who are signed up with an insurance company get lower reimbursement that an independent doc does, because the insurance company has to get its cut.)
The good news is that altho independent Lyme docs cost more upfront, your insurance company will often reimburse you (at an out-of-network rate) for at least part of your bill from the LLMD. That is what I did, and it worked fine. The doc gave me an itemized bill, I paid the doc, then I submitted the bill to my insurance company for reimbursement and got back quite a large percentage of what I had paid the doc.
By not having a massive billing department on staff, the doc can charge lower rates, and passes at least some of the savings on to the patient. Win/win. The insurance company and its billing staff are cut out of the loop, except for reimbursement payments, which are pretty straightforward to process. You don't get all your money back, but quite a lot of it.
I know, it seems like it should all be the same price, but there really is a savings when the insurance company's operating overhead for the out-of-network docs is not factored in to the reimbursement.
Another reason a Lyme doc will often opt out of insurance participation is to avoid arguing with the insurance company about diagnosis and treatment. The insurance company's docs who oversee these things apparently are hard on in-network docs who dispense more than a few weeks' antibiotics, but when it comes to out-of-network reimbursement to a patient who has paid an LLMD out of pocket, the insurance company is more generous. Cost savings from lower overhead? Probably.
And when it came to prescription meds for the Lyme etc., there was no quibbling from the insurance company. They just reimbursed like any other med.
So check your insurance company's out-of-network reimbursement rates and check with a couple of Lyme doc's offices about their hourly rates, and you'll be able to guestimate what your doc charges will be.
... and PS ... it was worth every penny to get truly well. Keep your eyes on the prize.
There are also Lyme-related charities that can assist the truly destitute in paying for their docs and meds. If you search online for -- lyme charity -- it will take you to a number of links.